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QualMod
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« on: July 29, 2016, 01:16:58 PM »

Hi all, I have been lurking on here and reading all of the great questions and advice for a long time, but am just about to enter the "adventure" of dialysis so thought it was about time to do a formal intro! I live in San Francisco Bay Area.

I have failing kidneys due to high blood pressure. My grandmother had high blood pressure and died as a result of complications due to kidney failure, so I think this might be a hereditary trait? Poor skinny, little British veins! :)   

I had high blood pressure for a few years, I was on meds, but my primary care physician did not communicate to me that blood pressure can affect kidneys OR that my labs showed progression to kidney failure (they had labs over 3 years clearly showing decline, but no one at my doc's office ever told me!).  :banghead; Anyway, one day, when my doctor's office started an online patient portal, I had access to my lab #'s and Googled flagged things I had never heard of; creatinine and GFR?  Much to my surprise, I discovered I was in Stage 4 kidney failure (29 GFR at that point) --what!??  At that point, it was too little too late.  Now I am at 7-8 GFR and about to have PD catheter surgery. I am a frequent biz traveler (and I mean VERY frequent - running through airports on back to back days after a 14 hour work day), and self-employed, so my biggest challenge will be how to survive financially.

My mission in life is to make lemonade out of lemnons. I tell everyone I meet (cab drivers, airport personnel, wait staff, friends, strangers on the bus - everyone!) to CHECK THEIR BLOOD PRESSURE AND ASK FOR RENAL LABS!! If I can save one life, then there is a silver lining to all of this! I am also on a crusade to get every person I know to register as a donor!  :cheer:

I look forward to conversing with others here on the board!
S.
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Keeping the "Viva" in Survival :)
kickingandscreaming
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« Reply #1 on: July 29, 2016, 02:18:25 PM »

Welcome, QualMod.  Sounds like you have matters pretty much under control (such that that is possible). I too am doing PD as of January.  And I had a similar experience (that I learned retroactively) that my creatinine had been creepng up and no one thought that was important enough to tell me. After all, it's MY body!  I too think I'm in this boat due to uncontrolled high BP, but no one seems to care what the cause was.

I hope your transition is smooth and that you can modify your work life so it can continue to support you.
K&S
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Diagnosed with Stage 2 ESRD 2009
Pneumonia 11/15
Began Hemo 11/15 @6%
Began PD 1/16 (manual)
Began PD (Cycler) 5/16
QualMod
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« Reply #2 on: July 29, 2016, 03:29:58 PM »

Thanks KickingAndScreaming for the welcome! I am sorry to hear that you were not told either. I am starting to think this happens in a lot of cases. In a support group that I was in, 3 people had the same thing - slowly declining kidneys that their doctor never told them about until it was too late. What is up with that?? Ugh.
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Keeping the "Viva" in Survival :)
Michael Murphy
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« Reply #3 on: July 29, 2016, 05:59:24 PM »

Sorry about your coming dialysis but it is what it is, my experience was just the opposite. I listened to doctors for years about my declining gaff and my climbing creatine.  My feeling was you can't do ant thing about it so let it go.  About 5 years ago I was told I was on the cusp of starting dialysis and had my fistula installed. For the next two years every month I was lectured that it was time to start.  I kept telling the doctor I was waiting for a sign from God.  I didn't tell him I felt that a sign would be a symptom one day I got my sign and called to start dialysis. The funny part was my doctor sent me to a clinic attached to a hospital.he felt that since I was so difficult to get started he felt I was going to be non complient and would need to be hospitalized.  Fooled him compliment and resonantly healthy, keep a positive attitude and I worked for the first two years I was on dialysis, the only reason I retired was when I ran the numbers working did not make sense.
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DayaraLee
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« Reply #4 on: July 29, 2016, 06:28:30 PM »

I am starting to think this happens in a lot of cases. In a support group that I was in, 3 people had the same thing - slowly declining kidneys that their doctor never told them about until it was too late. What is up with that?? Ugh.

Hello, QualMod! You do sound like you have a great handle on things. I agree with you - I believe that many PCPs don't inform patients in a timely manner (or with the appropriate level of seriousness). My husband first found out he had kidney disease when he was casually referred to a nephrologist. She said something like, "Don't worry. He'll just monitor you every six months, and if you need it in 20 or 30 years, you'll get a transplant." So... That easy, huh?   :sarcasm;  I'm grateful for the people here, their experiences, and their willingness to share it! If some doctors aren't very forthcoming, you've got to find the information you need on your own.

 :welcomesign;
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My husband is the one with CKD, but I'm who needs the coping strategies!
CKD Stage 3A, Diabetes Type II, Hypertensive, Stubborn...

"What is love? Love is the absence of judgment."  ~Dalai Lama
supertramp1228
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« Reply #5 on: July 29, 2016, 11:26:58 PM »

 :welcomesign;hello.QualMod.IM NEW ON IHD TOO.HOPE WE BOTH FOUND WHAT WE QUESTIOED HERE.IM A CHINESE AND I BEEN DIALYZE FOR 2.5 YEAR THUS FAR.HEARD U ARE A FREQUENT BIZ TRAVELER.FEEL FREE TO ASK IF U NEED TREATMENT WHEN U TRAVEL TO CHINA.I BE RIGHT HERE TO HELP.  :2thumbsup;
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There is only one perfect road,it is ahead of u,always ahead of u.
cassandra
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When all else fails run in circles, shout loudly

« Reply #6 on: August 05, 2016, 04:58:50 AM »

Welcome to the site QM


     :welcomesign;


Good luck on your journey(s), 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
       still on waitinglist, still ok I think
Charlie B53
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« Reply #7 on: August 05, 2016, 08:07:52 AM »

Welcome to IHD.  We are glad you finally decided to join our family of kidney survivors.

I see you have decided on PD as your treatment.  I made that same choice a little over three years ago and it has worked out very well for me.  But I am not much of a traveler.  I do go spend a few days at Daughters house a few times a year. Loading up my machine and all the boxes of solution I need for the duration.  You should only need to take your machine and maybe a few of the smaller supplies as Baxter will make arrangements to have the bags of solution delivered where ever in the U.S. you need.  Of course advance notice/arrangements must be done.  I don't know how much lead time is required but that should all be able to be worked out.

Pay attention at training.  Infection prevention is CRITICAL.  Internal infection can cause damage to the peritoneal membrane sufficient to terminate PD and force you into going to hemodialysis.  Clean hands, always, makes a world of difference.  I'm a little over three years already, so far, so good.  As long as you stay vigilant you should be fine.

Take Care,

Charlie B53
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