a-------ER Visits and Fluids--long as usual--LOL

[Guest guest]

a said:

" I have been to the ER at least 6 or 7 times since

I was released from the hospital on May 4. Maybe it has been more

often.

I lost track! :-) I get to the point where I am very dizzy and to the

point of passing out before I go. The fluids help me stabilize. There

had been the talk of a central line or g-tube. Right now, that has all

been stopped because my lab work looks fine and I don't look

dehydrated.

Supposedly there is no medical reasoning that the fluids should help

me

feel better. Well, sometimes our bodies just don't listen to medical

reasoning. At least that is what I have found. "

a,

I am so sorry to hear that you are still not feeling all that well

As you know I had an infuse-a-port placed this past Fall for the same

reason. I was constantly dehydrating and landing in this hosp

several times a month. I would sometimes go the ER and be home

several hrs later after several bags of D10 and Potassium, and other

times what my Doc said would be an " overnight " stay turned into

several days.

Getting the infuse-a-port was one of the best things I ever did !!! I

was SO SICK of being stuck and having IVs collapse after being placed

just a hr before :-( Yes, I have to have the port flushed monthly to

prevent a clot, but it is SO WORTH it. Now when I need Fluds for

cyclic vomiting or whatever is making me dehydrated, the Doc calls my

Case Manager at BC/BS and she and the Doc coordinate Home Health Care

Nursing to administer the fluids. Honestly,I can hook it all up and

begin the infusion all by myself as well as flush my port. ( I had to

do that once because an ER Nurse didn't use enough Heprin and I was

afraid it would clot off--- not something I want to do ona reg. basis

but I know I can if I need to.)

If you have any questions about it email or call me.

As for the flucutations in your lab results-I wish these Docs would

realize that Mito Patients' labs vary SO MUCH from one check to the

next that comparing to the " norm " doesn't help us out.Our OWN labs

values change so dramitically depending on the " whole picture " that

sometimes I feel they are useless in truly evaluating the overall

health and staus of a Mito Patient. 's Lactic Acid level

varies from " nomral " to 5.0. Sometimes the level reflects his oveall

health and is elevated when we would expect it to be and other times

when we expect it to elevated because he is SO SICK it is " normal.

I guess what I am trying to say aside from all the rambling, lol, is

that YOU know how YOU feeland YOU know what your body is telling you

to do or not to do. You have done an awesome job of this before so I

am sure that you will continue to do so.

If you need anything please let me know.

Smiles,Hugs and Love,