To catch up, I spent last summer and fall in Rochester,--a lot. My graft-vs-host disease got particularly aggressive after my July visit, so in October I returned for 8 weeks to begin ECP and UVA treatments.
UVA is rather like going to a sun tan booth which, believe it or not, I have never done. One, I am already dark-skinned by nature, and two, I was leery of the harmful side effects that were possible. Apparently, though, UVA-1 therapy has been shown to be quite helpful in the treatment of skin graft-vs-host sclerosis. I go into this little room, strip down to my birthday suit, put these special glasses on, and stand in the tanning booth. I have to have 35-40 treatments all together. My first session was only six minutes long, because I have to build up how many joules I can do in a day. My last session was 17 minutes.
ECP stands for extracorporeal photophoresis. I call it cancer dialysis. I get hooked up to this machine that looks like some whiz kid's science fair project, complete with lots of tubing and lights. The machine extracts 300 ml of blood from my body, then separates the white and red cells. After the cells are separated, the white cells are treated with medicine -- the nurses says, "now you're cooking." After the cells are treated, the red and white cells are recombined and put back into my body. At the time, I had a special port called a palindrome, which is very high-powered and let me get the treatment done in about an hour and a half. Unfortunately, I had to have the palindrome removed due to a staph infection and am waiting to get it put back in.
After the eight weeks in Rochester, during which time my dear friend Sarah stayed with me (more on this in a minute), I went home for what was supposed to be 9 days. I ended up staying at home until after the kids' Christmas break and came back to Rochester a month ago.
When I came up in October, Sarah and I came in on a Saturday. I was coming up here for treatment, so I practically promised Sarah a vacation. I wasn't sick, I was only going to go to treatments, and I was going to start writing again! Well, we got unpacked on Saturday, ordered groceries online Sunday for pickup Monday. On Monday, Sarah went to pick up groceries, and I went to Mayo for lab work. I kid you not, I wasn't back to the Gift of Life 20 minutes before I got a call from Charlton 9 (the BMT unit) that Dr. Shah was admitting me! Let me just say that for the rest of the visit, which turned out to be no vacation, Sarah was the ultimate caregiver, and I shall be forever grateful she was here with me.
I spent the next 16 days in the hospital. Apparently my body was producing an enzyme (called LDH) in scary quantities. As Dr. Shah said, "well, you've run at 400 before, and that's not the best, but it is what it is. I get a little nervous when the LDH goes over 500, and I get downright worried when it goes over 600." Normal LDH is 122-222. Mine was almost 1,100. My liver enzymes were also elevated, for literally the very first time since I had the transplant. And my counts, which had ALMOST gotten back to normal, tanked again. Low platelets, low red cells, low white cells.
On October 2nd, I had a series of procedures, the idea being that I would only have to be NPO one time. The second procedure was a liver biopsy, and the third was placement of the palindrome. After I was returned to my room, I began experiencing severe abdominal pain. The RRT team (traveling ICU unit) was called to my room, and I was having chest pain by this point, so they gave me a nitro tablet. I proceeded to throw up and then my blood pressure got really low. RRT rushed me to ICU. (Here my memory gets a little foggy.) The last thing I remember is trying to sit up, gasping for air, saying, "I can't breathe, I can't breathe."
Apparently I was part of the 0.35% of the population that suffers a bleed after a liver biopsy, and I was bleeding internally. I went into hypovolemic shock and then into cardiac arrest. I came to with the sensation of the CPR going on. Scott says they did it right because they broke a rib and cracked several others. In case you're wondering, yes, broken ribs do hurt, and they do take a while to heal.
Interestingly enough, while I don't remember anything that happened while I was "gone," I do remember the distinct sensation of coming "back" to my body from a garden-like area. I clearly remember closing the door to the area, seeing the remnants of a flower, and a butterfly escaped. I walked over to this opening where my body was, and I climbed back in. It was an upward movement.
I opened my eyes, and said, "Hello, Bobby." Bobby was the name of the nurse practitioner who was performing CPR. I heard Bobby say, "she's back," and I heard various sighs of relief around the room. Sarah was in the waiting room this whole time, and she had heard the overhead speaker calling for Code Blue, and she was really upset. She says someone called for a pastor for her.
And bless Dr. Shah, he knows me so well, and knows my sense of humor so well . . . he came to the ICU right after all this happened, and he says, indignantly, "WHAT ARE YOU DOING?!" He also offered to call Scott and explain what was going on. It was a little disconcerting that the ICU staff reassured me by saying, "we're going to do everything we can to keep you alive tonight, but this is serious." I was taken for a procedure where they put this foam inside my liver to stop the bleeding, as they couldn't find the source. I had a hematoma and blood in my abdomen for a month before it all cleared up.
The thing about the October incident was that it was coming after complication after complication after complication. In August, I had had a couple of episodes of really extreme chest pain. This resulted in a nuclear stress test. Which resulted in a heart cath with two stents being put in. I had an 80% blockage in what is nicknamed the "widow maker" -- in the valve even, and another 70% blockage in the ramus.
Two weeks after I came home from the hospital after the stent placement, I had a mini-stroke where I experienced full right-side paralysis for 10 minutes. It was scary. Spent a few days in the hospital where the doctors determined I had not had a full-blown stroke, but TIA was the final diagnosis.
Two weeks after the TIA, I was battling yet another respiratory illness. Went to the cardiologist for my cardiac followup appointment. Was so out of breath by the time I got to the check-in window I could not speak. My cardiologist ordered a respiratory panel, and it turns out I had RSV. Now, RSV is something that is really hard on babies and small children, and the elderly. Who knew it was also bad for transplant patients?! Not me. I called Mayo and asked, "I have RSV. Is this one of those viruses we have to worry about, or one of the ones we can just let run its course?" Needless to say, I was hospitalized again. Apparently RSV is 60-80% fatal in transplant patients if untreated. My RSV treatment was my first foray into immunoglobulin therapy.
So, fast forward til now. I am in a holding pattern at Mayo. As I stated earlier, I had to have my palindrome removed because it got a staph infection. My lungs just keep getting infections. It's like Whack-a-Mole -- one area gets stable and another area of concern pops up. I was in the hospital for another week after I got here, and then went on oral antibiotics. One of the antibiotics I am on is a conflict for UVA treatment, so I can't restart the UVA treatment until I am off that antibiotic.
Whatever the process is that is causing cell destruction continues, so I had another bone marrow biopsy this week and am awaiting results. At this point, I have no realistic expectation we're going to figure out what's wrong. Dr. Shah said once that one of two things will happen: either the problem will go away on its own and we'll never know what it was, leaving us with great curiosity; or the problem will get worse and give us more clues on what it is. What appears to be happening is that it is resolving on its own. The LDH has come down from the 700s (where it was when I was discharged in October) to the low 300s. I am still what is called "pancytopenic" == meaning my white cells, my red cells, and my platelets are all still below normal. Particularly stubborn have been the white cells, and my absolute neutrophil count (ANC) struggles to stay above the danger zone of 0.5 (with 1.5 being the low normal).
Since my counts are not coming back up to normal, I was given another treatment of the immunoglobulin therapy, called IVIG. This is supposed to help my body's immune system work better. I'll be receiving these treatments once a month. I also restarted the IV Rituxan, once a month. My favorite news though, is that my steroids have been tapered down from 80mg a day to 5 mg a day (it's taken a few weeks, but here we are).
This is the first time I've come to Mayo that I've been so disorganized getting settled in. For one thing, of course, I was hospitalized practically as soon as I got here, so that's understandable. And when I first got out of the hospital, I was very weak and short of breath. I am still both of those things, HA! but at least not as bad.
Today I got a bit done getting stuff put up. Then, tonight, I had this very strong sensation that God gave me this time to begin writing again, and that I have been putting off restarting my blog unnecessarily. So I did my prayers, did my Bible study, and actually wrote all this!
I opened my Bible to Psalms tonight. Psalms is a book I haven't spent much time on yet. I feel I have so much to learn from the New Testament that I haven't ventured into the longer Books of the Old Testament. However, I purchased The Hebrew Bible recently, which is fantastic. (The author is a professor at Stanford who spent 25 years translating the original Hebrew into English, correcting translation mistakes, AND providing a very thorough set of notes as he went.) The Hebrew Bible has me reading more into the Old Testament.
Anyway, I open the Bible and my eyes travel to Psalms 6, with the headline "A Prayer of Faith in Time of Distress." The psalm is about someone struggling, and making the couch wet with tears each night. I thought, nah, this one doesn't apply to me, so I'll read the other one on the page. So I read Psalms 5, "A Prayer for Guidance." I thought, yep, this is more what I need tonight.
Am I not just the typical resistant Christian? I got out The Hebrew Bible and reread those two Psalms with the annotations, and it became uncomfortably clear that Psalms 6 was indeed the Psalms I needed to "hear" tonight. The person is ill, and is asking the Lord for mercy. He is asking the Lord how long it will last? He is asking to be saved, for mercy's sake.
I admit I have been questioning how long all this is going to last. Especially right now, when everything seems to be on hold. I feel guilty for even having those thoughts! I do pray daily, and I do praise God daily, but I do find certain doubts creeping in. Is it because I have not traveled this path the way God intended the reason it's taking so long? Am I not exhibiting enough faith? Or enough courage? I find myself worrying I will cause others to question God's timing, because things keep popping up. On one hand, I feel extremely blessed that every single situation has been caught before something disastrous occurs. On the other, if I was doing this journey "right," would those things happen at all? These are the thoughts I have been processing. Even when I question these things, I always seem to land on the spot which says, "God's timing is perfect. His plan for me is perfect. All is well with my soul."
Tonight I finally broke through the resistance and sat down to write. I want to be well. I want to claim divine healing. I know sharing my process is part of that. I pray tonight finds everyone experiencing peace in the process. AMEN.