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| | | From: kimsshadow (Original Message) | Sent: 2/10/2008 3:00 AM |
Hi well.. I guess I'll start with my diagnosis. I was diagnosed in Dec. 2005. All my blood work was good. Both my general practitioner and a nephrologist said I shouldn't have to worry for another 15- 20 years or so. My kidneys were a little bigger than normal but not too much. My blood pressure was a little high so my doctor put me on Diovan with the water pill in it too. I was on those meds and only those meds for 4 1/2 months when I started to have severe hand cramping. I called the doctor and she recommended I come in have my bloodwork done and she figured it was my potassium levels. It ended up being my creatine which went from a 1 in Dec. to a 4.1 in May. Apparently I baffled all the nephrologists around here because I had gone from 100% kidney function to 20% in 4 months, which is unheard of. I live in Idaho about 45 minutes form Spokane, WA. and even when I went to see a doctor in Spokane he had no explanation for it. Anyone out there have this happen to them as well, please let me know. Even my kidney size doubled in like 7 months. I'm a 38yr. old mom of 3 so when my doctor recommended peritoneal dialysis my husband and I talked it over and chose the catheter surgery to happen immediately. I didn't get in to see this particular Nephrologist until Sept. 2006 because of his high patient waiting time. I had the catheter put in in Oct. 2006. I started PD in June of 2007. My dad is the only person that's been tested to be my live donor but Sacred Heart Medical Center in Spokane would "really like to find someone my own age" so he's on the bench. I don't have anyone else at this time. I've had a couple of people start and not finish and a cousin who is overweight be denied, but now she is possibly donating to my mom who is in need of her second transplant. I tell you it's a rollercoaster emotionally. I finally gave in and joined this site because I felt so alone as being such a young person with PKD, relatively speaking, around here. Everyone I've seen at the dialysis center (it's a hemo and home patient PD center) are at least 65 yrs. old. The disease does not run in my family. My mom got it as a result of a mutation we figure because no one ever way back on any side of the family has this. So we are the first and now I have 3 children to carry it on.... great huh?!? I think that's the hardest part about this whole thing knowing I've doomed my kids. Anyway I hope to find some people to relate to here and of course support from people who are going through it too can come in handy. Really knowing you are not alone is a definate plus. Thanks for having me, Kim |
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Hi Kim! I too am a thirty something (33) mom of three children 9, 6, and 3. I was also told by my nephrologist when I was diagnosed that it would be 15-20 years before I went into renal failure. But he was wrong too. I started PD in May of 2007. I just went on the cycler a week and a half ago. My father-in-law was tested and went through all the testing and they also want me to find a younger donor as well. He is almost 60. So we are testing younger donors and waiting for results. We're hoping that my husband will be a match. I supposedly got this disease through spontaneous mutation as well. No one that I know of has this disease. We seem to have a lot in common. I wish you luck with finding a donor and if you ever need to talk feel free. It really feels good to find someone your age who is living a similar lifestyle as you to be able to communicate with. Take care, Christine |
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hi Kim and welcome to a great support group. I think you will find you are hardly alone. we have people here of all ages, some went into renal failure young, some in their 60s have not reached it. I know it isn't easy having young children and having to face dialysis but we are here to help you through it in any way we can. feel free to ask all the questions you want and someone here will be able to relate to what you are dealing with. |
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Kim, Hi and welcome!! I wanted to say that I don't think there is a mother here that hasn't or doesn't feel guilty at some point with the idea that their children may have this illness. I have two children of my own. They do have a 50/50 chance of having this illness. The really nice thing is that there is research with the idea that there may be a new treatment out soon. Twenty years from now the hope is that no children will have to have dialysistransplant from PKD. I can imagine the rollercoaster ride you are on. My mom was on dialysis over 4 years and tested over 20 live donors with none matching. It was terrible. Excitement from testing starting and dissapointment of it not working out. Up and down all the time. If you ever need to talk feel free to send me an email. Jenny |
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well I found out I had it 12 years ago, when my mom went into renal failure, she had it , and didnt know it until her kidneys shut down. I went and wasn diagnosed,saw the cysts on the ultrasound so I knew,luckly both my children dont have it.
I was going along pretty well until about 3 months ago, I will be 48 in June, I am now on bp meds, had bloodwork done and, phosphorus is up, pottasium is up,creatin up, now bloodwork, for red/white blood cell count, cholestrol, and a whole bunch of other stuff.OY!!! I dont know where I will end up from here, my mom passed away 8 years ago at age 65,because she didnt eat correctly and her protien levels were to low.I am about 50-60 lbs overweight and am scared to death, have an appt with the nephrologist this tuesday.
I cant say that when my mom was on hemo dyalisis that it stopped her from doing stuff,they went to visit her brother in North Carolina, and would stop into a fast food place and heat up the bag in a microwave, hook it to a S hook in the car and off they went! right now I am in stage 3, so wish me luck and Im glad to know there are others out there like me |
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