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Preemies
Lynz031205
member
NotJustAnAuntie please come in
Lynz031205
member
in Preemies
Hey tell me about your kidney failure please I read on a previous post about it, I have kidney failure as well. Well I had it at 17 and then when my baby came they failed again, and now there at 18% and waiting on a kidney transplant... our stories seem similar! Your the only younger woman I have met with the same story... (please share only if you feel comfortable) Thanks
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Re: NotJustAnAuntie please come in
Of course! Mine was actually caused by an autoimmune disease called Goodpasture's Syndrome. It happened over the course of about 6 months when I was 23. (I'm 31 now)
I spent three years on dialysis and then in August 2004, my amazing mom gave me a kidney and a new chance at life. I crammed a lot of living into these last 4 years! DH and I bought a house, got married, went on an amazing European honeymoon and get pregnant!
I was doing OK with the pregnancy, but my blood pressure was just out of control, and I had a perinatologist who wasn't very attentive and never put me on any sort of bedrest or restrictions or ANYTHING.
Anyway, I had DS at 28w4d, and went on with life. When he was about a month old, I got really sick and ended up in the hospital again; they did a biopsy on my (transplanted) kidney and told me that the damage from the pre-e was enough that I'd probably only get another 1-4 years out of it.
As it always seems, I got the shortest possible time and it just kept getting worse and worse.
I started on hemodialysis in mid-October and am trying to schedule my surgery to get an access put in for peritoneal dialysis. The wait at my transplant center is 4-6 years... I'm hoping to find a friend to donate, but I don't know right now. It took me 3 years to let my *mom* be tested! I don't know how long it could take me to get up the nerve to let someone who isn't even related to me! LOL
So are you on dialysis yet, or is the 18% function enough to keep you going?
My kidneys were at 30% before I had Matalynn, now there at 18%. So my kidney dr says absolutely NO to us having any more children... Which is heart wrenching BUT atleast I was able to have this one. I am in need of a kidney transplant but my insurance currently wont cover it
so I am looking for alternatives (do you know of anything else) I really do not want to do dialysis but if it comes to where its a life or death situation I will do it, ofcourse. Anyway, its good to see other women that stuggle with similar issues...
Hi Christy! Congrats on your tx lasting so long! That's awesome! I loved being pregnant, and until it went bad (which was fast and awful!) it was great! We joked that the baby used my extra kidney as a pillow to keep him comfy.
I really, truly think I had a sub-par perinatologist who didn't do his job. I had an u/s at every appointment, but that was it... he didn't do regular bloodwork, he basically ignored my gradually increasing blood pressure... I had a rare complication called pseudotumor cerebri (a fake brain tumor!) and he just sent me to the opthamologist... I should have been put on bed rest! That was totally my body saying it wasn't happy. I wish I'd listened harder.
I think that because of my own experiences (and you're probably the same) my definition of "feeling fine" is a lot wider than normal people, so there are things that I ignored or didn't think were a big deal because I always have random aches or headaches or whatever. It took me having a STROKE sitting at my desk at work to call L&D!
That would be my main advice; just pay attention and call your doctor for ANYTHING that seems less than perfect. It might drive the doc crazy, but anything that keeps that baby cooking in you longer is good!
We're incredibly blessed in that DS doesn't appear to have any long term issues due to him prematurity, but only time will tell for sure!
Feel free to email me if you want! imlibis(at)gmail
Lynz- Are you sure you can't get it covered? All ESRD patients are put on Medicare, which covers a big chunk of the cost of tx. In the long run, a tx is cheaper than dialysis (which is about $40k a MONTH!) so it doesn't make sense that they'd rather have you on dialysis!
If/when it comes time for you to go on dialysis, please please please ask them about peritoneal! It's one you do at home, while you sleep. It's the best thing that ever happened to me and my life (if you have to be on dialysis, this is the way to go!) and it frustrates me because so many doctors encourage their patients to do hemo, which for a young, otherwise healthy person who just happens to have non-functioning kidneys, is a horrible place to spend time. (sorry... getting off my dialysis modality soapbox! LOL)
I agree, I had great ins through my parents when i had my tx but i know alot of people were on medicare. your kidney dr should know all about it or even a transplant center can help you find a way. i went to stanford university and they were very helpful with all the insurance and money problem info. I do know too that once ou have a tx medicare should pay for rx for the life of the tx now. it used to be they would only cover the first 3 years and then you had to find your own ins, but i believe it has changed. a great website for peolpe with tx and well as waiting for a tx is transplantbuddies.org they have a lot of people on there that ask and answer very good questions. i wold love to talk more about our experiences and will email you when i have more time.
christy