Charlie B, another new guy here

[Charlie B53]

Recently found this forum as I've been searching and learning more about PD.  My kidney function has been declining for years as a result of multiple factors.  High blood pressure, way uncontrolled everytime the Dr's make a change in my meds my BP wacks out again for months til they get dosages figured out. 30 years of high dose NSAI's for the pain from damaged joints.  Daily dehydration at work.  And I've smoked for close to 45 years.

The Dr's told me I had to quit work in'08 and I went on SS but my kidneys must not have gotten the memo cause they have continued to decline. Last couple of years I've been hanging just under 20%, exhausted all the time. Jan 2013 I started one of the immune-suppressant drugs so they could put me on a transplant list, my body rejected the drug, got so sick I just curled up in bed and couldn't get up, after about 2 weeks I stopped taking the drug and told the Dr's that I rather die than keep taking that med.  If I had to take that in order to get a new kidney it would be a waste of the kidney cause the drug was killing me.  So I am not on any transplant list.

May I started PD.  I can't honestly claim I 'hate' dialysis because it truly believe that I would not be here today without it.

I feel so much better now that I am flushing that poison out of me every day.

No more leg swelling, the calves are not 'leaking' any more!

It is a hassle having to come in here and do exchanges manually 4 times a day, but the thought of how I was before, now way would I give this up.

I have some sort of life again.

I met one of the clinicians that has been with PD since its beginning.  Had a great talk and learned how and why PD became.  Many thanks to those Dr's

[Darthvadar]

Hi Charlie....

Welcome to IHD.... You'll find we're a friendly bunch...

I'm caring for my mum who's also on PD... Much happier than on haemo...

Visit frequently, and post often....

That's what we're here for....

Darth... Moderator....

[Shaks24]

Welcome Charlie B53. My story is similar to yours. Was feeling terrible at 19% function. Long time smoker too. Started PD last September and feel so much better now. Still weak and get a bit tired but getting that crap out of your system makes you feel somewhat human again. Glad you found us and glad you joined. Are you considering going to the cycler?   

[Poppylicious]

Hi Charlie!

 

Thank you for joining us.  Sorry to hear of your experiences. 

No more leg swelling, the calves are not 'leaking' any more!

Before we even realised what was wrong with Blokey (affectionate online name for my husband) he had very leaky legs due to his body being so overloaded with fluid that there was nowhere else for it to go, but through the skin. Yikes!  You have my sympathies for having to have leaky legs too!  Glad you're feeling happier now that you're on PD. 

 

Poppylicious, Moderator

[kai0206]

Welcome!! 

[Jean]

Hi Charlie and      to IHD!!! This is a great site and you will always find some one who will answer your questions. Enjoy~~

[Charlie B53]

As long as we have pets I doubt if I will go on the cycler.  The 'Boys' (3 male dogs, all @ 27 lbs) get out of bed and want out during the night.  The 'Girls' (2 female really long hairs) stay in bed.

We did lose one of the Boys a couple of months ago.  Herbie the love bug one-eyed Beagle just layed down on a friday night and wouldn't get up and be active.  I took him to the Vet and saw a new young guy as our normal Vet was tied up in surgery most of that day.  Anyway, Herbie got a steroid and was sent home.  Did not improve at all.  Monday we went back and saw Dr Frank.  He didn't like it the Herbie 'shivered' some and kept him the day and over night to run tests.

Next morning very early Dr Frank called me to hurry in.  Herbie's kidneys had shut down from undiagnosed diabetes.  He had a seizure during his morning walk and fell into a coma.  We had no choice but to let him go.

It still hurts, he was only ten and slept alongside my leg every night except when I am in the hospital.

I'm afraid Jack is very old, he has really slowed down and is losing feeling in a rear leg.  I found him alongside the freeway 14 years ago and he was at least a year old then.  He is a very good  boy.

[Maggie and Jeff]

 

We've been using the NxStage home hemo for 8 years. 
It's a good option when the day comes that pd is no longer a choice for you hopefully many many years down the road. 

Don't skip your treaments.

[kristina]

Welcome to IHD and best wishes and good luck from Kristina...

[kristina]

 Jan 2013 I started one of the immune-suppressant drugs so they could put me on a transplant list, my body rejected the drug, got so sick I just curled up in bed and couldn't get up, after about 2 weeks I stopped taking the drug and told the Dr's that I rather die than keep taking that med.  If I had to take that in order to get a new kidney it would be a waste of the kidney cause the drug was killing me.  So I am not on any transplant list.

Hello CharlieB53

I have been thinking about doctors starting you on immunosupressants before they put you on a transplant-list and I am confused !
Why would doctors introduce immunosuppressants even before putting you on the transplant list... ?
... Because by their very nature immunosupressants supress the immun system, leaving the body at risk to infection, cancer and etc.,
and if there was any infection, a transplant would not go ahead.
Some of the tests throughout the work-up towards a transplant are made precisely to evaluate whether an infection, cancer, and etc. exists.

Why jeopardize a transplant by supressing the immune system prior to transplant?

Thanks from Kristina.

[Charlie B53]

The Neph was hoping to stimulat my kidney and improve my numbers.  I was just getting under 20 gfr.  Hee first tried prednisone steroid.  No improvement, I think, but I immediately started gaining water weight, well over a pound a day.  By the end of two weeks I didn't have any knees or ankles, the legs were swollen so much.  Quit the prednisone and quadrupled the water pills and the water came right off.  Then he tried the immuno-suppressant, hoping that would help.  It didn't, it just made me sick(er).  headaches, whole body aches, muscle aches clear to the bone.  Joints painful to move.  Developed an inner ear infection, like a hot knife constantly stabbing thru  my ear almost out the other side.  All I could do was curl up in my bed, chilled, wanting to hurry up and die and get it over witih.  Our three dogs were so good.  They knew their Papa was hurting and they would lay tightly along side me to keep me warm and safe.

I was so sick I couldn't get up long enough to go out to the garage and have a cigarette, so I finally stopped smoking, for a whole year.

I gave up all my meds hoping that I'd hurry up and die, I was that sick.  Instead, I got better.  So I restarted taking everything except the last added med, the immuno-supressant.  I got back to 'normal' sick.  Then the Neph sent me in to have my cath put in, started training, and PD.

Not sick anymore.  Still tired, exhaust quite easily, but NOT sick.

Still take a lot of meds, BP, cholesteral, seasonal allergies, one heart med they say I 'have to' have just because I've had by-pass, but no heart attack or damage to my heart, yet.

Oh, and now on PD they'e added Vit D, iron, potassium, and something that is supposed to help the water pills work a little better.

Oh, the pain med tramadol, I've been on that for YEARS.  Recently added the fentenyal patch.  Damaged too many joints and torn too many muscles while younger and being the typical immortal (or so I thought) stupid male.  Still have my Harley, just don't get it out much anymore.  I feel too weak to make sudden moves when idiots in cars aren't careful.

Hope this clears up your understanding why we tried the immuno-suppressant prior to TX.

I am not on any list as I'm sure I wouldn't live long, or want to, if I had to take that again.  It would be a waste of a perfectly good kidney if I got one then died from side effects of the med.  Just give the kidney to someone it would help stay alive.

I'm doing fine on PD, I'll just keep doing my exchanges, keep it clean, keep on getting outside, regular exposure to the weather, dirt, our pets, etc., all help to keep my immune system active and healthy.

So far, so good. It's only been a hair over a year, hopefully I'll have many more just the same.

Take Care,

Charlie B

[kristina]

Thank you Charlie B53 for the very detailed explanation, how your body reacted to immunosuppressants.
I am very sorry for your bad experiences.  Unfortunately I suffer "usually" very badly from drug-intolerance
and many different allergies as well and that was the reason for my asking.

Thanks again and best wishes from Kristina.