New Transplant Day Zero

Hey, more news. Mark's stem cell transplant has been moved: The first likely day is Thursday, September 3. (Day zero) It is just difficulty lining things up. It's not sickness. Because it is so far away, Mark has to have a regular chemo treatment in between.   -Susan

Good News....

I just finished my Pulmonary test. Last time I got a 72. I needed an 80 to get in the trial. Today I got an 85. Yea

Heading to see the Nurse to see what is next. Will keep you posted

Sabbatical for lungs

It looks like the lung medicine is working.  Mark can walk longer distances each day. 

The inhaler medicine is fluticasone propionate and is a corticosteroid. -Susan

Next step with lungs

Mark is taking an inhaler steroid twice a day and walking to strengthen his lungs.

I have been teaching him how to bubble (singing practice technique for strengthening your lungs).

His next lung test is on July 16 (Thursday). - Susan

Clinical trial

The trial is very specific.  Each patient has to have each body part working in a good way.  It makes the data better, so we learn more.

And it makes the FDA happy. -Susan

Timeframe

It looks like ten days of meds for the lungs and then a lung test.  He still has a PICC line and I have to take a class to learn to flush it.  -Susan

Discouraging news...

My Doc called last night. He said the Toxo test was negative that was the good news. He then said the bad news was I did not do well on the Lung tests. He said I only got a 72% on a particular test when the company that does the trial requires an 80%. He said he made a case to make an exception but they declined. 

So everything has been put on hold. The good news is the donor has agreed to hold. My Doc asked about lung problems and I recounted my episode with pneumonia. We are going to meet Monday to see if we can come up with a plan to get my lungs in better condition.

More about the Antibody Test...

Janice asked what the antibody test meant. I tested positive for the Toxoplasmosis antibody. This is a common infection that a standard immune system handles quite well. The positive antibody test means i have had it. The question is when. The second test that we are waiting on will answer whether I have an active infection or that I just had it in the past and it is now gone. If the second test comes back positive, it will need to be treated before I continue. We will see.

Today was port day..

Had 2 surgical procedures today. One took out the port in my chest. During the second one they put in a PICC line in my arm to make infusions in my arm easier

Met with my main Doc today. All my tests are good except I came back with a positive antibody test he did not like. They sent out another blood sample to the Mayo Clinic. Results need to be back before I start Chemo on Sunday. Fingers crossed it is negative.

How the day numbering works...

If you noticed I started the last post with "Day -10". Today is day MInus 10. Right now we are counting down to Day "0". Day 0 is the day I get the Stem Cell Transplant which is July 10th. After that July 11 will be Day 1

Recovery after Transplant is broken down in stages Day 1 to 15, Day 15 to 30, all the way to Day 100. We will elaborate further as we enter that phase.

Another day of tests..

Day -10.  Today was a lighter day of tests. An EKG, PVT (Pulmonary), CT, and Chest Xray. The tests were scheduled to start at 8 and finish by 2pm. The people here are real cooperative and they got me in earlier than my appt times so I was able to get it all done by 10 am. That was nice. 

Tommorow is just one doctor consult in the afternoon, so we get to rest in the morning.

 

And the blood type is...

Mark's blood type is A negative 

The donor's blood type is O positive.

When Mark's new immune system matures, his blood type will change to O+ like the donor. - Susan

And the donor is...

Today, we saw Kate and she gave us some donor demographic information.  The donor is male and 20 years old.

She said males have more stem cells, but females show up to appointments more reliably. - Susan

Susan: Introduction

This is my first post as the wife.  I will post when Mark is unable.

Also, Mark thinks that I will be the human interest side of the transplant.

Testing Day 1...

Day -11.  Today was first day of tests as well as doctor consults. Started with an Echo and then blood. It was a record setting day for me. They took 34 vials of blood. I asked if they were giong to leave any blood for me.

Finished off the day with a bone marrow biopsy. Always such fun. Tommorow more tests.

Made it to Houston...

The plane ride went as scheduled. Had a car service waiting. Made it to Rotary House in time for breakfast.

Neither one of us got much sleep last night. Time for a late morning nap....

Packing up to go....

Susan and I are mostly packed and ready to go Sunday. We have a 6AM plane so that is not fun.

MD Anderson has a full list of tests for next week as well as doctor consultations. They will be checking Heart, Blood, Lungs, and Bone Marrow Biopsy. They are even doing a CT scan. I asked what they are scanning, figuring it would be my back or bone marrow. It turns out they will CT my head so they can check my sinuses to be sure I do not have a cold started. They Truly leave no stone unturned. 

A Slot Date of July 10th has been set...

 I received some great news from Kate at MD Anderson. I have officially been given a slot date of July 10th.

This timeline works well for us, as we already have a flight scheduled for June 28th. Following my discussion with Kate last week regarding the four available donors, she outlined the next steps: I will undergo outpatient testing with results expected by July 3rd. If everything looks good, I will begin the pre-transplant chemotherapy drugs then.

I was surprised to learn that my doctor will be administering the pre-transplant chemotherapy on an outpatient basis. Although I expressed concern about the side effects, Kate assured me that I should be fine. She did note that I will likely feel quite poorly for a while after the stem cell transplant on the 10th. However, a major advantage of the Orca Trial is that it aims for a better outcome with a less intensive chemotherapy regimen beforehand.

They say the date of a stem cell transplant is like a second birthday. Since I had my heart transplant on January 29, 1993, July 10th will mark my third birthday and the official start of "The Double Bonus Round."

Donor Match in Progress...

I called Kate at MD Anderson. She said the good news is they have 4 donors who sent in samples and are in process. As she says it only takes one to match. From the info it looks like it might take a while longer. So I am going to push out the date we leave until the 21st of June. She said to check back next week.

Last day of Treatments This week

Today marks my last treatment for the week. I have been doing well over the last few weeks; I was able to drive myself to work for three days last week, and I drove myself to all of my treatments this week. I am happy to take these small victories.

If everything continues to go well, this should be my final treatment before I head to Houston.

A possible Donor has been found...

I spoke with Kate in Houston last week, and she had some great news. A donor has been located, and samples have been sent to her for testing. She mentioned that it takes about two weeks to verify the match and noted that a backup donor is also available.

Regarding the timeline, Kate suggested mid-June. I have booked my flights to Houston for June 14th. Let’s keep our fingers crossed for a positive outcome.

Link to Orca Bio Press Release

I found a link to a December 2025 press release on the Orca Website. This has more details if you are interested. 

The Stem Cell Transplant Trial...

Initially I was referred to Johns Hopkins and Duke University for evaluation for a stem cell transplant. We went to Johns Hopkins and visited the Doctor. He was very thorough. He said the big problem with that is unusual is they would need to match both me and my transplanted heart. After careful consideration he concluded that I would be better off with just treatments. At Duke we talked to the doctor and he flat said he would kill me if I had the stem cell transplant.

Enter MD Anderson. They said I would be eligible for a current trial. It is called the Orca Trial. This trial has been going for 6 years. I am told it will be the standard of care when it is released.

The Orca trial is better because it uses lighter Chemo at the beginning. it also has a much improved outcomes. My doctor says that they are highly interested in transplant patients. All in all this looks very promising. I have posted more info on the Orca-T trial. on a separate page.

Good News from MD Anderson in Houston!

We made our second trip to MD Anderson in Houston during the last week of April 2026.

My initial evaluation in December 2025 with them was difficult, as my blood levels and general condition were not yet where they needed to be. However, in the interim, my kidney levels have improved, and my heart procedures have been successful.

During this most recent visit, I underwent several tests, including a pulmonary PFT, an Echocardiogram of my heart,, and a Bone Marrow Biopsy. On that Thursday, I met with Dr. "S", who informed us that my results look good and I now qualify for a stem cell transplant. This is the news we were hoping for, and we left the appointment feeling very encouraged.

The team is now beginning the search for a donor. I expect to be in a holding pattern for the next six weeks or so while they work to locate a match.

Fix the heart valves first...

 In March 2026, I had a stint in the hospital. I had previously been diagnosed with severe mitral and tricuspid regurgitation. Basically i had a couple of heart valves leaking. I had been talking to the Structural Heart Team at Norfolk General. They had informed me they had a new procedure which actually place what are little clips at the valve site that help with the leaking. Its called MitraClip and TriClip. They believed It would be beneficial to me to have it done.

 I went into the hospital for a right heart cath. They did the procedure. My pressures were high so they decided to check me into the hospital and work to get the fluid off of me. They put me on IV Diuretics and I lost almost 20 pounds of fluid. 

The Structural hear doctors then did the procedure. It was a success. They were able to reduce my MR from Moderately-Severe to Mild. Basically, they got all the blood to flow more efficiently through my heart going in the right direction. 

When I got out of the hospital I felt much better. With the heart pumping better and the fluid reduction I was able to move much better.

About the Header Picture...

 I was recently reflecting on a family trip we took to Hawaii in the late 70s. At the time, my father worked for a company that represented manufacturers to military commissaries and exchanges. Since they maintained warehouses in Alaska and Hawaii, they held their sales meeting there and we were able to join him.

My parents were avid golfers back then, and I have fond memories of us playing a round together overlooking Pearl Harbor.

 

We also visited the Pearl Harbor National Memorial. My father, who served in the Army, was deeply moved by the experience, as were we all.  

The header photo is a picture of me from years ago during our trip around Oahu. We had stopped at the famous North Shore and spent the afternoon watching the surfers. It was a wonderful day and remains a very fond memory for me.

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First Blog Post

 Welcome to my first blog post. Over the years, I have generally avoided posting online and have never had a Facebook page or other social media presence.

The purpose of this blog is to provide a centralized place to keep those who are interested updated on my current medical condition. I hope this platform makes it easier for Susan and me to share news, rather than managing multiple text threads to keep everyone up to date.

Thank you for your support.