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Kidney Transplant Anniversary


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#1 miocean

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Posted 11 March 2014 - 03:45 AM

Four years ago today I was in surgery receiving a kidney transplant. This is a day of mixed emotions: although I am celebrating today for this gift of life I know there is a family who is grieving. They know how much I appreciate this gift as I have anonymously sent notes to them over the years. It is a day that is both happy and sad.

 

I will be spending it at the lung transplant center going through interviews for the process of a lung transplant. Today I see a nutritionist, a psychiatrist, a social worker, and a financial planner. Not exactly the way I would choose to celebrate! 

 

Next week I see the transplant doctor and the following week an endocrinologist. That should finish up the testing and screening. 

 

miocean


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#2 Joelf

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Posted 11 March 2014 - 08:24 AM

Hi Miocean,

 

Happy Anniversary wishes to your kidney!! :)

 

I'm so glad that your kidney transplant is continuing to be successful and I'm sure that the donor's family must draw a lot of comfort from the appreciation you show them, albeit anonymously.

 

I do hope that all will go well with your various interviews for the lung transplant and also when you see the transplant doctor and endocrinologist.

 

Best wishes,


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#3 debonair susie

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Posted 11 March 2014 - 10:26 AM

Hi Miocean,

 

Thinking of you today as you trek through your appointments, getting ever closer to a lung transplant.

 

I hope this gives you comfort, what I'm going to say...

 

The family of the kidney donor would be VERY pleased if they knew of how you have "passed it on", through your support of others, just here on the Scleroderma Forums!

 

You are a wonderfully, caring, giving and special lady! :yes:

You have shared (here), for the benefit of all members, your "walk" ...through trials, your trek up to and (including) your kidney transplant, it's effects and how it has added to your better quality of life.

 

 

You have been a member here for many years and you have been SUCH a great friend to so many of us, through your loving support and I (for one) thank you for that, Mi!  :emoticon-hug:

 

Please know that there are a BUNCH of us rooting for you! :emoticons-line-dance:


Special Hugs,

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#4 judyt

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Posted 11 March 2014 - 11:58 AM

Hi mio

 

Is it really FOUR years!!

 

Doesn't time fly when we are having fun :emoticon-dont-know:

 

Best wishes for your ongoing testing, I can't help but think that it must be tedious some of the time.

 

Love and best wishes

Judyt



#5 Shelley Ensz

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Posted 14 March 2014 - 11:34 AM

Congratulations on your four-year-aversary, Miocean!  :balloons:

 

I'm thrilled that you have made it so far and you have certainly made the most of your bonus time with your new kidney. :terrific:

 

How did things go with the lung transplant appointments this week?  I am rooting for you!  :emoticon-hug: 


Warm Hugs,

Shelley Ensz
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#6 miocean

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Posted 15 March 2014 - 05:29 AM

The meetings with the psychiatrist, nutritionist, social worker, and financial planner went well. I was surprisingly calm, no anxiety. I've done everything that was suggested, finished pulmonary rehab, lost weight, sought therapy when needed, been compliant with medications, etc. Amazingly, each professional had read my file and knew about me! The financial planner was not able to get information from my secondary insurance but is looking into it. They said they would be there for me every step of the way and if I needed anything at any time to contact them.

 

My husband did a great job during the interviews. I did come to the realization that besides him I do not have many support/caregiving people, or at least I didn't think so at the time. Since then a cousin has offered her help, and she is a nurse. My sister lives far away, but has always offered to come if I needed her. There are probably others who would help...I will have to think about this. I am one of those (like most of you) who finds it difficult to ask for help.

 

This week I meet with the transplant doctor. I have some questions about interpreting some of the tests I had. I also see my pulmonologist the day before so he can help with my questions.

 

The following week I see a bone endocrinologist and that should finish me up. Then the team will get together and decide whether I am a candidate or not. I have mixed emotions about this.

 

I have been trying my best to do what I have to do and then let go of it. Not so easy for the Queen Of Worrying! 

 

miocean


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#7 Margaret

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Posted 16 March 2014 - 05:29 AM

Hi Miocean.....it's hard to believe it's been four years!! I'm happy you're doing well with the kidney but sad that you have another transplant in your future.  I will keep you in my thoughts that all turns out well.

 

Take care, Everyone.

Margaret



#8 Amanda Thorpe

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Posted 18 March 2014 - 01:19 PM

Hello Miocean

 

Congratulation, I am mighty glad your first transplant was a success and continues to be. I hope that your lung transplant is also something we celebrate at year 4, 5, 6 etc.

 

Take care.


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#9 Joelf

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Posted 07 April 2014 - 04:10 AM

Hi Miocean,

 

I've been thinking about you and wondered how your evaluations and further interviews for the lung transplant are going?

 

Best wishes,


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#10 Sweet

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Posted 07 April 2014 - 05:26 AM

Congratulations on your four-year-aniversary, Miocean! 

 

It made my heart feel good to hear you say how supportive your husband is. I wish you the best!


Warm and gentle hugs,

Pamela
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#11 miocean

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Posted 14 April 2014 - 03:56 AM

Hi all,

I have met with the lung transplant doctor and an endocrinologist. All of my thyroid panels came back normal. I am now considered a "pre-patient." I have not been accepted to the program but will be seeing the lung transplant doctor every 3 months. When my next visit is scheduled in June I will see the surgeon and have a repeat of my pulmonary function tests.

 

Basically, my lungs are not damaged enough to be considered for transplant at this time and the damage to my esophagus may exclude me from being a candidate. I am at the same place I was last year with no complaints. The damage to my lungs is not increasing and I have found some great additions to my ever growing list of "ologists!"

 

I'll keep you posted!

miocean


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#12 Joelf

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Posted 14 April 2014 - 10:28 AM

Hi Miocean,

 

Thanks so much for the update.

 

It does sound as if it is good news, especially as the damage to your lungs isn't increasing and that your team are aware of it and so you do have the option of being reviewed on a regular basis.
 

I'm very pleased for you and hope that everything does stablise and perhaps even improve! :)

 

Kind regards,


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#13 Shelley Ensz

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Posted 16 April 2014 - 10:03 AM

Hi Miocean,

 

My goodness, you have certainly gone through an awful lot for what sounds like some rather uncertain answers. 

 

The first time Gene was evaluated for lung transplant, he passed everything except for esophageal issues.  They said in order for him to qualify, he would have to have an (entirely successful) Nissen fundoplication surgery to stop his heartburn and get rid of a very large hiatal hernia (his surgeon said it was the size of a salad plate).

 

Luckily for him, the Nissen entirely stopped his heartburn, which had been so bad as to cause large ulcers and strictures for years.  After it was healed, he had to be tested to prove he had no heartburn, and then he was finally accepted for listing on UNOS.  But, this was just a month before they changed lung transplants from the old tenure system to the new points-for-severity system.  The point system lowered him on the list -- and in part because he had COPD, and they give people with pulmonary fibrosis more bonus brownie points even if their lung involvement isn't very severe (yet).

 

Anyway, did they mention anything about a Nissen, or anything else you could do to quell their concerns about heartburn (since it lowers transplant survival)?

 

It's great to not be bad enough to have to have a lung transplant post haste. But it would also be nice to be able to qualify for one, too, in the event things happened to get worse.

 

:emoticons-group-hug:


Warm Hugs,

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

#14 miocean

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Posted 17 April 2014 - 06:41 AM

Hi Shelley,

 

Both my scleroderma specialist and my GI doctor have told me a Nissen fundoplication would not work for me, that it would just cause more issues in the future. I brought it up at the lung transplant center and was told that different doctors have different opinions, so it is possible they may consider it. I'll bring it up again at my next appointment. I know how reflux damages the lungs and completely understand why precious lungs would not be transplanted in me if I would only damage them. 

 

There is a center I could apply to that does higher risk patients but it is far away. We would have to relocate and I just can't  think about that right now.

 

I'm just grateful that I can function fairly well using oxygen only for exertion. We just returned from a 2 week trip and I was able to go to the beach and go in the ocean. And you know how happy that makes me.  :emoticons-line-dance:

 

miocean


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#15 Shelley Ensz

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Posted 18 April 2014 - 12:15 PM

Hi Miocean,

 

Huh.  Well, you know, every case is different and doctors frequently differ in their recommendations. Sometimes it just depends on how familiar they are with a certain procedure. There are some slight differences in how they do Nissens for scleroderma patients; I think it is usually a partial rather than a full (or the other way around). And a huge factor in its success is the experience of the surgeon; it is the most important consideration of all. Some centers specialize in redoing Nissens that other surgeons messed up, which is a rather scary thought. I would not ever want anyone messing up my throat, thank you very much.

 

An interesting thing I discovered, when doing research for a surgery I had a few years ago, was that the majority of surgeons lie about their experience, and always in favor of over-estimating the number of particular surgeries they have done, and possibly even their success rate. 

 

So if by any chance you or your doctors are going to further consider it, you would put the odds more highly in your favor of a successful outcome by doing significant research on the best hospital for it, as well as the best surgeon at that hospital -- and then consult with that surgeon (and only that surgeon, and make sure they will not just supervise a resident or another surgeon, as they often end up in teaching positions).  And never take the surgeon's word regarding their track record; seek out the facts.

 

In the course of my research on that surgery, one surgeon -- who was highly recommended in our area -- told me that he did the minimally-invasive sort of surgery that I was hoping for.  But when I asked him how long the scar would be, he said 8 inches; whereas the scar for the real minimally-invasive surgery is only 1 inch.  I asked him how long I would be in the hospital and he said, oh, five to seven days or so. Whereas the real minimally-invasive version only required an hour or two in recovery!  So it paid for me to realize that I was dealing with a surgical scoundrel, probably a well-intentioned one, but a scoundrel anyway...at a very major medical center, no less.  I know its hard to question our doctors, not to mention our surgeons, but it is our very health and often longevity that is at stake.

 

If an experienced, successful Nissen surgeon doesn't want to take your case on, then you know for an absolute fact that it's a bad idea!  Also if they are not acutely aware of scleroderma, and potential complications, that would be another poor indicator.

 

Some things just simply are out of the ballpark for us. There are certainly some complications that make us bad candidates for various surgeries and treatments.  But sometimes we never know for certain until we push the issue to the max, and then live with whatever the results are. But at least we have the personal satisfaction of knowing that we did indeed push it to the max.  It's not our fault when we run into brick walls but we can regret not even trying.

 

Anyway, the Nissen is the only avenue forward that I'm aware of, that would improve your possible lung transplant odds, down the road.

 

:emoticons-group-hug:


Warm Hugs,

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

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#16 miocean

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Posted 22 April 2014 - 04:20 AM

Thanks, Shelley!

 

miocean


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