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Author Topic: Update on all my recent issues.  (Read 3098 times)
Adam_W
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Me with Baron von Fresenius

« on: April 12, 2012, 08:33:27 PM »

As many know here, the last several months have seemed like one problem after another for me. Well, I'm not doing too bad now, and I've made it over a week without being in a hospital! My breathing problem seems to be improving, and my pneumonia is gone. They thought I was going to have to go on home oxygen but I didn't have to. My stomach still gives me occasional pain, but its tolerable and it seems to be improving as well. I'm finishing my third week of in-centre dialysis, and I'm doing ok there. My doctor said in another month to month and a half, I can go back to HHD. In-centre is more tolerable than I was afraid it would be because I'm still in charge of most of my dialysis. I manage my needles and the tech barely touches the machine once I'm on it. The staff there encourage patients to learn their machines, and almost all patients in the unit have their machines facing their chairs. A couple weeks ago, however my emotions got the best of me. I was being seen in the ER for horrible and sudden stomach pains, and I had a really bad panic attack and mentioned how I had tried stopping dialysis before, and I wanted to do it again, or hurt myself in a different way. The dr. ordered me to be sent to a mental institution! I was there for five days and it felt like I was a prisoner in jail. All my possessions were taken from me and I had no privacy. I did learn a lot of effective ways of controlling my depression and anxiety, and I'm now under the care of a good, caring psychiatrist. I have had no panic attacks or suicidal thoughts since then, and I can't even believe that I ever had any. I want to live my life, and do however much dialysis it takes for me to live my life. I don't like it obviously, but I no longer miss treatments just because I don't feel like doing them. I pray that I can keep that attitude toward my treatment. One thing that's not improving much is the strength of my legs. I have to use a cane to walk, and that makes living in an upstairs apartment very difficult. I may be able to get an order from my dr. to be able to move to the bottom floor without having to pay the transfer fee which I can not afford. I can still drive my motor scooter just fine, but its getting a little more awkward getting on and off of it. Please keep me in your prayers that I can continue to improve.   
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-Diagnosed with ESRD (born with one kidney, hypertension killed it) Jan 21st, 2007
-Started dialysis four days later in hospital (Baxter 1550-I think, then Gambro Phoenix)
-Started in-centre dialysis Feb 6th 2007 (Fres. 2008H)
-Started home hemo June 5th 2007 (NxStage/Pureflow)
-PD catheter placed June 6th 2008 (Bye bye NxStage, at least for now)
-Started CAPD July 4th, 2008
-PD catheter removed Dec 2, 2008-PD just wouldn't work, so I'm back on NxStage
-Kidney function improved enough to go off dialysis, Feb. 2011!!!!!
-Back on dialysis (still NxStage) July 2011 :(
-In-centre self-care dialysis March 2012 (Fresenius 2008K)
-Not on transplant list yet.


"Don't live for dialysis, use dialysis to LIVE"
Traveller1947
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« Reply #1 on: April 12, 2012, 09:18:34 PM »

So good to hear from you, Adam.  You've been through so much, one problem after another.  It's very heartening to know that things are getting better for you.  You CAN handle six weeks or so of in-center hemodialysis and after that you'll be in charge of your own treatment again.  This disease is such a struggle and yet life is worth living all the same.  I will certainly keep you in my thoughts and prayers--I've been doing so all along.  All the best to you, as always.
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galvo
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« Reply #2 on: April 12, 2012, 10:00:14 PM »

Good to hear that things are on the improve, Adam.
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Galvo
okarol
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Photo is Jenna - after Disneyland - 1988

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« Reply #3 on: April 12, 2012, 10:20:22 PM »

Good to hear you're getting the necessary care and I like the sound of your in center dialysis situation.  :cuddle;
Why aren't you wait listed yet?
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Admin for IHateDialysis 2008 - 2014, retired.
Jenna is our daughter, bad bladder damaged her kidneys.
Was on in-center hemodialysis 2003-2007.
7 yr transplant lost due to rejection.
She did PD Sept. 2013 - July 2017
Found a swap living donor using social media, friends, family.
New kidney in a paired donation swap July 26, 2017.
Her story ---> https://www.facebook.com/WantedKidneyDonor
Please watch her video: http://youtu.be/D9ZuVJ_s80Y
Living Donors Rock! http://www.livingdonorsonline.org -
News video: http://www.youtube.com/watch?v=J-7KvgQDWpU
lmunchkin
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"There Is No Place Like Home!"

« Reply #4 on: April 15, 2012, 03:24:01 PM »

Good to hear Adam!  Keep it up  :thumbup; :thumbup;!!!!

In my prayers,
lmunchkin
 :kickstart;
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11/2004 Hubby diag. ESRD, Diabeties, Vascular Disease & High BP
12/2004 to 6/2009 Home PD
6/2009 Peritonitis , PD Cath removed
7/2009 Hemo Dialysis In-Center
2/2010 BKA rt leg & lt foot (all toes) amputated
6/2010 to present.  NxStage at home
cassandra
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When all else fails run in circles, shout loudly

« Reply #5 on: April 15, 2012, 03:44:52 PM »

keep up the good works Adam

love 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
natnnnat
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« Reply #6 on: April 16, 2012, 06:34:16 AM »

 :grouphug; Good to see your post Adam, good to hear from you.
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Natalya – Sydney, Australia
wife of Gregory, who is the kidney patient: 
1986: kidney failure at 19 years old, cause unknown
PD for a year, in-centre haemo for 4 years
Transplant 1 lasted 21 years (Lucy: 1991 - 2012), failed due to Transplant glomerulopathy
5 weeks Haemo 2012
Transplant 2 (Maggie) installed Feb 13, 2013, returned to work June 17, 2013 average crea was 130, now is 140.
Infections in June / July, hospital 1-4 Aug for infections.

Over the years:  skin cancer; thyroidectomy, pneumonia; CMV; BK; 14 surgeries
Generally glossy and happy.

2009 - 2013 PhD research student : How people make sense of renal failure in online discussion boards
Submitted February 2013 :: Graduated Sep 2013.   http://godbold.name/experiencingdialysis/
Heartfelt thanks to IHD, KK and ADB for your generosity and support.
WishIKnew
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Alports, dialysis '07-'12,cancer'11,transplant '12

« Reply #7 on: April 16, 2012, 06:57:00 AM »

glad you got the emotional support you needed as well as the physical.  I need to see a psychologist - things in my head are really bad.  I have an appointment in two weeks.  I want to call to get in sooner but I'm afraid I'll sound so desperate that they will admit me....  Oh what a fine line we walk!

Glad you seem to be moving in the right direction!
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amanda100wilson
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« Reply #8 on: April 16, 2012, 07:07:21 AM »

glad to hear things are looking up Adam.  it takes courage to seek help for mental health problems.
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ESRD 22 years
  -PD for 18 months
  -Transplant 10 years
  -PD for 8 years
  -NxStage since October 2011
Healthy people may look upon me as weak because of my illness, but my illness has given me strength that they can't begin to imagine.

Always look on the bright side of life...
Whamo
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« Reply #9 on: April 16, 2012, 09:21:29 AM »

Hang in there, dude.  Your ordeal sounds like my September of last year.  I went to the ER because my potassium level was critical, and wound up catching a nasty fever.  I woke up three weeks later 30 lbs lighter with tubes in my mouth.  Then, for a week, they kept sticking these vapor guns into my mouth every 15 minutes.  I was tripping, hard, and when I say I was tripping hard, I know what I'm talking about, being an old hippie.  I saw ghosts, Jesus on the cross, all kinds of things that weren't there.  Finally, after getting on dialysis, and adapting, I'm doing pretty good.  Hang in, there, I am praying for you to get better.   :pray; :pray; :pray; :pray;
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glitter
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« Reply #10 on: April 16, 2012, 08:53:33 PM »

How are you doing Adam? Thinking of you!  :flower;
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Jack A Adams July 2, 1957--Feb. 28, 2009
I will miss him- FOREVER

caregiver to Jack (he was on dialysis)
RCC
nephrectomy april13,2006
dialysis april 14,2006
Lillupie
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wedding 12-10-11

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« Reply #11 on: April 16, 2012, 09:30:14 PM »

Wow Im so sorry you have gone through so much. I really know what it is like to be in your shoes and not wanting to do dialysis anymore. I hate it with the passion. and you are so young, about my age. Im 29.

 :grouphug; :grouphug;
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Check out my Facebook profile for CKD "Help Lisa Spread Awareness for Kidney Disease"

It is my utmost dream and desire to reach out to other kidney patients for them to know that they are not alone in this, also to reach out to those who one day have to go on dialysis though my book i am writing!

dx with lupus nephritis 5/99'
daughter born 11/2005
stage IV CKD 11/2005-6/2007
8/2007- PD cathater inserted
9/2007- revision of PD Cathater
10/2007 started PD
Adam_W
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Me with Baron von Fresenius

« Reply #12 on: April 16, 2012, 10:23:46 PM »

Thanks for the encouragement. One thing I'm going to be doing that will help me improve, especially mentally, is volunteering at the dialysis centre in my town (I actually go to a different one out of town) or possibly the local hospital. Since I've temporarily switched to in-centre dialysis, I've had way more human contact, and that has helped my mental health a lot. When I go back to HHD, I want to continue to have that social interaction. I can't be a patient at the centre in my town without losing my doctor (and my self-care ability), but I would love volunteering there. I volunteered at my old home dialysis centre several years ago and loved it. So, Lord willing, I think things are going to continue to improve for me. 
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-Diagnosed with ESRD (born with one kidney, hypertension killed it) Jan 21st, 2007
-Started dialysis four days later in hospital (Baxter 1550-I think, then Gambro Phoenix)
-Started in-centre dialysis Feb 6th 2007 (Fres. 2008H)
-Started home hemo June 5th 2007 (NxStage/Pureflow)
-PD catheter placed June 6th 2008 (Bye bye NxStage, at least for now)
-Started CAPD July 4th, 2008
-PD catheter removed Dec 2, 2008-PD just wouldn't work, so I'm back on NxStage
-Kidney function improved enough to go off dialysis, Feb. 2011!!!!!
-Back on dialysis (still NxStage) July 2011 :(
-In-centre self-care dialysis March 2012 (Fresenius 2008K)
-Not on transplant list yet.


"Don't live for dialysis, use dialysis to LIVE"
cassandra
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Posts: 4974


When all else fails run in circles, shout loudly

« Reply #13 on: April 17, 2012, 09:07:09 AM »

I think that's a marvelous idea. Just yesterday I was thinking of the same idea, to do when I start HHD with Nxstage. Could be a while yet, but .... Keep strong Adam, you sound well good.

love Cas
Logged

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
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