I'm sorry I haven't blogged but life has been getting in my way all week :-)
You all know that I was admitted to the hospital on the 10th and discharged home on the 15th. That was a good thing.
Then during the weekend of the 18th - 19th I started feeling like I was coming down with a cold. I haven't had a cold and/or flu for at least two years but one always remembers that scratchy funny feeling in your throat and chest. The glands in my throat and neck were tender also. I called my coordinator on call and -- off to the ER for x-rays and blood work to check for infection. Four hours later I was declared 'clean' and Lee and I got to go home.
Tuesday morning...my cold hit! I just felt lousy -- headache, chest tightness, achy, etc. I knew we had an appointment with Dr. Zaas on Wednesday and I really wanted to see him because I haven't had an appointment with him since transplant (I've been seeing other docs on the team). So...I contacted the coordinator on call and asked for something to tide me over until the next day when I saw Dr. Zaas. Tracie, my coordinator, called me back and said I had to go to clinic right then. She had talked with Dr. Zaas and neither were willing to wait a day for me to be seen. Off to clinic!
After more x-rays, blood work and PFTs I saw Dr. Snyder. She is a great doctor and I've seen her a couple of times since transplant. Short version of our conversation...the x-ray showed some 'atypical' stuff in the lungs and the blood work showed elevated white blood cells. Because I was so 'new out' (newly transplanted) and because they found rejection in the last bronch biopsy and because I was just in the hospital with the fungal infection Dr. Snyder wanted me back in the hospital so she could do another bronchoscopy on Wednesday and start treating me aggressively to try and knock all this stuff out of me!
Dr. Snyder didn't care if I got put on the 7800 floor (pulmonary) or not. She was willing to put me in any bed in the hospital and because of that Lee and I got to go home and wait for the hospital to call and tell us they had a room. That is so much better than waiting for hours in admitting! I ended up in 3100, the ICU step-down unit I had been in post transplant. That's nice because I do know some of the nurses.
When I got there Tuesday, they started me on IV anti-biotics and oral anti-biotics. I didn't know that you could take more than one at once but I'm certain these guys all know a lot more than I do when it comes to meds. On Wednesday Dr. Snyder performed the bronchoscopy and three biopsies. I had more blood work and we all waited for results.
Thursday late afternoon we got some results: First - and most important - the biopsy showed NO REJECTION! That is such a big deal!!! For the first time since transplant, my body wasn't trying, at least to some degree, to reject my new lungs. I was thrilled and so was Lee.
The results also showed lots of infection and food induced pneumonia. What that means is food particles are getting into my new lungs and causing infection and ultimately pneumonia. We needed to find out if the food was being aspirated or refluxed so more tests.
Lee got to watch the FEES study that determines if I'm aspirating food into my lungs. It's a really interesting test...they run a camera probe down your throat so that the camera is sitting right above the vocal cords and trachea. Then they feed me food dyed green and watch as I swallow the food. If I'm swallowing correctly, none of the green food or green liquid end up in or near the vocals or trachea. If the green does go in the trachea then it likely would end up in my brand new lungs. That wouldn't be good! Lucky for me all the green food and liquid went down the correct tubes and I passed the study with flying colors :-)
So now, the docs will be looking to see if I'm refluxing the food up into my new lungs from my stomach. If it's reflux then I'll have a simple surgery called Nissen fundoplication - which we all refer to as a stomach wrap. If I need to have one done, I'll go into more detail.
I know I've spent a lot of time talking about food in the lungs but this is one of the most common and serious things that can happen to a transplant patient. Food just doesn't belong in lungs and because it's foreign to the lungs, it causes infection and we can take it from there... We need to protect our new set of lungs as best we can and by ensuring food stays out, we can eliminate a whole host of problems!
Back to Thursday...the docs already had me on the correct drugs to combat the pneumonia and infection so my course of treatment was to continue the drugs and get stronger. Did I mention that I was back on oxygen? Oh yeah...Wednesday a.m. (around 4:00), the nurse came in to check my vital signs. I'd been sleeping and when she woke me up I felt just like I had - cruddy! My vitals showed my temp at 102.5 and my O2 number at 80%. It took her and I about 40 minutes of breathing oxygen to get my O2 level to an 'acceptable' level. Since that point they had me on oxygen.
The docs and nurses wanted me to keep my strength up so they encouraged me to walk laps around 3100 as much as I could. This is the same place I was after surgery and - if you recall - I was able to walk 38 laps! Well on Thursday I wasn't able to walk one lap without being totally out of breath and really weak! That probably freaked me out the most! I've always felt good about my ability to walk and 3/4 of a lap was just not cutting it!!! Everyone kept saying it was the pneumonia and my strength would come back soon. I tried walking with a walker and was able to make 2 laps. Thursday was not an encouraging day for me! :-(
Friday came and I had an x-ray and then they sent me for an ultra-sound of my upper arm where my PICC line is. They did this to make sure all was well with the PICC and the course it was taking through my body. I'm sure you've all figured out that if it's weird or not expected then it must be my body :-) During the ultra-sound they found a blood clot in my neck! So now I'm on Lovinox (blood thinner) shots in my stomach for the next six weeks or so. The shot itself really isn't painful...it's the medication. Around 3 seconds after I shoot the Lovinox in my stomach then it starts to burn for around 30 seconds to a minute. Fun Fun Fun! By the way, the PICC line was fine :-)
The x-ray I had showed edema (fluid) on both my lungs. That's a really good reason I was so short of breath. The edema puts pressure on the lungs and doesn't allow them to expand to get air. To get rid of the edema they put me on more IV lasix. I have to say it worked! By Saturday I think I eliminated all the fluid from the edema and more!
Because there aren't many tests run in the hospital on the weekends our game plan has been for me to "rest" on Saturday and today and Monday we would evaluate what needed to be done.
Here it is Sunday and I was finally able to come off of O2 yesterday afternoon and they have completed one of the anti-biotics. I'm now able to walk 4 - 5 laps which I know isn't much but it's better than when I started! I can take better breaths and I think when they do another chest x-ray the edema should be gone.
I really don't know what the docs will finally decide to do on Monday so I guess that will have to be another blog.
I'm sorry if this blog is confusing or convoluted. I was trying to bring you up to speed on a long a tiring week!
Love to all and Happy Birthday to Ronda!!
Lee, Wendy and Missy