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
Sunday, August 15, 2010
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!!!
Sunday, August 1, 2010
Off to Duke
Hey All (or maybe it should be Y'all since I'm heading south),
Just a quick update before we hit the road. Leaving today for my lung transplant evaluation at Duke Medical Center in NC. Just a short 12 hour drive and we will be there ;) Hoping to be on the road by 7AM. My first appointment Monday is at 8. I'm NOT an early riser nor would I consider myself to be exactly cheery for the first hour or so I'm awake. Ask my hubby Randy; he will confirm that for sure. So the gameplan is to get to Durham by early evening to have time to get settled in and organized to get up early the next day. No rest for the weary...or is it the wicked?
Really excited for my appointments Monday especially with the infectious disease doctor. My biggest concern right now is the drug resistance of my pseudomonas and how that will impact a potential transplant and the ability/timing of getting listed. Once this appointment is done the rest of the week should be gravy. Well maybe having a tube hanging out of my nose won't be but I can be optimistic right? More on the tube thing later this week.
I'm hoping to update the blog every day this week so you can get an insider's view on the evaluation process. Blog at ya tomorrow and thanks for listening!
Peace,
Steph
Just a quick update before we hit the road. Leaving today for my lung transplant evaluation at Duke Medical Center in NC. Just a short 12 hour drive and we will be there ;) Hoping to be on the road by 7AM. My first appointment Monday is at 8. I'm NOT an early riser nor would I consider myself to be exactly cheery for the first hour or so I'm awake. Ask my hubby Randy; he will confirm that for sure. So the gameplan is to get to Durham by early evening to have time to get settled in and organized to get up early the next day. No rest for the weary...or is it the wicked?
Really excited for my appointments Monday especially with the infectious disease doctor. My biggest concern right now is the drug resistance of my pseudomonas and how that will impact a potential transplant and the ability/timing of getting listed. Once this appointment is done the rest of the week should be gravy. Well maybe having a tube hanging out of my nose won't be but I can be optimistic right? More on the tube thing later this week.
I'm hoping to update the blog every day this week so you can get an insider's view on the evaluation process. Blog at ya tomorrow and thanks for listening!
Peace,
Steph
Thursday, July 22, 2010
The waiting is the hardest part
So here I sit waiting for my treatments to be over. As I sit I'm thinking of how much longer I'll have to wait until the heat & humidity break and I'll feel better. Then I wonder if I'm really just waiting for the perverbial shoe to drop and face another exacerbation. Lying beneath the surface of all this I'm still waiting on my big trip to NC to get evaluated at Duke for lung transplant. And last but certainly not least I'm waiting for new lungs. This is the hardest kind of waiting of all.
Why is this waiting hard? Well the eternal optimist in me (although sometime's her voice has been a bit quiet lately) is hoping these lungs make it AT LEAST another 2 years or so. Really I do think this is possible. But is another five or more possible? Lately my body is giving me signals no. Not to be a Debbie downer or anything but my body is just getting more tired of fighting. My energy level is down quite a bit from my late 30s. Of course maybe it's just that hitting 40 means things start falling apart a bit anyhow. But way down deep I'm feeling that my lungs are like an old junker car that you love and keep gimping along but really needs replaced with a new model.
Of course the yogini in me says hey enjoy the wait and live in the present moment. That voice needs to yell at me a little louder too by the way. But sometimes even though I know that's the truth it's hard to listen. And to be honest sometimes you need to feel a little bummed about the realities of what's going on, admit it, embrace it, and then move on. I guess writing this blog today is my way to do that. It's OK for me to be tired, OK to feel frustrated by being so tired, OK to need to vent, and eventually be OK with accepting all of the above and move forward with the rest of life.
For now I'll wait for that acceptance phase and hope as always for the best. Thanks for listening.
Why is this waiting hard? Well the eternal optimist in me (although sometime's her voice has been a bit quiet lately) is hoping these lungs make it AT LEAST another 2 years or so. Really I do think this is possible. But is another five or more possible? Lately my body is giving me signals no. Not to be a Debbie downer or anything but my body is just getting more tired of fighting. My energy level is down quite a bit from my late 30s. Of course maybe it's just that hitting 40 means things start falling apart a bit anyhow. But way down deep I'm feeling that my lungs are like an old junker car that you love and keep gimping along but really needs replaced with a new model.
Of course the yogini in me says hey enjoy the wait and live in the present moment. That voice needs to yell at me a little louder too by the way. But sometimes even though I know that's the truth it's hard to listen. And to be honest sometimes you need to feel a little bummed about the realities of what's going on, admit it, embrace it, and then move on. I guess writing this blog today is my way to do that. It's OK for me to be tired, OK to feel frustrated by being so tired, OK to need to vent, and eventually be OK with accepting all of the above and move forward with the rest of life.
For now I'll wait for that acceptance phase and hope as always for the best. Thanks for listening.
Sunday, July 18, 2010
Such a good time I forgot I had CF
Well kids it's been a fun weekend for sure. Some of our dear friends were in town for the Umphree's Mcgee show downtown in Indy. At first we thought only 2 were coming but it was even more fun having more last minute. Linda, Mitch, Jodie, Steve, Dave, Will, and Robbie are friends we met in various ways through Jamcruise (see Soul Vacation post for details on that one). Having them in town made me realize two important things. 1) How lucky we are to have such cool, fun, and caring friends and 2) that I need to not let my daily struggles make me withdraw from such wonderful people.
To be honest lately it seems that I'm getting to be too much of a homebody. But this weekend was different. Last night was the perfect night out. The concert had great lighting but even more exciting was the lightning in the sky. Seems like the lighting tech had control of it somehow and coordinated it with the music. The wind brought awesome breezes and AMAZINGLY it only sprinkled once for a short time. Basicially the best weather ever for a show. Saw a group of our local friends at the show and later at the American Legion for an afterparty. Again, definately need to get our more. Had so much fun and energy that I really felt like my old self. AND IT WAS FUN!!!
Thanks again to all of my friends and family for understanding those times when I get detached for various reasons. Today my body had CF but my mind and spirit did not :)
To be honest lately it seems that I'm getting to be too much of a homebody. But this weekend was different. Last night was the perfect night out. The concert had great lighting but even more exciting was the lightning in the sky. Seems like the lighting tech had control of it somehow and coordinated it with the music. The wind brought awesome breezes and AMAZINGLY it only sprinkled once for a short time. Basicially the best weather ever for a show. Saw a group of our local friends at the show and later at the American Legion for an afterparty. Again, definately need to get our more. Had so much fun and energy that I really felt like my old self. AND IT WAS FUN!!!
Thanks again to all of my friends and family for understanding those times when I get detached for various reasons. Today my body had CF but my mind and spirit did not :)
Thursday, July 1, 2010
In my mind I'm gone to Carolina
First post in a long time. Lots to cover for sure. I've been neglect in posting because of said "lots to cover". Probably because it is such a daunting task. But then I got some big signals that it's time to blog again. First, my wonderful cousin Julie keeps asking about me. Thanks Julie :) Then, a CF friend Piper had a transplant (YEA!!!). I've been following her blog for some time. I realized how much her blog (and others) helped me stay positive about my disease. And then it hit me...maybe my blog is or could be the same for others. So I'm back.
So where have I been lately? First, I've been in yoga teacher training since last March. I took the training just to deepen my practice but may end up being a teacher at some point anyhow. The experience and my classmates & teachers are the most amazing people. Namaste to them all. Of course we have traveled quite a bit too. The horse races in Lexington in April. Camping in Arkansas in June. Etc etc. In fact today we are off for North Carolina to celebrate the 4th of July with my family. Its an annual tradition complete with themed dinners & drinks (Mexican, Carribean, All American), lots of talking and not a lot of sleep. Hence in my mind I'm gone to Carolina (in the words of one of my favorite singers James Taylor).
But there's another reason my mind is gone to Carolina. Lately I've been doing OK but my infections are getting more frequent and more severe. Within the last 12 months I've been hospitalized 3 times and only off antibiotics about 30% of the time. Plus I have a strain of Pseudomonas Aeriginosa that is getting very resistant to antibiotics. Pseudomonas is the bug I grow in my lungs that damages them the most. At the end of April I had my annual check-in with Dr. Reynolds of the Clarian transplant team here in Indy. In light of my recent illnesses and low lung capacity, we decided it is time to proceed with evaluating me for transplant. I'm not sick enough to get listed yet but who knows when another serious infection could put me over the edge.
The evaluation process is a week of medical tests, meetings, etc to evaluate how you would do physically and mentally during the transplant processs. They want to insure you don't have cancer or some other illness that makes you ineligible. It's also important that you and your support network will be able to handle the mental demands that will come. So Clarian started setting up my testing and clearing things with my insurance. Then I got the news; Clarian is currently out of network for my insurance company. YIKES!!! Could it be possible that my center which has been following me for 17 years is really out of network???? We double triple checked it and yes for sure 100% it's true. That may change at some point in the future but right now the only transplant center in Indy is not a possibility for me. It's a total bummer because I really love Dr. Reynolds and think he would be great to have as my doc post transplant.
So the next step was to find out where I could go. In the midwest Cleveland Clinic and Barnes-Jewish St. Louis are the best options. However, I have lots of family in North Carolina and Duke is in network. After lots of thinking, consulting my local docs, and asking questions of the centers via phone, I decided on Duke. It is one of the best centers for lung transplant in the country and has the best pulmonary rehab program. In addition they specialize in transplanting CF people with drug resistant bugs like my Pseudomonas. Seems like a great fit. The distance will be a challenge but thankfully my insurance does cover travel and lodging up to a certain amount. We will have to relocate for about a month pre-transplant and three months post. Since Randy is self employed and works from a laptop we should be able to manage it fairly well.
My evaluation at Duke will be the first week in August. So my mind has been going to Carolina a lot lately. I'm very excited to meet the team down there. However, I'm also a bit worried that they might do all my tests and either a) find something that would disqualify me, or b) say not only are you a good candidate but due to your Pseudomonas progression we think you should be listed now. Granted I don't think either a or b will happen and I'm guessing they will say c) you are a great candidate and we will accept you in our program and will follow you until it's time to put you on the active transplant wait list.
For all of you that are freaking out about this whole transplant thing, know that I've been down this road before. Back in 1992 I was evaluated and put on the active list here locally. At the time I was in right heart failure and on oxygen 24/7. Exercise and a new drug Pulmozyme saved me and transplant was put on hold. Of course it was a major freak out back then to think about transplant at 23. It's easier now but still a lot to wrap my head around. I'm still shooting for growing old with Randy of course and don't want to leave him anytime soon. But the days are getting harder and my energy level is getting lower. Back in 92 my doctor Mason Goodman talked about quality vs. quantity of life. Of course back then I still wanted to hit 35 because that was "old". Now I'm thinking more and more about quality. I've had an amazing and adventurous life up until now and want to have the lungs to forge ahead even if it's only til 50 or maybe even 60. There are still lots of dreams to accomplish and I'm at a point now where it's time to give back and I need more energy to do so.
I'm fully aware of how really lucky I've been and grateful for it every day. CF has given my a wonderful perspective on life. Also, for having CF I'm one of the lucky ones. A recent article (http://www.ctpost.com/news/article/CF-patients-live-longer-some-diagnosed-as-adults-531674.php) had another shocking stat. Only 5% of people with CF survive past the age of 40. When you consider that includes people that have been transplanted it's even more amazing. So without transplant I'm already at 41...yes I'm definitely lucky :)
I guess that's it for now. Thanks for indulging me and listening. Now I'm off to Carolina both in my mind and my body.
Peace, love and happy 4th.
Steph
So where have I been lately? First, I've been in yoga teacher training since last March. I took the training just to deepen my practice but may end up being a teacher at some point anyhow. The experience and my classmates & teachers are the most amazing people. Namaste to them all. Of course we have traveled quite a bit too. The horse races in Lexington in April. Camping in Arkansas in June. Etc etc. In fact today we are off for North Carolina to celebrate the 4th of July with my family. Its an annual tradition complete with themed dinners & drinks (Mexican, Carribean, All American), lots of talking and not a lot of sleep. Hence in my mind I'm gone to Carolina (in the words of one of my favorite singers James Taylor).
But there's another reason my mind is gone to Carolina. Lately I've been doing OK but my infections are getting more frequent and more severe. Within the last 12 months I've been hospitalized 3 times and only off antibiotics about 30% of the time. Plus I have a strain of Pseudomonas Aeriginosa that is getting very resistant to antibiotics. Pseudomonas is the bug I grow in my lungs that damages them the most. At the end of April I had my annual check-in with Dr. Reynolds of the Clarian transplant team here in Indy. In light of my recent illnesses and low lung capacity, we decided it is time to proceed with evaluating me for transplant. I'm not sick enough to get listed yet but who knows when another serious infection could put me over the edge.
The evaluation process is a week of medical tests, meetings, etc to evaluate how you would do physically and mentally during the transplant processs. They want to insure you don't have cancer or some other illness that makes you ineligible. It's also important that you and your support network will be able to handle the mental demands that will come. So Clarian started setting up my testing and clearing things with my insurance. Then I got the news; Clarian is currently out of network for my insurance company. YIKES!!! Could it be possible that my center which has been following me for 17 years is really out of network???? We double triple checked it and yes for sure 100% it's true. That may change at some point in the future but right now the only transplant center in Indy is not a possibility for me. It's a total bummer because I really love Dr. Reynolds and think he would be great to have as my doc post transplant.
So the next step was to find out where I could go. In the midwest Cleveland Clinic and Barnes-Jewish St. Louis are the best options. However, I have lots of family in North Carolina and Duke is in network. After lots of thinking, consulting my local docs, and asking questions of the centers via phone, I decided on Duke. It is one of the best centers for lung transplant in the country and has the best pulmonary rehab program. In addition they specialize in transplanting CF people with drug resistant bugs like my Pseudomonas. Seems like a great fit. The distance will be a challenge but thankfully my insurance does cover travel and lodging up to a certain amount. We will have to relocate for about a month pre-transplant and three months post. Since Randy is self employed and works from a laptop we should be able to manage it fairly well.
My evaluation at Duke will be the first week in August. So my mind has been going to Carolina a lot lately. I'm very excited to meet the team down there. However, I'm also a bit worried that they might do all my tests and either a) find something that would disqualify me, or b) say not only are you a good candidate but due to your Pseudomonas progression we think you should be listed now. Granted I don't think either a or b will happen and I'm guessing they will say c) you are a great candidate and we will accept you in our program and will follow you until it's time to put you on the active transplant wait list.
For all of you that are freaking out about this whole transplant thing, know that I've been down this road before. Back in 1992 I was evaluated and put on the active list here locally. At the time I was in right heart failure and on oxygen 24/7. Exercise and a new drug Pulmozyme saved me and transplant was put on hold. Of course it was a major freak out back then to think about transplant at 23. It's easier now but still a lot to wrap my head around. I'm still shooting for growing old with Randy of course and don't want to leave him anytime soon. But the days are getting harder and my energy level is getting lower. Back in 92 my doctor Mason Goodman talked about quality vs. quantity of life. Of course back then I still wanted to hit 35 because that was "old". Now I'm thinking more and more about quality. I've had an amazing and adventurous life up until now and want to have the lungs to forge ahead even if it's only til 50 or maybe even 60. There are still lots of dreams to accomplish and I'm at a point now where it's time to give back and I need more energy to do so.
I'm fully aware of how really lucky I've been and grateful for it every day. CF has given my a wonderful perspective on life. Also, for having CF I'm one of the lucky ones. A recent article (http://www.ctpost.com/news/article/CF-patients-live-longer-some-diagnosed-as-adults-531674.php) had another shocking stat. Only 5% of people with CF survive past the age of 40. When you consider that includes people that have been transplanted it's even more amazing. So without transplant I'm already at 41...yes I'm definitely lucky :)
I guess that's it for now. Thanks for indulging me and listening. Now I'm off to Carolina both in my mind and my body.
Peace, love and happy 4th.
Steph
Subscribe to:
Posts (Atom)
Posts
