Duke Transplant Evaluation Decision - Friday August 13th
All week I've been taking stock of last weeks evaluation, discussions, etc. If nothing else it's a way to pass the time until I get "the call". Now this call is not "THE CALL" (the call that a new set of lungs is waiting for me) but it is still an important call none the less. This call will reaffirm or change my thoughts on where I'm at in the transplant process. Currently I'm thinking that I'm getting closer but probably have at least a year or maybe two until it's time to get listed. My health is at the point where this could change suddenly given another big illness or two. My local doctors think about the same as I do. So, will the Duke docs make the same conclusion???
Well the call came at the most interesting of times. After being out of town in NC for a week and returning to finish off the deck we/Randy has been building, we hosted 15 or so at our house for two days of Phish concerts. Honestly sometimes I wonder when I'll have time to get transplanted. Anyway, the call came on Friday just as we were loading up the bus to go to the show. It was the last possible moment I was home before leaving for the night. But it was also the best possible moment for it to come. It relieved that sense of waiting hanging over my head all week and let me enjoy the rest of the night.
Lauren the pre-transplant coordinator made the call. Just as I expected they don't think I'm ready to be listed yet. The gameplan is to do the following:
1) Have an endoscopy & colonoscopy here locally to further investigate my GI issues.
2) Start on a drug called Reglan to help my esophogus heal.
3) Come back in 3 months for follow up and additional tests at Duke.
Whew what a relief! As usual things are what they are. In this case they are also exactly what I need :) Now back to life.
Showing posts with label evaluation. Show all posts
Showing posts with label evaluation. Show all posts
Wednesday, August 18, 2010
Duke Transplant Evaluation Day 4
Note to readers: these transplant evaluation recaps are delayed because I was just to darn exhausted to blog during that week. Enjoy.
Day 4 - Thursday August 5th
Today started off bright & early getting to the clinic at 7:30am. I'm usually not even awake by then so being ready that early was a real challenge. Thankfully most of my tests today were Radiology and fairly easy. The first was a Chest CT. No biggie there. I just had to lie down and breath when they told me. Of course the holding the breath part can be hard but not too bad today.
Then came the VQ Scan. This test starts by having you inhale a radioactive gas. The purpose is to see how well your lungs exchange gas. The second part measured the blood flow in the lungs by injecting a radioactive dye. Again not too difficult.
After inhaling & being injected, next I got to swallow radioactive barium. This test measures how well my intestinal tract is working. It's not particularly difficult but the barium sure tastes nasty. Imagine drinking a cupful of slightly liquified chalkdust one swallow at a time...yuk! The upside was being able to see the screen that showed the stuff going down my esophogus & into my stomach. Pretty neat.
The last test was just an ultrasound of my carotid artery. Almost fell asleep in this one.
The day ended with an appointment with Dr. Scott Palmer. Dr. Palmer used to be the director of the transplant program but now is the scientific director. I was really excited to get him as I'm always interested in what research is out there. Our discussion began with my recent medical history. After that he asked what I thought about the timing of me being listed. I told him listing in the next month would seem too soon but that I feel like I'm on the edge and it wouldn't take much to push me over. He concurred.
Dr. Palmer said most of my results would make me an excellent candidate when the time came. However, the manometry study and barium swallow indicated that I have esophogeal motility issues & acid reflux. So the next steps are to try and get that under control via some new meds & additional testing. He wanted to see me again in a few months and not list me yet. Of course this will all be finalized for sure once the committee meets on Tuesday. I really enjoyed meeting with Dr. Palmer. He is very bright and had some amazing insight into the research they are doing at Duke. This meeting really reaffirmed my decision to come here.
Day 4 - Thursday August 5th
Today started off bright & early getting to the clinic at 7:30am. I'm usually not even awake by then so being ready that early was a real challenge. Thankfully most of my tests today were Radiology and fairly easy. The first was a Chest CT. No biggie there. I just had to lie down and breath when they told me. Of course the holding the breath part can be hard but not too bad today.
Then came the VQ Scan. This test starts by having you inhale a radioactive gas. The purpose is to see how well your lungs exchange gas. The second part measured the blood flow in the lungs by injecting a radioactive dye. Again not too difficult.
After inhaling & being injected, next I got to swallow radioactive barium. This test measures how well my intestinal tract is working. It's not particularly difficult but the barium sure tastes nasty. Imagine drinking a cupful of slightly liquified chalkdust one swallow at a time...yuk! The upside was being able to see the screen that showed the stuff going down my esophogus & into my stomach. Pretty neat.
The last test was just an ultrasound of my carotid artery. Almost fell asleep in this one.
The day ended with an appointment with Dr. Scott Palmer. Dr. Palmer used to be the director of the transplant program but now is the scientific director. I was really excited to get him as I'm always interested in what research is out there. Our discussion began with my recent medical history. After that he asked what I thought about the timing of me being listed. I told him listing in the next month would seem too soon but that I feel like I'm on the edge and it wouldn't take much to push me over. He concurred.
Dr. Palmer said most of my results would make me an excellent candidate when the time came. However, the manometry study and barium swallow indicated that I have esophogeal motility issues & acid reflux. So the next steps are to try and get that under control via some new meds & additional testing. He wanted to see me again in a few months and not list me yet. Of course this will all be finalized for sure once the committee meets on Tuesday. I really enjoyed meeting with Dr. Palmer. He is very bright and had some amazing insight into the research they are doing at Duke. This meeting really reaffirmed my decision to come here.
Sunday, August 15, 2010
Duke Transplant Evaluation Day 3
Note to readers: these transplant evaluation recaps are delayed at least a week because I was just to darn exhausted to blog during that week. Enjoy
Day 3 - Wednesday August 4th
Sleeping last night was not the easiest. I had the tube down my nose and was cuddled up to my pH meter. The meter was a poor substitute for my usual snuggler Rocky (one of my Boston Terriers). Unfortunately I still had to lug that darn thing to my pulmonary rehab appointment too.
Duke's Center for Living is where they have the pulmonary rehab. It is a huge indoor facility with a pool, tons of equipment and an indoor track. When I got there they had aerobics and spinning class both going at the same time. Yes it's that big :) I met with the PT Danielle. She showed me the facilities and briefly discussed their program. She also did a physical assessment including my feet. She found I had low arches and gave me a list of workout shoes that would work for my foot type. Very cool. I've had that done at a runner's shoe store but did not expect that level of depth from my rehab assessment. The last thing to do was my six minute walk test. During this test you are to walk as far as you can in six minutes. You can use as much oxygen as you need but I'm still lucky enough to do it just on room air. It was a great day for me. My results were just over 1500 feet. Duke requires that you walk at least 1000 feet to be considered for listing. Yea another test passed!!! Not only that it was higher than my 1200 feet I walked after graduating from pulmonary rehab at home here in Indy.
Then we left to go back to the clinic and had my nose tube pulled. What a relief :) Our financial coordinator appointment was next. Julia spelled out the in and outs of what would and would not be covered by my insurance. Thankfully I have terrific insurance through work and my coverage amounts are good. There will be out of pocket costs for my med co-pay and travel & lodging once I exceed my cap. But I'm much luckier than most. It was not a total slam dunk though. Julia brought up many provocative questions about my LTD coverage and also about how my private insurance will interact with Medicare once I'm eligible (in about a year). She is such a great resource and I'm glad to have her on my side.
The next stop was the transplant psychologist. Jenny Wang is really great. She has a warm personality and is very easy to talk to. Our visit started with Jenny, Randy, my mom Robin and me all in the room. Then Jenny met with just me and then with Randy & my mom. Overall things went very smoothly. She suggested I start seeing my local therapist again so I have another emotional outlet as things get rougher. When you deal with a chronic disease sometimes it's hard to discuss all of your emotions with those you are close too. Randy & I share everything but I hate burdening him with everything when he is under a lot of strain too. So my therapist Lin is a great extra help in this area. Jenny seemed to thing everything else looked AOK so another test passed!!!
Last but not least was the vampire aka the lab. For a transplant workup they run a huge number of blood tests. The lab tech drew a total of 23 vials. She started on one arm and when that clotted off had to use the other. It really wasn't that bad but did make me a little lightheaded.
After leaving the clinic we went to see a few more apartment complexes. It's a little weird doing it since we don't know exactly when we will move down etc. But at least we get to see the possibilities. Right now we're debating furnished turnkey vs unfinished and bringing some of our furniture or renting some ourselves. It seems like the charge for it to be turnkey is a little high. Randy has done a lot of research which is great. But I'm thinking easy will be the way to go when it's time to move down. I'm guessing I'll be sick enough that low stress will be the best.
The day ended with another wonderful dinner. Almost my entire NC family drove down to have dinner with us. We ate at Four Square in Durham. The food was very fancy and a really nice atmosphere. But Nana's still has them beat ;) Had a great time hanging out with all my aunts, uncles and my cousin Meagan. It's weird but lately it feels like they look at me in a slightly different way. It's not bad but there's something that makes me feel how much they care that I am able to get this transplant and that I must be getting closer to needing it. I'm SO fortunate to have such an amazing family for sure. Having them close will make this whole thing much easier.
Good night,
Steph
Day 3 - Wednesday August 4th
Sleeping last night was not the easiest. I had the tube down my nose and was cuddled up to my pH meter. The meter was a poor substitute for my usual snuggler Rocky (one of my Boston Terriers). Unfortunately I still had to lug that darn thing to my pulmonary rehab appointment too.
Duke's Center for Living is where they have the pulmonary rehab. It is a huge indoor facility with a pool, tons of equipment and an indoor track. When I got there they had aerobics and spinning class both going at the same time. Yes it's that big :) I met with the PT Danielle. She showed me the facilities and briefly discussed their program. She also did a physical assessment including my feet. She found I had low arches and gave me a list of workout shoes that would work for my foot type. Very cool. I've had that done at a runner's shoe store but did not expect that level of depth from my rehab assessment. The last thing to do was my six minute walk test. During this test you are to walk as far as you can in six minutes. You can use as much oxygen as you need but I'm still lucky enough to do it just on room air. It was a great day for me. My results were just over 1500 feet. Duke requires that you walk at least 1000 feet to be considered for listing. Yea another test passed!!! Not only that it was higher than my 1200 feet I walked after graduating from pulmonary rehab at home here in Indy.
Then we left to go back to the clinic and had my nose tube pulled. What a relief :) Our financial coordinator appointment was next. Julia spelled out the in and outs of what would and would not be covered by my insurance. Thankfully I have terrific insurance through work and my coverage amounts are good. There will be out of pocket costs for my med co-pay and travel & lodging once I exceed my cap. But I'm much luckier than most. It was not a total slam dunk though. Julia brought up many provocative questions about my LTD coverage and also about how my private insurance will interact with Medicare once I'm eligible (in about a year). She is such a great resource and I'm glad to have her on my side.
The next stop was the transplant psychologist. Jenny Wang is really great. She has a warm personality and is very easy to talk to. Our visit started with Jenny, Randy, my mom Robin and me all in the room. Then Jenny met with just me and then with Randy & my mom. Overall things went very smoothly. She suggested I start seeing my local therapist again so I have another emotional outlet as things get rougher. When you deal with a chronic disease sometimes it's hard to discuss all of your emotions with those you are close too. Randy & I share everything but I hate burdening him with everything when he is under a lot of strain too. So my therapist Lin is a great extra help in this area. Jenny seemed to thing everything else looked AOK so another test passed!!!
Last but not least was the vampire aka the lab. For a transplant workup they run a huge number of blood tests. The lab tech drew a total of 23 vials. She started on one arm and when that clotted off had to use the other. It really wasn't that bad but did make me a little lightheaded.
After leaving the clinic we went to see a few more apartment complexes. It's a little weird doing it since we don't know exactly when we will move down etc. But at least we get to see the possibilities. Right now we're debating furnished turnkey vs unfinished and bringing some of our furniture or renting some ourselves. It seems like the charge for it to be turnkey is a little high. Randy has done a lot of research which is great. But I'm thinking easy will be the way to go when it's time to move down. I'm guessing I'll be sick enough that low stress will be the best.
The day ended with another wonderful dinner. Almost my entire NC family drove down to have dinner with us. We ate at Four Square in Durham. The food was very fancy and a really nice atmosphere. But Nana's still has them beat ;) Had a great time hanging out with all my aunts, uncles and my cousin Meagan. It's weird but lately it feels like they look at me in a slightly different way. It's not bad but there's something that makes me feel how much they care that I am able to get this transplant and that I must be getting closer to needing it. I'm SO fortunate to have such an amazing family for sure. Having them close will make this whole thing much easier.
Good night,
Steph
Thursday, August 12, 2010
Duke Transplant Evaluation Day 2
Note to readers: these transplant evaluation recaps are delayed a week because I was just to darn exhausted to blog during that week. Enjoy.
Day 2 - Tuesday August 3rd
Day 2 started out fairly easy with a full pulmonary function study and arterial blood gas draw. Keep in mind that these are easy relative to some of the other tests. My FEV1 result was 25% to which the technician said "oh that's good they will like that number". Looking perplexed I asked what good meant. She said that number is in the range they want you in to be listed. Once again I'm hit full force with the reality that this transplant thing might be getting closer than I anticipated. The sense of the inevitable is mixed with a blend of sadness, relief, and excitement. When the time comes I'll be sad in admitting that my lungs have finally failed and there is nothing more I can do to keep them going. But on the flipside I'll be relieved and excited to have some other option that will allow me to live a life full of breath.
The ABG blood draw hurt a bit but otherwise was uneventful. Only a small bit of torture compared to my next test.
Then I went to have a pH/Manometry test. For the Manometry the techs numbed my right nostril and the back of my throat. Then they snaked a tube the width of a straw up my nose and down my throat. This part was not painful but made me gag like crazy. Of all the procedures I've ever had this was in the top 5 for most difficult. And no sedation :( While the tube is down you are not to swallow for 30 seconds (not easy after you've been gagging right before this and have a mouth full of saliva). Then they have you take a series of swallows of water. The purpose of all this is to measure how well the muscles in your esophogus work. Then they removed the large tube and snaked another much smaller tube down. This one is about the width of a coffee stirrer and will stay in for 24 hours. It's attached to a monitor that will measure the pH levels in the portion of my esophogus just above my stomach. During the test I have to keep a log of when I start and stop eating or drinking and also every time I cough. Recording every cough will be a challenge since it's so second nature to me.
Next we met with the transplant surgeons. I'm really not that scared about the actual surgical part of transplant. The surgeons seemed to think this meant I thought transplant was not big deal and let's just go for it. I'm highly aware of how difficult and uncertain transplant can be and want to keep my lungs as possible. But my biggest concerns are what happens after the surgery not in the OR. Drug side effects, rejection, other related issues like diabetes, and the poor long term survival rates are WAY more daunting in my opinion. But maybe it's just because I've had so many operations, have witness a neurosurgery, have a mother as a nurse etc. that make me a bit desensitized.
The final meeting of the day was my most highly anticipated...infectious disease. The doctor assigned to me changed at the last minute and we got Dr. Cameron Wolfe instead. Dr. Wolfe is a wonderfully funny & cute Aussie doc. Thankfully he seems highly competent as well. We got to share stories about our six week trip down under back in 2002 and really felt at ease with him. The best part of the appointment was finding out that my resistant pseudomonas would be something they could handle post transplant. Although I'm still a bit concerned that really eased my fears quite a bit.
Another day filled with some good, some bad, and some in between. This is really a mentally and physically exhausting process. And that nose tube thing is a real pain!!!
Day 2 - Tuesday August 3rd
Day 2 started out fairly easy with a full pulmonary function study and arterial blood gas draw. Keep in mind that these are easy relative to some of the other tests. My FEV1 result was 25% to which the technician said "oh that's good they will like that number". Looking perplexed I asked what good meant. She said that number is in the range they want you in to be listed. Once again I'm hit full force with the reality that this transplant thing might be getting closer than I anticipated. The sense of the inevitable is mixed with a blend of sadness, relief, and excitement. When the time comes I'll be sad in admitting that my lungs have finally failed and there is nothing more I can do to keep them going. But on the flipside I'll be relieved and excited to have some other option that will allow me to live a life full of breath.
The ABG blood draw hurt a bit but otherwise was uneventful. Only a small bit of torture compared to my next test.
Then I went to have a pH/Manometry test. For the Manometry the techs numbed my right nostril and the back of my throat. Then they snaked a tube the width of a straw up my nose and down my throat. This part was not painful but made me gag like crazy. Of all the procedures I've ever had this was in the top 5 for most difficult. And no sedation :( While the tube is down you are not to swallow for 30 seconds (not easy after you've been gagging right before this and have a mouth full of saliva). Then they have you take a series of swallows of water. The purpose of all this is to measure how well the muscles in your esophogus work. Then they removed the large tube and snaked another much smaller tube down. This one is about the width of a coffee stirrer and will stay in for 24 hours. It's attached to a monitor that will measure the pH levels in the portion of my esophogus just above my stomach. During the test I have to keep a log of when I start and stop eating or drinking and also every time I cough. Recording every cough will be a challenge since it's so second nature to me.
Next we met with the transplant surgeons. I'm really not that scared about the actual surgical part of transplant. The surgeons seemed to think this meant I thought transplant was not big deal and let's just go for it. I'm highly aware of how difficult and uncertain transplant can be and want to keep my lungs as possible. But my biggest concerns are what happens after the surgery not in the OR. Drug side effects, rejection, other related issues like diabetes, and the poor long term survival rates are WAY more daunting in my opinion. But maybe it's just because I've had so many operations, have witness a neurosurgery, have a mother as a nurse etc. that make me a bit desensitized.
The final meeting of the day was my most highly anticipated...infectious disease. The doctor assigned to me changed at the last minute and we got Dr. Cameron Wolfe instead. Dr. Wolfe is a wonderfully funny & cute Aussie doc. Thankfully he seems highly competent as well. We got to share stories about our six week trip down under back in 2002 and really felt at ease with him. The best part of the appointment was finding out that my resistant pseudomonas would be something they could handle post transplant. Although I'm still a bit concerned that really eased my fears quite a bit.
Another day filled with some good, some bad, and some in between. This is really a mentally and physically exhausting process. And that nose tube thing is a real pain!!!
Tuesday, August 10, 2010
Duke Transplant Evaluation Day 1
Note to readers: these transplant evaluation recaps are delayed a week because I was just to darn exhausted to blog during that week. Enjoy.
Day 1 - Monday August 2nd
Hey All,
Tried to think of a catchy title for this one but WAY too much going on yesterday for me to distill it into one catchy phrase.
We arrived in Duke Sunday around 6pm. Thankfully the drive was much shorter than the 12 hours I had anticipated. No laws were "excessively" broken getting here either. We're staying at the Washington Duke Inn right at the edge of campus and very close to the hospital. It's a very beautiful place and very fancy. Thankfully I'm getting a great rate through a Medstay program and can therefore afford to be spoiled. It's really the perfect place for short term stays here. We can talk long term options later.
The day started off with Transplant Orientation lead by pre-transplant coordinator Lauren Rich. Lauren and I have spoken by phone and via email and it was so cool to put a face with the name. Speaking of faces both Randy & I were thinking how much she reminded us of someone. We both separately concluded that she looked and acted a LOT like our friend Liz. We met Liz when she worked out at the CF Foundation. Liz is beautiful, cute, radiates energy, is enthusiastic, intelligent and has great compassion (and no she didn't pay us to say this). Lauren is much the same. You can tell she has a great depth of knowledge and a passion for what she does and those she is helping.
Two big shockers came out of the event. Lauren mentioned that some of the attendees were only there for a few days of testing and others were there for a full week. The two day evaluations were for those further away from the transplant timeframe while the week long evaluations were for those a few months away from getting listed. I’m thinking my transplant wouldn’t be for another year or two. But my evaluation is for a week??? Does that mean that I’m closer than I think? The other shocker is Duke’s no alcohol policy. Once accepted by Duke I’ll have to give up my wine with dinner and the occasional margarita. The wine will be the hardest. Eating a steak without a nice red just seems wrong. But I guess if the choice is new lungs or wine the choice is a no brainer!
After orientation we met with the social worker. She got to know us, gave us info on long term accommodations, and told us a story about a guy giving up his 3000 bottle wine collection during his transplant journey,. I guess if he can do it so can I.
Then we met with Dr. Blazing the cardiologist. He did a physical exam and told me that the pressures in my arteries seemed to be only slight. He was able to tell this by looking at my eyes. Very cool. He also thought my right heart might be working a little hard but nothing severe yet. When you have lungs with lots of blockages it makes the right heart work harder to pump all the blood through them. We briefly discussed the cardiac cath test scheduled for Friday. Our only final question was what restaurants he suggested. Honestly I think we spent more time talking about that than my heart. He was so much fun!
The last appointment was with Dietary. In the past I’ve not had much luck with dieticians. Often I know more about what works for me to put on the pounds than they do. Fortunately, Wendy was an amazing dietician. She really understood the ins & outs of CF. We discussed post transplant diabetes and possible gastroparesis. Her insight made me feel more at ease with those issues. Once again another fun & bright “Dukie”.
After a long and somewhat overwhelming first day we treated ourselves to dinner at Nana’s (think euro cuisine meets the south). Nothing like chicken liver pate to end a long day…YUM!!!
Day 1 - Monday August 2nd
Hey All,
Tried to think of a catchy title for this one but WAY too much going on yesterday for me to distill it into one catchy phrase.
We arrived in Duke Sunday around 6pm. Thankfully the drive was much shorter than the 12 hours I had anticipated. No laws were "excessively" broken getting here either. We're staying at the Washington Duke Inn right at the edge of campus and very close to the hospital. It's a very beautiful place and very fancy. Thankfully I'm getting a great rate through a Medstay program and can therefore afford to be spoiled. It's really the perfect place for short term stays here. We can talk long term options later.
The day started off with Transplant Orientation lead by pre-transplant coordinator Lauren Rich. Lauren and I have spoken by phone and via email and it was so cool to put a face with the name. Speaking of faces both Randy & I were thinking how much she reminded us of someone. We both separately concluded that she looked and acted a LOT like our friend Liz. We met Liz when she worked out at the CF Foundation. Liz is beautiful, cute, radiates energy, is enthusiastic, intelligent and has great compassion (and no she didn't pay us to say this). Lauren is much the same. You can tell she has a great depth of knowledge and a passion for what she does and those she is helping.
Two big shockers came out of the event. Lauren mentioned that some of the attendees were only there for a few days of testing and others were there for a full week. The two day evaluations were for those further away from the transplant timeframe while the week long evaluations were for those a few months away from getting listed. I’m thinking my transplant wouldn’t be for another year or two. But my evaluation is for a week??? Does that mean that I’m closer than I think? The other shocker is Duke’s no alcohol policy. Once accepted by Duke I’ll have to give up my wine with dinner and the occasional margarita. The wine will be the hardest. Eating a steak without a nice red just seems wrong. But I guess if the choice is new lungs or wine the choice is a no brainer!
After orientation we met with the social worker. She got to know us, gave us info on long term accommodations, and told us a story about a guy giving up his 3000 bottle wine collection during his transplant journey,. I guess if he can do it so can I.
Then we met with Dr. Blazing the cardiologist. He did a physical exam and told me that the pressures in my arteries seemed to be only slight. He was able to tell this by looking at my eyes. Very cool. He also thought my right heart might be working a little hard but nothing severe yet. When you have lungs with lots of blockages it makes the right heart work harder to pump all the blood through them. We briefly discussed the cardiac cath test scheduled for Friday. Our only final question was what restaurants he suggested. Honestly I think we spent more time talking about that than my heart. He was so much fun!
The last appointment was with Dietary. In the past I’ve not had much luck with dieticians. Often I know more about what works for me to put on the pounds than they do. Fortunately, Wendy was an amazing dietician. She really understood the ins & outs of CF. We discussed post transplant diabetes and possible gastroparesis. Her insight made me feel more at ease with those issues. Once again another fun & bright “Dukie”.
After a long and somewhat overwhelming first day we treated ourselves to dinner at Nana’s (think euro cuisine meets the south). Nothing like chicken liver pate to end a long day…YUM!!!
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