Lung Transplant Question

[CLH0301]

Hello all, I am new to this online forum thing and I am just looking for help and support. I have had Polycystic Kidney Disease (PKD) since being diagnosed with it at the age of 13. I am now 48 years old.

I have been in and out of the hospital for multiple lung problems and lung infections/diseases. I have been recently told that I need to get a lung transplant.

I just want to know if there is anyone out there that has had PKD and gotten a double lung transplant or if it is possible for someone who has PKD to receive a double lung transplant. I would also like to know why a doctor would deny me a lung transplant when telling me that my PKD would not affect the lung transplant at all. I would also like to note that I am not having any issues with my PKD and haven't had any my entire life. If there is anyone out there who can point me in the right direction, it would be greatly appreciated. I am not above traveling out-of-state. I live in North Carolina.

Thank you all in advance for your help and support.

[freefaller]

Hello, Welcome to the forum. I am sorry I can't answer your questions. All I can think of is for you to consult with a Kidney specialist, one who also has a special interest in PKD and ask them if there is any reason that this would affect a lung transplant. As you live in the US I am not sure about how you would find the right consultant but I know there is a website there that can help you. It may be called webmd I seem to remember that mentioned on another health website I belonged to or it could be websire. I will try and find out for you and get back to you on that. Then get your self to a specialist lung consultant and see what they say once you have the information from the kidney specialist. It would help if the kidney consultant could advise you on the other specialist to see - or vice versa depending on who you see first. It seems to me that you have had one specialist say one thing and one say the opposite - am I right? Do you have a good teaching hospital near you? This may be a good place to start looking for help.

Not sure if I have been any help here but hope I will be able to at least find out where you can get information on the specialists when I ask on the other website.

Do hope you can get this sorted out it is so confusing in this lonely place where we are when trying to find the right information and only find contradictions.

Sending love and hugs to you over there in Carolina.

Sian

[Samcar]

Ok I'm confused. Did the doctor say you need a transplant but cannot have it because of PKD? Did you ask the reasoning behind this? Is your insurance company making this decision? Is it the governing board over transplants saying no? Do you have pulmonolgists? How about nephrologist to back k you about kidneys not being an issue.

I have lung disease too. I love my doctors in Boston Massachusetts. I see several doctors at brigham&women's hospital and Beth Israel hospital. I would try to speak with a transplant doctor(a consult & second opinion). Get answers to your questions and demand proper care. In the United States you are entitled to good medical care.

Keep me posted. Prayers & thoughts for getting better.

Carol Ann

[MarieW-F]

I am in the UK so it may be different over here. Have you been told you can't have a transplant because you have PKD? Or are you concerned that this may influence the decision?

Over here you need to be fully assessed to get on the transplant list. The team will take into account every aspect of your health (which will include other known issues) before a decision is made to put you on the list. If you are in anyway concerned you need to speak to your lung specialist and get advice from him.

I hope this helps

marie x