I Hate Dialysis Message Board
Introduction => Introduce Yourself => Topic started by: jlgriffin15 on August 29, 2018, 03:30:39 PM
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Hi! My husband of 3 years is an ESRD patient. He has Dense Deposit Disease which caused his kidneys to fail when he was 8. Unfortunately, his disease is recurring, so a transplant won't help :/ Keeping my fingers crossed that one of the artificial kidneys being developed will work for him eventually. For now, we're just riding the dialysis train :)
He did peritoneal for 7 years as a kid, then got a transplant from his grandma that only lasted 5 years and he's been on hemodialysis ever since (going on 14 years). I've been trying to convince him to try home hemo, but he likes having the clinic take care of everything for him. Maybe someday...
So yeah, that's us! He's not too involved in any ESRD or dialysis communities, but I like seeing what's going on in the dialysis world and finding others with his disease.
Thanks for adding me!
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You've come to the right place!! Thank you for joining us.
Overall, how is your husband's health? Is he doing pretty well on in-center dialysis? Just as importantly, how are YOU doing?
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:welcomesign;
Hello jlgriffin15, welcome to the site.
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Welcome to the site jlgriffin15
:welcomesign;
Take care, Cas
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Welcome to IHD!
I also did PD for my first 3 1/2 years until I screwed up and must have given myself an infection fromo hell that refused to die and soon caused me to lose my PD cath and switch to Hemo in Clinic.
I can perfectly understand what your Husband means by letting the Clinic handle everything.
PD at home required us to maintain a Log Book, at least twice a day recording our weight, BP, some also note temps, and anything they think may be out of their ordinary, some almost keep a Diary of how they feel. I can be a task, but perhaps it helps our PD Team learn something.
Once I switched to Hemo In-Clinic I haven't taken my own BP or even stepped on the scale at home.
I am very careful about what and how much I eat and drink so my labs stay very well within the guidelines recommended for us.
I hope your Husband does as well and you understand his dietary restrictions. I am sure that can sometimes be a PITA when it comes time to prepare meals. Cooking most of your life being used to making some of your favorite things then living with someone that shouldn't maybe eat some of those things.
I splurge sometimes. Not much, often not even a whole serving. But I can have a 'taste' and appreciate those things that I used to be able to have regularly.
Don't be in such a rush to do Hemo at home. You might ask his clinic if you can sit in during their training sessions so you can learn more about treatments. It take lots of training and massive confidence as anything can go wrong and it is up to you to handle it. He may decide someday, but until then it really is much easier to let the clinic take care of it.
We have a number of members that do Hemo at Home. I have massive respect for their confidence and abilities as being needle-phobic I cannot see myself doing that. Someday, maybe, but definately not today, or tomorrow!
Take Care,
Charlie B53
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Welcome to the group.
No one treatment style is best for anyone (or their family) so its very good we have a few choices to choose from. As a former in center dialysis patient I too found the center experience fairly easy.
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Be patient, he's feeding not to place the burden on you. It's a lot and we as patients feel like we are Inconveniencing our family. Some of this might cone from some of the childhood trauma. Someone in his past may have made feel more of a burden than a blessing.