I Hate Dialysis Message Board
Dialysis Discussion => Dialysis: General Discussion => Topic started by: CHeatherS on May 06, 2011, 11:43:53 AM
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I have been around and around on the new Liberty cycler machine. I had to send the first one back and used the new one last night. So far my entire life seems to revolve around this PKD disease...... Someone new I met over the weekend asked me "what do you do"...... You know, I don't have an identity as others, as in, "I am a teacher, an artist, an accountant"..... I guess I just try to live and figure out what's the next step in the road. Anyway. I made it through the night last night with the new machine, have been 2 nights off of the sleep meds. Now, there is coming a possibility of the kidney donor being accepted by the transplant team. This means I have to yet figure out how (and mostly WHEN) to get to Seattle, find a place to stay for 1-2 months with someone to watch over me in that time..... while my husband struggles with job issues here at home.... and watches over the house. And there are so many more things I could add to this. It's not an easy thing to do... and I need some clarity, wisdom, guidance, for all of these issues. I also need some courage, as I have been through so much, I am tired, and just plain worn out. Another change and another surgery right now doesn't really sound all that wonderful. I would just like to take a walk on a mountain trail.... slowly.
Have any of you had to travel out of state to your kidney center? How did it go for you. Alaska is a long way from Seattle..... but they require that you have someone there with you. I would love to hear your stories.....
Thanks so much
Heather in Alaska
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I was just walking on a mountain trail today, it was nice out.. about 70. Anyways, When I had my first transplant, the center had an agreement with a Hampton Inn and we basically lived there for a month. they even provided a dinner, well for me at least, as the patient. It was nice because it was only 10 minutes from the beach, so we spent alot of time walking the beach. I dont know what to tell you about a caregiver, check that link to visitingangels I guess. good luck, Godspeed.
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Thanks so much you two, I really appreciate hearing your experience, as you have been that road ahead of me. I will call the social worker at Swedish this week and ask her a lot of questions..... I actually have two brothers who live in the area down there, but they have been estranged from each other for some time, and even though the wife of one of them offered for me to stay with them, I cannot get a response from them any longer, so don't know if I am still welcome or not.... Family, it's a touchy issue, huh?
Meanwhile I am walking in the forest, after a long, cold, dark winter in Alaska..... and I feel that I am coming alive and gaining some health back, which is important BEFORE any transplant. I had really gotten weak and toxic, so now I am on the night cycler, and have some time in the day to do a few other things besides all of those manual exchanges. Blessings to you!
Heather
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Heather,
I did not have to travel for my transplant..so I can offer no advice on that front. I just wanted to tell you that even right after my transplant surgery I felt better than I had in ages... it is worth the struggle!! Good luck!!
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Heather,
The best place to stay is The Baroness Hotel, 2 o3 blocks from SMC. The social worker said there are cheaper options available, but not as convenient as The Baroness Hotel. You need someone to stay with you to take care of you as well as someone else to take care of the donor, for at least for a few days.