My husband has PLD (polycystic liver disease) with an extremely enlarged liver

Hello, in the past few months I've had an apt with my hepatologyst and blood work was great and I was feeling good (granted the cyst and expanded belly). However going on 2 weeks ago, I've encountered a flu, my son brought home and I'm still fighting this cold while my family is well over it.
Is this normal? I will also add, I'm so tired.

I would at least call/ if not go to the doc to make sure you don’t have an infection. Those can be deadly in our situation if not found quickly and treated aggressively. God bless your health.

It could be ascities(sp?). Where fluid fills up the abdomen. I has mine drained and it was about 10+ liters and 20+ lbs. my dr put me on two diff water pills and problem solved.

when you had your drain procedure, was it only a drain or was it a drain plus cauterizing the location of the cyst? How long did it take in your experience to have that fill back up with fluid?

@lmarcellus Hello and welcome to Connect. I have PKD and PLD and had living donor kidney transplant with bilateral nephrectomy 12/07/20 at Mayo Rochester. You are already in the best place for PLD that I have heard of. They have specialists that deal with PLD. As you know, if you have PKD it is common to get cysts in other locations such as the liver, pancreas and in other locations. Sharing this for those that aren’t aware. Typically, PLD patients only need transplants due to size due to displaced organs, inability to eat and pain, but likely the histoplasmosis infected his liver and is causing failure and/or ascities. I would absolutely trust your Mayo doctors if they are saying he needs a transplant, because they rarely recommend one just because of PLD. The histoplasmosis in his liver could also affect your husband’s new kidney, so I am sure they are eager to get it treated. I participate in several PKD and PLD FB communities, if you are on FB you might do a search for PLD. Mayo Rochester is where everyone would love to go for PLD in the US. Just know your husband is in the best hands. People can donate a lobe of their liver safely and it is supposed to grow back for the donor. I am sure they are recommending a living donation as it might be the fastest way to get him a new liver. I am not a Dr., just someone who has lived with PKD/PLD. They will work as a team to manage your husband’s post kidney transplant status in addition to the liver transplant. Please let us know how he is doing. Are you at Mayo Rochester?

@iowachica, I'm sorry to read that you caught the flu. I hope that you are feeling better. I don't recall whether you are waiting for, or have already received your transplant.
From my experience, it is normal for me to take longer to get over anything like a cold, or bruise, or cut than my family or my pretransplant self. I also find that infection is a big concern and my local PCP told me in my early post transplant years to contact him anytime, and he even saw me without an appointment.! I also get tired more easily since my transplant.

Did you contact your doctor or transplant team? How are you feeling now?

Hello Rosemary- So happy to read your message. I'm post transplant and now feeling better. It appears after getting over the first flu my second child brought home another virus and put me out for another week. It was brutal.
My Hep Doc did say, before getting sick...if my condition worsened just call him and make sure to see him.