Acute Graft versus Host Disease

September 2012 thru November 2012

Tummy Pain

On September 30, my stomach started hurting badly.

The pain came in waves. I had constant diarrhea and could barely eat. Even touching my stomach hurt.

I vomited several times.

I called IPOP and explained what was happening. They paged a doctor, who called me back and asked more questions. After hearing my symptoms, he told me to come back to the hospital.

So I packed again.

I felt bad.

Another admission meant more driving for Jolynn. It was about an hour and a half each way between home and Johns Hopkins. She had already been going back and forth for months since May.

She was exhausted.

As soon as I arrived, I asked for morphine.

It helped.

I asked for it every four hours.

The pain was that bad.

Sigmoidoscopy

Because my platelet counts were still low, they performed a sigmoidoscopy instead of a full colonoscopy the next day.

They took four tissue samples from different areas inside my gut to determine whether the pain was caused by graft-versus-host disease or by medications.

The results would take several days.

So I waited.

I continued taking morphine every four hours.

Eating was difficult. My stomach hurt constantly, and my taste buds were still off. I lost more weight.

I felt frustrated.

Even while admitted, I tried to walk a little each day.

Half a mile to a mile at most.

That was all I could manage.

Tacrolimus

Four days later, the biopsy results confirmed it was graft-versus-host disease.

The nurse started my first dose of IV Tacrolimus.

About two hours later, the pain stopped.

Just like that.

Oh boy.

I felt so much better.

Along with Tacrolimus, I also began taking steroids. These medications suppress the immune system to control GVHD.

The relief was immediate, but I knew the trade-off.

Severe Acute GVHD

Dr. Matsui reported to Dr. Schweizer that I was not doing well.

Dr. Schweizer came up to my room to check on me.

When he walked in, I was sitting up in bed and smiling.

He looked slightly puzzled.

I told him the first dose of Tacrolimus had helped.

That was when I learned they were calling it severe acute graft-versus-host disease.

Severe?

I did not feel like it was severe.

But that was the medical classification.

I suppose I was fortunate it affected my gut and not my liver.

Treatment

I was started on Tacrolimus and Prednisone to suppress my immune system.

Recently, I had been excited to see my white blood cell count return to normal ranges. Now, because of these medications, those numbers meant very little.

Even if the count looked normal, my immune system was being suppressed.

I was still vulnerable.

The plan was to continue this treatment until at least mid-December. After that, the doctors would decide whether to taper the medications.

Dr. Schweizer mentioned that I would likely remain on Tacrolimus for a long time.

The medications affected more than just my immune system.

I became grumpy. Moody. Short-tempered.

I would snap at people over small things.

I told my doctor about it. He explained that mood changes were common side effects of these medications, especially the steroids.

It was hard.

Not just for me, but for my family.

I do not enjoy taking medications.

But for now, they were what kept me stable.

Back as Inpatient-Outpatient

I was discharged from the hospital on October 6 and returned to IPOP the next day.

I felt much better, but I knew I could not take anything for granted while on immunosuppressive medications.

Going back and forth to Johns Hopkins felt like a full-time job.

An hour and a half drive one way.

Temperature and blood pressure checks.

Blood drawn for CBC tests.

Medication review and adjustments.

Physical examination.

IV fluids, medications, or transfusions if needed.

Report how I felt since the last visit.

Then drive home.

For the first few days, I went daily.

After that, if everything looked stable, I went three to four times a week.

Always Hungry

Prednisone made me constantly hungry.

I ate a lot.

Cheeseburgers. Milkshakes. Onion rings. French fries.

Candy. Donuts. Ice cream.

And still, my weight stayed around 160 pounds. Sometimes it dropped even more.

If I ate slightly less for a day, I could lose two to four pounds overnight.

That was not good.

Prednisone also pushed my glucose levels high. Sometimes over 200. A few times over 300.

My doctor said I did not need insulin yet because my morning levels dropped back under 200.

Still, I knew I had to be careful.

They would eventually taper some of the medications, and I would need to adjust what I ate.

I probably ate more donuts that summer and fall than in all my previous years combined.

Vanilla kreme were my favorite.

Yum.

Bleeding from PICC

During the second weekend of October, I felt a little better.

So I did things.

I added a drawer to our shelving system for the printer. I reorganized books. I moved heavier items around.

On Monday, I noticed blood coming from my PICC line.

I did not think much of it. I planned to wait until my next IPOP visit on Tuesday.

But it kept bleeding.

We called IPOP. They told us to come in.

So we drove an hour and a half.

They fixed it in about fifteen minutes.

As soon as I walked out, it started bleeding again.

I ignored it and drove home.

The next day, we drove back again to have it fixed.

They told me to take it easy.

I have a hard time taking it easy.

On good days, I want to do something.

All summer and fall, the only consistent activity I could manage was walking.

I was ready to get rid of the PICC line as soon as possible.

3-Month Post-Transplant Biopsy

Dr. Hostovich, who had been caring for me in IPOP, told me she would perform my next bone marrow biopsy.

We had talked about my anxiety and previous painful experiences. She reassured me that I would receive medications to relax and be in a twilight state.

On October 16, I came in for biopsy number nine.

Nine.

I was nervous, but not as much as before.

Then she discovered I had eaten a large breakfast within eight hours of the procedure.

Because of that, she could not safely give me certain sedation medications.

She apologized and suggested rescheduling.

“No,” I said. “We are doing it today.”

I did not want to go through the waiting again.

The only option was Ativan.

I reminded her that Ativan had not worked well for me before. I did not care. I just wanted to get it over with.

I took one dose.

Waited almost two hours.

Took another dose.

Thirty minutes later, she and a technician came in.

This time, I felt different.

Relaxed.

I felt the numbing injections. I felt her draw the marrow two or three times. Brief pressure. Mild pain.

Then it was done.

She obtained all the samples, including a core of bone.

It was the best biopsy experience I had.

I thanked her and told her I wanted her to do the next one.

She smiled and said, “Call me, and we will see.”

The next one was already scheduled for February 18.

Cytomegalovirus

At my next IPOP visit on October 18, I was told I tested positive for Cytomegalovirus, CMV.

Because my immune system was suppressed, this was not good.

I learned that 50 to 80 percent of adults in the United States have been infected with CMV at some point. Most people never know it and never require treatment.

But in my case, treatment was necessary.

I was started on Valcyte, 900 mg twice a day.

The doctor warned me that Valcyte could lower my blood counts again.

I had been waiting weeks to see my numbers return to normal.

And now they would likely drop again.

Complete Remission

Two weeks later, the formal results from my biopsy came back.

Everything looked good.

I was in complete remission.

Again.

They also confirmed that my blood DNA was now 100 percent donor.

They could not detect any of my original cells in the biopsy sample.

That was remarkable.

My next bone marrow biopsy was scheduled for February 18, six months after the transplant.

Discharge from IPOP Class

Before being discharged from IPOP, I was required to attend a discharge class.

I brought Jolynn and my mom with me since they were my caregivers.

Fortunately, it was a one-on-one session instead of a group class. A nurse decided that would be easier.

We reviewed what I should and should not do.

Most of it I already knew. During consolidation chemotherapy, I had been so bored that I read their entire booklet ahead of time.

One thing I did not know was that I could not get sunburned for the rest of my life.

Sunburn can trigger graft-versus-host disease.

I was told to wear sunscreen whenever I went outside and avoid direct sun between 10 a.m. and 3 p.m. whenever possible.

Even with jeans on, I was supposed to apply sunscreen to my legs.

Hats. UV-protective clothing. Be cautious.

It was a new way of living.

Discharged from IPOP

I was officially discharged from IPOP on November 4.

I was now considered an outpatient, which meant fewer trips to Johns Hopkins.

The goal was once a week, as long as everything remained stable.

On November 7, I went in for labs and met with my primary doctor, Dr. Schweizer. On November 9, I met with my GVHD specialist, Dr. Meade.

Both visits were short.

I was doing well.

No major problems.

That felt good.

CMV Negative

At my visit on November 14, I was told my CMV test had come back negative.

That was good news.

Dr. Schweizer reduced my Valcyte to 900 mg once a day but wanted me to continue it for a while longer. He explained that CMV can be difficult to detect and preferred to be cautious.

Physically, I felt weak.

Aside from walking, I had not exercised at all. My legs felt like rubber. If I tried to run, I could not control them.

Dr. Schweizer explained that Valcyte can contribute to muscle weakness.

I was looking forward to stopping Valcyte and having the PICC line removed so I could begin rebuilding my strength again.

I felt weaker than I had since middle school.

One Week Later

One full week without visiting Johns Hopkins Hospital.

That was the longest stretch since May.

On November 21, I returned for labs, IV fluids, and a doctor visit.

The doctor said I was doing very well.

I received a unit of magnesium. That was about it.

My blood counts were still suppressed from the medications, but he felt I would be fine until Monday for any additional transfusions if needed.

November 21 marked one year since I was diagnosed with MDS.

One year.

A lot had happened in twelve months.