Kids are convinced I'm dying.

Charris

Now an angel
Joined
Jan 1, 2014
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Location
Arizona
When I got sick last month my daughter moved back home. Like 2 weeks after that she asked me when was i going to tell them the truth about what's wrong with me? That was regarding the liver transplant.

Important to this story is my mother was end stage renal failure and pulmonary fibrosis and was told she may have 1 or 2 years to live. She never told us I found the paperwork the week she passed.

So when I was in the hospital my son called me crying asking what's really wrong with you? Do you have Alzhamiers or cancer? I told him neither I'm just malnourished. He was like well even Jacquala thinks your just not telling us the truth. He said Jacquala said one day you were sitting in the car crying and you don't remember things. You ask the same questions over and over because you don't remember. Which is true I did get a little or a lot foggy when I got sick both times.

So when Dr. K called my daughter after surgery she asked him what's really wrong and he told her due to Hippa he couldn't discuss my medical records with her. So when he came to see me I told him he could talk to them and tell them anything. So when I go for my surgical follow up they will go to talk to him.
 
You ask the same questions over and over because you don't remember. Which is true I did get a little or a lot foggy when I got sick both times.
Sounds like the foggy from PROTEIN malnutrition which you WERE dealing with.

One of my sisters was convinced my daddy had Alzheimer's. While he did have some dementia from being in his 80's, it was NOT Alzheimer's.
 
Well, none of us are going to make it out of here alive, but hopefully your journey on this lovely planet continues for many, many years to come! Sorry your kids are fearing for your life, that's got to be tough for them and delighted their concerns are misplaced. Hopefully a talk with Dr. K will give them comfort. In the meantime, groceries and additional hands on deck aren't such a bad thing.... :)
 
I say this with all love and concern: I have long thought that you are one hell of a lot sicker and in a great deal more danger than you comprehend. So I have lots of empathy for your children's terror.

I don't know what would help their fear or, for that matter, improve your odds. But I am deeply concerned and think of you far more often than my lack of posting shows <3.
 
@Elizabeth N. I am so happy to see you post. I've been thinking of you also but figured you probably are so busy with the move.
You know it's funny you say that because I kind of have thought that since this last hospitalization. With having to get 3 days worth of blood transfusions ,2 bags each day I've had 18 blood transfusions in a year and still only make it to 10. Not even to normal. The low blood pressure 53/38, my heart hate 125 at rest and 180 with getting out of bed, then what happened with my heart during the second surgery this time. I was do scared I they thought I had a stroke or heart attack and did 3 angiographs.
I'm starting to wonder if I have some underlying heath issue that hasn't been found because we just assume that everything is from the DS. I was also thinking could my problems be from the distal Rny? This time when I saw signs I knew what was going on so I tried to put thing in place early and got help before I reached the same point. Last year same exact days. I'm convinced that when I do die it will be of an issue of the stomach, intestines, colon, kidneys or liver. Basically internal issues some type of cancer.
 

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