Menu Close

Heart Problems and Bone Marrow Transplants: My Story – Surviving The Bubble

Heart Problems and Bone Marrow Transplants

Newspaper ad run in my local paper in Henderson, Nevada to help with medical bills for my family.  The title was Car Was Donations Benefit Leukemia Victim

From the very beginning of this whole process, we were told that the only cure for AML was a bone marrow transplant.  The Laminar “bubble room” was necessary in order to treat me with the most aggressive chemotherapy and get my body ready for the transplant.  The purpose of the transplant is to remove all the unhealthy bone marrow and replace it with healthy marrow from a donor. The easiest way to do this is to try and get my body in remission so that I had no leukemia cells left in my body. We had accomplished that.

After my week of “freedom” and Disneyland, it was time to go back to the hospital and prepare for the surgery.  My 4 year old brother was going to be my donor.  The transplant was an aggressive surgery, but one that required sedation. I’m not sure how you have that discussion with a 4 year old child, but at the time they were looking at it as the only way to save my life.  It would be a painful surgery and he would be in the hospital for a couple days recuperating.  We were very blessed to have a sibling that was a perfect match.  Many people go on the waiting list and wait a very long time to find a donor, if they are even lucky enough to find one.  If a family member was not a match in the 1980s, the chances of finding a match on the waiting list were not good.

The doctors had to run several more tests to make sure I was ready for the transplant.  Once the tests were done, I would be prepared to move into another “bubble room” so that I could be carefully monitored after the transplant.  They were taking all precautions necessary to make sure the transplant worked and that my body accepted the new marrow. The doctors explained to my parents that it would be another two to four months in the hospital before I was able to go home.  They had to find temporary housing near the hospital to stay while I was recovering.I remember the day we went to the transplant area and were given a room.

I remember the day we were given the new room.  The transplant was scheduled for that same week and we were just waiting to get more details.  We waited in the room for most of the day while the doctors went over my tests thoroughly. By the time they finally came in to talk to us, it wasn’t good news.

I had been given a chemotherapy drug called Daunomycin to treat my Leukemia. It was a very aggressive drug that was given intravenously and had several side effects.  One of the worst side effects was heart problems. The week before my transplant was scheduled, the doctors had stopped giving me this drug due to a heart abnormality. When it was time for the transplant, the doctors realized the abnormality was a Left Ventricular Hypertrophy.  The left chamber of my heart was enlarged and not pumping correctly.  The doctors said that if we had gone through with the transplant, my heart would have stopped on the table.  The transplant was postponed and I was sent home on April 19th. 

Being sent home was definitely bittersweet.  I was excited to finally go back to Las Vegas and not be living in a hospital. My parents were most likely terrified, because we had been told over and over that the only cure was a transplant. However, knowing that my heart problem was caught in time was a tender mercy from the Lord and we were all very grateful!

My heart was monitored very closely over the next few months.  The doctors had hoped that stopping the Daunomycin would help the heart recover on its own.  In August, an echocardiogram test revealed that there was 31% damage in my heart, so the doctors scheduled a heart muscle biopsy, or myocardial biopsy for September.

We arrived at CHLA for the biopsy in the beginning of September. 

This procedure was another moment during that year that is etched in my memory forever.  I had no idea what to expect and was surprised by the amount of doctors and nurses in the room. As I was wheeled into the operating room, I was laid on top of a very small, t-shaped, blue table.  The doctors disrobed me and I lay naked on top of the table.  After the lack of privacy in the “bubble room” I was used to doctors seeing me so vulnerable.  However, this was different.

After I was disrobed, I was told to stretch out my arms on either side of me.  I felt like I was laying on a cross and was terrified.  The doctors then tightly secured my arms to the table with medical tape and wrapped my wrists several times around the table. There were several risks with this type of procedure if there was any movement, so this was a necessary precaution.  Then, when I thought it couldn’t get worse, they secured my head down as well.  

They laid a small, blue blanket over my chest in case I got cold, but left the rest of me fully exposed.  I was told to hold as still as possible and that it would probably take about an hour or so.  I had to be awake for this procedure to be monitored, but wished desperately that I could just go to sleep. 

The doctor washed the very top of my thigh with Betadine and used a needle to numb the area close to my groin.  He then made a small incision in my thigh and inserted a biopsy catheter.  The catheter had a camera on it and there was a monitor above me that they used to follow the catheter as they directed it to my heart.  At the end of the catheter was a needle that would be used to cut a tiny piece of my heart to be biopsied.

When the catheter was running through my body, I could feel it moving inside.   I watched the monitor carefully and could see the catheter moving through my body.   As soon as the catheter reached my heart, the nurses told me that they had to take an X-ray and that I would probably get sick.  They released the strap over my forehead and allowed me to vomit several times into a bucket they held next to me.  As soon as the vomitting stopped, the strap was replaced and the biopsy of my left ventricle was taken. There was a sharp pain in my chest and I cried for them to stop. The procedure lasted almost exactly and hour and a half.

When they wheeled me to my room to see my mom, they had wrapped my thigh from the top to below my knee.  The procedure required them to use my femoral artery and they needed to keep me very still for hours afterward.  Once the wrap was removed, I expected to see a very large incision.  Instead, there was a tiny scar no bigger than half an inch on my thigh.  I couldn’t believe that such a small scar came from such a horrible experience. 

I had several tests and echocardiograms on my heart over the next year to monitor the recovery. The doctors told us that my heart hypertrophy completely reversed itself and went back to 100% normal function.  Yet another miracle from Above. 

About a year after my initial diagnosis, my pediatric oncologist discussed harvesting  my own marrow in case a transplant would be needed in the future. While I was in remission, they could remove enough marrow from my body that was clean and Leukemia free and freeze it.  That way, if I relapsed with the AML, I could get a bone marrow transplant with my own marrow and not have to use a donor at all.  We never did this and I ended up never having a bone marrow transplant at all.  Miracle number 5……I kept track. 

To this day, I still have that tiny scar  from the biopsy on my thigh.  I sometimes catch myself looking at it in disbelief that so much was accomplished in such a small area.  I never had any side effects from the hypertrophy and have tested my heart almost every year since.  The only reminder I have of the procedure is a shooting pain I get at the sight of the scar on occasion.  There is no warning or reasoning behind it, but every week or so, I will have to stop what I’m doing for a minute or two and put pressure on the scar to make the pain go away.  Apparently certain nerves in the body have very long-term memory.