Confession Time!

[BASSMAN]

Thanks to all of you again!!!

This is a struggle that I have to confront myself.  Only I can make the changes but it is great to get you guys opinions on the matter!!!

I wish I could reply personally to each and everyone of you but I just don't have that much free time at the moment.  I do appreciate your comments and taking the time to share them with me.  If I didn't personally reply to yours, please know that it was read and considered and not wasted time.

sincerely

[Sunny]

          Bassman, you have done so well with failing kidneys all these years. I too am at about 20-30% function like you. I wanted to tell you that it's not too late to try and squeek a few more years out of those kidneys. It's worth a try to make a few changes within your abilities. I hope your kidneys will provide for you for many years yet.

[RichardMEL]

BASSMAN - I think your that you acknowledge your issues and have a fair idea what you might need to do is half the battle. Some people don't even get that far. For example, there's a guy in my unit who started oh... 2-3 months ago. He's a big boy - he loves his food.. and he loves to smoke. He doesn't drink booze, but he's not shy of other fluids either (he loves pepsi!). Now I look at him, coming in way overloaded with fluid every time, stinking like an ashtray and PROUD (no seriously!) of his belly and well i sit and wonder because I *know* he's not doing himself any favours - specially now that he's on dialysis. He won't be on the list anytime soon and he could face other complications. He seems in total denial of his situation (it's a wonder he even shows up to dialysis)... now some can argue that he's making the most of his life while on dialysis... and you can't really argue with that. For me personally I do all i can to keep my fluids under control, have a reasonable diet (trust me, the dieticians would hate me... but my labs are OK so I must be doing SOMETHING ok!) and everything because I want a longer term hopefully good outcome for me - as in a transplant that survives as long as possible for me to have a reasonably normal life.

I can't and won't tell you what to do. I know when I had ~20% of function and knew dialysis was looming, but not sure when I set out to do as much as I could with my life - travel places I wanted and yes indulge where I could (and I still do to a much lesser extent now I am on dialysis... I mean life is as much about living with some form of quality as well as looking after yourself I reckon) and try and fit in all the things I wanted to do while I could since a life on dialysis can be very limiting (specially on the sorts of things I wanted to do like travel to Russia and so on).

Since you know there are things you could improve to increase your health and overall outcome with regard to CKD I'd perhaps suggest a moderate move to a healthier lifestyle. I don't mean cut it out cold turkey... but I mean having a think "Do I *need* to have that extra drink or smoke?" and generally setting yourself on a path that will help YOU when/if the time comes. Since you've asked the question it sounds like at least part of you wants to get into a healthier lifestyle and it sounds like doing it slowly might be a good way to get in... set some goals (eg: in 6 months I want to cut down my number of cigarettes smoked in a day by half or something).

Just additionally apart from that part of things I'd strongly suggest you do all you can to ENJOY your life while you can. Travel... get out... try and live while you can since once on dialysis you may not have the energy or freedom to do some things... and you may regret later if you don't try now.

All the best.

[paris]

Hi Bassman, I'll add my two cents worth    I was diagnosed when my function was at 30%.  Dr. said I would be on dialysis in 6-12 months.  The first year, my function dropped 10%, but over the next 3 years it has gone down only 5% and I have been holding at 15% for 2 years.  I do everything the doctors tell me. I changed my diet, but I do allow a few quilty pleasures along the way.  Every time the neph sees me he is amazed.  He can't believe how well I keep doing.  Now, I have all the problems like vomitting, sleeplessness, anemia,extreme fatigue--all the normal stuff for ESRD.  But, during this repreive from dialysis, I am living.  Went on a Hawaiian cruise last January (I swam with sea turtles!), IHD Vegas meet up in October, trips to visit with family, days at the beach-----just enjoying and appreciating where I am and what I can do.  I have never been as good to my body as I am now.  There are days I feel like crap and I am mad at the situation, but it is my life and I want to do everything I can to add just one more day.  So, we are here to help with what ever decision you make. We want you here for a long time.     If you want to stop smoking, you will find lots of support and love from all of us here.   We all want the best for you

[stauffenberg]

While I certainly would agree that there is a lot to be gained from living a healthy lifestyle in order to delay the onset of complete renal failure, I wonder if the arguments for healthy living through extreme self-discipline are very convincing for people who are already on dialysis?  Dialysis and chronic renal failure cause such catastrophic and continuing damage to the body that doing everything possible to maintain your health in such circumstances can be like remembering to turn off the garden hose in the midst of a flood, just to keep the water level a tiny bit lower.  For a young, healthy person not smoking, not becoming obese, and consuming a low fat diet may add a decade to the expected lifespan.  But given that a diabetic in his forties who is on dialysis has a life expectancy of only 8 years, what is he going to get out of all the added misery of imposing extreme self-discipline in order to be as healthy as possible?  Perhaps an extra 6 months of extremely low quality existence?  In a flood, making terrific exertions to turn off the garden hose may cost more effort than it is worth.

[paris]

Stauffenberg, Bassman had posted in his intro that he was at 27% .  We all know where our disease is taking is, but I just wanted to offer my thoughts on my experience.  Healthy living can't hurt, especially if your are trying to add time before starting dialysis.   

[BASSMAN]

You guys rock!

The insight you have given is better than anyone could ever get from a therapist.
I have pondered all of this.

Sunny, paris, RichardMel,

You guys offer great words of inspiration.  You make me want to give it a go to do the things I need to do.

Stauffenberg,

I also see your point, though I am not in kidney failure, I have often thought about what the future holds and think "whats the use?" in trying to do everything by the book. 


As the reality continues to set in of what my future will be,  I will probably start to make the changes.  I am trying to muster the determination and give quitting smoking another go.  I know that is the single most important health improvement I can make. 

Thanks Guys!

[George Jung]

As the reality continues to set in of what my future will be,  I will probably start to make the changes.  I am trying to muster the determination and give quitting smoking another go.  I know that is the single most important health improvement I can make. 

There is a relatively new aide available for quitting smoking that has a 50% success rate.  I personally know of a couple of people who used it and are smoke free today.  It's called Chantix if you're interested.  I believe giving up the cigarettes cold turkey would be the best thing you can do for yourself.  Take care.

[Psim]

As the reality continues to set in of what my future will be,  I will probably start to make the changes.

You are awesome, Bassman. Getting a ESRD diagnosis is alot to wrap your head around, but it sounds like you are coming to terms with it bit by bit. You always have an ear here at IHD when you need to get pissed at the hand you were dealt... and then pick up the cards and play on.

[kellyt]

Questions:   If he gives up smoking for the most part and just smokes "socially" - meaning maybe 2 to 3 cigs. a month max or even less - obviously that would assist in better health (my opinion).  But let's say he gets on "the list" and gets the call some night... will a blood test show enough nicotine in his system to cancel the transplant or be removed from "the list"?

Once you're listed do they test for nicotine routinely?   

[paris]

My thought is, people work so hard to actually get on the "list" and many of our members aren't eligible to be listed----why would one do anything to jeopardize that privilege?  There are many more people waiting for a kidney than there will ever be ones available, so I am doing everything to stay on the list and play by the rules.  You do have routine blood work done and they do contact your local neph.  Why would you want to chance not getting the kidney after going through all the testing, time and money?

[kellyt]

Those are my thoughts, as well Paris.  I would be devastated to be kicked off the list for ANY reason.  Especially since I haven't officially been placed "on" the list as of yet!       Also, I would feel horrible - no, worse than horrible - if I treated my new donated kidney bad and lost it!  Especially if it comes from my awesome brother!!!!!!!

[paris]

Kellyt--   It really is an honor to receive someone's organ and I hope the time comes quickly for your turn.  BTW, your brother IS awesome!!

[boxman55]

If you guys smoke and need a kidney please try and quit. I smoked since I was in 7th grade. Cranked out 2 packs a day in the later years. On August 14th 2006 I had to go in the ICU for 5 days that is when I stoppped smoking and have not had one since. 17 months and 18 days but who's counting...Box

[okarol]

If you guys smoke and need a kidney please try and quit. I smoked since I was in 7th grade. Cranked out 2 packs a day in the later years. On August 14th 2006 I had to go in the ICU for 5 days that is when I stoppped smoking and have not had one since. 17 months and 18 days but who's counting...Box

  Good for you Boxman, that's quite an achievement for a hardcore smoker!

[CW]

Bassman I feel like I have some understanding of your situation and let me tell you how I overcame it (or how it overcame me)

I really did not care about myself when I settled into dialysis. I am also a very self indulgent person who loves pleasure I would drink tall cold delicious glasses of whatever I wanted all the time I smoked cigarettes and I ate whatever I wanted I thought I might as well have fun being that everthing else sucked so bad. But then I started to think even if I do not mind the suffering I will be enduring later as a consequence of my actions who else would suffer with me? I decided it was not fair for me to take them down the road of destruction with me. After that I realized that I was worth taking care of and I did have the strength to show restraint. It felt so good to feel a sense of worth even if it was only to me. You are worth it! You truly are, we all are.

I also thought about the people who would be worse off if I was not here anymore (which is a very real consequence of the behaviors we both talked about). No, I don't have a lot of money to give I cant always get up to play and it does cost a lot to keep me alive; but I do have all my love to offer and I can give the benefit of my experiences to others. I realized I have a lot more than that to offer the world and I will always have something to offer, we both do and I am sure of it. Please take care of yourself you are worth it! Maybe one day we can go cheat together but just a little.

I must say I have never been the optimistic type as a matter of fact I am a pessimistic cynic who can barely trust himself; but I do believe even with CKD we have a meaningful contribution to make

[kellyt]

Bassman I feel like I have some understanding of your situation and let me tell you how I overcame it (or how it overcame me)

I really did not care about myself when I settled into dialysis. I am also a very self indulgent person who loves pleasure I would drink tall cold delicious glasses of whatever I wanted all the time I smoked cigarettes and I ate whatever I wanted I thought I might as well have fun being that everthing else sucked so bad. But then I started to think even if I do not mind the suffering I will be enduring later as a consequence of my actions who else would suffer with me? I decided it was not fair for me to take them down the road of destruction with me. After that I realized that I was worth taking care of and I did have the strength to show restraint. It felt so good to feel a sense of worth even if it was only to me. You are worth it! You truly are, we all are.

I also thought about the people who would be worse off if I was not here anymore (which is a very real consequence of the behaviors we both talked about). No, I don't have a lot of money to give I cant always get up to play and it does cost a lot to keep me alive; but I do have all my love to offer and I can give the benefit of my experiences to others. I realized I have a lot more than that to offer the world and I will always have something to offer, we both do and I am sure of it. Please take care of yourself you are worth it! Maybe one day we can go cheat together but just a little.

I must say I have never been the optimistic type as a matter of fact I am a pessimistic cynic who can barely trust himself; but I do believe even with CKD we have a meaningful contribution to make

That pretty much says it all!      

[stauffenberg]

Smokers with a kidney transplant have double the risk of cardiovascular events of those who don't smoke, which is about what you would expect. (F. Vadles- Canedo, "Incidence of Cardiovascular Events" Transplant Proceedings (2007) 39 (7) 2239-2241.  But while pre-transplant smoking increases the risk of loss of the transplanted kidney, it does not increase the risk that it will be lost through rejection, and there is no evidence that stopping smoking after getting a transplant helps the new kidney survive. (A. Kheradmand, "The Role of Pretransplant Smoking" Urology Journal (2005) 2 (1) 36-39.  Another bit of surprising news is that thinner patients have a lower survival rate on dialysis than fatter ones.  (C. P. Kovesdy, "Paradoxical Association between Body Mass Index and Mortality" American Journal of Kidney Disease (2007) 49 (5) 581-591.)  So staying healthy for the new kidney does not always require what you might think it does.   

[George Jung]

So staying healthy for the new kidney does not always require what you might think it does.

I don't think the "no smoking rule" pre or post transplant is all about loosing the function/graft directly as much as it is about giving the transplant to someone who generally makes good health wise decisions.  If you are an abuser of any substance you will not be granted the special gift that a transplant is.  Correct me if I am wrong.  If I am not mistaken I am pretty sure someone once told me that they would discourage me riding motorcycles after a transplant.  I didn't say it then, nor will I ever say it but they can stick it where the sun don't shine on that one.

[okarol]

George, I believe that motocross and dirt bike riding in general is considered to be rough on kidneys. High impact kidney belts are not required to prevent injury for your sport.

[George Jung]

I realize that Karol but I am not riding 60ft doubles or 90ft tabletops, I always ride within my limits with full gear.  Right now, for me, it's that quality of life thing.  I am not going to live in a bubble.  If I do happen to get transplanted I will reevaluate my situation and make any necessary compromises. 

[BASSMAN]

I bet you guys thought you would never hear from me again. 

Just a little update since my last visit to the board.  I soaked up the good advice that I received from you guys and decided to make some changes.  It is not easy but so far I have been able to maintain.  I am now at day 25 SMOKE FREE.  I don't like to get to cocky about it because I have been this far and further several time before and fell back into addiction.  I have been exercising on an elyptical rider 20 minutes every other day.  I am trying to get a grip on eating.  The former smoke-a-holic uses food to try and receive that dopamine rush and that is another habit to break.  I have not gained any weight at least.  I tribute that to the exercise.  If I die tomorrow, I die with a huge since of pride for breaking the addiction once again.  By the grace of God, I will not fall back into it.

Anyways,

I wanted to thank you guys!  Pat your selves on the back.  Your response may have saved me from a fate more horrible than dialysis.  I feel free again.  No longer held hostage by a chemical.

THANK YOU ALL!!!!

I have my next labs in April and I will let you guys know what they say.

I have been soaking up life and have not been on the net very much lately.  On purpose.  I still have a load of questions about dialysis and will get to those soon,  Right now, I just want to forget about it a while longer and focus on living.

Love to you!

[willieandwinnie]

Good for you BASSMAN. Don't be a stranger. Take care.

[okarol]

  Bassman that's is so incredible! It sounds like you were ready and willing to make a change and you did it!
Thanks for letting us know how you are!
 

[BASSMAN]

Thanks!

You guys and gals are awesome!