Jump to content


Congrats to Margaret, Platinum Member with 1,000 posts and 10 Years of Forums Membership!


Photo

Lung Transplant Evaluation Take 2


  • Please log in to reply
10 replies to this topic

#1 miocean

miocean

    Senior Gold Member

  • Members
  • PipPipPipPipPipPipPipPip
  • 925 posts
  • Location:NJ

Posted 09 July 2013 - 04:23 PM

Yesterday I visited a second center for evaluation for a lung transplant. Imagine this:

 

They ran on schedule!! :emoticons-line-dance:

 

I spent over an hour with the nurse coordinator going over my medical history. I was able to pull out the tests and labs that hadn't already been forwarded to her thanks to my handy-dandy binder system. She felt that even with the complications of the kidney transplant, scleroderma, pulmonary hypertension, and the damage to my esophagus the transplant doctor would still want to talk with me. The doctor spent  a good amount of time with my husband and me and started by saying he wasn't going to tell me too much about transplant because I knew all about one from my kidney. He focused on the health issues that I am currently experiencing and what to do to figure out what exactly is going on and how to correct them, if possible. His feeling is that whether I am transplanted or not, there may be things that can be done to increase the quality of my life. He expressed concern that the anti-rejection drugs for the lung could be toxic to my kidney but is planning on calling my nephrologist to discuss it. My BMI is also too high for them (it was fine for the first center but all have different criteria).

 

They drew 20 vials of blood for the most extensive labs I have ever had. I will then be scheduled for all kinds of tests including and right and left heart catherization, endoscopy, colonoscopy, stress test, exercise echo, further testing on my esophagus, another CT scan because the one I had recently didn't have enough images (?), meetings with a psychologist, social worker, neurologist, etc. He is also getting me a Pulmonary Hypertension Specialist, which I needed anyway. There are a few reports from doctors and my dentist that I need to have faxed to them. After all of this, a team will determine treatment options and if I am a candidate. All be done in the next couple of months so it will be busy.

 

Wow! Can you imagine my amazement! Instead of blowing me off as not a candidate he seemed to be genuinely concerned about giving me the best possible outcome. And...everything will be done at the same center. All of my doctors in the same place! 

Am I dreaming?!?

 

My first impression was extremely positive but I am yet to pass judgement since I am the one that everything seems to get mixed up and frustrating for. At the least, I am getting more than there's nothing we can do, I'm sorry, get a wedge pillow...

 

I'll keep you posted.

 

miocean

 

 


ISN Artist

#2 Shelley Ensz

Shelley Ensz

    Root Administrator

  • ISN Root Admin
  • PipPipPipPipPipPipPipPipPipPipPipPip
  • 3,276 posts
  • Location:Minnesota

Posted 09 July 2013 - 06:58 PM

Hi Miocean,

 

I am glad it sounds like you are finally getting serious consideration for a lung transplant.

 

It's no joke about the anti-rejection meds for the lung transplant to be toxic for the kidneys. They told us Gene could pretty much count on needing to have a kidney transplant down the road, because of medication side effects. About 1/3 of lung transplant recipients end up on dialysis. The flip side of that, though, is that some of the meds you are on for the kidney transplant will do double-duty for the lung transplant, and vice versa.

 

Since everyone getting a lung transplant is at high risk of kidney failure, I rather doubt that they would be able to hold a kidney transplant against you. In their unique way of thinking, a kidney transplant is nothing more than an expected side effect of a lung transplant.  So they are still more likely to raise a ruckus over heartburn/esophagus/stomach issues.

 

Did you have to go through the psychological, social worker, and family stuff for the kidney transplant? It's a big emphasis for lung transplants because there are worse outcomes with depression and lack of family support.  So they take a serious look at not only the patient but also the caregiver and the family relationships, to make sure they are sturdy enough to handle the stress and caregiving it requires. Since you already have a proven track record of surviving the kidney transplant stress, that should be a shoe-in for you!

 

And let's not forget the infamous Wallet Biopsy to make sure that all the medical bills, and thousands of dollars a month for medication, are provided for.

 

: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.

#3 Joelf

Joelf

    Star Ruby Member

  • ISN Root Admin
  • PipPipPipPipPipPipPipPipPipPipPipPipPip
  • 4,616 posts
  • Location:West Sussex

Posted 10 July 2013 - 04:58 AM

Hi Miocean,

 

Oh I'm so pleased that the evaluation sounds so positive for you! :emoticons-clap:

 

Although I realise that you do have a way to go yet, it's very encouraging that they actually seem to want to help you and improve your quality of life. I've absolutely everything (fingers, toes etc.) crossed for you and I do hope that things continue to progress in the same positive manner! :emoticons-yes:

 

Best wishes,


Jo Frowde
ISN Assistant Webmaster

SD World Webmaster
ISN Sclero Forums Manager
ISN News Manager

ISN Hotline Support Specialist
ISN Chat Host
International Scleroderma Network (ISN)


#4 miocean

miocean

    Senior Gold Member

  • Topic Starter
  • Members
  • PipPipPipPipPipPipPipPip
  • 925 posts
  • Location:NJ

Posted 10 July 2013 - 05:23 AM

Shelley,

 

I went through all of this before at the 3 centers I applied to for the kidney, all to varying degrees. The most intensive one was a center that required us to come for 10 days of testing, classes, and counseling. The other two were much less demanding. I learned the most from the 10 day evaluation/training even though I ended up not getting transplanted there.

 

So I am looking at this as a learning experience.

 

miocean


ISN Artist

#5 Shelley Ensz

Shelley Ensz

    Root Administrator

  • ISN Root Admin
  • PipPipPipPipPipPipPipPipPipPipPipPip
  • 3,276 posts
  • Location:Minnesota

Posted 10 July 2013 - 07:50 AM

Hi Miocean,

 

That's great because then you are not going to be in the least bit surprised by anything in the lung transplant screening.  I can't think of better prep for a transplant than having already had one!! :emoticons-yes:

 

: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.

#6 Buttons

Buttons

    Senior Silver Member

  • Members
  • PipPipPipPipPipPip
  • 610 posts
  • Location:UK

Posted 12 July 2013 - 11:38 AM

Glad to hear that you have had such a positive outcome at this first meeting at this centre, hope it continues this way for you.

 

Buttons



#7 miocean

miocean

    Senior Gold Member

  • Topic Starter
  • Members
  • PipPipPipPipPipPipPipPip
  • 925 posts
  • Location:NJ

Posted 26 September 2013 - 04:41 AM

:bye: Hi all, I want to update you on everything that has happened to date:  :bye:

 

I have had heart and lung testing at the center and so far I have only minor issues other than the fibrosis and pulmonary hypertension. My heart is good, I have no blockages. The left side of my heart is slightly enlarged, probably due to the years on dialysis and I have some minor stenosis. The pressure between my heart and my lungs is back in the normal range, probably due to the medication I started for pulmonary hypertension. I am to continue with oxygen as needed, pulmonary rehab, and the medication. I am about to start the GI testing with a gastric emptying study tomorrow, next week I am meeting with a new gastroenterologist for a 24 hour PH esophagus monitoring test and will be scheduling an endoscopy and colonoscopy at the center in the near future. I also have an appointment with my cardiologist but the center has said my tests show only minor issues. My scleroderma specialist and nephrologist concur.

 

Although the GI testing is not that pleasant I am actually looking forward to them as I feel I may finally get answers to things that have been problems for years. The GI doctor I have been going to for 20 years with no resolution of my issues does not do the PH esophagus monitoring test so I have an appointment with a new doctor who just happens to specialize in Celiac disease and women's digestive issues. Could be a better fit for me and maybe some issues will be resolve. 

 

Pulmonary rehabilitation is going well. I like the group I'm in and am learning things that are aiding me in increasing my activity level. In 8 sessions I have already increased my endurance and strength, although no great athlete by any means. Baby steps.

 

I took a break with a great trip to Niagara Falls (see I am happy today because... in the Fun and Friendship Forum but there are no medically free days for me right now.  :VeryHappy:  I saw my scleroderma specialist and she told me that even if the center qualifies me for a transplant I am not sick enough to get one. Odd how you have to be sick enough and healthy enough at the same time...

 

Off to pulmonary rehab and the dentist, I'll keep you posted.

 

miocean


ISN Artist

#8 Joelf

Joelf

    Star Ruby Member

  • ISN Root Admin
  • PipPipPipPipPipPipPipPipPipPipPipPipPip
  • 4,616 posts
  • Location:West Sussex

Posted 26 September 2013 - 06:37 AM

Hi Miocean,

 

I'm so glad that it does sound as if overall you've had good news... :bravo: ....and although obviously it would be better if you didn't have to undergo GI testing, at least it may solve some issues for you, which is always a bonus, and it all helps to improve your quality of life. I'm so pleased that your pulmonary rehabilitation is going so well and long may that continue! :)

 

Do keep us posted on your next appointments!

 

Kind regards,


Jo Frowde
ISN Assistant Webmaster

SD World Webmaster
ISN Sclero Forums Manager
ISN News Manager

ISN Hotline Support Specialist
ISN Chat Host
International Scleroderma Network (ISN)


#9 Shelley Ensz

Shelley Ensz

    Root Administrator

  • ISN Root Admin
  • PipPipPipPipPipPipPipPipPipPipPipPip
  • 3,276 posts
  • Location:Minnesota

Posted 26 September 2013 - 10:57 AM

Hi Miocean,

 

Thank you for the update on your lung transplant evaluation.  I am delighted that you have passed all the important tests, so far. I don't know how it will be for you, but Gene was thrilled when they stopped his evaluation and said that he had to have a successful Nissen fundoplication in order to be listed.  As you know, the Nissen surgery put an absolute end to his chronic and severe heartburn, which until that time doctors had treated but basically ignored, even though he had had severe esophageal ulcers and his throat stretched many times.  Can you imagine, all those issues were resolved and he hasn't once had heartburn since? 

 

It was still another six or seven years before he actually had his lung transplant. So sometimes these things don't happen overnight. But by having all the tests done, you are at least attempting to put yourself in the running.  I know how hard it is to keep the faith and to keep on having one test after another, with no guarantee at all of eventual success. Maybe it will all be worth it, just for consulting a new GI.

 

: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.

#10 judyt

judyt

    Gold Member

  • ISN Support Specialists
  • PipPipPipPipPipPip
  • 641 posts
  • Location:Auckland, New Zealand

Posted 26 September 2013 - 11:28 PM

Hello mio,

 

Have been wondering how things are going for you so it is good to hear that your have had some good results, particularly with your cardiac health.   

 

After I had my mitral stenosis repaired 3 years ago I was told that my coronary arteries were better looking than most people of my age.  Now you know how good that feels.

 

Keep up the good work.

 

Judyt



#11 Sweet

Sweet

    Platinum Member

  • ISN Support Specialists
  • PipPipPipPipPipPipPipPipPipPipPip
  • 2,893 posts

Posted 30 September 2013 - 12:20 PM

Hi,

I've been thinking about you, I was happy to come online, and find updated information, and positive info at that! 


Warm and gentle hugs,

Pamela
ISN Support Specialist
International Scleroderma Network (ISN)