I've been trying to update my blog but just simply haven't had the energy. Shortly after arriving home, my mom developed severe back pain. After visiting a doctor near our home, an x-ray revealed a compressed disk. Because her pain has been increasing, Ma and Pa left this morning to return to Florida where she will see her family doctor tomorrow. Please pray for Arlene that God protect her and put the right people with the right solution in her path.
Most days of my recovery are a bit better than the day before, but not always. I recently discovered that the stabbing rib pain that I've had for several months in the lower right rib area is completely gone. I can actually lay on my right side hugging a pillow in comfort. The front of both sides of ribs feel as if I've been beaten with a baseball bat. That was caused from having to lay on my stomach during the surgery.
I'm completely weaned off one of my many narcotics and am working on weaning of a second one. Pain starts to increase in the afternoon, like now. I really dislike being on narcotics so I am doing the weaning process slowly and am listening to my body.
I still don't have the courage to look at pictures of my back, but Jeremy continues to take pictures for me. My sis-in-law came by with my brother recently. She is a nurse and was so kind to remove the remaining steri strips from the incision. She said it was one of the best looking incision with the least amount of bruising. Bruising? That didn't cross my mind I would be bruised. Oh well. I'm able to shower myself which is a BIG accomplishment, but really wears me out.
Running of out steam to wright more, but a nap is calling for me.
Warmly,
Doreen
Wednesday, December 21, 2011
Sunday, December 11, 2011
There's No Place Like Home!
What a wonderful moment it was pulling into our garage and seeing my daughter and parents stepping out to great us! Their eyes were huge with shock at how tall I am having regained the 4" I'd lost this year. The only pain I'm having trouble controlling is abdomen pain. I'm eating well albiet very small meals.
Tomorrow is the two week mark when I can take a shower - FINALLY! Thank God for baby wipes. :-)
I've had a couple of instances where I get up and walk somewhere in the house; totally forgetting to use my walker. Oops!
Just a short note today, back to sleep and recovery.
Warmly,
Doreen
Tomorrow is the two week mark when I can take a shower - FINALLY! Thank God for baby wipes. :-)
I've had a couple of instances where I get up and walk somewhere in the house; totally forgetting to use my walker. Oops!
Just a short note today, back to sleep and recovery.
Warmly,
Doreen
Tuesday, December 6, 2011
I Must be Dreaming!
We received the call today from Dr. Lenke's nurse that we can go home tomorrow!!!!!! I'm over the moon! We'll start packing today and Jeremy will load up the car tonite. Tomorrow morning I will get my hair washed and dried at the hospital's salon because I don't have the strength to do that right now. Jeremy and I have missed Lizzie terribly but are so happy that she's had such fun with her friends and my folks. Our goal is to drive halfway tomorrow to Clarksville, TN, but we'll need to stop every hour so I can get out to walk and stretch.
What a remarkable journey this has been. It is true what veteran scoli surgical paitents say, every day is a bit better than the day before. This is a short update since we've got a lot to do before we leave tomorrow.
THANK YOU, THANK YOU!
Warmly,
Doreen
What a remarkable journey this has been. It is true what veteran scoli surgical paitents say, every day is a bit better than the day before. This is a short update since we've got a lot to do before we leave tomorrow.
THANK YOU, THANK YOU!
Warmly,
Doreen
Monday, December 5, 2011
Is that Really My Spine?!
Hi Everyone!
I had typed up a great legible post last night; however, something did not work correctly and I lost the entire thing. Oh well. He's my second try.
Here is my before and after x-rays of my back:
Dr. Lenke's nurse said my curves 70/68 degrees are now about 10 degrees! What Wha??!! Here are some shots of my rib hump"
I had typed up a great legible post last night; however, something did not work correctly and I lost the entire thing. Oh well. He's my second try.
Here is my before and after x-rays of my back:
Dr. Lenke's nurse said my curves 70/68 degrees are now about 10 degrees! What Wha??!! Here are some shots of my rib hump"
Jeremy discovered an big bruise on my arm:
It doesn't hurt, just is a little creepy to look at.
My greatest pain coming from lack of bowel movements. This may be my most unusual prayer request, but PRAY FOR POOP! LOL! Seriously, I have not gone in 7 days and nothing seems to help move things along. Jeremy has some photos of my incision but I'm not ready to look at them just yet. I will post later after.
Warmly,
Doreen
Greetings from the Other Side
It is difficult to write because of the heavy meds. Rec'd a wonderful surpirse yesterdy whe n doc said I could g0kme on Saturdayr Mydays are completely mixed up,k it's hard to talk. R9ight now I"m expeirnceijg horrible gas paijns.
wi;; tpe more when i'm more coherentl.
:)
warmyu,l
Dreppen
wi;; tpe more when i'm more coherentl.
:)
warmyu,l
Dreppen
Saturday, December 3, 2011
Last Guest Post - Doreen is "Home"
This is my final guest update. The last days have been busy. I told Doreen I'd have her post the next one as incentive but we skipped a day so I figured I'd better wrap this up here.
First good news is that her neighbor was moved out and she never got a new one, so for all practical purposes it was a "private" room although I would still go back to the lodge in the evenings. Yesterday Doreen was making a lot of progress with sitting up, walking, brushing her own teeth, getting a bath, etc. Pain was managed really well.
Then, everything seemed to happen all at once. She got off the nutrition medication for her hypoglycemia, started eating "real" solid foods, had the tubes and catheter removed, and started getting up on her own to use the restroom, etc. Most of this happened between 6am - 8am before I even made it to the hospital this morning (I was playing at Mr. Mom, doing laundry and preparing the room for her return). We thought yesterday the release might be on Monday, but when I came in she smiled and told me they said today would be the release date. I could tell she was doing much better but was still surprised it would happen so soon.
The nurse and I gave her a sponge bath and I got to see the scar for the first time. Doreen let me take a picture but any of the x-ray, hospital, etc. pictures I'm saving for when she is less drugged so she can decide what she wants to share. I can say it amazed me to see how clean the scar was after so few days — it's a long scar but it looks to be healing quite well.
Occupational therapy came. She'd already been using the bathroom on her own. This time she removed both socks and put them back on by herself using the tools they provide with the spine kit I mentioned earlier.
I received the list of medications so I took them to the pharmacy and it was about an hour to fill them all. I came back and she was in bed eating and told me I missed all of the fun. She had walked 175 feet and then went up and down the equivalent of about 3 flights of stairs or 36 steps. She told me the physical therapist told her if she didn't complete that, she wouldn't be going home, so she did it. Her central line was removed as well.
I helped her get dressed in her "civilian clothes" and made a few trips to the lodge to get some walking exercise in and remove all of her stuff. Then I came back and the nurse gave me the schedules/instructions for follow up and medications and that was it - time to go! I thought my heart would jump out of my throat I was so excited. I walked back to the lodge, grabbed some pillows, and drove the truck back to the hospital. We have a Honda Pilot. The nurse gave me the number to the nurse station so when I pulled up I could park by the curb and call for them to bring her down.
Here is the happy patient ready to leave:
Transport brought her down and wheeled her to the truck. It was a fairly big step up so she had some difficulty getting in but then she got settled and was fine with just a pillow behind her back. I did notice the seat is a little low for the 90 degree angle she should sit at so we agreed she'll get boosted with a pillow when she rides the next time. We drove back to the lodge and I parked up front. There was a long ramp to get inside and she did great, then sat in a chair to rest. Once she had some water and was rested, I asked her if I should get the elevator ready and she said, "No, we're taking the stairs." Silly me. So we went up a flight of 16 steps (yeah, I counted them) and then into the room and into bed. That really wore her out so she is sleeping peacefully now.
I took the time to enter the medication schedule into Google Calendar. My Windows Phone synchronizes with it so I get reminders that buzz me whenever the next medication is due. I love modern technology! So this is it. Husband signing off. It's in my wife's hands now. She has her lap top and her phone so the next one is hers to post!
Jeremy
First good news is that her neighbor was moved out and she never got a new one, so for all practical purposes it was a "private" room although I would still go back to the lodge in the evenings. Yesterday Doreen was making a lot of progress with sitting up, walking, brushing her own teeth, getting a bath, etc. Pain was managed really well.
Then, everything seemed to happen all at once. She got off the nutrition medication for her hypoglycemia, started eating "real" solid foods, had the tubes and catheter removed, and started getting up on her own to use the restroom, etc. Most of this happened between 6am - 8am before I even made it to the hospital this morning (I was playing at Mr. Mom, doing laundry and preparing the room for her return). We thought yesterday the release might be on Monday, but when I came in she smiled and told me they said today would be the release date. I could tell she was doing much better but was still surprised it would happen so soon.
The nurse and I gave her a sponge bath and I got to see the scar for the first time. Doreen let me take a picture but any of the x-ray, hospital, etc. pictures I'm saving for when she is less drugged so she can decide what she wants to share. I can say it amazed me to see how clean the scar was after so few days — it's a long scar but it looks to be healing quite well.
Occupational therapy came. She'd already been using the bathroom on her own. This time she removed both socks and put them back on by herself using the tools they provide with the spine kit I mentioned earlier.
I received the list of medications so I took them to the pharmacy and it was about an hour to fill them all. I came back and she was in bed eating and told me I missed all of the fun. She had walked 175 feet and then went up and down the equivalent of about 3 flights of stairs or 36 steps. She told me the physical therapist told her if she didn't complete that, she wouldn't be going home, so she did it. Her central line was removed as well.
I helped her get dressed in her "civilian clothes" and made a few trips to the lodge to get some walking exercise in and remove all of her stuff. Then I came back and the nurse gave me the schedules/instructions for follow up and medications and that was it - time to go! I thought my heart would jump out of my throat I was so excited. I walked back to the lodge, grabbed some pillows, and drove the truck back to the hospital. We have a Honda Pilot. The nurse gave me the number to the nurse station so when I pulled up I could park by the curb and call for them to bring her down.
Here is the happy patient ready to leave:
Transport brought her down and wheeled her to the truck. It was a fairly big step up so she had some difficulty getting in but then she got settled and was fine with just a pillow behind her back. I did notice the seat is a little low for the 90 degree angle she should sit at so we agreed she'll get boosted with a pillow when she rides the next time. We drove back to the lodge and I parked up front. There was a long ramp to get inside and she did great, then sat in a chair to rest. Once she had some water and was rested, I asked her if I should get the elevator ready and she said, "No, we're taking the stairs." Silly me. So we went up a flight of 16 steps (yeah, I counted them) and then into the room and into bed. That really wore her out so she is sleeping peacefully now.
I took the time to enter the medication schedule into Google Calendar. My Windows Phone synchronizes with it so I get reminders that buzz me whenever the next medication is due. I love modern technology! So this is it. Husband signing off. It's in my wife's hands now. She has her lap top and her phone so the next one is hers to post!
Jeremy
Thursday, December 1, 2011
Guest Post: Day 4 - Walking and Eating
This may be the last guest post for me ... I'm bringing Doreen's laptop and she may be ready to start hammering out her own updates tomorrow. We'll see!
Last night was exciting as Doreen moved to her first "clear" foods and was drinking some apple juice and all-natural soda (carbonated water and fruit). I waited to have "dinner" with her and then returned to the lodge, where I had my own dinner (organic burrito, organic corn chips, and an orange).
This morning was 28 degrees but sunny and beautiful. It really felt like the days I started dating Doreen and would get so excited to see her. I just get a lump in my throat and feel more and more excited with every step and the elevator seems to take ages to her floor. Then the highlight of my day is walking in and seeing her.
She was something else today. Had her glasses on, was sitting upright eating jello and drinking water directly. No more ice chips or sponges/swabs. In fact she got cleared for solids and we ordered her lunch ... hasn't come yet but it's a salad which she likely won't eat and some beef stew which we are hoping she can enjoy the broth. She ate more jello and had plenty to drink.
Physical thereapy came and she did better than any other day with sitting up and then walking. She walked 10 feet the first time yesterday and about 30 feet the second time. Today she walked 80 feet. She then came and sat in the wheel chair. We had a little bit of concern because the nurse mentioned that transport was coming to take her for X-rays. We decided she should stay in the wheel chair and get transported that way. After about 40 minutes though they were not in sight so I paged the nurse again. My concern was getting her back into the bed and then having to turn around and get her out again. The nurse checked and it turns out the X-rays are scheduled for tomorrow morning. I'll check what time to make sure I'm here to help when it happens.
She got back into bed and that was it - the walk and sitting had totally exhausted her. She passed out and this is the first time I've seen her truly sleep since I've been at her side. It was great ... it's getting close to lunch so I'll wait for her food and eat with her and then go to the cafeteria myself.
Her food came and she had a little bit of broth, some nibbles of crackers and some jello. It's a start. I ate and came back and she was sleeping. She woke up and had some grape juice. Then she fell asleep again for several hours. She hasn't been sleeping at night because her roommate was so loud, but they just moved out ... hopefully we'll have a quieter "neighbor."
She was sleeping so deeply that when physical therapy came, we had trouble waking her up. The nurse came in and forcibly woke her to ensure the medications weren't overdone, and now she is relaxing and waiting for her session. We're going to try to walk farther of course. She is due to have catheter and IV out tomorrow. She is also scheduled for x-rays. If that checks out and she does some pre-requisites like going 1 and 2 on her own, then we may be cleared to check her out on Saturday!
We finally got to physical therapy. She did a fantastic job standing up and walking a good distance, then sat for awhile in her chair. I think the first walk wore her out, so we transferred her back to bed and her food came. She is eating far better and had some potato soup and several grapes. Always tough to leave her but decided to head home, get some food and rest and focus on another great day tomorrow!
Last night was exciting as Doreen moved to her first "clear" foods and was drinking some apple juice and all-natural soda (carbonated water and fruit). I waited to have "dinner" with her and then returned to the lodge, where I had my own dinner (organic burrito, organic corn chips, and an orange).
This morning was 28 degrees but sunny and beautiful. It really felt like the days I started dating Doreen and would get so excited to see her. I just get a lump in my throat and feel more and more excited with every step and the elevator seems to take ages to her floor. Then the highlight of my day is walking in and seeing her.
She was something else today. Had her glasses on, was sitting upright eating jello and drinking water directly. No more ice chips or sponges/swabs. In fact she got cleared for solids and we ordered her lunch ... hasn't come yet but it's a salad which she likely won't eat and some beef stew which we are hoping she can enjoy the broth. She ate more jello and had plenty to drink.
Physical thereapy came and she did better than any other day with sitting up and then walking. She walked 10 feet the first time yesterday and about 30 feet the second time. Today she walked 80 feet. She then came and sat in the wheel chair. We had a little bit of concern because the nurse mentioned that transport was coming to take her for X-rays. We decided she should stay in the wheel chair and get transported that way. After about 40 minutes though they were not in sight so I paged the nurse again. My concern was getting her back into the bed and then having to turn around and get her out again. The nurse checked and it turns out the X-rays are scheduled for tomorrow morning. I'll check what time to make sure I'm here to help when it happens.
She got back into bed and that was it - the walk and sitting had totally exhausted her. She passed out and this is the first time I've seen her truly sleep since I've been at her side. It was great ... it's getting close to lunch so I'll wait for her food and eat with her and then go to the cafeteria myself.
Her food came and she had a little bit of broth, some nibbles of crackers and some jello. It's a start. I ate and came back and she was sleeping. She woke up and had some grape juice. Then she fell asleep again for several hours. She hasn't been sleeping at night because her roommate was so loud, but they just moved out ... hopefully we'll have a quieter "neighbor."
She was sleeping so deeply that when physical therapy came, we had trouble waking her up. The nurse came in and forcibly woke her to ensure the medications weren't overdone, and now she is relaxing and waiting for her session. We're going to try to walk farther of course. She is due to have catheter and IV out tomorrow. She is also scheduled for x-rays. If that checks out and she does some pre-requisites like going 1 and 2 on her own, then we may be cleared to check her out on Saturday!
We finally got to physical therapy. She did a fantastic job standing up and walking a good distance, then sat for awhile in her chair. I think the first walk wore her out, so we transferred her back to bed and her food came. She is eating far better and had some potato soup and several grapes. Always tough to leave her but decided to head home, get some food and rest and focus on another great day tomorrow!
Wednesday, November 30, 2011
Guest Post - Day 3, Several Small Steps
Last night I went to ICU hoping for an early room assignment. I was kicked out at 6:00pm for the shift change and returned at 8:00pm. They had not yet heard of a room but the nurses were kind enough to bring me a recliner with sheets so I could rest. I decided to stay the night with Doreen in case she got a later room assignment.
The room assignment came at around 10:00pm. I was reclined next to Doreen and the nurses got a laugh when I showed them how I could easily access the swabs (for water) and tissues that Doreen needed. They told me she had me trained well and asked that she share her secrets when she was feeling better.
At around 11:30pm we were moved to the new room. Unfortunately it was a shared room. That meant almost zero room for me, so I got Doreen settled and headed back to the lodge. I stopped by the cafeteria first to grab some food and brought it back with me to eat, then pretty much passed out.
I had promised to return to see Doreen at 8:00am and overslept a bit so instead of cooking breakfast at the lodge, ended up going in to see her first. It was a nice, warm 24 degrees Fahrenheit as I came in. Fortunately I had remembered to bring my bandanna so I could cover my bald head and ears, otherwise I might have lost them on the way. I also brought in her spine kit and other items. She was doing well and I stepped out to have my breakfast. She was already moving to solid medications and taking her first swallows of water. She had really bad stomach cramps but we were told that is normal as the digestive wakes up, and actually a good sign that she'd be moving to more solid foods soon.
I was able to get a chair squeezed in with a power cord so I can at least do some catching up by her side while she rests. She won't be getting much today as Occupational Therapy was already in. She not only stood this time but actually walked about 10 steps! It was great. She felt really dizzy and nauseous and had to sit. We think it's the morphine doing it so this afternoon they are planning to return after she has her pill-form pain killers so she doesn't have to use the morphine and hopefully won't get as dizzy. The plan is for her to walk some more.
She also learned more about her "spine kit" which is a bunch of instruments provided to help her with doing things without bending or twisting. She was able to take off a sock and put it back on by herself using the tools.
Her friend Karen sent a beautiful arrangement of balloons. It was a nice surprise and helps to brighten the room.
I've also been diligent with helping her do her breathing exercises. The device is pictured here (ignore the goal setting, she's been hitting 1500, I noticed after I took the picture I hadn't set it). She has to inhale and try to get the ball inside to reach a specific level. She's been doing really well but I noticed right after pain medication her lung strength is far less than without it.
I'm going to head to lunch and will share other updates as I can!
Lunch was good, I had a huge salad. I came back and Doreen was getting a little tired. The nurse gave her some anti-nausea medication and some valium to help with nerves and sleep. The therapist came and Doreen sat up and felt dizzy and had a headache. She got a little sick but the good news is her digestive system is definitely awake now so she is cleared to start on clear foods tonight - jello, juice, popsicles, etc.
She sat a bit and then was ready to walk. She stood up and amazed us all by walking all the way out of the room and into the hall. She then turned around and walked back to the bedside, then sat in the wheel chair. She sat there for about a half hour before she told me she was ready to get back into bed. The wheel chair wasn't collapsing properly so she had to walk a bit so I could wheel it out and then sat down. She did great - so two times walking today and cleared for foods.
She is absolutely exhausted now. I am letting her rest and let her know if she was sleeping when I left for dinner, I'd just let her stay asleep. I'm going to relax a bit myself now and will check in again tomorrow.
The room assignment came at around 10:00pm. I was reclined next to Doreen and the nurses got a laugh when I showed them how I could easily access the swabs (for water) and tissues that Doreen needed. They told me she had me trained well and asked that she share her secrets when she was feeling better.
At around 11:30pm we were moved to the new room. Unfortunately it was a shared room. That meant almost zero room for me, so I got Doreen settled and headed back to the lodge. I stopped by the cafeteria first to grab some food and brought it back with me to eat, then pretty much passed out.
I had promised to return to see Doreen at 8:00am and overslept a bit so instead of cooking breakfast at the lodge, ended up going in to see her first. It was a nice, warm 24 degrees Fahrenheit as I came in. Fortunately I had remembered to bring my bandanna so I could cover my bald head and ears, otherwise I might have lost them on the way. I also brought in her spine kit and other items. She was doing well and I stepped out to have my breakfast. She was already moving to solid medications and taking her first swallows of water. She had really bad stomach cramps but we were told that is normal as the digestive wakes up, and actually a good sign that she'd be moving to more solid foods soon.
I was able to get a chair squeezed in with a power cord so I can at least do some catching up by her side while she rests. She won't be getting much today as Occupational Therapy was already in. She not only stood this time but actually walked about 10 steps! It was great. She felt really dizzy and nauseous and had to sit. We think it's the morphine doing it so this afternoon they are planning to return after she has her pill-form pain killers so she doesn't have to use the morphine and hopefully won't get as dizzy. The plan is for her to walk some more.
She also learned more about her "spine kit" which is a bunch of instruments provided to help her with doing things without bending or twisting. She was able to take off a sock and put it back on by herself using the tools.
Lunch was good, I had a huge salad. I came back and Doreen was getting a little tired. The nurse gave her some anti-nausea medication and some valium to help with nerves and sleep. The therapist came and Doreen sat up and felt dizzy and had a headache. She got a little sick but the good news is her digestive system is definitely awake now so she is cleared to start on clear foods tonight - jello, juice, popsicles, etc.
She sat a bit and then was ready to walk. She stood up and amazed us all by walking all the way out of the room and into the hall. She then turned around and walked back to the bedside, then sat in the wheel chair. She sat there for about a half hour before she told me she was ready to get back into bed. The wheel chair wasn't collapsing properly so she had to walk a bit so I could wheel it out and then sat down. She did great - so two times walking today and cleared for foods.
She is absolutely exhausted now. I am letting her rest and let her know if she was sleeping when I left for dinner, I'd just let her stay asleep. I'm going to relax a bit myself now and will check in again tomorrow.
Tuesday, November 29, 2011
Guest Post - Day 2: Leaping Forward by Standing and Sitting
Wow, what a second day!
I left last night around 10:00pm and caught up on sleep. I walked in this morning (33 degrees, was what I would call a "brisk walk") and had breakfast then came up to see Doreen.
First thing for me was amazement at how much better she was today than last night. She was far more lucid and speaking very well. I was told she had a blood pressure drop in the evening but she has normally low blood pressure so it wasn't a big concern. I was glad to be there with her, the pain was still bothering her a bit but was better with an increased dose and she was mostly thirsty. All vitals were great. The surgeon team had visited her earlier in the morning and cleared her to leave ICU.
Physical therapy came in and the first leap forward happened shortly thereafter. Doreen "log rolled" to her side, then sat up at the edge of the bed and then used her arms to push herself up and stand. She did it pretty much on her own with us standing by to make sure she didn't fall. She then turned and lowered herself into a chair. Her heart rate jumped quite a bit but blood pressure remained stable. She was nauseous but it passed eventually and she sat for a full hour before getting up again and back into the bed.
I knew the instant she sat up how wonderful the surgery had gone, she was so straight and I could not see the prominent rib hump she's had nor the diagonal crease from how her waist had been twisted. Then she stood and it literally took my breath away.
I moved to Atlanta in 1996 and was at a social gathering to meet people in the local area (just friends, not a dating scene and in fact had convinced myself I was done with dating for awhile) when she stepped into the restauarant. I still remember how we locked eyes and I knew this would be the woman I wanted to spend the rest of my life with. She looked back and as she approached I remember thinking how tall she was. Before the surgery, she had dropped from her former 5'10" at the time we met down to 5'6" and was looking up at me. Not today! When she stood, I have to imagine she gained every inch back because I was looking up again.
She was doing great after that and felt much better getting back into bed than out. I think the therapy wore her out because she started to drift off, so I left for lunch. I walked back to the lodge, ate some food there and came back. I was amazed at how much better she looked even after just an hour away. She was awake again and feeling great.
We were just getting ready to do another one of her breathing exercises (I've been making sure she does these on the hour every hour as needed, along with pushing her pain pump) when the occupational therapist came in and informed us she'd be standing and sitting again.
Everything was cleared and configured for this when Kelly from Dr. Lenke's team came in with X-Rays. This put smiles on our faces because her spine looks so straight. Literally from a pronounced "S-curve" with 70 degrees in the worse case to something that to me looked straight. It hadn't been measured but estimation was no more than 10 degrees.
We were elated and then went on to have Doreen stand up again and move to her chair. This raised her heart rate again and she felt nauseous again, but was also due for another dose of her anti-nausea medication. I asked her if she wanted to get back into bed but she insisted on sitting for another hour.
I then grabbed a nurse and we helped her back and she it pretty much completely on her own - we just held cables out of the way and were there to support her in case she lost balance. This exahusted her again and she started drifting off, so I took a short break and walked to a cafe to grab a drink (a caffeinated one, not a stiff one). When I walked back the clouds had cleared and the sun was shining - a nice heat wave at 42 degrees F.
Now she is just resting and relaxing while we wait to hear about moving to a room. It's been an awesome day and God is truly great. Thanks everyone.
Jeremy
I left last night around 10:00pm and caught up on sleep. I walked in this morning (33 degrees, was what I would call a "brisk walk") and had breakfast then came up to see Doreen.
First thing for me was amazement at how much better she was today than last night. She was far more lucid and speaking very well. I was told she had a blood pressure drop in the evening but she has normally low blood pressure so it wasn't a big concern. I was glad to be there with her, the pain was still bothering her a bit but was better with an increased dose and she was mostly thirsty. All vitals were great. The surgeon team had visited her earlier in the morning and cleared her to leave ICU.
Physical therapy came in and the first leap forward happened shortly thereafter. Doreen "log rolled" to her side, then sat up at the edge of the bed and then used her arms to push herself up and stand. She did it pretty much on her own with us standing by to make sure she didn't fall. She then turned and lowered herself into a chair. Her heart rate jumped quite a bit but blood pressure remained stable. She was nauseous but it passed eventually and she sat for a full hour before getting up again and back into the bed.
I knew the instant she sat up how wonderful the surgery had gone, she was so straight and I could not see the prominent rib hump she's had nor the diagonal crease from how her waist had been twisted. Then she stood and it literally took my breath away.
I moved to Atlanta in 1996 and was at a social gathering to meet people in the local area (just friends, not a dating scene and in fact had convinced myself I was done with dating for awhile) when she stepped into the restauarant. I still remember how we locked eyes and I knew this would be the woman I wanted to spend the rest of my life with. She looked back and as she approached I remember thinking how tall she was. Before the surgery, she had dropped from her former 5'10" at the time we met down to 5'6" and was looking up at me. Not today! When she stood, I have to imagine she gained every inch back because I was looking up again.
She was doing great after that and felt much better getting back into bed than out. I think the therapy wore her out because she started to drift off, so I left for lunch. I walked back to the lodge, ate some food there and came back. I was amazed at how much better she looked even after just an hour away. She was awake again and feeling great.
We were just getting ready to do another one of her breathing exercises (I've been making sure she does these on the hour every hour as needed, along with pushing her pain pump) when the occupational therapist came in and informed us she'd be standing and sitting again.
Everything was cleared and configured for this when Kelly from Dr. Lenke's team came in with X-Rays. This put smiles on our faces because her spine looks so straight. Literally from a pronounced "S-curve" with 70 degrees in the worse case to something that to me looked straight. It hadn't been measured but estimation was no more than 10 degrees.
We were elated and then went on to have Doreen stand up again and move to her chair. This raised her heart rate again and she felt nauseous again, but was also due for another dose of her anti-nausea medication. I asked her if she wanted to get back into bed but she insisted on sitting for another hour.
I then grabbed a nurse and we helped her back and she it pretty much completely on her own - we just held cables out of the way and were there to support her in case she lost balance. This exahusted her again and she started drifting off, so I took a short break and walked to a cafe to grab a drink (a caffeinated one, not a stiff one). When I walked back the clouds had cleared and the sun was shining - a nice heat wave at 42 degrees F.
Now she is just resting and relaxing while we wait to hear about moving to a room. It's been an awesome day and God is truly great. Thanks everyone.
Jeremy
Monday, November 28, 2011
First Guest Post - the Big Day
Hello, everyone.
It is my honor to write this as Doreen's "guest blogger" while she is unable to post herself - I am her husband, Jeremy. This is one post but I have been writing it throughout the course of the day so the thoughts are fresh in my mind.
This morning went very smoothly. We both slept well last night (so nice when you place your trust in Him, as His yolk truly is easy) and woke up to the alarm and jumped into action. We already had things packed - Doreen had a bag with bathroom items and some clothes with lots of space for me to take her clothes back. I packed my laptop, a book, several protein bars and a bottle of water. I had a protein shake for breakfast (fast and easy) and we got dressed then called security to give us a ride to the hospital.
Security was there in a flash - the place we are staying (the Barnes Lodge) is truly a blessing. Friendly people, attentive staff, and very easy to move around the campus. We got in early and waited for the registration to open and were second up. It was straight from there to our "module" which was where she was prepped. They hooked her up and took some blood (which was nice, because it could be drawn from her central line instead of having to stick her again) and then we waited. We met the team and they were all friendly and helpful. The fellow was a little late with the consent form but that was all in order and they administered the first pass of anesthesiology.
That was funny - I gave Doreen a kiss, she gave me a smile and her glasses, then the anesthesiologist asked her if she felt anything yet. She said "no" but then immediately her eyes started drooping and she was telling them how she did not want to be awake being rolled into the operating room. They told her she would be going under and may see a bit but probably wouldn't remember it. They had her do her wake up tests (squeezing a hand, moving feet, etc.) and rolled her away.
I was told my first update would come at 9:00am so I headed to breakfast. I had just loaded a plate when the beeper went off. I just set the plate aside and rushed back to the head desk wondering why I was being paged so early. It turned out they just wanted to get the pager back because I would be moving to the 7th floor waiting area and would receive phone calls or visits instead. So I dropped it off, headed back, found my plate and paid for it and enjoyed a nice breakfast. After that it was easy to find the waiting room.
It's very cozy here - no one else is waiting so I've got the room to myself. The wireless is good so I'm "dug in" and looking forward to the updates which I will share here. I'm actually surprised I'm far more calm than I imagined I would be ... but I've truly approached this in prayer and with the knowledge it is in His hands, and that has been more comforting than you may believe.
9:00AM Update
Received the first call. Just started surgery but everything is going well so far. Feeling good and making friends with ... the wireless (great connection here) and the coffee machine (great coffee).
11:00AM Update
Received the second call. Everything is going great. They are putting the screws in now and said it's moving along as expected. I'll call a few people with updates and then go get some lunch in the cafeteria.
Lunch was good - someone told me the South cafeteria is better than the North one and I have to agree. I got a spicy chicken sandwich. After that I realized it would be a few hours until my next update so I decided to walk back to the Lodge - it's only 5 minutes away - to drop off Doreen's items. It was a nice walk (yes, it is cold here but not raining) and felt great to get outside. I just dropped off what I needed and walked back then got settled again in the waiting room.
1:30pm Update
Thank goodness I feel relaxed and know Doreen is in great hands, so I was not anxious when 1:00pm came and went as I knew they would call when ready, and sure enough the phone range right at 1:30. Surgery is still going on as expected. Expecting another update in a few hours followed by a visit from Dr. Lenke after the surgery is done. Praise Jesus!
3:30pm Update
Received another call. They are closing her up, waking her up, and taking her to the recovery room. I should hear final updates and next steps in the next 1 - 2 hours. It's been a long day but so far everything has gone well. I'm looking forward to hearing the final updates and seeing her.
Thank goodness for books. Been relaxing and reading to pass the time when I'm not sharing updates on the phone or email.
4:45pm Update
Saw Dr. Lenke and he told me the surgery went really well - straightened her up quite a bit and she came out well as well. She is being moved to ICU and I can visit in about an hour.
6:00pm Update - We're Done! (Or, Just Beginning...)
We're done ... I got to see her. Obviously looking rough after a full day under and on her stomach, but she was lucid and could speak softly. She got to hear her mom and dad and daughter. The only hitch I know of is that she was feeling a lot of pain after the surgery. They didn't have the push-button administered yet and were working on it. I hope they can manage it but we also know it will get a little rougher before it gets better and are ready for the road ahead.
I left due to the shift change to grab a bite and update this. I'll go back to see her tonight and then visit in the morning. The surgical team will meet with her then and determine if she can be moved to a hospital room or needs to stay in ICU longer.
Thanks everyone, been a day ...
Jeremy
It is my honor to write this as Doreen's "guest blogger" while she is unable to post herself - I am her husband, Jeremy. This is one post but I have been writing it throughout the course of the day so the thoughts are fresh in my mind.
This morning went very smoothly. We both slept well last night (so nice when you place your trust in Him, as His yolk truly is easy) and woke up to the alarm and jumped into action. We already had things packed - Doreen had a bag with bathroom items and some clothes with lots of space for me to take her clothes back. I packed my laptop, a book, several protein bars and a bottle of water. I had a protein shake for breakfast (fast and easy) and we got dressed then called security to give us a ride to the hospital.
Security was there in a flash - the place we are staying (the Barnes Lodge) is truly a blessing. Friendly people, attentive staff, and very easy to move around the campus. We got in early and waited for the registration to open and were second up. It was straight from there to our "module" which was where she was prepped. They hooked her up and took some blood (which was nice, because it could be drawn from her central line instead of having to stick her again) and then we waited. We met the team and they were all friendly and helpful. The fellow was a little late with the consent form but that was all in order and they administered the first pass of anesthesiology.
That was funny - I gave Doreen a kiss, she gave me a smile and her glasses, then the anesthesiologist asked her if she felt anything yet. She said "no" but then immediately her eyes started drooping and she was telling them how she did not want to be awake being rolled into the operating room. They told her she would be going under and may see a bit but probably wouldn't remember it. They had her do her wake up tests (squeezing a hand, moving feet, etc.) and rolled her away.
I was told my first update would come at 9:00am so I headed to breakfast. I had just loaded a plate when the beeper went off. I just set the plate aside and rushed back to the head desk wondering why I was being paged so early. It turned out they just wanted to get the pager back because I would be moving to the 7th floor waiting area and would receive phone calls or visits instead. So I dropped it off, headed back, found my plate and paid for it and enjoyed a nice breakfast. After that it was easy to find the waiting room.
It's very cozy here - no one else is waiting so I've got the room to myself. The wireless is good so I'm "dug in" and looking forward to the updates which I will share here. I'm actually surprised I'm far more calm than I imagined I would be ... but I've truly approached this in prayer and with the knowledge it is in His hands, and that has been more comforting than you may believe.
9:00AM Update
Received the first call. Just started surgery but everything is going well so far. Feeling good and making friends with ... the wireless (great connection here) and the coffee machine (great coffee).
11:00AM Update
Received the second call. Everything is going great. They are putting the screws in now and said it's moving along as expected. I'll call a few people with updates and then go get some lunch in the cafeteria.
Lunch was good - someone told me the South cafeteria is better than the North one and I have to agree. I got a spicy chicken sandwich. After that I realized it would be a few hours until my next update so I decided to walk back to the Lodge - it's only 5 minutes away - to drop off Doreen's items. It was a nice walk (yes, it is cold here but not raining) and felt great to get outside. I just dropped off what I needed and walked back then got settled again in the waiting room.
1:30pm Update
Thank goodness I feel relaxed and know Doreen is in great hands, so I was not anxious when 1:00pm came and went as I knew they would call when ready, and sure enough the phone range right at 1:30. Surgery is still going on as expected. Expecting another update in a few hours followed by a visit from Dr. Lenke after the surgery is done. Praise Jesus!
3:30pm Update
Received another call. They are closing her up, waking her up, and taking her to the recovery room. I should hear final updates and next steps in the next 1 - 2 hours. It's been a long day but so far everything has gone well. I'm looking forward to hearing the final updates and seeing her.
Thank goodness for books. Been relaxing and reading to pass the time when I'm not sharing updates on the phone or email.
4:45pm Update
Saw Dr. Lenke and he told me the surgery went really well - straightened her up quite a bit and she came out well as well. She is being moved to ICU and I can visit in about an hour.
6:00pm Update - We're Done! (Or, Just Beginning...)
We're done ... I got to see her. Obviously looking rough after a full day under and on her stomach, but she was lucid and could speak softly. She got to hear her mom and dad and daughter. The only hitch I know of is that she was feeling a lot of pain after the surgery. They didn't have the push-button administered yet and were working on it. I hope they can manage it but we also know it will get a little rougher before it gets better and are ready for the road ahead.
I left due to the shift change to grab a bite and update this. I'll go back to see her tonight and then visit in the morning. The surgical team will meet with her then and determine if she can be moved to a hospital room or needs to stay in ICU longer.
Thanks everyone, been a day ...
Jeremy
Sunday, November 27, 2011
Final Countdown
Slept so-so last night. I kept waking up thinking I over slept and missed my Monday 5:30a check in at the hospital. Jeremy made a delicious breakfast: scrambled eggs with Canadian bacon, whole wheat toast, a honeycrip apple and coffee. My last breakfast on "this side" meaning pre-op. We are so happy to be at the Lodge where he can cook in a big kitchen.
How am I feeling right now? Still excited but I'm ready to get this over and done with and am tired of waiting.
I enjoyed our time at the Missouri History Museum but because I got really tired, we left before seeing all the exhibits. I think I'm simply exhausted from all of the rushed planning that started when I got the call for the earlier surgery date.
I learned a few things today:
1. Having the central line prevents me from raising my right arm above shoulder height without being in sharp pain. Learned this lesson while Jeremy was trying his best to help me put on a shirt this morning.
2. Having the central line prevents me from blow drying my hair while styling with a brush. I can multi-task many things, but simply cannot do my hair with one hand. Jeremy was a trooper and helped me out. :-)
3. Walking from the museum to the car in thirty-something degree weather is quite painful in the central line area because of shivering and tightening up my shoulders.
4. MOST IMPORTANT LESSON! Didja know that Press 'n Seal, you know the stuff that is like Saran Wrap, things you normally use in the kitchen... well, it makes a fabulous water barrier to cover a central line while taking a shower! Who knew?
What's left on my To Do list:
1. Evening and morning shower with special soap surgeon gave me
2. Eat turkey sandwich at 10p to help with stabilizing hypoglycemia
3. Take Valium
4. Sleep
5. Show up at hospital
6. Sleep
7. Wake up on the "other side"!
Proverbs 3:5-6
Trust in the LORD with all your heart
and lean not on your own understanding;
in all your ways submit to him,
and he will make your paths straight.
I humbly ask for you to continue to pray for me and especially ask for you to pray for Dr. Lenke and his team to be well rested this evening and focused tomorrow. Mostly importantly, please pray for Jeremy to remain strong and for God to bless him with peace and comfort.
See you tomorrow! :-)
How am I feeling right now? Still excited but I'm ready to get this over and done with and am tired of waiting.
I enjoyed our time at the Missouri History Museum but because I got really tired, we left before seeing all the exhibits. I think I'm simply exhausted from all of the rushed planning that started when I got the call for the earlier surgery date.
I learned a few things today:
1. Having the central line prevents me from raising my right arm above shoulder height without being in sharp pain. Learned this lesson while Jeremy was trying his best to help me put on a shirt this morning.
2. Having the central line prevents me from blow drying my hair while styling with a brush. I can multi-task many things, but simply cannot do my hair with one hand. Jeremy was a trooper and helped me out. :-)
3. Walking from the museum to the car in thirty-something degree weather is quite painful in the central line area because of shivering and tightening up my shoulders.
4. MOST IMPORTANT LESSON! Didja know that Press 'n Seal, you know the stuff that is like Saran Wrap, things you normally use in the kitchen... well, it makes a fabulous water barrier to cover a central line while taking a shower! Who knew?
What's left on my To Do list:
1. Evening and morning shower with special soap surgeon gave me
2. Eat turkey sandwich at 10p to help with stabilizing hypoglycemia
3. Take Valium
4. Sleep
5. Show up at hospital
6. Sleep
7. Wake up on the "other side"!
Proverbs 3:5-6
Trust in the LORD with all your heart
and lean not on your own understanding;
in all your ways submit to him,
and he will make your paths straight.
I humbly ask for you to continue to pray for me and especially ask for you to pray for Dr. Lenke and his team to be well rested this evening and focused tomorrow. Mostly importantly, please pray for Jeremy to remain strong and for God to bless him with peace and comfort.
See you tomorrow! :-)
Saturday, November 26, 2011
Packing Pre-Op Items
Having another low-key day and loving it! :-) I took a pain med last night and slept like a rock. Although I woke up at 5:30a, I fell asleep before 9p last night so I am well rested. The area around the line is really sore but I am thankful I slept as well as I did. I did some of my physical therapy exercises this morning in bed too. Jeremy made a yummy breakfast of whole grain waffles with rhubarb jam, a honeycrisp apple (my absolute favorite) with all-natural peanut butter and coffee. Did I mention Jeremy is the breakfast guru in our family?
Decided to start packing some of the pre-op items I won't be able to wear after Monday like non-button-down shirts, jeans, etc. This will be one less thing for Jeremy to pack when we head home. My wardrobe post-op will be button-down shirts and sweat pants for several weeks. I took some time this morning and read through the packet of information Dr. Lenke's nurse gave me. When I saw Dr. Lenke earlier in the week, I asked him for an anti-anxiety pill for Sunday evening. Dr. Lenke said, "I'll give you a Valium." Jeremy said, "Can I have one too?" LOL!
While I'm doing some paperwork housekeeping, Jeremy is typing away at the final edits of his first book which is due, like now. He inked his second book deal days before we left for St. Louis and he needs to start on the new book in a couple of weeks. God is very abundant! Hopefully, Jeremy's writing will provide a nice distraction for him from the upcoming days.
We decided to go on a quick walk this afternoon, about 2 miles, through Forest Park before it started raining. It is such a beautiful park. On our way back to the Lodge we saw a sign for a pub at the golf course and stopped in for a bite to eat. It was quite yummy. We watched Life in a Day on Netflix, interesting documentary of people across the globe who filmed their lives on July 24, 2010 and it was condensed into a film. My back is quite sore at the moment. Rain started and we might see some snow flurries tonight.
I snacked on some sugar snap peas which are always a yummy treat. Dinner was veggie barley soup with a Greek salad and leftover baguette. I also had a little dish of cornbread stuffing. Super tasty!
Warmly,
Doreen
Decided to start packing some of the pre-op items I won't be able to wear after Monday like non-button-down shirts, jeans, etc. This will be one less thing for Jeremy to pack when we head home. My wardrobe post-op will be button-down shirts and sweat pants for several weeks. I took some time this morning and read through the packet of information Dr. Lenke's nurse gave me. When I saw Dr. Lenke earlier in the week, I asked him for an anti-anxiety pill for Sunday evening. Dr. Lenke said, "I'll give you a Valium." Jeremy said, "Can I have one too?" LOL!
While I'm doing some paperwork housekeeping, Jeremy is typing away at the final edits of his first book which is due, like now. He inked his second book deal days before we left for St. Louis and he needs to start on the new book in a couple of weeks. God is very abundant! Hopefully, Jeremy's writing will provide a nice distraction for him from the upcoming days.
We decided to go on a quick walk this afternoon, about 2 miles, through Forest Park before it started raining. It is such a beautiful park. On our way back to the Lodge we saw a sign for a pub at the golf course and stopped in for a bite to eat. It was quite yummy. We watched Life in a Day on Netflix, interesting documentary of people across the globe who filmed their lives on July 24, 2010 and it was condensed into a film. My back is quite sore at the moment. Rain started and we might see some snow flurries tonight.
I snacked on some sugar snap peas which are always a yummy treat. Dinner was veggie barley soup with a Greek salad and leftover baguette. I also had a little dish of cornbread stuffing. Super tasty!
Warmly,
Doreen
Friday, November 25, 2011
Making My List & Checking It Twice
All done with the central line and it feels odd. The entire procedure lasted 10 minutes. I was more nervous about the line than the surgery because I was awake during today's procedure. I could have done without hearing the doctor telling the intern what to do; just wanted to be in my own little peaceful world.
For those who are unfamiliar with the process, an IV was inserted into the back of my hand where a "happy cocktail" was injected to relax me and then contrast was injected. I was laying under an x-ray machine so the doctor could see where the contrast traveled up my arm and in my clavicle area. An incision was made, a catheter was inserted and then they stitched me up leaving two wire/tube thingies hanging out of the incision. While I'm in the hospital, all my meds will be delivered into the line which minimizes the need for me to be stuck numerous times if I didn't have the line.
It is another beautiful, sunny day and the high will be near 60. We plan to return to the specialty grocer and pick up a few items: cheeses, prosciutto, baguette, etc. Tomorrow is supposed to rain all day so we'll enjoy watching some movies. Sunday is calling for snow and our plan is to go to the History Museum.
While my To-Do list is dwindling down, Jeremy's list is ramping up.
Have any of you ventured out to the Black Friday madness? Hope you got some great deals!
Warmly,
Doreen
For those who are unfamiliar with the process, an IV was inserted into the back of my hand where a "happy cocktail" was injected to relax me and then contrast was injected. I was laying under an x-ray machine so the doctor could see where the contrast traveled up my arm and in my clavicle area. An incision was made, a catheter was inserted and then they stitched me up leaving two wire/tube thingies hanging out of the incision. While I'm in the hospital, all my meds will be delivered into the line which minimizes the need for me to be stuck numerous times if I didn't have the line.
It is another beautiful, sunny day and the high will be near 60. We plan to return to the specialty grocer and pick up a few items: cheeses, prosciutto, baguette, etc. Tomorrow is supposed to rain all day so we'll enjoy watching some movies. Sunday is calling for snow and our plan is to go to the History Museum.
While my To-Do list is dwindling down, Jeremy's list is ramping up.
Have any of you ventured out to the Black Friday madness? Hope you got some great deals!
Warmly,
Doreen
Thursday, November 24, 2011
Abundantly Thankful!
Happy Thanksgiving, Everyone!
My holiday started a bit earlier than normal when I woke up today at 3:22am. I've been waking up at odd times over the past several weeks. As I lay in bed trying to remember where I was, I suddenly realized our room was filled with the wonderful aroma of a turkey roasting. No, I wasn't dreaming. We are staying at the Barnes Lodge (long-term housing for patients and their families) on the Washington University campus where the hospital is located. One of the volunteers, Carla, came to the Lodge at 1am this morning to cook a wonderful Thanksgiving feast for everyone staying here. I drifted in and out of sleep for the next few hours and when Jeremy woke up, he said, "Is that turkey I smell?"
Carla prepared an amazing spread: roast beef, ham, turkey, sweet potatoes, green beans, collards, rolls, mac & cheese, potato salad, stuffing, desserts, etc. Before our meal, Carla asked all of us to form a circle, hold hands, and share something we are thankful for. I am thankful for my family and friends, the meal Carla prepared with much love, the fellowship we are experiencing at the Lodge, the friendships I've developed with some people on the National Scoliosis Foundation group (some of whom are Lenke's patients and I was able to meet two of them), and above all, I thank God for this journey He is guiding me through.
Today was the first sunny day since we arrived here; such a beautiful day! Jeremy and I walked for a few miles and it was so refreshing to be in the crisp, cool air. We are at the east end of Forest Park (kind of like a mini Central Park) and decided to walk through the park. As soon as we crossed the street to get to the park, I heard muffled music. We were drawn by the sounds and followed it. To our surprise, it led us to a skating rink where Christmas music was playing! It was an ideal, drama-free day.
I pray all of you had a blessed day today.
Warmly,
Doreen
My holiday started a bit earlier than normal when I woke up today at 3:22am. I've been waking up at odd times over the past several weeks. As I lay in bed trying to remember where I was, I suddenly realized our room was filled with the wonderful aroma of a turkey roasting. No, I wasn't dreaming. We are staying at the Barnes Lodge (long-term housing for patients and their families) on the Washington University campus where the hospital is located. One of the volunteers, Carla, came to the Lodge at 1am this morning to cook a wonderful Thanksgiving feast for everyone staying here. I drifted in and out of sleep for the next few hours and when Jeremy woke up, he said, "Is that turkey I smell?"
Carla prepared an amazing spread: roast beef, ham, turkey, sweet potatoes, green beans, collards, rolls, mac & cheese, potato salad, stuffing, desserts, etc. Before our meal, Carla asked all of us to form a circle, hold hands, and share something we are thankful for. I am thankful for my family and friends, the meal Carla prepared with much love, the fellowship we are experiencing at the Lodge, the friendships I've developed with some people on the National Scoliosis Foundation group (some of whom are Lenke's patients and I was able to meet two of them), and above all, I thank God for this journey He is guiding me through.
Today was the first sunny day since we arrived here; such a beautiful day! Jeremy and I walked for a few miles and it was so refreshing to be in the crisp, cool air. We are at the east end of Forest Park (kind of like a mini Central Park) and decided to walk through the park. As soon as we crossed the street to get to the park, I heard muffled music. We were drawn by the sounds and followed it. To our surprise, it led us to a skating rink where Christmas music was playing! It was an ideal, drama-free day.
I pray all of you had a blessed day today.
Warmly,
Doreen
Wednesday, November 23, 2011
Green Light!
Dr. Lenke's office just called to say the insurance company changed their mind, approved the surgery, denied just the BMP portion and I'm all set as planned! GOD IS GREAT! Dr. Lenke will use the BMP as planned and the hospital will pay for the BMP which costs $12,000 per unit and Dr. Lenke expects to use 6 units.
This has been an intense 24 hours to say the least. I'll continue to submit to Him and ask for continued peace, strength and comfort. Jeremy has been an incredible pillar of strength through all this (not just today) with such a loving, positive attitude. I am blessed to have such a wonderful husband, a wonderful family and dear friends.
Warmly,
Doreen
This has been an intense 24 hours to say the least. I'll continue to submit to Him and ask for continued peace, strength and comfort. Jeremy has been an incredible pillar of strength through all this (not just today) with such a loving, positive attitude. I am blessed to have such a wonderful husband, a wonderful family and dear friends.
Warmly,
Doreen
The Plot Thickens
Met with Dr. Lenke this morning who is shocked that our insurance is not cooperating. In fact, he said he has never experienced this before. It seems the explanation of denial was lost in several translations, but now boils down to this. Dr. Lenke always uses a product called BMP (bone morphogenetic protein) because it provides a faster, stronger fusion for his patients. Dr. Lenke forewarned me back in September when we met that most insurance companies deny the BMP portion of the surgery. Washington University absorbs the BMP cost. My insurance has decided to deny the entire surgery because of the BMP; so they are not just denying the BMP portion but everything.
What makes things more challenging for me is that we must have some sort of "surgery only" approval from the insurance company today before close of business because of the holiday tomorrow and Lenke's office being closed on Friday. The clock is literally ticking in the final countdown. Jeremy has escalated as far as he can on our end and now we are waiting for Dr. Lenke to have the peer-to-peer chat with the insurance company directly.
I absolutely hate playing the "What If" game, but we need to be realistic at this stage. If the insurance just doesn't respond today with an approval, everything is off and I'm back on the waiting list for a new surgery date.
Will keep you posted.
Warmly,
Doreen
What makes things more challenging for me is that we must have some sort of "surgery only" approval from the insurance company today before close of business because of the holiday tomorrow and Lenke's office being closed on Friday. The clock is literally ticking in the final countdown. Jeremy has escalated as far as he can on our end and now we are waiting for Dr. Lenke to have the peer-to-peer chat with the insurance company directly.
I absolutely hate playing the "What If" game, but we need to be realistic at this stage. If the insurance just doesn't respond today with an approval, everything is off and I'm back on the waiting list for a new surgery date.
Will keep you posted.
Warmly,
Doreen
Tuesday, November 22, 2011
Settled in St. Louis; however,
We arrived in St. Louis and are settled in. Today was full of pre-op tests including one big surprise. In the middle of getting my x-rays, Dr. Lenke's nurse walked in and said she was having a bit of an issue with my insurance. Three words I was not expecting to hear from her were, "Insurance denied surgery." That statement was immediately followed by, "You need to lay on your stomach so we can push your spine straight for the last x-ray."
I cannot begin to explain how I feel right now. We are getting different answers from the insurance company at this point. The insurance company told me and Jeremy that they are missing documents while they told the nurse they determined that the surgery will not benefit me.
I continue to pray that God guide me through this journey. Will post more when details unfold.
Warmly,
Doreen
I cannot begin to explain how I feel right now. We are getting different answers from the insurance company at this point. The insurance company told me and Jeremy that they are missing documents while they told the nurse they determined that the surgery will not benefit me.
I continue to pray that God guide me through this journey. Will post more when details unfold.
Warmly,
Doreen
Saturday, November 19, 2011
The past few days has been a whirlwind of activity. I passed the pulmonary function test with flying colors, but wasn't too happy to learn I've shrunk another inch in height since September. Total height loss this year is 4 inches. Dr. Lenke expects I'll get most of that height back so it's all good.
It's hard to believe that in 9 days I'll be "on the otherside."
So much to do, so little time!
Warmly,
Doreen
It's hard to believe that in 9 days I'll be "on the otherside."
So much to do, so little time!
Warmly,
Doreen
Wednesday, November 16, 2011
Talk About Bumping Up a Surgery Date!
It is official, my surgery date was rescheduled from Aug 1, 2012 to Nov 28, 2011!!!! In 12 days I will be "on the other side!" It has been a flurry of phone calls and planning throughout the day. My period of pre-op tests starts this week with a pulmonary function test. I am literally beside myself with excitement. I am incredibly humbled by the outpouring of help from friends and family. PRAISE GOD, BABY JESUS! :-)
Warmly,
Doreen
Warmly,
Doreen
Monday, October 31, 2011
Just Keep Walking, Just Keep Walking!
My walking routine has improved a lot since I'm now able to walk 3.5 miles in 1 hour. I would think that walking 14 - 17 miles per week would make me lose weight, but not so. One of Forteo's side effects is weight gain and I've gained 9 pounds since Aug; I was 133# in July. So at what I thought was my usual height of 5'10" at 133#, I was told by all my docs that I need to gain weight before the surgery. Forteo's just helping me along.
I'm getting much better with the Forteo injections, very little bruising. Before every injection I pray that God bless my bones to grow stronger with the medicine so I have a successful surgery. I continue to pray for a new surgery date before Aug 1st.
Warmly,
Doreen
I'm getting much better with the Forteo injections, very little bruising. Before every injection I pray that God bless my bones to grow stronger with the medicine so I have a successful surgery. I continue to pray for a new surgery date before Aug 1st.
Warmly,
Doreen
Saturday, October 22, 2011
Missing Family Day of Fun
For those of you don't know about my daughter's business http://www.lizziemariecuisine.com/, today marks her 4th year appearing at the Taste of Atlanta event where she is judging this year instead of cooking. I realized a couple of months ago, I would be in no condition to go with her because of my need to lay down every afternoon on a heating pad to try and relieve some of my back pain. Taste of Atlanta is a super fun event for our family and I am a bit bummed I'm home alone this afternoon. I'm confident Jeremy is taking some great shots of Lizzie at the event which I'll add to her website next week.
I talked with one of Dr. Lenke's patients who explained how she received her phone call with a cancellation opportunity to bump up her surgery date. I was a bit surprised to learn that her new surgery date was 1 1/2 weeks away from the day she received the phone call. I didn't realize dates could be moved up so quickly. We reached out to our dear friends and explained the situation how I'm on a cancellation list and regardless of when the surgery occurs (Aug 1 or sooner), could they help us by having Lizzie stay with them during my surgery. It was a HUGE relief to not only have them say yes, but to have a few plans in place now for when I need to go to St. Louis.
Rib pain is still at an elevated level this week, making sleeping and sitting a challenge. It's not good to literally lay around all day long, but it hurts so bad to just sit because of ribs pressing into pelvis. Oh well, I'll get through this.
Warmly,
Doreen
I talked with one of Dr. Lenke's patients who explained how she received her phone call with a cancellation opportunity to bump up her surgery date. I was a bit surprised to learn that her new surgery date was 1 1/2 weeks away from the day she received the phone call. I didn't realize dates could be moved up so quickly. We reached out to our dear friends and explained the situation how I'm on a cancellation list and regardless of when the surgery occurs (Aug 1 or sooner), could they help us by having Lizzie stay with them during my surgery. It was a HUGE relief to not only have them say yes, but to have a few plans in place now for when I need to go to St. Louis.
Rib pain is still at an elevated level this week, making sleeping and sitting a challenge. It's not good to literally lay around all day long, but it hurts so bad to just sit because of ribs pressing into pelvis. Oh well, I'll get through this.
Warmly,
Doreen
Wednesday, October 19, 2011
Such a Pain in the ***!
Did you think I was going to say something other than "pain in the rib?" :)
The past two evenings I've woken up because of rib pain which has increased considerably over the past several days, a Forteo side effect. After last night's dinner, I settled into the couch with many pillows to watch a movie with the family. Afterwards, Jeremy had to carefully help me off the couch because my ribs hurt so badly. The thought crossed my mind to take a pain pill, but I didn't because I've been able to get to sleep fairly quickly the past few weeks. Had I taken a pain pill, I would not have woken up at 3a. I'll probably take a pain pill tonight.
That's the highlight of this week so far.
Warmly,
Doreen
The past two evenings I've woken up because of rib pain which has increased considerably over the past several days, a Forteo side effect. After last night's dinner, I settled into the couch with many pillows to watch a movie with the family. Afterwards, Jeremy had to carefully help me off the couch because my ribs hurt so badly. The thought crossed my mind to take a pain pill, but I didn't because I've been able to get to sleep fairly quickly the past few weeks. Had I taken a pain pill, I would not have woken up at 3a. I'll probably take a pain pill tonight.
That's the highlight of this week so far.
Warmly,
Doreen
Tuesday, October 11, 2011
Peaceful Sleep Makes a Happy Camper
I've finally moved beyond the not-being-able-to-sleep phase and have had very good sleep for several evenings without taking a pill. Whew! What a refreshing change to wake up feeling well rested as compared to waking up feeling exhausted.
Some updates on my Forteo friend. She's moved into the front area of my ribs, but that's okay, Forteo has a short-term lease in this dwelling. I don't mind the renovations she's making during her stay. While my pain is at a high level, my spirits remain higher. I am really focusing on what I am able to do as compared to what I'm no longer able to do. My daily walking route is now at 2 miles. My energy levels are highest before 1p. I've noticed I'm "tipping" more to the right when standing or walking. I try to keep Lizzie or Jeremy on my right side as my pillars of strength so I can literally lean on them.
Keep praying for the phone call, "Doreen, we have a new surgery date..." :)
Warmly,
Doreen
Some updates on my Forteo friend. She's moved into the front area of my ribs, but that's okay, Forteo has a short-term lease in this dwelling. I don't mind the renovations she's making during her stay. While my pain is at a high level, my spirits remain higher. I am really focusing on what I am able to do as compared to what I'm no longer able to do. My daily walking route is now at 2 miles. My energy levels are highest before 1p. I've noticed I'm "tipping" more to the right when standing or walking. I try to keep Lizzie or Jeremy on my right side as my pillars of strength so I can literally lean on them.
Keep praying for the phone call, "Doreen, we have a new surgery date..." :)
Warmly,
Doreen
Monday, October 3, 2011
Forteo: Friend or Foe
As I enter my 5th week of Forteo injections, I've been experiencing a typical side effect of achy knees and ankles. A few days ago I lengthened my daily walk a little bit which includes one of the steepest hills in the neighborhood. That same evening, I started experiencing an intense lumbar ache above and beyond my "normal" daily pain. Have you ever had the flu where your body aches terribly? This is how it feels in my lower back now. I spoke with my endocrinologist's office last week who confirmed the aches are a side effect of Forteo.
I've read other Forteo patients say the aches are an indication that new bone is forming. As much as it hurts, I'm thankful for this experience and keep telling myself the aches are a good thing. Forteo is my friend, Forteo is my friend (chant to the rhythm "There's no place like home). It's a painful but positive relationship, or should I say it is a positively painful relationship? :)
I realized the other day I've been exercising everyday nonstop since mid-July. The exercise has been prescribed by my local physical therapist and approved by Dr. Lenke's physical therapist as well. I've been instructed to walk every day at a minimum of 45 minutes to 1 hour because Dr. Lenke wants his patients in top cardiac condition. Jeremy suggested I take one day per week off from exercise because my body probably needs rest to recover. I simply didn't realize I was over-exercising and should know better. Yesterday was the first day I did zero exercise and I really felt crummy laying around all day. It was a not-so-good-day as far as pain.
I have an exhausting daily routine now: physical therapy exercises followed by yoga and then walking. You would think I'd easily fall asleep at night. Not so much. Almost two weeks ago I've had difficulty falling asleep; laying in bed for 2 - 3 hours begging for sleep. My primary doctor said I have "sleep initiation" issues which are caused by the stress of the surgery journey. He prescribed sleeping pills but recommended I not get into the habit of taking one every night. They've helped me sleep very well the past few evenings, but I won't take one tonight and see how I do.
Since my goal is to NOT take a pain pill every time I hurt because the narcotics can be addictive, I pray for God to pull me through the pain. I'm trying not to bellyache (complain) about my pain but want to candidly diarize my journey in hopes that it provide insight to folks who may have similar experiences. I keep reminding myself that God does not give us situations that we cannot handle. Thank you, Jesus, for my journey.
Warmly,
Doreen
I've read other Forteo patients say the aches are an indication that new bone is forming. As much as it hurts, I'm thankful for this experience and keep telling myself the aches are a good thing. Forteo is my friend, Forteo is my friend (chant to the rhythm "There's no place like home). It's a painful but positive relationship, or should I say it is a positively painful relationship? :)
I realized the other day I've been exercising everyday nonstop since mid-July. The exercise has been prescribed by my local physical therapist and approved by Dr. Lenke's physical therapist as well. I've been instructed to walk every day at a minimum of 45 minutes to 1 hour because Dr. Lenke wants his patients in top cardiac condition. Jeremy suggested I take one day per week off from exercise because my body probably needs rest to recover. I simply didn't realize I was over-exercising and should know better. Yesterday was the first day I did zero exercise and I really felt crummy laying around all day. It was a not-so-good-day as far as pain.
I have an exhausting daily routine now: physical therapy exercises followed by yoga and then walking. You would think I'd easily fall asleep at night. Not so much. Almost two weeks ago I've had difficulty falling asleep; laying in bed for 2 - 3 hours begging for sleep. My primary doctor said I have "sleep initiation" issues which are caused by the stress of the surgery journey. He prescribed sleeping pills but recommended I not get into the habit of taking one every night. They've helped me sleep very well the past few evenings, but I won't take one tonight and see how I do.
Since my goal is to NOT take a pain pill every time I hurt because the narcotics can be addictive, I pray for God to pull me through the pain. I'm trying not to bellyache (complain) about my pain but want to candidly diarize my journey in hopes that it provide insight to folks who may have similar experiences. I keep reminding myself that God does not give us situations that we cannot handle. Thank you, Jesus, for my journey.
Warmly,
Doreen
Tuesday, September 27, 2011
Before Xrays
For your viewing pleasure; before xrays
As you can see, I have what is called an "S" curve. The thoracic (middle spine) measures 70 degrees and the lumbar (lower spine) measures 68 degrees. The loss of 3" in height is a result of these two curves progressing. I'm looking forward to the day when I will update this blog entry to include both, before and after, xrays! :)
Warmly,
Doreen
As you can see, I have what is called an "S" curve. The thoracic (middle spine) measures 70 degrees and the lumbar (lower spine) measures 68 degrees. The loss of 3" in height is a result of these two curves progressing. I'm looking forward to the day when I will update this blog entry to include both, before and after, xrays! :)
Warmly,
Doreen
Mission accomplished!
I met with Dr. Lenke last week; he said he can help me and I am scheduled for surgery Aug 1, 2012. I'm on the cancellation list and feel good that the surgery date will be bumped up. I was able to meet with two ladies from the Scoliosis Foundation forum who just so happened to have morning appointments with Dr. Lenke for their 1 year follow ups. Talking with them really helped pass the time and it was very comforting. Nancy, who is in her late 50's, had similar surgery and is fused to her sacrum. It was good for me to see her because a lot of folks think there are major flexibility limitations when fused to the sacrum, but you'd never know Nancy had surgery at all just looking at her. Total time in Lenke's office was 5 hours! I was told to expect 3 hour wait time when I scheduled my appointment last month.
Dr. Lenke said that I am very lucky my curves were right at his cut-off (70 degrees for new patients, he specializes in severe cases only) otherwise, he would have referred me to someone else. It is interesting to see his recommendations compared to the Atlanta surgeon. Dr. Lenke was very pleased that I am on Forteo and said that even though I just started Forteo 3 weeks ago, that will not impact my wait time for surgery. He said if my surgery date moves up, his will still operate regardless of how long I'm on Forteo. The Atlanta surgeon measured me at T72* and L58*, Lenke measured me at T70* and L68*.
Lenke gave me a choice of surgeries: Option #1 fuse T4 - L4 (bottom of neck to bottom of lumbar area of spine) and have to come back for additional surgery to replace L5 within 2, 5 or 10 years (the L5 disc always wears out quickly in a full fusion from bearing the full weight of the spine). Option #2 fuse T4 - sacrum (bottom of neck down entire spine and anchored into my sacrum) and no need for future surgery. My response, "To the sacrum will be great... I don't want to have to come back, no offense." Dr. Lenke and his team all chuckled at that. Lenke explained most patients opt for the sacrum. This link shows which vertebrae will be fused http://mississaugachiro.com/interactive_flash_spinal_nerve_chart.php
What does it mean to be fused to the sacrum? I will be able to sit; however I will have limitation with not being able to bend over. Squatting will be necessary to, let's say, pick up something from the floor. Will I walk like the Tin Man? No. I could care less about some limitations because all of Lenke's patients I've talked with who are fused to the sacrum have said all their pain is gone, that they occasionally experience muscle tightness. I'm still conservative with my pain goals. Do I expect to be pain free? No, but I am praying that some pain will be alleviated and anything beyond that is gravy.
Dr. Lenke will do the following procedures in one surgery:
1. T4 - sacrum fusion: Implanting two titanium rods and multiple screws along both sides of spine. Here is a little video showing how a fusion is done (animated, no gorey stuff) http://www.youtube.com/watch?v=OfWQr_2yF9g&feature=player_embedded
2. TLIF (Transforaminal Lumbar Interbody Fusion): an anterior surgery from a posterior approach so no need for a second anterior surgery as the Atlanta surgeon recommended. Dr. Lenke pioneered this approach and teaches surgeons how to do this procedure. This is where he will anchor the bottom of the fusion into the sacrum.
3. Perform about 5 to 8 Smith-Peterson osteotomies: there are 3 levels of osteotomies and I need the "easiest" level I. Osteotomies are removal of bone from the vertebrae which cause a lot of blood loss; however, this creates new bone growth for a stronger fusion.
4. Implant 2 cages at L5 with BMP: Cages are little metal devices that provide a stable platform for the weak L5 disk. One cage will be placed above and one below L5. BMP (bone morphogentic protein to build a stronger fusion) is a material that gives a 23% stronger, faster fusion and Dr. Lenke won't do any surgery without (think of it as super glue). BMP comes in a kit and each kit costs between $10k - $12k. Lenke said I will need 6 kits. Most insurance companies deny BMP because of the cost. Washington University Barnes Jewish Hospital has been absorbing the cost for patients; this is where I'll have surgery. The hospital and Dr. Lenke feel that the benefits of BMP keep patients from having future fusion issues and result in faster recovery.
These surgeries are incredibly expensive and average around $250k. I'm looking forward to taking advantage of our health insurance policy. :) Dr. Lenke only does 30 adult scoliosis surgeries per year. He also leads the pediatric spinal department at Shriners Children Hospital in St. Louis. He is definitely a busy man which is why I have peace knowing the best-of-the-best will be doing my surgery.
Lenke estimates the surgery to last 6 - 8 hours (the Atlanta surgeon suggested 8 - 10 hours for posterior surgery and a 4 - 5 anterior surgery 3 months later). On Lenke's scale of difficulty 1 - 10, he ranked me at 1.5 (1 being the least challenging, 10 being the most challenging). The Atlanta surgeon told me she ranked me as a 6 on her scale. The Atlanta surgeon turned out to be a bit more conservative for my needs and there is nothing wrong with that because it has ultimately led me to Lenke's care.
Lenke expects to get a 70% - 75% correction! I simply cannot fathom that and will be over the moon when it happens. It's hard for me to comprehend any correction since I've been crooked for so long. Lenke said 80% of his patients have significant pain reduction post-op, 12% maintain current pain levels and 8% actually have worse pain. I'll spend about a week in the hospital and Lenke suggested I stay in the adjoining hotel for a few days before heading home. I will be up and walking the day after surgery - amazing! Full recovery will take 1 - 2 years.
I'm well aware there are risks with any procedure. I explained to Lenke my goals are to stop the progression and hopefully alleviate some of my pain. Here is Lenke's website, the Patient Stories tab has some amazing journeys http://www.spinal-deformity-surgeon.com/
I am VERY relieved that I have a plan in place with Lenke. God is good. Thank you so very much for praying not only for me, Jeremy and Lizzie, but for Dr. Lenke and his team. God is creating miracles through Lenke's hands.
Warmly,
Doreen
Dr. Lenke said that I am very lucky my curves were right at his cut-off (70 degrees for new patients, he specializes in severe cases only) otherwise, he would have referred me to someone else. It is interesting to see his recommendations compared to the Atlanta surgeon. Dr. Lenke was very pleased that I am on Forteo and said that even though I just started Forteo 3 weeks ago, that will not impact my wait time for surgery. He said if my surgery date moves up, his will still operate regardless of how long I'm on Forteo. The Atlanta surgeon measured me at T72* and L58*, Lenke measured me at T70* and L68*.
Lenke gave me a choice of surgeries: Option #1 fuse T4 - L4 (bottom of neck to bottom of lumbar area of spine) and have to come back for additional surgery to replace L5 within 2, 5 or 10 years (the L5 disc always wears out quickly in a full fusion from bearing the full weight of the spine). Option #2 fuse T4 - sacrum (bottom of neck down entire spine and anchored into my sacrum) and no need for future surgery. My response, "To the sacrum will be great... I don't want to have to come back, no offense." Dr. Lenke and his team all chuckled at that. Lenke explained most patients opt for the sacrum. This link shows which vertebrae will be fused http://mississaugachiro.com/interactive_flash_spinal_nerve_chart.php
What does it mean to be fused to the sacrum? I will be able to sit; however I will have limitation with not being able to bend over. Squatting will be necessary to, let's say, pick up something from the floor. Will I walk like the Tin Man? No. I could care less about some limitations because all of Lenke's patients I've talked with who are fused to the sacrum have said all their pain is gone, that they occasionally experience muscle tightness. I'm still conservative with my pain goals. Do I expect to be pain free? No, but I am praying that some pain will be alleviated and anything beyond that is gravy.
Dr. Lenke will do the following procedures in one surgery:
1. T4 - sacrum fusion: Implanting two titanium rods and multiple screws along both sides of spine. Here is a little video showing how a fusion is done (animated, no gorey stuff) http://www.youtube.com/watch?v=OfWQr_2yF9g&feature=player_embedded
2. TLIF (Transforaminal Lumbar Interbody Fusion): an anterior surgery from a posterior approach so no need for a second anterior surgery as the Atlanta surgeon recommended. Dr. Lenke pioneered this approach and teaches surgeons how to do this procedure. This is where he will anchor the bottom of the fusion into the sacrum.
3. Perform about 5 to 8 Smith-Peterson osteotomies: there are 3 levels of osteotomies and I need the "easiest" level I. Osteotomies are removal of bone from the vertebrae which cause a lot of blood loss; however, this creates new bone growth for a stronger fusion.
4. Implant 2 cages at L5 with BMP: Cages are little metal devices that provide a stable platform for the weak L5 disk. One cage will be placed above and one below L5. BMP (bone morphogentic protein to build a stronger fusion) is a material that gives a 23% stronger, faster fusion and Dr. Lenke won't do any surgery without (think of it as super glue). BMP comes in a kit and each kit costs between $10k - $12k. Lenke said I will need 6 kits. Most insurance companies deny BMP because of the cost. Washington University Barnes Jewish Hospital has been absorbing the cost for patients; this is where I'll have surgery. The hospital and Dr. Lenke feel that the benefits of BMP keep patients from having future fusion issues and result in faster recovery.
These surgeries are incredibly expensive and average around $250k. I'm looking forward to taking advantage of our health insurance policy. :) Dr. Lenke only does 30 adult scoliosis surgeries per year. He also leads the pediatric spinal department at Shriners Children Hospital in St. Louis. He is definitely a busy man which is why I have peace knowing the best-of-the-best will be doing my surgery.
Lenke estimates the surgery to last 6 - 8 hours (the Atlanta surgeon suggested 8 - 10 hours for posterior surgery and a 4 - 5 anterior surgery 3 months later). On Lenke's scale of difficulty 1 - 10, he ranked me at 1.5 (1 being the least challenging, 10 being the most challenging). The Atlanta surgeon told me she ranked me as a 6 on her scale. The Atlanta surgeon turned out to be a bit more conservative for my needs and there is nothing wrong with that because it has ultimately led me to Lenke's care.
Lenke expects to get a 70% - 75% correction! I simply cannot fathom that and will be over the moon when it happens. It's hard for me to comprehend any correction since I've been crooked for so long. Lenke said 80% of his patients have significant pain reduction post-op, 12% maintain current pain levels and 8% actually have worse pain. I'll spend about a week in the hospital and Lenke suggested I stay in the adjoining hotel for a few days before heading home. I will be up and walking the day after surgery - amazing! Full recovery will take 1 - 2 years.
I'm well aware there are risks with any procedure. I explained to Lenke my goals are to stop the progression and hopefully alleviate some of my pain. Here is Lenke's website, the Patient Stories tab has some amazing journeys http://www.spinal-deformity-surgeon.com/
I am VERY relieved that I have a plan in place with Lenke. God is good. Thank you so very much for praying not only for me, Jeremy and Lizzie, but for Dr. Lenke and his team. God is creating miracles through Lenke's hands.
Warmly,
Doreen
Monday, September 19, 2011
The Big Day
I'll be meeting Dr. Lenke in St. Louis this week. Excited and anxious. Praying that Dr. Lenke will be able to help me and schedules a surgery date (sooner than later). Not knowing when surgery will be scheduled has been driving me nuts. Wooooosaaaaah....
Warmly,
Doreen
Warmly,
Doreen
Monday, September 12, 2011
Hmmm, That's An Odd Sensation
The Forteo injections are good; today is injection #13. Only 717 injections to go! :) Yesterday, I experienced one of the common side effects, pain in my thighs. Have you ever had the flu and your body ached from deep within? That's how this pain feels. I spent a good part of the day yesterday in bed because sitting is painful. This laying around stuff is for the birds. My thighs are achy this morning and I decided that I'm not going to lay around and accept the pain. Lizzie and I went for a short walk through the neighborhood after I worked out this morning. Lizzie-Girl (one of our dogs) layed on my towel next to me while I did my exercises and yoga. It was very sweet to have her company. It is a beautiful cool and sunny morning. I'm looking forward to the fall season. It will soon be applesauce making time. :)
Lizzie and Jeremy have been very helpful with my growing need for help. This experience has humbled me as I'm not used to asking for help. We have a new routine every night since I started taking Forteo. At 9pm I get settled into bed and either Jeremy or Lizzie bring up the Forteo pen (which needs to be refrigerated) to me, I do my thing, and they bring it back downstairs and put back into frig. I've heard patients say they are able to avoid dizziness/nausea by doing the shot in bed at night.
Last night, I'm in bed, have my little needle and alcohol swabs ready, I'm in my jammies waiting patiently. I don't hear anyone coming. I wait a little longer, little longer... how could they forget me? ;) So I walk toward Lizzie's study and Jeremy's office which happen to be upstairs, just down the hall. I'm standing in the hall; look to my left and see Jeremy and look to my right and see Lizzie. I quietly asked, "Can someone bring me Forteo? Anyone? Anyone?" Lizzie laughs, "Mom, you are too cute!" She ran downstairs and brought it up.
It's really sweet how Lizzie wants to help with the injections and has learned how to do everything in the preparation of the shot except the actual injection (I prefer to do that myself). She does the swabbing of the Forteo pen tip and my injection site, attaches the needle, loads the medicine, removes needle caps (I inject and replace needle cap), then she removes capped needle and places in bio-hazard container.
I look forward to being "on the other side." This is what patients refer to as being post-op.
Warmly,
Doreen
Lizzie and Jeremy have been very helpful with my growing need for help. This experience has humbled me as I'm not used to asking for help. We have a new routine every night since I started taking Forteo. At 9pm I get settled into bed and either Jeremy or Lizzie bring up the Forteo pen (which needs to be refrigerated) to me, I do my thing, and they bring it back downstairs and put back into frig. I've heard patients say they are able to avoid dizziness/nausea by doing the shot in bed at night.
Last night, I'm in bed, have my little needle and alcohol swabs ready, I'm in my jammies waiting patiently. I don't hear anyone coming. I wait a little longer, little longer... how could they forget me? ;) So I walk toward Lizzie's study and Jeremy's office which happen to be upstairs, just down the hall. I'm standing in the hall; look to my left and see Jeremy and look to my right and see Lizzie. I quietly asked, "Can someone bring me Forteo? Anyone? Anyone?" Lizzie laughs, "Mom, you are too cute!" She ran downstairs and brought it up.
It's really sweet how Lizzie wants to help with the injections and has learned how to do everything in the preparation of the shot except the actual injection (I prefer to do that myself). She does the swabbing of the Forteo pen tip and my injection site, attaches the needle, loads the medicine, removes needle caps (I inject and replace needle cap), then she removes capped needle and places in bio-hazard container.
I look forward to being "on the other side." This is what patients refer to as being post-op.
Warmly,
Doreen
Tuesday, September 6, 2011
The Forteo Phase
I had a great meeting with the endocrinologist. He explained that mega doses of vitamins won't build bone and that there is only so much the body can absorb before the excess is passed as waste. The endo prescribed Forteo since there is an urgency to get surgery because both sides of ribs are now compressing into lungs and pelvis. My insurance approved the prescription and the Forteo phase has begun: daily injections for 2 years. I started injections last week and have not experienced any side effects.
Eli Lilly, the manufacturer of Foreo, is wrapping up their 10 year study on Forteo. Perhaps they will decide it is safe enough for people to cycle back on to it. The endo explained that vitamins will not maintain the new bone grown by Forteo and that I'll need to go on a maintenance drug. Reclast or Prolia are commonly prescribed; however, I'm learning Reclast has some nasty side effects (death).
Thanks for reading,
Doreen
Eli Lilly, the manufacturer of Foreo, is wrapping up their 10 year study on Forteo. Perhaps they will decide it is safe enough for people to cycle back on to it. The endo explained that vitamins will not maintain the new bone grown by Forteo and that I'll need to go on a maintenance drug. Reclast or Prolia are commonly prescribed; however, I'm learning Reclast has some nasty side effects (death).
Thanks for reading,
Doreen
Tuesday, August 23, 2011
To medicate or not to medicate, that is the question.
Early tomorrow morning I have an appointment with an endocrinologist. I have a lot of questions, in particular, will mega doses of Vitamin D, Calcium, Magnesium, Vitamin K, Strontium and Boron be more beneficial with reversing osteopenia than medication?
When the surgeon called to cancel the surgery, she explained my bone density results showed I am at the borderline of having osteoporosis. Healthy bone density is a range of 0 to 1, osteopenia is -1 to -2.4 and osteoporosis is -2.5 and beyond. The scores are measured by T and Z scores. My T is -2.4 and Z is -2.0 for my lumbar density. My hip and neck density is at the 97% and 99% normal range. So how is it, that the rest of my body has normal dense bone but the lumbar does not? Well, on the front page of the density results is a statement, "... the presence of severe dextroscoliosis of the lumbar spine may falsely elevate the bone mineral density." Ok, so how do I know the accuracy of my lumbar result considering scoliosis is present which is possibly skewing the results. So many questions.
There are a lot of medications available to slow down the loss of bone: Boniva, Actenol, Evista, Fosamax, etc. All medications have their pros and cons, but I'm not getting a warm fuzzy feeling about them. As far as I know (and my research just started very recently) there is one medication that actually promotes bone growth: Forteo. From what I've read and from patients I've talked to who are taking Forteo, this is the granddaddy of them all by providing very fast results which is especially beneficial to patients looking to have spinal surgery. You see, if a patient has osteopenia/porosis and undergoes spinal surgery, the hardware (rods and screws) that need to be implanted won't have solid, sturdy bone to anchor into. Curve correction won't be as good if the bone is soft in addition to potential future problems with the hardware coming loose.
I read that regardless of which type of bone medication a person takes, at some point, if they stop taking the med, their bone loss will return. In particular, Forteo is to be taken as a daily injection for 18 months to 2 years and no longer. Why? There are no long-term studies on the effects of taking Forteo beyond 2 years. Another question I have for the doctor: Can I take Forteo in conjunction with mega supplements so that when I cycle off Forteo, the supplements will maintain the new bone?
A blood test result from last year shows my vitamin D levels are low, healthy range is 20 - 100 and I'm at 33. Vitamin D is necessary for the proper absorption of calcium in the body. Could my density issue be something as simple as taking a boatload of vitamin D? We shall see.
Warmly,
Doreen
When the surgeon called to cancel the surgery, she explained my bone density results showed I am at the borderline of having osteoporosis. Healthy bone density is a range of 0 to 1, osteopenia is -1 to -2.4 and osteoporosis is -2.5 and beyond. The scores are measured by T and Z scores. My T is -2.4 and Z is -2.0 for my lumbar density. My hip and neck density is at the 97% and 99% normal range. So how is it, that the rest of my body has normal dense bone but the lumbar does not? Well, on the front page of the density results is a statement, "... the presence of severe dextroscoliosis of the lumbar spine may falsely elevate the bone mineral density." Ok, so how do I know the accuracy of my lumbar result considering scoliosis is present which is possibly skewing the results. So many questions.
There are a lot of medications available to slow down the loss of bone: Boniva, Actenol, Evista, Fosamax, etc. All medications have their pros and cons, but I'm not getting a warm fuzzy feeling about them. As far as I know (and my research just started very recently) there is one medication that actually promotes bone growth: Forteo. From what I've read and from patients I've talked to who are taking Forteo, this is the granddaddy of them all by providing very fast results which is especially beneficial to patients looking to have spinal surgery. You see, if a patient has osteopenia/porosis and undergoes spinal surgery, the hardware (rods and screws) that need to be implanted won't have solid, sturdy bone to anchor into. Curve correction won't be as good if the bone is soft in addition to potential future problems with the hardware coming loose.
I read that regardless of which type of bone medication a person takes, at some point, if they stop taking the med, their bone loss will return. In particular, Forteo is to be taken as a daily injection for 18 months to 2 years and no longer. Why? There are no long-term studies on the effects of taking Forteo beyond 2 years. Another question I have for the doctor: Can I take Forteo in conjunction with mega supplements so that when I cycle off Forteo, the supplements will maintain the new bone?
A blood test result from last year shows my vitamin D levels are low, healthy range is 20 - 100 and I'm at 33. Vitamin D is necessary for the proper absorption of calcium in the body. Could my density issue be something as simple as taking a boatload of vitamin D? We shall see.
Warmly,
Doreen
Monday, August 22, 2011
Welcome!
My goal for this blog is to share my journey of seeking spinal surgery to correct two scoliosis curves that have been on a progressive path to where my spine is now collapsing (I've literally lost 3 inches in height over the past year). I hope to educate, inspire and at times, entertain.
What's up with the name, Bionica? My daughter, 11 year old Lizzie, started calling me Bionica in July 2011 when I learned how my spine has worsened in recent years and the need for spinal surgery. I already have 16 titanium screws in my face as a result of reconstructive jaw surgery years ago; phase I: The Making of a Metal Momma started with this surgery in 1995. Have I set off metal detectors? Yes, while visiting the FBI building in Washington DC where they have super sensitive detectors. Phase II: Bionica will hopefully take place during 2011 where two titanium rods will be implanted along my spine along with supporting screws.
As a pre-teen, I was diagnosed with scoliosis and the doctor said, "... it's not that bad, don't worry about it." Well, I didn't worry about. After my son was born in 1987, I noticed frequent back pain but chose to ignore it. After my daughter was born in 2000, the back pain increased so I went to a doctor who said, "... you are too old for a back brace, just sit up straight." Gee, that helped a lot - NOT! A few years went by and in 2006 I went to a chiropractor for pain relief. My x-rays showed two curves at about 40 degrees each. Severe scoliosis is typically defined as curve(s) beyond 70 degrees. I was shocked and terrified looking at the snake of a spine that appeared on my x-rays. The chiro care was short lived because the treatments eventually aggravated my pain so I stopped going.
Fast forward to January 2011, my back pain significantly increased (constant burning pain in lumbar area) but I'm still try to grin-and-bear-it. I continue with my weight training as it has always provided pain relief in the past. After returning from a vacation in June 2011, I develop a stabbing pain in my lower right ribs which prompted me to call me new doctor. Weight training aggravates my back at this point and I stop training. My doctor just looked at me, not x-rays, and said it is obvious I have scoliosis and surgery will be needed, but he wants me to explore all options before considering spinal surgery. The stabbing pain I mentioned at the bottom of my right ribs is a result of my insides being compressed by the spinal curves and my ribs are pressing into my lungs and pelvis.
I met with an non-surgical orthopedic doctor who prescribes a few weeks of physical therapy and advises that she can do various injections in my spine to help with pain. What I've learned recently is that injections are really hit or miss; they work for some people while they can sometimes make the pain worse for others. My decision was to do what was necessary to stop the curve progression and alleviate some of the pain.
How do you stop an aggressive scoliosis curve(s)? Surgery. Physical therapy does nothing to slow down progression, it is merely for pain management. I'm not one to jump into surgery lightly, but I've had it in the back of my mind that surgery will be necessary at some point in time. That time is now because the quality of my life has greatly diminished over the past year. I'm tired of saying I'm unable to do things because of my back pain. The older a patient is, the more difficult the recovery from such a major surgery so I'd rather take care of it now than later.
During July 2011, I consulted with an Atlanta surgeon who had a lot of scoliosis surgery experience. Jeremy (hubby) and I felt comfortable with her, had heard great things from prior patients, and liked her credentials (fellowship at UCSF with primary focus on scoliosis). During my appointment with the surgeon I had three BIG surprises. Surprise #1: The surgeon recommended two surgeries - posterior (incision down back) and anterior (incision into abdomen). A full fusion was recommended from T6 - S1 (from top of thoracic to top of sacrum). I didn't know spinal surgery could be done from the front of a person, who knew? Surprise #2: My height was measured at 5'7" Wait a minute! "Are you sure?" I asked the nurse. She confirmed her measurement and yup, I'm no longer 5'10". Surprise #3: The surgeon said my thoracic (middle of spine) curve measured 72 degrees and my lumbar (lower spine) curve measured at 59 degrees. Are you kidding me?!
I went ahead and scheduled an August 30 surgery date for the posterior procedure, the anterior surgery would have come 3 months later. Do you notice the past tense in that statement? I immediately went into planning mode for the big day, making arrangements for Jeremy and Lizzie the week of the surgery, coordinating someone to take care of our pets, getting all the necessary medical tests done, etc.
On August 8, 2011 I had the carpet pulled out from underneath me with a single phone call and my world seemed to have crashed. The surgeon called to say there was a problem with my bone density test results, my bones were too soft, and that she would not do the surgeries. *sigh* My greatest fear had become reality, now what? The surgeon referred me to an endocrinologist who will prescribe meds to beef up my bones. How long will that take because my pain and curves are getting worse? My appointment with the endo is Aug 24 and I'm praying that God place the right medication in my path and that my body positively responds to it.
So is that it, did I just settle for this outcome? Absolutely not! Jeremy and I decided to seek a second opinion from one of America's top scoliosis surgeons, Dr. Lawrence Lenke in St. Louis. I've been able to connect with many of his patients through the National Scoliosis Foundation. Quite a few of his patients have said that it took over one year to get an initial appointment with him.
I called his office recently and was prepared to hear that the first opening would be in 2012. The nurse explained that Dr. Lenke only sees the "most severe of the severe... you qualify." I didn't quite know how to absorb that comment because if you were to look at me, you'd probably think I look "normal." I decided not to dwell on that too much and thanked God for putting me in a position to "qualify." The nurse asked, "Can you be here September 21?" I was speechless and shocked (still am a bit shocked) and asked if she was talking about next month? Would I actually meet Dr. Lenke himself? Are you joking? The nurse chuckled and confirmed that she was not joking. Yes, I'll be there! God is good.
So here I am today, cautiously optimistic about my Aug 24 appointment with the endo and my Sep 21 appointment with Dr. Lenke.
Warmly,
Doreen
What's up with the name, Bionica? My daughter, 11 year old Lizzie, started calling me Bionica in July 2011 when I learned how my spine has worsened in recent years and the need for spinal surgery. I already have 16 titanium screws in my face as a result of reconstructive jaw surgery years ago; phase I: The Making of a Metal Momma started with this surgery in 1995. Have I set off metal detectors? Yes, while visiting the FBI building in Washington DC where they have super sensitive detectors. Phase II: Bionica will hopefully take place during 2011 where two titanium rods will be implanted along my spine along with supporting screws.
As a pre-teen, I was diagnosed with scoliosis and the doctor said, "... it's not that bad, don't worry about it." Well, I didn't worry about. After my son was born in 1987, I noticed frequent back pain but chose to ignore it. After my daughter was born in 2000, the back pain increased so I went to a doctor who said, "... you are too old for a back brace, just sit up straight." Gee, that helped a lot - NOT! A few years went by and in 2006 I went to a chiropractor for pain relief. My x-rays showed two curves at about 40 degrees each. Severe scoliosis is typically defined as curve(s) beyond 70 degrees. I was shocked and terrified looking at the snake of a spine that appeared on my x-rays. The chiro care was short lived because the treatments eventually aggravated my pain so I stopped going.
Fast forward to January 2011, my back pain significantly increased (constant burning pain in lumbar area) but I'm still try to grin-and-bear-it. I continue with my weight training as it has always provided pain relief in the past. After returning from a vacation in June 2011, I develop a stabbing pain in my lower right ribs which prompted me to call me new doctor. Weight training aggravates my back at this point and I stop training. My doctor just looked at me, not x-rays, and said it is obvious I have scoliosis and surgery will be needed, but he wants me to explore all options before considering spinal surgery. The stabbing pain I mentioned at the bottom of my right ribs is a result of my insides being compressed by the spinal curves and my ribs are pressing into my lungs and pelvis.
I met with an non-surgical orthopedic doctor who prescribes a few weeks of physical therapy and advises that she can do various injections in my spine to help with pain. What I've learned recently is that injections are really hit or miss; they work for some people while they can sometimes make the pain worse for others. My decision was to do what was necessary to stop the curve progression and alleviate some of the pain.
How do you stop an aggressive scoliosis curve(s)? Surgery. Physical therapy does nothing to slow down progression, it is merely for pain management. I'm not one to jump into surgery lightly, but I've had it in the back of my mind that surgery will be necessary at some point in time. That time is now because the quality of my life has greatly diminished over the past year. I'm tired of saying I'm unable to do things because of my back pain. The older a patient is, the more difficult the recovery from such a major surgery so I'd rather take care of it now than later.
During July 2011, I consulted with an Atlanta surgeon who had a lot of scoliosis surgery experience. Jeremy (hubby) and I felt comfortable with her, had heard great things from prior patients, and liked her credentials (fellowship at UCSF with primary focus on scoliosis). During my appointment with the surgeon I had three BIG surprises. Surprise #1: The surgeon recommended two surgeries - posterior (incision down back) and anterior (incision into abdomen). A full fusion was recommended from T6 - S1 (from top of thoracic to top of sacrum). I didn't know spinal surgery could be done from the front of a person, who knew? Surprise #2: My height was measured at 5'7" Wait a minute! "Are you sure?" I asked the nurse. She confirmed her measurement and yup, I'm no longer 5'10". Surprise #3: The surgeon said my thoracic (middle of spine) curve measured 72 degrees and my lumbar (lower spine) curve measured at 59 degrees. Are you kidding me?!
I went ahead and scheduled an August 30 surgery date for the posterior procedure, the anterior surgery would have come 3 months later. Do you notice the past tense in that statement? I immediately went into planning mode for the big day, making arrangements for Jeremy and Lizzie the week of the surgery, coordinating someone to take care of our pets, getting all the necessary medical tests done, etc.
On August 8, 2011 I had the carpet pulled out from underneath me with a single phone call and my world seemed to have crashed. The surgeon called to say there was a problem with my bone density test results, my bones were too soft, and that she would not do the surgeries. *sigh* My greatest fear had become reality, now what? The surgeon referred me to an endocrinologist who will prescribe meds to beef up my bones. How long will that take because my pain and curves are getting worse? My appointment with the endo is Aug 24 and I'm praying that God place the right medication in my path and that my body positively responds to it.
So is that it, did I just settle for this outcome? Absolutely not! Jeremy and I decided to seek a second opinion from one of America's top scoliosis surgeons, Dr. Lawrence Lenke in St. Louis. I've been able to connect with many of his patients through the National Scoliosis Foundation. Quite a few of his patients have said that it took over one year to get an initial appointment with him.
I called his office recently and was prepared to hear that the first opening would be in 2012. The nurse explained that Dr. Lenke only sees the "most severe of the severe... you qualify." I didn't quite know how to absorb that comment because if you were to look at me, you'd probably think I look "normal." I decided not to dwell on that too much and thanked God for putting me in a position to "qualify." The nurse asked, "Can you be here September 21?" I was speechless and shocked (still am a bit shocked) and asked if she was talking about next month? Would I actually meet Dr. Lenke himself? Are you joking? The nurse chuckled and confirmed that she was not joking. Yes, I'll be there! God is good.
So here I am today, cautiously optimistic about my Aug 24 appointment with the endo and my Sep 21 appointment with Dr. Lenke.
Warmly,
Doreen
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