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Author Topic: hello, again!  (Read 2047 times)
carson
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« on: September 12, 2008, 01:10:13 PM »
It's been almost a year since I've been on here. Lots has happened and I'm sure many new people have joined, so I thought I might re-introduce myself. I'm Lisa. When I was 14 I was a very sick girl. After many, many tests I was diagnosed with GN2 and almost immediately placed on PD. I did well on it until my transplant 9 months later. I lived a very good life for 15 yrs while my transplant worked it's wonders but eventually it slowed down to the point where I needed dialysis again. I felt as though I had lost a best friend. I cried and cried but I knew I had no choice. I started PD again in 1997. It went well for the first 9 yrs but eventually the changes in my membrane rendered PD useless and my doc convinced me Hemo would be my best option. Sooo, last Oct I had a central line put in and began hemo on my 41st birthday. I was so scared but once the blood started flowing and I realized it was painless I settled in. Now, it's been almost a year later. I have my Formula Hemodialysis machine at home and I dialyse 8 hours each night, 7 days a week. I have lost 15 kgs of water, I look and feel like a million bucks, and I am happy my previous neph. talked me into Home Hemo. So far I've still been using my central line without incident. I suspect one day they'll tell me I must change to a fistula. THAT I am REALLY afraid of as I'm sooooooooooooooooooooooooo scared of needles. In the meantime I'll just do my bes with the line and hope it all goes well!!
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2009 infection treated with Vancomycin and had permacath replaced
2009 septic infection that wouldn't go away
2007 began Nocturnal Home Hemo with Permacath
1997 began Peritoneal Dialysis
1982 had cadaver transplant
1981 diagnosed with GN2 and began Peritoneal Dialysis
Joe Paul
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« Reply #1 on: September 12, 2008, 01:21:30 PM »
Welcome Carson, good to have you aboard (again)
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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
willieandwinnie
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« Reply #2 on: September 12, 2008, 01:37:10 PM »
:welcomesign; again Carson. You have been through a lot. Could you tell us more about your Formula Hemodialysis machine or better yet, post a picture. We hope to hear more from you.  :cuddle;
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kimcanada
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« Reply #3 on: September 12, 2008, 02:57:53 PM »
Hi again Carson, I have missed your posts and wondered what happened to you... I am glad you are back, my doctor mentioned just today about me doing dialysis at home (hemo) he wanted me to think about doing 2 hours everyday.... it would be with needles tho,we will have to talk about it

 :flower;
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monrein
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« Reply #4 on: September 12, 2008, 04:29:55 PM »
Welcome back Lisa.  Sounds like things have been rough but not too bad for now.  Don't worry about the needles, you'll cross that bridge when you get to it.   :cuddle; :flower; :cuddle;
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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
Sluff
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« Reply #5 on: September 12, 2008, 05:32:23 PM »
Welcome back Carson it has been awhile. I hope your central line continues to serve you well until the next transplant.

Sluff/Admin
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paris
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« Reply #6 on: September 12, 2008, 06:22:28 PM »

Welcome back!  Sounds like you have had a very interesting year.  It is always good to hear how well home hemo works for someone.  It gives hope to many.  Thanks for sharing.  :grouphug;





Paris,moderator
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G-Ma
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« Reply #7 on: September 12, 2008, 07:39:57 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
Romona
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« Reply #8 on: September 12, 2008, 07:47:15 PM »
 :waving;
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Mimi
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« Reply #9 on: September 12, 2008, 09:00:50 PM »
Hi Carson, good to hear from you again.  So glad your home hemo is working out good for you.
You say you have a central line, is that the same as a neck cath?  My fistula never worked, so I
will have to decide to have a neck cath or a graft.  Glad to see you back and hope you keep on
posting.


Love, Mimi
 
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Death is not extinguishing the light;
it is putting out the lamp because the dawn has come.
Ang
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« Reply #10 on: September 13, 2008, 02:29:17 AM »
 :welcomesign;  back  carson
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live  life  to  the  full  and you won't  die  wondering
peleroja
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« Reply #11 on: September 13, 2008, 07:35:19 AM »
Welcome back, Carson.  I just happen to live in the city of Carson in California!  Come back and post often.
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Bajanne
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« Reply #12 on: September 13, 2008, 05:26:56 PM »
Welcome back!  So good to have you with us again.  I like the sound of that home hemo.  Well, now that you are back with us, I expect to hear more from you.  Welcome back! :grouphug;



Bajanne, Moderator
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"To be found in Him, not having a righteousness of my own ...but that which is based on faith"



I LOVE  my IHD family! :grouphug;
carson
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« Reply #13 on: September 17, 2008, 08:04:11 PM »
Thanks everyone for your warm welcomes! It's been an interesting year to say the least but I feel so much better now that I'm on hemo. There are a few posts asking me questions about the program and machine I'm on. I'll briefly explain:
I am on the Formula Hemodialysis machine made in Italy. It's about the size of most hemo machines but much bigger and more efficient than the Nxstage. I dialyze 7 days a week for 8 hours while I sleep on a very slow flow (300). I usually remove 1-2 kgs of fluid. When I wake up in the morning I am not washed out but I am very hungr! My BP is normal. My temp is normal. I can eat and drink anything I want. I had severe Hyperparathyroid issues before starting hemo. I took Sensipar for 3 months and now I am below normal in that dept. I am ENCOURAGED to eat more phos and calcium as they are too low. I still take Aranesp every couple of weeks and some iron too but not too much. The only meds I take are: 5mg Prednisone (from last transplant), Rocaltrol .25 mcg 3 times/wk, 2 Replivite and 1000mg of Glucosamine (I used to do heavy weights when I was well and now my joints hurt!!)
The line I have is inserted just below my collar bone and goes up into my neck, then down into my heart via the pulmonary artery. It is USUALLY a temp thing while the patient learns to use the needles, but I am SOOO very afraid of needles my doc has agreed to let me stay with the line until it's just not the best option. I'm hoping that day never comes!!
If I can get a pic of the Formula, I will put it on here for all to see.
Thanks for your interest.

KimCanada, we should talk!!!!
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2009 infection treated with Vancomycin and had permacath replaced
2009 septic infection that wouldn't go away
2007 began Nocturnal Home Hemo with Permacath
1997 began Peritoneal Dialysis
1982 had cadaver transplant
1981 diagnosed with GN2 and began Peritoneal Dialysis
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