So, I started having my GVHD symptoms back at the beginning of January, saw my oncologist at the end of January, and had my Long Term Follow up (LTFU) marathon appointment today. I had to fast for my blood tests, then met with a few different docs and a nurse over the course of many hours.

If I’ve been out of touch this week, I apologize. I have literally spent all of my energy on breathing. It’s amazing how having to think about being able to breathe will make you forget all of your other problems.

It all started with this cough that I’ve had forever. I have told the doctors and nurses at every appointment since last spring that I have a cough that happens when I go from laying to sitting, sitting to standing, or lean down, but they haven’t ever done anything about it and it’s never been more than an annoyance. I figured it was just from radiation scar tissue in my throat.

The cough started getting worse when I was home in Texas, but it was still just a cough. I found that if I took quick breaths through my nose that I could calm it down. Since I got back here, on the 7th, the cough and my shortness of breathe have progressively gotten worse. On Saturday, the 11th, I was up in Friday Harbor at a client open house, which was super fun. Many people say they are going to do it when their house is done but this client actually did and was so appreciative of our work, which is nice. On the way home, I had to wait outside about 20 minutes to get on the ferry (and was freezing of course) and then you have to walk up 2 flights of stairs on the ferry. That was the first time that I was so out of breath that I was scared I would not be able to catch my breath again. I have never had this feeling and it was terrifying.

I had an appointment with Dr. M that Monday. I told him about the incident, he didn’t seem overly concerned since I was fine at that moment and told me he’d have to see what they say at the LTFU appointment. 8 days away. So, my objective was just to keep breathing from last Monday until today! It has not been easy. Saturday my heart rate was up and my breathing was heavy for hours and I just couldn’t catch it. The few times I walked around the neighborhood  were laborious, especially with even a slight uphill.

So everything I do and every little move requires thought and foresight–getting up slowly, drinking water before I get up, trying not to lean down for anything (much easier to deal with the stackable washer/dryer than the dishwasher), trying to head off the worse time which is getting up at night to go to the bathroom with Nyquil. Even then I am still left breathing heavy and coughing (a very shallow, dry cough-when I try to breath deeply it catches in my throat).

Sorry I am probably boring a lot of you to tears with this. I know it seems ridiculous that something like this could consume my life, but it has.

After being poked, prodded, posed, and photographed today, they are pretty sure they are going to treat the skin/joint/muscle tightness issues with the standard GVHD protocol: Predisone, and some other drug like Rituxan (which I happen to have for Lymphoma but they use it for many things) to counteract the immunosuppressing of the steroid. Super annoying, but that’s how they do it–it’s what they use and it works. They are almost certain that the lung issues are also GVHD–if they are not, then they just don’t know. I have to get Pulmonary Function Tests tomorrow (which my mom knows more than anyone I HATE–I would rather get 5 bone marrow biopsies than have to breath full force through my mouth into those tubes, have the oxygen cut off, etc, for the overly cheery and not so subtly insulting “Pulmonary Pat”). In my condition I don’t know how I’m not going to pass out). They will have a clearer diagnosis of lung GVHD after that, if that’s what it is.

Here’s the kicker: they want me to have OXYGEN and are delivering it tonight. So please don’t make fun of the healthy looking 33 girl with an oxygen backpack on should you see her around town. I am supposed to use it before bed and when I am out and about. They did this test where they walk you around monitoring your oxygen and apparently mine was so low I should have been begging to sit down. I don’t know if it will help with any of my symptoms but I think it will help on the wear and tear of my body being deprived of oxygen and keep me from passing out (which hasn’t happened).

So, that’s the latest in the saga of Klaus vs Marla vs Me. All of this malarchy seems to indicate that Klaus is winning.

Just got the oxygen delivery, I’ll have to take a picture for next time. It’s a ridiculous contraption. Thanks for keeping up with me. I’ll let you know what happens with the tests tomorrow.