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Author Topic: Actually crossed my mind today about stopping hemodialysis....  (Read 1937 times)
bhall777
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« on: April 27, 2021, 04:20:51 PM »

I never thought that was cross my mind, but during treatment today i got a call from a transplant center saying they received a “Self Referral” at their office. Crazy thing is i never sent in a referral to any Transplant Center. I talked to a few people and friends about doing so, but never had my mind made up enough to go through with it.

You see this will be my 3rd transplant and im not sure if I wana go through with the process again because its just really taxing.

I actually thought i may want to go through with it after I got the call today and signed to let the clinic send over my medical files, but after thinking about it and talking with family, Im not sure I want to pursue it right now, if ever.

My mind keeps going back and forth... back and forth on the issue of getting a transplant again it actually gets to the point where im literally sick to my stomach.

I hate that! 

Im actually also having a hard time with hemodialysis as well, the grafts not working correctly, trouble with the needles, constantly lethargic and nauseous, thats why the thought actually went through my head today about “Do I even want to keep up with doing ANY of this anymore?”

Im 40 (41 in a week) years old and was also born Spina Bifida and have been through MULTIPLE major surgeries in my life NOT INCLUDING the 2 kidney transplants...


Im tired guys...

Im not gonna stop anytime soon so don't freak out on me...

Its not an immediate death wish by any means...

Just need some time and A LOT of prayers.
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iolaire
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« Reply #1 on: April 27, 2021, 06:02:52 PM »

Well options are better than none, but that doesn’t mean they are the ones that you want. Sounds like you are a survivor so I’m sure you will make good choices for yourself when the time is right. Best wishes.
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Transplant July 2017 from out of state deceased donor, waited three weeks the creatine to fall into expected range, dialysis December 2013 - July 2017.

Well on dialysis I traveled a lot and posted about international trips in the Dialysis: Traveling Tips and Stories section.
PrimeTimer
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« Reply #2 on: April 27, 2021, 06:09:59 PM »

Hang in there, bhall777! I don't have to be in your shoes to see that what you need is some support with decisions you make. Other than wanting to be able to drink as much water as he wants, my husband doesn't want to go thru the process of a transplant either. Fortunately he has a good working fistula (almost 8 yrs with just one) but he requires a lot of balloon jobs (angioplasties). But the balloon jobs are what have kept his fistula (and him) alive. I don't know how long you've had your graft but hope you give it more time. Perhaps it will start working better and settle down for you. Don't let frustration be your worst enemy and dictate your thoughts. Do what you set out to do when you had to resume dialysis. What are you able to do before/after treatments when you are home? Stuff like that.  Make goals, stay focused, make note of achievements (sometimes just getting up in the morning is an achievement), and look at what you could be doing or are able to do to help you see any positivity in each day. You may have to do things differently or see it in another light but it can be done. My husband and I have been doing that for quite some time now but took a very long time to get there. Seems that once we find a way to do or to accept something, we are able to move forward and that's our goal -just to keep moving forward so we don't get stuck. We try putting the bad stuff "in the rear view mirror" and look forward. So please give it more time (I know you already have) but break it all down and focus on one thing at a time. Figure out what thought process will help you move forward. And come here to vent or update us or ask questions. I get a lot of support from here and it helps me tremendously because I let it.

 :grouphug; :pray; Also saying prayers.

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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.
PrimeTimer
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« Reply #3 on: May 01, 2021, 09:09:21 PM »

How are you doing today bhall777? Hanging in there? Hope when you feel up to it you will come back to post and let us know.  :grouphug;
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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.
Hereware
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« Reply #4 on: May 03, 2021, 05:03:18 AM »

Hey there. Hope you're doing well. You'd feel better soon, don't give up just yet. Stay strong as you had been..
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Hereware
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« Reply #5 on: May 04, 2021, 08:09:11 PM »

I wish you all the best. Hopefully you are staying strong.
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Michael Murphy
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« Reply #6 on: May 04, 2021, 10:00:25 PM »

Let’s be honest dialysis sucks, but dead sucks even more.  The truth is dialysis is the most difficult the first year.  I was constantly being infiltrated at least once a month for the first 18 months. As my 2 year old fistula matured that part of dialysis got easier.  I have been on dialysis since 4/10/2013 that’s 8 years and every now and then I get a bad run of treatments and I begin to wonder if it’s worth it to continue the fight.  Hell yes it is, then when the treatments become easier again. Generally caused by my dry weight going up or down.
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Hereware
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« Reply #7 on: May 17, 2021, 11:08:00 PM »

Let’s be honest dialysis sucks, but dead sucks even more.  The truth is dialysis is the most difficult the first year.  I was constantly being infiltrated at least once a month for the first 18 months. As my 2 year old fistula matured that part of dialysis got easier.  I have been on dialysis since 4/10/2013 that’s 8 years and every now and then I get a bad run of treatments and I begin to wonder if it’s worth it to continue the fight.  Hell yes it is, then when the treatments become easier again. Generally caused by my dry weight going up or down.

Always remember that you're not alone in  your battle and that makes it worth it.

Not only the dialysis sucks, also the cost! lol
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