New From Pennsylvania

[Geiser100]

Hi everyone. I'd like to introduce myself. I'm a 26 year old guy and 13 years post transplant. I needed a transplant due to a rare genetic disorder (a type of lysosomal stoage disease). These last few months have been stressful. I became anemic around September 2017 requiring a one time blood transfusion and Procrit injections every 3 weeks. Two days before my last blood test I noticed my breath smelled very strongly of ammonia. My creatinine showed 8.9 requiring emergency biopsy and thus the installation of a tunneled permacath for hemodialysis. I was never on dialysis before my first kidney, so this is all new for me. My first two sessions was at the hospital on January 6th and 8th and now I'm at a small dialysis center. I'm doing 3 hours 3 times a week, but might cut back to twice a week. According to my doctor I'm responding very well. Creatinine went from 8.9 to 5.4 in just a weeks worth of treatment. The center I get treatment at is using the Outset Tablo machine. I believe this is a relatively new machine? The first few times I got very tired, wiped out, and tingly after. Now I feel much better and have more energy afterwords. I just hate this big port hanging off my chest. Feels so awkward getting dressed and driving. I've already found this site very helpful.

[Paul]

 
Hello Geiser100, welcome to the site. Sorry to hear about the kidney, I trust you are on the list for a second one? As to the external part of the catheter, I can tell you from experience that you will eventually get used to it. But if you are on dialysis for a while, have you considered a fistula? (N.B. Site rules: feel free not to answer my questions if you don't want to.)

[Vt Big Rig]

Welcome to the site and best of luck. And I hope you continue to find the site helpful.

[cassandra]

Welcome to the site Geiser100


   


Take care, Cas

[kickingandscreaming]

Welcome.  Have you considered doing PD instead of Hemo?  It's easier on the body and a different kind of interruption of the lifestyle (you do it as you sleep.)

[Charlie B53]

Welcome to IHD!

I've only been on Hemo one year now but did 3 1/2 years on PD at home before screwing up and giving myself a terrible infection forcing the change.

I have learned very quickly NOT to drink much.  Keeping the 'take-off' as low as possible as the more I take off the worse I feel afterwards.  For me, when I have to take-off 3 or more I break into a sweat, then if there is much more my legs will begin to cramp terribly.  when it is that bad later that day if I take a nap my legs cramp until I get up and walk.  Same thing that night.  So the pain teaches me very quickly to learn to control my thirst and severely limit how much I drink.

The years on PD I was free to drink as much as I wanted.  Nightly treatment pulled all that fluid out just fine.  With the added benefit that I had NO dietary restrictions!   I could eat whatever I wanted.  I even needed to take potassium supplements as I couldn't keep eating enough to keep up with PD taking it out nightly!  Having all that fluid in my belly I found I couldn't eat near as much as before.  I started cutting back on the white flour as well and in my first 2 years I lost 100 pounds that I didn't need to carry around.  It's still gone. The change to Hemo was HUGE!  No more potatoes, tomatos, bananas, oranges, most melons that I grew.

I had a fistula created 6 months ago.  Recently started using it but still having a few flow problems.  Still got my cath which we use one side of it almost every other treatment.  That might get fixed in another week then I'm sure Doc will want to pull the cath out. 

There are advantages and disadvantages to both PD and Hemo.  You need to learn more about both and decide which is the better option for you.  We can answer any questions up come up with, or at least we will try.

Take Care,


Charlie B53

[Geiser100]

Hi again. The doctor did say I might be changed to PD sometime in the future. Starting next week I go to Hemo just twice a week. Monday and Friday which is a big change for me. I haven't been gaining much fluid. They take off a liter of fluid at the most. Last treatment I gained almost nothing. Im still peeing some. Usually just twice a day. My potassium is generally on the low side so my diet isn't as strict thankfully.

[Charlie B53]

Keeping those take-offs that low and you will do very well.  It ain't easy sometimes.  I use both of the mint flavor Lifesavers to help with my dry mouth.  Recently I found Hubba-Bubba Bubble Gum on sale.  I used to chew a lot but somehow quit many years ago.  I've found I still like it and have started using once in a while.  It also makes my mouth water and relieves dryness.