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miocean

Kidney Transplant

15 posts in this topic

I received a call from a local hospital this morning that I am second in line for a kidney transplant. They have to make sure the first person qualifies and if not it will be me. It is an infant who died of a head trauma so I would be getting both kidneys if it happens. They are going to call me again in a couple of hours and let me know. I may be having surgery this afternoon. I will keep you posted.


ISN Artist

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Well, it came close but I didn't get the transplant. The person before me was a match. At least I know I am getting close to the top of the list and the next time a blood type O comes up it might be for me. Things have a way of working out for the better so there must be another kidney that is better for me somewhere down to line. Thanks for your good thoughts.


ISN Artist

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Hello Miocean

 

Sorry that it wasn't your call for the transplant yesterday. At least you know that you are now top of the list as the other patient was a match.

 

Now you know it won't be long and you hopefully will get a release from your constant dialysis.

 

I hope you enjoy your trip to Florida and don't panic about getting the call half way through the break. Have a great time!

 

best wishes :fairy:

 

Debs

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Hi Miocean ,

 

It was disheartening to see you post that you didn't get the kidney transplant. I know how upsetting it can be since my niece was on a list for years before getting one kidney transplant. I will keep you in my thoughts.

 

Take care, Everyone.

Margaret

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Hello Miocean

 

You're taking the news very well I must say. At least you're near the top of the list now so hopefully it won't be long before we are celebrating your new kidney(s). :emoticons-yes:

 

Take care.


Amanda Thorpe

ISN Sclero Forums Senior Support Specialist

ISN Video Presentations Manager

ISN Blogger

(Retired) ISN Sclero Forums Assistant Manager

(Retired) ISN Email Support Specialist

International Scleroderma Network (ISN)

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Hi Miocean,

 

Ah, I'm sorry this time wasn't it. I have a friend who is 10+ years post kidney transplant and is doing just great. They transplanted a new (adult) kidney, but left her part-functioning kidneys, so now she has three. It seems the important thing is to name them. Hers are Fred, Ethel, and Lucy. Hmmm, that gives you a clue to our age group! So now you have a task - while away your hopefully short wait thinking about names.

tongue.gif

 

Best wishes,


Jeannie McClelland

(Retired) ISN Director of Support Services

(Retired) ISN Sclero Forums Manager

(Retired) ISN Blog Manager

(Retired) ISN Assistant News Guide

(Retired) ISN Artist

International Scleroderma Network

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Hi Miocean,

 

I'm sorry you didn't get the transplant, but glad you are dangling at the top of the list now. Who knows, it could be any day now!


Warm Hugs,

 

Shelley Ensz

Founder and President

International Scleroderma Network (ISN)

Hotline and Donations: 1-800-564-7099

 

The most important thing in the world to know about scleroderma is sclero.org.

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Thanks everyone for your kindness. It is so nice to know that someone else out there understands.

 

I received another call at 6:00 a.m. about another kidney. It was from a 62 year old with high blood pressure. I turned it down. I've been waiting five years so I want a good one when it happens. I am a nervous wreck! After waiting so long I am really scared. I hate hospitals. I went to visit my cousin yesterday at one. She had surgery for colon cancer. It appears to be successful but she will be in rehab for quite a while. I had almost forgotten how depressing they are.

 

I was told I am now fourth on the list. So it could be anytime soon. It will mean some big changes in my life. I am so used to going to dialysis and not urinating that it will really be different. I will also have to deal with losing disability and trying to get it based on scleroderma. We all know what that can mean. I hope I did the right thing turning down the kidney...


ISN Artist

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If you are talking about US Social Security benefits, I don't believe that actual money benefits are paid on renal cases, just a special renal Medicare. So if you are getting a monthly benefit, that does not stop because you receive a transplant as it's just regular Disability benefits, although I suppose it could trigger a review to so if your other problems would still make you disabled somewhere down the road.

 

Medicare would simply become regular Medicare as long as you have been eligible for benefits for two years. If all you are eligible for is renal Medicare, that could be stopped at a certain point.

 

Now this is based on memory that is kind of old now- I used to work for Social Security. So I would call to check it out with the agency. Actually ask for a pamphlet on renal medicare. :)

 

I wish you the best of results- what a blessing it will be to be free of dialysis.

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Hello Miocean

 

Like you say if you've waited that long you want a gooden!

 

I didn't realise you no longer passed water if on dialysis, what happens to the bladder? I would never want dialysis but as a person with interstitial cysititis not having to passing water sounds glorious! Sorry got ot go now and...well...pass water...again!

 

Take care.


Amanda Thorpe

ISN Sclero Forums Senior Support Specialist

ISN Video Presentations Manager

ISN Blogger

(Retired) ISN Sclero Forums Assistant Manager

(Retired) ISN Email Support Specialist

International Scleroderma Network (ISN)

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I am late on posting on this but it doesn't go with any less on just how bad I feel for you. I can't even begin to imagine how much you are on pins and needles waiting for that phone call. My uncle is on dialysis and he has to travel 90 miles round trip for the treatments. I too have cystitis due to the cyclophosphamide and I know that scleroderma can at any time decide to attack our kidneys so I too could some day be in your shoes. I so hope that you will soon be getting your kidney transplant. You have a wonderful disposition about it and I'm sure that helps as a positive attitude can help so very much.

Warm hugs,
Peggy

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