31 posts in this topic

Hi Miocean,

 

Oh my goodness gracious. Are you going off the diuretic even though the swelling isn't gone yet? I may be wrong, I often am, but isn't oxygen crucial to help deal with the cardiac edema?  If he wants you on oxygen full time now, I hope that you are able and willing to do that, for the time being.

 

When Gene was on oxygen, one of his doctors repeatedly pointed out that he was not on oxygen for his lungs or even to alleviate shortness of breath, but rather to reduce the stress on his heart and help to avoid heart failure.  Whereas, so many people on oxygen (or who are supposed to be on oxygen), think of it as only necessary for the shortness of breath.

 

That's discouraging news from the transplant center but not incredibly surprising, either. Just start working on the next center and move on down the list. Gene consulted three lung transplant centers before picking the one that was best for him, and that he had a good chance of being accepted at, as well.

 

And of course the calcinosis is acting up!  That's just Murphy's Law, isn't it? 

 

If you haven't already, please start cranking on the oxygen, 24/7.  Every cell in your body needs it, probably even those cranky calcinosis cells.

 

:emoticons-group-hug:


Warm Hugs,

 

Shelley Ensz

Founder and President

International Scleroderma Network (ISN)

Hotline and Donations: 1-800-564-7099

 

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

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Hi Miocean,

 

Oh dear, I'm so sorry that your symptoms seem to have worsened again and that you're feeling so poorly. I'm sure that the worry of your additional lung problems isn't helping either and the overall stress of the situation is making everything so difficult.

 

Are you able to go to your beach and perhaps gather some comfort from that? I don't know whether your weather has been conducive to being by your ocean; we have had a few good days (thankfully when we were in our caravan, or it might have put us off caravanning for ever! ;)) but now it's reverted back to windy and cool again.

 

I really hope that your lab work improves at the end of the week and that you get more encouraging news from the lung transplant centre. Please know that I'm very concerned and worried for you and hope that things improve very soon.

 

Best wishes,


Jo Frowde

ISN Assistant Webmaster

SD World Webmaster

ISN Sclero Forums Manager

ISN News Manager

ISN Hotline Support Specialist

International Scleroderma Network (ISN)

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Shelley,

I had to go off the diuretic or I could go into rejection of my kidney with the high numbers I had. It is such a dilemma with the transplant, what is good for a lot of people is not good for me. It was the same with dialysis, too. I am using the oxygen almost all the time, whenever I am moving around and when I am sleeping. Perhaps my labs on Friday will improve and they will put me back on the diuretic.

I spent this morning calling places about palliative care or a better doctor. I don't qualify for the palliative care at my hospital because I am too young! You have to be 65 there. The person I spoke with was lovely, she knows there is a need for people in my position and felt bad she couldn't help. She did suggest a primary care doctor and said that the doctor that does the concierge medicine is excellent. She also gave me the number of another hospital that may have palliative care for someone my age so I have a call into them. I called the PC she recommended and asked it I could set up an appointment to discuss my needs with him and was told I would have to switch my PC to him before he would even consult with me. I didn't like that and decided to consult my nephrologist to see who he recommends since they have to work so closely. I now have a name of another doctor to call to see if he will take me on and provide what I need.

I called the concierge doctor and his office referred me to a general number to answer my questions, apparently he is part of a national group. Unfortunately, some of my questions couldn't be answered and they are sending me a brochure. The cost would be $1,800 a year out of pocket but my questions about other co-pays and how he would work with my other doctors were not answered on the phone. I didn't quite like this, either.

I told myself this morning I would allocate 1 hour daily to deal with medical issues but this went well over. My husband and I decided to go for a walk by a reservoir as the beach was chilly. Just as we pulled into the parking lot a received a call from the lung transplant center saying they wanted me to come for evaluation and a barium swallow! It was a different person from yesterday so I asked if this meant they would consider me as a candidate and she said yes! I didn't have the necessary information to register right then and needed to check with my nephrologist about the barium and the kidney. Another phone call and found out It is okay to go ahead.

So tomorrow my hour of medical calling will involve calling the lung transplant center back and seeing about the new PC doctor. I thought about setting a timer today but didn't and I am a "little" compulsive so kept on going. Tomorrow I will set the timer...

I have really mixed emotions about a lung transplant but I am following the advice I give end stage renal patients: as soon as you are qualified to list, do it. You can always say no at a later date.

As I say, you are the best! Just seeing your posts made me feel better. You are always there.

miocean


ISN Artist

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Hi Miocean,

 

I sure do know what a delicate balance it is to keep everything squared away with the transplant meds. I'm sorry you had to stop the diuretic before the problem was resolved. I hope your next labs turn out in the acceptable range.

 

That's a great idea, for setting the timer to limit the time spent on the medical calls each day. :emoticons-yes: :terrific:

In fact, it's such a great idea, that I just now decided to set a timer to limit the time I spend on housekeeping each day. Oh buzz, did you hear that, I must be done already! :thank-you:

 

:emoticons-group-hug:


Warm Hugs,

 

Shelley Ensz

Founder and President

International Scleroderma Network (ISN)

Hotline and Donations: 1-800-564-7099

 

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

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Although I didn't set the timer I did spend less than an hour today resulting registering and making an appointment with lung transplant center #1 in June for a barium swallow and beginning interview. I called the PC doctor and have an appointment set up there.

 

I received a call from the second transplant center, just for a couple of questions about skin cancer. I found that interesting, with all my medical complications that was the one they wanted answered...

 

miocean


ISN Artist

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Hi Miocean,

 

Oh, yeah, heartburn is a major concern for potential lung transplant patients. They have found there are much worse outcomes in people who have heartburn, so one of the criteria at the center Gene went to was that potential lung recipients couldn't have any heartburn.  However Gene had horrible heartburn and had had some esophageal erosions and had to have his esophagus stretched a number of times. So they refused to accept him for transplant unless/until he had a Nissen fundoplication surgery done, in hopes of alleviating the heartburn.

 

One of the transplant surgeons did his Nissen, and while he was in there, he moved Gene's stomach so that he would be able to also accept a left lung at transplant.  After that, the tests proved that Gene had no more heartburn, and he was finally accepted for listing (the first time around.)  Years later, it turned out that Gene got a single left lung transplant, so he was thrilled that all the groundwork had been laid for it.

 

I'm also surprised they picked the skin cancer, of all things, to focus on.  They probably just wanted to know if it was a fatal variety which is going to bump you off within 8 years.  Just in general, one of their goals for lung transplant recipients is that they want recipients to live as long as possible afterwards. Each center has its own running tally for longevity. Gene's center had an 8-year batting average, which means, on average, the lung recipients lived for 8 more years after surgery.

 

So, if/when they accept you, get excited, because you can figure they have figured out that you have, on average, at least 8 more years left on your warranty!  Most people might not figure that's so great, but when you are staring a few more weeks or months in the face, it sounds downright fantastic.

 

:emoticons-group-hug:


Warm Hugs,

 

Shelley Ensz

Founder and President

International Scleroderma Network (ISN)

Hotline and Donations: 1-800-564-7099

 

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

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Oh mi,

 

Despite your issues, you keep plugging along, taking care of business! :emoticons-clap:

As so many of us have said; You TRULY are an inspiration :thank-you:  We need that, especially when it really is much easier to just go take a nap; however, that doesn't take care of what needs to be done...as one of the BEST procrastinators, I know ALL about how it's DONE ;) ( I KNEW I should have made that my New Years resolution; To stop procrastinating.

 

mi, I'm just glad the ball is rolling, with respect to the lung transplant, albeit a tough area to wrap your head around, at this point in time. However, once you've jumped through all of the necessary hoops, I'm hoping you will feel a bit better about the concept.

 

Yes indeed; it does seem an "off the wall" query...asking about skin cancer; hopefully it pertains.

 

Just know you continue to be in my thoughts, hoping the best for you always. Sending you more hugs to tide you over. :emoticon-hug:  :emoticon-hug:


Special Hugs,

 

Susie Kraft

ISN Support Specialist

ISN Chat Host

International Scleroderma Network (ISN)

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Miocean, do you have any more progress to report on the lung transplant issue? Is it all moving along okay?

 

:emoticons-group-hug:


Warm Hugs,

 

Shelley Ensz

Founder and President

International Scleroderma Network (ISN)

Hotline and Donations: 1-800-564-7099

 

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

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I saw my scleroderma specialist yesterday and am now enrolled in two studies, one for calcinosis in scleroderma and the PHAROS (Pulmonary Hypertension Assessment and Recognition of Outcomes in Scleroderma) study. They are tracking studies. I also filled out the paperwork for Adcirca which is the same as Cialas (tadalafil) for the pulmonary hypertension. She seemed to feel that getting fluid off me and treating the PH would help, even said I might not need oxygen anymore. She also said I test low on the antibody test which would show a high risk for lung disease. Of course, at the time I didn't think to ask her then why do I have lung disease? But I have had lung disease for 9 years now and I am still here!

 

​The interview at the first  transplant center is June 18th. I have not heard anything back from the second one.

 

Once again, I am hearing different things from different doctors (the cardiologist doesn't think it is fluid) but have just decided to go with the flow for a while. I look good and feel good and my kidney is doing well so I am not going to try to micromanage right now.

 

I'll keep you posted,

miocean


ISN Artist

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Hi Miocean,

 

Thanks so much for letting us have an update.

 

At least you're feeling quite good at the moment and things seem to be under control. I hope your appointment on 18th June at the lung transplant centre goes well and I shall be keeping my fingers and (everything else crossed!) for you.

 

Best wishes,


Jo Frowde

ISN Assistant Webmaster

SD World Webmaster

ISN Sclero Forums Manager

ISN News Manager

ISN Hotline Support Specialist

International Scleroderma Network (ISN)

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Hi Miocean,

 

Thank you for participating in several research projects -- that helps us all, eventually -- and good luck with the new medication. I hope it helps and wouldn't it be wonderful if it helps a whole lot?

 

But oh my, that all sounds confusing to me. Do you ever find yourself going cross-eyed in doctor appointments?  It's the fluid, it's PH but not the fluid, you don't have fluid, and here's a pill for the fluid. It's the lungs, it's not the lungs, its your heart, you have the lung antibody, you only have a low lung antibody, you have lung involvement, you need a lung transplant, use your oxygen, but take this handy dandy little pill and you won't need oxygen at all, but good thing your lung transplant appointment is next week, and oh my, you sure do look good, why I wish I had more patients as healthy-looking as you!

 

I'm exaggerating, of course! 

 

:emoticons-group-hug:


Warm Hugs,

 

Shelley Ensz

Founder and President

International Scleroderma Network (ISN)

Hotline and Donations: 1-800-564-7099

 

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

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Shelley,

Unfortunately you are not exaggerating. At least someone understands.

miocean


ISN Artist

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Hi mio,

 

As usual Shelley has hit the spot.   I often wish I could put things as cleverly as she does.

 

However,most of us do know exactly what you are experiencing and every time somebody suggests to me to try this handy dandy little pill, I fall for it.

 

Best of luck and keep on keeping on.

 

Judyt

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Hi Judy and Miocean,

 

Probably the only reason I can nail some of these things is because I've experienced them myself, and it leaves me wondering sometimes if I'm the only person whose head feels like it is spinning in circles at some (okay, many) medical appointments.

 

Some days, or years, or doctors, are better than others. But generally there manages to be at least one source of mass confusion that can nearly derail my medical care for a spell. And even the best of doctors are seldom on exactly the same page, especially when there is complex illness at stake. Every specialist tends to look at parts instead of people and we are left juggling the big picture and trying to sort out exactly who we should really listen to regarding this, that and the other thing.

 

Sometimes, we have to take it all with a grain of salt, a shrug, or a "whatever, I am not going to micromanage this" approach, such as Miocean has so wisely assumed to resolve the conflicts.

 

:emoticons-group-hug:


Warm Hugs,

 

Shelley Ensz

Founder and President

International Scleroderma Network (ISN)

Hotline and Donations: 1-800-564-7099

 

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

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Did I ever tell you I love you all for being there and understanding?  :you-rock:

 

(oh yeah, I think I did but I'll say it again)    :D

 

:emoticons-group-hug:

 

miocean


ISN Artist

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