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LightLizard
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« on: August 28, 2007, 08:04:01 AM »

I haven't been able to find much evidence or any statistics that say what the avaerage length of time someone can live on dialysis is. Does anybody know or even have a ball-park figure of what that might be?
I realise that it would vary widely and be dependant on many factors, but I can't help but wonder.
Yesterday, I received a package in the mail from a hospital that my nephrologist had sent to me. It's information about getting a kidney transplant, along with the forms for registering and getting the specific tests done to initiate the process.
I am still undecided. I don't feel too bad, being on dialysis, and there is also the fact that because I have hepatitis C, I would only be eligble to receive a kidney from a Hep C patient.
Also, the information I have read about the side-effects of the anti-rejection drugs one has to take, following a transplant, is not encouraging, to say the least.
How long can someone live on dialysis?

love

~LL~
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Black
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« Reply #1 on: August 28, 2007, 08:58:31 AM »

The last stats I saw was the AVERAGE life expectancy of a new dialysis patient, going in center 3 times a week, is 5 years.  Home dialysis patients have better averages - in 10 years 70% are still alive.

That being said, there are people who have been on in center dialysis for decades.

Remember Epoman had been in center for around 13 years and died just a few months after going to the NxStage.  He said that the poor care in the first years of dialysis is what caused most of his problems and that is what provided the drive to use this site to educate people so they could get better care than he got.

Much also depends on what caused the kidney failure.  For example, diabetics have a much tougher time handling the additional problems that diabetes causes and PKD patients are often generally healthy other than the kidney failure.  Your overall general health and genetics play a significant roll, as well as how proactive you are in your care (medical professionals are human, don't know it all, and do make mistakes), and probably most important, how well you take care of yourself.

If you are considering a transplant, even a tiny bit, get on the transplant lists ASAP.  If a kidney becomes available you can always say "No." and stay on dialysis, but deciding in ten years you should have gotten on the list is not good.  :twocents;

A transplant is like the Gimp box of chocolates - "...  you never know what you're going to get."  Some people do really well and take few drugs, some transplants never work.

Karol is good with the fact sources, maybe she can give you some stats on transplant success rates and survival rates.
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Lorelle

Husband Mike Diagnosed with PKD Fall of 2004
Fistula Surgery  1/06
Fistula Revision  11/06
Creatinine 6.9  1/07
Started diaysis 2/5/07 on NxStage
LightLizard
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« Reply #2 on: August 28, 2007, 09:01:44 AM »

thanks black! your clarity is refreshing.

love

~LL~
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SpeedFleX
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« Reply #3 on: August 28, 2007, 09:24:16 AM »

A guy I know started 34 years ago, never had a transplant and is still living healthy life, he told me that he always watched out what he ate and how much he drank. Drinking is one of the things thats get your heart because it fills up and stretches then after only 4 - 5 h the water is sucked up again which is hard on the heart.

I've been on dialysis for 8 years now, my 9 is coming up and so far nothing new has come up and I hope I live a long healthy life under these circumstances
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LightLizard
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« Reply #4 on: August 28, 2007, 09:29:38 AM »

thanks speedy! that is good to hear (read)!!

love

~LL~
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angela515
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« Reply #5 on: August 28, 2007, 10:00:34 AM »

If you are considering a transplant, even a tiny bit, get on the transplant lists ASAP.  If a kidney becomes available you can always say "No." and stay on dialysis, but deciding in ten years you should have gotten on the list is not good.  :twocents;

I could not agree with this statement more. If you end up deciding you do want a transplant, you will then start the long process of getting on the list and then waiting when you could be doing it now, and sitting there waiting while you decide.. if you get an offer, like Black said, say no if you are unsure or whatever. Also, if you do end up making up your mind and the answer is no, you do not wish to have one.. take yourself off the list.

Good luck hun. :)
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del
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« Reply #6 on: August 28, 2007, 10:31:25 AM »

Hubby has been on dialysis for 10 years now and he is healthy than ever!!  He started nocturnal home hemo in Oct. 06 and that is fantastic!!.  He always watches what he eats and his fluid intake.  He very rarely has any more than 2 kg on even when he was 3 days a week.  Most nights now he has about 1 kg on or less!!  Apparently for a lot of people it is the amunt of fluid gain that causes problems over the years. Don't let anybody presure you into having a transplant. It is your lifwe and has to be your decision. Hubby refuses to be put on the list because he is dooing so well and feeling so good!!
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LightLizard
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« Reply #7 on: August 28, 2007, 10:36:28 AM »

thanks angela and del, for your words and advice.
i also am one that does not put on lots of fluid. i might gain a K and a half during the day, of course, it depends on what i eat, how much i drink and such, but the night cycler seems to be quite efficient at removing the excess and i find my weight is pretty stable since i've been doing P/D.
i just had an old tai chi student ask if i wanted to start teaching her and a small gathering of friends soon. I'm considering it seriously. I need to get out more, I think.

love

~LL~
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« Reply #8 on: August 28, 2007, 10:55:32 AM »

There are several factors that would affect life expectancy beyond the dialysis itself. Things to consider are the cause of your kidney failure and what other medical issues you have. 

Another factor is how well you take care of yourself. You have a better chance at long-term success if you eat well, watch your levels of phosphorous, potassium and control your blood pressure and fluids. In general, become familiar with your labs and keep on top of your meds.

You will often hear that "the average" life expectancy on dialysis is 5 yrs, but you must remember, some people start dialysis well into their 80s these days.

Continue to do research and live the healthiest lifestyle you can.  Some people cope just fine with the restrictions of dialysis while others struggle physically and emotionally. Do whatever it is to have the best life possible that fits for you.



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Admin for IHateDialysis 2008 - 2014, retired.
Jenna is our daughter, bad bladder damaged her kidneys.
Was on in-center hemodialysis 2003-2007.
7 yr transplant lost due to rejection.
She did PD Sept. 2013 - July 2017
Found a swap living donor using social media, friends, family.
New kidney in a paired donation swap July 26, 2017.
Her story ---> https://www.facebook.com/WantedKidneyDonor
Please watch her video: http://youtu.be/D9ZuVJ_s80Y
Living Donors Rock! http://www.livingdonorsonline.org -
News video: http://www.youtube.com/watch?v=J-7KvgQDWpU
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« Reply #9 on: August 28, 2007, 11:12:20 AM »

You can find a full table of statistics for the varying life expectancies of people with endstage renal failure according to age group, presence of absence of diabetes, and treatment modality (transplant or dialysis) in a medical text by Professor Gabriel Danovitch, Handbook of Kidney Transplant (Philadelphia: Lippincott, 2001) p. 16.  His data are based on a huge statistical survey of many patients over many years and show that for the average patient without diabetes, a transplant doubles the life expectancy.  For a patient with diabetes, a transplant triples the life expectancy.  Thus a diabetic man in his forties on dialysis can expect to live 8 years on average, while a diabetic in his forties who gets a transplant can expect to life another 24 years.  The life expectancies of dialysis patients overall are remarkably similar among age groups, which is surprising, since younger people normally have a much longer remaining life expectancy than older people.
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« Reply #10 on: August 28, 2007, 11:14:20 AM »

Much also depends on what caused the kidney failure.  For example, diabetics have a much tougher time handling the additional problems that diabetes causes

Are you referring to problems during dialysis or with a transplant? I'm diabetic and may soon be going on dialysis or getting a transplant and am completely lost as to whether I want to start dialysis or just jump ahead and go straight to a transplant. My mother's boyfriend is an O+ just like me and is willing to donate his kidney to me. I'm just not sure what I want to do. I too have not heard good things about transplant drugs, side affects of the transplant, survival rates, etc. but then again, dialysis doesn't seem very good either. I guess I need more information. Does anyone know what the best option is for a diabetic?
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« Reply #11 on: August 28, 2007, 11:16:19 AM »

Hey! stauffenburg's post wasn't there when I typed my question!
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Diagnosed type 1 diabetic at age 6, CKD (stage 3) diagnosed at 28 after hospital error a year before, started dialysis February '09. Listed for kidney/pancreas transplant at Ohio State & Univ. of Cincinnati.
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« Reply #12 on: August 28, 2007, 11:20:28 AM »

You both must've been posting at the same time and he just beat you in adding his reply, thats all  ::)
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LightLizard
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« Reply #13 on: August 28, 2007, 11:35:34 AM »

yeah, its a tough call, all around. if i knew that i could maintain how i feel now well into the future, i would not even consider a transplant as an option, in keeping with the philosophy of 'if it ain't broke, don't fix it' - but, in our condition one can't rely on feeling good in the long term, no matter how well one looks after themselves.
getting on the list and going with the process, while keeping in mind the daily changes one goes through seems like a reasonable approach, to me. even if and when a kidney becomes available for me I may not feel inclined to accept it, seems reasonable. at least, being on the list does offer an option of some kind, which is better than no options, no?
i'm 58, non-diabetic, and the cause of my kidney failure is due to long-term hep C infection, apparently.
the liver specialist says my liver is in suprisingly good condition, but the hidden demon high blood pressure is probably the demon that trashed my kidneys, as my body tried to deal with the hep C.
i am in relatively good condition, otherwise, i think, but who knows how long that can last?
i never was much of a gambler, but this is vegas on steroids, if ya ask me!

love

~LL~
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« Reply #14 on: August 28, 2007, 12:02:23 PM »

Ok this is a lot of reading paddbear. There are positives and negatives to everything in life - but this will give you an idea of some of the possibilities.
If you haven't see these threads you may want to check out:

Transplant or Dialysis? http://ihatedialysis.com/forum/index.php?topic=1989.0

Kidney transplant triples life expectancy in end-stage renal failure http://ihatedialysis.com/forum/index.php?topic=4536.0

35 years on dialysis! http://ihatedialysis.com/forum/index.php?topic=3500.0

Living Despite Dialysis http://ihatedialysis.com/forum/index.php?topic=60.0

Live vs Cadaver donation http://ihatedialysis.com/forum/index.php?topic=4076.0

Thirty-five Years on Dialysis http://ihatedialysis.com/forum/index.php?topic=4486.0

Wait nearly over for transplant hopeful (first transplant lasted 37 years!) http://ihatedialysis.com/forum/index.php?topic=2468.0

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Admin for IHateDialysis 2008 - 2014, retired.
Jenna is our daughter, bad bladder damaged her kidneys.
Was on in-center hemodialysis 2003-2007.
7 yr transplant lost due to rejection.
She did PD Sept. 2013 - July 2017
Found a swap living donor using social media, friends, family.
New kidney in a paired donation swap July 26, 2017.
Her story ---> https://www.facebook.com/WantedKidneyDonor
Please watch her video: http://youtu.be/D9ZuVJ_s80Y
Living Donors Rock! http://www.livingdonorsonline.org -
News video: http://www.youtube.com/watch?v=J-7KvgQDWpU
paddbear0000
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« Reply #15 on: August 28, 2007, 12:06:13 PM »

 :bow; I like reading! Thanks so much--I'm settling in with some iced tea right now to read them!
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I HAVE DESIGNED CKD RELATED PRODUCTS FOR SALE TO BENEFIT THE NKF'S 2009 DAYTON KIDNEY WALK (I'M A TEAM CAPTAIN)! CHECK IT OUT @ www.cafepress.com/RetroDogDesigns!!

...or sponsor me at http://walk.kidney.org/goto/janetschnittger
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Diagnosed type 1 diabetic at age 6, CKD (stage 3) diagnosed at 28 after hospital error a year before, started dialysis February '09. Listed for kidney/pancreas transplant at Ohio State & Univ. of Cincinnati.
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« Reply #16 on: August 28, 2007, 04:32:42 PM »

The choice between dialysis and transplant is a no-brainer.  During dialysis there is accelerated development of arteriosclerosis, increased risk of heart attack, damage to the nervous system, loss of bone mass, loss of muscle tissue, damage to the pituitary gland which in turn creates chaos in the body's hormonal balance, plus the danger of lethal hypotension and infection, to say nothing of the constant exhaustion from severe anemia.  Your life is also taken over by your treatment.  With a transplant, all of the physical damage associated with dialysis is avoided, and though the immunosuppressive drugs can also accelerate the development of arteriosclerosis and bone loss, their net damage is much less than that incurred by staying on dialysis.  The proof is in the pudding: transplant patients live twice as long as dialysis patients, while diabetic transplant patients live three times as long as diabetic dialysis patients.
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« Reply #17 on: August 28, 2007, 04:50:18 PM »

You can find a full table of statistics for the varying life expectancies of people with endstage renal failure according to age group, presence of absence of diabetes, and treatment modality (transplant or dialysis) in a medical text by Professor Gabriel Danovitch, Handbook of Kidney Transplant (Philadelphia: Lippincott, 2001) p. 16.  His data are based on a huge statistical survey of many patients over many years and show that for the average patient without diabetes, a transplant doubles the life expectancy.  For a patient with diabetes, a transplant triples the life expectancy.  Thus a diabetic man in his forties on dialysis can expect to live 8 years on average, while a diabetic in his forties who gets a transplant can expect to life another 24 years.  The life expectancies of dialysis patients overall are remarkably similar among age groups, which is surprising, since younger people normally have a much longer remaining life expectancy than older people.

Thanks, good post.

Is there data on that table comparing dialysis in center 3x weekly, and home dialysis 6x weekly?  I would expect the survival rate of those on home dialysis 6x a week to be much nearer that of transplants.
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Lorelle

Husband Mike Diagnosed with PKD Fall of 2004
Fistula Surgery  1/06
Fistula Revision  11/06
Creatinine 6.9  1/07
Started diaysis 2/5/07 on NxStage
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« Reply #18 on: August 28, 2007, 05:28:10 PM »

well, the research I've been doing shows that the mortality rate among hep C patients who have kidney failure and get a transplant is much higher than those who do not have hep C.
not everyone on dialysis is subject to the exhaustion that stauffenburg mentions.
in my own experience, when i first started dialysis, i was doing hemo at a local dialysis clinic. after the sessions (three per week) i was exhausted and had to rest or lie down for up to two hours afterwards.
on P/D, that changed for me when i switched to the double-bag dialysis. now, on the baxter cycler, i find my energy is pretty consistent and exhaustion is rare, for me. i'm not running marathons, but i'm not draggin my tail like i was on hemo, at least. i can understand why stauffenburg feels the way he does though, being a transplant recipient would make him more supportive of the procedure, of course.
its not easy, getting an unbiased view, but that's the nature of things, i suppose. you can say the facts speak for themselves. but, it all depends on who you're talking to, their experience, their beliefs, and one can only toss the dice and hope, in the end.
i'm not ready to toss the dice. not yet.

love

~LL~

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« Reply #19 on: August 28, 2007, 05:38:43 PM »

The choice between dialysis and transplant is a no-brainer.  During dialysis there is accelerated development of arteriosclerosis, increased risk of heart attack, damage to the nervous system, loss of bone mass, loss of muscle tissue, damage to the pituitary gland which in turn creates chaos in the body's hormonal balance, plus the danger of lethal hypotension and infection, to say nothing of the constant exhaustion from severe anemia.  Your life is also taken over by your treatment.  With a transplant, all of the physical damage associated with dialysis is avoided, and though the immunosuppressive drugs can also accelerate the development of arteriosclerosis and bone loss, their net damage is much less than that incurred by staying on dialysis.  The proof is in the pudding: transplant patients live twice as long as dialysis patients, while diabetic transplant patients live three times as long as diabetic dialysis patients.

I believe two other risk factors with a transplant are skin cancer and developing Type 2 diabetes.

well, the research I've been doing shows that the mortality rate among hep C patients who have kidney failure and get a transplant is much higher than those who do not have hep C.
not everyone on dialysis is subject to the exhaustion that stauffenburg mentions.
in my own experience, when i first started dialysis, i was doing hemo at a local dialysis clinic. after the sessions (three per week) i was exhausted and had to rest or lie down for up to two hours afterwards.
on P/D, that changed for me when i switched to the double-bag dialysis. now, on the baxter cycler, i find my energy is pretty consistent and exhaustion is rare, for me. i'm not running marathons, but i'm not draggin my tail like i was on hemo, at least. i can understand why stauffenburg feels the way he does though, being a transplant recipient would make him more supportive of the procedure, of course.
its not easy, getting an unbiased view, but that's the nature of things, i suppose. you can say the facts speak for themselves. but, it all depends on who you're talking to, their experience, their beliefs, and one can only toss the dice and hope, in the end.
i'm not ready to toss the dice. not yet.

love

~LL~

This forum is a good place to hear opinions on both sides regarding dialysis and transplant. Both are treatments for renal failure, and all a patient can do is make an informed decision about the type of treatment they receive.
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Admin for IHateDialysis 2008 - 2014, retired.
Jenna is our daughter, bad bladder damaged her kidneys.
Was on in-center hemodialysis 2003-2007.
7 yr transplant lost due to rejection.
She did PD Sept. 2013 - July 2017
Found a swap living donor using social media, friends, family.
New kidney in a paired donation swap July 26, 2017.
Her story ---> https://www.facebook.com/WantedKidneyDonor
Please watch her video: http://youtu.be/D9ZuVJ_s80Y
Living Donors Rock! http://www.livingdonorsonline.org -
News video: http://www.youtube.com/watch?v=J-7KvgQDWpU
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« Reply #20 on: August 28, 2007, 06:07:12 PM »

Hubby has been on dialysis for 10 years - pd , in center hemo and home hemo nocturnal - never had the severe lack of energy that people talk about.  has no other health conditions.  Transplant probably is a better option in some cases but we have seen a few people who have had a transplant and don't feel as well as hubby does now. Some people we have seen are doing really well.  Depends on the person and how they react to the drugs. Hubby's philosophy is this is working well for him so why rock the boat and maybe have reactions to the drugs and be worse off.  He says he will consider a transplant when and if he starts to be sick on hemo. Right now he has just a smuch energy as a "normal" person. 
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« Reply #21 on: August 28, 2007, 06:23:14 PM »

PaddleBear -I am a diabetic and been in-center for a little over a year. If you haven't started dialysis yet and have a willing donor your nuts not to take them up on it. I'm O+ and can't even get a family member to come forward. Don't throw the chance away, you really don't want to start dialysis....Boxman (my opinion)
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« Reply #22 on: August 29, 2007, 02:56:49 AM »

When i was on dialysis the first time my brother came forward before i even started. However the powers to be stated, " I think it is better that you are on dialysis for a while before your brother gives you one of his kidneys. " Yeah right, someone got a little pocket money on that one. I don't know i could get run over by a banana truck today and not have to worry about dialysis again.
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i am a 51 year old male on dialysis for 3 years now. This is my second time. My brother donated a kidney to me about 13 years ago. I found this site on another site. I had to laugh when i saw what it was called. I hope to meet people from all over to talk about dialysis.
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« Reply #23 on: August 29, 2007, 05:23:40 AM »

I believe two other risk factors with a transplant are skin cancer and developing Type 2 diabetes.

Well, I've already got type 1 diabetes, so the risk if type 2 has already been eliminated, and I've never burned or even been able to get a sun tan a day in my life, so I'm pretty sure that eliminates the skin cancer too!  ;)
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I HAVE DESIGNED CKD RELATED PRODUCTS FOR SALE TO BENEFIT THE NKF'S 2009 DAYTON KIDNEY WALK (I'M A TEAM CAPTAIN)! CHECK IT OUT @ www.cafepress.com/RetroDogDesigns!!

...or sponsor me at http://walk.kidney.org/goto/janetschnittger
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Diagnosed type 1 diabetic at age 6, CKD (stage 3) diagnosed at 28 after hospital error a year before, started dialysis February '09. Listed for kidney/pancreas transplant at Ohio State & Univ. of Cincinnati.
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« Reply #24 on: August 29, 2007, 05:28:04 AM »

I'm O+ and can't even get a family member to come forward.

That's so sad!   :'(  I'm so sorry to hear that! What about friends?

 :grouphug;
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I HAVE DESIGNED CKD RELATED PRODUCTS FOR SALE TO BENEFIT THE NKF'S 2009 DAYTON KIDNEY WALK (I'M A TEAM CAPTAIN)! CHECK IT OUT @ www.cafepress.com/RetroDogDesigns!!

...or sponsor me at http://walk.kidney.org/goto/janetschnittger
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Diagnosed type 1 diabetic at age 6, CKD (stage 3) diagnosed at 28 after hospital error a year before, started dialysis February '09. Listed for kidney/pancreas transplant at Ohio State & Univ. of Cincinnati.
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