Nancy's Update

I was discharged from the hospital yesterday afternoon. I'm sorry I didn't update my blog. I was still feeling really bad yesterday and was out of energy. It was hard to even sit up.

When I first got to the hospital, they set up an IV and immediately hydrated me and gave me antibiotics. First came the yummy bag of levaquin followed by another tasty bag of bactrim. Well, the bactrim made me totally nauseous and I couldn't stop... well, you know. So, in addition to feeling like crap, I was nauseated and had to have a pan nearby. So, to fight the nausea they gave me another drug which caused me to have horrible migraine headaches. When I have migraines, it makes me nauseous..... vicious cycle....

They sent me home with 200 bactrim pills. Although, I can take them they still turn my stomach. So I turned to good old chocolate milk to wash them down. No nausea.... other side effect.... TMI...

I'm feeling much better today. I slept six hours straight last night for the first time in about a week. During the hospital stay, nurses were going in and out of my room all night, sticking me for blood samples, checking for allergic reactions, changing the beeping IV's, etc... They had to relocate my IV line four different times because my veins are so poor. I don't know how I stayed in the hospital so long two years ago. Like I had a choice... I guess you just gotta do what ya gotta do and take one day at a time. It was worth it but, I don't have much patience for inpatient care anymore.

I'll have to go into the clinic each week to check my lungs. I have a little more lung capacity as they've sent me home with a spirometer. So, these medications, must be working. In the meantime, I'm suppose to rest up. So much for my summer plans : (

Thank you for checking in on me. Love you all, nancy

Well, Well, Not So Well. Last week I was not feeling that great. I thought it was because I was coming off of steroids. WRONG!! Saturday ( 8/9), I was running a temperature of 102 and was having difficulty breathing. So - I called the City of Hope and they wanted me to come in.

I know I did the right thing by visiting the ETC (Emergency Treatment Center) at CoH, but I didn't think I was sick enough to be admitted. WRONG!! Over the last two days, I've had a battery of tests including chest x-rays, blood cultures, ARG, ct scan, and bronchoscopy - plus more IVs. The preliminary findings indicate it looks "suspiciously" like PCP Pneumonia. So - until they know more, here I sit - AGAIN!

I just wanted to blog today to say that I finally got a chance to volunteer at an A3M marrow donor drive last Saturday and Sunday at the Southeast Japanese School & Community Center in Norwalk. I had the pleasure of meeting a fantastic young adult who has the same thing that I do (did) but she's only 26 years old. Krissy is hapa and is in search of donor. She was out there rallying for new potential donors with many of her friends and family members. She is also lucky to be supported by so many friends and family, in fact, we were able to recruit a total of 190 new potential donors!! It was an awesome drive and it felt good to be part of it! Here is a picture of Krissy and I (taken on my blackberry, so sorry for the poor quality shot!)

In other news: I had a flare-up of some gvhd or something that is causing joint pain. So, my doctor put me on a fairly high dose (50mg/day) of steroids (prednisone) over a week ago. I'd forgotten why I didn't like prednisone... I'm so spacey (yes... even more so than normal - for those of you who don't miss an opportunity to bag on me.) and am eating everything in sight. My sleeping schedule is totally messed up and I'm anxious all the time. We're tapering the dosage off little by little and I can't wait to be off the stuff. But, it is helping and most of the symptoms have dissipated.

I need you all to send good and positive thoughts and prayers to so many needing transplants or facing complications.

-Krissy, as I mentioned above, is in need of a donor

-My friend, Ann Gregory, has relapsed and is in need of an adult donor.

-Another friend, Susan Carrier (also hapa) is having some complications following autologous transplant. The doctors at the City of Hope are trying to figure out what's ailing her. In the meantime, she's feeling pretty lousy.

You can click on the sidebar to view Ann or Susan's blogs.

Thank you for following my journey. I thank God for everyday of my life and for all of you.