I Hate the Idea of Dialysis

[Kathymac2]

Hello all,

I've been reading posts on the IHD forum for some time now, but this is my first post.

I'm a 66 year old woman with polycystic kidney disease.  I've lived with the threat of kidney failure for almost 50 years since I had an IVP at age 17 that confirmed my diagnosis of PKD.   It seems the other shoe is getting ready to drop since my latest GFR was 15.   

I plan to use peritoneal dialysis if/when I have to start dialysis. I can't abide the Idea of hemodialysis after going through six grueling months of chemotherapy when I was in my forties for breast cancer. I also prefer to be in charge of my own treatment.

My older brother and younger sister both volunteered to be worked up to donate a kidney. My brother was not able to donate since he discovered some health problems of his own during the workup. My sister has been jumping through multiple hoops to try and complete her testing.  So far, so good but she's been at it since the end of last year. Sometimes I think her transplant coordinator is actually more of a roadblock than a facilitator.

I've been on the transplant list for four years. When I first got on the list I was told the wait was 5-6 years. I was recently told the wait time now is 8 years. If my sister doesn't work out as a donor I have decided to move my wait time to another hospital with a more reasonable wait time.  I'm still hopeful for a transplant before starting dialysis.

I look forward to exchanging ideas and information with the members on this forum.

Kathymac2

[Charlie B53]

Hi KathyMac2 and Welcome to IHD.    We are sort of like an extended Family, all affected with Kidney problems or a support person for a Family member with a Kidney problem.   There are a number of Members that have a transplant and doing very well but the majority of us are doing Dialysis to stay alive.   Most doing well, staying as active as their conditions allow.

I myself have been on PD now almost 3 and a half years.  My Mother was on PD here last two years before heart failure took her, so knowing what was involved it was a very easy decision for me.  And I am very glas I did.  PD is just another part of my daily routine, like getting dressed every morning, only I start in the evening and disconnect in the morning.  It makes a substantial difference in my health.   I was SICK before, not any longer.   I hate the fact that I need Dialysis but I have to admit it is NOT the end of my world, rather, it keeps my world possible.

You are making the right decision.  I wish you the best of success.

Post often, we are all in this pretty much the same.

Take Care,

Charlie B53

[Charlie B53]

Oh,  I forgot, I do that a lot, forget things.    I am still just a 'Baby', I will be 63 in December.

[Michael Murphy]

I hope your transplant comes first.  But while I am a hemo patient I fully understand why you want to avoid the hassle.  It's always good to have new members so welcome. 

[Simon Dog]

I have decided to move my wait time to another hospital with a more reasonable wait time.

You will need to move to a hospital in a different organ allocation zone to do this.

[Rerun]

Kathy,

Glad you made it on the board.   

Rerun

[Kathymac2]

Thanks for the welcome Charlie B3, Michael Murphy and Simon Dog.

Simon Dog - I live in Southern California. I would probably move my wait time to either UC Davis in Northern California or to San Diego which is also a different organ allocation zone. One thing I'll say for UCLA where I'm currently listed - they explain the system really well when you go for the first appointment.  I wish I had listed at multiple locations when I first got on the list. Then I wouldn't have to transfer my wait time.

Kathy

[Kathymac2]

Hi Rerun,

I made it!  Thanks for your help.

Kathy

[DayaraLee]

Hello, Kathy! I'm one of the ones here to support a family member who has kidney disease. It's a fabulous place with supportive and knowledgeable people. If the info you seeks isn't here, it's likely someone will guide you in the right direction!
 

[Jean]

Kathy, welcome to our group. With all the members we have you are bound to get help when you need it. Glad you joined us.   

[Kathymac2]

Can I just say to those of you who are caregivers, how much I admire your strength and dedication.  My dad took care of my mom through her dialysis and transplant and everything in between. It was not an easy journey for either of them. I am blessed to have a husband who has stuck with me through thick and thin. We will care for each other when the time comes.

[Xplantdad]

Hi Kathy...welcome from another care giver! 

[LorinnPKD]

Kathy, hello from another PKD person!

Just wanted to send my support and say welcome to IHD.  I started hemo this summer at age 40 at 6% function, ten years after my PKD diagnosis, and I have to say that 10 years of worrying and anticipation were harder for me than the worst-case scenario of just finally getting on the machine. Simply because I didn't know what to expect.

And now I know: Dialysis is OK.  Not ideal, and there are some complications here and there, but in general it's OK and survivable.  I'm pretty wiped out after my hemo sessions, but I have to say the epo and iron they give me have really helped reverse all the gradual exhaustion from anemia over the past few years. In some ways (when I'm not conked out sleeping!) I feel better than I did 2-3 years ago, which is very encouraging.

My kidneys are giant and I live alone, so PD wasn't a good option for me.

Wishing for all positive outcomes for you.

[Kathymac2]

Hi LorinnPKD,

I loved your post. I don't think most people understand the cloud that hangs over your head when you get a diagnosis of CKD whether from PKD or from a different cause. You live day to day trying to plan your life knowing at some point you will need to give a large part of your life over to repetitive medical treatments.   It's not something you think about everyday, but it's definitely always there in the background waiting to pounce.

I remember crying during an appointment with my primary physician and telling him I was more worried about having PKD than having breast cancer. I was confident that the cancer would be OK in the long run (and it is), but having seen my mom go through dialysis and transplant in the 1980s I wasn't so sure things would go well with my treatment for PKD.

I guess all we can do is live day to day and tackle each new problem as it comes. Otherwise it all gets a bit overwhelming.

I'm so glad to hear that you feel better in some ways than you did 2-3 years ago.  With all the negatives associated with dialysis, the positives are sometimes overlooked.

Kathy

[Michael Murphy]

One of the problems I have seen is during the last years of pre dialysis people fixate on the looming 600 pound dialysis monster.  What they should do is let the doctors worry about their labs, and as long as you feel well enjoy what time you have before dialysis.  When the time comes the improvement in the way you feel eases the pain in the butt that is dialysis.  Dialysis is not the end, it will allow you to have a future.  I spend about 18 hours a week on dialysis that still leaves me 150 hours to enjoy the life dialysis is extending.  Finally I have begun to think of dialysis as a bridge to the future because of the new stuff that is being researched.  In my life time I expect to see the need for dialysis to be taken over by either cloning or a implantable Artificial.Kidney.

[LorinnPKD]

It's hard, though, to sit back and let the doctors worry about the labs when you don't know when it's gonna happen or how hard it'll be.

I always called PKD my "zombies on the horizon" situation -- it was like a zombie movie where you knew they were coming, and you knew there wasn't anything you could do to stop them, and you do your best in the time you have but it's really freaking you out.

In the years before dialysis, I found that the doctors weren't very helpful at all -- I tried several, and I would do the expensive scans, collections, and labs they asked me to do, and despite my being really well prepared and engaged with questions, the doctors would just record the test results and not really comment on what was going on.  I had one nephrologist actually shrug at me and go completely silent when I asked some very basic questions about my scans.  (With PKD, some patients get giant kidneys and I wanted to know how big they'd gotten and whether there was a correlation between their size and their function. He insisted there wasn't -- turns out there is.)  On initial diagnosis, my first nephrologist sent me in for an emergency brain scan at 5 a.m. to look for aneurysms, even though I have no family history of such.  It scared the bejeesus out of me.

Now that I'm actually on dialysis and the damage is done, I am FLOODED with resources.  I have a super helpful and patient dietitian who's been doing this for over 20 years, a very sweet social worker who understands chronic illness and checks up on everyone personally, labs twice a month, a nephrology office that bent over backwards to help me get me started on expensive phosphorus binders before I had my insurance all sorted out.

I feel completely surrounded by support since I've been plugged in on the machine.  It's wonderful, but I wish I would have had all these resources ten years ago when there was a possibility of 1) slowing it down or 2) not spending ten years in frightened anticipation.

Kathy, I like what you said about living each day.  The care now for ESRD is so much better and more advanced than what our parents went through in the '80s.

Would love to stay in touch!

[LorinnPKD]

"When the time comes the improvement in the way you feel eases the pain in the butt that is dialysis."

That is so, so true.  I love that.

[Kathymac2]

Michael Murphy - you have a great attitude about dialysis.  I will do my best to keep dialysis in it's place as another medical treatment that will help me to feel better and to live a healthier life.

I don't really agree with your suggestion to let the doctors worry about the labs. I feel like I am an equal partner with the medical team caring for my health. I get copies of all my labs on the computer before each medical appointment, and if there is anything of concern, I research the issue so I can discuss it intelligently with my doctor.  I should say here that I was a nurse for 30 years before retiring four years ago, so my experience may be different than others.

I think that everyone handles health information differently.  Some people want all available information (like me-to feel in control I guess) and others would rather let the professionals worry about it (like you).  I think most of us know which way we roll.  I don't think one way is inherently better than the other as long as we don't let too much information make us crazy or too little information cause us to overlook possible solutions to problems.

LorinnPKD- it sounds like you and I have traveled similar paths with you a little ahead of me. I will keep an eye out for your posts since I think your thoughts will be interesting and valuable to me.  I'm not sure how we can stay in touch without posting our email addresses on line (which I'm not comfortable doing).  If there is a way to do this let me know.

Kathy






sp mod Cas

[cassandra]

Welcome to the site Kathy

     


If you want to post a Personal Message to Lorinn, you can 'go' into her name (from any post) where you find a summary. At the top of that it says 'actions' if you go 'into' that you can send a message.

Take care, Cas

[myporkchop]

Hi kathy, my mum has just started training for pd dialysis it was a long time waiting and stressful. Initially we wanted to know her blood test results and tried so hard to keep things from getting worse. We stayed so positive, she had her bloods and we would wait with our fingers and toes crossed to see if they remained stable. But when we heard her kidney function was getting worse it was heartbreaking for her and us. She said "it was better not knowing". We don't ask now and leave it up to the doctors to let us know what medication may help etc.
Hope it all goes well for u, take care

[Michael Murphy]

Don't get me wrong, I watch my lab results closely now I am on dialysis.  As long as the results are ok, I keep on doing what I am doing.  It's pre dialysis I feel that the labs are meaningless.  I would have started dialysis several years sooner if I went bb my lab results.  I think the labs are excellent predictors of future dialysis. I do not think they are meaningful about when to start,  I started dialysis when I began to feel sick, I got time before dialysis to enjoy my life.  Today I read my lab results carefully every month and check to see if I need to do anything,  however if I did not check then, the doctor would discuss them with me, the nurse practitioner would spend even more time asking for changes, and finally the dietician would again go over my diet.  I pay attention but I don't obsess about them.  I have seen patients totally obsess about these numbers.  I am sue the pros that are paid to monitor these numbers will explain what I need to do. 

[Kathymac2]

Hi Cas - thank you for the welcome and the additional info.

Myporkchop - I've been reading your posts and was so glad to see your mum was finally able to start dialysis training and get some relief from her fluid overload. You bring up a good point; sometimes even those of us who want to "know it all" get overloaded with information and need to shut it down for a while.

Thank you for your good wishes at a time that must be so stressful for you. Prayers and positive thoughts on the way to you from California.

Michael Murphy - I totally agree about not obsessing about lab values (ever).  Since I'm not supposed to ask questions in this introduction forum I will go over to the pre-dialysis forum to ask the question your post brings up to me about how best to know when you are physically "ready" to start dialysis. Hope to talk with you further on that forum.

Kathy

[myporkchop]

Thank you Kathy, I really appreciate your kind words. All the very best to you too x

[jmintuck]

Oddly enough, I wound up on Hemodialysis w a catheter in the chest after the end result of acidentally discovering this when I got it from H1N1 and wound up in emerg over that "bad deal".  I hated dialysis in center, so I asked the doctor if I could do Home Dialysis (hemo). He said he'd look into this. I was glad at him. I almost worshipped him when he said the affirmative.  Though I currently hate in-center dialysis and the ridiculous waiting 3-4 hrs. to dialyze 3 X a week, I find it better than 3-4 times a week or so for 4 and 1/2 hours, like some poor saps get. I was only grateful of a shorter 3 and 1/2 hours. Beats the other way 'round.

 I am just going to get the fistula established in-center before I hit up again over home hemo. I can't wait. Actually, the fistula is going to get it's wake up start on Sat in the AM. Can't wait till I can begin to arrange to get this chest catheter yanked. I almost wanna laugh at the possible small pain it will cause, because it spells R-E-L-I-E-F! Once that thing is gone, I will wait a few for good healing, then have a good shower. Havent showered for months, GROSSSS! I was afraid to shower with the catheter. I know, wayyyy overprotective of it for infection prevention.

Speaking of infection control, I came durn close to having an infection 2 times. Told them to swab the thing for bacterial culture twice. Found NATTTTHHHIIINNNNGGG. So relieved. My elder sister died from infection, mainly because of her dialysis catheter, I believe. Oddly, I never met that fate.

[cassandra]

Good luck with the fistula op, and the getting home hemo. Home hemo was definitely my best move.
I still think you can't be too overprotective of your cath.

Love, luck and strength, Cas