(This is the second in a three part series that chronicles the experience of donating bone marrow. Part 1 can be read here. Part 3 can be read here. Part 4 - The Follow-up.)
After the phone call!
Well, to be honest, my journey with the Unrelated Bone Marrow Donor Registry (UBMDR) [Note: The UBMDR has been renamed One Match.]actually began with a letter. About 13 years after I joined the registry, I came home to find a registered letter from the RCMP. The letter stated that the Canadian Blood Services (CBS) had contacted them because they had found a match and their contact information for me was no longer valid and would I contact the CBS if I wished to proceed.
At that time, the workup proceeded but the patient did not become well enough to attempt a transplant. The UBMDR, once you have a match and are willing to proceed, do a full medical workup. But under their guiding policies and regulations, they can only keep you on hold, and off the registry, for nine months. Once that time had passed, they contacted me to let me know that I was now back on the registry. It was a very emotional 9 months, waiting to see when the transplant would happen then hoping for the call each week, and being asked to hold for 3 months three times.
It was very disappointing and so very hard to think I had the right blood characteristics to help this person, but for medical reasons their doctors decided not to attempt a transplant at that time.
Day1 - The Phone Rings
Then nearly two years later, the phone rang. It was CBS and I have had another match and was I still interested in donating bone marrow. Of course I was willing to try to help save a life. What greater privilege could we really have in life? Yet there was also the fear that something would again prevent it from happening.
Day 3 - Intake Interview
The major part of this first phone interview was a 10-page health questionnaire. The information gathered was similar to the questionnaire online that you do now to join the registry. This is just to verify that you are still healthy and do not contradict any of the regulations that would prohibit you from donating. I actually had the same intake nurse do the questionnaire this time as two years earlier. We went over the different procedures at the two collection centers near to me, and they asked if I had a preference. I was willing to go to whichever one could help the patient sooner. During this first phone interview, the donor coordinator from CBS also explained to me about the newer procedure to collect and to transplant stem cells - peripheral blood stem cells (PBSC). In this new procedure, a donor is given injections of granulocyte colony stimulating factor (G-CSF), which dramatically increases the number of stem cells available for transplant. Would I be willing to donate either bone marrow or PBSC, depending on the request from the recipient's doctors? Then we set up the appointments to take place to move the donation process ahead.
It was weird thinking about donating bone marrow through the blood, yet this procedure seemed much less invasive and it was still an opportunity to help someone.
Day 8 - Further Phone Interview
This phone call was much longer, and involved the decision to go ahead barring positive blood tests against me. We discussed which collection centre, the effects and process of taking G-CSF and how it would be administered. We set up a phone time for me and my escort, Grant Carioni. (Grant was my best man when I got married, and he is one of my daughter's godparents. He is one of my best friends.) Grant would book time off work and come, and even if the company would not let him take it, he would take it without pay. Without Grant's assistance, this would have been much harder on me and my family.
Day 16 - Phone Information Session With Me and Escort
This was again a long phone call; it was a 3-way call with Grant, the CBS donor coordinator and myself. We went through what the days of the donation would be like, exactly what would happen at the hospital, the possible side effects, and Grant's responsibilities as escort to look after me after the donation.
Day 17 - Travel to CBS Collection Centre and Bone Marrow Collection Center
This was a long day in the preparation for the donation. I went first thing in the morning to the collecting hospital for blood work; then we had a meeting with the nurse coordinator for collections at this hospital.
After that there was a meeting with a doctor who coordinates the collections. He had a long health questionnaire that was similar to the one done by the CBS on day 3, though a few of the questions were worded differently. The doctor told me that it was the hospital policy that they had to do the questionnaire orally and record the answers personally. Next he did a complete physical examine. By that time in his computer system, he had all of the blood work results. He went over all of them with me; two were a little out of the ideal range and he said I should mention them to my family physician next time I saw him, but nothing that would prohibit the donation. Next he thanked me. He said the recipient was not one of their patients, but that having patients who were waiting for matches, on behalf of the staff he wanted to thank me for my willingness to donate.
Finally I met with the nurse who would perform the actual procedure of collecting the PBSC's. She showed me the room in which the procedure would take place, went over the whole procedure and what to expect, and how to prepare. Then she helped me with directions to the local CBS where I had another appointment for more blood work.
At the CBS, they collected about 12 vials of blood that would be used for disease testing both at CBS, per their policy, and vials for the receiving hospital to perform their own tests much like the collection hospital had earlier in the day. All of this is to verify that it will be a safe donation for the recipient. Both hospitals and the CBS all test the blood for health and diseases or illnesses, just to make sure this will be best for the recipient and for me the donor.
It was becoming so much more real; the donation was now just weeks away. Still there was the nagging feeling that, again, things would not happen. Or that something in my health would hold it back. Last time I only got as far as the blood work.
Day 28 - CBS Collection Centre
Made one more trip to the CBS for more blood work for them. Today is also the point of no return; at this point, the patient is far enough into their chemotherapy and/or radiation treatments to kill off their own bone marrow, that if I back out now, I will be ruining what health they have. It is also the point of no return for the patient; now they too have to go through with it. I find myself wondering what they are like, how old they are, what are their dreams and passions? Will it work? I also find myself praying for their health and for their friends and families to be strong and supportive.
Day 31 - Travel to Bone Marrow Collection Centre
It is time to begin the injections of the G-CSF to help my body produce extra peripheral stem cells. The injections must be given within one hour of the initial injection on each of the next five days. The first injection brings some nausea and the expected bone aches.
Day 32-34 - Injections
The Victorian Order of Nurses (VON) came to my house to administer the injections of the G-CSF. That is based on this collection center's policy. With the other local center, you are allowed to administer this yourself, and not have to rely on the VON's timeliness. The G-CFS has a number of possible side effects; with the dosages given for this purpose, the two most common are bone pain, and nausea, and I experienced both. The nausea more so the first day, but the bone pain and soreness got progressively worse over the 4 days. It was uncomfortable to get to sleep and the pain would migrate around the body as the G-CFS worked through the system. I personally found the pain was worse at sites of previous injuries - where I had old breaks from childhood, rugby and hockey, and also from the location of my shoulder surgery where they shaved off part of the acromion. Thinking about the recipient, and the treatments they were going through, and then the hope the transplant can offer, made the discomfort more than worth it.
Day 34 Travel to Collection City
Grant and I travelled to the collection center; we checked into the hotel, booked a 5:30 am wakeup call, and went to a nice pub for supper. Tomorrow the donation begins. I was excited, nervous, anxious. I found myself praying again and again for the recipient and success of the procedure. It had been difficult, as this day has approached, to think about anything else. I often thought of my own daughter and if she were ill, and how someone could help her by being uncomfortable for a few days.
Day 35 - Begin Collection
The day began with a 5:30 am wakeup call - quick showers, then we headed to the hospital. I had a knapsack packed with books, season one of Battle Star Galactica, and drinks. Grant packed some work and a book to read. Made a quick stop for a drive-thru breakfast and then it was on to the hospital. Grant and I had to be at the Hospital at 7am to begin preparations for the day's donations…but you will read more about that in part 3…
(Part 1 Can be read here. Continued in part 3.)
(First Published in Imprint 2007-06-20 as 'Saving a life: getting the callback.')
Note: In the United States of America the National Marrow Donor Program can be contacted at 612-627-5802 or on the web at www.NMDP.org for those who have asked for the information.
[Note: The UBMDR has been renamed One Match.]
Part 1 - There's more than blood in you to give
Part 2 - The Callback
Part 3- The Donation
Part 4- The Followup