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Dialysis: Transplant Discussion / Re: I don't even want it.
« Last post by KeenString on December 16, 2018, 10:30:55 PM »
Ok, so 'deserve' probably wasn't the right word. What I feel is 'bad,' because I know that I am a 'perfect candidate' for a tx, but I don't want one. Meanwhile there are other people who are willing to do anything, and want a tx so bad, but circumstances beyond their control make it impossible for them. And I know how awful it is to just want something, your own body, to WORK, and not be able to have that. That was me when I was a child and dx'd with t1d. It makes me feel guilty that I have this opportunity that other people want, but I don't. So in a way, I feel as though there are other people who deserve it more because they've wished for it more, prayed for it more, folded more paper cranes, sacrificed more virgins... you know, basically they just want it more. I feel that a kidney should go to someone who wants it.

UkranianTracksuit- Ugh, exactly! I have a TON of people come visit me when I was out of it, and THAT freaks me out, too! I work at the hospital I was in, I had a bunch of coworkers stop in. My roommate (good friend) came to see me every day. One day, when I was home again and we were chilling in the living room and talking about something to do with the hospital, she casually says, 'You kept kicking your legs around. I kept trying to cover you up, but a few seconds later you'd flail around again. I saw your vagina." (And then she just kind of grinned and laughed because under normal circumstances this would be hysterical for both of us, but I can't tell you how mortified I was, because I had no memory of ANYONE or ANYTHING.) People kept telling me things I did or things that were done to me when I was AMS that I have no memory of, and I finally had to tell them to stop because it was setting off panic attacks. I'm still real squeamish and I don't want to know anything new, but in hindsight, some of the stories and conversations that happened were pretty hilarious. I'm sorry you have had to go through the nightmare that is a coma, too. And I'm also glad you came out of it! It's good to hear that the tx surgery isn't as invasive. That is... really a huge fear of mine. Especially having to go into ICU afterward. I will say that, after I was AWAKE from the coma, I pretty much had no problem being there. I was in OBS and I knew most of the nurses on the floor. To tell you the truth, I would be like... 50% more comfortable with the surgery if I could get it done at my own hospital, just because of that. Ok, so as far as the pooping goes, pain killers never back me up, so I'm HOPING that if I go through with all of this, perhaps that will aid in me not having a problem with a collapsed bowel or anything. I... don't even know how that works. I haven't gotten to research that part of the pancreas transplant. One panic attack thing at a time. To be honest, I don't know what a kidney/pancreas tx scar even looks like. I google image searched it and came up with three different scars, all saying they were KP scars. Does yours go down the middle of your stomach and then curve around your belly button? Still worried about getting a weird belly. I can deal with it being a little deformed looking, I just don't want it to look like I'm 5 months preggo all the time.
Boy, I often feel the SAME WAY about my life. I feel like, well crap, this isn't at all how I wanted my life to be. I only had one shot at this, and I wanted to do so many things, but I couldn't, because I was sick. And I get F*ck*ing DOWN about that sometimes. Like my life has just been wasted. How many hours have been spent laying around in bed waiting to feel better? Or how many times have I not been able to do something, or had to cancel plans, or would rather do something 'low key' when I was mentally ready to do something def not low key, all because of my health? It kind of feels like... well, I have thirty years into this lifestyle, how can I just give up on it? What am I going to do when I have nothing to take care of anymore? It feels like I've done this for SO LONG that it's not fair that all the sudden, poof, now I don't have to. Very hard to explain that one. For a long tome, I was angry with my endo and any other doc that would try and tell me things about 'taking care of diabetes so blah blah doesn't happen,' and this was because of a lot of personal research I did. Doctors tell you that if you take very good care of your diabetes, you won't get x,y,and z complication. CKD, all forms of neuropathy, etc. The truth is, that all diabetics get these things. It happens to all of us. Don't tell me that I won't get retinopathy if I keep my HbA1c at 6 my whole life. I've read article after article about these problems affecting ALL diabetics. The only difference is, when. I just wish that, at some point when I was younger, one of my (many) doctors would have just told me this truth.
I've got another question for you- as opposed to the kidney part of the transplant, how did the pancreas tx change your life, other than not having to manage sugar levels? I mean... All right, so I get extremely nauseous really easy when I eat, because of my bloodsugars fluctuating. Not even large amounts. If my count goes from 100 to 185, I feel like shit. Or if it goes something as small as 100 to 150 very fast, it will also make me feel awful. So I don't know what it's like to eat a real carby or a larger meal without feeling awful afterward. I assume that'll change. What were some of the ways the new pancreas changed life for you that you didn't expect, because you were so used to it? Also, did you get a living kidney donor, and if so, how did that work to get a living donor for the kidney but the cadaver pancreas? (There, now I wrote you a book!)

Simon Dog, you bring up a very valid argument...

Cupcake: I should look into those! Though I will admit, a scar will be cool. I can tell stories about it, like 'they thought I was dead so they started an autopsy." or "desert storm." I didn't know that about toxemia, I'll keep that in mind if I get the tx and find a donor. Ireland sounds great! I bet that's going to be a blast! My dad and I decided we'd take a road trip we'd been planning after I heal from the surgery, if I get it. First stop would be his old band mates' place (they own a concert hall on their property) and then to a bunch of other places along the East coast to visit other spots he played, and people he played with when he traveled. I'll check for that book! Thanks for telling me about it!

Oh for Pete sake..

Reading some of theses comments really cause a person's eyes to roll. If you do not want to be on the list then don't bother. Don't get the damn kidney. There are thousands of people who do want the kidney. I will tell you something you go into a transplant center expressing some of the feelings posted here YOU WILL NOT BE PLACED ON THE LIST. Transplant centers do not want people with  that sense of attitude. Like I said before it is a privilege and you are expected to take very good care of this privilege. Don't be like yea I got one and I do not care about it anymore........ Kind of like being selfish.......


Hey, thanks for rolling your eyes at us.  That's the most helpful kind of attitude when dealing with a horrible illness that makes you feel alone and emotional. I am on no list, yet. My decision, in the end, will come down to logic, and UkranianTracksuit is right- just because I don't want a tx right now does not mean I will not take care of it later. And this is my life. Everyone, EVERYONE, has every right to feel how they feel, and more importantly, take the time they need to come to terms with how they feel. If that means flip flopping a million times before they decide to go for a transplant, then so be it. If you are not at peace with having a tx, even if the end result is something you want and you are just afraid to go through the journey to get there, then how DO you expect to be able to take care of the new kidney afterward? Anyway, thanks for the great advice, buddy.  :cheer:
2
Dialysis: Transplant Discussion / Re: Questions re Transplant
« Last post by cassandra on December 16, 2018, 10:29:21 PM »
Sorry to be late to this thread but congratulations to you and your son with the kidney


   :cheer:   :cheer:   :cheer:


Great to read the kidney is waking up.


Enjoy some extra drinks on me there  ;D


Love, luck and strength, Cas
3
Dialysis: Spouses and Caregivers / Re: Giveth And Taketh Away
« Last post by cassandra on December 16, 2018, 10:08:00 PM »
O PT  I'm very sorry to hear that. I believe in Charlie's When one door closes another door will open. Wishing you nothing less than better luck, and strength, and keep holding on to that 'it'.


Lots of love, Cas
4
I like that word "Decruited" sounds much better than being canned.... 8)
Actually, one gets phased to the mobility unit for the decruitment career phase.

Now, if I rejoin my former employer (they have shown some serious interest) will it mean that I have been rerecruited, and if they eventually can me, will I be redecruited?
5
Dialysis: Medicare/Insurance / Re: What options for those with no insurance
« Last post by Michael Murphy on December 16, 2018, 07:57:37 PM »
This is a problem the clinic (should be Social Worker, but in Fresinius for example each clinic has a insurance specialist assigned) should help you solve,  if you are not eligible for Medicaid then they will help you find and some cases I have seen arranged payments to cover the cost of the insurance to provide coverage.  There is see other options and the insurance specialist can help you find one.  Cobra, Medigap come to mind.  You need to get to a insurance mavin ASAP to resolve these issues.  I know that the period of time after being laid off is very stressful but this is something that when resolved will diminish a large part of the stress.  Getting this resolved quickly is critical right now Incase the current republican congress guts the preexisting condition provision of the Obama Care.
6
I like that word "Decruited" sounds much better than being canned.... 8)

7
Dialysis: Medicare/Insurance / Re: What options for those with no insurance
« Last post by Mr Ken on December 16, 2018, 07:24:46 PM »
Quote
Not for medicaid...... There is no min asset requirement for medicaid. Goes by income not what you have
I was not referring to a "minimum asset" requirement but a "maximum asset requirement".

I think I may have over-generalized.   I am certain that (at least in MA) there is a $2000 maximum asset requirement in order to have Medicaid pay for a nursing home.   This is why you hear the terms "Nursing home spend-down" and "lookback period".   Digging a bit deeper, it appears that this only applies to nursing home payment and not to general Medicaid health insurance which is income based.

So, if I let disability expire, do not get a job or pull a job, and do not cash in any IRA/401K/403B accounts, I could probably get my income down to near zero and qualify.

Thank you for clarifying that as the case
8
I was decruited while on the transplant list and the team never found out and would not have cared if they did.  It is only likely to affect your status if you become uninsured and thus fail the wallet biopsy.  Many transplant candidates are either retired, unemployed, or unable to work and on disability.
9
Dialysis: Spouses and Caregivers / Re: Giveth And Taketh Away
« Last post by Charlie B53 on December 16, 2018, 06:46:13 PM »

Have Faith, that when one door closes another better door opens.

I will keep you both in my Prayers.

From what I gather from your prior postings your Husband may be better off registering an LLC an Consult for his previous clients.

It may be worth looking into.   Insurance may cost.  Do your homework and get advise from a reputable CPA, possibly also an atty.
10
Introduce Yourself / Re: Well cot dangit,
« Last post by Charlie B53 on December 16, 2018, 06:41:28 PM »

Welcome to IHD!

If it weren't for sarcastic humor I may never have a chance to laugh.

You're with great company here.  Many of us have learned long ago to laugh in the face of adversity.  You should do well.
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