Every now and then, an adventure comes knocking on our door. It is up to us to decide if we want to heed the call and take the time to make a detour in life. An adventure came in the form of a bone marrow donation request at the beginning of the year. This is a chronicle of the donation process, as I want to encourage everyone healthy to sign up to be on the Be the Match Marrow Registry. I’ll be updating this as I start to get updates on the patient. Enjoy.

December 2013

I receive a Christmas card from my recipient the week before Christmas.  The card is sent through the registry and I go down to get it. I can hardly wait to read it! So she is doing fine and thanks me for what I have done. Halfway through reading the letter I get all teary-eyed. I’m so happy to know that she is doing well, it makes it all worth it. By far the best Christmas present I’ve had in a long time.

My blood is running through some one else’s veins! Funny thought.

April 14, 2013

I received a quick one-year update on my recipient. They tell me she is fine! Good news.

September 2012

Recipient Update

I received the 6-month update today. Valentine has gone home. She is still not 100% but slowly recovering. Slow and steady, Valentine!

June 2012

Recipient Update

Today I got the 3-month update. I guess they were mistaken that she had gone home, but here is what the update said.

“Patient has engrafted, is recovering well and though not discharged from hospital yet, is expected to be soon.”

Well, she’s still hanging in there. I’ve decided to call her Valentine as my donation was on Valentine’s Day. So hang in there, Valentine! We’re rooting for you….

May 2012

Recipient Update

I finally got an update today. The email I got from the Hawaii Bone Marrow Registry reads:

“30 day update on recipient – Cells have engrafted, recovering well, to be discharged in a few weeks. Report was for 30 day update so patient must have gone home.”

She’s gone home!! This little message made my day.

February 2012

Be the Match Marrow Registry

I have been on the bone marrow registry for almost ten years. I had actually been called in for confirmatory testing twice before, but had never progressed beyond that stage. Then in late January this year, I got another enquiry about whether I was still willing to donate. I went back to the Hawaii Bone Marrow Registry and gave the few vials of blood again, but strangely, this time, I just had a strong feeling that it was really going to happen; being asked to donate is like striking a lottery!

Agreeing to Donate

Getting the call was therefore not a surprise, on the contrary, it was very exciting and I felt like I had been blessed to help someone in a unique way. I could hardly wait to tell my friends and everyone at work! Everyone was very supportive and encouraging, which made me feel much loved. My recipient is a woman with acute aplastic anaemia. She is about my age and one of my close friends commented that I had found my “twin”. Deciding to donate was an easy decision. I have been given the gift of health, which is why I can be a donor, and on the other end is someone who is battling for their life. What is a week of minor physical discomfort compared to that? The risks of the donation are relatively small and I have gone through much greater inconveniences to achieve much smaller things.

Starting the Donation Process

I went in once again to give yet more vials of blood, had a physical and an x-ray. I got a lecture from the doctor to stay healthy, I read the consent form carefully, and was reminded that while I could withdraw consent at any time, if the patient had started treatment already, then she would probably die. Catching a cold or getting an infection would similarly rule out donation, so I would have to be careful between now and the donation date.

Because the procedure was no longer being performed in Hawaii, I would have to fly out to San Diego and go to Scripps Green for the bone marrow harvest. The preferred method was to harvest it right out of my hip, which I liked because it did not require taking any drugs before hand. The only risk was being under general anaesthesia.

For a few weeks everyone was busy getting their ducks in a row – the Hawaii Bone Marrow Registry had to book an operation date for me at the hospital, and schedule the pre-op briefing, autologous blood donation appointment, hotel stays, transportation, and I had to take time off work, rustle up a companion to come care for me for the few days, rearrange my work schedule etc.

We did suddenly get a call however, from the patient’s doctor, asking for the bone marrow harvest to be postponed. Normally these postponements are due to illness on the recipient’s part, but in this instance, it was due to a death in her family. They wanted to move the donation date back by a week or more. We were left in a bit of a quandary, what to do? In the end, we decided to go ahead with the donation as it wasn’t a matter of the recipient’s health, and the marrow could be cryogenically frozen till she was ready to receive it. It seems like tragedy upon tragedy does it not? Here you are, desperately ill already, and now someone else close to you has died and there is grief added on to the pain of the illness. How does one simply carry on under circumstances like this? I hope she gathers the courage to keep fighting on.

Meeting the Doctors and Staff

The first trip to San Diego was to meet the doctors and nurses at Scripps Green. Scripps Green has been doing bone marrow transplants for over 30 years, and the hospital is an actual organ transplant center, and also a research facility. It seemed like such an integrated facility, and after talking to the nurse Cindy Nelson and the doctor James Mason, I not only felt like I was in really good hands, I was feeling excited about being a participant of this great research that was being done to help cure people of their illnesses! It was wonderful to be able to see the big picture and to feel like one was contributing to the whole. The procedure was carefully explained to me, there was going to be a doctor working on each side of the hip; they did not hide that they would be poking quite a few numerous holes in my hip (“if you do the math, it’s around a hundred” they said matter-of-factly) to draw the marrow out and that it could be potentially uncomfortable for a few days. They were taking a total of about a liter of marrow and blood! That’s a little bit more than 2 pints. I’m not a big person, and that sure felt like a lot. I was to stay for one night in the hospital after the procedure. They did patiently answer all my questions as I was nervous about being a hospital patient for the first time then thanked me profusely for being a willing donor. It’s a strange feeling, being thanked, as I was already feeling blessed and thankful for my health and for being given a unique opportunity to help someone. Being able to donate is like a gift really, because you couldn’t look to do it even if you wanted to.

The day ended by giving more vials of blood for tests, then going to the local blood bank to give a unit of blood. I would get the blood back during the surgery and it was supposed to help with reducing the tiredness. Given that I was going to be short a liter of blood and marrow, I was quite happy to know that I was going to get some back. I was glad when the day was over, being poked and pricked with every visit to the doctor’s was starting to get old!

The Big Day

One week later, my friend Susan and I flew back to San Diego. The procedure was scheduled on Feb 14, Valentines Day! It was going to be easy to remember this special day. We were at the hospital bright and early at 630 am whereupon Cindy took me to the operating wing. There we went through the requisite blood tests yet again, I changed and the doctors and anaesthesiologist all came by to say hello and check in on me. Then everyone vanished and went to get ready in the operating room. Shortly after, the nurse came and put in the needle for the intravenous drip, then I said goodbye to Susan and followed the nurse into the operating room. There, everyone was clad in green just like in the movies, I climbed on the bed, looked at Cindy and said, “I sure hope this works out for her”. Lying down, I could see the big operating table lights overhead. They soon stuck the EKG pads on my chest and I could hear my own heart beeping in the room. The blood pressure armband inflated and deflated every few minutes and registered on a screen above me, they then put an oxygen mask on my face. The anaesthesiologist appeared in my field of view and injected something into my IV line, saying “This may make your vision blurry”, which it did. I was glad he had said so, because then I didn’t get anxious. Then he said “You’ll be asleep in 45 seconds”, my eyelids got heavy and I was out.

I woke up in the recovery room, all groggy but otherwise fine. It was like waking up from a really deep sleep. I vaguely remember the anaesthesiologist coming in and talking to me. I must have said all the right things as shortly after, they wheeled the bed out of the recovery room. I remember thinking that the movies do quite a good job at representing hospitals, as I watched the lights go by overhead. We did a couple of turns on the corridors, got into the elevator with a bunch of other people, then I found myself in the hospital room proper. They gave me a room with a view! I could see the ocean in the distance through the trees. The cheery nurse stopped by and provided me with water and juice. I was still connected to the IV and I wobbled to the bathroom with it. I had a big pad of bandages on my hip right above my butt, looking just like a sumo wrestler! They finally disconnected the IV and I felt hungry, and practically inhaled two bowls of soup for lunch. Cindy stopped by later with a Valentine’s Day card made by the volunteers at the hospital and also to tell me that the marrow was already on its way to the recipient. She also said, “You did good” which made me wonder what that meant. I was afterall asleep the whole time, what exactly did I do well? Susan reappeared after lunch and by that time I was feeling well enough and persuaded her and the nurses to let me out for a short walk. We took a slow walk around the hospital and chatted and picked up some pine cones. It was then that I realized that my feet weren’t completely listening to me all the time, the anaesthetic had not completely worn off yet. We rambled back to the hospital, and I noticed that my legs and arms had become a bit tingly and that they were a little swollen. I told the nurses, who told the doctor, who wasn’t too concerned, as it is apparently a known side effect of the anaesthesia.

Susan left in the evening, after we watched the sun set from the window. I sent off quite a few emails and text messages to folks who were asking after me. It felt good to be able to tell everyone that I was fine. My friend at the Hawaii Bone Marrow Registry reminded me to “be a good patient” after they found out I had been out picking pine cones! I really wasn’t in much pain at all as long as I was sitting, lying down or walking, I was only reminded of the discomfort when I tried to get up, sit down and lie down. It took a while to get used to the bed, as it would inflate and deflate on its own every few minutes, it did that to prevent bed bound people from getting bed sores. It also helped me as I did not have to move much during the night as the bed definitely cut down on having to turn and shift to a new position as often, as I would wake up and shift around gingerly each time I had to do that.

Discharge Day

I was all ready to leave once breakfast was done. My limbs felt fine, they were not tingling anymore and seemed to be doing what I wanted. Susan appeared shortly after breakfast, then so did the nurses and the doctor (Dr. Edward Kavalerchik, who was working opposite Dr. James Mason). We gave the staff a box of Hawaiian chocolates as is traditional when Hawaiians travel! They took the big sumo bandage off, which was pretty blood soaked, but the bleeding had stopped and all I got were 4 band aids over the incisions. I found out that they had only made around 60 holes in my hip, as they managed to get quite a lot of marrow with each extraction – that was what they meant by “You did good!” I was given instructions on how to care for the incisions, how much activity to do and that I should be all mended in 4 to 6 weeks, bone, marrow, skin and all. It was a very cheery parting, with everyone wishing everyone well, I couldn’t have asked for a better first hospital stay. Cindy gave me a certificate of appreciation, a mug and a t-shirt, as I was part of the team now. It was a small gesture, but I already know that those are going to be favorite mugs and t-shirts for a long time.

Just before I left, they took the IV needle out and I was free!!

One Week After

I got a couple of calls from the hospital and the registry a few days after the procedure, to check in. Day 2 and Day 3 were probably the most uncomfortable, I could walk easily, but slowly, but going up and down stairs or carrying any weight was difficult. I was definitely on the lookout for wheel chair ramps and elevators. Each day after that found me doing more and more and after a week I was moving around without much thought and ten days later, I was starting to run around like my usual self again. The incisions are still a little sore, there are some hard lumps right under the incision developing as part of the healing process, but those are supposed to dissolve over the next few weeks.  All in all, it’s easy to tell when I’m starting to overdo it, and it isn’t hard to remember to stop and slow down, but life is pretty much back to normal.

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