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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Spouse of PKD

Hello All,


A few months ago, my family found out that my husband has PKD. A little of his back story: He had kidney cancer as a child and lost one kidney as a result. The cancer, called Wilms Tumor, affects about 5% of our nation's children. I believe the nephrologist said that about 1 in 2000 people have ADPKD. But he then said that for my husband to have both in his lifetime is damn near unheard of (you could even put a rough estimate of 1 in 500,000 people having both in their lifetime). You would think since both diseases affect the kidneys that they could be related somehow, but the doctor said they are separate entirely. So trying to bring you back up to current times...


My husband has PKD, and he only has one kidney. His creatinine level was 2.5 when last checked. The doctor said that with two kidneys, someone could possibly live for a very long time without having to go into dialysis or having a transplant. But with him only having one kidney, my husband has been given the rough estimate of 5-10 years for complete kidney failure. He has to go in every three months for a year to a year and a half to have his blood checked and then have an appointment to see where he stands. Our first official appointment is at the end of May. If his creatinine levels rise faster, he is closer to 5 years, if slower then closer to 10 years.


I've read that many people who are put on a transplant list wait at least two years for a kidney, if not more. My husband has not been put on a list yet. I will be asking about that in May. My concern is that if he isn't on the list yet, and his time seems more like 5 years, will he get a transplant in time?


I guess I'm not totally sure why I'm writing here.. an outlet maybe.. I will eventually be going through and checking out other people's stories...


If anyone has any advice for the spouse of someone with PKD, any advice in anything is welcome. I'd love to know what kind of questions to ask the doctor when we go in May. I want to have a list ready. He said he would sit down with us and answer absolutely any questions we had. But I am not entirely sure what to ask. I have a couple in mind, but I'm sure there are things I haven't even thought of.


Thanks for listening.

Replies

sbrewer
sbrewer

I don't know how to edit my post, but I wanted to add that his scans showed he has many more than 50 cysts on his kidney, and it is functioning at less than 50%. He found out about 8 years ago that he had CKD, and recently at 33 years old, he is diagnosed with the PKD. We have a toddler who will be 2 soon, and another on the way who is due in the fall. Just wanted to give you a bit more information on us.
lovemyfive
lovemyfive

Hello and welcome!
I am not the spouse-I have PKD.
Accepting this diagnosis takes time. It is helpful to realize that your husband will go through the stages of grieving whether he is aware of it or not. I found research very helpful.
One thing that is important to understand is that your husband was born with PKD. He didn't recently get it. His problems and childhood may already have been a result of this.
There isn't much modern medicine can do for PKD. However it is important to maintain a healthy lifestyle. Drinking lots of water, controlling blood pressure are very important. Avoiding stress is helpful as this is very counterproductive.
As far as your children go, each child has a 50% chance of inheriting this gene. There isn't anything to do for the ones you have at this point except maintaining a healthy lifestyle. It may be many years before they could discover they have inherited this or not.
It is unfortunate that your husband has only one kidney. PKD seems to be different for everybody. There are some people with small kidneys and few cysts who have a lot of pain and low function. There are others like myself with enormous kidneys (20 cm). and hundreds of cysts likely and good function. My largest cyst 10 cm diameter.
Your question as to the time involved to receive a donor kidney is a great one to ask your doc. You could ask him about your blood pressure as well ....
Wishing you well.
Hanna
sbrewer
sbrewer

Thanks for the feedback! I should have added his kidney is 18cm. The neph. said that when he is seeking my husband's medical records as a child because they should have run tests on the kidney that was removed. They could have been able to tell when he was 5 years old if he had it or not. My husband was having issues with blood pressure. I think that and the fact he only has one kidney is what made the doctors check more stuff out. He is on medicine for his hypertension. My doctors will be keeping an eye my growing baby, and I will be informing my son's pediatrician at his 2 year check up.
Now it is just a waiting game I suppose. Thank you so much for responding!
ToughGirl
ToughGirl

Your husband has certainly been double hit. There is no certain time range for kidneys failing. My sister's kidney function takes big drops at a time every few years. Myself, my kidney function decreases only slightly every year. Take each step as it comes. First kidney function reduces to a point that he will be eligible to be put on the transplant list if he qualifies. Most states it is around 15% function. I was put on the transplant list at this time. A live kidney donor is his best option. It has been 2.5 years for me still waiting, recently I went on dialysis. I do have more energy but going to dialysis is time consuming. In my state it is 2-6 years for a kidney transplant. Learn all you can but try not to be too overwhelmed or consumed, you are his best defense along with being part of a loving family. My husband is my rock and being there for my children and grandchildren keeps me going.
Chewitt
Chewitt

Hi sbrewer,
Welcome to the group. We've had a few spouses on here over the years (I've been here for a long time!) and hopefully you will find some useful support. I won't repeat what others have said but will try to address your question about what a spouse of someone with PKD should do. First of all, be aware that a chronic illness can put a big strain on relationships, but forewarned is forearmed. You both need to develop patience and tolerance and be forgiving of each other if things are difficult at times. It's also important as the spouse to have some time to yourself when you can forget about these worries for a while. You will be a great support to your husband, but you need support, too. Keep your fiends and family close.

As for the progression of the disease, it really is extremely difficult to say how things will go. I was diagnosed ten years ago and was told by one doctor that I would have 5-10 years until end stage renal disease. Others refused to guess. My function is now 22% and I still don't know whether I have 1, 2 or 3 years before I will need treatment. I can't comment on how long the wait for a kidney is where you are (I'm in the UK) but I was told it depends on tissue type etc, not just time on the list. You could pursue the living donor option which if successful would reduce waiting time. You could also ask about the drug Tolvaptan, which can slow the progression of the disease. Keep sodium intake low, avoid caffeine, take regular exercise, and drink plenty of water are the other main pieces of advice. Finally, try not to let this disease dominate your lives. Enjoy life as a young family as much as you can. Avoid trying to anticipate every twist and turn of the journey and avoid imagining all the worst case scenarios. You will drag your lives down with worrying about things, many of which will never happen or just won't be as bad as you thought.

Good luck,

Chewitt
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