Quality of Life

[MooseMom]

I suspect that once we get older, everyone else is older, too, and they have their own medical issues.  We're just happy to still be alive; the bags and the pills are just part of it.  LOL!

[malaka]

Late response, I know, so I'll be brief.  Predialysis I was quite sick but since it was a creeping up type of sickness, I wasn't vitally aware of it.  First month or six weeks on dialysis were rough.  Now, 4+ months into the program, I feel really good the day after dialysis.  Sometimes, when I've gained too much weight between sessions, the rest of the day post dialysis isn't too good.  I'm tired. 

Now, dialysis is my job.  I have a schedule and have to keep it.  Along with diet restrictions. 

[Lillupie]

My recommendation:  get cancer instead of renal failure, they treat you better.

Gerald Lively
Mad as Hell!!

I hate to say this/admit this, but I am jealous of those who get cancer. That is all people seem to care about. Cancer this, cancer that. And you can beat cancer. There is NO beating this. I personally would give anything to have cancar and NOT dialysis. Pure torture and not being able to eat anything any tme.
Just me, and my pure sickness of dialysis.

Lisa

[Gerald Lively]

Lillipoo or lillipie;

Try dialysis and cancer at the same time.  I beat kideny faiolure after they said I'd never get off dialysis.  I did it in eight months.  I just finished a month of radiation for lymphoma and I am hopeful that the CT scan scheduled for next month will show no tumors.

My remarks about dialysis vs chemotherapy has much to do with the quality of care.  The repitive drudgery of dialysis in a faciluty that can also serve as a garage is an insult to the fact that we are human beings.  Neither chemotherapy or dialysis is something we want to undergo, but my experience is the treatment for cancer, which can be very difficult, is far better with the professionalism of the staff and the welcoming decor of the facility. 

I have had cancer four times now, have beaten a full scale kidney failure (per the doctors), suggered surgery, multiple chemo sessions (including ABVD) and two radiation bouts.  My choice is for better treatment for everyone.

Gerald Lively

[MooseMom]

Glad to see you posting again, GL.  How are you?

[dialysisadvocate]

Good to see you back, Gerald - and you are ever-so RIGHT -- cancer patients are treated much differently than dialysis patients and, in fact, get not only  more respect from the professionals but are educated more
Roberta Mikles BA RN - Dialysis Patient Safety Advocate - www.qualitysafepatientcare.com

[Bill Peckham]

Lillipoo or lillipie;

Try dialysis and cancer at the same time.  I beat kideny faiolure after they said I'd never get off dialysis.  I did it in eight months.  I just finished a month of radiation for lymphoma and I am hopeful that the CT scan scheduled for next month will show no tumors.

My remarks about dialysis vs chemotherapy has much to do with the quality of care.  The repitive drudgery of dialysis in a faciluty that can also serve as a garage is an insult to the fact that we are human beings.  Neither chemotherapy or dialysis is something we want to undergo, but my experience is the treatment for cancer, which can be very difficult, is far better with the professionalism of the staff and the welcoming decor of the facility. 

I have had cancer four times now, have beaten a full scale kidney failure (per the doctors), suggered surgery, multiple chemo sessions (including ABVD) and two radiation bouts.  My choice is for better treatment for everyone.

Gerald Lively

As long as we're picking our afflictions I think I would rather have halitosis instead of either one.

[amanda100wilson]

"As long as we're picking our afflictions I think I would rather have halitosis instead of either one."

Bill, love it.   

[WishIKnew]

@ Bill, yeah, I've done the kidney failure/hemo-dialysis and cancer at the same time, too.  I don't recommend it!

I really struggle with those who say they'd rather have cancer than ESRD.  Having had both, I TOTALLY disagree...

[Trikkechickk]

The hardest part of HHD is making time to do it.  Other than that I remain active.  I simply am not going to over-analyze ERSD.  I strive to just keeping on going!

[MooseMom]

The hardest part of HHD is making time to do it.  Other than that I remain active.  I simply am not going to over-analyze ERSD.  I strive to just keeping on going!

Oh, I like this!  God, I overanalyze everything!   I can be a real navel-gazer sometimes.  Thanks for this!

[Lillupie]

I just haaate dialysis with the passionn. Death looks really good most days. Im tired of the supplies coming when they want, the horrible food choices and the general public seems to not care at all about kidney failure. People almost worshop cancer and that is actually beatable.

I dont want both. Just would rather have cancer and NOT kidney failure.

People seem to be more sympathic towards cancer. Just my opinion.

Lisa

[Bill Peckham]

I just haaate dialysis with the passionn. Death looks really good most days. Im tired of the supplies coming when they want, the horrible food choices and the general public seems to not care at all about kidney failure. People almost worshop cancer and that is actually beatable.

I dont want both. Just would rather have cancer and NOT kidney failure.

People seem to be more sympathic towards cancer. Just my opinion.

Lisa

Cancer is not a single disease, anymore than kidney disease, there are many varieties. Some varieties of each you would not wish upon anyone, let alone yourself. The thing I am having trouble with is that dialysis isn't a disease. Dialysis is a treatment. So let me reframe the question.

If you had a choice would you treat your CKD with chemo? Just to narrow the choice.  If instead of a year of conventional incenter hemo would you prefer 156 chemo sessions? It's hard to imagine the choice but if chemo somehow could replace kidney function to the same degree as incenter would you choose it?

I'll say I would go with the dialysis.

[MaryD]

Having tried both, I would choose dialysis.

[Lillupie]

I just haaate dialysis with the passionn. Death looks really good most days. Im tired of the supplies coming when they want, the horrible food choices and the general public seems to not care at all about kidney failure. People almost worshop cancer and that is actually beatable.

I dont want both. Just would rather have cancer and NOT kidney failure.

People seem to be more sympathic towards cancer. Just my opinion.

Lisa

Cancer is not a single disease, anymore than kidney disease, there are many varieties. Some varieties of each you would not wish upon anyone, let alone yourself. The thing I am having trouble with is that dialysis isn't a disease. Dialysis is a treatment. So let me reframe the question.

If you had a choice would you treat your CKD with chemo? Just to narrow the choice.  If instead of a year of conventional incenter hemo would you prefer 156 chemo sessions? It's hard to imagine the choice but if chemo somehow could replace kidney function to the same degree as incenter would you choose it?

I'll say I would go with the dialysis.

[WishIKnew]

Well, if it's sympathy you're looking for, go for cancer.   

But let me frame it for you the way I see it.  In order to beat cancer (at least this time) I had to have a double mastectomy.  I have 2 huge ugly scars from under my arms to my breast bone on both side where my breasts used to be.  I am not just flat, I am concave.  Everything is gone including some of the muscle covering the breast bone.  I am not a candidate for reconstruction.  I am 48 years old and married.  For the rest of my life I will have a constant reminder every time I shower or look in the mirror or make love with my husband that cancer stole something from me, something every other woman has, something our society seems to put a huge amount of emphasis on.  Imagine it for just a moment.  And while you're at it google recurrence statistics for breast cancer.  Not pretty.

On the other hand.  My kidneys failed and for 5 years I was on dialysis.  I did PD most of the time, with a cycler at night.   It really was not horrible for me.  It became routine.  The 6 months on hemo were by far the worst, but they happened to coincide with the cancer so everything was awful then.  Then I got a transplant and I am getting my life back.  Meds and a blood draw once a week now.  Not bad!

I never thought I would die from ESRD.  Maybe that was totally naive.  But the minute I heard cancer I was sure I was going to die.  So was everyone around me, including my 14 year old son.  The kidney failure we, as a family, really handled well because I was, for the most part, able to take care of myself and keep things pretty normal for my husband and son.  The cancer was a whole other story.  It rocked our world like nothing else!

So, having never been down the road I've traveled, you probably don't understand, but, as I've said before, wanting cancer over ESRD is just ridiculous in my opinion.  But, if it's sympathy you want, you get it when you have cancer....because everyone is terrified that you will die.

[amanda100wilson]

WishIknew: very well said. 

It is just a shame that there isn't more compassion and understanding towards people with ESRD. What pees me off is the 'you can have a transplant and live happily ever after' mentality of the general population, and this site is testimony to the fact that many of us do live shortened lives and endure a premature death.  It seems that there OSA contradictory u derstanding of ESRD.  On one hand, there is the attitude, 'you can have a transplant, despite the fact that any story about transplantation refers to 'life-saving' surgery.  Puzzling.

[WishIKnew]

Amanda, I totally agree, it is unfortunate the people don't have more understanding and compassion towards people with ESRD!

 

[Kitty Cat]

My husband was on dialysis for many years before the cancer came along. I wouldn't wish either on anybody. He did the chemo therapy to try to reduce the mass, it wouldn't have taken it away but he was so sick from the chemo, he finally decided to wing it for the rest of the time he had left. The dialysis was still on and for 3 days a week at 4 hours per session.

He had lost weight with dialysis but it was unreal what cancer did to his body. The care that I gave to him to keep him comfortable was substantial compared to what I had to do for him with dialysis.

If there was a choice, I'd go with dialysis. There are bad days, but everybody has bad days. Please don't think I don't understand, trust me I do. The way I've been looking at it is that renal failure does not get enough funding to research/create an artificial kidney, etc (in this day and age, I don't understand it) Cancer funding has been in the billions of dollars and not one cure for even the remotest cancer has been found. I may sound bitter, I'm sure I am since I lost my husband but we are in 2012. Scientists can isolate things, so why not follow up on one little thing so we can have hope that there COULD be a cure?

Sorry for the rant.....

[dialysisadvocate]

opinions of Roberta Mikles - Dialysis Patient Safety Advocate www.qualitysafepatientcare.com

Well, I am wondering how political this is -- an artificial kidney (they are working on this now in California) -- I am also wondering how the large dialysis providers would survive if there was an articifial kidney - Would they still make large profits as they are? When you see how much money the providers give to our congressional leaders, one has to wonder ---

Don't let anyone fool you -- as far as I am concerned the providers are all revenue thirsty and will do anything to increase their revenue --- just take a look at what happened with the Epogen escapade and Davita --and the resulting congressional hearings -- many patients were placed in situations of harm due to overdosing -- 

I think the providers will do anything to keep patients dependent upon them --

[Whamo]

Dialysis Advocate,  I think we'll see a big change in dialysis treatments during the next decade.  The current kidney center model is unsustainable; it's too expensive. 

[Gerald Lively]

At a time when resources are plentiful, the World squanders.  And yes, Dialysis patients, there seems to be a kidney replacement on the far horizon based on certain filtering fabrics.  I suspect we will never see it, not you, not me.  For now we warehouse dialysis machines and you take a number, take a chair and we let them take out too much water – a practice guaranteed to make you feel like a two-day old dog poop on the front lawn. 

Reliance on a single research idea is a fool’s game. We have a demonstrated need to get off that damn machine, an opportunity to lead a more active life; we need freedom from the tyranny of casual routine institutionalized treatment.  We are people. I need not declare that DaVita or Fresenius does not want to abandon the dialysis machine in favor of an artificial organ replacement.  That, we know, represents the killing of the cash cow.

The resources I mention are the people suffering from renal failure.  They are either dead or sitting next to some machine that was not meant to be a cure but a type of “hold you in place for now” medical procedure.  But once you fall into that category, you are forgotten.  So, where are the big bucks going? We know! Cancer research!  There is enough cancer money floating around that treatment facilities look much like five-star activity rooms.  Dialysis centers by comparison are converted garages. 

So, we give you drugs for anemia, surgically alter your body to accommodate the machine, then we ignore you.  I opt for freedom, I want to bitch to every soul that gets within shouting range, I want to draw attention to the plight of the 500,000 patients that reside next to that infernal machine.  Stop screwing around, I would say, stop war and use that money to invent something that doesn’t kill.

 

[cassandra]

Well said GL, and Roberta Mikles. Us D'ers are just cashcows being milked.

[cattlekid]

GL - not sure if I posted this here or elsewhere, but I had an eye opening discussion with my neph last month when I was in for my monthly visit.  I discussed this exact topic with him, why there seems to be money coming out of every orifice for cancer but not an extra dollar for renal patients.  What he told me was interesting.  He told me that the money to be made in cancer is in the drugs.  Apparently, oncologists may make $100,000 per year seeing patients (just using round numbers), but they make $200,000 per year buying chemo drugs from manufacturers and reselling them to patients (well, actually to their insurance companies).  So while there is skillions of dollars to be made in oncology, there's not an extra buck to be had in nephrology because Medicare doesn't pay squat.

When I was in-center, I knew I could throw my weight around, so to speak, because I was a private insurance patient.  I got the shift I wanted immediately and could always seem to be able to change shifts whenever I wanted.  When the FA started making noise about my lack of a fistula, I told him that if he kept it up, I'd leave for another clinic as there were tons of choices in my area.  I knew what they were getting from my insurance company each week and I knew how much it would hurt if I left.  I kind of felt like an ass when I was doing it, but I figured that I would get what I want from the clinic while I still had the ability to do so.

[Kitty Cat]

I agree whole heartedly that those machines are temporary yet they are the only lifeline at this point. There needs to be a better way.

After what you said Cattlekid about the oncologists, I now know why my husband's oncologist was upset when he stopped chemo. We had to make the choice of quality of life or quantity of life, which there is no guarantee. He chose quality.

Once my husband passed, I kept receiving bills from my insurance company saying that they were never paid fully for dialysis. The problem was the office kept billing private insurance before medicare. I spoke to them at least 6 times before I became frustrated enough to just pay it and get it out of my life. Now, I've received 2 notifications over the past 3 months that the dialysis company is trying to bill them yet again for services that were paid for!!! Pure greed.