So the dates appear to be set. I think it's safe to say that I'll be going to Georgetown University Hospital in Washington D.C. for my physical and then again for the donation. Since Georgetown University Hospital does more bone marrow harvests than any other facility in the country, this process will still be somewhat anonymous.
I will be flying out in about a week and a half for my physical. I will stay overnight then come back home. I will be alone for this part of the process, so I'm not sure what all I will do in Washington D.C. for just a day. I'll probably walk around and photograph as much as I can while I am still at 100% health, because when I go back for my donation, I will have been taking the filgrastim injections and those can make you tired and achy so I may not be up for a lot of walking then. I may stop by Capitol Hill and see if Bill is still hanging out on the steps.
I have been thinking a lot about the recipient. What he is going through right now to prepare for this. I've been reading as much as I can about the whole process, and when patients go through chemo/radiation treatment designed to cause remission, they say that the initial treatments are tough as they are a high dose. When it gets to the point that the patient needs a bone marrow transplant, they must completely kill all of the existing cells with chemo/radiation, and the doses required for this are even higher than they have ever had at any time in their treatment. This must be incredibly difficult to go through, but I can only imagine knowing that there is a donor waiting to help them keeps them going through it. I asked today if the patient was in the United States or not, and they said they can't reveal that info yet, but will be able to tell me when I donate. I'm also curious what the background is of the patient, since we are a genetic match.
I also think a lot about their family and what they have endured through this. You have to wait one year before you can request to find out who the patient is, and the patient will have to agree to identify themselves. I will be able to find out basic things after certain periods of time, like how the procedure went, if they are getting better, etc, but I will be counting down the days hoping that we can meet some day. Perhaps they would enjoy reading my blog and see how excited I am to help.
During all my reading about the filgrastim injections, it looks like they are going to sting a little when I get them. I hope that I do not have any reactions to the shots. I can stand a little discomfort and take Tylenol to help with any small aches. These are the shots that I will get for 5 days leading up to and including the donation day that increase and move more blood-forming cells from your bone marrow to your bloodstream. Whatever happens, sting or not, it's only a handful of shots and some aches and pains, it's the least I can do!
I read that according to the National Marrow Donor Program website, www.marrow.org, the odds of a non-family-member getting to this stage are about 1 in 20,000, and for those matches, 1 in 12 are chosen to donate. So I was thinking, between this, and getting struck by lightning in my Corvette back in 2001, I can't figure out why I have not won the lottery yet. Maybe I should still buy a ticket once in a while. Who knows what could happen...
Thursday, February 27, 2014
Wednesday, February 26, 2014
I love it when a plan comes together....
So I just spent almost an hour on the phone with the coordinator from Delete Blood Cancer (DKMS). We went over the entire procedure and what to expect. I will go to the hospital pretty soon to complete a physical to ensure I am healthy enough to go through the donation procedure, and to also make sure my veins are big enough for the needles! I'm always told that I have good veins and they never have to poke around to draw blood, so I'm guessing I'll be fine in this area. I did find out that the patient that I'm helping is a gentleman that is older than I am that has Acute Myeloid Leukemia. That's about all I can say.
Once they complete the physical and everything checks out there, the patient will undergo Chemotherapy and it is vital that I go through with this or they will certainly die. The form of leukemia he has is acute, which means it can progress quickly, and if not treated would be fatal in a few months. I feel like it's a no-brainer decision here. I either help him or he dies. I have an appointment with my family doctor in a few days to discuss the procedure and get his thoughts on the process. The injections that I will receive for 5 days prior to the donation are a stimulant to produce additional stem cells in the blood prior to the collection. From what I've read, there can be considerable discomfort while taking these injections. I don't mind being uncomfortable for a week to help save a life, but I would just like to hear my doctors opinion on the whole thing. Overall I'm very much looking forward to this, it is mind blowing to think that his life completely depends on me right now, but I'm only more than happy to help.
So the dates are almost set, everything will happen in the next few weeks. The coordinator is getting flight info and hotel reservations ready for me, as I will be going East to a hospital to get my physical and then again for the donation.
Once they complete the physical and everything checks out there, the patient will undergo Chemotherapy and it is vital that I go through with this or they will certainly die. The form of leukemia he has is acute, which means it can progress quickly, and if not treated would be fatal in a few months. I feel like it's a no-brainer decision here. I either help him or he dies. I have an appointment with my family doctor in a few days to discuss the procedure and get his thoughts on the process. The injections that I will receive for 5 days prior to the donation are a stimulant to produce additional stem cells in the blood prior to the collection. From what I've read, there can be considerable discomfort while taking these injections. I don't mind being uncomfortable for a week to help save a life, but I would just like to hear my doctors opinion on the whole thing. Overall I'm very much looking forward to this, it is mind blowing to think that his life completely depends on me right now, but I'm only more than happy to help.
So the dates are almost set, everything will happen in the next few weeks. The coordinator is getting flight info and hotel reservations ready for me, as I will be going East to a hospital to get my physical and then again for the donation.
in the beginning....
I am starting this blog to write out my thoughts and events that occur as I begin the process of donating peripheral blood stem cells. Peripheral blood stem cell, or PBSC, donation is one of two methods of collecting blood-forming cells for bone marrow transplants. The same blood-forming cells that are found in bone marrow are also found in the circulating (peripheral) blood. For PBSC donation, your blood is removed through a needle in one arm and passed through a machine that will collect only the blood-forming cells. The remaining blood is returned to you through a needle in the other arm. This process is similar to what is used when donating blood platelets.
My story begins around October 2008, when my wife and I attended an FC Dallas soccer game and there was a booth set up to collect cheek swabs in an effort to find a bone marrow match for a players wife. Real Salt Lake forward Andy Williams' wife Marcia was diagnosed earlier that year with Leukemia, and in trying to find a match for her, they had a drive at the game to find potential donors. We filled out the forms and rubbed the cotton swab in our cheek and didn't think much of it after that. She eventually went on to have a cord blood transplant in 2009, as they could not find a suitable bone marrow donor, and has done well with her recovery.
More than 5 years after getting swabbed at that soccer game, on December 20th, 2013, I received email on two email accounts that I use, and a phone call on our home phone informing me that I was a potential match for someone! I did not see the emails right away and was not home to get the call, so I was a little anxious to see what was going on.
The next day, I called Delete Blood Cancer (DKMS) and asked how I could help. They said that my swab had indicated I was a potential match for someone and asked if I could go in for blood tests. Due to the Christmas holiday, I was not able to get my blood drawn until the 26th. They took seven vials of blood and had them shipped off immediately for testing. They look for signs of any infectious diseases that would prevent you from donating such as HIV or hepatitis, or any other conditions that would not allow you to donate, like cancer or diabetes.
It was a long period of waiting after this, to know for sure if I was going to be the one asked to donate. Sometimes, there are several candidates and the doctors will determine who is the closest match. They said at the time they contacted me that I was the only possible match in the database, so it was pretty likely that I would be the only one that could help save this persons life.
I finally received the call on February 25th that the blood tests looked good, I am healthy and the doctor would like me to donate. I responded with the answer, "yes, I would be happy to donate" without any hesitation.
The next step from here is a long conversation to go over the entire process, and sign some forms. That will happen later today. Due to the private nature of the entire donation process, I have to be vague about when and where the donation will occur, and not reveal anything I learn about the patient.
I'm very much looking forward to this process, even though I know there will be several days where I'm not going to feel too good. I know that somebody is going through much worse and is depending on me to help them survive.
Stay tuned, as many of you know, I love to photograph, and I will try to include as many pictures of the process as I can. Things are about to start moving quickly, and then a long wait to know if my donation helped.
My story begins around October 2008, when my wife and I attended an FC Dallas soccer game and there was a booth set up to collect cheek swabs in an effort to find a bone marrow match for a players wife. Real Salt Lake forward Andy Williams' wife Marcia was diagnosed earlier that year with Leukemia, and in trying to find a match for her, they had a drive at the game to find potential donors. We filled out the forms and rubbed the cotton swab in our cheek and didn't think much of it after that. She eventually went on to have a cord blood transplant in 2009, as they could not find a suitable bone marrow donor, and has done well with her recovery.
More than 5 years after getting swabbed at that soccer game, on December 20th, 2013, I received email on two email accounts that I use, and a phone call on our home phone informing me that I was a potential match for someone! I did not see the emails right away and was not home to get the call, so I was a little anxious to see what was going on.
The next day, I called Delete Blood Cancer (DKMS) and asked how I could help. They said that my swab had indicated I was a potential match for someone and asked if I could go in for blood tests. Due to the Christmas holiday, I was not able to get my blood drawn until the 26th. They took seven vials of blood and had them shipped off immediately for testing. They look for signs of any infectious diseases that would prevent you from donating such as HIV or hepatitis, or any other conditions that would not allow you to donate, like cancer or diabetes.
It was a long period of waiting after this, to know for sure if I was going to be the one asked to donate. Sometimes, there are several candidates and the doctors will determine who is the closest match. They said at the time they contacted me that I was the only possible match in the database, so it was pretty likely that I would be the only one that could help save this persons life.
I finally received the call on February 25th that the blood tests looked good, I am healthy and the doctor would like me to donate. I responded with the answer, "yes, I would be happy to donate" without any hesitation.
The next step from here is a long conversation to go over the entire process, and sign some forms. That will happen later today. Due to the private nature of the entire donation process, I have to be vague about when and where the donation will occur, and not reveal anything I learn about the patient.
I'm very much looking forward to this process, even though I know there will be several days where I'm not going to feel too good. I know that somebody is going through much worse and is depending on me to help them survive.
Stay tuned, as many of you know, I love to photograph, and I will try to include as many pictures of the process as I can. Things are about to start moving quickly, and then a long wait to know if my donation helped.
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