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Author Topic: Hi Everyone!!  (Read 2954 times)
mcmkids
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« on: February 16, 2009, 05:17:51 PM »
Hi Everyone! My name is JoAnn. My husband Matt, just started PD about 6 weeks ago. He is 44 years old. We live about 25 miles southwest of Philadelphia. Last April quite suddenly, he was diagnosed with a very rare cardiac sarcoma. The tumor was removed from his left atrium and he subsequently went through 6 rounds of chemotherapy. During his sixth and final round of chemo, he developed a very serious GI infection and became dehydrated. The dehydration caused ATN which caused his kidneys to fail. The doctors are (believe it or not) still hopeful that he will regain function. They were trying to wait it out because he was without any symptoms of uremia even though his creatinine was over 7. Then a week before Christmas it happened, his creatinine flew up to 9 and he started to have all of the classic uremia symptoms. There was no other choice but to start PD. Needless to say, this has overwhelmed us and we are still trying to cope. The silver lining in all of this is that I am a Registered Nurse, so I can take care of all of his needs at home. The dialysis really has made him feel much better, but he is having body image issues related to the catheter and he HATES the cycler. The nights that we have had no alarms are few and far between. The last two nights were pure hell and I now hate the words "low drain volume"! After speaking with our PD nurse again this morning and making yet another adjustment to the cycler, we are hoping for some sleep tonight. We will be going into Philadelphia tomorrow morning for his first adequacy test, so we are in the process of clooecting a 24 hour urine and I am also collecting a PD fluid drainage sample. Obviously we are hoping for some good news tomorrow! Really I am just looking for support and to be able to have him realize that he is certainly not alone in all of this. Thank you for allowing me to tell our story and I hope to connect with as many of you as I can in the future!! :thx;
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aharris2
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Volcan Pacaya, Guatemala
« Reply #1 on: February 16, 2009, 05:32:13 PM »
 :welcomesign; to IHD
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Life is like a box of chocolates...the more you eat the messier it gets - Epofriend

Epofriend - April 7, 1963 - May 24, 2013
My dear Rolando, I miss you so much!
Rest in peace my dear brother...
monrein
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Might as well smile
« Reply #2 on: February 16, 2009, 05:40:30 PM »
Welcome JoAnn.  So sorry to hear about all the difficulties your husband (and of course you) have been having and I hope you'll find this site as useful as the rest of us do.  Look forward to your posts.
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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
pelagia
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« Reply #3 on: February 16, 2009, 05:52:31 PM »
 :welcomesign; to IHD.  You will find many folks here experienced with PD.  Check out the threads, or try searching from the home page.  Hope it goes well tomorrow.  And, I hope that you get a good night of sleep soon!
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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
Romona
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« Reply #4 on: February 16, 2009, 06:20:10 PM »
 :welcomesign;
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peleroja
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I have 16 hats, all the same style!
« Reply #5 on: February 16, 2009, 06:26:21 PM »
Welcome aboard.  This is a great place to get information and find shoulders to cry on.  Come on back and post often!
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Dan.Larrabee
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Dialysis Dan
« Reply #6 on: February 16, 2009, 10:48:15 PM »
 :waving;
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AKA Dialysis Dan
Feeling the best I can because of Home Hemo
Doing it the best way I can by making it Nocturnal
Sharing it to help everyone feel they best they can
www.youtube.com/dialysisdan
Joe Paul
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« Reply #7 on: February 16, 2009, 11:06:30 PM »
Welcome JoAnn, 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
mcmkids
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« Reply #8 on: February 17, 2009, 03:54:57 AM »
Thank you for your warm welcome! Last night was AGAIN, a horror. 3 hours of lost dwell times, endless alarms. Thanks to Angie at Baxter for trying to help me through! I think that since there is no fibrin and the fluid is clear and Matt is not in pain or constipated, we may be looking at something internal with catheter positioning. I still think he is absorbing some of this fluid. We did his 24 hour urine and before we went to bed he had like 1000 ml in the jug and once he started his treatment, he put out like 2000 ml more. (that jug is heavy!!) So now I am going to get ready to go into Philly (always a joy! :banghead;) the dialysis center is right across from the Liberty Bell and Independence Hall, so there is a lot of traffic around. Let's hope that after three sleep deprived nights they think of SOMETHING! Have a great day everyone! :flower;
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twirl
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« Reply #9 on: February 17, 2009, 04:24:49 AM »
glad to know you
and we can help
stay with us
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willieandwinnie
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« Reply #10 on: February 17, 2009, 04:49:07 AM »
 :welcomesign; JoAnn. We are glad you found us and good luck today with the appointment. Please let us know how things go.  :cuddle;
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"I know there's nothing to it, but I want to know what it is there's nothing to"
Tinah1968
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ME
« Reply #11 on: February 17, 2009, 06:56:15 AM »
 :welcomesign;
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Tina
Fistula Oct 2007
Started Dialysis May 22, 2009
Wenchie58
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Always carrying the big silly grin!
« Reply #12 on: February 17, 2009, 07:38:08 AM »
Hi JoAnn...glad to have you with us!
 :welcomesign;
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Live your life in such a way that when your feet hit the floor in the morning Satan shudders and says "Oh s**t, she's awake!"

Right nephrectomy 1963
Diagnosed ESRD 2007
"Listed" summer 2007
Transplant 3/6 match  10/24/08
paul.karen
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« Reply #13 on: February 17, 2009, 07:43:07 AM »
 :waving; JoAnn & Matt

Glad to have you here at IHD.
Hope to see you on many of the threads.
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Curiosity killed the cat
Satisfaction brought it back

Operation for PD placement 7-14-09
Training for cycler 7-28-09

Started home dialysis using Baxter homechoice
8-7-09
Ang
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« Reply #14 on: February 18, 2009, 05:25:39 PM »
 :welcomesign;  joann & matt
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live  life  to  the  full  and you won't  die  wondering
Bajanne
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Goofynina and Epoman - Gone But Not Forgotten

WWW
« Reply #15 on: February 19, 2009, 09:50:18 AM »
Welcome to our community, JoAnn!  Really glad you found us and decided to join us.  You will find this an excellent place for information, for support and even for some fun.  You will find that this is not just a website; it is a genuine caring and sharing family  :grouphug;  There are cybershoulders to cry on, cyberhands to hold yours as you go through your challenges.  Just keep reading and keep posting, so we will know how Matt is doing.
Looking forward to hearing from you,




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;
paul.karen
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« Reply #16 on: February 19, 2009, 11:27:43 AM »
 :waving; Joann & Matt

Glad you found us.  THis is the place to get all the support and info you could want.
Hope to see you on many threads.
P&K
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Curiosity killed the cat
Satisfaction brought it back

Operation for PD placement 7-14-09
Training for cycler 7-28-09

Started home dialysis using Baxter homechoice
8-7-09
thegrammalady
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« Reply #17 on: February 19, 2009, 11:31:48 AM »
welcome, this is a great place to land
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s
......................................................................................
If you can smile when things go wrong, you have someone in mind to blame.

Lead me not into temptation, I can find it myself.

Life isn't about waiting for the storm to pass, it's about learning how to dance in the rain.

Some mistakes are too much fun to only make once.

Meddle Not In The Affairs Of Dragons
For You Are Crunchy And Taste Good With Ketchup
kellyt
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« Reply #18 on: February 19, 2009, 11:39:55 AM »
 :waving;    Welcome!  It's great to have both you and your husband with us.  You'll find lots of support and information here.
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1993 diagnosed with glomerulonephritis.
Oct 41, 2007 - Got fistula placed.
Feb 13, 2008 - Activated on "the list".
Nov 5, 2008 - Received living donor transplant from my sister-in-law, Etta.
Nov 5, 2011 - THREE YEARS POST TRANSPLANT!  :D
jessup
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Gemma - the tucker monster
« Reply #19 on: February 21, 2009, 01:37:16 PM »
G'day and  :welcomesign;
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