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Author Topic: Hello I'm Adam  (Read 3270 times)
Adam.Kamau
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« on: November 21, 2017, 12:24:23 PM »

This is my story. First off I'm a 37 yo male from Washington DC. Over the course of the last year I noticed a few changes to my normal healthy disposition. First I noticed my legs would swell after a long work day, didn't think too much of that.  I also noticed some foam in my urine.  I ignored both of these obvious signs that something was seriously wrong.  Fast forward to this January and I feel horrible.... Headaches daily,  cramping fingers, toes, and even large leg muscles.  I also had an odd taste that I would describe as ammonia. I looked up "ammonia breath" on web md and to my shock it said ESRD! At this point I think I'm dying and probably would've ended up dead without quick treatment.  I went to urgent care & told them my self diagnosis of ESRD & the docs said that was highly unlikely but when they saw my BP they told me to go to the emergency room.  After they admit me they interrogate me about what drugs I've taken to cause this and I don't have an answer.  A kidney biopsy sent to Mayo clinic came back a few days later.  Kidney function down to 15% with a cause of iga nephropathy. Basically my immune system attacked an infection in my kidneys & shut em down. While in the hospital I also got my permacath and started hemodialysis treatments.  I am now on PD but a bout with peritonitis has me rethinking my modality. Glad to meet this ihatedialysis.com community and I hope we can enrich each other's dialysis journey.
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Charlie B53
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« Reply #1 on: November 21, 2017, 02:36:59 PM »


Hi Adam and Welcome to our IHD 'Family'.

It's a good thing you noticed the changes and started looking for the cause as others may not pay attention and delay seeking medical help far too long.

I did 3 1/2 years on PD and did quite well until an infection caused me to lose my PD Cath.  Surprisingly, since I am an 'Early Riser' and a 6:15 seat time, In-Clinic is working quite well with the added advantage I don't have to do PD every night, AND I also have every other day OFF.  As well as totally free weekends!   Hooray!

The dietary and food restrictions aren't really that bad, considering I am now eating much healthier than I have been for most of my life.


I'll be 64 next week and other than the constant tiredness, I don't think I'm doing too bad.

Glad to have you here on the boards.

Take Care,

Charlie B53
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Michael Murphy
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« Reply #2 on: November 21, 2017, 02:49:21 PM »

Welcome, I have been on hemo for about 5 years now, did not consider PD once I learned I could not swim in the lake I have a house near in the Adirondacks.  Every one is different and everyone must find the type of dialysis that fits into their life the best. Good luck but sorry you have to be here, but glad you joined the site.
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kickingandscreaming
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« Reply #3 on: November 21, 2017, 04:10:46 PM »

Welcome, Adam.  It sucks that you have to be here, but it's good that you found such an excellent means of support in this awful disease that so many of us share. :welcomesign;
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Diagnosed with Stage 2 ESRD 2009
Pneumonia 11/15
Began Hemo 11/15 @6%
Began PD 1/16 (manual)
Began PD (Cycler) 5/16
Cupcake
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a good year for Chevys

« Reply #4 on: November 21, 2017, 07:36:04 PM »

Welcome Adam. I've been on PD a year now and am doing great. Can you tell me how your peritonitis presented and any ideas what happened? I'm meticulous to the point of neurotic in fear of peritonitis.
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PD for 2 years then living donor transplant October 2018.
iolaire
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« Reply #5 on: November 22, 2017, 01:38:15 AM »

Welcome to the group. I'm in Arlington, dialysis for 3.5 years at a davita center near the former Landmark Mall in Alexandria and just received a transplant at GW after a six year wait on the transplant list.

Do what you can to keep on top of your health now to minimize the amount of health stress to help keep dialysis as manable as possible.
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Transplant July 2017 from out of state deceased donor, waited three weeks the creatine to fall into expected range, dialysis December 2013 - July 2017.

Well on dialysis I traveled a lot and posted about international trips in the Dialysis: Traveling Tips and Stories section.
smartcookie
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LMSW

« Reply #6 on: November 22, 2017, 07:28:27 AM »

Hi, Adam!  I am glad you found us! Your story is incredible and gives hope to hypochondriacs like me!  Okay, bad joke...  :rofl;
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I am a renal social worker.  I am happy to help answer questions, but please talk to your clinic social worker for specifics on your particular situation.
Adam.Kamau
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« Reply #7 on: November 22, 2017, 08:23:45 AM »

Ty for making me feel so welcome!  I feel like the opposite of a hypochondriac,  I am Ironman (but slightly anemic).  As for how my peritonitis presented was abdominal pain &  cloudy bag in my mid day exchange.  My routine is nightly apd on the machine 2500 ml x 5 with 2000ml last fill followed by a mid day exchange when I come home from work. 
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kickingandscreaming
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« Reply #8 on: November 22, 2017, 08:49:08 AM »

I, too, do PD and am always interested in how someone gets peritonitis.  Do you remember how/when you slipped up?
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Diagnosed with Stage 2 ESRD 2009
Pneumonia 11/15
Began Hemo 11/15 @6%
Began PD 1/16 (manual)
Began PD (Cycler) 5/16
kristina
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« Reply #9 on: November 22, 2017, 10:01:21 AM »

Hello Adam and welcome to IHD. You had quite an incredible journey!
I have been on hemo-dialysis for almost three years with a "chest-cath" and (touch wood!!!) it is not too bad. My "ticket" so far has been, that I keep strictly to my kidney-friendly diet and "stick" rigorously to my liquid-restrictions. That is, of course, very difficult, but in my case it is the only way to make me feel not too bad.
I send you my kind regards and all the best from Kristina. :grouphug;
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Bach was no pioneer; his style was not influenced by any past or contemporary century.
  He was completion and fulfillment in itself, like a meteor which follows its own path.
                                        -   Robert Schumann  -

                                          ...  Oportet Vivere ...
cassandra
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When all else fails run in circles, shout loudly

« Reply #10 on: November 22, 2017, 10:28:11 AM »

Welcome to the site  Adam


   :welcomesign;


If you can keep yourself not getting peritonitis  :waiting;  [size=78%]PD will keep your residual kidney function for longer. Either D has pro's and cons.[/size]


Take care, Cas
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I started out with nothing and I still have most of it left

1983 high proteinloss in urine, chemo, stroke,coma, dialysis
1984 double nephrectomy
1985 transplant from dad
1998 lost dads kidney, start PD
2003 peritineum burst, back to hemo
2012 start Nxstage home hemo
2020 start Gambro AK96

       still on waitinglist, still ok I think
Paul
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That's another fine TARDIS you got me into Stanley

« Reply #11 on: November 25, 2017, 08:59:58 AM »

Hello Adam. Sorry to hear about your peritonitis. From what I know, if you are on night PD, then PD is better. But if you are on day PD, HD is less intrusive into your life. Of course, if you are worried about getting peritonitis again then HD with a fistula should prevent that (although HD using a catheter can still get infected).

Welcome to the board, hope we can help if you need information or advice.
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Whoever said "God does not make mistakes" has obviously never seen the complete bog up he made of my kidneys!
Adam.Kamau
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« Reply #12 on: November 27, 2017, 06:14:28 PM »

I didn't have any noticing slip ups causing my peritonitis, my nurse seemed to think it could be my shower head.   The cause was epidermal staph infection
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cattlekid
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« Reply #13 on: November 27, 2017, 06:24:10 PM »

Hello Adam and welcome!

I am a fellow IgA sufferer.  I knew about my IgA for about 10 years (a long story of how I was diagnosed).  It was simmering that entire time then went off the rails in the course of a few short weeks.  I'm talking from 1.2 creatinine to over 9 in less than 6 weeks.  My nephrologist wanted to throw himself off the roof of the hospital.  Like you, it was some sort of infection that was just barely noticeable and my immune system must have gone to town. 

I started dialysis with a permacath but transitioned to home hemodialysis with NxStage.  I did 9 months in center and 18 months on HHD before I received a deceased donor transplant in April of 2013.  Thankfully, my new kidney has been chugging along and my creatinine runs about 1.3 to 1.5. 

Anything you would like to know about HHD as a choice of modality, just give me a shout.
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