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Author Topic: Where is everyone?  (Read 13759 times)
willowtreewren
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My two beautifull granddaughters

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« Reply #25 on: November 03, 2014, 07:54:11 PM »

I check in almost daily, too. Carl is 3 1/2 years out with his kidney. I'm think I may be out of the woods with Lyme disease. I'll know more when I see my Lyme doctor in December. I'm almost retired now, too. Carl retired in July. We pan on doing some serious traveling. We'll go to Newfoundland in July to visit with Del and Walter. We are also planning a trip to New Zealand to visit with Hanify's husband and daughter. They visited us before she died.

Life is good.

Aleta
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Wife to Carl, who has PKD.
Mother to Meagan, who has PKD.
Partner for NxStage HD August 2008 - February 2011.
Carl transplanted with cadaveric kidney, February 3, 2011. :)
PrimeTimer
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« Reply #26 on: November 04, 2014, 12:24:12 AM »

So many of our regular commenters have gone missing. Did they get better and move on? Did they die? Did we bore them or were we mean to them?

I guess I've become so tired of the meanness on the Facebook version of this board. I worry we have driven members away.
Along similar lines of (regards this new Topic here) thoughts, was:

http://ihatedialysis.com/forum/index.php?topic=18315.msg488079#msg488079

While I'm a relative newbie here, have really spent time reading the many posts here.

Now that the door to further thoughts has been opened, and the risk of being  pilloried for the saying, here goes:
Had noticed a number of trends taking place here.
While 'some' response comments here, are not intended to 'hurt', many do just that.
No, not just 'the thin' skinned, sensitive, folks.
Have detected sarcasms and what appears as downright cliquishness , in some instances.
I may be the only one with this perception.
Granted, it may not be by design that these things happen, yet over the long haul certain 'perceptions' did come to the fore.
Realized if I didn't like it, I should just move on.

Now, don't misconstrue what is being said here.
There are vast amounts of valuable dialysis and other experience's listed.

Great.

BUT...........

Yes, I've noticed, that I've throttled down my normal enthusiasm, and expectations doing any posts here.
Why!
Well, had to dig down deep, and as stated above, certain 'little' things, kept causing me to reword what was going to be posted. Spontaneity was gone.
So I went more toward the 'games', with very little responding to posed Topic questions.
Did read, way back in this forums time, that religious / spiritual type posts, caused some problems.
Did do a few posts here with my usual style, but soon dropped back to highly rewording the way my words came out.
The joy of responding with positive hopes, and posting my way was missing. 
Yes, do realize it was self imposed.

Bares repeating:
               Now, don't misconstrue what is being said here.
      There are vast amounts of valuable dialysis and other experience's listed.

So here I am.
Yes, is a fine line between fact, fiction, fantasy, myth, and engineered deception.
What might be part of the solution!
Well, I endeavor to NOT rain on anyone's parade by my choice of words.
One can be gentle, as opposed to harsh, when voicing an opposing view point.
Do like to toss in a higher Source at work, even in the face of not fully understanding the 'why' of it all.
Regardless, will not enter into any of the usual 'my pa can whip your pa', endless back and forth battles, that happen under these kind of forum circumstances.

What next! Not sure at this point.

Giggle, giggle, snort, snort, umph...ha ha...  I don't know why but that WAS sort of funny!  :rofl;
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Husband had ESRD with Type I Diabetes -Insulin Dependent.
I was his care-partner for home hemodialysis using Nxstage December 2013-July 2016.
He went back to doing in-center July 2016.
After more than 150 days of being hospitalized with complications from Diabetes, my beloved husband's heart stopped and he passed away 06-08-21. He was only 63.
kristina
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« Reply #27 on: November 04, 2014, 04:48:47 AM »

I check in almost daily, too. Carl is 3 1/2 years out with his kidney. I'm think I may be out of the woods with Lyme disease. I'll know more when I see my Lyme doctor in December. I'm almost retired now, too. Carl retired in July. We pan on doing some serious traveling. We'll go to Newfoundland in July to visit with Del and Walter. We are also planning a trip to New Zealand to visit with Hanify's husband and daughter. They visited us before she died.

Life is good.

Aleta

Hello Aleta,
I am very glad that Carl is doing so well and I am so glad that you are soon "out of the woods" with Lyme disease.
Please give Hanify's family my kind regards when you meet them. I admired Hanify's upbeat humour and her total positive look on life very much
and I was very impressed, how hard she tried, even though it was very clear from the very start, that she had a very difficult battle on her hand
with terminal cancer on one hand and dialysis plus the slow "close down" of her whole body on the other hand...
But nevertheless, she tried her very best to battle on another day and then another week and then another month ...
I never told her, but I kept my fingers crossed for her and I did hope very much for a long time that she might have a good chance...
Best wishes from Kristina.
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Bach was no pioneer; his style was not influenced by any past or contemporary century.
  He was completion and fulfillment in itself, like a meteor which follows its own path.
                                        -   Robert Schumann  -

                                          ...  Oportet Vivere ...
del
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del and willowtreewren meet

« Reply #28 on: November 04, 2014, 05:36:26 AM »

I still miss the chats with hanify  >:(  I can't wait for July when willowtreewren and Carl come to visit. :yahoo;  It will be so good to meet in person.  They will be treated to some of the Newfoundland culture.  I will be sure to post pictures!!!
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Don't take your organs to heaven.  Heaven knows we need them here.
willowtreewren
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My two beautifull granddaughters

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« Reply #29 on: November 04, 2014, 07:31:24 AM »

I still miss the chats with hanify  >:(  I can't wait for July when willowtreewren and Carl come to visit. :yahoo;  It will be so good to meet in person.  They will be treated to some of the Newfoundland culture.  I will be sure to post pictures!!!

We are looking forward to it, too.  :2thumbsup; And I'll have to take some Tennessee culture up to share!

Aleta
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Wife to Carl, who has PKD.
Mother to Meagan, who has PKD.
Partner for NxStage HD August 2008 - February 2011.
Carl transplanted with cadaveric kidney, February 3, 2011. :)
MooseMom
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« Reply #30 on: November 04, 2014, 07:44:31 AM »

WTW, I am so glad to hear that your battle with Lyme disease may be drawing to a close!!  That's brilliant news.

KarenInWA, I'm happy that your damaged kidney is still pootling along and that you are living life to its fullest. 
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"Eggs are so inadequate, don't you think?  I mean, they ought to be able to become anything, but instead you always get a chicken.  Or a duck.  Or whatever they're programmed to be.  You never get anything interesting, like regret, or the middle of last week."
skinnacat
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« Reply #31 on: November 04, 2014, 04:49:30 PM »

i have been looking on here for about 2 months and have noticed there is not alot of people posting questions
or talking about problems they may be having or just saying how everything is going...me personally i dont have a big support
group besides my husband so i am on here alot...plus i have so many questions about dialysis....i am one of those people that
likes to know just exactly what i am getting myself into....i am at the fence (so my neph says) and i will have to start dialysis
not looking forward to it...but the old kidneys just cant do it no more...i feel very isolated sometimes and thats another reason i
come here...so i remember that i am not alone....it helps me alot to know so many people get dialysis and its not the end of the road!!!!
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Rerun
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Going through life tied to a chair!

« Reply #32 on: November 04, 2014, 05:53:51 PM »

And that is why we are here and there are always enough members on to answer questions.

            :flower;
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Darthvadar
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« Reply #33 on: November 04, 2014, 11:49:17 PM »

I dunno. Maybe we should send Darthvader to "Alert all commands and calculate every possible destination along their last known trajectory..."  :P

You called???....  :rofl;

Darth....
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Cared for my late mum, Elsie who had Kidney Failure... Darling mum died on July 15th 2014... May her gentle soul rest in peace....
kristina
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« Reply #34 on: November 05, 2014, 03:02:52 AM »

i have been looking on here for about 2 months and have noticed there is not alot of people posting questions
or talking about problems they may be having or just saying how everything is going...me personally i dont have a big support
group besides my husband so i am on here alot...plus i have so many questions about dialysis....i am one of those people that
likes to know just exactly what i am getting myself into....i am at the fence (so my neph says) and i will have to start dialysis
not looking forward to it...but the old kidneys just cant do it no more...i feel very isolated sometimes and thats another reason i
come here...so i remember that i am not alone....it helps me alot to know so many people get dialysis and its not the end of the road!!!!
Hello skinnacat,
just to reassure you, I am also pre-dialysis and practically in the same boat...
I certainly don't look forward to ever start with dialysis, even though I know it is very much on the cards...
... Whenever I have a question about my kidney-situation, I ask on IHD...
...Not only because most of the people on IHD are patients as well, but like myself,
they are not professionally medically trained and we exchange kidney-information in a very understandable way,
sometimes even with a touch of humour, which is very important to keep whilst dealing with all that...
I also ask my nephrologist many questions and I have noticed,
that my informative exchange with IHD-members helps me a lot,
to ask the nephrologist my questions in a much more relaxed way,
because I know that I always can ask IHD-members as well...
I look at IHD as a "patients-safety-net-of information"
and I do send you all my good luck wishes,
Kristina.
« Last Edit: November 05, 2014, 03:04:12 AM by kristina » Logged

Bach was no pioneer; his style was not influenced by any past or contemporary century.
  He was completion and fulfillment in itself, like a meteor which follows its own path.
                                        -   Robert Schumann  -

                                          ...  Oportet Vivere ...
Maggie and Jeff
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Life as a Pincushion

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« Reply #35 on: November 05, 2014, 09:02:38 AM »

I'm also a member of a goldwing forum.

There have been similar discussions about less posters over the previous year and a less than helpful meanness from newer members and some of the older ones.

I think there like here many good folks are still here just not posting as much.

I also think the meanness is a reflection of our own hearts.

When we as a people turn our hearts away from God it changes the way we interact with others. 

God centered life vs self centered life.

I just feel this maybe part of the answer.

I've had car problems and no one stops anymore unless you stand in the middle of the road and make them stop.

I'm taking it as a sign of the times.
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The LORD is my light and my salvation--so why should I be afraid? The LORD is my fortress, protecting me from danger, so why should I tremble?

Jeff is the needle pusher Maggie is the pincushion.
Meinuk
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« Reply #36 on: November 05, 2014, 03:21:54 PM »

I'm really just a lurker here now.  I read the boards every day, and am in contact with a lot of people from IHD IRL too. I'm always THRILLED when I am visiting with patients and they talk about reading IHD. People may not be posting much, but as Rerun said, MANY people are reading.

As far as the ahem "spiroted" posting goes, EPOMAN was always up for a battle, and sometimes, those online skirmishes got my blood boiling enough to remind me that I am alive.  IHD will always be home to many of us, we've just ventured out in the world, and we can only make it back for holidays and certain weekends!

xo

Anna

(now 6 years post transplant!)
« Last Edit: November 05, 2014, 06:16:45 PM by Meinuk » Logged

Research Dialysis Units:  http://projects.propublica.org/dialysis/

52 with PKD
deceased donor transplant 11/2/08
nxstage 10/07 - 11/08;  30LS/S; 20LT/W/R  @450
temp. permcath:  inserted 5/07 - removed 7/19/07
in-center hemo:  m/w/f 1/12/07
list: 6/05
a/v fistula: 5/05
NxStage training diary post (10/07):  http://ihatedialysis.com/forum/index.php?topic=5229.0
Newspaper article: Me dialyzing alone:  http://ihatedialysis.com/forum/index.php?topic=7332.0
Transplant post 11/08):  http://ihatedialysis.com/forum/index.php?topic=10893.msg187492#msg187492
Fistula removal post (7/10): http://ihatedialysis.com/forum/index.php?topic=18735.msg324217#msg324217
Post Transplant Skin Cancer (2/14): http://ihatedialysis.com/forum/index.php?topic=30659.msg476547#msg476547

“To doubt everything or to believe everything are two equally convenient solutions; both dispense with the necessity of thought.” - Henri Poincare
Angiepkd
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« Reply #37 on: November 05, 2014, 06:08:04 PM »

I am still here!  I just don't feel like I have much to contribute since my transplant.  I am 8 months post tx and doing really well.  I do check in almost every day, but only post if I feel I can offer relevant info.  I am forever grateful for the amount of help and advice I received while on D and going through transplant testing.  I have also searched through the old topics for some post tx info.  This is the place to go for real information from real people.  Thank you all so much!  I can't imagine how I would have gotten through everything without you!   :thx;
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PKD diagnosis at 17
Cancer May 2011, surgery and no further treatment but placed on 2 year wait for transplant
October 2011 first fistula in left wrist
April 2012 second fistula in upper arm, disconnect of wrist
January 2013, stage 5 ESRD
March 2013 training with NxStage home hemo
April 2013 at home with NxStage
April 2013 fistula revision to reduce flow
May 2013 advised to have double nephrectomy, liver cyst ablation and hernia repair. Awaiting insurance approval to begin transplant testing. Surgery in June.
June 2013 bilateral nephrectomy.
August 2013 finishing testing for transplant, 4 potential donors being tissue typed.
January 2014 husband approved to donate kidney for me
March 4th 2014 received transplant from awesome hubby. Named the new bean FK (fat kidney) lol!  So far we are doing great!
cassandra
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When all else fails run in circles, shout loudly

« Reply #38 on: November 06, 2014, 02:49:22 PM »

Realy nice to hear from you Meinuk, and Angiepkd. And even better to hear y'all doing so well!

       :cheer:


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
Sugarlump
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10 years on and off dialysis

« Reply #39 on: November 09, 2014, 01:24:20 AM »

I have noticed a definite decrease in posting... maybe we all need updating!!! or the site!!! or the way we chat....
Personally I blame Rich (tongue in cheek here) as he used to be a prolific poster but I do understand how difficult it is to carry on
general posting after you have had a transplant, you almost feel guilty.

We need a sheaf of good (and prolific) posters to raise lots of dialysis topics and to breathe fresh life into the off topic section too (which I like for a bit of light relief)
I am ten years on in my dialysis career ... and I do think sometimes it's hard to see a way out of the gloom. But this site has helped me a lot, in being able to share my
experiences, both good and bad. Being able to rant freely about nurses and to discuss hot potato political issues as well is helpful to holding on to the things I have left,
not the things they have taken away...

Big hug to everyone on here  :grouphug;
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10 years of half a life
3 years HD 1st transplant Feb 08 failed after 3 months
Back to HD 2nd transplant Dec 10 failed after 11 months
Difficult times with a femoral line and catching MSSA (Thank you Plymouth Hospital)
Back on HD (not easy to do that third time around)
Fighting hard (two years on) to do home HD ... watch this space!
Oh and I am am getting married 1/08/15 to my wonderful partner Drew!!!
The power of optimism over common sense :)
PrimeTimer
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« Reply #40 on: November 09, 2014, 04:44:46 PM »

I am ten years on in my dialysis career ... and I do think sometimes it's hard to see a way out of the gloom. But this site has helped me a lot, in being able to share my
experiences, both good and bad.

I agree! Whether in-center or at home, dialysis IS like a career in the way that it is a commitment and responsibility. Wish friends and family could understand this.
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Husband had ESRD with Type I Diabetes -Insulin Dependent.
I was his care-partner for home hemodialysis using Nxstage December 2013-July 2016.
He went back to doing in-center July 2016.
After more than 150 days of being hospitalized with complications from Diabetes, my beloved husband's heart stopped and he passed away 06-08-21. He was only 63.
Joe
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« Reply #41 on: November 22, 2014, 07:01:16 PM »

Just to close the loop with everyone, I had my 1 year post transplant clinic on the 10th and everything came out fine. All my numbers were where they should be and the transplant team released me to my local Neph. It will be nice not to have to drive down to Denver every other month for clinic. And I don't have to see them for a year. It was a great day! On that Saturday, we took my donor out for a special dinner to celebrate both of our year anniversaries. It made it a great week.
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Live simply. Love generously. Care deeply. Speak kindly.
Leave the rest to God...
PrimeTimer
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« Reply #42 on: November 22, 2014, 08:26:43 PM »

Just to close the loop with everyone, I had my 1 year post transplant clinic on the 10th and everything came out fine. All my numbers were where they should be and the transplant team released me to my local Neph. It will be nice not to have to drive down to Denver every other month for clinic. And I don't have to see them for a year. It was a great day! On that Saturday, we took my donor out for a special dinner to celebrate both of our year anniversaries. It made it a great week.
Joe:  Congrats on passing your one year post transplant checkup! Pretty great that you took your donor out for dinner, what a neat story and a happy one at that!
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Husband had ESRD with Type I Diabetes -Insulin Dependent.
I was his care-partner for home hemodialysis using Nxstage December 2013-July 2016.
He went back to doing in-center July 2016.
After more than 150 days of being hospitalized with complications from Diabetes, my beloved husband's heart stopped and he passed away 06-08-21. He was only 63.
OlManRivah
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« Reply #43 on: November 23, 2014, 02:51:33 PM »

Hi Gang,

I'm fairly new to the Board but after my 3rd year in Dialysis, I consider myself a veteran.  I'm a member of quite a few Forums and I must admit I let this one slide.
I try to stop in once in awhile.

Cheers
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Country boys can survive!
Sugarlump
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10 years on and off dialysis

« Reply #44 on: November 24, 2014, 09:22:43 AM »

Spirited skirmishes are good for the soul  ;D
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10 years of half a life
3 years HD 1st transplant Feb 08 failed after 3 months
Back to HD 2nd transplant Dec 10 failed after 11 months
Difficult times with a femoral line and catching MSSA (Thank you Plymouth Hospital)
Back on HD (not easy to do that third time around)
Fighting hard (two years on) to do home HD ... watch this space!
Oh and I am am getting married 1/08/15 to my wonderful partner Drew!!!
The power of optimism over common sense :)
dublin
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« Reply #45 on: November 24, 2014, 12:07:38 PM »

No no one was driven away i would say things happen as myself had carpal tunnel i n both hands and 1 month ago i got surgery on one hand big big mistake felt every bit of the dam surgery so i do not type much o and i am a one finger stare at the key board typist so everything takes forever to type i would say they are all here still there is no other site anywhere that you can get this amount of info so i will say good luck and happy christmas and lovely new year to all on this site and their families good luck. :waving;
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rsudock
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will of the healthy makes up the fate of the sick.

« Reply #46 on: December 09, 2014, 05:11:57 PM »

Awww I'm one of the MIA people too. I'm so sorry. After transplant broke up with my then boyfriend took some time and therapy to reflect. 2nd year post transplant unfortunately diagnosed with a cancerous tumor in my liver. Pretty much screwed me up emotionally.  Been jumping through hoops to get on liver transplant list. I missed my friends here at IHD...the truest and most noblest people I know.
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Born with autosomal recessive polycystic kidney disease
1995 - AV Fistula placed
Dec 7, 1999 cadaver transplant saved me from childhood dialysis!
10 transplant years = spleenectomy, gall bladder removed, liver biopsy, bone marrow aspiration.
July 27, 2010 Started dialysis for the first time ever.
June 21, 2011 2nd kidney nonrelated living donor
September 2013 Liver Cancer tumor.
October 2013 Ablation of liver tumor.
Now scans every 3 months to watch for new tumors.
Now Status 7 on the wait list for a liver.
How about another decade of solid health?
jeannea
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« Reply #47 on: December 09, 2014, 10:11:50 PM »

Wow rsudock. That's really tough. Wish I could find great words to encourage you. I hope you have good people taking care of you.
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cassandra
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When all else fails run in circles, shout loudly

« Reply #48 on: December 10, 2014, 06:32:48 AM »



        :grouphug;             :grouphug;           :grouphug;


And lots of 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
monrein
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Might as well smile

« Reply #49 on: December 11, 2014, 03:00:58 PM »

Hey there rsudock. Just discovered this about your liver situation and I feel simply sad and awful that you're now dealing with that. I'm screaming here for you. Thinking of you and will continue to do so...your brother too is in my thoughts.
Logged

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
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