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.
Hi, Im so happy to have found this website. I'm going to apologize now for the extra long post. I am the wife of a PKD patient. He was diagnosed with PKD at age 26 by age 34 he was in ESRD at 9% function. He immediately went on peritoneal dialysis and fortunately 3 wks later recieved a transplant from his brother. We are coming up on his 5th year, and both him and his brother are doing great.
Unfortunately we have been trying to concieve unsuccessfully for 3yrs now. We have been refered to a fertility clinic and will be starting IVF treatments in the next couple of months. I've been searching high and low for information on couples like us and have not found much. Just hoping someone might have gone through what we are now. My husband has been diagnosed with low sperm volume, count, and motility. I have PCOS, ovulatory dysfuntion and endometriosis. We have been told IVF is our only chance at concieving a child of our own. We are also considering having PGD (Preimplantation Genetic Diagnosis). This is to test the embryos for PKD to prevent implanting embryos that have the disease.
I have found a few articles on the internet to be helpful. I have found that there is a link to male infertility with PKD due to uremia and abnormal polycystins. I also found one from 1995 about our same situation where patients had IVF and the eggs never fertilized, and the researchers said it was because the sperm from the PKD male was abnormal. My questions are...
Is there anyone else that has gone through this?
Did you have successful IVF?
Did you have PGD?
Did the eggs fertilize?
Did you have a successful pregnancy?
Again, I'm so glad to have found this website and thanks to anyone that can provide information and support.
Unfortunately we have been trying to concieve unsuccessfully for 3yrs now. We have been refered to a fertility clinic and will be starting IVF treatments in the next couple of months. I've been searching high and low for information on couples like us and have not found much. Just hoping someone might have gone through what we are now. My husband has been diagnosed with low sperm volume, count, and motility. I have PCOS, ovulatory dysfuntion and endometriosis. We have been told IVF is our only chance at concieving a child of our own. We are also considering having PGD (Preimplantation Genetic Diagnosis). This is to test the embryos for PKD to prevent implanting embryos that have the disease.
I have found a few articles on the internet to be helpful. I have found that there is a link to male infertility with PKD due to uremia and abnormal polycystins. I also found one from 1995 about our same situation where patients had IVF and the eggs never fertilized, and the researchers said it was because the sperm from the PKD male was abnormal. My questions are...
Is there anyone else that has gone through this?
Did you have successful IVF?
Did you have PGD?
Did the eggs fertilize?
Did you have a successful pregnancy?
Again, I'm so glad to have found this website and thanks to anyone that can provide information and support.
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My 6mo twin DD's are EBF and just started rice cereal on the first. Everything has been going fine except this morning one of them had a diaper rash (lots of redness around her anus). I read this as one of the signs of an allergy. BUT I did just buy a different brand diaper yesterday (which they have used randomly before w/no issues). Do you think its the cereal or the diaper? Im ready to start...
you are facing a lot of challenges and your own problems may also stand in the way of carrying a child.
some may think this is terrible but have you considered adoption? there may be a perfect baby somewhere waiting for a perfect family.
Have you researched if the anti-rejection meds can cause birth defects, infertility, low sperm count etc? I'd definately start there. If there is a greater chance of having a child with a birth defect because of the medications, that's something to be considered up front.
Tami
BUT, she got pregnant (she had a lot of miscarriages though throughout all of this) after trying for a while and had her son who is 12 now. The doctors said it was a mirical that she had a baby and that she would never be able to concieve again.
BUT,7 years later she had her daughter! So don't lose hope just because the doctors say you don't have a chance ok? There's a lot we don't know about the body.
If you want to do IVF then I wish you the best of luck. If there's a way to prevent another person from having PKD then that's great too. Some people might find it unethical to select things like that, but I think that when it comes to health things then it's ok. Maybe picking certain physical fatures like hair color (idk if they can do that yet but there is talk of it) is unethical, but trying to prevent someone from having a genetic disease is perfectly fine in my book.
Good luck!
~Alona
Tami, OMG!!! I was also and L&D nurse for 7yrs. I miss it so much and always loved working in that environment. I am now a Radiology nurse.
Thanks again to all of you for the information and support. I will keep you updated with how things are going.
My sister in law (no PKD) had an IVF and gave birth to 2 perfectly healthy kids (twins), since as you know; the procedure is fairly common now days. She was expecting only one, but both were equally welcomed.
I have heard that sometimes it takes a couple of tries. The down part is that the procedure was expensive and not covered by her medical insurance. I remember hearing the cost was close to $ 20,000 per try, and there is no guarantee. Please bear in mind that I am just going by what she said back then (cost & insurance issue). You need to check with your insurance and your MD.
I didnt know PKD could be detected by PGD. I have conservative feelings regarding gene manipulation (like trying to create a perfect ball player, ja, ja), but PGD to detect ANY genetic disease that runs in the family is perfectly fine under my book. I am happy to know this, since it gives me some hope that my child (PKD) might someday have this opportunity.
Hopefully you will be able to conceive the healthy child you and your husband wish and deserve. If for whatever reason things dont go as planed, you always have the option of adoption, which is also a viable, fully rewarding and beautiful option.
Regards,
PKDAD
We eventually chose adoption and I am blessed to be in a wonderful successful open adoption and am the mom of the sweetest 3 year old boy ever! but adoption is not a cure for infertility. It is another pathway to parenthood, but it should not be second best. My husband and I needed some time to heal from our losses (2 miscarriages) before moving on to adoption.
Infertilty was the hardest thing I have ever been through in my life. And that includes stage 5 CKD (so far!). But there is light on the other side, no matter what the outcome. Best wishes to you and your husband.