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Author Topic: I am not only new to this board, but I am new to my husband's pending dialysis  (Read 2338 times)
BrenH
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« on: June 12, 2015, 09:02:39 PM »

Hello my name is Bren. About a month ago we found out my husband will need dialysis in about 6 months at the rate he is losing kidney functions. The doctor immediately added him to the transplant list as he only has one kidney anyway. We have been jumping through hoops ever since. His latest appointment was to tell us he needs a heart cath first, possibly a stent. If he has the stent done, he can't have a transplant for at least a year. I know that is a relatively short time for a transplant, but his sister is a willing and viable match...we just need them to be medically cleared.

I don't know which end is up anymore!!  I am beyond overwhelmed, and frustrated.  :stressed; to make things worse, I suffer from severe depression, and itis triggering that too.

I don't know much about anything. What they did talk to us about, I think we were both in shock and could not comprehend any of it. We have not started dialysis yet, we are still pre dialysis. I have so many questions and concerns...I just don't know where to start
I hope you all can help me through this
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galvo
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« Reply #1 on: June 13, 2015, 12:34:20 AM »

Bren, it's perfectly normal to feel bewildered at the beginning of the dialysis experience. Congratulations on joining us here at IHD. If there's a question that hasn't been asked and answered here, I'd be surprised. I suggest you delve into the site and be prepared for an absolute plethora of relevant information. We talk in plain language here, not in medical gobblegook. This includes info from our resident doctors, who are so helpful. Please ask any questions you have and you'll get knowledgeable replies. Let you frustrations loose here; we've all travelled the path. Vent to your heart's content; you're amongst friends
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Galvo
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« Reply #2 on: June 13, 2015, 07:59:22 AM »

Bren, welcome to IHD.  Your apprehension is entirely understandable and is very common.  Most of us, if not all of us, here at IHD have felt the same, whether dialysis looms ahead for a family member or for us ourselves.

Let's take this step by step, at your own pace.  Since it seems likely that your husband will start dialysis before he is transplanted, let's focus on dialysis.  There is a lot of information about dialysis online, so much so that it is overwhelming.  After literally years spent looking at all sorts of websites to learn about it, I found that Kidney School is far and away the best resource for patients and their families.  Here is a link to it:

http://kidneyschool.org/

Click onto "Modules", and it will take you chapter by chapter into the world of dialysis.  Remember that Kidney School is written for patients in mind, so the information is presented in a legible and accessible way.

So, start with Kidney School and go from there.

"Jumping Through Hoops" should be the title of any book written about getting on the transplant list because that's exactly what you do!  It can be frustrating, but the point of those hoops is to make sure that your husband will be fit enough for surgery.  If he needs a stent, then so be it.  It will make him healthier so that he can survive surgery and be well enough to enjoy his new kidney.

If you suffer from severe depression, I am assuming that you yourself have a medical team who looks after you.  Can you approach them with this latest set of challenges and ask for additional support?
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"Eggs are so inadequate, don't you think?  I mean, they ought to be able to become anything, but instead you always get a chicken.  Or a duck.  Or whatever they're programmed to be.  You never get anything interesting, like regret, or the middle of last week."
BrenH
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« Reply #3 on: June 13, 2015, 08:31:42 PM »

Thank you for responding...I will check out the site suggested
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frankswife
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« Reply #4 on: July 09, 2015, 12:39:04 PM »

Welcome Bren, I was in your shoes just a few years ago. Now I know more about dialysis than I ever cared to know, and yet I still have questions. This site is a great place to start. Any questions, ask away! :welcomesign;
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"If we all abandon our posts, who then will stand?" St. Augustine
LisaBart
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« Reply #5 on: July 11, 2015, 12:16:50 AM »

I was the same in August last year.....I had a husband in denial and fighting not to start dialysis but he did! Now next week the machine is coming home and Wednesday will be his first home dialysis...he is needling himself, with the odd hiccup...I didn't think I'd see the day he would be home to do it and never thought it would be this fast!  Other people learn, it's a matter of having to and it will all fall into place for you.
Don't forget to look after you though...take time out for yourself.
How lucky your husband is to have a sibling willing to donate a kidney!!!
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