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Author Topic: Hope the second time is better.  (Read 905 times)
sahern
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Frozen in Alaska

« on: January 20, 2016, 09:48:27 PM »

Hello to everyone.  This is my second time on dialysis and this time I am doing PD.  My story started back in 1979.  I found out through a sports exam that I had to much protein in my urine.  After seeing the doctor I found out that I needed reflux surgery.  That was taken care of and every thing went great until 1994.  During a eye exam the doctor saw something in my eye and asked if I was diabetic.  I said no so she had me get a blood test to see if I was developing diabetes.  Well as it turns out it was not diabetes but my kidneys had completely failed.  The Doctor that gave me the results said by the numbers I should have been dead.  I was sent down to the hospital 350 miles away in Anchorage AK to have an emergency catheter put in and started dialysis right away in the hospital for three days to get me stabilized.  When everything was ok I flew back home and started dialysis in the local center.  The hardest thing about the whole thing is that I just had a little girl that was not even one year old yet.  I was only on dialysis for around 4.5 months as my mother donated her kidney to me in Jan of 1995.  The transplant lasted for a little over twenty years.  The whole time my numbers weren't perfect but I kept beating the time frames the Doctors gave me for my kidney to fail.  Beginning the first part of 2015 I had to have a number of stints placed in my heart and than again at two other times the last in September. For a total of six.  Even though they used the smallest amount of contrast dye it finally took its toll on my kidney.  That's life.  I am trying PD this time for the freedom and lees restricted diet.  When I was on hemo I was losing the use of my legs and the end just before the transplant I was in a wheel chair. I am hoping with PD this will not happen.  So far I have been PD about two months and with the problems at the start everything is going OK.  Thanks to this form I have found out that there are others out there who have had problems with pain both filling and draining.  The nurses who trained me had not seen anyone with the problems I was having.  Everything is fine now but a first I did not think I would be able to do PD.  Thank you for this form.  Shaun
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iolaire
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« Reply #1 on: January 21, 2016, 05:24:59 AM »

Welcome to the group, its great place for venting, feedback and some great ideas with facts mixed in.  I'm glad to hear you had a good run on your mother's kidney, do they do transplants in Anchorage or is that done in Seattle?

Are you in Fairbanks?  I grew up in Southeast and when I was medevac'd in high school it was to Children's Hospital in Seattle (for Lupus caused seizures). I graduated from Petersburg High School (Midway between Ketchikan and Juneau) and finished up college at UAF after two years in Albuquerque.  I've been in Arlington VA right in the DC metro area since graduation.  I don't get back to AK much these days but I do need to visit my father in the next few years.
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Transplant July 2017 from out of state deceased donor, waited tree 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.
Charlie B53
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« Reply #2 on: January 21, 2016, 06:52:31 AM »


Hi Shaun!

Welcome to IHD.  Glad you've found us.  You will fit right in here.  With a prior history of hemo, transplant, eventual failure, and now on PD, seems like you have experienced the whole world of Dialysis.  Have no doubt that in here you will meet others with quite similar stories, those with long histories of dealing with kidney issues.

I am curious about your drain/fill pain.  I am also on PD only 2 1/2 years and have to wonder if those that do have these pains, if your body size/weight/distribution is same as mine, different?   As I rarely have pains, not regularly, rarely.  But those times I do, lol, well, I can laugh now, but not then.   Fortunatley the pain is only rare, if it was more often I'd be bawling in the Dr's office in attempt to find the reason and do something about it.

Look forwarde to hearing from you more.

Take Care,

Charlie B53
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cassandra
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When all else fails run in circles, shout loudly

« Reply #3 on: January 21, 2016, 08:06:44 AM »

Welcome to the site sahern

     :welcomesign;


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
       still on waitinglist, still ok I think
sahern
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Frozen in Alaska

« Reply #4 on: January 21, 2016, 12:03:33 PM »

iolaire

Yes I am in Fairbanks. The transplants are done in Seattle.  I will not be able to to get back on the list until Sept. as the used meditated stints and the transplant center requires a one year wait after they are installed.  When I was in high school I lived in Ft. Monroe VA and loved it there.  I don't think I would enjoy it so much now as I have lived in Fairbanks so long that it is hard for me to be around large numbers of people.  I also went to UAF for three years starting in 1983.
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sahern
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Frozen in Alaska

« Reply #5 on: January 21, 2016, 12:12:41 PM »

Charlie B53,

Thanks for the reply.  I only had a little extra weight on me at most times and at the time of training even less.  I started training two weeks after surgery and I had no appetite during that time so I weighed about ten pounds less than normal.  Not sure about your size but hopes this helps.
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kickingandscreaming
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« Reply #6 on: January 21, 2016, 02:00:12 PM »

Welcome, Sahern.  I too am new to PD.  I did in-center hemo for a couple of months and just finished my PD training 2 days ago and am now on my own.  I also experienced fill and drain pain.  Some caused by fibrin that created a blockage/suction, and some was caused by positioning the bag too high so the fluid rushed in and hurt like hell.  Now my struggle is about fibrin and I just started on daily heparin as my (manual) drains were taking over 2 hours each.  I kid you not.  I was so frustrated and felt like I was just an intermediary for dialysate-- my new purpose in life.  :sarcasm;

Hopefully, with heparin, there might be some smoother sailing ahead. I wish the same for you.
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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
del
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del and willowtreewren meet

« Reply #7 on: January 21, 2016, 06:18:50 PM »

 :welcomesign; Glad to have you here!!
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Don't take your organs to heaven.  Heaven knows we need them here.
Vt Big Rig
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« Reply #8 on: January 22, 2016, 04:10:42 AM »

Welcome to the site.
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VT Big Rig
Diagnosed - October 2012
Started with NxStage - April 2015
6 Fistula grams in 5 months,  New upper fistula Oct 2015, But now old one working fine, until August 2016 and it stopped, tried an angio, still no good
Started on new fistula .
God Bless my wife and care partner for her help
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