Ruth Cuadra's Personal Profile
Recovery: November-December, 1998
Ruth Cuadra decorating the City of Hope float for the Year 2000 Rose Parade
Duarte, CA, December, 1999
After my bone marrow transplant I was in semi-quarantine at home, following prescribed rules for avoiding infection, including a low-bacteria ("neutropenic") diet and having our dog cared for by friends. We warned friends not to send me any flowers, plants, stuffed animals, or food. As at the hospital everything around me had to be as sterile as possible. These restrictions applied until Day +100, because the first 100 days are the most critical following a bone marrow transplant.
My blood counts continued to climb, though somewhat erratically, until I approached Day +70. Then, my WBC dropped from 7.5 to 3.4 and my platelets from 44 to 19, and my HGB kept sliding down as well. I got a red blood transfusion on Day +69 and platelets on Day +71, the first since being released from the hospital. Going 50 days without transfusions was a pretty good feat since they told me to expect them more often.
I've heard a number of patients report drops in blood counts around Days 65-70, but my doctor didn't consider the drops normal. A bone marrow biopsy showed that I was producing blood cell precursors but that many of the resulting blood cells were being destroyed once they reached my bloodstream. The primary suspect was cyclosporine, which I had to continue taking to ward off GVHD (graft versus host disease). GVHD is the condition that results when transplanted bone marrow reacts to the rest of the body, which it sees as foreign tissue. Mysteriously, my counts recovered on their own over the next few weeks. There never was a good explanation for the dip.
Recovery: January-March, 1999
The last couple of weeks of restricted living were hard because I was feeling pretty well and I was anxious to see my nieces and nephew and get out into the world a little bit. But I stuck by the rules (as if Neil would let me do otherwise!) until after my checkup on Day +100, January 14, 1999. At that visit, my blood counts were excellent (the best they'd been since before the transplant) so there was no more holding me back. There were still plenty of minor problems (achy legs at night, watery eyes, puffy face, and feeling cold and tired) but no major problems.
I felt very fortunate to have found a donor, made it through the transplant, and have had so few problems afterwards.
On the night of the 100th day, I had my first lettuce salad, prepared at home by Neil with careful attention to cleaning the vegetables first. Salad is often the most craved delicacy of people who've been on the low-bacteria diet and I was no exception. Second on the agenda was to retrieve our dog; the kids were especially glad to have him home.
After Day +100 I switched to weekly doctor visits (from twice weekly). I had my Hickman catheter removed with no problems on Day +114 and had a bone density scan as part of a study on the effects of total body irradiation on bone density. Counts were WBC 6.7, HGB 9.8, platelets 52, with no transfusions. Despite these good counts, life was not quite normal yet. An hour or two out in the world tired me, but my stamina was gradually improving.
Overall, I continued to make good progress. I needed a whole blood transfusion on February 18, when my hemoglobin dropped below 8.0, but I haven't needed another since — maybe I never will! For the record, I received these transfusions:
Oct 96-Apr 97
Oct 98-Nov 98
Dec 98-Feb 99
My white count fluctuated during February and March, and my hemoglobin hovered just under 10.0. Both counts were routinely in the low part of the normal range, but my platelets marched steadily upward, culminating in our big cheer when I passed the 100 mark on March 11, shortly after Day +150. After 29 months getting blood reports with 2-digit platelets, this goal had seemed unattainable. But by the end of March, my platelets had jumped to 182, right into the normal range! The doctor attributed the platelet increase to a decrease in my cyclosporine dosage. I attributed it to the glory of my donor.
I've always had a full head of thick hair. After my chemo (just before my transplant), my hair stayed around longer than the nurses told me it would. Then much of it fell out, but I never lost it all. I wore hats and scarves to keep my head warm, but by 6 months post-transplant I had enough hair to need it cut, and I stopped needing head coverings soon after that. My hair came back curlier and a little grayer than it had been, but oh, well...
Recovery: April-May, 1999
My streak of good luck apparently ran out in April. An endocrinologist I had been seeing as part of my regular treatment warned me that the bones of transplant patients can be brittle due to radiation and steroids. I found out the hard way that this was true when I injured my back in a fall on Easter Sunday (Day +180). The pain was incredible and caused me to faint as the paramedics were trying to get me up. I had to be helped down the stairs and lifted into an ambulance. Then it was off to the hospital for a 3-day stay.
X-rays revealed a compression fracture of the fifth lumbar vertebra. A specialist told me that it would hurt for the first 3 weeks (this was correct; I had to take daily pain medication) and that it would take about 3 months to heal by itself. However, three months for overall recovery is for an average person. I took longer to heal because of my weakened recuperative powers. At first, after the break, little tasks like getting out of bed and brushing teeth were the hardest daily activities — leaning over the sink to rinse was exactly the worst position for me! If I dropped something on the floor, I'd have to let it stay there until someone else bent down to pick it up for me.
And that wasn't all. Elevated liver enzymes on my liver tests in late April, and the appearance of white spots on my tongue and bumps around the inside of my mouth, plus a loss of appetite, suggested the possibility that I was developing GVHD. However, the same symptoms could indicate a viral infection instead.
In case the problems were "only" viral, I was given the anti-viral drug acyclovir. Unfortunately, we discovered that I am allergic to oral acyclovir, even though I tolerated it just fine intravenously during the transplant. After taking 2 oral doses, I got quite sick. Even with the night that I broke my back fresh in my mind, I would say that this was the worst night of my life. It was definitely the lowest point of my recovery since the end of the transplant. I had to be readmitted to the City of Hope for three days of intravenous acyclovir.
GVHD can develop anywhere in the body (including the skin) so transplant doctors are always on the lookout for signs of trouble and ready with diagnostic tests. Over the next weeks, my tests ruled out hepatitis, herpes, CMV (a lung infection), and other conditions. Finally, on May 12, I had to endure a double endoscopy so the gastroenterologist could inspect my esophagus and other organs and could biopsy my stomach, intestine, and colon. He confirmed that I had mild chronic GVHD of the digestive system: tongue, mouth, throat, stomach, intestines, and colon.
When transplant patients get GVHD, the doctors do a balancing act of nurturing the marrow while suppressing its effects on the body's organs. This meant increasing my immunosuppressants and steroids, which we had previously been tapering off. As expected, the increased dosages halted the progress of my platelet count. From the platelet high of 222 in April I dropped back below 200, but still not in the danger zone.
Although I wasn't glad to develop GVHD, I know that I was lucky to have gone 7 months before it appeared. These 7 months let me build up strength and blood counts, so I was in a much better position to battle GVHD than I would have been right after the transplant.
Recovery: June-September, 1999
By the middle of June, we seemed to be getting the upper hand on the GVHD. The strategy was to switch my main medications, from cyclosporine to CellCept and Prograf (also known as FK506). My gut improved rapidly. My mouth took longer but, with the help of a topical anesthetic, I was able to eat most meals comfortably.
If there was a silver lining to my GVHD, it's that my loss of appetite helped me lose 22 of the 30 pounds that I gained from being on steroids. It was a fairly painless way to lose the extra weight, but I don't recommend it as a quick diet for my friends! The doctors didn't worry about how little or how much I ate as long as I continued to drink at least 2 liters of liquids a day to keep my liver and kidneys flushed.
My liver enzymes, which were way out of the normal range, improved too but required still more medication. The doctor had to raise, lower, and substitute my medications to keep the proper balance of chemicals in my body.
In August, we again tried to taper off the major medications. I could now eat just about anything I wanted except for high-risk items like shellfish and sushi. Even 10 months after the transplant, it was still a treat to eat fresh fruits and veggies after doing without them for over 3 months. I still had handfuls of pills to take daily.
For the record, here's what I was taking as of August:
Needless to say, we make a lot of trips to the pharmacy!
After Day +100, our two teenage boys required more and more of our attention. The stress of having their mother so sick, and both parents gone for two months for the transplant (Grandma stayed with them), had a strong effect on them. They had an increasingly hard time keeping their grades up and coping with the day-to-day ups and downs of teenage life. Talking to counselors, we learned that it was not surprising for the boys to continue to feel anxious, even though I was now home and doing well. Advice from experts and plenty of time spent talking to and just being with the boys helped us to help them. I've heard other patients describe the delayed reaction of family members to a major medical problem as a "second shock wave," as if everyone was holding their breath during the critical period, and then reacting later when they could finally breathe again.
Neil took copious notes before, during, and after the transplant, and I kept all of my email. I began rereading notes and email from the transplant weeks. I remembered some of it only hazily, and some of it not at all. It was therapeutic for me to go over my own history.
I finally returned to my job (editing software documentation) about 8 months post-transplant. I could not work a full day or handle the stresses of hectic office life but I was able to work my way up to 25 hours a week from home.
Recovery: October, 1999
Reaching Day +365 was cause for celebration. Neil organized a birthday party for me to recognize my "new birthday," or "re-birthday" as some call it. We celebrated with about 70 friends and family at our house and I saw friends and neighbors whom I hadn't seen for over a year. Some had kept up-to-date on my condition via email, but seeing everyone in person was a real thrill. I suspect that many people had been afraid to visit me or even call me, not knowing how safe or intrusive it would be, and the party got everyone over that hump.
At my 1-year checkup, I registered the highest blood counts in the 3.5 year history of my illness: hemoglobin of 11.7! I had my one-year bone marrow biopsy, which showed no sign of disease. The subject on my mind, however, wasn't as much my condition as my donor. Unrelated donors and their recipients are not allowed to know each other's identities for a year after transplant, if both agree to exchange this information. I was thrilled when I got word that my donor agreed!
Next: Meeting My Donor