I did go home on the 8th however during the night on the 9th things went to Hell in a Hand basket!!!
Friday, the 9th, was a great day if you weighed it against the fact that I just got discharged from the hospital. I took it easy and Amy came to visit after work. She took off early so that we could spend time together. She, Lee and I talked and had a nice time. She made our dinner around 7:30. We all ate and Amy headed home. All was well and we had a good time :-)
Around 9:00 p.m. I told Lee I needed to go to bed because I didn't feel good all of a sudden. That was the beginning. Within minutes I was completely congested and felt super weak and cruddy. Lee brought my Nebulizer machine to the bedroom because I was too weak to walk to it! From 9:00 p.m. until 7:00 a.m. Saturday, Lee set up breathing treatments for me with my nebulizer. He was also bringing me water and checking my temperature all night long. I just didn’t know what was wrong with me and I felt awful! At around 7:30 a.m. Lee took my temperature again…105.3° It was time to call the transplant coordinator on call. I was too sick so Lee placed the call and they directed us to the ER. I had been propped up on my wedge having very coherent conversations with imaginary videos. I would see a clip of a video - maybe it had Lee in it but maybe not! I had little shorts of everyone I knew and they were doing things and looking at me and I was talking with them. It took us around two hours to get me out of bed, dressed (in pajamas), and on the road to the hospital. I was just so weak and a little weird :-)
We made it to the hospital and I just must have looked waaaay worse than I knew! Right into the resuscitation room in their Trauma Center we went! Wow that’s a big room and it fits a lot of people (including my imaginary friends I brought from home)!!! No one at that time knew what was wrong with me – they just knew I was really sick. They were all sort of yelling at each other and asking me about drug allergies and it was weird. I was a little scared because I’d never reached this level of “sick” before and we were all in uncharted waters. I remember it also being a little annoying because I couldn't continue my own conversations - they kept interrupting to ask me if I knew. Oh heck some I did and some I didn't but I didn't really care because I was busy with my "friends". This was way more than a “flare up”! Simultaneously they were drawing blood, taking X-rays, asking Lee questions (still couldn’t talk), and prodding and poking.
X-rays came back (within a few minutes) showing pneumonia. I had left the hospital 36 hours earlier and felt fine and now I had pneumonia?! I was too sick to care! It was no big deal to me! I think it was to Lee though! He didn't have any other friends to talk to :-)
One of the doctors said they were going to start me on Zoysn and some other drug – neither of which I’d ever had. My fever was lower but still spiking to around 103° on occasion. My head was killing me and they offered me good drugs but my stupid allergies kept me just on Tylenol :-)
They were going to admit me but they wanted me on the 7800 floor so I had to stay in Trauma until they had a bed. That took several hours and lots of doctor drive-bys and an extra IV med treatment. Lee went home after ten hours so that he could take care of Missy. He knew I was in good hands so it was now time make sure our youngest baby was OK! I was finally put in a room up on 7800 and things just got muddier! Looking back on that afternoon/evening I can see a little clearer why the docs and nurses said I gave them a good scare!
I got settled in a bed and I think Dr. Zaas came by that evening. Either that or I was still hallucinating! They had me hooked up to IV meds and telemetry and sats and BP monitors etc. Did I mention that my blood pressure went down to 70 over 44 in the ER. That too got their attention. It was just my day for attention . I decided I’d go to sleep because all day I remember asking Lee a gazillion times if it was night time. Don’t know why that was so important to me but I started asking around 9:00 a.m.
I went to sleep and at some point a few hours later I was back awake and a little chilly. All of a sudden the chilly went to freezing and my whole body was shaking uncontrollably and I was having trouble breathing! Oh joy…will the fun never stop??? I couldn’t get to the nurses call light but my telemetry must have set off some kind of warning because a nurse came in. She was trying to help me while she was checking my sats. I remember hearing her stick her head out the door and yell that my sats were dropping. Let me tell you…in a pulmonary unit when someone blurts out something about dropping sats you get a whole bunch of people in your room. My nurse was applying hot packs to my body and rubbing my skin to try and warm it up while several others were adjusting oxygen and checking blood pressure. My O2 leveled out at 74 percent…not exactly what any of us would want but at least it stopped dropping! Finally the heat packs etc. kicked in and I stopped shaking and my sats came back up. That episode was followed later in the night with a fever. My body was fluctuating between burning up and freezing. Wild ride!!
The next morning I woke up feeling about 5000 times better. I could talk! I was still super weak and pretty short of breath but since I’d never had pneumonia before I figured that seemed reasonable. I was sitting in bed when one of the TX docs came in to say I had a gram-negative bacterial infection in my bloodstream. She said my pheresis catheter was coming out that very day. Apparently my cath could have been the culprit in getting this stuff into my bloodstream. The good thing about my infection is that I was already on the drugs they would have administered so I was ahead of the game on this one.
By Monday the temperature swings had leveled out and they had finally figured out the trick in keeping my sats up. For breathing, I had one contraption I used while sleeping, another for walking (after a fashion), and another one for when I was sitting in bed or a chair. It was all a little cumbersome but it worked. I then spent Monday and Tuesday trying to get better and a little bit stronger so I could go home.
Lots of people don't understand why they wouldn't keep me until I was totally well. The answer is really simple - infection. Hospitals, like any place where there are a lot of people, have germs. They clean and sanitize constantly but the little buggers will still get through. When you're someone like me who has no immune system left then these bugs jump on me like white on rice! I am so susceptible to everything that I have to be really conscious of what I'm doing and who I'm around.
To try and build up my immune system, they were giving me IVIG treatments to beef it up a little. It's supposed to give me good stuff but it tells my body that I don't need any of my bad antibodies made...hope it works that way!
Now I'm home with my portable IV pump and I feel like a certified medical technician. I have my handy partner Lee the Line Man who helps me with my IV lines. Between the two of us we are up every 5 hours to bring my meds to room temperture (takes 1 hour) and then flush my line with saline then IV the meds to me by way of this little pump then flush again with saline then finish with a heperin flush. We repeat this every 6 hours. We'll get the hang of it.
Very long story short....I was sick and now I'm getting better. I hope I won't be back in before transplant but you just never know.
Love to all,
Lee, Wendy and Missy