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Update on Lung Transplant Evaluation


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#1 miocean

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Posted 26 June 2014 - 04:53 AM

Here is another chapter in the seemingly never-ending lung transplant evaluation that I began 12 months ago:

 

I am now considered a "pre-patient" and have been attending education seminars at the center with my husband. It is required that I take 12 hours of education a year. I have now completed 4. We have picked up some new information but much of it is general post transplant procedures which I am familiar with due to the kidney transplant. The interesting thing is the other people in the seminars. The people that are listed are all on oxygen, even at rest, which I am not as I only need it for exertion. Most are older than I am and look like they have a higher BMI than they should. In my mind, this confirms that I am currently not sick enough and that if my lungs do worsen I am in good physical condition to be listed. I also learned that the doctors meet as a group and discuss the patients.

 

I met with the surgeon, a session that I was very interested in, as he specializes in both the lungs and the esophagus. The damage to my esophagus from scleroderma is what eliminated me from another center and may from this one as well. I asked about a Nissen Fundoplication and he agreed with my Gi and scleroderma doctors  that it would not work for me, that a Dor Fundoplication would be a better solution. With this procedure they leave a donut hole when wrapping the stomach and the esophagus so the food goes down. In one of the education seminars a person who is listed and waiting mentioned that he has bad reflux so this would be fixed after the lung transplant so I asked the surgeon about it and he said that is the way they usually do it. He also looked at my tan skin, told me I had to stay out of the sun and that "we look for compliance." 

 

In a couple of weeks I meet with the lung transplant doctor and have a complete pulmonary function test. This will be the first PFT at this center so I do not know if it will differ from others that I have had a my doctor's and scleroderma center. I plan on asking him what the other doctors at the discussion have brought up about my case. I also have an appointment with the pulmonary hypertension specialist and may need another right heart catherization.

 

All in all I am doing well. I do need to use oxygen when walking or exerting myself, but not in slow movements or walking on flat surfaces for short distances. I need to remember to move slowly and do pursed lip breathing. The humidity at this time of the year makes breathing a little more difficult but I am able to do the things I enjoy with moderation. I have even been able to go in the ocean, and you know how much that means to me!

 

miocean


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#2 Shelley Ensz

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Posted 26 June 2014 - 02:41 PM

Hi Miocean,

 

Wow, the pre-patient education program sure sounds interesting. So does the Dor Fudoplication.

 

Giving up sunshine is a pretty big topic, it might be enough for a whole thread by itself.  Did you get the shakes at the mere thought of it? :temper-tantrum:

 

It is beyond weird how the lung transplant listing formula works, since they eliminated the old seniority system.  It is not as straightforward as kidney transplants. Some people can barely even be on oxygen but get a transplant, and others can be on heavy doses for years but not eligible to hit the top of the list yet. A lot as to do with what the underlying disease is, so, for example, someone with a currently "mild" case of pulmonary fibrosis can beat out someone with a severe case of COPD.  It has to do with anticipation of the usual progression of the disease as well as the individual circumstances.  Being in the best shape you can possibly be, as you are now, rightfully puts things in your favor for not only getting a transplant, but benefitting from it, as well.

 

:emoticons-group-hug:


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Shelley Ensz
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Hotline and Donations: 1-800-564-7099

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#3 Joelf

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Posted 28 June 2014 - 11:43 AM

Hi Miocean,

 

Thanks so much for letting us have the latest update about your lung transplant evaluation and I'm so pleased that in spite of everything that's going on for you, you are doing well. :great:

 

I shall be thinking of you and do hope everything goes well when you meet with the lung transplant doctor and also with the pulmonary hypertension specialist.

 

Best wishes,


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#4 Amanda Thorpe

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Posted 29 June 2014 - 10:54 AM

Hello Miocean

 

Yet again it amazes me how well you go through what scleroderma throws your way, you are amazing and I'm not the only one who thinks so. You will sail through any procedure and thank you for sharing your journey with us.

 

Take care.


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#5 Jeannie McClelland

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Posted 03 July 2014 - 05:57 PM

Hi Miocean! I'm pretty much in the same O2 boat as you. When I first started at my scleroderma center, I kept running into older gentlemen who seemed to be blowing kisses at me. Kind of nice, but I'm an old married woman so I just gave them a wink and kept trundling along on the treadmill. Imagine my dismay when I found out about pursed lip breathing!!

Anyhow, I think of you often and I'm blowing you a (real) kiss. I'll hold you and your potential transplant in my thoughts.
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#6 miocean

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Posted 17 July 2014 - 03:42 AM

I had a follow up at the transplant center two days ago and found it very discouraging. The doctor reinforced that my esophagus is not working. I brought up the possibility of fixing it and he said that would be discussed when he presents me. He now wants me to have a barium test to see how my small intestine is working. I've already had a barium swallow and a gastric emptying study. It seems like an entire upper GI series could have been done, testing the esophagus, stomach and small intestine all at the same time so why didn't they just do that to begin with? After this test he said he'll present me. It just doesn't sound like they will list me. I've known this from the beginning but it is frustrating to go through a year of testing to end up in the same spot as I started. He also commented on my tan again and the risk of melanoma.

 

I then had my pulmonary function tests and they also tested my muscles. The regular part was no problem. I have never had my muscles tested and had trouble with that part. They block the line you breath out so it feels like you are blowing into a balloon that won't blow up. I had to use my hand to wrap my mouth around the mouth piece to prevent air loss. Since my hands don't work very well the first two times I tried it air escaped. The technician finally had me use both hands and that worked, she said my muscles are fine. I asked for the results and she said the doctor would have them in a day but gave me a copy of them on the spot. All of my numbers have gone down since January: my diffusion has gone from 31 to 25, my total lung capacity from 59 to 57 and my forced vital capacity from a predicted of 2.12 to 1.96. I have a call into the doctor for interpretation as this test uses the reference scale of Crapo/Hsu and it looks like my others use the EigenWang. The tech said the scale used might make the numbers different. 

 

Needless to say this was very depressing. On top of that my lungs hurt from all the testing. I was really at the bottom yesterday. But today is another day and I will pick myself up and go on.

 

Stupid scleroderma.

 

miocean


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#7 Joelf

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Posted 17 July 2014 - 09:36 AM

Hi Miocean,

 

Really, really sorry to hear this; how incredibly frustrating to have to undergo so many tests and have your hopes raised, only to be disappointed at the end (even though you knew that it could be like that, it's still very depressing. :( ) I do sympathise; my lungs always hurt after I've had lung function tests.

 

I don't know much about the procedure for being listed for lung transplants, but I do hope that you have more positive news after the barium test.

 

Thinking of you,


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#8 Shelley Ensz

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Posted 17 July 2014 - 10:58 AM

Hi Miocean,

 

I'm sorry that you are encountering more discouragement in the lung transplant application process. It's good that you are finally making to the point of being presented.

 

Just so you know, Gene was presented many times, during his second listing, and each time the decision was inconclusive, with request for yet another test.  And then his case was presented again, etc. and this went on every few weeks for months. Some people get so discouraged during the process that they just drop out. Others get depressed, and that is held against them because people who are depressed are not good survival risks. So as hard as it is, and I surely know it is, this is time to yet again deploy your usual upbeat, reslient attitude.

 

We managed that by saying that it was fantastic that they were not listing Gene yet if they weren't 100% confident in his transplant success. And we took it upon ourselves to take the coffee shop tour of the cities -- a different coffee shop every single day, all within about twenty minutes of the transplant center.  That way, whenever they called for yet another test, we could happily leap right on it, and grab the paperwork or have the test done right away. And, picking out a different coffee shop kept our mind occupied with adventure, and with savoring that day.

 

Try to think of it as "great news" when they request another test, because it means you are still in the running! 

 

They are not joking, for a single second, about the dangers of sun in lung transplant patients. The risk is enormous, so they will not do a transplant if they have any reason to think that you are going to quickly die from skin cancer anyway. To them, it would mean that you won't actually treasure the gift of life. Some people need counseling to give up tanning, because sunshine has addictive properties that many of us are susceptible to. A good message to your transplant team would be that you are willing to give up all sun exposure, sunbathing, beach activities, wear sunscreen every day (all that is required after transplant, anyway) and even go to regular counseling if they want or if you feel the need for it, sign a contract if necessary, and, most importantly, follow through.  But with the esophagus alone, all that might be a nonissue which might be why you've tabled this subject for the time being.

 

Now, the flip side of this, and maybe the happiest thought of all for you, is that if they decline you anyway, regardless of what reason, then what or who is to stop you from enjoying your ocean and sun activities?  Sometimes, it just seems that life is short, it is meant to be enjoyed, and it's not the end of the world if we just simply enjoy it. Many people have preferred their vice (or habit) over longevity. The human race is rife with examples!  So if that is the route we choose, it is what we knowingly choose and who cares if someone else would decide differently?

 

Okay, have we dusted you off enough to face another day?  It would be nice to get listed, if it will truly be a benefit to you.  It would not be nice to be listed if it's just going to bump you off even quicker or entirely trash your quality of life. So, both ways, you win, if you let yourself. The important thing is that, come what may, we are all here for you.

 

:emoticons-group-hug:


Warm Hugs,

Shelley Ensz
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Hotline and Donations: 1-800-564-7099

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#9 miocean

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Posted 18 July 2014 - 06:49 PM

Thanks Jo and Shelley. As usual, you've said just the right things to lift my spirits! Fortunately I do bounce back quickly and am feeling more positive about the lung issue. Whatever happens I was given 10 years more already than I should have so that is a plus.

I have the same risk of skin cancer from the kidney transplant and am very compliant about seeing the dermatologist for the least little thing I find.

There is the option of going to another center if I choose. I wonder how and when one decides enough is enough. I've already decided that I'm going to do what I can while I can so I planned another trip for the fall!

miocean
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#10 Shelley Ensz

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Posted 24 July 2014 - 01:21 PM

Hi Miocean,

 

We checked out three transplant centers for Gene. He was automatically disqualified from one. He picked the center that did the most lung transplants, and that was also closest to home. Then we stayed with that center through thick and thin.

 

If I were you, I'd be prone to waiting it out with this center first, to see what their final decision is. You're probably feeling cold feet right now. Unless they've gone through it, nobody else can understand how nerve-wracking this stage is -- nor how uncomfortable it is as the uncertainty drags on and on and on.  You're going to have that long wait at any center (unless you score a quick, flat "no"), so changing centers now isn't going to lessen the pain of waiting and in fact would probably drastically increase it.

 

The monster you're dealing with right now is probably called Uncertainty.  The trick is to make yourself happy with not knowing. Pretty cute trick, at that, eh?

 

:emoticons-group-hug:


Warm Hugs,

Shelley Ensz
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Hotline and Donations: 1-800-564-7099

The most important thing in the world to know about scleroderma is sclero.org.

#11 CmeBe

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Posted 24 July 2014 - 01:30 PM

Hello Miocean,

 

I think no matter what positive attitude is key! I may not be in the same boat as you are but from what I've read I believe you are truly strong enough to take it on! Going to the second center may be a good idea just to hear what they say as well. Two opinions never hurt! I wish you the best and I hope it all goes well. I will be thinking of you! Just stay positive and even in your worst days tell yourself that you will win no matter what!

 

:emoticons-clap:  :emoticons-yes: You can do it!!



#12 miocean

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Posted 24 July 2014 - 04:54 PM

This is all so very different from the kidney transplant. Once I knew I qualified it was just a matter of waiting and I waited 5 1/2 years so I guess I can wait for this as well...

 

I am so very fortunate to have so much support from you and the people close to me! I saw my pulmonologist today and the bottom line with my pulmonary function test is that my diffusion has gone down around 7%.  All the other numbers transpose about the same. So I guess its not all that bad. He received notes from the lung transplant doctor and they didn't have any of the negative things said to me, just clinical facts about tests that were done and what others to come. So I guess that is a positive as well. They haven't said "no" yet.

 

We discussed applying to another center. He suggested I call there and talk with someone about my situation and see if they would want to move forward with me. He thinks it is best if I do it because I can answer their questions better. My husband and I talked about it and he is willing to do whatever I want. This center would involve relocating temporarily.

 

I think your advice, Shelley, is what I will follow. Thankfully, right now I don't need a transplant. If things deteriorate I can always apply to the other center. I need a little break from all this. In a couple of weeks I see the pulmonary hypertension specialist, have an Echo and will see if another right heart catherization is in order, which I am pretty sure will be. That is enough on my plate for now, especially dealing with the pain from the calcinosis.

 

But then, that is another thread.  :lol:

 

miocean


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#13 miocean

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Posted 25 July 2014 - 07:05 AM

I received a call this morning from the transplant center. I was presented today and due to scleroderma , esophagus dismotility, pulmonary hypertension and a kidney transplant I am not a candidate for a lung transplant there.

Time for Plan C.

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#14 Shelley Ensz

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Posted 25 July 2014 - 07:56 AM

Hi Miocean,

 

I am so sorry you were declined as a lung transplant candidate at that center!  I wish we could all be there now to give you a great big group hug. :emoticon-hug:

 

What I don't entirely understand, though, is why they saved these objections until now.  They knew when you applied that you had scleroderma, esophageal dysmotility, pulmonary hypertension and a kidney transplant. Those are not disorders they just happened to discover in the course of testing you for a transplant.  If they knew in advance they were all deal-breakers, why were you put through all of that? Unless maybe each item by itself isn't a complete dealbreaker -- just the whole package, altogether, makes things too risky for all involved?

 

How disappointing!  :crying:

 

So, okay, yes, Plan C. You know we are here for you, no matter how many Plans are needed.

 

:emoticons-group-hug:


Warm Hugs,

Shelley Ensz
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Hotline and Donations: 1-800-564-7099

The most important thing in the world to know about scleroderma is sclero.org.

#15 Joelf

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Posted 25 July 2014 - 09:20 AM

Hi Miocean

 

Oh no, how disappointing for you; I am sorry!  :crying:

 

I suppose the only positive about your news is that you have had a final decision from them at last, so you can plan accordingly. Rotten for you, though and rather a waste of your time with all the extra tests etc. Perhaps, as you say, you could get the problem with the calcinosis hopefully sorted and then if things deteriorate you could apply to another centre.

 

I'm joining Shelley to give you a very comforting group hug.

 

:emoticons-group-hug:

 

Best wishes,


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#16 Amanda Thorpe

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Posted 25 July 2014 - 12:57 PM

Hello Miocean

 

Yet another blow, you should know, you have made it through many others. I don't imagine having a kidney transplant was a walk in the park.

 

Maybe consider what Shelley said in her second post on this topic:

 

"Now, the flip side of this, and maybe the happiest thought of all for you, is that if they decline you anyway, regardless of what reason, then what or who is to stop you from enjoying your ocean and sun activities?  Sometimes, it just seems that life is short, it is meant to be enjoyed, and it's not the end of the world if we just simply enjoy it. Many people have preferred their vice (or habit) over longevity. The human race is rife with examples!  So if that is the route we choose, it is what we knowingly choose and who cares if someone else would decide differently?"

 

Surviving a progressive, incurable illness can give us the perpetual need to survive-at-all-costs-as-long-as-possible mentality but we might actually be better off considering the enjoying-what's-left-of-our-life-as-much-as-possible mentality. Sometimes it's worth taking a moment to consider this.

 

Whatever happens every single one of us here is on your side wishing we could be by your side.

 

Take care.


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#17 miocean

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Posted 25 July 2014 - 03:41 PM

This brings up the question treatment versus no treatment.

 

Although it will be difficult my husband is willing to pursue evaluation at the center that does high risk scleroderma patients even thought is a long trip there.. I am going to give it a rest for a little while and then find out if they would consider me. I have all the tests to forward to them if they will.

 

Shelley, the coordinator told me the doctor knew of my complications but wanted to give me a chance. (And having good insurance probably helped as they made quite a bit of money from all the appointments and testing.) I did gain some good things from the experience, I now have an excellent pulmonary hypertension specialist, a new GI doctor who is familiar with scleroderma, and we have driven in New York City so many times it is easy now.

 

Thank you all as always,

 

miocean


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#18 Shelley Ensz

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Posted 28 July 2014 - 07:07 AM

Hi Miocean,

 

One of the transplant coordinators once told us, early in Gene's screening, that they evaluate 100 people, for every 1 that they accept. Now, she might have told us that just to temper our expectations, so it might not be entirely true, but then again, there is always the unfortunate but unavoidable profit motive driving many medical situations.

 

In order to keep your spirits up, so that you can enjoy life and have a shot at another transplant center, keep on focusing on the benefits of your experience, just as you are already doing.

 

Another huge benefit for you is that you have now been officially examined from head to toe so you know exactly what you are dealing with, on every front. Having excellent PH and GI doctors can be priceless and maybe more life-extending than a lung transplant, too.

 

It's very hard to look at the down side of transplant, when we are focused on all the hopes of the up side, but a fair number of people die during the lung transplant operation or recovery.  We did our best to try to tune out information like that, but Gene's coordinator had a special way of always bringing us back down to earth.  Once, immediately after saying that he was listed -- right at the point we were getting so excited and wanting to celebrate! -- she launched into a story about how one of their patients got so excited about her transplant that she had a heart attack and died as she was being wheeled into the operating room!

 

So I figure that at least you are not in any danger of dying from sheer excitement today. I try to keep in mind that none of us are a failure if we fail to live forever; eventually all of us run out of life-extension options and the only way to circumvent that is to focus right now, this moment, on our life appreciation options. What can we see, hear, smell, touch recall or envision right now that can bring us a sense of wonder, gratitude, or joy?

 

What I can see right now is that we are very blessed to have you with us, I'm very grateful for that, and it brings me a lot of joy!

 

:emoticons-group-hug:


Warm Hugs,

Shelley Ensz
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Hotline and Donations: 1-800-564-7099

The most important thing in the world to know about scleroderma is sclero.org.

#19 miocean

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Posted 29 July 2014 - 03:50 AM

Fortunately, or unfortunately, going through the kidney transplant process gave me a great awareness of the ups and downs of transplantation. I had 8 living donors, each time one volunteered I got my hopes up, each one was turned down for one reason or another. One was so promising I went 1,000 miles away for 10 days of testing and was accepted only to have the donor turned down. I received several calls for a kidney before the one that was right for me came along. The man who sat in my dialysis chair on the shift before me died from a heart attack a couple of days after his transplant, he never left the hospital. Another person I know went into rejection right after transplant and then had to wait a few more years for another. There are definitely risks.

 

I know lungs are even more difficult and scarce and how precious organs are.  Although disappointed that I was not accepted I am in full agreement that a person that has a good chance to maintain the organ should receive it over someone who is a high risk to lose it.

 

Rejection is just hard to handle. It reminds me of applying to colleges and being turned down by the first choice. However, I ended up at the school that was right for me. It reminds me of submitting work for art shows only to be turned away. But then, there were art shows I got into and sold work or won awards. 

 

It's not like I've been thinking, "oh goodie, goodie, I get to have a lung transplant."  :emoticons-line-dance: It actually scares me even more than the kidney transplant did and I was pretty afraid of that. I know how much better I feel now though and how much better my quality of life is.

 

I am very fortunate to have the life I have now.

 

miocean

 

 


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#20 Sweet

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Posted 29 July 2014 - 12:26 PM

Oh shoot. I am so sorry. How disappointing. You're a trooper, hang in there!


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