It’s taken a while to get back on here. I’ve just been tired and busy with summer happenings. It was truly a wonderful summer. We enjoyed lots of family time including a trip to Disney World and Colorado/Utah. Jonathan was my hero driving the kids to our destinations and allowing me to fly. It helped to preserve my energy and in a lot of ways my sanity. 🙂 If you’ve driven very long distances you know how everyone can get restless and a little agitated.

I’m so thankful that I was healthy enough to walk all over the Magic Kingdom and take hikes in the Colorado mountains. I had a mild cough on our trip, but it didn’t really interfere with our plans. Recently that changed.

You can say I’m frustrated. Graft vs Host Disease is always a possibility when you receive a donor stem cell transplant. In some ways a mild amount can be perceived as good because it shows that the donor’s immunity cells are seeking out foreign bodies, i.e. lymphoma, and destroying them. However, it isn’t good when it seeks out organs and begins to attack them.

I have had mild GVHD of my liver for many months, but this summer it began to attack my mouth. GVHD makes your mouth extremely sensitive, causes blisters, and for me some gum loss. Thankfully with medication for both specific regions and a general prescription to decrease my immunity, they have responded quite well.

The more troubling GVHD that I have had is of my eyes and lungs. My eyes have been extremely irritated, dry, uncomfortable with some blurriness. Sometimes my only option has been to close my eyes for relief, and unfortunately that hasn’t worked on occasion. So, I’ve experienced a little bit of anxiety-filled restlessness when nothing relieves the discomfort. I have a great eye doctor who has been trying some new ointments and drops to hopefully allay some of these symptoms with time – I’ll see her this week to follow up.

My lungs have been more alarming in their decline. As I said above, I was able to walk all day at Disney World, hike a good distance in Colorado, enjoy walks around our large neighborhood and help the girls with tennis training. But, on the tennis courts I had some frightful moments when I could not catch my breath. I was doing pretty basic, non-vigorous tennis coaching with our girls when I could not get a good, deep breath. I finally knew I had to see the doctor when I spent our son’s entire birthday party short of breath. It can and still does cause a panicky feeling when I can’t seem to take a full breath – all I get are rapid, shallow breaths.

I’ve seen my stem cell doctor and a pulmonologist about my symptoms and we’ve added all sorts of lung-specific prescriptions, nebulizer treatments, inhalers and general immune-reducing meds. Even with all of that, my pulmonary function tests have not improved. My pulmoologist is doubtful I can recover 100% to my pre-GVHD lung function (which was excellent). I have now started on Photopheresis treatments to try and calm my immune system down, so that it will stop attacking my lungs.

Photopheresis is a pretty amazing process. It will most likely be a year-long treatment with diminishing frequency. I completed two sessions last week and there will be two treatments weekly for now. The treatment involves taking 1.5 liters of my blood, separating it out by components – we set aside the T-Cells (white blood cells that attack), then add medicine to the T-Cells, shine UV light on them to activate the medicine, which kills the T-cells and when returned to my body will help shut down the over-activity of other T-Cells.

So, that’s where I’m at. I ask for prayers to help me to be patient, appreciate how otherwise how healthy I am, and for the Photopheresis and other prescriptions to be effective. I may not be able to get back to my original baseline, but I pray there is improvement and not any worsening of my eyes, lungs, liver and mouth.

It’s taken me a little while to update my blog. Partially because I’m tired and frustrated and because I’m not so sure how clear my explanation explains what’s going on. I may be slower right now and I have to rest after the most basic activities, but I do praise God for grace and healing over the last few years. Maybe he just wants to show faithfulness one more time to me. I just need to sit back and trust in Him.