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Life with PKD at stage 4/5
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equinegem posted:
Hi team...I would love to be in contact with others in this weird amazing predicament we call kidney failure.

I try to believe I am lucky. I have great insurance. Got on the transplant list in October 2012...and I have the means to make it work. But on the other hand...guys I'm scared. Scared of the surgery. Scared of always being tired and losing my job (then it's a no go for transplant). Scared to use my FMLA...let's face it, doesn't matter how sick we are we should be at work to keep our jobs.

It's hard to be tired all the time and not be able to get what you need done. Hoping once the pools warm up in Florida in March that using energy, getting exercise will help improve strength and fatigue.


Any thoughts? Geez, I'd stand on my head, recite the constitution and eat worms if I thought it would help. Nothing wrong with my brain, desire or sense of humour...that should keep me fighting to live.

My other goal, as soon as I can get past another couple weeks of mandatory overtime with Disneyland Paris (yes, work for the French mouse in Orlando) is to make a web page telling my story and seeking a donor. Not so cool in the family department for a donor...grandmother, dad, brother, self and offspring hit the lotto for PKD also. Thinking of starting with a facebook page.

Team it's a big burden to deal with alone. At 50 I have outlived 2 husbands. Wow eh? My pup and cat are great little companions but not the life companion of my late hubby. We need to network and support one another. I'll say it being alone SUCKS.

Here's the other big, stupid question...I hate being alone. I'd love to have a relationship with someone. Where to meet is the ridiculous problem but beyond that is it fair to involve someone in my dilemma? On the other hand I did tell both my husbands about my situation. One died in a car crash after 9 months of marriage. The other, well we made it 23 years before he had a saddleblock embolism and died.

What a crazy person I am...if this has brought you to figure out how I am, that's fine. I'm going to have to tell my story to get help. Can you believe I'm looking for support, a kidney, ways to help myself, a relationship....and while I'm asking (God, could you give me the strength to either sell my horse or enough mojo to get back on her!)

Ok team....I'll start with the support request here first. Let's chat and take this disease for back corner discussions to supportive strength. Any amazing would be donor's who drop in to read...I'm an 0+. My insurance would pay all and it's legal to reimburse for lost work time, travel, and living needs...I have a horse you can play with. Sorry for the insane honest approach but I'm looking for help/support any way I can find it. I'm baring my soul here team so let's skip the unhelpful responses. Blessings to all who read, whether in health need or just curious...God bless. EquineGem in WIndermere, Fl.

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mrscora01 responded:
Hi there and welcome. I didn't have pkd, my excuse was diabetic nephropathy. After more than 30 years of type 1 diabetes, my kidneys pooped out. I was very lucky and my wonderful cousin gave me one of hers - on her birthday! Believe it or not, I met my now husband on Lavalife after the transplant. I knew he was a keeper when I told him about the kidney stuff. All he said was to thank my cousin for him. We have been married for 3 1/2 years now and he also saw me through my pancreas transplant and an almost year long hospital stay. The last couple of years have been rough but I am now doing better (haven't been in hospital for 7 months - yeah!).

I can't give you advice on finding a donor, but I can suggest another website for good info. It's called TransplantFriends and it's great. Lots of folks with different issues but all very caring.

Hope you stay well and are able to continue to work! I'm a Disney fanatic and am a Vacation Club member that I've put to good use.

Cora
 
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JaniceCromar responded:
Hi EquineGem,


What a huge surprise to read your note here. The surprise part is that I live in Kissimmee and am in stage 3 CKD. I was in stage 4, however, with a lot of work on my diet, I was able to improve my kidney function. My husband works for Disney at the Animal Kingdom Lodge gift shop. He loves it there.

As for me...my doctor is Jorge Laranaga. I am very pleased and have a lot of confidence in him. I was diagnosed with CKD two years ago and didn't change anything in my life. I was a dancer, played softball, and always very physically active. While playing softball, I slipped, fell forward on my leg and broke my tibia. It split up in the knee and after surgery and a hospital stay, two years later I need a cane to get around. My little shih tzu, Susie, is scared to death of that cane.

It sure sounds like you have had some very difficult things to deal with over the years but I can see that you have a good sense of humor. I have been married to Charlie for 55 years. We celebrated our 50th anniversary at the Gaylord in a great "party room" with about 55 people, mostly came from out of town. I don't know how I got so lucky but Charlie is a very patient and loving man and he needs to be in order to put up with me.

We have two children, Bill...age 53 and Paige...age 51. Between the two of them we have four grandchildren...two girls and two boys. We hardly ever see them because one lives in Dayton, Ohio and the other in Philadelphia. Our family is very loving.

I hope you find a donor soon and I want to let you know that I will pray for you everyday. You did bare your soul and I felt that I really got to know you through your note.

Lovingly,
JanChas


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