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Author Topic: My Intro  (Read 3700 times)
Restorer
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« on: September 24, 2008, 08:33:36 PM »

Hi, my name is Matt. I'm 23, living and going to college in Santa Barbara, California. I was diagnosed last March with kidney failure. They found masses in my kidneys, and attempted three percutaneous biopsies, but came up with no conclusive answers as to what was really wrong. In June, I went to UCLA for an open biopsy/partial nephrectomy. The surgeon removed the largest mass from my left kidney, and after weeks of pathology tests, they didn't have any more useful information. My kidney failure didn't improve, so my official diagnosis became ESRD from interstitial nephritis of unknown etiology.

Several months ago, it was decided that my kidney function had degraded enough that I really couldn't go on any further without dialysis. I had been doing quite a bit of my own research, and decided that I definitely wanted to do PD instead of hemo. On August 1, between summer class sessions, I had the surgery to put my catheter in. The labs I drew for that surgery, the week before, showed my creatinine at 18.5. We took it slowly and after about a week we flushed the catheter.

Over the next three weeks we tried filling and draining, but it wasn't working so well. It was somewhat painful to both drain and fill, and filling was slow. After the first attempt, it stopped draining completely. Nothing we tried made it drain, so I was scheduled for an x-ray with contrast in the catheter. The x-ray showed that the catheter was entangled in omentum, and might've been blocked with fibrin. I was set up for another surgery, laparoscopic, to untangle the catheter. During the surgery, they decided that it would be easier to just replace the catheter entirely, so that's what they did, with the new catheter going through the same exit site. That surgery was one week ago.

They kept me at the hospital overnight after my surgery, but I won't go into my rant about hospital stays. Yesterday, I tried out the new catheter at the dialysis clinic. It seemed to work. I had to control the flow tightly to prevent pain (probably because it's so soon after my surgery), but I managed to repeatedly fill and drain small amounts.

Today my lab results came back, and I got a call early in the morning from the PD nurse. My creatinine on Monday was at 21. I had been feeling nauseous the last few days, so she wanted to fix that ASAP. She trusted me enough to have me do an exchange on my own at home. When I visited the clinic later today, I did another exchange there, and took the training final, and got signed off on everything else I needed to certify me to be an independent CAPD patient.

So now I'm officially a CAPD patient, as of today. I'll be spacing out my exchanges however they fit the rest of tonight, and tomorrow and Friday I'll be doing four spaced evenly all day. I'm supposed to get on a cycler very soon, and then use the cycler at night as well as do two exchanges during the day - so many because my exchanges are so small, 500-700 ml. Eventually they'll get bigger, and my creatinine will go down, and I'll transition to just using the cycler at night.
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- Matt - wasabiflux.org
- Dialysis Calculators

3/2007Kidney failure diagnosed5/2010In-center hemodialysis
8/2008Peritoneal catheter placed1/2012Upper arm fistula created
9/2008Peritoneal catheter replaced3/2012Started using fistula
9/2008Began CAPD4/2012Buttonholes created
3/2009Switched to CCPD w/ Newton IQ cycler            4/2012HD catheter removed
7/2009Switched to Liberty cycler            4/2018Transplanted at UCLA!
Joe Paul
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« Reply #1 on: September 25, 2008, 12:05:55 AM »

Welcome Restorer, good to have you aboard.
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"The history of discovery is completed by those who don't follow rules"
Angels are with us, but don't take GOD for granted
Transplant Jan. 8, 2010
mikey07840
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« Reply #2 on: September 25, 2008, 03:41:50 AM »

Welcome Restorer. I am also on CCPD and started with CAPD. Please let me know if you have any questions or concerns.
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06/85 Diagnosed with type 1 Diabetes
10/04 Radical Nephrectomy (Kidney Cancer or renal cell carcinoma)
02/08 Started Hemodialysis
04/08 Started Peritoneal Dialysis (CAPD)
05/08 Started CCPD (my cycler: The little box of alarms)
07/09 AV Fistula and Permacath added, PD catheter removed. PD discontinued and Hemodialysis resumed
08/09 AV Fistula redone higher up on arm, first one did not work
07/11 Mass found on remaining kidney
08/11 Radical Nephrectomy, confirmed that mass was renal cell carcinoma
12/12 Whipple, mass on pancreas confirmed as renal cell carcinoma

• Don't Knock on Death's door; Ring the bell and run away. Death hates that.

• I'm not a complete Idiot -- some parts are missing.
willieandwinnie
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« Reply #3 on: September 25, 2008, 04:28:45 AM »

 :welcomesign; Matt. I'm sorry about your ESRD, but really happy that you have found us. We are a great group with all kinds of information and support. Hope you stick around and we hear more from you.  :cuddle;
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"I know there's nothing to it, but I want to know what it is there's nothing to"
monrein
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« Reply #4 on: September 25, 2008, 04:39:56 AM »

 :welcomesign;  to IHD Matt.  You've come to the right site for info and support about ESRD and all it's complications.  I look forward to hearing more from you.
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Pyelonephritis (began at 8 mos old)
Home haemo 1980-1985 (self-cannulated with 15 gauge sharps)
Cadaveric transplant 1985
New upper-arm fistula April 2008
Uldall-Cook catheter inserted May 2008
Haemo-dialysis, self care unit June 2008
(2 1/2 hours X 5 weekly)
Self-cannulated, 15 gauge blunts, buttonholes.
Living donor transplant (sister-in law Kathy) Feb. 2009
First failed kidney transplant removed Apr.  2009
Second trx doing great so far...all lab values in normal ranges
devon
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« Reply #5 on: September 25, 2008, 06:05:11 AM »

Wow!  You sure took the Advanced Placement Kidney Tech 101 course!  My sympathies for sure!

I enjoyed reading your post.  "A+"

Welcome to IHD, Matt. I am sorry for the circumstances that bring you here but glad you're here nontheless.

-Devon
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lruffner
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« Reply #6 on: September 25, 2008, 08:13:29 AM »

Welcome Matt-

I hope you feel better soon, so that you can get back to your normal activities. I would love to hear how your progress with PD, as I will be starting some form of dialysis in the future.
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Diagnosed w/ primary fsgs- June 2007
Getting ready to begin transplant work-up at IU and Jewish-9/08

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« Reply #7 on: September 25, 2008, 11:42:05 AM »

Welcome to our community, Matt!  I am so glad that you found us.  I am sorry that you had to face such a challenge at such a young age.  I was 55 when my kidneys failed (three years ago)  I don't pretend to be able to understand what it is like at your age.  But there are a few here in your age group.  My caring thoughts are with you all the way.  As I quoted from an introduction, this is 'a place to vent, cry, laugh, and get informed'.  Please make use of it.  we consider ourselves a real family  :grouphug;  Looking forward to hearing from you as you let us know how you are doing.



Bajanne, Moderator
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I LOVE  my IHD family! :grouphug;
annabanana
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« Reply #8 on: September 25, 2008, 12:03:15 PM »

 :welcomesign; Matt!
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caregiver to Randy:
HepC and stage 4 ckd
1 kidney removed (cancer)Aug07
paris
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« Reply #9 on: September 25, 2008, 12:04:01 PM »

Hi Matt.  I hate that at 23 you are dealing with all of this.  You seem to have a good grip on the situation and have taken control of your situation.  Many here do PD and are willing to share their experiences.  Members are quick to answer questions, so please use this forum as another learning tool.  We all take care of each other and are a great support system.  I look forward to hearing more about your experience.  We are so glad you found this site and joined us.   :grouphug;





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It's not what you gather, but what you scatter that tells what kind of life you have lived.
boxman55
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« Reply #10 on: September 25, 2008, 04:48:54 PM »

Welcome Matt, thanks for joining IHD. We look forward to your posts.

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"Be the change you wished to be"
Started Hemodialysis 8/14/06
Lost lower right leg 5/16/08 due to Diabetes
Sister was denied donation to me for medical reasons 1/2008
G-Ma
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« Reply #11 on: September 25, 2008, 04:52:27 PM »

 :welcomesign;
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Lost vision due to retinopathy 12/2005, 30 Laser Surg 2006
ESRD diagnosed 12/2006
03/2007 Fantastic Eye Surgeon in ND got my sight back and implanted lenses in both eyes, great distance & low reading.
Gortex 4/07.  Started dialysis in ND 5/4/2007
Gortex clotted off Thanksgiving Week of 2007, was unclotted and promptly clotted off 1/2 hour later so Permacath Rt chest.
3/2008 move to NC to be close to children.
2 Step fistula, 05/08-elevated 06/08, using mid August.
Aug 5, 08, trained NxStage and Home on 9/3/2008.
Fistulagram 09/2008. In hospital 10/30/08, Bowel Obstruction.
Back to RAI-Latrobe In Center. No home hemo at this time.
GOD IS GOOD
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« Reply #12 on: September 25, 2008, 06:38:02 PM »

Welcome to IHD Restorer,

You sure have been walking a tightrope haven't you. Sorry you had to go through the surgery twice but glad things are working out for you. You have joined the fastest growing message board of it's kind here and I hope you learn a great deal from us. Feel free to browse and ask questions whenever you need to. We are here for you 24/7, 365.

Sluff/Admin
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pelagia
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« Reply #13 on: September 25, 2008, 06:49:27 PM »

 :welcomesign; to the IHD family.  You've been through a lot. 

Are you going to be able to stay in school?  Are you at UCSB?  That's a great school and a great place to go to school.
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As for me, I'll borrow this thought: "Having never experienced kidney disease, I had no idea how crucial kidney function is to the rest of the body." - KD
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Martin (the snorer) & Mack (cat w/renal failure)

« Reply #14 on: September 25, 2008, 09:05:14 PM »

 :welcomesign;
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Happily Married for 11 Wonderful Years!!! :-)
3/01 diagnosed with fsgs
7/07 listed
4/08 fistula surgery
10/08 pd catheter placed
12/08 started pd
2/09 started hemo
Restorer
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« Reply #15 on: September 29, 2008, 09:24:41 PM »

I am going to UCSB. When my health started declining a few years ago, I started doing worse in classes. All said, I ended up screwing up my GPA over a couple of quarters, and had to take a couple years off. Since last year I've been taking classes at various community colleges, and more recently, summer classes at UCSB, in order to earn my reinstatement. I finally got readmitted for this fall quarter, and now I'm starting (again) on my junior year of my Computer Science degree. I feel like now that I'm on dialysis and getting regular EPO, I'll be able to do well enough to get my GPA back up and graduate.
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- Matt - wasabiflux.org
- Dialysis Calculators

3/2007Kidney failure diagnosed5/2010In-center hemodialysis
8/2008Peritoneal catheter placed1/2012Upper arm fistula created
9/2008Peritoneal catheter replaced3/2012Started using fistula
9/2008Began CAPD4/2012Buttonholes created
3/2009Switched to CCPD w/ Newton IQ cycler            4/2012HD catheter removed
7/2009Switched to Liberty cycler            4/2018Transplanted at UCLA!
Wallyz
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« Reply #16 on: September 29, 2008, 10:02:16 PM »

Good luck, welcome, sorry about the kidneys. 
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pelagia
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« Reply #17 on: September 30, 2008, 10:50:52 AM »

I am going to UCSB. When my health started declining a few years ago, I started doing worse in classes. All said, I ended up screwing up my GPA over a couple of quarters, and had to take a couple years off. Since last year I've been taking classes at various community colleges, and more recently, summer classes at UCSB, in order to earn my reinstatement. I finally got readmitted for this fall quarter, and now I'm starting (again) on my junior year of my Computer Science degree. I feel like now that I'm on dialysis and getting regular EPO, I'll be able to do well enough to get my GPA back up and graduate.

Great, I'm so happy to hear that you are able to continue your program.  Good luck with the semester.  :cheer:
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As for me, I'll borrow this thought: "Having never experienced kidney disease, I had no idea how crucial kidney function is to the rest of the body." - KD
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« Reply #18 on: October 02, 2008, 04:14:04 AM »

 :welcomesign;  matt


sounds  like  you 've  got  handle  on  it  all


good  luck  with  all  the  school stuff :thumbup;
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live  life  to  the  full  and you won't  die  wondering
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« Reply #19 on: October 08, 2008, 04:49:21 PM »

I am so glad that you are persevering with your studies.  My caring thoughts are with you. :cuddle;
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I LOVE  my IHD family! :grouphug;
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