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Bad to worse, just found out SO needs new kidney

I’m sorry he’s dying, Kenny. You are dealing with some super heavy shit once again in life and it sucks, and I wish I could help in some way.

I think your pragmatic nature will get you (and your so) through/over this, but FYI it’s ok to let go and grieve and be angry and cry. I know you know that. Sometimes we need to hear it from others instead of giving ourselves permission.

Take care. I hope you have a lot of great days left with your loved one. He is lucky to have you.
 
Continuing hugs - you are in my and lots of people's thoughts here. Do you have any spare rooms in your house that could be completely emptied out making it way easier to clean and keep clean that your SO could use as a treatment room? One of my husband's friends did this when his wife needed a sterile room when she was dying of cancer, rather than alter a room like her bedroom which contained all the things she loved in them, they set up a different room completely separate as a treatment room for her and while she was able she could go between that and her bedroom and other rooms in the house.
 
Kenny, I am so sorry you are going through this and I am sending you and your SO gentle hugs and good wishes. You and your SO are in our thoughts.
 
Who is taking care of you? :(2
 
I hope he gets some relief from the new at home dialysis. At least he will be in a comfortable place.
 
This is tough. He is so lucky to be able to stay in his home because of you. Sending strength.
 
I'm hoping this new dialysis works well for him and makes him more comfortable. I know this isnt easy on you. Take care
of yourself.
 
I'm so sorry about all the chaos and heartbreak. You probably are simply treading water right now, but there are support groups for care givers and that may be of use to you at some point.

Sending you both healing thoughts.
 
With the focus on the 'patient', its easy for the 'care giver' to get burnt out and wind up with their own health issues as a result.

Ask for help so that you don't get really run down.
The medical staff should be able to point you in the right direction.
A few hours of solitude can allow for a much-needed nap. With your SO not sleeping through the night, neither are you.
 
I am very sorry for what you are going through, kenny. I am not sure if I understand the situation correctly (or if it is stable enough to be understood). One poster wrote that she was sorry your SO was dying. Do you believe that that is actually the case? I ask because if it truly is, then it is time to call in Hospice care and he will no longer have to be in any pain at all. No more cramps. No more fear. No more anxiety about death. I have been through this with both my parents.

It is making the decision that your loved one is dying and that there is no more hope and that, therefore, you will do no more to try to keep him alive that is the huge hurdle.

On the other hand, if there is any possibility he can survive, of course Hospice may be a bad idea. Do his doctors feel he could live through a transplant...either now or if dialysis got him into somewhat better physical shape?

I know that these are hard questions, but I am sure that they are the ones you have been asking yourself and ones that that have probably been contributing to you loss of sleep. We are hear to listen to you.

All the best,
Deb
 
Kenny, this must be so overwhelming for you and your SO. My hope for you both is that this new procedure will help bring your SO much relief from the pain and discomfort he is experiencing. You are both so deserving of some positive changes!!
 
Kenny,
I am happy that your love is able to do dialysis at home and has the options of a donor. I hope that his condition is stabilized and a suitable donor is available for transplant soon.
I am a kidney transplant recipient. I was on hemodialysis for three years prior to receiving organs from a cadaver. The advice for compliance is absolutely correct. I would second that with record keeping,( daily weight, temperature and blood sugars four times per day in addition to recording any illnesses and a strong family support network. I had the opportunity to do PD but opted to do hemodialysis.
Please feel free to ask me any questions about my dialysis, diet and transplant experiences and I will answer them from the patient's viewpoint. I can also comment on eye surgery since I went through 11 prp in one eye, 13 in the other, 2 detached retina surgeries in each eye , 1 cataract surgery and the eventual removal of my right eye and replacement with a prosthetic eye.
Please take care of yourselves. You will both be in my thoughts.
 
Just a quick post.
SO's off to surgery but no, he's not dying; Well, not any more than anyone else with end stage kidney failure who's on dialysis.
I don't think I posted that he was, but I'm pretty spaced out these days. o_O

I'll answer more of your posts later or this weekend.
Thank you very much for all the kind wishes.
 
Sending good thoughts and hugs.
 
kenny said:
Just a quick post.
SO's off to surgery but no, he's not dying; Well, not any more than anyone else with end stage kidney failure who's on dialysis.
I don't think I posted that he was, but I'm pretty spaced out these days. o_O

I'll answer more of your posts later or this weekend.
Thank you very much for all the kind wishes.
Click to expand...

Good luck and keeping you and your SO in our thoughts Kenny. Bucketloads of good wishes continuing to be sent your way.(((Hugs)))
 
kenny said:
Just a quick post.
SO's off to surgery but no, he's not dying; Well, not any more than anyone else with end stage kidney failure who's on dialysis.
Click to expand...

That is good news. Hopeful news. Everyone is different, of course, but my cousin, who had a transplant said-if I heard correctly- that his creatinine had gone up to 12 before he got his transplant! He was very, very sick. The transplant brought him back to perfect health and he has been working in his (demanding) field as a researcher ever since his successful transplant.

I am thinking of you and your SO with great optimism.

Deb
 
Sending good thoughts that everything goes smoothly today kenny.
 
Sending you and your SO hugs, kenny.
 
Love and hugs to you and SO Kenny.
 
Thanks all.
Surgery went well, but he's still in outer space from the anesthesia.


BTW, I'm currently sporting TWO Octavia rings :dance: , his and mine ... in surgery one can't have valuables.

How many people are wearing a PAIR of Octavias?!?
You may bow and kiss my feet, if you wash up first! :lol:
 
kenny said:
Thanks all.

BTW, I'm currently sporting TWO Octavia rings, his and mine ... in surgery he can't have valuables.

How many people are wearing a PAIR of Octavias?!?
You may bow and kiss my feet, if you wash up first! :lol:
Click to expand...

Hahaha OK well I won't but kitty will.


kissfeet.gif

2 Octavias :love:
 
kenny said:
Thanks all.
Surgery went well, but he's still in outer space from the anesthesia.


BTW, I'm currently sporting TWO Octavia rings :dance: , his and mine ... in surgery one can't have valuables.

How many people are wearing a PAIR of Octavias?!?
You may bow and kiss my feet, if you wash up first! :lol:
Click to expand...


A Pair of Octavias! :dance: :dance: :dance:

Photos, Kenny, photos! :appl: :appl: :appl:
 
I'm so glad the surgery went well. One hurdle at a time.
 
I'm glad it went well too, hopefully you can make him comfortable until he can get a transplant.
 
Hope your SO is adjusting well to the PD. He will be much happier not to have a catheter in the jugular and so will you. If limiting fluid intake is a problem, I found that sucking on a frozen grape or flavored ice chips kept the thirst at bay. On hemodialysis, you are not allowed much potassium and even less foods containing phosphorous. Therefore, only a small serving of grapes per day. A food journal is a must to make it easier to follow the diet. We found the dialysis education center very helpful with providing lists of approved foods and snacks and recipes.
 
kenny said:
Thanks all.
Surgery went well, but he's still in outer space from the anesthesia.


BTW, I'm currently sporting TWO Octavia rings :dance: , his and mine ... in surgery one can't have valuables.

How many people are wearing a PAIR of Octavias?!?
You may bow and kiss my feet, if you wash up first! :lol:
Click to expand...

Glad to hear it went well!!

A pair of Octavias, you may just be the first one in history! Do we need to make some kind of time capsule to mark this day in history?? :Up_to_something:
 
So glad things went well in surgery, but so sorry you both are going through this. I hope things will improve for both of you and that you are able to take care of yourself too. Sometimes life is just a punch in the gut. Hugs to you Kenny.
 
kenny said:
Thanks all.
Surgery went well, but he's still in outer space from the anesthesia.


BTW, I'm currently sporting TWO Octavia rings :dance: , his and mine ... in surgery one can't have valuables.

How many people are wearing a PAIR of Octavias?!?
You may bow and kiss my feet, if you wash up first! :lol:
Click to expand...
Glad to hear the surgery went well!..:clap:. Kenny post a pic of your toe ring. Here's mine...:P2, not an Octavia but....toe 13128.jpg
 
Missed the update...so glad the surgery went well. Hoping things remain calm for a while for both you and him.
 
I'm waaaay behind in reading PS posts, kenny. So very sorry to now see this thread. But of course am happy for the two of you that the surgery went well & will be sending lots of positive, healing energy in your direction!

IIRC you live in California? If so, California has its own short-term Disability Insurance program for which he (and even you) might qualify; it seems that the state program is easier to navigate than the federal Social Security Disability program, has less demanding eligibility requirements, and apparently with waiting times that are less onerously long than the federal program. Here's some very basic info, but I trust that his medical team, hospital social workers, etc. can be of truly meaningful assistance about this:
http://www.edd.ca.gov/Disability/About_the_State_Disability_Insurance_(SDI)_Program.htm
https://ca.db101.org/ca/programs/income_support/sdi/program.htm

With the very warmest of best wishes ~ Molly
 
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