Pancreas-Kidney Transplant

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Permalink Reply by Pat Fuller on October 19, 2009 at 5:45pm

Keep asking until you get your answers. Call the doctor and ask for information from a nurse or social worker. You can find resources to help with bills. You can travel and get out of the house. And you deal with it one day at a time. I know it's a cliche, but, it is true. My husband is getting a kidney transplant next Monday. His daughter is donating. There is hope.

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Permalink Reply by Flo Berry on October 19, 2009 at 7:47pm

Kristi,
I am also a caregiver - my husband had a liver tp in 07. I certainly can relate to how you are feeling right now. My husband became ill rather quickly and we were certainly not prepared either financially nor mentally for what was to come. I was so worried and frightened for his health and then on top of it, I felt guilty because I wondered how we would pay bills and still have a life while he was sick and not working. I had just started working again after many years and certainly didn't have the income that would support us. And then had to give up the job because of his hospitalizations were out of town and I needed to care for him.

I created this group specifically for people like you. I had the same questions and fears. Hopefully others will share how they handled things and maybe some secrets on who to contact. We were fortunate and were able to get some financial assistance from family when needed. Joe was on disability from work which helped but when he got to the point that he just couldn't handle the job anymore, we had to go on Cobra and that is very expensive. That, added to other bills was quite overwhelming for us.

We were fortunate and Joe received his transplant rather quickly and the wait was short. I imagine your wait and having your routine change makes it pretty nerve-wracking. I agree with Pat - take one day at a time, things do fall into place. It's hard to imagine when you're sitting there watching things 'happen' before your eyes, but do try to get out - even if it's for short trips. See if you can find different things to do together to help pass the time. You didn't mention if you have any children in your home. Are there others there that can help with a diversion? Is your husband eligible for disability? You might also check with Social Security on SSDI.

I wish I had more answeres for you. I certainly can see myself in many if not all of the questions that you have. I can remember driving home from the hospital the first few times he was sick and just crying - wondering the same things you are. Then somehow I found some strength and then I guess the caregiver took over and I just learned to deal with things one day at a time. Oh yes - there were bad days and the feelings came back - I'd have ups and downs. I wish I would have had this group to have someplace to vent. So - hang in there - keep us posted and write when you can. We're here for you and will help you as best we can. Sometimes just having someone to vent to - or just tell all your problems to helps get it off your chest and you can go on a little longer.

Baby steps.

Flo

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Permalink Reply by Ramona on October 19, 2009 at 8:36pm

Kristi - Wow. You are overwhelmed. I am also a caregiver. My husband had his transplant 21 years ago & we were not together at the time. He has been re-listed (2 years ago) for liver / kidney transplant, but his health has actually improved since he stopped working so he's on "hold" or being skipped over for now...but still listed. He is getting disability which is how we are able to pay the bills.

Like Flo and Pat said - ask everyone involved in your case, browse this site - there are fundraising suggestions here, there are financial assistance people at the hospital.

Get as much help as you can - and don't forget to take care of yourself too! One day at a time, stay in the moment & try not to worry too much about the future. We are all hoping for a short list time for your husband....and a speedy recovery (for you both!).

Hang in there.

Ramona

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Permalink Reply by Kristi on October 23, 2009 at 8:16am

Thanks for your responses! I think that "one day at a time" motto really rings true here and in our situations. Every time I think of the future I get major anxiety. So presto...no more thinking of the future. Just of today. It's not like I can really control any of this anyway, right?? :P

Branden has been in the hospital this week...the ICU, but now he's back in the regular hospital. He had to get the neck dialysis though. He had gone into DKA from the diabetes...seized, etc. It's been a great ride, let me tell ya. But I'm thinking now that he's getting the dialysis, things might be a bit easier. Right? Right? Please someone tell me it gets easier after you're on dialysis.

Hope everyone is doing well. One day they're going to have Caretaker Awards for people like us. Like the Oscars. I mean our jobs have to be harder than that....

Kristi
www.brandenstransplant.com

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