Polycystic Kidney Disease (PKD) Support Group

Polycystic kidney disease (PKD) is a progressive, genetic disorder of the kidneys. It occurs in humans and other organisms. PKD is characterised by the presence of multiple cysts (polycystic) in both kidneys. The disease can also damage the liver, pancreas and rarely the heart and brain.

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Combined liver and kidney transplant

Hi guys


I am the first in my family with APKD and won the jackpot because my liver is enormous as well. Before pregnancy I had a normal figure but after giving birth my liver started to explode. Now it is 6 times as big as it should be and really impares quality of life. My son is eleven years old now and we just found out that he has hypertension :(


I have decided that I will opt for a combined liver and kidney transplant in Belgium (I live in the Netherlands). Is there anyone here who has survived this?


regards


Nicky

Replies

Chewitt
Chewitt

Hi Nicky,
I'm in the same position as you, though my sons are a little older than yours. I know that people have survived this, but the dual transplant is still a very daunting prospect. I'm sorry that your son has hypertension, but at least by finding it early it can be managed before causing problems. He should avoid the massive liver problem because it tends to be women who suffer this owing to the oestrogen link.

What sort of timescale are you looking at? My kidney function is now at 22% so the conversations about treatment are just starting.
nicky73
nicky73

Hi Chewitt
Thanx for your reply! My eGFR is around 40 at the moment and when it reaches 30 I will be on the waiting list in Belgium. In Belgium everybody is organdonor unless you actively object so the waitinglist there is much shorter than in the Netherlands and there is more experience in transplanting livers for quality of life issues. In the Netherlands they rarely do a double transplantation. They tend to do the liver first and after a few months the kidney. But I am a doctor myself and feel more save in the hands of a surgeon who has experienxe in removing these extremely large livers. I think mine weights around 8 kg at the moment.
Furthermore, from a immunological point of view it is better to have the organs of one donor in stead of two.
At the moment I still work fulltime but it is getting harder because lack of energy. Do you still work?
I try to stay as fit as possible and what works for my is cardiotraining. I have to do it in the morning before taking bloodpressure medication otherwise my heartrate won't go higher than 110 b/m.
So for me I think it'll take a year before surgery will take place. One other issue is that I just found out that I have an unknown bloodplatelet disorder as well. Talking about bad genes
Chewitt
Chewitt

Hi Nicky,
I could have pursued the transplant option earlier but decided not to in view of the fact that my sons were still young. My hand is forced now with deteriorating kidney function and in any case, my activity levels are significantly curtailed by my enormous organs. I'm extremely uncomfortable most of the time and experience a lot of pain. Hauling this weight around is restricting and exhausting. I have been anaemic for some time now and the iron pills don't seem to do much for me. I'm also taking folate for a deficiency which was recently detected. My white blood cell and platelet count are always low and dip in and out of the normal range. I still walk my dogs (increasingly slowly) but that wears me out and I don't do much else. I can just about keep the house in order but I don't work outside the home.

How long do you think you will wait for a transplant after being listed? We still have the opt in system here and the wait can be several years.
nicky73
nicky73

Hi Chewitt
Wow, you are definetely more disabled than me. I feel uncomfotable most of the time, always in pain, problems with eating and sleeping because of the enormous organs but I can still work and be quite active although it gets harder. I notice that it is uncomfortable to stand for long times. Next week I will go on holidays with my son to New York. I am wondering how it will turn out energy wise.
I don't have anemia yet, the nephrologist told me that the renal cysts produce a kind of EPO so it takes longer for anemia to develop compared to other renal diseases. But I have to live extremely disciplined to manage things. I am a single mother and must confess that it is mentally hard to handle. Today the pediatrician called me and proposed to make an appointment for my son to test if he has inherited my plateletdisease as well but I decided not to do it at this moment.
So only three days work left and than on holidays, I try to enjoy life as much as possible while I still can. Regards Nicky
Chewitt
Chewitt

Facing all of this when you're on your own with your son must be very difficult. Do you have friends and family to support you through the years to come?

I do tire easily and have found pacing essential in trying to avoid the all or nothing situations. You're right to enjoy life while you can.

We decided not to test our sons for anything while they were very young. Our eldest (19) has some symptoms but refuses to be tested and just assumes he has the disease. It doesn't make him look after himself any better though!

Happy holidays - looking forward to hearing how things went when you return.

Chewitt
nicky73
nicky73

Hi Chewitt
I decided not to test him but to buy a bloodpressure monitor and measure my son at home. Unfortunately it was too high. And because hypertension damages eyes/kidneys/heart I made an appointment at the nephrologist. The only thing they do is monitor his bloodpressure and regulate his hypertension. When I was 17 years old I had a tonsillectomy and in the hospital my blood pressure was way too high. So in my son's case I hope that keeping his bloodpressure low will preserve his kidney function.
I have friends but my family lives in another part of the Netherlands. My doctor in Belgium says that if all goes well the recovery period after transplant is 3-6 months.
It is hard to imagine how life will be after transplant. I have an uncle with a liver transplantation because of another liverdisease and he is doing great ( transplant is 9 yrs ago).
My fear is developing skincancer or oral cavity cancer. I work as an oncologist and see quite a lot of transplantpatients with cancer. But I realise that I don't see all the other transplantpatients who are doing fine.
Regards Nicky
Chewitt
Chewitt

We have to live with hope; it's too hard otherwise. Your uncle is a good news story, and we like those! I have thought about the risk of cancer following transplant, but again, I guess we just have to live in hope.
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