The cough which started in January and which was still there in February, was still with me coming into March, even after two rounds of antibiotics and one round of steroids. The long story short part of my post is that Scott and I drove up to Minnesota a few days early because I just rounded that corner from "puny" to "just plain sick," and I could tell a difference. The funny part of that story is that Scott took me to the ER back home because Urgent Care does not have a CT machine, but the ER's CT machine was broke that day! I look at it as God intervened because He knew I needed to be here at the Mayo instead of at home.
Even so, Dr. Shah had moved my appointments around so I could be seen first thing Monday morning. I did not make it that long, and ended up admitted at Mayo hospital on Sunday. Turns out I have pseudomonas pneumonia and a wicked sinus infection. "Wicked" as in the doctors said my sinuses were a lot scarier than the chest CT findings. All four sinuses are not only completely full, but blocked, and my tympanomastoid (translation, ear canal) cavities are full as well. Which, by the way, explains why I've been deaf in my left ear for so long. The right side is partially full. I learned an interesting fact from my ENT--without both ears working, a person can't tell direction of sound. So I could have my phone right next to me, hear it ring, and be unable to tell from which direction the sound is. As you can tell, you also learned two new things in just one paragraph.
The drawback (well, one of them) to having pneumonia is that we are unable to complete the full workup which was scheduled for this time. We have to clear the pneumonia before we know if the test results we're getting are accurate. For example, am I short of breath because I have pneumonia or because my heart has declined? The likelihood is that it's due to the pneumonia, but it's pointless to check the heart until my lungs are cleared. No matter what day I get done here, I still have to be back on April 8th for the clinical trial, and I will be here until the 22nd. BUT!! After I'm done in April, I don't have to come back until July, woo hoo! AND! If my platelets stay where they are or above, I'll be cleared to fly next time.
The other issue going on is that, apparently and also unbeknownst to me up until this part of my journey (and now you know as well), pseudomonas and lung graft-vs-host disease present very similarly on a CT scan. The findings are called tree-in-bud opacities. Remember the game of jacks from when we were little? That's what these little things look like, literally like someone left some jacks in my lower lungs. First we have to clear the pneumonia, then I'll get rescanned during my April visit. If the pneumonia is gone but the jacks remain, I'll have another workup for graft-vs-host of the lungs.
I'm getting to that part of the transplant process I clearly couldn't plan for. I have been sick with something since I got home in December. Sure, I have good days, and I'm blessed and grateful for every day I have, good or bad. It is just, I suppose, that it's beyond frustrating to be this limited. I can do most of the "normal" daily stuff, but all of those things are accomplished at the speed of sloth (I saw a funny meme the other day about somebody doing something at the speed of a sloth on Ambien, and I just laughed out loud). I wear out before I'm even close to being ready to wear out, and I'm bound by what my physical body can do. I didn't expect it to be this profound, and I didn't expect it to be so frustrating! Yikes. I praise God in all I do, and mostly I'm praying for patience. I knew ahead of time it takes a minimum of a year to recover from a bone marrow transplant, but I think I back-dated my expectations to "a year from when I started this process," hahahaha. That's my story for now.
Part of what's going on right now is that I have no voice. Literally. At first I assumed that I must have just worn it out because of the non-stop coughing, but the doctors have said my vocal chords could be infected. They also said the cough and the hoarseness are usually the last symptoms to clear up! How is that possible? In my universe, um, obviously, the cough and hoarseness should go first. But, seriously, have you ever thought about this: you lose your voice and then, suddenly, you have a million reasons to need it? I can't talk on the phone, I can't order my own food at a restaurant, I can't sing out loud with my Christian music. When I couldn't stop itching last summer, I thought that was the worst symptom to have. Now, I can't stop coughing, and I'm thinking that's right up there on the do-not-call-me list. I know I'm being a little bit silly, because so many others going through transplant have gone through every do-not-call-me symptom there is. I'm very blessed that it's been so mild.
I've been putting off writing because I didn't want to murmur, grumble or complain (my commitment to God at the beginning of this journey), and I wanted to share information about the journey which might help others. As I write, I feel better! Yes, these are tough times and, yes, they have been challenging, but I continue to experience God and feel His love every step of the way.
One of the people I've asked for prayers before, Bryan, has been waiting on a heart for a very long time. He got so bad that he was put into ICU until he got his heart. I'm very, over-the-moon, excited and deliriously happy, to report he got that call this week. He received his new heart just in the nick of time, two days ago, and is doing well. Prayers are answered, all the time, all around us. This one is special to me because Bryan was in the transplant house most of the time while I was here. Scott and I took over as people here the longest when Bryan went home (his insurance opted to pay for air flight instead of covering the house). Now he's in the hospital with a brand new heart, AND he'll be coming back here and on the same floor as we are. I can't wait to see him. Now I can truly say that everyone I met while here, who were waiting on organs, have all received them. God is so good.
Every day I add to my testimony. Last April I stood in front of my church CR group and announced that, in a year, I would be back to give my testimony about how God saved me. It's almost that time, and I'm still here to give that testimony, which only gets stronger every day. I pray that, in YOUR lives, you find something every day to add to yours. In Jesus' name, AMEN.