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Lung Transplant


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#1 dawn7855

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Posted 25 August 2013 - 08:34 PM

Hi All,

 

My name is Dawn, and my man's name is Butch.

 

I'm glad to be able to type this.  I would like to get as much input from you'll as possible!  I am at my End Stage looking at a double lung transplant.  I would appreciate ANY first hand knowledge.  My husband would Like some feed back for caregiving. We are not too fragile to hear the truth about things. 

 

Thanks in advance for any help you can give!  Peace!



#2 Shelley Ensz

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Posted 26 August 2013 - 11:46 AM

Hi Dawn,

 

Welcome to Sclero Forums!  I'm sorry you have end stage lung disease and send my best wishes to you and your husband.

 

My husband had a single lung transplant over 3 years ago.  As you probably know, a double lung transplant is better, but my husband was well over 60 and so he was very happy to get any lung at all (many centers don't do lung transplants for people over the age of 60). It was quite an ordeal but it was also a huge joy for him to be off oxygen as he was on oxygen all the time for many years before that.  Anyway, because of that, and because Miocean is undergoing evaluation for a lung transplant now, you will find many discussions on our forums about it.  Use the search bar in the upper right hand corner of every forums page to help locate those.

 

Have you begun evaluation yet?  There is a lot involved in just finding a good transplant center and then getting accepted by them. My husband has another illness, Alpha-1 Antitrypsin Deficiency, so Miocean's posts that also entail scleroderma may be helpful to you regarding qualification issues pertinent to scleroderma patients.

 

Anyway, I'm glad you found us!  Say hi to your husband for us.  Also, he may be particularly interested in Michael Thorpe's blogs here in the forums.

 

: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.

#3 Joelf

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Posted 26 August 2013 - 12:31 PM

Hi Dawn,

 

Welcome to these forums!

 

I'm sorry to hear that you have end stage lung disease and although I'm unable to give you any first hand advice, as Shelley could, I've included a link to our page on Lung Transplants which I hope you'll find helpful and informative.

 

Please do keep posting and let us know how you and your husband are faring.

 

Kind regards,


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#4 miocean

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Posted 26 August 2013 - 06:44 PM

Hi Dawn,

Welcome to the forums...I, too, am seeking a lung transplant and am currently going through extensive testing. I have not been approved at a center yet.

I had a kidney transplant 3 1/2 years ago and am familiar with the rigorous testing/appointments necessary as I listed at 3 centers. I am complicated for a lung transplant because of the kidney and complications of scleroderma, especially damage to my esophagus.

 

Although I am not at end stage lung disease the fibrosis in my lungs is increasing and is also showing honeycombing as well as ground glass. I have also been diagnosed with pulmonary hypertension via right heart catherization. I use oxygen upon exertion and am going to pulmonary rehabilitation. Because of my age, I am seeing if I will be considered now, as my age may make me ineligible soon.

 

I was turned down at the first center I applied to for lungs due to damage to my esophagus shown in a barium swallow. The 2nd center is willing to test me further before making a decision. I have met with the transplant program, had a quantitative perfusion lung scan, carotid artery sonogram, stress echo with bubble, 6 minute walk test, and a meeting with the pulmonary hypertension specialist. This week I have a left and right heart catherization to validate the diagnosis of PH and check my heart. I have met with my GI doctor and am trying to get a gastric emptying and 24 hour ph esophagus test scheduled, which is turning out to be more difficult that it should be. 

 

If I am turned down at this center there is another that does higher risk transplants but it is very far away and we would have to relocate for a while. I am hoping that the fibrosis in my lungs does not increase and they get to the bottom of my shortness of breath and get me on the right medications or that there are procedures I can go through to correct some of the things that are wrong. The problem is some of the tests and the transplant itself could damage my kidney. For the heart catherizations I will need extra hours of hydration to protect me from the dye.

 

As far as caregiving, the best advice I can give is to try and make others understand that Butch has a life, too. For 9 years my husband has been having people ask him how I am, but they forget that he is going through this as well. It is important for him to maintain his friendships and the activities he enjoys as much as he can. I have been very fortunate to have my husband right by my side but have been capable of managing the details (planning, finances, appointments, etc.) on my own. I am now encouraging him to become more involved in these areas in case there comes a time when I can't manage it as well. I also try to do things I know he enjoys even thought there are times it is hard for me. He has given up so much for me, I can make the extra effort for him.

 

I hope you will share more as to where you are in the transplant progress. I wish you both the best.

 

miocean 


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#5 Amanda Thorpe

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Posted 28 August 2013 - 02:09 AM

Hello Dawn

 

Welcome to the forums! Needing a transplant is massive but here you will find other in the same boat and those who have been able to climb out.

 

Roam around the forums and keep posting!

 

Take care.


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#6 Sweet

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Posted 28 August 2013 - 03:37 PM

Hi Dawn,

 

Welcome to Sclero Forums!  I'm sorry you have end stage lung disease and send my best wishes to you and your husband. Let me pass to you a great big hug!  :emoticon-hug:


Warm and gentle hugs,

Pamela
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#7 Shelley Ensz

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Posted 10 September 2013 - 06:32 AM

Hi Dawn,

 

Have you begun evaluation for a lung transplant yet, or found a center that will review you for one? Please keep us posted on how you are doing.

 

I am thinking of you, and sending best wishes your way.

 

: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.