For the four days leading up to donation and also on the first donation day I have to get daily injection of filgrastim which is a drug that will stimulate my stem cell production. It is supposed to make me feel a bit tired and achy, but the biggest issue for me is that I have to stop nursing for a week while the filgrastim is in my system. It's for a good cause, but I know E isn't old enough to understand that and he certainly enjoys his nursing time. I anticipate a couple of rough nights at my house this week. Also, I am giving myself the injections. For the first one I have to go to the clinic and the doctor will monitor me for any allergic reaction. After that they will load me up with the necessary supplies and give me a quick crash course in poking myself. I didn't have to do it myself, but since that was an option and needles don't both me I thought I might as well give it a go. Doing the injections at home sounded pretty convenient and I will have the opportunity to show my 4 yr old who just last week received his 4 yr vaccines and complained about how unfair it is that grown ups don't get shots.
Day One
I arrived at the clinic where they took my vitals and of course another blood sample. The nurse came in to give me the injection and since I'm actually getting two injections each day she let me do one today so I could practice. It really wasn't bad at all and I barely felt anything. They loaded me up with two bags containing all the medical supplies I would need.
Day Two
The first night with no nursing went pretty well. Daddy set up a tent in the living room and they had a boys' camp out. Daddy thought it might be easier to break the usual routine and make a night with no mommy seem exciting. I heard E crying for me about 3am, but I stayed put and after a little cartoon distraction and daddy love E was back asleep.
I had to call Arlene before my injections to report my vitals. She is collecting data on my temperature, pulse, and blood pressure every day and is also asking me a slew of questions about how I'm tolerating the medication. I had a little backache this morning, but nothing too uncomfortable. I started feeling a bit tired by the afternoon, but I had a coke and it picked me right up. Caffeine has been a nice perk of my nursing hiatus. By early evening I had mild pain in my neck and legs, moderate pain in my back, and a headache. I took ibuprofen, but I think I probably should have taken it sooner. Lesson learned for tomorrow.
Day Three
Today I felt achy and by early evening I upped my dose of ibuprofen. With the ibuprofen it wasn't bad at all. I felt kind of like I did in the late stages of pregnancy with a dull ache in my back and a general feeling of discomfort, but not enough to stop me from going about my day as normal. Baby E slept through the night without waking to nurse once. He did wake up and cry for me about 5am, but since it was close enough to usual waking time he decided to just get up. He's definitely unhappy about it and today was probably worse because I was by myself with him all day, but he's been doing better than I expected. Big brother has been a huge help offering distractions any time E whines to nurse.
Day Four
I'll admit that day 4 ended up being a little rough, but it was my fault. In the morning we went shopping and then out to lunch. I had taken my ibuprofen and was feeling okay. I lost track of time and was late with my second dose which I regretted. The key is really to not ever let the ibuprofen wear off. I certainly have an appreciation for ibuprofen now because without it I felt horrible, but with it I am okay. By evening I was feeling moderate pain all over even with the ibuprofen so I upped my dose again. Now most of my body feels sore kind of like you would the day after a really tough workout. I catch myself constantly stretching because bone pain does feel a lot like muscle pain. Of course stretching doesn't really help, but it's almost a reflex reaction. Yesterday and today I have been experiencing a sharp throbbing ache in my back every time I stand up. It only lasts about 5 seconds so it's not bad just odd. It's almost like a migraine in my back because I can feel the pain throb along with my heartbeat. Again, it passes very quickly so it's been kind of like holy-mother-of oh wait never mind.
All in all I have to say my experience has been pretty good. The rough times were really my own fault for not being more careful about taking the ibuprofen. My advice to anyone who is considering PBSC is to constantly take something for pain even if you don't think you need it.
Wednesday, November 7, 2012
Orientation & Physical Assessment
A couple weeks later I met Arlene back at the clinic where I had an orientation with a Physician's Assistant. The procedure was described in detail and I was told what I could expect. I also learned that the man who was to receive my cells was in the Netherlands. Usually they don't share the patient's location, but every country has different policies on patient privacy and in the Netherlands sharing location is acceptable. It's kind of awe inspiring to think that in an international registry of 9 million people the closest match for a Dutch patient would be a random girl in Oklahoma. There was more paperwork to sign and more blood to give. I'm telling you, once you hook up with these blood clinic people they do enjoy taking blood.
After my session at the clinic Arlene took me across the street to the cancer center where I would complete my physical. It felt a little odd having Arlene babysit me all afternoon, but my physical included 4 different offices in different parts of the center so I was pretty thankful to have a guide who knew the way around. Also, they gave me a special note from the Marrow Registry that said I shouldn't pay for anything. My first stop was a pulmonary specialist's office where I had a chest x-ray. Next was a cardiovascular practice where I had an EKG. My third stop was a lab where I gave urine and of course more blood. Lastly, I met with an oncologist who I liked very much and only partly because he looked a little bit like Dumbledore. He even had the Harry Potter series in his waiting room so he must be an alright guy.
All in all the battery of testing was pretty humbling. Every waiting room was full of sick people. I was in a cancer center after all. I saw people with no hair, people carting oxygen tanks, and people too weak to even walk. Every nurse and technician I came in contact with remarked on how good my blood pressure was or how great my lungs looked on the x-ray or how ideal my EKG results were. The oncologist asked me some questions and then felt around on my neck and stomach before asking his nurse, "what else am I supposed to do" while explaining to me that "I don't normally see healthy people."
That day helped me see the enormity of the whole thing. For me it's not a big deal, but for someone else it is. My orientation even covered warnings against any type of dangerous activity like sky diving because if I put myself in a life threatening situation I am also risking the life of the patient who needs my donation. They talked about the point of no return where they would start prepping the patient for donation with high doses of chemo at which point a donation would be required for survival. They talked about sharing information with the patient and leaving the door open for future contact with this person. I can request an update on the patient and I'm not sure how I feel about that. I can't even imagine what this must be like from the patient's perspective so I think any communication needs to be up to him and on his terms. Sure, I'll be curious, but I think I would rather leave my info with the registry and let him make the first move if he chooses. I know there is also the possibility that he won't make it. There are no guarantees with cancer. It's weird, but I can honestly say that I care about this guy even though we've never met and I'd almost rather let myself assume that he's doing well.
So far I haven't told many people about my upcoming donation and I'm conflicted about that. On the one hand, I know there needs to be more awareness. Two years ago I didn't know what this was and now I am the one person on the registry picked to donate for this patient. How many willing people like me are out there who just don't know? I also know there is a lot of misinformation. Most people seem to only be familiar with the surgical donation process and have the impression that it comes with horrific pain which by the way isn't true. However, I am uncomfortable with the amount of credit the people I have told want to give me. Words like selfless, hero, life saver, etc. make me cringe. I know it's all well intentioned, but honestly the important message in my mind is how easy this was for me as a donor. Anyone could do this. I don't deserve any kind of accolade for having the right DNA markers. It was luck. When I consider what the patient must have experienced in his battle thus far and when I think about what lies ahead for him how can I not give up a few hours of my time to sit in a cushy chair and be hooked up to an IV?
After my session at the clinic Arlene took me across the street to the cancer center where I would complete my physical. It felt a little odd having Arlene babysit me all afternoon, but my physical included 4 different offices in different parts of the center so I was pretty thankful to have a guide who knew the way around. Also, they gave me a special note from the Marrow Registry that said I shouldn't pay for anything. My first stop was a pulmonary specialist's office where I had a chest x-ray. Next was a cardiovascular practice where I had an EKG. My third stop was a lab where I gave urine and of course more blood. Lastly, I met with an oncologist who I liked very much and only partly because he looked a little bit like Dumbledore. He even had the Harry Potter series in his waiting room so he must be an alright guy.
All in all the battery of testing was pretty humbling. Every waiting room was full of sick people. I was in a cancer center after all. I saw people with no hair, people carting oxygen tanks, and people too weak to even walk. Every nurse and technician I came in contact with remarked on how good my blood pressure was or how great my lungs looked on the x-ray or how ideal my EKG results were. The oncologist asked me some questions and then felt around on my neck and stomach before asking his nurse, "what else am I supposed to do" while explaining to me that "I don't normally see healthy people."
That day helped me see the enormity of the whole thing. For me it's not a big deal, but for someone else it is. My orientation even covered warnings against any type of dangerous activity like sky diving because if I put myself in a life threatening situation I am also risking the life of the patient who needs my donation. They talked about the point of no return where they would start prepping the patient for donation with high doses of chemo at which point a donation would be required for survival. They talked about sharing information with the patient and leaving the door open for future contact with this person. I can request an update on the patient and I'm not sure how I feel about that. I can't even imagine what this must be like from the patient's perspective so I think any communication needs to be up to him and on his terms. Sure, I'll be curious, but I think I would rather leave my info with the registry and let him make the first move if he chooses. I know there is also the possibility that he won't make it. There are no guarantees with cancer. It's weird, but I can honestly say that I care about this guy even though we've never met and I'd almost rather let myself assume that he's doing well.
So far I haven't told many people about my upcoming donation and I'm conflicted about that. On the one hand, I know there needs to be more awareness. Two years ago I didn't know what this was and now I am the one person on the registry picked to donate for this patient. How many willing people like me are out there who just don't know? I also know there is a lot of misinformation. Most people seem to only be familiar with the surgical donation process and have the impression that it comes with horrific pain which by the way isn't true. However, I am uncomfortable with the amount of credit the people I have told want to give me. Words like selfless, hero, life saver, etc. make me cringe. I know it's all well intentioned, but honestly the important message in my mind is how easy this was for me as a donor. Anyone could do this. I don't deserve any kind of accolade for having the right DNA markers. It was luck. When I consider what the patient must have experienced in his battle thus far and when I think about what lies ahead for him how can I not give up a few hours of my time to sit in a cushy chair and be hooked up to an IV?
How My Story Started
I found out about the marrow registry about two years ago when a high school classmate was in need of a donor. Mutual friends put the word out on facebook and registry drives were planned. I had an appointment to donate blood so at my next blood donation I asked to be swabbed for the marrow registry. I filled out a brief form with my contact info and let them stick a q-tip in my mouth. It took about two minutes of my time. Periodically I got emails reminding me to update my contact info for the registry which helped me remember to update my status when I was pregnant with my second child and temporarily ineligible for donation, but for the most part I didn't think about it for two years.
Then, I got a call. A sweet lady named Arlene called from my state blood institute to let me know that I had been identified as a possible match. They wanted to confirm that I was willing and to collect additional blood samples for further testing. At that point I felt like the odds of me being chosen as the one were probably slim so I didn't get too excited. Arlene emailed me an online self evaluation with the standard blood donor questions. Having never slept with a prostitute, injected IV drugs, or traveled to Europe in the 90's I passed with flying colors.
Additional Testing
When I showed up at the blood clinic to give the samples they were no less than delighted to see me which made me think that this kind of additional testing didn't happen as often as I had assumed. As I left the lady who collected my blood (not Arlene) thanked me for my willingness to continue the process and said something about how exciting it was for them to find someone who said yes. That really struck me so I asked if she got a lot of no's. She explained that sometimes people sign up and then aren't healthy enough to donate once called or sometimes people sign up to donate for a specific person, but are not willing to donate for a stranger and then there are people who just change their minds. That floored me. Someone who has already agreed to be a donor changes their mind or decides that they are not willing to donate for just anybody when they are told they are a match. I immediately imagined having that conversation with a potential donor and I am fairly certain that I would not be a good marrow center representative. I just can't imagine knowing that there is someone in the world who matches you like a special snowflake and they are dying. They can't be saved without your cells. You are the needle in the haystack, and you aren't interested. I can't even comprehend how anyone allows themselves to say no in that situation.
About a month went by and I heard nothing. The registry staff prepared me for the possibility that donation wasn't a sure thing. Maybe the patient's doctor decided to pursue a different course of action, maybe I wasn't the best match, maybe the patient wasn't healthy enough for donation. Privacy policies meant that they didn't know much and my only job was to wait and be ready. I was out running errands when I got the second call from Arlene. They wanted to schedule my donation and send me for the complete physical. I jotted details on a receipt I found in my car. My match was a 38 year old male with lymphoma. It's odd how easily you can personalize such vague information. My husband is 38 so immediately I thought of a family like mine and imagined how we would cope with an illness like that in our family. I wondered if he had kids and imagined how I might explain something like that to my own young children. I thought about the countless nights spent at the hospital and about my oldest child who gets clingy when daddy goes on a three day business trip.
Then, I got a call. A sweet lady named Arlene called from my state blood institute to let me know that I had been identified as a possible match. They wanted to confirm that I was willing and to collect additional blood samples for further testing. At that point I felt like the odds of me being chosen as the one were probably slim so I didn't get too excited. Arlene emailed me an online self evaluation with the standard blood donor questions. Having never slept with a prostitute, injected IV drugs, or traveled to Europe in the 90's I passed with flying colors.
Additional Testing
When I showed up at the blood clinic to give the samples they were no less than delighted to see me which made me think that this kind of additional testing didn't happen as often as I had assumed. As I left the lady who collected my blood (not Arlene) thanked me for my willingness to continue the process and said something about how exciting it was for them to find someone who said yes. That really struck me so I asked if she got a lot of no's. She explained that sometimes people sign up and then aren't healthy enough to donate once called or sometimes people sign up to donate for a specific person, but are not willing to donate for a stranger and then there are people who just change their minds. That floored me. Someone who has already agreed to be a donor changes their mind or decides that they are not willing to donate for just anybody when they are told they are a match. I immediately imagined having that conversation with a potential donor and I am fairly certain that I would not be a good marrow center representative. I just can't imagine knowing that there is someone in the world who matches you like a special snowflake and they are dying. They can't be saved without your cells. You are the needle in the haystack, and you aren't interested. I can't even comprehend how anyone allows themselves to say no in that situation.
About a month went by and I heard nothing. The registry staff prepared me for the possibility that donation wasn't a sure thing. Maybe the patient's doctor decided to pursue a different course of action, maybe I wasn't the best match, maybe the patient wasn't healthy enough for donation. Privacy policies meant that they didn't know much and my only job was to wait and be ready. I was out running errands when I got the second call from Arlene. They wanted to schedule my donation and send me for the complete physical. I jotted details on a receipt I found in my car. My match was a 38 year old male with lymphoma. It's odd how easily you can personalize such vague information. My husband is 38 so immediately I thought of a family like mine and imagined how we would cope with an illness like that in our family. I wondered if he had kids and imagined how I might explain something like that to my own young children. I thought about the countless nights spent at the hospital and about my oldest child who gets clingy when daddy goes on a three day business trip.
Monday, March 12, 2012
A little Background
I wanted to tell about my experience as a donor because it is such an easy way to help someone in need yet so many people don't know what stem cell donation is or how they can help. I didn't. I am certain there are other people like myself who would be willing to help if they were asked so I'm asking. Full disclosure here, I'm not a doctor, but this was what I learned based on my experience as a donor.
What is it?
Bone Marrow and blood stem cell transplants are sometimes needed to help patients with various types of blood diseases like leukemia, lymphoma, or sickle cell anemia. However, finding a match can be tough. According to the National Bone Marrow Registry about 10,000 patients per year need a donor and only half are able to find a match. That's 5,000 people who need a life saving donation that don't receive one. 70% of people who need a PBSC or bone marrow transplant do not have a match in their own family and must turn to strangers to find a donor.
Who can donate?
Anyone age 18-55 who is in good health could be a potential donor. Because a patient is most likely to find a match within their own race there is an especially critical need for minority donors.
How does it work?
Sometimes bone marrow is collected in an outpatient surgical procedure which removes marrow from your hip with a syringe. However, with today's medical advances a lot of times they can harvest the stem cells that come from your marrow with a procedure called PBSC or partial blood stem cell donation. PBSC donation is a lot like donating plasma and is very simple. I was a PBSC donor.
How do you sign up?
To get on the donor registry all you have to do is give a cheek swab. A couple swipes of a q-tip and they have everything they need to add you to the list. You may not ever be called, but you may get the opportunity to save a life.
Why donate?
A donation gives hope and a second chance. It means everything to the patient and their loved ones who are desperate for a way to fight the disease. All it really takes is a small donation of your time should be you lucky enough to be a match. It's amazing to think that such a small act can make such a difference.
What is it?
Bone Marrow and blood stem cell transplants are sometimes needed to help patients with various types of blood diseases like leukemia, lymphoma, or sickle cell anemia. However, finding a match can be tough. According to the National Bone Marrow Registry about 10,000 patients per year need a donor and only half are able to find a match. That's 5,000 people who need a life saving donation that don't receive one. 70% of people who need a PBSC or bone marrow transplant do not have a match in their own family and must turn to strangers to find a donor.
Who can donate?
Anyone age 18-55 who is in good health could be a potential donor. Because a patient is most likely to find a match within their own race there is an especially critical need for minority donors.
How does it work?
Sometimes bone marrow is collected in an outpatient surgical procedure which removes marrow from your hip with a syringe. However, with today's medical advances a lot of times they can harvest the stem cells that come from your marrow with a procedure called PBSC or partial blood stem cell donation. PBSC donation is a lot like donating plasma and is very simple. I was a PBSC donor.
How do you sign up?
To get on the donor registry all you have to do is give a cheek swab. A couple swipes of a q-tip and they have everything they need to add you to the list. You may not ever be called, but you may get the opportunity to save a life.
Why donate?
A donation gives hope and a second chance. It means everything to the patient and their loved ones who are desperate for a way to fight the disease. All it really takes is a small donation of your time should be you lucky enough to be a match. It's amazing to think that such a small act can make such a difference.
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