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Author Topic: Confession Time!  (Read 13429 times)
BASSMAN
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« on: January 28, 2008, 05:28:16 PM »

I think I am ready to take a pounding :boxing;

This is my next question.  How do you feel about a person that says "I am just going to live my life, eat what I want, do what I want and let whatever happens, happen and deal with it then".  Like I said in an earlier thread,  I have lived my life without worrying about it so far and yes now I am getting concerned and the reality is sinking in.

Am I a disgrace?

Should I be doing everything I can to maintain what kidney function I do have?   Or, just keep on doing what I want until I have no choice and accept whatever fate befalls me.  I figure my quality of life is going south no matter what I do.

Now the big disgrace,  I smoke,  I have smoke since I was 13 and I am now 46.  Do the math.
I drink often and I am not in denial,  alcohol does not rule my life, I am not an alcoholic so lets try not to go there. 

I am however addicted to nicotine and I have tried quitting more times than I can remember.  I abstained for various amounts of time (3 months was the longest).

Did you have these feelings or do you have them now?

Does anyone care to share there stories?  If not, I understand.

Have I lost the respect of you guys already?

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Membranous Glomerulonephritis confirmed by biopsy in  April 1989
currently Stage IV CRF
GFR 18
Creatinine 3.9
AV fistula (radiocephalic) placed September 24, 2009
Began transplant evaluation November 11, 2009
Completed transplant eval and approved for transplant February 10, 2010
Received confirmation letter I am on the UNOS list February 18, 2010
Wife began donor testing March 1, 2010
Received living donor preemptive transplant from spouse July 22, 2010

http://www.caringbridge.org/visit/phillipjohnsen
del
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« Reply #1 on: January 28, 2008, 05:37:49 PM »

You have not lost my respect.   :beer1;
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jbeany
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« Reply #2 on: January 28, 2008, 05:38:48 PM »

No loss of respect here.  We all struggle with quality of life issues - is it worth it to keep doing what we're doing when we're on dialysis?  Did we really want to start?  If we're here on a regular basis, then we've picked dealing with it to giving up, but that doesn't mean it's an easy choice.  Some days, when I'm sick and tired and the bills are stacking up I wonder if I was crazy to think I could do this, but mostly, it's still worth the effort.

As for the smoking - well, you do say you've tried to quit.  It's not an easy thing to do.  You have to decide for yourself if changing your lifestyle is worth the possible long term benefits.  There are things that are recommended to slow the progression of kidney disease.  I kept my head in the sand for a long time after I was diagnosed, and didn't do any research about things like low protein diets.  I wonder now if it would have helped, and it is something I regret.  You might want to see what information is out there, and see if any of the changes you can make would work for you.  At least that way you would be making an informed decision, even if you don't make any changes.
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"Asbestos Gelos"  (As-bes-tos yay-lohs) Greek. Literally, "fireproof laughter".  A term used by Homer for invincible laughter in the face of death and mortality.

BASSMAN
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« Reply #3 on: January 28, 2008, 05:42:50 PM »

Thanks del!
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Membranous Glomerulonephritis confirmed by biopsy in  April 1989
currently Stage IV CRF
GFR 18
Creatinine 3.9
AV fistula (radiocephalic) placed September 24, 2009
Began transplant evaluation November 11, 2009
Completed transplant eval and approved for transplant February 10, 2010
Received confirmation letter I am on the UNOS list February 18, 2010
Wife began donor testing March 1, 2010
Received living donor preemptive transplant from spouse July 22, 2010

http://www.caringbridge.org/visit/phillipjohnsen
BASSMAN
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« Reply #4 on: January 28, 2008, 05:48:12 PM »

No loss of respect here.  We all struggle with quality of life issues - is it worth it to keep doing what we're doing when we're on dialysis?  Did we really want to start?  If we're here on a regular basis, then we've picked dealing with it to giving up, but that doesn't mean it's an easy choice.  Some days, when I'm sick and tired and the bills are stacking up I wonder if I was crazy to think I could do this, but mostly, it's still worth the effort.

As for the smoking - well, you do say you've tried to quit.  It's not an easy thing to do.  You have to decide for yourself if changing your lifestyle is worth the possible long term benefits.  There are things that are recommended to slow the progression of kidney disease.  I kept my head in the sand for a long time after I was diagnosed, and didn't do any research about things like low protein diets.  I wonder now if it would have helped, and it is something I regret.  You might want to see what information is out there, and see if any of the changes you can make would work for you.  At least that way you would be making an informed decision, even if you don't make any changes.

Thanks!

I guess I am going to start going through the head trips now.  I was able to go about my business and not think about it up until now.  I have 27% function right now but I am really feeling tired all the time.  I cannot imagine what you feel like right before you go on dialysis. 
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Membranous Glomerulonephritis confirmed by biopsy in  April 1989
currently Stage IV CRF
GFR 18
Creatinine 3.9
AV fistula (radiocephalic) placed September 24, 2009
Began transplant evaluation November 11, 2009
Completed transplant eval and approved for transplant February 10, 2010
Received confirmation letter I am on the UNOS list February 18, 2010
Wife began donor testing March 1, 2010
Received living donor preemptive transplant from spouse July 22, 2010

http://www.caringbridge.org/visit/phillipjohnsen
kellyt
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« Reply #5 on: January 28, 2008, 05:58:02 PM »

This site is totally about support.  You and you alone know what's best for you.  True, smoking and drinking are not healthy.  But it's all about you and your wishes.  If I were in the same place as you I wouldn't want to be told that I HAD to do A, B or C.  Do your research and make an educated decision.  Good Luck to you!   :grouphug;
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1993 diagnosed with glomerulonephritis.
Oct 41, 2007 - Got fistula placed.
Feb 13, 2008 - Activated on "the list".
Nov 5, 2008 - Received living donor transplant from my sister-in-law, Etta.
Nov 5, 2011 - THREE YEARS POST TRANSPLANT!  :D
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« Reply #6 on: January 28, 2008, 06:05:41 PM »

We ALL have stuff that we have to overcome.  I appreciate your honesty.  some of us are not as careful as we should be with our liquid intake, for instance, or those high cholesterol foods that taste so good!  But for the sake of our loved ones, we ALL need to take a good look at what we are doing and see how we can best improve, for the sake of our quality of life.
That is how I look at it.
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"To be found in Him, not having a righteousness of my own ...but that which is based on faith"



I LOVE  my IHD family! :grouphug;
lola
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« Reply #7 on: January 28, 2008, 06:23:53 PM »

Bassman you still have respect man. Smoking has been a huge thing for Otto to stop, he started only a few tears ago(fool) and now see's how hard it is to stop. He has to start some new meds and they told him NO SMOKING but declined any products to help(he's sick of meds) so we'll see how he does this time around, quit beatting yourself up. :cuddle;
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BASSMAN
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« Reply #8 on: January 28, 2008, 06:26:44 PM »

Thanks!

I think I am getting the vibe of this place.  I may make the changes that I need to.  I am having the inner struggle right now.  I am not sure I can muster the courage to do them.  Your replies do help.  You may make me see things in a different light, but then again,  I may just be stubborn and not take your good advice.

It is nice to know that I won't be shunned if I see things in a different perspective.
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Membranous Glomerulonephritis confirmed by biopsy in  April 1989
currently Stage IV CRF
GFR 18
Creatinine 3.9
AV fistula (radiocephalic) placed September 24, 2009
Began transplant evaluation November 11, 2009
Completed transplant eval and approved for transplant February 10, 2010
Received confirmation letter I am on the UNOS list February 18, 2010
Wife began donor testing March 1, 2010
Received living donor preemptive transplant from spouse July 22, 2010

http://www.caringbridge.org/visit/phillipjohnsen
st789
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« Reply #9 on: January 28, 2008, 06:29:15 PM »

This precisely is the place where renal community can share their thoughts and feelings.

I think we all have emotional or issues to deal with.  I myself can overstuffing with foods to ease the pain.

Informed decisions will help us in the long run.
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« Reply #10 on: January 28, 2008, 06:53:43 PM »

Perfect topic BASSMAN. I don't smoke or drink but I do love my candy and I love to eat. Way more than I should, I go through periods of time when I realize what I'm doing is hurting myself in the long run but yet I still do it, then there are other times when I really do try to do the right thing for my health.

Bottom line I think it is habit and depression VS knowledge andmotivation.
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George Jung
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« Reply #11 on: January 28, 2008, 08:27:24 PM »

I don't know man.....life on dialysis sucks.  If you smoke and drink you will not be eligible for a transplant so unless you are just not going to receive a treatment you may want to be proactive.  Give yourself some credit and believe in yourself and you can make any lifestyle change you wish.    I wouldn't say you are a disgrace for whatever you choose to do but I also don't necessarily think it is fate that will be responsible.  You feel like your quality of life is going south anyway....only as far south as you let it take you.  I am in better physical shape today than I probably have been all of my life.  I could be alot worse off than I am had I decided to not give a shit.  I think by you asking this question that you already know what you should do.  I know that some will be on dialysis until the end but very few I think would have chosen that, especially at  27%.
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« Reply #12 on: January 28, 2008, 08:31:52 PM »

Quitting smoking is a lot like losing weight. It seems impossible. I think everyone feels the way you do at some time or another. 
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Ivanova: "Old Egyptian blessing: May God stand between you and harm in all the empty places you must walk." Babylon 5

Remember your present situation is not your final destination.

Take it one day, one hour, one minute, one second at a time.

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« Reply #13 on: January 28, 2008, 08:42:55 PM »

Bassman,
starting to get concerned and reality sinking in for you is a good way to start out. Do everything you can, all your best to maintain your kidney function, once you lose it, there's no looking back. Do it, not for yourself but for the people you love and care about. With my Mom, there's a knock of guilt somewhere, that we could have somehow prolonged her kidney function, if only I have been more aware of what ESRD is. I could have educated my Mom better, only if...... and I really hate the if's.... :banghead; My Mom started smoking when she was 18 yrs. old. she stopped when she was on her 60's, still the long years of smoking has a lot of bearing on how she is now. It's tough to stop smoking, but you can try and come out a winner. The best point is you very well know and understand by now what ESRD does on your life. The decision is yours, but I really admire your honesty. There is still time...
love,
cris
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there is no greater love than this: "that a man lays down his life for his friend"
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« Reply #14 on: January 28, 2008, 10:12:30 PM »

When I quit smoking it was so hard. It really is addicting, and smoking was so comforting to me. I think it was harder than quitting drinking or drugs. I suffered for the first week, changed my mind hourly but I stuck with it. They say you have to not just quit, but you've gotta "stay stopped." The only way I could commit to it is by thinking I am postponing my last cigarette, one day at a time. So, if I want, I could smoke tomorrow. Just not today. Somehow that has worked, day by day, for 26 years so far. I can't guarantee I won't smoke again, but I choose not to. Besides, I felt like a fool being addicted to a plant.

My mom stopped after about 55 years of smoking. She broke her ankle and knee and had to be hospitalized. They don't allow smoking and she was in for 5 days, so they put her on the patch. That lasted a couple of weeks, then she didn't crave it anymore. Honestly I never thought she'd ever quit. She went through chemo for lymphoma about 4 weeks after quitting cigarettes. Amazing.

I wish you the best of luck with whatever you decide. Renal failure is so stressful, it's hard to face a lot of changes in your diet and routine too. Take care!  :cuddle;
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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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Life's a bitch and then you go on dialysis!

« Reply #15 on: January 29, 2008, 05:27:44 AM »

Bassman I am ashamed to say that yes I still smoke. I have tried giving up but never succeeded although for the last ten years I've been very strict about how many I smoke per day which is about 5 or 6. If you work as I still do, try not to take any cigarettes to work, leave them at home that way your intake for the day will be much less. Just maybe  smoke in the evening.   :grouphug;
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Ken
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« Reply #16 on: January 29, 2008, 05:54:46 AM »

hey there is hope for quitting- I was what one would call a 'militant smoker'- three to four packs a day, and damn you if you tried to interfear-BUT then came my husbands accident and dialysis, we quit together- I knew he had to quit, and wouldn't if I didn't- I was so afraid for him- then he was so sick the first year...I wavered but I never actaully had a ciggerette, although I did partake in some other smoking material for the first six months, now I have quit that too! You will just do it when your ready. and


you seem concerned about being 'shunned'- people here at IHD might disagree with you very strongly- but it doesn't degenerate into personal insults-free to disagree, and there sure are a wide variety of opinions available on most any debate- check out the God threads lol- and you might feel judged sometimes by some comments- your always free to respond...or not. This is the greatest place to come when your feeling sad/down/tired/angry/hopeless.....the same people that disagreed with you yesterday will be offering condolences and cheerful smilies today. I have had some serious disagreements here- and the next day the same people who disageed are saying 'way to go' when something good happens.

so  :clap; :2thumbsup; :rofl; :grouphug; :cuddle; :angel; :popcorn; 8) ::) :o :secret; :urcrazy; :bandance; :bandance; :bandance;
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Jack A Adams July 2, 1957--Feb. 28, 2009
I will miss him- FOREVER

caregiver to Jack (he was on dialysis)
RCC
nephrectomy april13,2006
dialysis april 14,2006
paris
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« Reply #17 on: January 29, 2008, 06:44:13 AM »

Sending lots of care, support and love your way :grouphug;   This is family; dysfunctional, loving, different opinions--but we are united and bound by the same disease.  We get mad and hurt at times, but we love each other in a way some could never understand.  Look at how long some of us have been members and you'll understand that we are here for the long haul.   You won't be "shunned". you will be embraced.     As for smoking, we are here if you need support in quitting----but we aren't here to judge you.  You have found a great place to be supported and loved.
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It's not what you gather, but what you scatter that tells what kind of life you have lived.
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« Reply #18 on: January 29, 2008, 09:46:28 AM »

Difficult one .. i stopped drinking just like that (only social drinks and not very much) but as for smoking ..hmm i still smoke. I think the best thing to do is strike a happy balance, with regards diet , fluid, etc . To stick completley to all the renal restrictions is a miserable life, and from time to time you just want to rebel.I dont think there is one person on here who hasnt broke the rules at some point. I understand that the advice we get is supposedly for our own good, but you need more than a bland diet and fluid restrictions in life! You will find at some point that if you ignore your fluid intake, your body will let you know!! It really is everything in moderation , just somethings more than others!
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OH NO!!! I have Furniture Disease as well ! My chest has dropped into my drawers !
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me and my donor Joyce

« Reply #19 on: January 29, 2008, 10:15:26 AM »

I know how you feel Bassman.  I started smoking when I was 13.  When the doctor told me I had to quit smoking to get a kidney transplant I thought I was going to faint!  About 1 month later I quit cold turkey.  I have been quit since Dec. 12, 2006.  It was one of the hardest things I have ever had to do, but worth it.
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Born with one kidney 1972
Ureter re-constructured 1975 (reflux had already damaged the kidney)
Diagnosed and treated for high blood pressure 2000
Diagnosed ESRF October 2006
Started dialysis September 2007
Last dialysis June 4, 2008
Transplant from my hero, Joyce, June 5, 2008
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« Reply #20 on: January 29, 2008, 11:03:48 AM »

I've never smoked, but I've heard how hard it can be to quit. I'm not here to judge you or anyone else. If you want support and encouragement to quit, you have it! If you decide now isn't the right time for you to quit, it doesn't mean I'll think less of you. I can relate to your attitude about living for today. It's about maintaining a balance between a healthy mental state and a healthy medical state. What's the point of being perfectly healthy if you sacrifice everything in life that makes you happy?
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Deanne

1972: Diagnosed with "chronic kidney disease" (no specific diagnosis)
1994: Diagnosed with FSGS
September 2011: On transplant list with 15 - 20% function
September 2013: ~7% function. Started PD dialysis
February 11, 2014: Transplant from deceased donor. Creatinine 0.57 on 2/13/2014
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« Reply #21 on: January 29, 2008, 12:31:34 PM »

I think you should review your options, as just because your heading south now, don't mean you can't slow it down by being proactive and changing your diet or other habits. I wish you good luck in whatever you deicide though.  :grouphug;
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Live Donor Transplant From My Mom 12/14/1999
Perfect Match (6 of 6) Cadaver Transplant On 1/14/2007
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« Reply #22 on: January 29, 2008, 12:45:56 PM »

The standard medical answer -- that you should live your life like a robot and perform every action, no matter how unpleasant or stressful, that is necessary to maximize your health potential -- ignores the very important point that there can be great human happiness in being self-indulgent, spontaneous, and indisciplined.  The maximum value you can get out of life is not necessarily achieved by going through all the pain you have to endure to get the full gain of optimal health, but is instead determined by a cost-benefit analysis of the pleasure of not being self-disciplined versus the pleasure of being healthier.  Doctors act as though all the value is just on the health side of the equation, which it is not.

As for smoking, scientific studies have shown that it can have profoundly relaxing effects for some people, and serves as a psychiatric medication.  Schizophrenics have been found to have a much higher per capita use of tobacco than the rest of the population, probably because its positive psychiatric effects make it a kind of medicine for them.  So in this sense there is a mental health benefit of smoking, which has to be factored into the balance against the known health risks of smoking.  Smokers also have a much lower risk of Alzheimer's disease than non-smokers do, which is something the health police never like to tell people, and this also has to be considered.

In my own life, I have always chosen the route of self-discipline over self-indulgence in an effort to maximize health potential, but I recognize that that is not necessarily the optimal choice for everyone.  The cost-benefit analysis varies from person to person, according to how much pain they experience from self-denial, an how much pleasure they feel from indulging their present needs.  I have to assume that each person makes the rational choice for himself.
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Zach
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« Reply #23 on: January 29, 2008, 12:49:48 PM »

 :beer1;
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Uninterrupted in-center (self-care) hemodialysis since 1982 -- 34 YEARS on March 3, 2016 !!
~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
No transplant.  Not yet, anyway.  Only decided to be listed on 11/9/06. Inactive at the moment.  ;)
I make films.

Just the facts: 70.0 kgs. (about 154 lbs.)
Treatment: Tue-Thur-Sat   5.5 hours, 2x/wk, 6 hours, 1x/wk
Dialysate flow (Qd)=600;  Blood pump speed(Qb)=315
Fresenius Optiflux-180 filter--without reuse
Fresenius 2008T dialysis machine
My KDOQI Nutrition (+/ -):  2,450 Calories, 84 grams Protein/day.

"Living a life, not an apology."
BASSMAN
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« Reply #24 on: January 30, 2008, 06:34:37 PM »

The standard medical answer -- that you should live your life like a robot and perform every action, no matter how unpleasant or stressful, that is necessary to maximize your health potential -- ignores the very important point that there can be great human happiness in being self-indulgent, spontaneous, and indisciplined.  The maximum value you can get out of life is not necessarily achieved by going through all the pain you have to endure to get the full gain of optimal health, but is instead determined by a cost-benefit analysis of the pleasure of not being self-disciplined versus the pleasure of being healthier.  Doctors act as though all the value is just on the health side of the equation, which it is not.

As for smoking, scientific studies have shown that it can have profoundly relaxing effects for some people, and serves as a psychiatric medication.  Schizophrenics have been found to have a much higher per capita use of tobacco than the rest of the population, probably because its positive psychiatric effects make it a kind of medicine for them.  So in this sense there is a mental health benefit of smoking, which has to be factored into the balance against the known health risks of smoking.  Smokers also have a much lower risk of Alzheimer's disease than non-smokers do, which is something the health police never like to tell people, and this also has to be considered.

In my own life, I have always chosen the route of self-discipline over self-indulgence in an effort to maximize health potential, but I recognize that that is not necessarily the optimal choice for everyone.  The cost-benefit analysis varies from person to person, according to how much pain they experience from self-denial, an how much pleasure they feel from indulging their present needs.  I have to assume that each person makes the rational choice for himself.

Wow!

That is an excellent post.  It puts things in perspective and way better than I could ever put it in my own words.  Thanks for your reply!
Logged

Membranous Glomerulonephritis confirmed by biopsy in  April 1989
currently Stage IV CRF
GFR 18
Creatinine 3.9
AV fistula (radiocephalic) placed September 24, 2009
Began transplant evaluation November 11, 2009
Completed transplant eval and approved for transplant February 10, 2010
Received confirmation letter I am on the UNOS list February 18, 2010
Wife began donor testing March 1, 2010
Received living donor preemptive transplant from spouse July 22, 2010

http://www.caringbridge.org/visit/phillipjohnsen
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