I am a 33 y/o woman who has had CKD my entire life - a biopsy recently confirmed it stems from scar tissue on my kidneys, probably from a kidney infection I had when I was an infant.
Today, my GFR is at 16 and I feel I am at a serious crossroads with absolutely no idea what to do next. I'm really hoping someone else here has been through something similar and can give me an idea.
My partner and I want to have a baby. My nephrologist told me that chances are, if I were to get pregnant right now, the pregnancy would drain the remainder of my kidney function and I would have to go through the rest of it on Dialysis. Has anyone else done this? Can you tell me what it was like?
Considering my age, I don't feel I have tons of time to have a family of my own. Although the dr's have been clear that dialysis while pregnant *is* an option, I know they all would prefer if I had a transplant first. My partner is a potential donor and a blood type match (bless him) but I'm really worried about post transplant complications. Are they common? My dr said best case scenario, I'd require a year healing time before I'd be allowed to get pregnant. So when you take into consideration all of the pre-transplant tests/wait times etc, then the healing time, once all is said and done I'd be more like 35. That's best case.
Also, the anti rejection drugs terrify me. The side effects, the weight gain, the risk of cancer... And I've also been told that transplants have a life span of 10 years. So that means I'll need so many more over the course of the rest of my life. It doesn't seem fun at all.
So I came up with this master plan that I would NOT get a transplant and just stay on home dialysis for the rest of my life. lol. Because how bad could it be to be hooked up to a machine while I sleep? But apparently that's not a viable plan because of life expectancy etc..
So...all of this to say...I'm very confused. Should I just risk the ticking clock and do the transplant first? Should I get pregnant first, then do the transplant, and somehow take care of a child while recovering? Should I just stay on dialysis forever?
I know I've written a novel but I would be so grateful for ANY perspective.
Thank you in advance, and thank you for reading this far.
That is a lot to consider! I have not given birth so I can’t speak to that. My younger sister had a baby when she was at about 25% functioning and it dropped her functioning to 16%,. I Judy had a transplant in December 2017, and it was about 9 months of testing for my twin sister to be cleared to donate to me. From my understanding they won’t consider transplantation until you are below 15%. So far I feel well with the medications other than I am so warm all the time!! It’s quite the change as before the transplant I was constantly cold. I have gained 15lbs since the transplant and now I am beginning to lose that weight. The prednisone really increased my appetite and I was waking up in the middle of the night starving. I am not too concerned about the weight gain as I wasn’t eating much before transplant because I wasn’t feeling well, nauseous and tired most of the time and had actually lost 40lbs in the year before transplant. I am hopeful that I will beat the averages and have my new kidney for longer than the averages of 10-15 years. I chose to have my transplant before I needed to start dialysis