Lost in Space

I'll try to catch you up to where we are now....

The last thing I remember is screaming like a banshee in the emergency room on June 13th ---- the pain was so intense and no one would give me anything for relief. I didn't understand at the time but they were forcing me through withdrawal of the morphine and other narcotics that had accumulated in my body from my recent stay in ICU.

The next thing I remember is waking up at 7am in ICU on July 26th -- 6 weeks later--- 6 weeks lost to my memory. No matter how hard I try, I remember nothing of that time and I've been told that I really don't want to remember that time. I've heard people visited me- no recollection. During that time, I was in a coma fighting meningitis and a wide spread case of shingles. Joe tells me that, according to Dr. P.,  I had a 50-50 chance of survival, and a 10% chance of walking again. I had to relearn everything from eating to walking to writing. My PT and OT sessions consisted of strengthening, small muscle exercises, learning to walk, learning to eat. I'd had a feeding tube while in a coma and when I got an ice chip to melt in my mouth, it was pure heaven feeling the cool water drain into my stomach. I became an ice chip glutton. I couldn't feed myself, so Joe was busy giving me ice chips. When they let me have a spoonful of pudding, oh my....

After a few days of practice, they finally let me eat; but I had to prove to them that I could eat enough calories to sustain myself before they would remove the feeding tube. The kept track of everything I ate and after about a week of tracking, they were satisfied that i could eat enough calories on my own and the feeding tube came  out.

All through this time, I had flares of pain in my left leg. Excruciating pain that felt like fire on my whole leg -- this is from the shingles infection. My left leg remains the only location where the shingles is active. I would have these flares of fire up to 10 times a day. They quit completely about 5 days ago -- a signal that the shingles is healing.

My days today are pretty busy, this is what a typical day should look like:

8:30 Occupational  Therapy (OT)
9:30 Breakfast
10:30 - 12:00 Occasional exercises (3 sets)
12:00 Lunch
1:00 - 2:00 Physical Therapy (PT)
3:00 - 4:00 OT
4:00 - 6:00 Occasional Exercises (3 sets)

Walking remains a big difficulty. My left leg is still very weak and it buckles on occasion. I need to use a walker and someone closeby to catch me should my left leg give out. I must say the therapists here are great at pushing me farther than I think I can go. It's always let's do one more set, or walk one more segment. They are mean in a good way.

That is my typical day. I have no medical issues to speak of (still have some fluid to get off) and as soon as I can walk and go up 4 steps, I can go home. I don't anticipate any changes in the coming days.

And the best news of all: I'm active on the transplant list and in a very high position!

Same Stuff Different Day

The day living  in the hospital has become pretty predictable. I have OT twice a day, we work on anything from  fine motor skills to strengthening my very weak legs. It's strange to look at my legs and actually see the muscles that have atrophied over the weeks lying in ICU.

I have PT once a day. We typically work on walking; my longest distance so far was 180 ft. - that's with a walker, a wheelchair behind me and plenty of help. They don't take safety lightly here.

I still have pain in my left leg - several times a day it flares up into an agonizing pain: It feels like my leg is on fire. That's the shingles - I hope it's a sign that it is healing.

Looking a lot better than I did 3 weeks ago.

Onward and upward.

Sleeping Beauty

I apologize for not keeping you up to date. It was a scary trip for all of us, I think. I spent several weeks in ICU, sedated, and in a medically-induced coma, to allow my body to heal and recover from a whole body attack of Shingles.

I surprised Joe by being awake on Sunday Morning when he came to visit. All of ICU was tbrilled that I was finally awake!

I have  had to learn to eat, again; and, after a week of practicing am finally eating enough calories to have the feeding tube removed. Yay, for me! It doesn't take much to make us patients happy :-)

The next hurdle is learning to walk again. My legs are very weak with a lot of muscle wasting from the time ICU. My chief OT guy says I'm doing great and getting stronger every week.

My current condition: I have shingles in my whole left leg. It is, living up to is potential, very, very painful. I get flares of pain that last about 5 minutes in which I need focus and breathe through.It's probably scary for visitors to watch, but I usually try to warn them all about the flare-ups.

So, I continue to get stronger and when I'm strong enough, I'll be able to go home. No ETA on that yet. :-(