I Hate Dialysis Message Board
Introduction => Introduce Yourself => Topic started by: winefred on December 17, 2011, 04:45:32 AM
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HI to all.
I am not on dialysis yet, but found some great information on this site. I had a kidney transplant in 1985 and haven't had any problems until the last year. My Doc says I need to go on the transplant list and I have had all the necessary tests but they won't put me on because I don't have a support person to help me. My husband passed 6 months ago from cancer, I take care of my mother who has parkinsons and dementia, and I work full time from home. I have no family or friends close to me so I don't know what I am going to do. This site has given me some great info on dialysis, since I am sure that is where I will wind up.
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Welcome, Winefred!
:welcomesign;
What a bummer about the support person.....any chance you could recruit a neighbor? You have much on your plate (and condolences on your husband).
:grouphug;
You are spot on about the amount of information here. I keep learning!
Aleta
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Welcome to this site, Winefred. So sorry for all that you have and are going through. And the loss of your spouse is just literally heart wrenching! Im so sorry!
If Dialysis is where you think you may be, look into home D. NxStage and PD are two very good modalities, and with you working at home and caring for your mother (God Bless You) sounds like that may be the ticket.
Dialysis is not perfect, but it can be done and done well. There are others who have been doing it for years and live very well, all things considering.
Let us know how you are doing and if we can help in any way, we will!
Again Welcome,
lmunchkin
:kickstart;
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Hello and welcome to IHD. I was in the same situation. I had friends but they worked and all my family lived in another state so the Transplant committee didn't think I had enough support.
Get to know your neighbors....
Hang in there.
Rerun, Moderator :welcomesign;
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:welcomesign; To the site Winefred
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Welcome, Winefred! I'm so sorry to hear about your husband. You've been through a lot, with no one nearby to help you. Now that you've found this site, you'll have the support of all of us here. You won't have to feel alone. All the best to you on your journey.
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:welcomesign; winefred!
Condolences and hugs to you! I have heard of people who don't have a support person available turn to charity groups, especially churches, for support and to advocate for them to the transplant team. Are you a member of any type of social group? I absolutely detest asking for this kind of help, but my husband and I found people willing to help us look after our young children by telling people a bit about our situation. Yes, I generally prefer to keep that private, but only good things came to me once I opened up to a few people in my social circle. I did not have to ask, in fact, help was offered.
Aside from that, if you have the financial resources, you could hire help for the post-transplant time. It is generally not a long recovery. What state/country do you live in? Perhaps IHD members in that area would have suggestions for resources if you want to start a new discussion under the transplant section about how to overcome this problem. Seems such a shame to be forced to stay on dialysis, especially since you clearly tolerate transplant quite well if your first lasted over 25 years. Good luck. We're with you through the struggle.
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Thanks for all your suggestions. That is my problem. I work from home and since I have been the caretaker for my mom, I haven't been able to meet people or join any social groups. I am thinking about moving closer to my relatives but the grief councelor says not to make any major decisions for at least a year! wow, I have so many major decisions to make, I don't know what to deal with first. I did have a successful transplant, my brother gave me his kidney and we were a perfect match. Reading all the stories about problems people have with rejection and meds, I am not sure I even want to go through that. I guess I am not ready to make a decision on that yet. I will keep reading posts and maybe I can get myself together to make some of these decisions, oh and did I mention I was diagnosed with Parkinson about 3 months ago! Yes, just another thing I have to deal with. Since my mom has parkinsons it hasn't been easy for me to deal with what is down the road for me on that issue.
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:welcomesign;