platitudes and book references

[PaulBC]

Normally I don't think in platitudes, and normally I don't put much stock in self help books, but in this case I'm willing to accept any help that's available.

Two platitudes stick in my mind, and I'm sure they are both familiar to many people here, but I wonder if anyone wants to cite any others. It might be good to have a list. I agree with both, though I'm not sure where I saw them first.

• You are the most important member of your care team. I take this to mean that while you might not come into the situation with the background of your nephrologist, PD nurse, social worker, transplant coordinator, or anyone else, you are the one with the most stake in the outcome. You'll probably never duplicate the skills of the experts who are working with you, but that doesn't mean you shouldn't try to learn as much as you can. You should be willing to second guess and ask any question that comes up. You'd probably do if if someone was remodeling your kitchen, and there is a lot more at stake here.
• A transplant doesn't cure a disease. It replaces one disease with another. You can substitute "set of problems" in the second part if it sounds too harsh, but I think it is accurate as stated. That doesn't mean "transplant bad", but that you have to understand the tradeoff. You're going to have someone else's incompatible organ, will need to take impeccable care of it, and it still won't last as long as yours would have. Plus, there are many side effects of immunosuppression, including developing cancer (literally trading diseases)

Two books I found useful, though they might not be the best. They were at my public library.

• What You Must Know About Dialysis: Ten Secrets to Surviving and Thriving on Dialysis by Rich Snyder (2012)
  
• Organ Transplants: Making the Most of Your Gift of Life by Robert Finn (2000)
  

The transplant book in particular is fairly old, leading me to wonder if anything has advanced since then and if there is a similar book written more recently. It was still quite informative for someone coming into this situation with no prior background.

I welcome any other platitudes, mottos, pithy quotes, etc. as well as other useful books on the subject of dealing with ESRD.

[PrimeTimer]

"You have to be a willing participant in your health care". 

Someone told me that years ago when I was going through my own health crisis. Now I say it to my husband, who has ESRD. As his carepartner, I can do a lot for him and help to be his voice, his advocate but really, I've learned that perhaps one THE most important things is for him to be willing to help himself because that is really what helps ME to help HIM.

[kristina]

One of my neighbours always said: "Help yourself then helps you God" or "God helps those who help themselves",
meaning, that one should try very hard oneself first and then there is help (whatever that may mean in which religion).
This phrase supports self-initiative, seems to originate from Aesop's fables and was later "transferred" ...

[jeannea]

I have to quibble a little with your transplant view. It does not replace one disease with another. Your disease is still the same as it always was. Transplant is a treatment just like dialysis is a treatment. Any treatment can have imperfect results or side effects or whatever. Think about chemo treatments.

[PaulBC]

I have to quibble a little with your transplant view. It does not replace one disease with another. Your disease is still the same as it always was. Transplant is a treatment just like dialysis is a treatment. Any treatment can have imperfect results or side effects or whatever. Think about chemo treatments.

Quibble acknowledged. Anyway, I am not the first one to express it like that. It is also not something I thought about at all before learning about transplantation. I knew that rejection was a possibility, but I had no idea that it was nearly inevitable over the long term, nor that there were a lot of side effects to the treatment needed to sustain it.

Substantively, I agree with you. It's a matter of emphasis. For a lot of people, a transplant is the best available treatment. It's unfortunate that there aren't better treatments available.

[cassandra]

”Help, I Need Dialysis,” by Dori Schatell and John Agar. Is one of the best books about D around.

And I do love, and admire your support and interest for your daughter. I had my dad's kidney from '85-'98, and even with numerous tumor removals, infections, psychy things, stress and all the rest, I wouldn't have want to miss it.

Love, Cas

[kristina]

I have to quibble a little with your transplant view. It does not replace one disease with another. Your disease is still the same as it always was. Transplant is a treatment just like dialysis is a treatment. Any treatment can have imperfect results or side effects or whatever. Think about chemo treatments.

Quibble acknowledged. Anyway, I am not the first one to express it like that. It is also not something I thought about at all before learning about transplantation. I knew that rejection was a possibility, but I had no idea that it was nearly inevitable over the long term, nor that there were a lot of side effects to the treatment needed to sustain it.

Substantively, I agree with you. It's a matter of emphasis. For a lot of people, a transplant is the best available treatment. It's unfortunate that there aren't better treatments available.

Thank you Paul for mentioning that "it's unfortunate that there aren't better treatments available" ...
... Having started with dialysis, I can only hope and imagine, that a transplant as a treatment might hopefully be easier to handle...
... Of course, I have no idea how my body might take to a transplant and how well it could be managed, but there is always the hope...

[MooseMom]

”Help, I Need Dialysis,” by Dori Schatell and John Agar. Is one of the best books about D around.

This book and the site kidneyschool.org are the resources I've found most valuable.

[PaulBC]

Thanks for the recommendations! Somehow, kidneyschool.org never came up in any of my searches, and it looks very informative.

[jeannea]

Yes, it is disappointing there aren't any other treatments. I've been hearing of new possibilities for over 23 years now. We have better anti-rejection meds than when they only had Imuran. But essentially that is the only large change. Dialysis has not changed a lot, although I believe home dialysis has improved. Living donor kidneys can be removed in less painful ways now. (They used to pretty much split you in half.) There are new meds-new binders, sensipar isn't that old, lots of BP med choices.

But in the end? The appt a patient has today is probably just the same as mine was in 1992. The doctor says your kidneys are failing and you'll need dialysis or a transplant. Here are your diuretics and BP meds and here is the paper about a low protein diet. My appt was depressing. I was kind of in shock. There was really no support at the time. (Yes, he was a good doctor but in my shock I had stopped listening. And yes I know different diseases get different meds.)

For me, the biggest change is we can now have groups like this to support each other. I read the articles about the new developments that will revolutionize our treatment and sigh.

[MooseMom]

• You are the most important member of your care team. I take this to mean that while you might not come into the situation with the background of your nephrologist, PD nurse, social worker, transplant coordinator, or anyone else, you are the one with the most stake in the outcome. You'll probably never duplicate the skills of the experts who are working with you, but that doesn't mean you shouldn't try to learn as much as you can. You should be willing to second guess and ask any question that comes up. You'd probably do if if someone was remodeling your kitchen, and there is a lot more at stake here.

I take this to mean that you can have the expertise of all kinds of professionals behind you, but said expertise means nothing if you do not take responsibility for your own care.  Your neph's words mean nothing if you do not heed them.  The meds mean nothing if you do not take them.  The transplant professionals offer nothing if you do not work with them.

It's amazing how much knowledge a renal patient can accrue.  As time goes by, you quickly learn that the professionals rely more and more upon the patient for information; it is a reciprocal relationship.  My transplant coordinator and nephrologist rely on me to get my labs done, to take my meds correctly, to chart my weight and bp and to report to them any problems or concerns.  They do not have crystal balls.  I cannot expect them to spend all of their time badgering me to do what I need to do when I know full well that they have many other patients to attend to.

[cassandra]

I would take it as: Non of the 'professionals' have as much at stake as 'the carer'  and the patient themself. So learn as much as poss, so you can do as much as poss, so you can correct the 'professionals' when necessary, and prevent negative 'outcomes' for the stake holder(s)