Ruth Cuadra's Personal Profile
Bone Marrow Transplant
Ruth Cuadra showing off her new bone marrow minutes before her transplant
City of Hope, Duarte, CA, October 6, 1998
My matched unrelated donor (MUD) bone marrow transplant took place at the City of Hope on October 6, 1998. This was Day +0, and my progress was measured relative to this date.
Transplant Preparation. A week before checking into the City of Hope, I had surgery to have a right atrial catheter installed. It's called a Hickman catheter after the doctor who developed it. The catheter enabled me to receive drugs and give blood samples through the same opening. I had the catheter for the next 3 months.
My husband Neil and I checked in on Day -8 (i.e., 8 days before the transplant) and stayed in Hope Village, a cluster of on-grounds apartments, for the first 6 days while I had my radiation treatments. Although nurses came by twice a day to check on me and collect blood samples, and I was driven in a golf cart to and from each appointment, Neil was given a lot of nursing duties himself. He learned to operate IV pumps, keep charts, prep syringes, and give me my pills and IV medications on schedule.
Over the next 4 days, I received 11 total body irradiation (TBI) treatments, each 10 minutes long. I received a total amount of radiation equivalent to over 500 standard X-rays. The basic idea is to kill the "bad" bone marrow so it can be replaced. I stood up for the treatments, held in a harness, with custom-made metal plates called "lung blocks" placed in front of me to shield my lungs from radiation. I also got additional "booster" doses of focused radiation to the areas behind my lungs. This procedure gives the required radiation dose to all areas of the spine, while lessening the danger to the lungs.
On Day -3, I checked into the City of Hope BMT Unit and Neil checked into a local motel, where he stayed each night from then on. He spent all day every day at my side in the hospital. This was the first of two days of chemotherapy with cytoxan (cyclophosphamide). Some people breeze through radiation and then get quite sick from chemo. I was the opposite, sick to my stomach during almost every TBI treatment, but fine during chemo.
Day -1 was a day of rest before the transplant the next day.
What the Transplant is Like.The actual transplant is not an operation, but a transfusion just like getting whole blood. The bags of marrow from my donor (see photo above) were put on an IV pole and fed in through my catheter. I slept through most of it because of the Benedryl pre-med given to prevent or lessen allergic reactions to the marrow.
What it's Like for the Donor. The procedure for my donor was harder. The morning of October 6, she was given general anesthesia and the marrow was extracted from her pelvis, as in a bone marrow biopsy, but from multiple sites and drawing more fluid. Although she was able to leave the hospital the same day, she felt pain afterwards and was sore for many days. Unlike other kinds of organ donation, bone marrow donation does not cause the donor to lose anything from his or her own body. The donor's bone marrow immediately starts regenerating. His or her own immune system is not endangered and the only dangers are the risks that any surgery with anesthetia has. These days many donors are donating stem cells instead of bone marrow, and that's an easier process for the donor.
Anonymity. My donor's bone marrow was carried by courier from my donor's city to Los Angeles by airplane. Because the marrow was not scheduled to arrive at the City of Hope until 6pm, I was pretty sure it was coming from the U.S. east coast. However, nobody was allowed to tell me any details about the donor and her location. All I was permitted to know was her age and that she was in the U.S., and I was able to exchange unsigned notes with her. She sent me a get well card. I sent her a thank you letter and a stuffed animal.
After the Transplant. In the days immediately following the transplant, my blood counts dropped as expected, with my white count going to flat 0. I was moved to an isolation room, because my body could no longer protect itself from infection until the new bone marrow engrafted and began producing new white cells. Isolation protocols differ from one hospital to the next. At the City of Hope, patients in isolation cannot leave the room and the doctors and nurses scrub and wear caps and gowns when entering the room. A 24-hour closed circuit TV camera let the nurses monitor me from their station. Neil and my occasional visitors could still come and go, but the same scrub-and-dress rule applied to them too.
After-effects — In the Hospital. This was the most uncomfortable period of my hospitalization. Every patient gets a different combination of symptoms, but the basics are mostly the same: mucositis (raw and sore gums, mouth, and throat, which make it very hard to swallow), nausea, vomiting, shivering, nosebleeds, nightmares, and you name it. The nurses gave me whatever meds could help me, including painkillers.
Mucositis was the worst symptom for me. My mouth and throat hurt all the time. By Day +13, I was no longer able to swallow my pills. Everything had to be switched to IV. They brought me a suction device like a dentist uses and attached it to the side of the bed. That let me vacuum my saliva anytime I wanted. Because I'm allergic to morphine, I was given hydromorphone, an artificial morphine also known as Dilaudid, for the mouth and throat pain. When the dose was high, it gave me hallucinations, so they had to experiment to find the right dose to get the "best" balance of symptoms.
Family Blood Drive. My brother started a blood and platelet drive among my family and friends. Altogether, 30 people donated blood or platelets directed to me. A few donated multiple times. When the donor was a match for me and the timing was right (platelets last only 5 days), I got those donations. The rest went to other patients who needed them.
Staying in Touch. One day during the third week I was able to sit at our laptop computer and read some of my own email. Just sitting up for 20 minutes was an exhausting experience, but it helped me a lot to "talk" to the family and friends to whom Neil sent regular "Ruth Reports" by email, and to read the postings on AA-MDS-TALK and BMT-Talk.
Recovery Begins. The doctors told me to expect white cell production starting on about Day +20. I was a bit early. On Day +17, I produced my first new white cells. Although a normal person's WBC is between 5 and 11 and mine measured only 0.3, it was a glorious improvement over zero because it meant that the marrow had found its way into my bones and that engraftment was taking place! Coincidentally, it was the second anniversary of my original diagnosis.
White Blood Counts Start to Climb. My development of white cells let me move out of isolation two days later. I was in my isolation room a total of 17 days. Although every BMT room is private, moving back to a regular room made me feel very vulnerable, after the cocoon of isolation. In any case, I was clearly past a critical hurdle, as my WBC climbed for 11 days in a row, reaching 4.8 on Day +29. On Day +28, I was allowed to leave the building and sit outside for a few minutes. RBC and platelets take longer to recover after a transplant. Mine were "low but tolerable."
Back to Food. The doctors told me that my next task was to try to eat and drink again. On the average at that time, patients started to eat at about Day +26. Eating was a chore, not a privilege, because everything tasted bitter and I had absolutely no appetite. But as my throat healed I had to re-train my digestive system. Due to nausea and mucositis I was unable to eat solid food for 28 days, from Day -7 through Day +20. Instead, I got total parenteral nutrition (TPN) and lipids through the IV. On Day +21, I started nibbling little bits of this and that at each mealtime. The first time I felt any hunger was Day +24.
Exercise. I started walking the halls pushing my IV pole, which is how you get your exercise in the hospital. City of Hope has photos of former transplant patients all over the walls, so at least there is something interesting to look at. And I could talk to the other patients who were out pushing their own IV poles.
Going Home. Altogether, I was in the hospital 44 days, from Day -8 to Day +36. At the time, this was a little better than average for City of Hope patients with an unrelated donor. Patients with a related donor usually went home in half the time. Getting to go home is based on blood counts, a lack of infections and other complications, and the ability to drink, eat a bit, and take oral medications.
Significant Events of My Bone Marrow Transplant
|-13||surgery to install Hickman catheter||3.5|
|-8||check into Hope village||4.0|
|-7||first total body irradiation treatment; last solid food||4.3|
|-4||last total body irradiation treatment||3.5|
|-3||check into the Bone Marrow Transplant unit; 1st day of cytoxan chemotherapy||1.6|
|-2||2nd day of cytoxan chemotherapy; 1st whole blood transfusion||1.8|
|0||bone marrow transplant; 1st platelet transfusion||0.4|
|+2||move into an isolation room||0.3|
|+3||white count drops to zero||0.0|
|+5||hair loss begins||0.0|
|+17||new white cells first detected||0.3|
|+19||move out of isolation back to a regular patient room||0.7|
|+21||first solid food||1.2|
|+29||white count passes 4.0||4.8|
|+31||bone marrow biopsy - no chromosomal abnormalities detected||7.0|
|+35||bronchoscopy - no CMV detected||5.7|
|+36||released to go home; home quarantine period begins||7.2|
|+69||bone marrow biopsy - no chromosomal abnormalities detected||4.3|
|+97||platelets reach 50||6.7|
|+100||home quarantine period ends||8.0|
|+104||bone marrow biopsy - no chromosomal abnormalities detected||6.8|
|+114||surgery to remove Hickman catheter||6.7|