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Apr 5, 2012 · Am feeling really bummed these past few weeks and finrud myself not in Just Want to Talk

I wish I had something wonderful and profound to say to you that would help you feel better, but nothing I think of sounds anything but trite. So I not going to say any of those things, but I do want to say that I will be praying for you. That God wil give you relief and encourage your heart and spirit. Blessings to you and your husband.

Apr 5, 2012 · Polycystic Liver and Kidney Disease in Kidney & Bladder

May I ask how you have handled your inability to eat? I’ve been on a liquid diet for the last four months now and my GI doctors don’t know what to do to make things better. I’m hopeful that the doctors at Mayo will have more options/suggestions.

Apr 5, 2012 · Polycystic Liver and Kidney Disease in Kidney & Bladder

Wow. I really do have a lot to learn. May I be nosy for a minute? If I’m being to personal, please just say so, no offense will be taken. I’m just trying to learn as much as I can about the patient side of this disease. So you do have PKD, but do you also have PLD? I’m having a difficult time finding much information about PLD. I guess PLD is quite unusual. On another note… so your kidney transplant was five years ago, have things gone well for you since then. I’ve been told that I might need to have both a liver and kidney transplant at the same time because of the complications from the post-transplant medications have one the kidneys. So much to take in. Transplant wasn’t even in my vocabulary three weeks ago.

Apr 4, 2012 · What Mayo Clinic location should I go to? in Heart & Blood Health

I would have to agree with you on this one. I’m also from Austin and have had a very difficult time getting help in Austin. Getting a diagnosis of the root cause of my issues took over three months. I certainly agree with the black hole concept.

Apr 4, 2012 · Polycystic Liver and Kidney Disease in Kidney & Bladder

Do you mind my asking what you mean by “had my native kidneys removed 1.5 years later?” Did they not take out “your” kidneys when you had your transplant in 2007? Pardon me for my ignorance, but I’m new to the liver / kidney transplant scene and I’m still learning.

Apr 4, 2012 · Liver Transplant in Transplants

Congrats!!! As someone newly diagnosed with the need for a transplant, I look forward to the day that I’ll have my one year anniversary, too. Blessings to you.

Apr 2, 2012 · Polycystic Liver and Kidney Disease in Kidney & Bladder

Are you doing liver or kidney dialysis?

Apr 2, 2012 · Polycystic Liver and Kidney Disease in Kidney & Bladder

I’m glad that you are listed. I have started the process for evaluation for transplant (TX). From what I understand, there are very few people who ever “need” a transplant for PLD, since “livers never fail.” Four months ago, I went in for day surgery, but didn’t leave for six days due to complications (including severe liquid retention.) The water retention began to fill the small cysts in my liver. I didn’t even know I had cyst in my liver. I have yet to “eat” a meal since the surgery. It was finally discovered just a few weeks ago that the reason I couldn’t eat was because my liver had crushed my stomach. All along the doctors thought my lack of desire for food was due to medication. Do you mind if I ask, where you are seeking treatment? Are you at Mayo? The local transplant center here don’t seem to have seen this before, so I’m trying to decide if I need a second opinion. Here is’s all about “end-stage liver disease.” Since my issue isn’t end-stage, they had a difficult time even deciding if this was the best option. If this is the right decision, then is TX the right location?