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Noeyjerd
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« on: January 26, 2016, 10:04:34 AM »

My name is Joey and I have been on hemodialysis since October 2015. When I started I got sick every single night I was on it. I wanted to know if it was just me or if it happens so my wife and I searched on google. These forums came up with people talking about the same stuff that was happening to me so it put my mind at ease. Other questions I had these forums and it's members gave me the answers I was seeking even when there is no medical documented info about said questions. I've decided to join since I too hate dialysis. I am male, 34 years old. I was supposed to do peritoneal dialysis but before I could get the cath I had a heart attack. They did a heartcath and found 90% blockage so they had to put 3 stents in my heart. I am now on blood thinners that scares a lot of surgeons so no one would agree to do the peritoneal cath. I have the port in my neck because they had to do an emergency cath. I was 4th place in line to get said cath but I started throwing up blood and that shot me to number one. Next month I am doing a stress test to see if my heart is better to get on the pancreas/kidney combo transplant list. I just want to say thank you for the answers that I got from all of you and I am happy to be a part of such a great website helping each other through these tough times.



If you can't post gofundme links please feel free to delete it. I read the site rules and it didn't mention it.







Edited: Gofundme site link deleted-kitkatz-Admin
« Last Edit: January 26, 2016, 03:23:58 PM by kitkatz » Logged
cassandra
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« Reply #1 on: January 26, 2016, 11:52:31 AM »

Welcome to the site Joey

    :welcomesign;


Take care, 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
Rerun
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« Reply #2 on: January 26, 2016, 12:25:13 PM »

Welcome, and I am so glad you found us.  I don't think there was such a thing as "gofundme" back in 2005 when the site was started.  I will ask Kitkatz about that.  She is the big Cheese around here.  Sounds like you have been through a lot.  Keep reading and learning.

Welcome - Rerun, Admin.

 :welcomesign;
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kitkatz
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« Reply #3 on: January 26, 2016, 03:23:01 PM »

I have deleted the gofundme.com link due to ihatedilaysis.com site not being the place to ask for donations for akidney patient.  We are all involved in some way with kidney disease and need money for ourselves and treatment as it is.


kitkatz-Admin
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Ivanova: "Old Egyptian blessing: May God stand between you and harm in all the empty places you must walk." Babylon 5

Remember your present situation is not your final destination.

Take it one day, one hour, one minute, one second at a time.

"If we don't find a way out of this soon, I'm gonna lose it. Lose it... It means go crazy, nuts, insane, bonzo, no longer in possession of ones faculties, three fries short of a Happy Meal, wacko!" Jack O'Neill - SG-1
Noeyjerd
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« Reply #4 on: January 26, 2016, 04:09:32 PM »

Ok no problem. That is what I thought. Just didn't see it in the rules of the forum but if it wasn't updated since 2005? I could see why it wasn't there heh. I will post my full story here then. (( and i got rid of the signature :D ))

It all started when I was diagnosed with pancreatitis at the age of 11. I had a seizure 2 years later, and my blood sugar was around 400-500, which led to a diagnosis of type 1 diabetes.

Fast forward 20 years to today; now, alongside the diabetes, I have developed end stage renal disease, CKD anemia, heart disease (CHF), and coronary artery disease with significant blockage. I guess the CAD and CHF go hand in hand, same for the diabetes and end stage renal failure plus CKD anemia.

(Oct 9) is when I went into end stage renal due to an acute kidney injury. I had so much fluid built up that I had a minor heart attack. I was in the hospital for a few hours waiting to get a catheter to start dialysis but I started throwing up blood and whatever fluid was stuck inside of me. They put in an emergency catheter through my neck, and whisked me off to dialysis.

A few days later I had the regular tunneled catheter put in. At this point the doctors stated it was unsafe for me to do the procedure to put stents in to prevent another heart attack because my hemoglobin was so low. This resulted in a headache because I'm trying to get on the list for a kidney/pancreas transplant (which is caused the acute kidney injury in a roundabout way) and they try to limit blood transfusions.

However, it was urgent that I get the stents which meant a choice between fixing the problem I was facing right then and hope I'm not compromising my chance for a transplant or wait for my hemoglobin to rise naturally and possibly have another heart attack. I discussed it with my wife and we decided on the transfusion, and the next day I got 3 stents in my heart.

I am going to a great place 3 times a week for 4 hours for hemodialysis while I wait until it is safe for me to get my catheter for peritoneal dialysis.
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Charlie B53
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« Reply #5 on: January 27, 2016, 08:35:43 AM »


Welcome to IHD!  Glad you found us and joined.  You will find loads of information here posted by others that have similar problems.   There is no one size fits all treatment, and no permanent cure.  Only Dialysis to keep on going.  Transplant is  another treatment mode.  No guarantee how long the transplanted organ(s) will last.  Some are still doing fine after many many years, while others seem to fail for no foreseeable reason.

Here at IHD we have a place we can share all or trials, successes, and failures, in hopes of easing the anxieties of fellow members.   As with libraries, there is so much information it can seem overwhelming to read it all.  I find myself coming back spending much of my free time in here reading and learning.

I started PD 2 1/2 years ago, fortunately all has been going according to plan with no real problems.  So far, so good.   I hope your Surgeon will still place your  PD cath and after training and an period of time for the cath to heal you can change over to PD.  It is working well for me, I hope it may be just as effective for you also.

Take Care,

Charlie B53


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