Sunday, July 24, 2011

Posting Decisions

Once again, I am up far too late. The reasons are many tonight. Most of which I will write about soon, but no panic is necessary. Confusion and mulling mostly. It is a fine and difficult line deciding whether one should write about other people. Will it mean something to them for posting about them? Or invade their privacy instead?

So while I sort out that conundrum, I also need to write again soon, rather than leaving things with that elephant. Thank you to those who reached out to me in concern, and sometimes in sadness. Life is difficult, but when the difficult is presented so bluntly, it seems helpful to quickly move on to a new topic which isn't so raw. Do you know what I mean?

Monday, July 11, 2011

My Medical Status- The Elephant in the Room

It's late, I am tired, and I need sleep to come. So while I wait for heavy eyes, I thought I would address the Elephant in the Room: what exactly is going on with my medical status at this point. And while I could go on and on with other details, which I may do another time. But the main and overriding issue remains my immune system. It still has not reconstituted properly. My T-cell count is very low. This translates to "not good".

Here is an analogy. It COMPARES my immune system to a person with AIDS. I DO NOT HAVE AIDS. This is just how my Infectious Disease doctor has explained it to me. (I see him because of multiple chronic problems, NOT AIDS, that I deal with.

A person is considered to be HIV positive until their T-cell count drops to 200. At that cut-off they are now considered to have AIDS (rather than being HIV+). It is at 200 or below that a person with AIDS starts to experience many opportunistic diseases, syndroms, and conditions. Hospitalizations become frequent for most patients as their immune system is so compromised that it can't fight any of the medical problems that person has.

When the T-cell count goes down to 100, at this point the person is considered end-stage. The body simply is overtaken by various ilnesses and diseases. It's time to make final preparations and Hospice is often called in. There is little hope other than a miracle.

My T-cell count is 39.

I am scared of even the common cold. I worry someone will walk past me who has chickenpox. I isolate so I am exposed to as few opportunistic problems as possible. I am not allowed in my children's school because of the many germs naturally found at primary school. Every hospital visit I worry if I picked something up while I was there.

It has been over two years of this and it gets very old. I live but watch everyone else around me as they are living. There is a big difference.

I recognize that all of this information may shock you. But it's the truth, it's the explanation many have wanted, and it's my reality.

Sunday, July 10, 2011

A Red Letter Day!

Okay, so the next sentence may not fit today's post title.

Yesterday I had surgery. Just outpatient but surgery nonetheless. No one gets really excited about surgery. But there I was, bouncing through the door and swaggering about. Why the strange behavior? I GOT MY FEEDING TUBE OUT!!!!

Yes, finally, I am now a one tube woman (PICC line). And a happy woman I am! A few things brought this about, both good and not so good. But it is out! The pictures here show what it looks like right after it was put in last February (What tube number was that?!) and the other shows what a PEG tube (feeding tube in the stomach) looks like. When I saw it, it looks so simple and non-threatening. Yet it amazes me at all it can do.

The good part is that my doctors actually let me get it out. I had gotten to the point (the not so good stuff coming up) that I had asked a few weeks ago about getting it out. The response was to wait a few more weeks, and if I maintained my weight gain AND if my lab values continued to improve that we could discuss it again.

To detail the good, 1. I have gained some weight and maintained it. AND 2. My lab values have been improving. I feel like I have fought for every ounce I have gained and it feels kind of weird on my body, but it's there. Tube feedings, either continuous or by bolus, started that out. Bolus feedings then became my preferred because it meant less time hooked up to a machine. I ended up with a disorder called "refeeding syndrome" where your body kind of freaks out from getting nutrition after starving for so long. That lead to weekly sessions with the Refeeding Specialist at the hospital. Through snacking and small meals, I worked up to the commitment of one meal a day, plus snacks. I also made a huge change in my life and gave up Diet Coke. Oh, we were such good friends..... Now it's no diet drinks but I do drink alot of 7-UP, approved by my Refeeding Specialist. This actually helps toward hydration while giving me calories. 7-UP is my bridge for what additional food calories I need until I get there.

The other good part is that while my Home Nurse is here twice a week, he draws labs. They detail an incredible amount of information, including nutritional status. There are actually labs that tell what level of starvation and nutritional depletion a person is in! So no matter what you might be tempted to report, they know the truth about what's going in. And those values have made an extremely slow, it seems, improvement.

Anyways, I had the evidence that I was working the program and doing better and when I finally asked out of desperation to get the tube out, I got a yes!!!!!!! And who wants a tube hanging out of their stomach anyways?

If you are happy enough with the above, you can skip the below. Why mess with a high point? But here are the reasons I wanted it out NOW.

I had been suffering from some significant pain because of the tube. I even went to the hospital for it. The theories are that 1. It takes up a lot of space inside a small stomach organ to begin with. Then you add the 50+ pills a day. Not so much room for food. 2. My stomach wasn't real fond of it and it spasmed a lot, which really hurt. 3. It was located near the bend in the intestine where it is common to have problems especially when you have motility problems as I do, for "things" to move further along. So it ended up being counterproductive to my eating needs because I knew the spasms and pain would only get worse. So last week after a couple of days in bed because of the pain, and not wanting to gasp or cry or otherwise show my pain to my children, it was just enough. I called, explained it was time, two doctors approved my request and the next day it was out. Hooray! Happy day!