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.
Hello All,
I'm hoping to find out if anyone has experience with the various drugs used to stimulate egg production in IVF/PGD.
I was diagnosed with PKD at 19 when I noticed unexplained high blood pressure, and have a very positive (almost 100%) family history. After previous experience watching family go through kidney failure and transplant, I have decided that I will definitely not be passing on this gene and am looking into alternative options - IVF with PGD (choosing only the embryos who test negative for the disease) or adoption.
I am currently 25 and have normal kidney function with no signs of decline yet. Other than the high blood pressure and very frequent UTIs, I currently have no symptoms. I'm hoping to stay on this route and preserve my health as long as possible, and won't put my body through the stress of having PKD-free kids if I feel that the risk of that impacting my kidneys is too high. I would like to wait as long as possible to have kids, but I know that the longer I wait, the riskier it gets, so I'm hoping that 3-5 years will be reasonable.
I am very interested in having kids that are mine genetically, and would love to find the right solution that allows this. However, in my research I've found a few people who attributed their quick decline in function after pregnancy to the hormones and other medicine used during the process of IVF. I'm hoping to get more insight into whether anyone else has gone this route and if they've had any decline in function, and if it appeared to be related.
Because of my consistent hypertension (140/90 minimum without medicine), I'm very nervous about the idea of pregnancy because of the risk of preeclampsia and permanent damage to my kidneys. Most people say that having 4 or more kids puts you at a higher risk of kidney failure, but that leads me to believe that each pregnancy increases your risk to some extent. For that reason, I am also considering surrogacy but am not sure how I could ever afford that. So, if you have any experiences relating pregnancies and kidney failure, I would appreciate hearing those as well.
Basically, any insight you can give into this process would be extremely helpful. I'm the queen of research, but have not had much luck with Google and would really like to hear from real people who have gone through this in the past.
Welcome to the group. Whilst I have no experience of IVF or PGD, I have had two children (I was diagnosed after having them; no family history). What I can tell you is that pregnancy led to an increase in my abdominal girth and I now know that this was probably because it made my liver grow. My liver is full of cysts and is huge. Oestrogen is implicated in liver cyst formation, and pregnancy increases oestrogen levels. This doesn't happen to everyone, but it's a risk, so just be aware.
My BP was normal throughout pregnancy, but with a starting point of high BP you are likely to have problems with this.
You might like to read this from this site a few years ago:
https://www.dailystrength.org/group/polycystic-kidney-disease-pkd/discussion/pkd-and-fertility-treatments
Good luck.
What a tough dilemma. I and most of my friends had our first babies between 36 and 43. I only had one, Most of my friends had 2, a couple had 3 and 4. One friend had her last 'surprise' baby at 46, healthy, happy and whole.
That bp issue is concerning though, isn't it? Since you are the queen of research check out pomegranate juice and tumric's effect on bp. You should see if you can lower that without meds.
In regard to your dilemma:
Here is something to think on.
Unknown to me, or any of my 5 siblings until I got diagnosed with PKD in my 50s, we all have the PKD gene but none of my 5 siblings have PKD, Neither of my parents had it, my Mom is 96, living independently, my Dad died of Alzheimer's at 73. We suspect that my Dad's sister may have had it as she died of a brain aneurysm at 39 but none of his 4 other siblings had it, One of my sisters did the genealogy for both sides of our family and there are very few early deaths going back to the 1400s.
So just because your baby may have the gene doesn't mean that it will develop PKD.
I personally think I triggered the gene in my body by too much Toradol, aka Ketorolac Tromethamine, a non-narcotic very strong pain med and one of the side effects is cyst development.
Research epigenetics for more info on active versus inactive genes.
In the meantime, live well, laugh a lot, and have fun!
https://ghr.nlm.nih.gov/condition/polycystic-kidney-disease