Just when you think - you realize you probably shouldn't ...

So I have decided after the last week that I will not being saying that I am going to be able to relax this summer ever again. April 30th landed me in the ER at the transplant center with sharp stabbing back pain every time I tried to take a deep breath. I woke up feeling relatively okay, but as the day went on it became progressively worse and more obvious that I was not okay.

Turns out after an EKG, CT scan and x rays that I had a "spot on my lung" that looked like Pneumonia and a bit of Pleurisy (which is what was causing the stabbing back pain. I was admitted Monday evening for the docs to do some tests and start me on IV antibiotics so we could figure out what had happened over last weekend. I had appointments in April 26th for an x ray and breathing test and those seemed normal, so this was and still is puzzling for me that in 4 days my status changed so drastically. 

After the docs completed a bronchoscopy, for those that don't know basically a scope goes into my lungs (bronchi) cultures are taken, sometimes biopsies and the airways are visually inspected for any signs of inflammation or infection, we had to wait a few days or results. I was getting Vancomycin and Cefepime IV. Wednesday some preliminary results came back and I have CMV, Cytomegalovirus, and that is what the docs believe caused my symptoms on Monday, so they started treating me with an antiviral IV as well. I was sent home Friday morning and am now only receiving an antiviral twice a day in hopes that will kill off the virus and cause it to go dormant again. 

I am now mildly concerned that this may more largely impact my lungs than I had imagined in the beginning. I go back this coming week to have a follow up with the docs and to have another xray and breathing test I am sure. I am simply hoping that there hasn't been much damage done to my lungs. The docs warned me a few months ago, when they started treating me for Chronic Rejection, that the biggest concern would be me getting sick. If I get sick they have to keep an eye on my immune system as it will flare up and could cause the rejection to become more severe, but they wouldn't be able to increase my immune suppression right away because increasing the immune suppression could cause me to become even more sick. It is like a vicious cycle. I just hate the not knowing what is going to happen. I was just starting to balance out and become stable. Ugh ... stupid CMV ... stupid immune system.

I did get to go to the Art's Market with my best friend today which was nice. I have never been, so it was neat. It reminded me of some of the shops at Pikes Market in Seattle or under the Banyan Tree in Maui, a bunch of homemade jewelry places, clothing and a lot of organic soaps, lotions, dog foods/treats and things of that nature. I also got tarot cards read, which was interesting. Left me a little confused at first I am not going to lie, but after thinking about it I think my friend and I were able to put the pieces together once we left. I also got to paint a dog treat jar at Doing Dishes with my mom. I can't wait to pick it up next week once it is fired and complete. 

Overall a good day, I am tired after being out pretty much all day though. I feel like an old person, it is 10pm on Cinco de Mayo and I am laid up at the house using the fact that I was in the hospital all week as why I am not going out tonight for any Cinco de Mayo festivities. I am going to go out for a bit tomorrow. and I need my beauty rest. Okay primarily I want to spend some time with my dogs and I haven't seen them all week. Love my pooches.

Changing

So the past few months have been a bit hectic and full of well honestly crap ... with a little bit of good thrown in. I have gone through about 3-4 different treatments for Chronic Rejection and this last one seems to maybe be working. I say maybe because I am afraid to get my hopes up. I started this whole mess at 2.9 liters of lung function and am now sitting at 2.00 liters roughly, with my lowest being 1.85 liters. I was told at my last appointment 2 weeks ago that if the medication change the doctors were trying did not work that I would be facing re-evaluation for another transplant.

Not the news anyone wanted to hear. Right now my biggest concern is getting my blood sugar under control again and keeping an eye on my kidneys. With all of the medication changes and the fact that my docs maxed out my anti rejection medication my kidneys had taken a hit. I have had swelling in my ankles and feet, which is joyous. I am hoping that over the coming weeks and month or so that issue will go away.

I am cutting hours back at work in order to give myself a break. It sucks to not have the same money coming in as I always have, but I am getting more and more drained each week that I am working the same full time schedule. I have started the processes for all of the stuff I need to do, now it is just a matter of completing all of the things I need to get done in order to cut my hours back, get back on disability, get my insurance changed and so on.

I go back to the doc tomorrow for some more testing to see if the new meds are doing what the docs what them to do. If so then it looks like I will have dodged the re-evaluation bullet for now. I am hoping for that outcome, but am mentally prepared for anything. As I told a friend of mine before her transplant "Hope for the best, prepare for the worst."

In other news - Easter was fun. I got the dogs some toys and of course dog treats. I don't think they understood the reason, but they were happy nonetheless. Now I am just sitting here thinking of how I need to be in bed but continuing to play on the computer. I guess on that note I will force myself to log off. I just wanted to post an update. I have been meaning to for weeks but have had issues with my computer and blogging via phone just isn't the same.