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So sorry to hear this:( I watched my dad suffer thru 2 failed rejections.  The emotional and physical toll was hard to watch.  Thoughts are with you and hoping another opportunity for donation comes along. Do your best to fight the depression.  All the best in the New Year

Hey Jasper. So sorry to hear of this downward turn for you! Feel free to "talk" as much as you need!

Thinking of you.

Hello I am new to CKD.  I am a type 1 diabetic and have been having issues with my kidney function. 

As of yesterday my GFR is 33 and am trying to figure this all out.

I am feeling very overwhelmed.  I have been following a CKD diet since January however my GFR went from 44 to 33?? 

So I'm hoping to learn as much as I can 

Hi Laura. I have CKD from a genetic disease. I’m at 11 GFR and waiting for dialysis. It is all very overwhelming at first. My function goes down at a predictable rate. Check out DaVita.com for recipes. They are adjustable for diabetes - I’m sure you know what applies to you. They recipes are really quite good. Also there is a Facebook Page called Living with Chronic Kidney Disease that I belong to. It’s nice to be able to share and read there.

shirley 

Thank you 

Hi everyone,

I'm new to the site and glad to be here. It is reassuring to see so many others sharing info and support. Allie

Welcome Allie

been pretty quiet on here lately.

Shirley

Thanks for the welcome Shirley. I'm glad to just know people are here for now. I'm doing my best to learn what I need. It's all pretty scary. 

The trials and tribulations of kidney donation 101.

For those considering donating  a kidney to someone else or who are thinking of joining a kidney paring list like I did. I have to tell you right off the bat do not get your hopes up.

I had  a friend who did not match my kidney but was willing to donate a kidney to someone else and down here in the USA we have a thing called, " paired donation". There can be a chain of up to 8 couples each exchanging kidneys so that the person who needs one gets the right kidney for them.

Kidney donation is not for the weak. You must be 100 percent healthy and have absolutely no issues with your body to be even considered for a kidney donor. No high blood pressure, no heart problem, no lung, renal or  any sign of cancer in your body. They go over you with a microscope with plenty of blood draws CT scans and the fun colonoscopy and much more even to qualify to get on the donation list.

Once you are on the list you must remain healthy 100 percent. If anything goes wrong with you then your scrubbed from the list. The test will repeat every so many months to keep you on the list so this is not a one time thing.

Anyway.... My friend got on the list after jumping thru all the hops with the test background and about 3 dozen trips to the University of Texas to be worked up for a donor and was approved. Hurray right. M\my friend got on the list!!! Yeah!! The future looks bright again for me.

About a month later I get a call from the paired donor coordinator saying there was a match involving 6 people so a small chain. Now at this point all it takes is one person to get sick or become ill so the clock starts to tick. I go back in for more blood work and the friend also has to go in about 4 separate times for more blood to cross match and verify. It gets down to 3 weeks before the actual transplant is to take place and my friend gets  a call saying that her kidney was declined by the Michigan hospital because she has one artery on her right kidney that is slightly smaller the it is suppose to be and they decline her kidney. So now all of the 6 people waiting for the transplants has the plugs pulled.

Want to talk about a let down. And you wonder why they even allowed my friend on the list with a small artery on her kidney? The University of Texas missed it and put my friend on the list only to be pulled off of it when it got down to the wire.

Now I know I am grateful my friend did not donate a kidney only for it to cause a problem for them later or a problem for the person they donated it to but how can a hospital that does kidney pairing lists miss soemthing like a small artery on a CT scan?

This makes me think twice about using the University of Texas as the place to treat myself and performing an operation as complicated as a kidney transplant if they can not even look at a CT scan and say " Humm tiny artery on the kidney, nope declined' That it took a whole other hospital over a thousand miles away to find the defect and reject the kidney and to have to jump thru all those hoops only to be accepted and turned down 3 weeks from transplant.

So my advise to you is pick the very best hospital you can for your transplant and if you get on a pairing list and receive a call that says there is a match don't  believe it until you wake up from the surgery with a new kidney because any time before then the bottom can drop out.

The psychological rollercoaster for both the person needing a kidney and for the one willing to donate a kidney is no fun. No one is there to council you along the way and no one is there to help you mentally deal with all of the ups and downs. This is a road you walk alone.

You need to be ready for denial and prepared when it comes. I have said all along the mental side of this disease is as much an issue as the disease itself.

For me now, I remain on dialysis which is doable right as I have no issues with it. I go back on the cadaver kidney list waiting on someone to die who was kind enough to donate organs. . So in the famous words of Phil Collins, We wait and we wonder."

Oh, I’m so sorry Pete. I’m near tears for you. I can’t even begin to imagine how horrible this must be for you. I had no idea the testing could be so exacting. I’m thinking cadaver kidney, how can they test so quickly and go ahead with a transplant? It seems to me that they could easily miss something like that and yet successfully use the kidney anyway. Of course there would only be one person affected in that case but I believe cadaver transplants work out. New homework for me. Thank you for the warning. Unfortunately it takes people going through these harrowing experiences and sharing with the rest of us in order for us to even know. I’m in Canada and I’m stuck in a health district and have no choice even on nephrologist unless I move. I have thought of moving backs east but there are no guarantees anywhere I guess. I find the Kidney clinic I go to is of very little help to me emotionally. And yes, emotional help is what we need most when we are living with CKD. There is a social worker at the clinic but I don’t know what she’s there for. She got me a Handi Dart pass and that seems to be the limit of her power. 

I wondered where you’ve been but had no idea you were going through this. Sending prayers.

shirley

Thanks Shirley.

The theory is a living kidney donor would be a beter match and last longer. That is what the medical field preaches and if you go by statistics they are right. I can not find fault in that. They did a study of 248 people  that received  transplants both from cadaver and from healthy living people. They looked at the number of people still living after 1 year 3 years and 5 years. They discovered that after these time frames more people died with a cadaver kidney then they did if they received a living kidney. So the math holds up that a living kidney works better and longer.

The advantage to receiving a live kidney donation is that there is no rush to get it done and you can plan for it. Plus you get a better match and a more likely outcome. So ideally you want a live kidney if at all possible. For older people like me at 54 I figure 10 years or more would be enough time for me to do the things I want to do so I would be good with a cadaver kidney. That's is the average life expectancy for one of those 10 to 15 years, some sooner some later. It all depends on the medical condition of the receiver of the kidney. If you put a perfectly healthy kidney into a diabetic it would not be expected to last as long.

Time to get some dinner going. My tape worm is acting up. LOL

I didn’t know that Pete. I did a survey yesterday and said I thought outcomes were the same. Oh well, the survey was to determine how much kidney  patients know about transplants. I’m 66, almost 67, so like you will take what I can get. My current thinking is that if dialysis works it’s a 50/50 thing. I have no expectation of seeing 70. I apparently have 6 months to dialysis and in BC can’t be put on a transplant list until I’m on dialysis. If I had a living donor they would test immediately of course. 

Shirley

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