The GVHD battles still continue.
Other than that, all is well, and it’s nothing I can’t handle.
I’m ending this blog today, so if you need updates please message me directly.
Thank You for all the support!
Monday, May 11, 2020
Saturday, May 2, 2020
Day +284
All is well. Still in lockdown!
Eyes and foot are still slowly healing.
Last blood labs looked great, all numbers are in the normal range except for my immunoglobulin. Its very very low, which means no antibodies, which means no immune system!
I asked Dr. Palmer how long it typically takes for the IGG to ramp back up, and she said it varies for each person. So I guess I just sits and waits.
Eyes and foot are still slowly healing.
Last blood labs looked great, all numbers are in the normal range except for my immunoglobulin. Its very very low, which means no antibodies, which means no immune system!
I asked Dr. Palmer how long it typically takes for the IGG to ramp back up, and she said it varies for each person. So I guess I just sits and waits.
Wednesday, April 1, 2020
Day +252
All is well, even with Covid19 lurking.
Pretty much in lock down now, as we had to step up the shelter in place option due to Covid19.
I don’t go anywhere except to Mayo for required appointments. (Mayo has limited the appointments now to so it’s kind of nice walking into empty waiting rooms) Fortunately I’m pretty much used to being confined to the house, and I’m grateful for it as I hear more and more stories of selfish a-holes not taking the stay at home thing seriously.
Still have the GVHD issues with my eyes, (which seems to be getting better), my skin (hyperpigmentation), and that slow healing wound on my left foot from that infection.
** stop reading now if you are squeamish**
So, the slow healing wound got so deep that there were tendons exposed. Ya, freaky. Had to see a wound care specialist, orthopedics, and plastic surgeon all in one Mayo visit. Basically, it’s too risky to do any surgery, so I’ve been told to keep it covered, and apply medi-honey to keep it sterile and moist. They will reassess at the end of the week. The slow healing thing is due to the meds and steroids, yada yada and again I was told “it happens”. There’s a little pain, but mostly at night. (That’s what the oxy and an indica strain are for!)
I’m getting plenty of sleep, eating well and excersizing. Starting to back off on the steroids and perhaps other meds in the months to come.
BTW - it is also day 18:of our family shelter in place. School has been cancelled for the remainder of the school year, so we’ve taken to home schooling and making sure online assignments are completed. Soccer is pretty much over as well, now it’s just a matter of keeping that kid in shape and working on skills. Luckily we have a big enough house so that we can get a break from each other!
Be safe
Practice social distancing
....and go wash your fricken hands!
Pretty much in lock down now, as we had to step up the shelter in place option due to Covid19.
I don’t go anywhere except to Mayo for required appointments. (Mayo has limited the appointments now to so it’s kind of nice walking into empty waiting rooms) Fortunately I’m pretty much used to being confined to the house, and I’m grateful for it as I hear more and more stories of selfish a-holes not taking the stay at home thing seriously.
Still have the GVHD issues with my eyes, (which seems to be getting better), my skin (hyperpigmentation), and that slow healing wound on my left foot from that infection.
** stop reading now if you are squeamish**
So, the slow healing wound got so deep that there were tendons exposed. Ya, freaky. Had to see a wound care specialist, orthopedics, and plastic surgeon all in one Mayo visit. Basically, it’s too risky to do any surgery, so I’ve been told to keep it covered, and apply medi-honey to keep it sterile and moist. They will reassess at the end of the week. The slow healing thing is due to the meds and steroids, yada yada and again I was told “it happens”. There’s a little pain, but mostly at night. (That’s what the oxy and an indica strain are for!)
I’m getting plenty of sleep, eating well and excersizing. Starting to back off on the steroids and perhaps other meds in the months to come.
BTW - it is also day 18:of our family shelter in place. School has been cancelled for the remainder of the school year, so we’ve taken to home schooling and making sure online assignments are completed. Soccer is pretty much over as well, now it’s just a matter of keeping that kid in shape and working on skills. Luckily we have a big enough house so that we can get a break from each other!
Be safe
Practice social distancing
....and go wash your fricken hands!
Saturday, March 7, 2020
Day + 227
All is well. Had a great week!
Here’s the latest report from my doctor from our last visit.
“CHIEF COMPLAINT/REASON FOR VISIT
A 56-year-old man with post ET myelofibrosis,Day + 218 matched unrelated donor allogeneic peripheral blood stem cell transplant with Big Bu Flu 07/24/2019.
HISTORY OF PRESENT ILLNESS
Mr. Sworan is here with his wife. He had developed pain, redness and swelling to his left dorsal foot 2 weeks ago and was started on IV antibiotics 2/12. He doesn't recall suffering any trauma to his foot. He feels that it is improving significantly, he just has a residual skin wound with granulation and necrotic tissue. He denies any fevers or chills. No n/v/d. Rash quiet, just hyperpigmentation on torso and face now but fading. Still with ocular GVHD but slowly improving.”
So I’ve got that going for me, which is good.
Since My immune system is still suppressed, I really need to be aware of where I go and who I’m around due to this corona virus thing. I was being careful before, but now I’m very concerned about crowds , who or what I touch, and very liberal with the hand washing and sanitizer.
I felt odd about the mask wearing before, now I wonder if people think I have the covid-19 when I’m out and about. The panicking is getting a little crazy. (Not me, just the rest of the world)
Spring break is in a couple of weeks and every idea I come up with gets shot down by nurse Ratchet.
(Umm, coo coos nest reference)
So far it might be Top Golf. It seems to be the least risky.
I really wanted to go skiing. Dammit.
Here’s the latest report from my doctor from our last visit.
“CHIEF COMPLAINT/REASON FOR VISIT
A 56-year-old man with post ET myelofibrosis,Day + 218 matched unrelated donor allogeneic peripheral blood stem cell transplant with Big Bu Flu 07/24/2019.
HISTORY OF PRESENT ILLNESS
Mr. Sworan is here with his wife. He had developed pain, redness and swelling to his left dorsal foot 2 weeks ago and was started on IV antibiotics 2/12. He doesn't recall suffering any trauma to his foot. He feels that it is improving significantly, he just has a residual skin wound with granulation and necrotic tissue. He denies any fevers or chills. No n/v/d. Rash quiet, just hyperpigmentation on torso and face now but fading. Still with ocular GVHD but slowly improving.”
So I’ve got that going for me, which is good.
Since My immune system is still suppressed, I really need to be aware of where I go and who I’m around due to this corona virus thing. I was being careful before, but now I’m very concerned about crowds , who or what I touch, and very liberal with the hand washing and sanitizer.
I felt odd about the mask wearing before, now I wonder if people think I have the covid-19 when I’m out and about. The panicking is getting a little crazy. (Not me, just the rest of the world)
Spring break is in a couple of weeks and every idea I come up with gets shot down by nurse Ratchet.
(Umm, coo coos nest reference)
So far it might be Top Golf. It seems to be the least risky.
I really wanted to go skiing. Dammit.
Wednesday, February 19, 2020
Day +209
My bloody valentines.
So, long story short, got an infection on my foot. Not sure when, not sure how, but my suppressed immune system is the gift that keeps on giving. (I was told stuff like this happens) It was bad enough to warrant IV antibiotics.
Since I needed multiple doses during the day, a pic line was inserted into my arm. No big deal right?
Well, apparently they could not get the insertion point to stop bleeding, and I had to walk back into Mayo twice to get them to fix it! (Again, told this shit happens) Lauri and I had a very romantic morning at Mayo that day.
..but wait there’s more, and it’s pretty awesome.
The pic line allows me to self administer the multiple doses, (twice a day at first now it’s 3 times a day). Our Home Health Care delivers the meds, instructed us how to administer the meds, and will even come out and take blood lab samples. We are so grateful we don’t have to make multiple trips to Mayo for this!
The coolest thing is that the IV bag is a pressurized little hand grenade that once you hook it up and release the clamp, the IV push begins. Pretty fricken awesome .
Other than that, all is well, just frustrating that I’ll be chugging along, feeling great then shit like this happens. I’m truly being tested but will not be defeated!
The healing goes on! Thanks to my therapy doggo.!
So, long story short, got an infection on my foot. Not sure when, not sure how, but my suppressed immune system is the gift that keeps on giving. (I was told stuff like this happens) It was bad enough to warrant IV antibiotics.
Since I needed multiple doses during the day, a pic line was inserted into my arm. No big deal right?
Well, apparently they could not get the insertion point to stop bleeding, and I had to walk back into Mayo twice to get them to fix it! (Again, told this shit happens) Lauri and I had a very romantic morning at Mayo that day.
The pic line allows me to self administer the multiple doses, (twice a day at first now it’s 3 times a day). Our Home Health Care delivers the meds, instructed us how to administer the meds, and will even come out and take blood lab samples. We are so grateful we don’t have to make multiple trips to Mayo for this!
The coolest thing is that the IV bag is a pressurized little hand grenade that once you hook it up and release the clamp, the IV push begins. Pretty fricken awesome .
The healing goes on! Thanks to my therapy doggo.!
Wednesday, February 12, 2020
Day +202
All is well. Since my labs and doctor follow-ups are a little more spaced apart, there really hasn’t been much to report. Until today!
My eyes are continuing to heal, but it’s still going to be a few more weeks. Luckily we have multiple drivers in the house.
Still taking a handful of meds, but only a small amount of steroids for my stomach. So far so good, but my body decided to reward that with an infection in my left foot that requires an antibiotic via IV for the next 5 days. WTF! Not sure how it happened, but perhaps the suppressed immune system may have something to do with it. All it takes is a cut or scratch that goes unnoticed. Still can’t figure it out, it’s not like I walk around barefoot. It’s good that we caught it.
Blood labs looked good. Getting more activity in, sleeping and eating well.
Taking it all one day at a time.
My eyes are continuing to heal, but it’s still going to be a few more weeks. Luckily we have multiple drivers in the house.
Still taking a handful of meds, but only a small amount of steroids for my stomach. So far so good, but my body decided to reward that with an infection in my left foot that requires an antibiotic via IV for the next 5 days. WTF! Not sure how it happened, but perhaps the suppressed immune system may have something to do with it. All it takes is a cut or scratch that goes unnoticed. Still can’t figure it out, it’s not like I walk around barefoot. It’s good that we caught it.
Blood labs looked good. Getting more activity in, sleeping and eating well.
Taking it all one day at a time.
Friday, January 24, 2020
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.
Wednesday, January 15, 2020
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.
Friday, January 3, 2020
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!
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!
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