You never know...
Mar. 6th, 2012 11:44 pm![[personal profile]](https://www.dreamwidth.org/img/silk/identity/user.png){kind=small}
aribWhen I was seventeen, I signed up with the National Marrow Donor Program. They took a tube of blood. Aside from the occasional e-mail and postcard, I don't hear from them very much. About a year or so ago, I also signed up with The Caitlyn Raymond International Registry. They were having a sign-up drive near my office, and asked me to sign up despite already being on the NMDP registry.
Last summer, I was contacted by CRIR, and was informed that I was a potential match for a patient in need of a bone marrow transplant. I was asked to provide blood for additional testing. This required a quick trip to BMC, where a phlebotomist took a surprisingly large number of test tubes of my blood, packed them in ice and shipped them off in a FedEx box for testing.
The results of the test showed that I was a good match for the patient, but I was told by the registry that the patient's doctors wanted to hold off. While I couldn't be told specific details, this could have been due to the doctors wanting to try other treatments first, or because the patient was too ill to handle a transplant at that time.
Three months later, I was told that I was being taken off of the potential donor list, and returned to the general population. From what I was told, it looked like the patient's doctors had decided to hold off for the time being, and a transplant was off the table.
For a while, as far as I was concerned, that was all she wrote.
About a month ago, I got another phone call from a donor advocate at CRIR. The patient's medical team had decided to go ahead with a transplant. I was still the best match for the patient, and would I like to go forward?
As soon as I answered yes, things kicked into high gear very quickly. The first step for me, aside from a small pile of consent forms to sign and literature to review, was a comprehensive physical exam. The exam was scheduled for approximately two weeks from my donation date, and took place at the UMass Medical center in Worcester. It was probably the most detailed exam I've ever received, and included more bloodwork, urinalysis, two chest x-rays, and an EKG.
Throughout this whole process, my anonymity, and the anonymity of the patient were pretty strongly protected. Any of my paperwork that was going to the patient's doctors didn't have my name, or any identifying information attached to it, just a code number. I was given almost no information about the patient other than gender, age (both of which I'll keep out of this post), and diagnosis (multiple myeloma, a form of blood cancer).
After the results of the physical came back and were approved, my donation date was finalized, and I learned a bit more about how that process was going to work.
Bone marrow donation can be done two different ways. The first way is done under general anesthetic. A hole-borer is used to drill one to four holes in the donor's hip bones, and the marrow is aspirated with a large-bore syringe.
(When my PCP used the word "hole-borer," I told him "it's okay, you can say cordless drill." He was quick to correct me by saying "no, it's a hole-borer." I stand corrected. :-) )
Nowadays, most marrow donations are done using a newer method, apherisis. For 4-5 days prior to donation, the donor receives injections of a drug called neupogen that causes him or her to produce Hematopoietic Stem Cells. These cells are made naturally by your body at all times, and can differentiate into any kind of blood-related cell. However, they don't usually exist in your body in sufficient numbers to be used for donation. Hence the drug.
After taking the drug, the donor is connected to a pheresis machine. Basically a device that takes the donor's blood, filters out the needed cells, and returns the unneeded portion back to the donor. If you've ever donated platelets (like I have) or plasma, you've been connected to one of these machines.
The patient's medical team had expressed a preference for HSC donated by pheresis, rather than direct aspiration. Despite my initial leeriness about Neupogen and it's related side effects, I was hoping to avoid surgery, so we went that route.
(side effects include- pain or burning at the injection site, bone and joint pain, nausea, insomnia, fever, rashes; and in rare cases, splenic rupture and Acute Respiratory Distress Syndrome. Fortunately, I only experienced the first two, and only on the last three days)
A week ago Sunday, before I started on the Neupogen, I got a final go/no-go phonecall from my donor advocate. The next day, the patient was going to start "pre-conditioning," a series of radiation and chemotherapy doses designed to wipe out the remainder of his/her bone marrow in preparation for receiving mine. While I had the right to revoke my consent at any time during the process, doing so after pre-conditioning would mean that I would be effectively stranding him or her without any functioning immune system. Obviously, the result would be disastrous at that point, so they wanted to be as sure as possible that I was on board and ready to go.
Last Thursday, I went to the blood center where the donation was scheduled to take place for my first dose of the drug. The first dose was done at the blood center so I could be monitored for any allergic reactions. After that, I was sent home with a supply of syringes and an insulated box containing my additional doses.
Each morning for the next three days, a visiting nurse came to my apartment, took my vital signs, and gave me a shot in each arm. I worked from home on Friday, and was home over the weekend. As I alluded to earlier, the bone pain made my weekend very uncomfortable. My hips and femurs were sore, and would occasionally have spikes of pain or a throbbing feeling. Every so often, it felt like a giant hand reached just inside my chest, and gave my sternum a hard squeeze. Fortunately, the pain was manageable with Tylenol. Aliza was a real trooper over the weekend, taking the bulk of childcare duties so that I could rest.
RAB had to content herself with a few days of "let's play the game where Abba lies on the floor and RAB brings him books to read to her." She was her usual snuggly self, and didn't seem too upset that I couldn't pick her up as often as I usually do. It also helped that she recently learned how to give hugs. Big floppy baby hugs can fix just about anything.
Lots of family members also came to visit on Sunday and keep RAB entertained so Aliza could work and I could rest.
Monday finally arrived. I woke up at 5AM, and my dad gave me a lift down to the blood center in Providence, RI. He and Aliza kept me company throughout the day. After a brief pre-donation interview and my final Neupogen dose, I was connected to the pheresis machine.
An IV in my left arm drew out my blood, mixed it with an anticoagulant, and passed it through the machine, which centrifuged the HSC out, and returned the rest of my blood to me through an IV in the back of my right hand. I wasn't able to bend my left arm at all, and had limited use of my right.
When I was connected to the machine, the initial expectation was for me to be plugged in for five hours, with the likelihood that I would need to return the next day for a few hours of additional donation time. In the end, I was connected to the machine for six hours, and didn't need to come in for a second day.
Here's a quick self-portrait of me, shortly after being connected to the pheresis machine. The larger IV bag contained the anticoagulant (a citrate), the smaller bag contained calcium gluconate. The citrate anticoagulant bonds very readily with calcium, which means that it would remove calcium from my body. The calcium gluconate was given as a replacement for the removed calcium, and to help minimize the side effects of the citrate (mostly tingling in the lips, hands and feet). The coil you can see is a warming device that helps bring the returned blood closer to body temperature before returning it into the body.
Here's a picture taken a few hours into the procedure that shows more of the machinery. The bag that looks like it's partially filled with tomato soup is the stem cells.
What did I do for six hours? Sat around, sent a few texts, watched TV, chatted with my dad, Aliza and the nurses, and tried very hard not to move my left arm, or itch very much.
(Some of you may ask, "Ari, six hours is a long time. Didn't you need to use the bathroom?" To which I can only respond, "why yes. Yes, I did." I will leave the mechanics of such an event to the imagination of the reader.)
Finally, my time on the machine came to an end. I was disconnected from the machine, given some aftercare instructions, and sent home. My hands and feet were still very tingly and numb, but improved as time went by. Within a few hours, I had full feeling back in my extremities.
A few more pictures:
Aliza and me.
The final product. Six hours connected to a device the size of a small washing machine for a 360 ml bag of goop. That's only slightly more than a can of soda. As soon as the medical staff and my donor advocate learned that I only needed one day on the pheresis machine, my bag of cells had a plane ticket and courier that would take it to it's final destination. The cells have a pretty short shelf-life outside of the body, approximately 48 hours unless they're cryopreserved. As I write this, I can only assume that the patient has either received the transfusion, or will receive it shortly.
When I was initially disconnected from the pheresis machine, I felt great. I'm chalking most of this up to a combination of adrenaline, and having the excess cells removed from my bloodstream. As the day went on, I became very tired, and was still experiencing some of the bone pain and side effects from the Neupogen.
I had initially planned to take today off, expecting to go in for a second day of donation. Instead, I spent the day at home recovering. My fatigue levels have decreased a lot, and while I still have some soreness and bone pain, it's not nearly as severe as it was over the weekend. I'm told that the Neupogen will be completely out of my system in another day or two, and the symptoms should be relieved by then.
I'll be getting regular phone calls from my donor advocate for another few days, as well as another check-in six months from now. I may or may not be able to communicate anonymously with the patient, depending on whether or not he or she wants to communicate with me and if he or she lives in a country where anonymous communication between donor and recipient are allowed. (Some countries are stricter than others, and never allow contact. Others require anonymous contact only, or allow anonymity to be dropped after a certain amount of time elapses.)
How do I feel now? I'm tired, and processing a lot of feelings. That said, I'm happy I did it. I'd definitely encourage those of you that can do so to go out and get registered. The odds of you being a match for anyone are small, but you never know...
Last summer, I was contacted by CRIR, and was informed that I was a potential match for a patient in need of a bone marrow transplant. I was asked to provide blood for additional testing. This required a quick trip to BMC, where a phlebotomist took a surprisingly large number of test tubes of my blood, packed them in ice and shipped them off in a FedEx box for testing.
The results of the test showed that I was a good match for the patient, but I was told by the registry that the patient's doctors wanted to hold off. While I couldn't be told specific details, this could have been due to the doctors wanting to try other treatments first, or because the patient was too ill to handle a transplant at that time.
Three months later, I was told that I was being taken off of the potential donor list, and returned to the general population. From what I was told, it looked like the patient's doctors had decided to hold off for the time being, and a transplant was off the table.
For a while, as far as I was concerned, that was all she wrote.
About a month ago, I got another phone call from a donor advocate at CRIR. The patient's medical team had decided to go ahead with a transplant. I was still the best match for the patient, and would I like to go forward?
As soon as I answered yes, things kicked into high gear very quickly. The first step for me, aside from a small pile of consent forms to sign and literature to review, was a comprehensive physical exam. The exam was scheduled for approximately two weeks from my donation date, and took place at the UMass Medical center in Worcester. It was probably the most detailed exam I've ever received, and included more bloodwork, urinalysis, two chest x-rays, and an EKG.
Throughout this whole process, my anonymity, and the anonymity of the patient were pretty strongly protected. Any of my paperwork that was going to the patient's doctors didn't have my name, or any identifying information attached to it, just a code number. I was given almost no information about the patient other than gender, age (both of which I'll keep out of this post), and diagnosis (multiple myeloma, a form of blood cancer).
After the results of the physical came back and were approved, my donation date was finalized, and I learned a bit more about how that process was going to work.
Bone marrow donation can be done two different ways. The first way is done under general anesthetic. A hole-borer is used to drill one to four holes in the donor's hip bones, and the marrow is aspirated with a large-bore syringe.
(When my PCP used the word "hole-borer," I told him "it's okay, you can say cordless drill." He was quick to correct me by saying "no, it's a hole-borer." I stand corrected. :-) )
Nowadays, most marrow donations are done using a newer method, apherisis. For 4-5 days prior to donation, the donor receives injections of a drug called neupogen that causes him or her to produce Hematopoietic Stem Cells. These cells are made naturally by your body at all times, and can differentiate into any kind of blood-related cell. However, they don't usually exist in your body in sufficient numbers to be used for donation. Hence the drug.
After taking the drug, the donor is connected to a pheresis machine. Basically a device that takes the donor's blood, filters out the needed cells, and returns the unneeded portion back to the donor. If you've ever donated platelets (like I have) or plasma, you've been connected to one of these machines.
The patient's medical team had expressed a preference for HSC donated by pheresis, rather than direct aspiration. Despite my initial leeriness about Neupogen and it's related side effects, I was hoping to avoid surgery, so we went that route.
(side effects include- pain or burning at the injection site, bone and joint pain, nausea, insomnia, fever, rashes; and in rare cases, splenic rupture and Acute Respiratory Distress Syndrome. Fortunately, I only experienced the first two, and only on the last three days)
A week ago Sunday, before I started on the Neupogen, I got a final go/no-go phonecall from my donor advocate. The next day, the patient was going to start "pre-conditioning," a series of radiation and chemotherapy doses designed to wipe out the remainder of his/her bone marrow in preparation for receiving mine. While I had the right to revoke my consent at any time during the process, doing so after pre-conditioning would mean that I would be effectively stranding him or her without any functioning immune system. Obviously, the result would be disastrous at that point, so they wanted to be as sure as possible that I was on board and ready to go.
Last Thursday, I went to the blood center where the donation was scheduled to take place for my first dose of the drug. The first dose was done at the blood center so I could be monitored for any allergic reactions. After that, I was sent home with a supply of syringes and an insulated box containing my additional doses.
Each morning for the next three days, a visiting nurse came to my apartment, took my vital signs, and gave me a shot in each arm. I worked from home on Friday, and was home over the weekend. As I alluded to earlier, the bone pain made my weekend very uncomfortable. My hips and femurs were sore, and would occasionally have spikes of pain or a throbbing feeling. Every so often, it felt like a giant hand reached just inside my chest, and gave my sternum a hard squeeze. Fortunately, the pain was manageable with Tylenol. Aliza was a real trooper over the weekend, taking the bulk of childcare duties so that I could rest.
RAB had to content herself with a few days of "let's play the game where Abba lies on the floor and RAB brings him books to read to her." She was her usual snuggly self, and didn't seem too upset that I couldn't pick her up as often as I usually do. It also helped that she recently learned how to give hugs. Big floppy baby hugs can fix just about anything.
Lots of family members also came to visit on Sunday and keep RAB entertained so Aliza could work and I could rest.
Monday finally arrived. I woke up at 5AM, and my dad gave me a lift down to the blood center in Providence, RI. He and Aliza kept me company throughout the day. After a brief pre-donation interview and my final Neupogen dose, I was connected to the pheresis machine.
An IV in my left arm drew out my blood, mixed it with an anticoagulant, and passed it through the machine, which centrifuged the HSC out, and returned the rest of my blood to me through an IV in the back of my right hand. I wasn't able to bend my left arm at all, and had limited use of my right.
When I was connected to the machine, the initial expectation was for me to be plugged in for five hours, with the likelihood that I would need to return the next day for a few hours of additional donation time. In the end, I was connected to the machine for six hours, and didn't need to come in for a second day.
Here's a quick self-portrait of me, shortly after being connected to the pheresis machine. The larger IV bag contained the anticoagulant (a citrate), the smaller bag contained calcium gluconate. The citrate anticoagulant bonds very readily with calcium, which means that it would remove calcium from my body. The calcium gluconate was given as a replacement for the removed calcium, and to help minimize the side effects of the citrate (mostly tingling in the lips, hands and feet). The coil you can see is a warming device that helps bring the returned blood closer to body temperature before returning it into the body.
Here's a picture taken a few hours into the procedure that shows more of the machinery. The bag that looks like it's partially filled with tomato soup is the stem cells.
What did I do for six hours? Sat around, sent a few texts, watched TV, chatted with my dad, Aliza and the nurses, and tried very hard not to move my left arm, or itch very much.
(Some of you may ask, "Ari, six hours is a long time. Didn't you need to use the bathroom?" To which I can only respond, "why yes. Yes, I did." I will leave the mechanics of such an event to the imagination of the reader.)
Finally, my time on the machine came to an end. I was disconnected from the machine, given some aftercare instructions, and sent home. My hands and feet were still very tingly and numb, but improved as time went by. Within a few hours, I had full feeling back in my extremities.
A few more pictures:
Aliza and me.
The final product. Six hours connected to a device the size of a small washing machine for a 360 ml bag of goop. That's only slightly more than a can of soda. As soon as the medical staff and my donor advocate learned that I only needed one day on the pheresis machine, my bag of cells had a plane ticket and courier that would take it to it's final destination. The cells have a pretty short shelf-life outside of the body, approximately 48 hours unless they're cryopreserved. As I write this, I can only assume that the patient has either received the transfusion, or will receive it shortly.
When I was initially disconnected from the pheresis machine, I felt great. I'm chalking most of this up to a combination of adrenaline, and having the excess cells removed from my bloodstream. As the day went on, I became very tired, and was still experiencing some of the bone pain and side effects from the Neupogen.
I had initially planned to take today off, expecting to go in for a second day of donation. Instead, I spent the day at home recovering. My fatigue levels have decreased a lot, and while I still have some soreness and bone pain, it's not nearly as severe as it was over the weekend. I'm told that the Neupogen will be completely out of my system in another day or two, and the symptoms should be relieved by then.
I'll be getting regular phone calls from my donor advocate for another few days, as well as another check-in six months from now. I may or may not be able to communicate anonymously with the patient, depending on whether or not he or she wants to communicate with me and if he or she lives in a country where anonymous communication between donor and recipient are allowed. (Some countries are stricter than others, and never allow contact. Others require anonymous contact only, or allow anonymity to be dropped after a certain amount of time elapses.)
How do I feel now? I'm tired, and processing a lot of feelings. That said, I'm happy I did it. I'd definitely encourage those of you that can do so to go out and get registered. The odds of you being a match for anyone are small, but you never know...
![[identity profile]](https://www.dreamwidth.org/img/silk/identity/openid.png){kind=small}
(no subject)
Date: 2012-03-07 06:18 am (UTC)(no subject)
Date: 2012-03-07 06:22 am (UTC)(BTW sorry to be mundane, but you may want to consider adding a cut-tag.)
(no subject)
From:(no subject)
From:(no subject)
Date: 2012-03-07 07:51 am (UTC)Baby hugs make everything better.
(no subject)
From:(no subject)
Date: 2012-03-07 09:42 am (UTC)(no subject)
Date: 2012-03-07 02:23 pm (UTC)(And big floppy baby hugs do, in fact, make everything better. :) )
(no subject)
Date: 2012-03-07 02:45 pm (UTC)(no subject)
Date: 2012-03-07 02:46 pm (UTC)(no subject)
Date: 2012-03-07 04:37 pm (UTC)this is a topic very near and dear to my family. You are a mensch of the highest degree.
(no subject)
From:(no subject)
From:(no subject)
From:(no subject)
Date: 2012-03-08 02:42 am (UTC)(no subject)
Date: 2012-03-09 06:32 am (UTC)As I said before, I am proud of you for doing this, and look up to you for going through it with courage and equanimity.
If you ever feel like sharing in this forum the feelings you are processing, I would love to hear about them.
*hugs* Hope you're feeling great by now.
(no subject)
From:(no subject)
Date: 2012-03-20 04:10 pm (UTC)Thanks!
(no subject)
From:(no subject)
From:(no subject)
From: