I Hate Dialysis Message Board
Dialysis Discussion => Dialysis: Transplant Discussion => Topic started by: ToddB0130 on January 13, 2012, 07:24:49 PM
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For those of you who would like to share your 'secrets' (or for caregivers, the 'secrets' of the person you support) --- Please 'fill in the blanks'
LONG TERM (for this post) = three years or more of transplant
1) How long were you on dialysis before your transplant ?
2) Did you have a living or deceased donor ?
3) Were you multi listed for transplant ?
4) How old were you when you received your transplant(s) ?
5) How long has (or did) your transplant last ?
6) Was your transplant kidney only or kidney/pancreas ?
7) Are you diabetic ? *
*FYI - I am diabetic, so I am curious about long term dialysis for diabetics specifically as well)
8 ) List (up to) five of the most important things you credit for your long term transplant success
9) List (up to) five pieces of advice for someone who has not yet received a transplant
10) List the resources you've found most helpful in your journey since receiving your transplant (besides IHD -- HA !)
THANKS TO ALL WHO PARTICIPATE IN THIS POST. I hope to see a whole lot of responses.
If anyone would like me to edit this first message with any additional "survey" questions ...... Just IM me and I'll be happy to add to the first post so others have a chance to respond to more questions if they're out there.
THANKS AGAIN.
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I am answering these questions about my husband Gregory.
By the way, did you mean to edit that first line about what long term means? It still says "dialysis":
LONG TERM (for this post) = three years or more of dialysis
1) How long were you on dialysis before your transplant ? 1 year PD, 4 years hemo in centre
2) Did you have a living or deceased donor ? deceased
3) Were you multi listed for transplant ? no (Australian system)
4) How long has (or did) your transplant last ? 20 years so far touch wood
5) Was your transplant kidney only or kidney/pancreas ? kidney only
6) Are you diabetic ? * No
*FYI - I am diabetic, so I am curious about long term dialysis for diabetics specifically as well)
7) List (up to) five of the most important things you credit for your long term transplant success
1. definitely Exercise (walking daily),
2. keeping his weight down,
3. taking his tablets religiously
4. eating right and staying healthy
8) List (up to) five pieces of advice for someone who has not yet received a transplant
1. hang in there
2. stay fit, don't put your blood pressure up so keep your weight down
2. a transplant is not the end of your troubles, its the start of a whole new ballgame: first you have to get the transplant, then you have to get the bugger working, then you have to keep the bugger working
9) List the resources you've found most helpful in your journey since receiving your transplant (besides IHD -- HA !)
none really, (he's pretty self reliant) "the people I spoke to while I was on dialysis", the old dialysis clinic, and his renal doctors.
Another question could be age when he received transplant: 24 years old
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For those of you who would like to share your 'secrets' (or for caregivers, the 'secrets' of the person you support) --- Please 'fill in the blanks'
LONG TERM (for this post) = three years or more of transplant
1) How long were you on dialysis before your transplant ?
PD for almost 2 years
2) Did you have a living or deceased donor ?
Deceased
3) Were you multi listed for transplant ?
No
4) How old were you when you received your transplant(s) ?
24
5) How long has (or did) your transplant last ?
10.5 years and counting. My GFR is 11% right now, so I'm not sure how much longer it's gonna hang in there!
6) Was your transplant kidney only or kidney/pancreas ?
Kidney
7) Are you diabetic ? *
No
8 ) List (up to) five of the most important things you credit for your long term transplant success
Taking the Meds as prescribed, faithfully
keeping track of blood pressure and making sure it is controlled
always keeping my doctor's appts.
9) List (up to) five pieces of advice for someone who has not yet received a transplant
take the medicine!!! no matter what the side effects. and there will be side effects, some not so pleasant, but minor when you look at the big picture.
if you have weight problems, try to lose as much weight as possible pre transplant. as was stated in the prior piece of advice, the meds can make you gain weight and it may be difficult to lose.
and to piggy back off of what was said earlier, get in the habit of exercising. it is good for your body pre or post transplant. one of the major causes of death of transplant patients is cardiovascular disease, and exercise and healthy weight will help decrease your risk factors.
10) List the resources you've found most helpful in your journey since receiving your transplant (besides IHD -- HA !)
transplant support groups
i've been fortunate to have good doctors/nurses
THANKS TO ALL WHO PARTICIPATE IN THIS POST. I hope to see a whole lot of responses.
If anyone would like me to edit this first message with any additional "survey" questions ...... Just IM me and I'll be happy to add to the first post so others have a chance to respond to more questions if they're out there.
THANKS AGAIN.
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1) How long were you on dialysis before your transplant ? 11 months
2) Did you have a living or deceased donor ? Living
3) Were you multi listed for transplant ? No
4) How old were you when you received your transplant(s) ? 13
5) How long has (or did) your transplant last ? Will be 39 years this April.
6) Was your transplant kidney only or kidney/pancreas ? Kidney only
7) Are you diabetic ? * No
*FYI - I am diabetic, so I am curious about long term dialysis for diabetics specifically as well)
8 ) List (up to) five of the most important things you credit for your long term transplant success
Take your medication like its a religion
Always make time for exercise, vigorous exercise
Eat right
Weight training (for everyone)
Listen to your doctor but also listen to your body.
Basically what one would do to stay healthy.
9) List (up to) five pieces of advice for someone who has not yet received a transplant
Never give up hope
Plan for the worst but hope for the best
10) List the resources you've found most helpful in your journey since receiving your transplant (besides IHD -- HA !)
In 1973 when I got my transplant there were no resources, we played it by ear.
I've must have completed hundreds of these surveys and I can tell you there is no magic bullet, wish there was but I'm afraid there isn't. Trust me if I knew the secret I'd write a book and give it away for free. Taking the best care of yourself if the best defence you have. But even that is no guarantee.
THANKS TO ALL WHO PARTICIPATE IN THIS POST. I hope to see a whole lot of responses.
If anyone would like me to edit this first message with any additional "survey" questions ...... Just IM me and I'll be happy to add to the first post so others have a chance to respond to more questions if they're out there.
Bill
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1) How long were you on dialysis before your transplant ? First time - Preemptive transplant when I was 15. Lasted 10ish years.
2nd time- On in center hemo dialysis for 11 months
2) Did you have a living or deceased donor ? 1st-Deceased
2nd - Living nonrelated
3) Were you multi listed for transplant ? No
4) How old were you when you received your transplant(s) ? First - 15
2nd- 27
5) How long has (or did) your transplant last ? 1st - 10years
2nd - 7 months so far
6) Was your transplant kidney only or kidney/pancreas ? Kidney only
7) Are you diabetic ? * No
8 ) List (up to) five of the most important things you credit for your long term transplant success
1. Faith/Luck
2. My work
3. Great support system
4. Try to eat right and exercise, but I am not a freak or obsessed with that
5. Try not to share drinks with sick folks!
9) List (up to) five pieces of advice for someone who has not yet received a transplant
1. Realize it is not a cure
2. Talk to someone in person who has went through the surgery
3. Make sure you trust the doctors/hospital that will be doing the surgery/follow up care
4.Watch your diet because you can gain a lot of weight right after transplant
5. The sooner you start getting up and walking around after transplant the sooner you can go home
6. The removal of the stint is not to bad...just nerve racking
7. TAKE YOUR MEDS!!
10) List the resources you've found most helpful in your journey since receiving your transplant (besides IHD -- HA !)
1. My doctor
2. And my own research through the National Kidney Foundation
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Hey Todd, I don't think I have anything new to add to this, just that 3 years for a transplant is setting the bar way low. Half of recipients will still have a working cadaver transplant at around 12 years and a working live donor transplant at around 25 years. I have only just started to find my moorings and I'll be 2 years post in March.
I think there are only 2 reasons why my first transplant lasted so long: I was very young and very lucky. You wouldn't want to be very young when you need a transplant so no loss there and you're on here making your own luck by exploring all of your options. Stay the course. :)
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1) How long were you on dialysis before your transplant ? 1 year
2) Did you have a living or deceased donor ? Living donor - half cousin
3) Were you multi listed for transplant ? No, one center only
4) How old were you when you received your transplant(s) ? 37
5) How long has (or did) your transplant last ? 9 years and counting (knock on wood)
6) Was your transplant kidney only or kidney/pancreas ? PAK Pancreas (2008) after Kidney (2002)
7) Are you diabetic ? * Not any more
*FYI - I am diabetic, so I am curious about long term dialysis for diabetics specifically as well)
8 ) List (up to) five of the most important things you credit for your long term transplant success
1. Keeping hydrated
2. Purell - keeping the germs away
3. Taking pills religiously
9) List (up to) five pieces of advice for someone who has not yet received a transplant
1. Keep fit before hand, it makes the surgery so much easier
2. Try to relax about the meds. They sound scary, but aren't that bad
3. Don't discount family as donors because you are worried for them. They are worried for you too.
10) List the resources you've found most helpful in your journey since receiving your transplant (besides IHD -- HA !)
Local kidney support group run by the social work portion of the nephrology department.