Day +183

So far so good. Some GVHD symptoms have subsided. Eating, sleeping better and my my mood has improved. Even my skin has cleared up from those nasty rashes.

Unfortunately my eyes took a hit this time and they are still a bit of an issue. They are not making the appropriate amount of tears, which results in dry eyes that impact your vision and sensitivity to light.

It feels like I’ve left my contacts in way too long. (Those who wear them would understand)

So to help lubricate my eyes, check out this weird science:

They took 12 vials of my blood, and created 42 little vials of nutrient rich tears that I use every few hours. But....in order to keep the tears from draining from my eyes, they cauterized by tear ducts. 

The actual little hot wire, sizzling in the corner of your eyes wasn’t bad, it was the 8 little shots of a numbing agent that sucked! (Prick, sting, burn , prick, sting burn.....8 times!) 

It worked! What a difference. The nutrient rich tears stay in place longer, and I’m not having to reach for other drops so frequently.  Still can’t drive, but vision and comfort has improved a bit.

Steroids have helped a great deal, and now we are starting to back down the dosage again. We’ll see what happens next.

The good news. My team of doctors like what they see from my recent bone marrow biopsy. I am now 100% donor DNA and 0% recipient DNA.  (Blood DNA only, so I would not have any close matches in the Netherlands from a cheek swab.) Only some patchy myelofibrosis and scaring remain which will clear up in time. The new cell garden has taken root!

Recent pulmonary tests (lungs) were also perfect. No issues. 

Blood labs still continue to bounce around, but are good and my immune system is still a work in progress.

Staying the course with meds, healthy meals, regular workouts and plenty of sleep. Staying busy mentally and spiritually as well.

Day + 174

Wow, feeling much better. That was a rough December.

The GVHD gastrointestinal issues, and skin rashes have subsided for now. Unfortunately it took a bump in steroids to tame it. Of course with that comes the anxiety and “roid” rage, but staying active, meditation, and  homeopathic alternatives seem to help. 😎

A new twist is what the GVHD and prolonged use of steroids is doing to my eyes. Besides the little ulcers in the inside of my lids, they are also not producing adequate tears to keep my eyes properly hydrated. It’s impacting my vision for near and far, plus making them sensitive to bright lights, and air movement. They had to place little plugs in my tear drainage ducts to keep what I do produce in my eyes. Very odd.

Definitely can’t drive, or look at a computer screen for long periods of time. Not fun. You should see me now with my dark motorcycle glasses, and mask when I go places. Quite frightening.

My appetite is back, so I’m eating better, and I’m more active, but I’m still down almost 30 lbs.

Trying to stay as fit as I can without over doing it. (I often get yelled at for trying to do too much!)

At the start, they give you this 100 day milestone and warn ya about what side effects potentially could happen. I thought I was past it it , but apparently not! It’s a marathon, and I’m gonna finish this!

I’m in a good place right now, mentally and physically. Very grateful for all those involved in my care.

Day +162

Happy New Year!
The month of December was not fun.
I could deal with a bit of a rash on my chest and back, and the eye issues, but when it hits my guts, that’s the worst. Couldn’t eat (Nausea), and had stomach and intestinal cramps. It’s very debilitating, and fatiguing. Terrible thing to have around the holidays and all that yummy holiday food!) Lost about 30 lbs. (I don’t recommend this diet)
Saw the doctor on Wednesday and she bumped up my steroids. ( I asked about 2 weeks ago, but was told to wait. I was very frustrated)
Feeling better, and slowly starting to eat more now. But now I’m all hopped up on steroids, but I’ll take it. I’ve just increased my activity and that helps.
Good news - blood labs are looking good and my hair is coming back!

Looking forward to better days.

Since everybody is different, there is no timetable for when the chronic GVHD will stop.
Right now I’ll take every good day I get!

Day +153

Happy Holidays!
It’s kind of been a real shitty last few weeks. The GVHD battle still rages on.
Gastrointestinal issues, rashes on my chest and back, and just general fatigue.
I’m pushing through it, as it’s all part of the process. I hate taking more meds than I need to, but I gave in and started taking the OxyCodone for the pain in my gut. Man what a relief. Not only for me, but for the people around me!
The good news, my blood labs are looking great and my hair is growing back!
It’s a marathon, and I’m still plodding along.

Day +140

Bleh...Not a good week and a half.
Another GVHD flare up. This time hitting my eyes, as well as my GI tract.
It’s getting better but still not feeling 100%.
I’ve lost about 15 lbs  from this last battle. It’s not like I’m not eating, but apparently just not eating enough. It’s not a diet plan I’d recommend. Going back to multiple high calorie meals to see if that helps.
The good news is that all my blood labs are looking good.!

Day +133

Yuck

Perhaps I spoke too soon. Started to get what I thought were graph versus host symptoms over the weekend (gastrointestinal issues, dry / red eyes, sore throat, weight loss, fatigue)
Turns out it may be a virus, and Mayo is running some tests.
Had to bump up the steroids a bit (.5mg), got a prescription for my dry eyes, and maybe something for the stomach irritation. This sucks. It's like 5 steps forward - 3 steps back.

The good news, ( which makes the doctors think it's not GVHD) , is that all my labs are on the up and up.

Sucks not having a working immune system!

It didn't stop me from getting Xmas light up. ( no ladder climbing of course)

Day +130

All is well!
Triple lumen portal has been removed, and platelet counts are slowly increasing.
Now it’s just weekly labs, Dr. follow ups and other tests.
Still need to avoid crowds, watch what I eat and just be generally careful about not exposing myself to germs! Not sure when I’ll ever get off of the handful of meds I’m taking.
Unless any setbacks occur, I’m thinking about ending this blog soon.