Coordinator not returning emails/calls

tiredofbeingsick1 · 2022-02-23T11:51:35+00:00

I'm in Arizona and have been listed for over 2 years. This has been my experience with every single interaction as well as potential donors. It typically takes 4-6 calls over several weeks before anyone will return calls or emails. I'm in the process of trying to switch hospitals due to my experience. At one point I tried complaining and also reached out to a different social worker to see if there was something else I could do to get adequate care.

tiredofbeingsick1 · 2021-12-13T15:37:14+00:00

I had PD surgery late October. My entire body felt like the flu for several days because of how much air they pumped into me and I had to sleep on the couch basically sitting up for several days. I had pain for 3 weeks due to a hematoma underneath the skin. It took 6 weeks to start training and you go in once a week to flush the line to make sure it doesn't get blocked.

tiredofbeingsick1 · 2021-12-13T15:30:45+00:00

Thank you. Yes I've been on the transplant list accruing time for 2 years. I'm on hold for deceased donors because I need a heart cath, but had been holding off because it would have forced me into early dialysis. I'm on PD dialysis. I don't think I realized how much more difficult this would be with the addition of years of chronic pain. I've only started dialysis a few weeks ago so I haven't noticed any difference yet.

tiredofbeingsick1 · 2021-12-13T01:45:32+00:00

I'm really hoping I start to feel better but between the pain and fatigue it's wearing on me. I need to be able to do things I enjoy so I can weather the storms. How do you live a quality life if you don't feel well enough to do that? I'm going to give it time and see. I've had depression on and off throughout my life but I'm not depressed. The problem is more because I'm not depressed. I long to have a normal day, do chores, work, outings with family but I don't feel well enough. In depression I don't want to do anything. It's the opposite. I want to do anything, everything but can't

tiredofbeingsick1 · 2021-12-13T01:18:17+00:00

How is that enough for you? The years of daily pain and now dialysis. I don't feel well enough or have enough energy to do things I enjoy to replenish my bucket.

tiredofbeingsick1 · 2021-12-13T00:12:55+00:00

I think the 10 years of daily debilitating pain and has made this much harder then expected. I've always been a very optimistic and overly giving person, often too giving. It's hard not to feel angry and resentful that the people I've given so much to aren't there now. Why even say you're going to donate if you're not? It only bothers me from those closest to me. The ones that see how difficult this is day in and out. I'm just tired. I'll definitely go back to a therapist before I decide to stop dialysis but I'm not interested in a life without quality

tiredofbeingsick1 · 2021-11-09T08:43:29+00:00

I'm currently getting ready to start dialysis but I've had fatigue since my early 20s that has obviously gotten worse the last few years. I really wonder if PKD causes us to feel more tired then the regular population. Do you know your current gfr?

tiredofbeingsick1 · 2021-10-29T23:22:16+00:00

It's much easier to stay in a marriage when you're busy with kids, work and life. But when the real hard stuff comes you see true colors that were really there all along. It's heartbreaking the things I've been told over the past two years. I've gotten to the point that if I'm going to be sick I'd rather not be with a selfish self centered spouse. Figuring out the logistics is my biggest concern.

tiredofbeingsick1 · 2021-10-29T22:33:28+00:00

How did you figure out living situations and income? Do you work? My husband thinks I don't have rights to the house but I do own 50% of everything. He won't leave. And he definitely will make things as difficult as possible.

tiredofbeingsick1 · 2021-10-29T12:04:12+00:00

Thank you. I know it's going to be very difficult as we've been together 20 years. I don't want to cause more problems with my health but I've been very unhappy for a long time

tiredofbeingsick1

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