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Author Topic: Worried about next week.  (Read 8742 times)
cherpep
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« Reply #25 on: April 14, 2009, 08:23:23 AM »

willowtreewren,

Your situation sounds a lot like mine with my husband.  We both work full time (we also work together) and do NxStage at home.  I am the patient, he is my caregiver.  We are a fantastic team - both professionally and personally.  Like petey, we view my kidney disease as one of life's challenges that we work through together.  Along with the household chores, we share the treatment duties.  When it becomes necessary for me to be in the hospital, he gets very nervous because he truly believes no one can take better care of me than him.  I believe that to be true also.  However, I do cannulate myself.  Because we both still work full time, and have individual responsibilities, we thought this was one facet of the treatment I would need to do myself.  This has allowed us the flexibility in treatments where my sister or son can be with me when it is necessary for him to travel, and he can leave without worrying too much.  I also do not have to take time off work to schedule in-center time when he is out of town.  This works very well for us, and has given him a touch of freedom.  It also helps him to not worry so much about the 'what-if's', because I am not entirely dependent on him.   Although, I must admit that I hate it when he leaves.  We just have a routine and cohesiveness that makes everything work better. 

Good luck!  I hope everything works out for you.  We are very blessed to have such wonderful partners. 
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willieandwinnie
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« Reply #26 on: April 14, 2009, 08:26:41 AM »

I have to jump in here. There were a few occasions when Len was doing home hemo and I still had my business. I had some meetings that I just couldn't miss and I talked to the home hemo nurse and see gave me the names a a few of the techs that lived pretty close to us and I talked to the couple that I like and asked is they would be willing to come do Len's treatments in our home. One flat out said NO (well excuse me) 2 said they would be happy to. Len was a pretty stable patient and I always set the machine up, they did his needles and monitored his treatment and took him off. We did this a few times. The techs don't make much money and they actually said they would rather do Len's treatments all the time. It cost me $40 a day when they did it and I didn't think that was much at all. We worked it so the tech came in the morning to do Len's treatment and then they went to the clinic for the afternoon. Len did have to go back to the clinic for a week when I was in the hospital and he said it made him appreciate home even more. I hope you  can come up with something so your husband can do his treatments at home.  :cuddle;
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"I know there's nothing to it, but I want to know what it is there's nothing to"
cherpep
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« Reply #27 on: April 14, 2009, 08:27:40 AM »

I also wanted to ask you about the camping.  How do you handle all the fluid from the treatment?  Do you empty your camper's tank each day? 
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paris
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« Reply #28 on: April 14, 2009, 08:43:27 AM »

Monrein made a wonderful point.  Thankfully, all relationships are different.  You don't know someone since you were 17, celebrate 41 years of marriage, raise 4 children and not know each other like the back of your own hand.  We finish each other sentences, think the same thoughts and practically breath for each other.  But, he still hates blood and pain!!  I fully accept this.  I don't like watching old war movies   :rofl;    You find what works for you.  I don't want anyone else relationship---I have worked too hard and long on the one I have, and I like it!   I think Willow and her husband will find a good solution.  I probably would want to beable to do my own needles---but I like being in control of what is happening to me.   

Keep us updated on how things go while you are gone, Willowtreewren (love you name so much)   :cuddle;
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It's not what you gather, but what you scatter that tells what kind of life you have lived.
Wenchie58
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« Reply #29 on: April 14, 2009, 04:29:52 PM »


   there is much that my husband would do and has done for me and vice versa but I like doing my own needles (and bathing myself too although I'll accept assistance in this area sometimes when I'm feeling particularly friendly). 

Give that girl a new kidney and she gets all kindsa frisky!!!!
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Live your life in such a way that when your feet hit the floor in the morning Satan shudders and says "Oh s**t, she's awake!"

Right nephrectomy 1963
Diagnosed ESRD 2007
"Listed" summer 2007
Transplant 3/6 match  10/24/08
paris
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« Reply #30 on: April 14, 2009, 05:11:46 PM »

Monrein is going to have the IHD men lined up with sponges and soap!   
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It's not what you gather, but what you scatter that tells what kind of life you have lived.
monrein
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« Reply #31 on: April 15, 2009, 06:42:08 AM »

Hmm...to be clean or dirty...that is the question.  Alternating states perhaps.  I'm saying nothing, nada, niente, rien.  I've apparently said too much already.  :rofl;
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Pyelonephritis (began at 8 mos old)
Home haemo 1980-1985 (self-cannulated with 15 gauge sharps)
Cadaveric transplant 1985
New upper-arm fistula April 2008
Uldall-Cook catheter inserted May 2008
Haemo-dialysis, self care unit June 2008
(2 1/2 hours X 5 weekly)
Self-cannulated, 15 gauge blunts, buttonholes.
Living donor transplant (sister-in law Kathy) Feb. 2009
First failed kidney transplant removed Apr.  2009
Second trx doing great so far...all lab values in normal ranges
willowtreewren
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My two beautifull granddaughters

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« Reply #32 on: April 17, 2009, 05:26:45 PM »

Gosh! So much to share, folks!

Cherpep, camping: We have an extra thunder tank that we run the drain line into. Then we only have to empty that each day.

I am back from my trip and we both feel better. Yes, they were less careful than I am doing the cannulation in center, but nothing untoward happened beyond needing to flip a needle (something I've never had to do!). One of the nurses there has a really great sense of humor so she and my punster husband had a good time lobbing jokes back and forth. When the neph breezed through one day and asked why Carl was there, the nurse told him that Carl's wife had "left" him! But Carl got the last word by telling her he was taking the "next stage" out of town as he left yesterday!

Carl tells me that he actually did not feel all that nervous about taking the cycler in and having the home training nurses take care of him. I guess it is more of my problem.  I will just have to recognize that if I'm going to travel, I will just have to accept that the nurses will be sticking him.

Our partnership is very much like Petey's and Marvin's. In fact, reading through her description of what parts of the process each of them do, I was struck by how similar it is to ours. One difference is that I take out the trash bag while Carl holds the "cotton balls" waiting for them to clot. We often have to get back to work after dialysis and we have worked out a really efficient process. It works for us!  :thumbup;

You all have been wonderful. I have a ton of catching up to do! I had NO internet service while I was gone and the e-mails REALLY piled up!

Thanks.
Aleta
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Wife to Carl, who has PKD.
Mother to Meagan, who has PKD.
Partner for NxStage HD August 2008 - February 2011.
Carl transplanted with cadaveric kidney, February 3, 2011. :)
cherpep
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« Reply #33 on: April 17, 2009, 05:50:46 PM »

I am so glad everything went so well.  Your husband is very lucky to have you, as I'm sure you are him. 
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petey
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« Reply #34 on: April 19, 2009, 12:22:33 PM »

willowtreewren,
So glad it all worked out and also glad you're back home to take care of Carl.  I think if Marvin and I ever have to have someone else cannulate him, it will be much harder/more difficult on me than it would be on him.  I'm extremely overprotective of him -- could you tell?

But, I'm happy it worked out okay for you, and now you can have some "peace" knowing that if you ever need to go out of town again, Carl is okay with your back-up plan and his treatments will go on with no major complications.  It's always good to have a "Plan B."
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