All photos taken by Grant Carioni

Part 1: There's more than blood in you to give
First Published in Imprint 2007-06-15 and Steven's Blog Friday, June 15, 2007 as 'There's more than blood in you to give.

What would you do to have the chance to help save someone's life?

Many people have never heard of the Unrelated Bone Marrow Donor Registry (UBMDR). What is it, how does it work, and how do you get on it are all questions I have been answering a lot lately. In this first article I will try to answer these questions and some of the other questions that one might have around the process of finding a match on the UBMDR.

In Canada, the UBMDR is run by Canadian Blood Services (CBS), but it is also part of an international registry. Every year hundreds of Canadian patients are seeking a match on the UBMDR, which for many of these patients, is their only hope for recovery from illness. You might be able to help! What does it take for you to help? All it will take is a bit of your time, a simple blood test and a willingness to donate either bone marrow or peripheral blood stem cells. Currently there are about 220,000 Canadians who have made this commitment.

How does it work? Your blood, regardless of blood type, (A, B, AB, and O) has certain characteristics that they are looking to match. The characteristics are called Human Leukocyte Antigens (HLA) - they are DNA markers. These antigens are found on the surface of the white blood cells. Now some antigens are more common in specific ethnic groups so it is important to have as many people in the registry as possible. The registry is also eager to attract young donors because generally they are in good health, and are associated with better long-term survival rates for recipients. So after reading the information on the CBS website www.blood.ca and doing a questionnaire, you can do an online health survey and if all goes well, CBS will contact you to gather a sample of blood for your typing. If you are between the ages of 17 and 50, and in general good health, you can join the registry. Your blood has 12 of these DNA markers, and the initial testing will get your top 6 markers. After that, if you have a match with a recipient, further testing may be required to match the remaining 6 markers.

Currently there are over 10 million people on Donor Registries around the world. What are stem cells? For the purpose of the UBMDR, stem cells are not the controversial cells often in the media these days. They are immature cells that can become either red or white blood cells or platelets. Bone marrow is a rich source of stem cells but they can also be found in the peripheral blood. Bone marrow is the soft tissue found in the centre of your bones. Bone marrow produces stems cells, which develop into the three types of blood cells. When bone marrow becomes diseased, one of the options is to kill off the bone marrow of the recipient and replace it with the bone marrow of a donor. A newer procedure is 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.

Once you have joined the registry there is not a lot you have to do. There is only a 30% chance of finding a match in a family and it is even smaller from someone unrelated. That is one of the reasons it is so important to get the message out to as many people as possible and have the registry grow, so that as many patients as possible can be helped. Once you are on the registry you must also notify CBS of changes in your health status that would prohibit you from donating and also let the CBS know when you move.

Donors are matched through computer databases. When a transplant physician contacts CBS with a request for a volunteer donor, the database is searched and compared with those on the UBMDR and then through the other registries around the world. If a viable match is found, then it goes to the next step. First, they will confirm that you wish to proceed, then the next steps will begin.

Now onto the how. How are stem cells donated? If you are donating bone marrow, you will be admitted to the hospital and while under a general anesthesia, a needle will be inserted into your pelvic bones on both sides of your lower back. About 3-5% of your total bone marrow will be removed, which your body will replace in a few weeks. This procedure will take about 2 hours and the donor is usually discharged the same day. If PBSC donation is requested by the transplant doctor, the stem cells are collected through a process of apheresis, where blood is drawn from one part of your body and run through a centrifuge which separates the stem cells from the blood and the rest of the blood is returned through another needle.

What is it like? Donating bone marrow, has a few short-term side effects, which sometimes include fatigue and soreness. To donate stem cells, because of the G-CSF, a donor may experience mild bone pain, muscle pain, or flu-like symptoms, which usually dissipate within 24-48 hours of donating.

After the cells are extracted, they are transported by medical courier to the patient who may be anywhere in the world. The patient would have undergone intensive chemotherapy and/or radiation to eliminate all of his or her diseased cells. The harvested cells are then transfused to the recipient and if all goes well, they will start producing healthy blood cells after a few weeks.

These transplants are used to treat a variety of diseases, such as leukemia and other cancers. It replaces bone marrow destroyed by radiation or chemotherapy. In aplastic anemia, it replaces abnormal or absent bone marrow. For some immunodeficiency diseases, it gives a patient a brand new immune system. For some enzyme deficiencies, the transplant can help provide the missing enzymes or replaces defective ones. Yet even with all that, you are only providing the possibility - but that possibility is worth it.

A donation is, in some cases, the last chance to save someone's life. Many people out there need help and it costs you little in time and discomfort, so why would you not consider joining? For more information, check out the CBS website. I joined a number of years ago when a friend's sister was sick with leukemia. I went through the process of finding out about the registry and joined. Then one day the phone rang …

Part 2: The Callback
First Published in Imprint 2007-06-20 and Steven's Blog Friday, June 29, 2007 as 'Saving a life: getting the callback.'

Well, to be honest, my journey with the Unrelated Bone Marrow Donor Registry (UBMDR) 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.

Day 1 - 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 3: The Donation
First Published in Imprint 2007-07-13 and Steven's Blog Friday, July 13, 2007 as 'Saving a life: making the donation.'

Day 35 - Collection 5:30AM
The day began with a 5:30am wakeup call. Yet it had been hard to get to sleep knowing what was happening today. It didn't really feel like a lot of sleep with the combination of the bone pain, the unfamiliar bed … we got ready and headed to the hospital.

7:00AM
The day started off rather slowly; we reported to the Apheresis Unit in the Blood Diseases ward. The registered nurse (RN) who would oversee the day's activities, had to verify that some of my answers to the health questionnaires, from earlier in the procedures, had not changed. After that, a line was inserted into a vein in my left arm. Blood samples were collected and the RN then walked the samples down to the lab in the hospital. (She stated that she gets quicker results if she transports them and waits for the results.) Grant and I were free to await her or to go grab something to eat. Since we had already had breakfast on the way, we set up Battle Star Galactica (BSG) on the DVD player in the room.

9:00AM
After the RN returned, she programmed the centrifuge machine, based upon the results of the samples, to the specific characteristics of my blood that day. Once the machine was configured and prepared, we began the preparation on me. I was informed that our blood usually has about 3% of stem cells, after taking the injections of granulocyte colony stimulating factor (G-CSF). My blood was running around 20% based on the tested sample. Now a second, much larger needle, was inserted into a second vein in the left arm. This needle, unlike the flexible ones used for IV drips or for the return line, is a steel needle. From this point on I was not allowed to bend my arm until we had finished for the day and all the lines were removed. If I had bent this arm the needle would have sliced through the vein and we would have had to set up on a different vein somewhere else in my body. This line was used to draw the blood out of the body. It was mixed with Anticoagulant Citrate Dextros Solution (ACD) to prevent it from clotting and clogging up the centrifuge machine. Then it was run through the centrifuge. This machine spins the blood and separates it into the different components based on size. Every so often the machine would slip some of the cells it wanted out of the lines and collect it in a separate compartment.

It was now time to sit back and wait. The goal was to let the machine run until 4 pm. Then Grant and I would be free to return to the hotel for the night, and if we did not get a call, we had to be back the next day at 7 am again.

So we watched the mini-series that launched BSG, and the first disk of episodes from season one. It was hard to concentrate and focus on the movies; all I could really think about was the recipient, and wondering how that person was doing, where was he or she, and had the treatments gone well? What was he or she doing this day in preparation of receiving the PBSC's? Grant's role at the hospital was varied; he was part gopher, part emotional support and part assistant. Grant went across the street to Tim Horton's and grabbed my extra large double double, a large iced capp for the RN, and a small coffee for himself. At lunchtime Grant, again in his role as gopher, ended up going to a Williams Coffee Pub and grabbed lunch for him and me.

1:45PM
The ACD actually strips calcium from your blood to help prevent it from clotting. By early afternoon, I was starting to feel the side effects of this - a little tingling in my lips and fingers and toes. First we tried to treat this with some calcium from TUMS and Usana's Optimizer Active Calcium Chewable. This helped hold it off for a few hours, but finally I asked for the drip. A 3rd needle was now inserted into the back of my right hand to run a Calcium Gluconate drip. We started this around 1:45 pm, and very quickly the tingling in my lips and face subsided.

However, from not moving my left arm most of the day, it was now numb and tingling. My legs were also a little tingly from not being able to get up or stretch out at all. I was, by this time, getting very fidgety and constantly changing my leg positions. Grant again went to get supplies. He grabbed juices for both of us and a stress ball for me to use in my left arm. It really helped me get through to the end of the day.

2:00PM
Grant and I were informed that it had gone very well today. The RN expected us to be done by 4pm and ready to go by 4:30pm. Thus, we were ahead of schedule. We had filtered about 20L of blood; based upon my size, that is my total blood volume by about three and-a-half times. Out of those 20L only 200ml had been removed as the collected substances. The RN even informed us that she had reduced the rate of extraction for the last hour.

It was very overwhelming to see this bag with such a little volume of material in it and know that that was all that was removed during the day. There was the wonder if it was enough or would we be back tomorrow. Would it help the recipient? These and many other questions ran through my mind again and again.

3:00PM
It was time to start wrapping things up. The RN began taking the lines out. First the draw line was stopped and back-flushed with saline to clean the line and prevent a blood clot from forming. Then it was removed and the RN applied pressure for at least 5 minutes. Then while maintaining pressure on this spot, she prepared and removed the return line. She was holding both tight till she wrapped the whole arm in gauze. Next she removed the IV drip line from the right hand. I was informed it looks like a good volume and that if we do not hear from the nurse by 9:30pm we are to come back for a second day of extractions.

4:30PM
Grant and I returned to the hotel. I immediately took a nap. We went out for supper to a nice Irish pub.

7:00PM
Grant and I received voice mail from the RN stating that they had actually harvested twice the requested amount of stem cell count. I could go have a drink and celebrate.

I had to stay in town for 24 hours in case there were complications or any reactions, so that if needed I could go back to the hospital and the ward where the bone marrow - peripheral blood stem cells were extracted.

What Happens After:
I am on hold specifically for this patient for one year from the date of donation. I cannot donate blood during that time, and my profile in the International Blood Donor Registry is pulled and on hold so that I do not match another person. This is in case the recipient is in need of a top-up of stem cells or bone marrow and I can help by donating again. What happens during and/or after that year?

Well that depends on the recipient and the overseeing body for the recipient. In Canada, that is Canadian Blood Services (CBS) through the Unrelated Bone Marrow Donor Registry (UBMDR), and after 3 months, I can find out how the patient is responding to treatment. At 6 months we can exchange letters with no personal information. At one year, if both recipient and donor want to, the CBS will make arrangements for them to meet.

It amazed me the number of people involved to help make this happen. There are doctors and nurses at both the collection and requesting hospitals, who live and work with this day in and day out. Then there are CBS coordinators at both the National and regional levels, who oversee the procedure for the donors after a match is found. Much care and attention is given to donors by the members of the CBS, to make sure the experience is the best possible for them.

Having gone through all of this, would I do it again? Yes, there is no doubt. To be uncomfortable for about a week for the chance to possibly save someone's life - well, there would be no hesitation on my part. I would also encourage anyone in good health and in the age range, to be a bone marrow donor, to check out the information on www.blood.ca and consider joining the registry. Also tell others about the registry and how easy it could be for you to change someone's life. Even if you find out you cannot be a donor, help to inform others about the registry. The more people we can get on the UBMDR, the more lives we can help to transform.

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