Thursday, September 18, 2008

I forgot to mention yesterday that I've been running fevers, mostly in the evenings and never over 101 degrees fahrenheit. My pulse has also been giving the team issues. It fluctuates between 110-135 beats per minute. My blood pressure is also elevated to the point that I've been placed on medication to regulate it. Now, keeping in mind that I'm constantly being fed a narcotic, I think that's all that I've forgotten to mention. If I remember something else, I'll be sure to confess to it.

Because of my febrile state, blood cultures have been drawn daily at all hours and I've given multiple urine samples. The urine samples have all come back clean, but yesterday's blood draw showed an infection of some sort. The jury is still out on which particular bacteria is causing it, but the doctors should know something by tomorrow. Unfortunately, I started getting that all too familiar feeling that comes with the onset of a urinary tract infection this morning. I let the team know about it and they dutifully ordered another urine sample. Sadly, I couldn't produce enough of a specimen the first time and had to be asked for yet another later in the day.

I think we'll be able to confirm a UTI tomorrow, but if it looks like a duck and quacks like a duck, then it's probably a duck. Considering that I don't have an effective immune system, I probably look like the buffet on a high end cruise to any and all viruses and bacterias. Yum-yum.

The sores in my mouth have grown and the blisters on the roof of my mouth have started to erupt. The PCA really helps to keep everything under control, but I still haven't been able to eat anything. I got courageous this morning and attempted to drink some cranberry/grape juice. The first sip sent me into a spasm that almost made me cry. Knowing that so many other people have survived this gracefully makes me feel like a whiner, so that's the last that I'll say about the stinky mouth sores.

An occupational therapist popped in for a visit today and based on prior experiences, I only expected the visit to last 15 minutes at the most. I was so very wrong. He insisted that we do 10 reps of 13 exercises. Previous OT's put me through my paces to judge my ability and asked me the usual questions to ascertain what level of self care that I was capable of. This guy didn't really do that. I could tell that he was nervous and I'm sure that was part of the problem.

Based on my ability to complete the assigned exercises, he determined that I should see an OT 3 times a week. When I questioned him about why he felt I needed that level of attention, he didn't have a ready answer. I ticked off the list of things that I was able to do on my own on a daily basis, which included everything. I don't use assisted devices. I can bathe myself. I can feed myself. I'm able to communicate my needs with relative ease. The bottom line of my argument was that he'd be wasting my time. In typical "Ann" fashion I told him as much and he retreated. Now I'll get the occasional visit to assure that I'm still doing well.

Physical therapy is going to be stopping in for an assessment Friday morning. I've worked with this physical therapist in the past and have no worries where she's concerned.

Yesterday was Chris's birthday and I'm really sad that he had to celebrate it as a guest of MDA. On the flip side, I'm so grateful that I got to spend another year with my sweet husband. When this is all over I'll have to think of something really special to do for him. I'm wide open for suggestions.


Keri Scott said...

Since this blog first began, I have checked on you everyday. But.. sorry to say, I think this maybe my first comment.
Just wanted to question and give a suggestion to your post today.
My question, have they tried lydocaine for your mouth sores? Known other WARRIORS of this dreaded monster and a good friend was able to use the lydocaine on a sterile long cotton swab to dab the sores to numb them?
My suggestion about what to do for Chris' birthday... A Healthy wife with a BIG RED RIBBON would be the best gift of a lifetime...
Thoughts and prayers are with you and Chris everyday as you guys continue the fight of your life to win back your clean bill of health!!

Susan C said...

Happy birthday, Chris. Next year, let's all celebrate in Pasadena!

Ann, love your spunk in talking with the OT. And, hey, if you want to talk about those horrible mouth sores, go right ahead!

PJ said...

Considering you're in pain and under attack from various and sundry microbes, you are a hoot! Your buffet comment was priceless, and I'm happy to see Typical Ann is there to keep things sensible.

I vote for high-end cruise to celebrate Chris's next birthday.

Tina said...

I talked to him and he didn't tell me it was his b-day...grrrr. I wish I had known.

Happy Birthday, Chris!

Nancy said...

Hey Ann & Chris. Happy Birthday again Chris. I agree with Susan, let celebrate next year in Pasadena!!! Ann, your writing is true to form. You are humorous and informative all at the same time. Keep it up. I hope your sores will heal. As I remember, COH gave me something to combat mouth sores that they called Radio Mix. It was awful but did numb the mouth and throat. If I remember correctly it was lidocaine, pepto-bismol and benedryl all mixed in the same bottle. Yummmm... That's what they brought into my room. They left it on my nightstand so I could take a spoonful anytime I wanted or needed to. For the most part, it just sat there, but for other patients it really helped! They also had me sucking on these lozenges called Troche or Clotrimazole 10 Mg. They put about 10 on my nightstand everyday. I was to suck on them every couple of hours... I did this religiously and never got the mouth sores. Hence, the Radio Mix stayed put. Okay, keep blogging you have many a visitor. Feel Better Soon! Love ya, nancy

Ronni Gordon said...

Hi Ann,
Mouth sores hurt! You are not whining to talk about them. I have a suggestion when it comes to drinking juice. Instead of having it straight, maybe you could do half juice, half water, or even more than half water until you start to get better. Then it wouldn't be so intense when you drink it. You could also put in lots of ice. Feel better soon!

Erica said...

hi Ann! Sounds like you're kicking butt post-transplant. I think the stuff they gave me for mouth sores was called MORPHINE because I was such a whiner. Don't even think you are close. Also, as Nancy might have been referring to, I had a mouth wash called Triple Mix and I rinsed my mouth many times a day with saline. I saw on Chris' twitter that your WBC count is up a bit- that's wonderful! You sound amazing- all the best to you! -Erica

Anonymous said...

The mouth sores sound excruciating. And vomiting with sores in your mouth--no way I could cope with that. I mean


Happy Birthday to Chris! As usual, I did not send a card so don't be waiting for one in the mail.

As far as a nice present...ditto on Keri's comment for a healthy wife. That would be the best gift of all. Second best gift for husbands is usually some sort of PG 13 outfit (St. Pauli Girl for instance). I am just saying.