New here and looking forward to learning

[chiawana]

Good morning everyone. My name is Cheryl, I live in Boise, Idaho,  I'm 52, and my health is just fine. My husband, however, has been on dialysis since February and as his wife and "support person," I have an interest in this board.  He's been diabetic for over 25 years and we've known for awhile now that dialysis was imminent.  Last August we went to OHSU in Portland, Oregon for a transplant evaluation. After 3 days of tests, interviews, etc. we came home and waited to see if he'd be accepted. I'm happy to report that he was put on the transplant list in October 2011.  His nephrologist was frankly amazed that it happened so quickly, but my husband is the sort of person who, when his mind is made up about something, he goes full steam ahead. He has done everything they asked of him, tests and appointments, and is very proactive. So now it's just a matter of waiting for a donor match. We do have a few friends who are going to be tested to see if they might be matches, too.

On Christmas Eve my husband went to the ER with severe water in his lungs due to several factors, and spent 3 days there on diuretics.  This episode seemed to have speeded up the deterioration in his kidney function, and he had to start dialysis rather abruptly after some less-than-optimum blood tests in February. He had a difficult time with it emotionally at first. I'm sure you can all relate to that. He basically felt his life was over, he was going to be attached to a machine 3 days a week and virtually be unable to do any extensive traveling.  He was quite depressed for the first couple of weeks. However, once he realized how much better he felt and how much more energy he had, he decided it wasn't such a bad thing after all. In fact, he's accepted that the trade-off for feeling so much better is having to do this three days a week. On top of that, he's going in at 6:00AM (he is NOT a morning person), because he wants to get it over with so he can have the rest of his day free. Despite hating early mornings, he now willingly gets up at 5:30, gathers up his bag with blanket, pillow, Samsung tablet (fully charged, of course), phone, ear buds, and a notebook - and heads pretty cheerfully out the door. I only drove him there the first day and I haven't been with him since. He does it all himself. 

My husband has so many things he loves to do, and so many things he's committed to. He works two days a week, and goes 30 miles away two days a week to help with a food outreach program with a pastor friend of ours, even though we are not Christian. We are Pagans, and my husband is very knowledgeable and practiced. He has taken on a "student," and is working with her on reading lists and writing assignments.  He loves guns and stamp collecting and goes to the auction every Saturday because he loves to buy and sell things, but mostly to see people and talk. He's very sociable and sometimes you can't get him to shut up. He's had so much more energy since he started dialysis and he recognizes that fact. Even though he hates the fact that he has to do it, he is glad that it's there for him.

We are looking into doing home dialysis because we've heard that it's actually better for his health, and would be more convenient for us. I hope to learn more about that here. He currently has a fistula in his left arm, but he has had some issues with hand numbness, which is another reason we are looking into home dialysis. But I will seek out advice on that on other threads.

Looking forward to meeting people and learning a lot here.

[Traveller1947]

Welcome, chiawana!  Just reading your post made me feel more energetic!  Your husband's (and your) positive attitude is going to serve you both well in the days to come.  There are many people here who do home dialysis and will be glad to give you information and support on that.  I myself do hemodialysis in-center for four hours three times a week, but your hubby's got that down pat, I think.  I bring exactly what he does times two, i.e., TWO  blankets, TWO pillows, TWO tablets, etc.  I need to be comfortable AND busy, if I'm going to spend so much time tied to a chair!  All the best to you both.

[YLGuy]

  Welcome! Glad you found IHD.  You said your husband collects stamps.  I was wondering if he had me.  I am on Catalog # 1343: a United States postage stamp issued May of 1968.  It was a First Class stamp for 6 cents.  My father, a police officer and myself modeled for the stamp. 

[chiawana]

Thanks for the welcome, Traveler and YLGuy! We do our best to stay positive but we still have rough times. He was feeling kind of low yesterday but today he woke up perky, went to the auction, came home awhile ago and helped me get the lawnmower going for the first time this year. YL, I'll have to ask him about the stamp! That is so cool. He's mainly collecting German stamps because he lived there for about 3 years back in the '80s, and he loved it (and he's also of German ancestry). But he's got lots of stamps.

Have a great weekend!

[willowtreewren]

Welcome, welcome!

I love your attitude.

  to IHD!

Aleta

[boswife]

Welcome and i love your pic... well sort of anyway ..hehe, im so afraid of heights that it gives me a deep breath to look at, but im a goat lover and a beautiful picture lover that well,,,,, i love your pic   Dialysis is a toughy either which way ya look at it but theres different ways that are better for different people.  We're nxStagers and happy to be so, but,,,,,,,,,  I tensie weeinsie miss my days when i would go to center w/ hubby, snuggle him in and then head to the dog park, or the gym and swim with my daughter while he was being cared for at the center.. (we were lucky with our center) and, only 3 days a week.  Home D is wonderful, and outways the 'time' involvement in so many ways, but it is a huge undertaking until it just becomes a part of 'what you do'..  What ever ya do, im glad you have good love between ya that will help ya 'both' get through it.   

[cassandra]

wellcome to this site, glad you've found us

[MooseMom]

Welcome!

Yes, please do read the forums about home dialysis, particularly NxStage and nocturnal dialysis.  If he can do his dialysis at night over the course of 8 hours or so, he will get the best dialysis possible AND will be in the comfort of his own home AND will still have his days to do with as he pleases.  It sounds like your husband has few if any co-morbidities and may be a perfect candidate for home hemo.

Many people on home hemo take care of the own needs with little if any help from a caregiver.  It sounds like your husband might be one of those people.  The more he can do himself, the happier everyone will be, especially since he will be feeling better after getting the best possible dialysis.

[chiawana]

Thanks MooseMom, that sounds great. I do think he could do it on his own without my help, though I would want to be trained, too.  Even though I'm a pharmacy technician he takes care of all his own meds and all I do is get them refilled for him. I think the fact that he does all that, knows what he's taking and why, and manages himself so well was one of the reasons he was accepted so quickly for the transplant list.  I definitely want to learn more about the home dialysis options for us.

[Chris]

Hello
Is your husband a candidate for a dual transplant (kidney and pancreas if type 1 diabetic)?

[chiawana]

Hello
Is your husband a candidate for a dual transplant (kidney and pancreas if type 1 diabetic)?

They thought he might be, but determined that he's not a "true" type 1 even though that's what he's been told for over 25 years. Apparently he's extremely insulin resistant; his pancreas is still producing some insulin. We were disappointed, but the kidney is the main thing 

[Chris]

Odd way of telling you two, but back when I was diagnosed in the 70's, you were or you weren't a type 1 or type 2. Hope when he does get a kidney that he will feel better.

[chiawana]

Odd way of telling you two, but back when I was diagnosed in the 70's, you were or you weren't a type 1 or type 2. Hope when he does get a kidney that he will feel better.

Yeah, a lot of things have changed, haven't they? He actually feels pretty good on dialysis, other than actually having to go do it! He has more energy and has been really ornery 

[Poppylicious]

  Cheryl!

[lmunchkin]

Welcome Cheryl and glad you found us!  I am spouse to one who does D. also.   Anything you want to know, ask, someone will have your answer.

Again Welcome & God Bless,
lmunchkin
 

[conchman]

Welcome Cheryl.  Glad you joined... "excellent caregiver award goes to...".  I sometimes wish my wife would want to learn more (proactively), as she kinda' has her head in the sand at this stage.  One day were are gonna hit a wall and bam', it will be time to learn...oh well...

Again, Welcome...