Hepatic Encephalopathy

Hi Board,

Still here in Mount Sinai, waiting to get better.

My question is thus - I have some HE. Memory loss. Among other things, I find that I am very angry at my significant other because he is not here rubbing my feet and tucking the covers around me. I want him to be the go-to guy, but instead he doing things like working. More later I am falling asleep

Anyway, he has assured me repeatedly that he is in this love together with me for the rest of his life.

I also know that he could walk away from my life forever at any moment he chooses.

So now I am sick, day after day, stuck in NYC where it could take 30 minutes or two hours to get here. Basically, driving is a crapshoot and there is no good public transportation right nearby. The safe, hospital parking is $30/day, and the toll to get over the bridge to get here is $8 a day. Sure it is a million dollar view on a multi-thousand dollar a day room. A room that quickly becomes claustrophobic and stifling as the hours pass by.

Anyway, I am crabby as all hell. An I want him to drop everything but work at be with me all of the time, and he is not. He has a life, and laundry, and a cat, and he needs down time alone. But I feel mad that he is not meeting my exact wants at this time. He is not dedicating at least 90% of his free time to be with me. And I am actually mad about this, and part of me thinks it is selfish to be so greedy, part of me thinks that since my family is useless, he is all I have and he is not rising to the occasion, and part of me shakes in fear that he will break up with me after this episode because my being sick was just too much of a burden for him.

Yet another interruption.

So, to sum up, this is not a question about my love life. He and I are like two peas in a pod and we run our own mutual admiration society. We can talk out my fears of him leaving me, and tease apart where competency ends, and HE starts. And we can talk about his fears of helplessness in being able to make me all better. The whole darn thing is hard.

When I got the ER by myself, they were expecting me, and I had a 104+ temp, and so I was taken right in. I now know that they had a very reasonable reason for wanting to rule out spinal meningitis by doing a spinal tap . I refused the spinal tap - but looking back upon it, I see that my reasoning was all out of whack, due to the HE, or the fever, or whatever. IMO, I should have allowed the spinal tap.

My dear bf was not there yet, but had he been there, he either could have convinced me to have it done, or he could have told the MDs that I was too out of it to make the decision, at which point they would have just cajoled me into it, or hit me over the head with a rock to knock me out so I would lie still for the procedure. There was no cell service, but rather than asking for a land line to call him, I was in la la land thinking about how much I did not want a needle in my spine, whether I needed it or not.

So, they flooded me with seventeen types of IV antibiotics, one of which would kill anything in my spinal fluid.And I got better, and then they found that it was Strep B in my blood, so they treated me for that, and now I have an even more targeted anti biotic for whatever sub species of Strep B is in there.

Family, BF and I need to be clear on who can make decisions and at what point. And I need to sign a power of attorney for my by to be legally able to make medical decisions on my behalf.

Then I have to deal with my abandonment issues, but I will refrain from getting all Freudian here. My shrink is going to call soon and we will sort it out. : )

Questions, comments, suggestions welcome. After I eat this little ice cream cup and take a nap.

Post Edited (schimbare) : 9/13/2014 7:07:30 PM (GMT-6)

As I mentioned in my other thread, not one family member has been here in six days, and none are planning to visit tomorrow.

So, gee, you wonder why I have abandonment issues? Abandonment issues, among other things, is the fear that arises in an infant. when they lose a vital caregiver, or the primary caregivers are not stable in their parenting, leaving the infant to fear that they will die because their parents cannot be counted on to meet their emotional and physical needs.

Anyway, both of my parents are still alive and well and happily retired. They enjoy visiting two of their six grandchildren. The other four, not so much. Anyway, the point is that I am going to look on the bright side and be thankful that they are alive and happy.

Thanks, Carol,

Now that I am out of the hospital, I am preparing a support group for the next time an emergency occurs. I have to get official papers signed giving power of attorney and medical directives to the bf.

I already have a chicken and dog sitter for the animals who can take care of them on a moments notice. Ex husband is totally on board with taking care of the 15yo. Ex has really risen to the challenge of being a single parent when I am out of commission.

I now have two people lined up who can drive me into NYC at a moments notice, and even more who insist they can and will take me to appts locally or run errands, etc.

I also reconnected with an a friend who was able to be in the hospital when I had to have the endoscopy, and whose schedule allows her to be available during the day to go to any appts or test I might have to have in the city.

(I am about 50 miles from NYC, out on the beautiful north shore of long island.)

I still need to have a big talk with bf, so he knows how to handle things when and if I go in for transplant. And I want to have something written so that my parents are only allowed to visit if I invite them. They are just way too stressful for me.

On the bright side, I suppose it is good that I have had these trial runs of hospitalization, thereby forcing me to get the support network into place.

Oh and basically anything I need or want can be done by anyone in my church. Those Congregationalists are a good bunch.

As far as my 19yo, we will see how it goes. The goal is to keep him in school. That is best for him now. But we shall see how things evolve. Heck, I hope I don't go back to the hospital EVER!!
Susan