RE: Kidney transplants

[Guest guest]

Hi all

About 5 years ago my mom was diagnosed with 2 different types of kidney

disease. At that time it was determined that she has only 30% function in both.

Dialysis was just around the corner. 1st thought we all had was kidney

transplant there was 7 of us kids, just one had to be a match. So we did a

little

research and her urologist filled us in on what we were missing.

Our 1st issue to over come with her was blood type, my mom is ab (RH

neg), the rarest there is. All us kids happen to be RH neg but no AB's. So

none

of use could donate. brought us all quite down. None of our kids are AB

either. Then we thought about registering her for organ donation until the

following information did show up. With her blood type she had a 1 in 1,000,000

chance of getting a suitable donation. If she did find donor and mom was still

strong enough for the procedure she faced the following issues. Rejection rate

is very high for kidney donations. Anti rejection drugs take a toll on your

body also. Anti rejection drugs -- include predenisone (DR thinks this may be

something that lead to mom's kidney issues to begin with.) Why would he let

he be exposed to it again? Drug reactions, that we know of my mother has no

fewer than 150 drug allergies, a pharmacists nightmare. Chances were very high

she would not be able to take the drugs, then where would she be. Next DR

brought up rejection again saying rate was very high and most recipients

required another transplant within 5 to 7 years, then you are right back where

you

started from, hoping and praying each day that the phone would ring and a donor

is found.

She decided that this was not the route for her. DR told her that she'd

be on Dialysis within a year. 5 years later, she's still holding her own at

30%. DR's are mystified as to how she's doing it. It has been a hard road for

her, ups and downs all the time. BP is her biggest issue. They get her

settled in on a BP med and after 2- 3 months she starts having allergic

reactions to

the drug or it stops working for her. At one point in time her PCP changed

her BP med but forgot discontinue the other. We almost lost her with that one.

She says her success is due to her diet, she eats much like Cassie and I

have to but to an even larger extreme. She eats NO animal protien

whatsoever, thus reducing fat also. Her diet is mainly veggies, she loves here

Caesar

salads. OK she slips once in a while we all do. She has no caffeine except in

green tea, the only other thing she drinks is water! Must be filtered though,

nothing straight from the faucet though. She even has her own well and won't

drink it unless it's filtered.

Funny thing is both Cassie and I have SPINK1 and pancreatic problems,

when mom does slip up boy is she ever sick. You'd swear she's having a

pancreatic attack. But she says no. Symptoms are almost exactly the same. RUQ

pains,

nausea, vomiting. Sweating, followed by chills, fever and days and days of

pain. She says it's not the same but I've seen them both in action when sick and

I see no difference between the 2. Only difference in the attacks is mom

falls asleep between outs of vomiting, a sure sigh her kidneys are acting up.

Funny how she thinks Cassie could have kideny problems from pancreatitis but she

couldn't have pancreatitis as a result of kidney problems.

Anyway this just what we ahve found out from dealing wiht mom. Just my 2

cents.

God bless

Patty Hurst

Bangor, ME

Maine State Rep

PAI