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Post Donation Thoughts

Well, it’s been almost two weeks since the donation, so I thought I’d give a little update on how I’ve been recovering.  My mom made me a couple smaller pillows that fit perfectly behind my back in chairs to give me some support, and those have been a life-saver in the past couple of weeks.  When we got home on Tuesday afternoon we got me settled into a big over-sized chair with an ottoman in my living room with one of those pillows behind my back.  Pretty soon after we got home my good friend and coworker came over with a card, flowers and a little gift from all my coworkers.  I also have flowers from Cole waiting for me when I got home.  What can I say?  I’m a pretty lucky girl!  That night Mom and Cole watched and I “watched” (aka slept through 95%) of a movie.  The hardest part of that night was walking up the stairs.  My bedroom is upstairs and although my brother would’ve let me stay in his room, I really wanted to sleep in my own bed.  So Cole helped me walk up the stairs, which took over five minutes.  It took a few days before I was able to walk upstairs by myself.  The first night was pretty rough because I was trying to lay flat on my back, which was causing a lot of pressure and pain.  I tried sleeping on my stomach, but that was just as bad.  My bed is low to the ground, so when I needed to get up and go to the bathroom Cole had to get up and help me get out of bed.  I finally gave up on sleep about 6:30 in the morning and made Cole get up and help me walk downstairs.  Poor guy.  He really did so much for me and didn’t complain at all about anything.  It was much more comfortable to sit in the chair, so I was able to sleep some downstairs.  We also set up a bunch of pillows in my bed so I was able to sleep in a more sitting up position, and I had to sleep like that for about 10 days before it was comfortable to sleep on my back again.

That day Janis came over to check on me and brought me a heating pad and ice/heat pack which has helped so much, and she also got me a new set of sheets which are so soft and comfy.  One of my neighbors also stopped by and was talking to my mom while she was outside and after my mom told her that I had just donated bone marrow she went out and got me a huge bouquet of flowers.  I have been so overwhelmed with all the love and support that everyone has given me throughout this whole process.  I didn’t donate bone marrow for the recognition, attention or gifts, but I appreciate everything that everyone has done for me.

I basically spent the rest of the week and weekend relaxing and napping in the chair with intermittent adventures outside, walking around my house and “supervising” the projects my parents, brother, and Cole were doing in the yard.  We also went out for Cole’s brother’s girlfriend’s birthday (say that five times fast).  We went to dinner, and by the time we were leaving my back was killing me from sitting straight up and down in a booth for about an hour and half, but when we went back to their apartment I was able to kind of sit back on their couch and I was fine, but I was exhausted by the end of the night.  Nothing too bad, but I definitely wasn’t back to my normal self.  I was always tired because when they harvest bone marrow it makes you anemic until your body replaces the marrow that was removed.  I was really tired for the first week, which made my first couple of days back at work difficult, but I feel more energetic with every day that goes by.  I was also walking really slow after the surgery.  Like grandma slow.  That has gradually gotten better, but I still walk slow compared to before the harvest.  I took one of the little pillows my mom made me to work to put behind my back in my chair, but by the end of everyday my back was still pretty sore.  Hopefully that will continue to improve everyday too.  This weekend I was feeling good enough to go out with some friends Friday night, and then Cole and I went to a local art and music festival on Saturday, which was a lot of walking.  By the time we were ready to go home, my back was hurting pretty bad but I we went home and I took an ibuprofen and sat down for a little while and I was feeling much better by that afternoon.

So, two weeks after surgery I’m still not 100%,, but I’d say I’m probably 70-75% back to normal.  I’m still a little more fatigued than usual and my back is still pretty sore at the end of the day, but it hasn’t been a major inconvenience.  I can do pretty much everything I want to do, I’m just a little slower and I don’t stay out quite as late.  Next week I’m going to go back to the gym and walk on the treadmill and slowly work myself back up to my normal gym routine.  I’m sure in the next week I will start feeling even better, and I know I will be 100% recovered in no time!  A lot of people have asked me if I would donate again, and my answer is 100% yes!  Any side effects that I’ve had from the harvest, which have been minor anyway, are far outweighed by the fact that by doing this I have *hopefully* saved someone’s life.  And in the very least, if his body does not accept my marrow, I’ve at least given him a few extra months with his family.  I know several people have told me that they’ve decided to sign up for the registry after hearing about me donating bone marrow, which I think is awesome.  I’d love it if all of my friends signed up!  The more people that are on the registry, the more patients they are able to help.  You might never go on to donate, but you might end up being a patient’s only match and their only chance at survival.  Donating bone marrow is the easiest way to save someone life, and it’s something that pretty much everyone can do.  Click here to sign up and they’ll send you a cheek swab kit!

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Part VII- D-Day

The morning of the harvest we had to be at the hospital at 6 in the morning.  When we got there I went to check in and then waited for about 15 minutes for them to call me.  We basically went over my vital info (name, DOB, allergies, procedure) and they put my id wristband on me plus another “allergy” band and then I went back to sit down and wait some more.  A few minutes later someone else came to get me and take my vitals (temperature, blood pressure and pulse) and gave me my super attractive hospital gown then sent back to wait for a nurse to come take me to pre-op.  Within five minutes the nurse from pre-op came and took me, my mom, Cole and Janis (Cole’s godmother) back to pre-op.  I got into my hospital gown, gave yet another urine sample for a pregnancy test (this one was for anesthesia) and got into the hospital bed.  The pre-op nurse asked me several questions about my medical history and then told me several more people would be stopping by to go over more information.

First the nurse anesthetist came by and explained how she would be putting me under and had me sign the anesthesia consent forms.  Then the anesthesiologist came over to introduce himself and go over basically the same information the nurse anesthetist did.  Then the nurse liaison came by and introduced herself to my mom, Cole and Janis.  She is the one who kept them informed of everything that was going on during and after my surgery.  After that the nurse who assisted with the procedure came over to introduce herself and explain the procedure in detail.  Sharon, the NMDP nurse stopped by to check in on me too.  Finally Dr. Fay, the surgeon, came over and explained the procedure and asked if we had any questions.  Since we didn’t he headed out and the nurses finished getting me ready for the surgery.

I got to put on the super stylish hair net, and a nurse started an IV and gave me some “relaxing” meds.  The nurse who gave me the IV was asking if I knew the patient I was donating marrow to.  I told her I did not,  and I was explaining to her about the Be the Match Program and she told me she was going to request a cheek swab kit that day!  I think it’s pretty awesome that I’ve been able to tell people about Be the Match who may never have heard about it if it wasn’t from me.  Anyway, after I got the happy meds in my IV all I remember is saying bye to my family and being wheeled down to the operating room.  I vaguely remember someone putting a mask on my face and asking me count down from 10, but the next thing I really remember is waking up in the recovery room.

When I was waking up from anesthesia all I remember is really really wanting to rub my eyes, but they would NOT let me.  I’m still not sure why.  I would try to rub my eyes and one of the nurses would stop me, then I’d wait for them to walk away and then try to sneak my hands up and rub my eyes again.  Finally, a nurse got a piece of gauze and rubbed them lightly for me, but apparently I was causing a little bit of a scene because for the rest of the time that I was in recovery different nurses kept walking by and asking if my eyes were better.  Hopefully that’s the only embarrassing thing I did/said.  When I started becoming more alert I realized I was in quite a bit of pain so the nurse gave me some Dilaudid which was amazing and worked in less than 5 minutes.  My throat also hurt quite a bit from the breathing tube, so the nurse fed me some ice chips, which was really nice.  While I was in the recovery room my mom, Cole and Janis were able to come back and see me for a few minutes.  Dr. Fay also stopped by and with my bone marrow before it was taken to the courier who would take it to the patient’s doctor.  They harvested 4 units of marrow through 2 incisions in each hip, and he said they got more than enough marrow.

Once a room was available, they moved me into a private recovery room for the rest of the day.  I got to my room about 10:30, and was on strict bed rest until 2.  I was feeling okay until I tried to eat a muffin and drink some juice, and then I got really nauseous.  The nurse gave me some anti-nausea medication through my IV and I felt better right away.  Veronica, Ashley and the other Donor Coordinator at Baylor stopped by to check on me and to give me a little donation gift.  My throat was still hurting and everyone else was getting hungry, so they went to get lunch and brought me back an ice-cream popsicle to sooth my throat.  Around that time the pain in my back started coming back so the nurse gave me a pain pill (no more Dilaudid 😦 ).  The first pain pill didn’t work, so she gave me another which did the trick.  By then it was a little after 2, so I was able to get up (very slowly) and go to the bathroom (very very slowly).  Since I passed all the tests (pain under control, able to eat, able to go to the bathroom) I was able to leave, so the nurse put in the order for transport to come with a wheelchair and wheel me out to the car and I was out of there by about 3:30.

All in all, the procedure itself was not nearly as bad as I was expecting.  I was expecting to be in severe pain, but the pain has really been bearable.  My back has been really sore, more sore than I was expecting, but the acute pain has been much better than anything I expected.  Next time, I’ll talk more about the recovery process though.  I was surprised at how quick the procedure went, and how quickly I was able to be discharged.  Everyone involved was just so nice and helpful and I would donate again in a heartbeat, no questions asked.

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Part VI- The Day Before the Harvest

Well the big day is almost here. Tomorrow morning at 6am I will be going through the admission process at Baylor. They’ll take all my vitals, get me into a super-attractive hospital gown, and I’ll meet with the anesthesiologist and sign the final consent form. The procedure will start at 7:30, but it will take about 20 minutes for them to put me under before they can actually start the harvest.  After that I’ll be in recovery until they have a free room then if all goes well I should be discharged between 4-6 pm.  Sounds pretty easy.

Today I went through the pre-admission process.  I met with Sharon and she showed me where to go tomorrow morning to admit. Then we went to sign some hipaa and consent forms for the hospital and I had all my vitals taken again. Finally I had more blood drawn and gave a urine sample so they could run some final tests. It took a little over an hour for all of that, so we went straight to dinner then came to the hotel for the night.

I’m a little nervous about the procedure but I’m excited that the day is finally here!  There’s no guarantee that the patient’s body will accept my marrow, but I’m optimistic that my marrow will help him make a full recovery and give him many more happy years with his family. Please keep him in your thoughts and prayers tomorrow and in the coming weeks.

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Part V- Let’s get Physical (Physical)

I’m sorry if that song is stuck in your head all day now.  If it’s any consolation, it will be stuck in my head too so we’re suffering through this together. 

Before my physical, Veronica (my Donor Coordinator) sent me an informational packet about being a bone marrow donor, an informational DVD and some paperwork to have completed before my appointment.  My physical took place at the Cancer Center at the Baylor Hospital in Downtown Dallas.  Cole took off work a few hours early so that he could come with me.  I was planning on going by myself, but the DVD she sent me said you should bring someone with you so Cole was the lucky winner of that prize.  When we got the hospital I called Veronica and she met me down in the lobby along with Ashley who was training with Veronica (it was her first week and I was her first donor).  She took us up to the outpatient center where she had me fill out some more paperwork and consent forms for research studies they are conducting on bone marrow transplants.  While I was filling out the paperwork she answered some of the questions that I had.  Once they were ready, we all went back and I had all the usual vitals taken (blood pressure, pulse, temperature, height and everyone’s favorite, weight).  After that I had about 10 vials of blood drawn, I gave a urine sample and they took me back to the room where we waited for the doctor to come in and see me.  We had to wait a while because Dr. Fay really likes to have personal conversations with his patients.  Veronica kept apologizing that he was taking so long, but I didn’t mind.  If I had cancer, or if one of my family members or friends had cancer, I would want a doctor that really took the time with his patients.  I’m perfectly healthy (knock on wood); I don’t mind having to wait if that means that his actual patients are getting some of their questions answered.   Once Dr. Fay came in we briefly went over my health history form again.  I’m allergic to Sulfa drugs, which I put on the allergies list, and he said that they would have to be sure to tell the patient’s doctor because Septra and Bactrim are regularly used in the patient’s post-transplant treatment and he once he gets my marrow he will have my immune system, so that means whatever I’m allergic to he will also be allergic too.  Isn’t that crazy?!  Then Dr. Fay explained to me the procedure in detail.  He said I would be put under general anesthesia (so I won’t be awake during the procedure) and they’ll flip me over on my stomach, make a couple incisions then insert the hollow needle into my hip bone in several places and remove the marrow.  He said the whole procedure would take 30-45 minutes and then I’d be back in recovery.  He explained the possible complications (which were mostly from the anesthesia), listened to me breath a few times, and then headed on out to see his other patients.  At some point during the appointment I found out that not only am I the best match for this patient, but I am a perfect match and the patient’s only match.  It’s kind of crazy to think that I am the only person that can (hopefully) save this man’s life.

I still had a few more things to do after my appointment with Dr. Fay, so Veronica took me down a floor to get my EKG and chest x-ray.  Those were pretty uneventful, except that they had to do the EKG twice because I was so nervous that I was unconsciously tensing my arms, which was causing a poor quality reading.  Once I calmed down she was able to do the reading again and everything came out normal.  It may seem strange that they require an EKG and chest x-ray in order to donate bone marrow, but they want to make sure that there aren’t going to be any complications for the donor during or after the donation process.  The Donor Search Coordinator and the doctors and nurses that are working with the donor have nothing to do with the patient or the patient’s treatment, they are 100% looking out for the best interest of the donor.

After the chest x-ray, Veronica told me that they should have all the results by Monday and if any of the results disqualified me from donating the doctor would call me; otherwise she would call me and let me know that everything was clear for the donation.  She ended up not getting final clearance from Dr. Fay until a week after my physical, but obviously everything was okay with my lab work, EKG and chest x-ray.  She told me that the patient’s doctor was requesting a final clearance between April 8th and 11th so that the patient could start his pre-donation treatment and in order to get a final clearance I had to have another clear pregnancy test on one of those dates.  So, we scheduled a home health aid to come out to my office on April 9th to draw another vial of blood for yet another pregnancy test.  Like I said before, I’ve had more pregnancy tests in the past 2 months than I have in my entire life.

Veronica also offered to get me a hotel room for the night before the donation so that I wouldn’t have to worry about traffic the morning of the donation, and so I wouldn’t have to wake up quite as early, since I have to be at the hospital at 6 am.  Since both my mom and Cole will be with me, and the NMDP will not pay for two hotel rooms,  they offered to get me a suite at  hotel down by the hospital.  Like I said, I can’t believe how accommodating the entire NMDP program is throughout the entire process.  They will do everything and anything possible to make the process as easy as possible for the donor.

Tomorrow afternoon I have an appointment at the hospital to go through the pre-admission process and then Tuesday morning at 6 am I will be admitting to the hospital and the procedure will begin at 7:30.  Hopefully I’ll be out and in recovery by 8:30 and my marrow will be on its way to the patient (wherever he is).  Please keep the patient in your thoughts and prayers that his body will accept my marrow and he will make a full recovery.

 

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Part IV- You’re THE Match

After I had the confirmation blood work done I went on vacation and started a new job so my status as a potential match for this patient wasn’t my top focus.  I didn’t completely forget about it, but I figured it would be a while before I heard from anyone at the NMDP.  However, on a Friday night three weeks after I had the blood work done and two weeks after starting my new job I had a missed call and a voicemail from a San Francisco area code.  I have family who lives in that area, so I was a little nervous to listen to the voicemail.  It turns out it was Donor Search Coordinator from the NMDP.  In the message she left she said that I was identified as the best match for the patient and that his doctor was wanting to move forward with the donation.  It was about 9:30 in Texas (so 7:30) in California but she told me to call her back as soon as I got the message to let her know whether or not I was still interested in donating.  I didn’t even consider not going through with the donation, to me it wasn’t even an option.  I called her back right away.  Even though it sounded like she was out to dinner, she answered the phone immediately and I let her know I was definitely interested in going through with the donation.  Since she was out to dinner she asked if she could call me the next day to go over the details as well as go through another health history questionnaire.  At that point she let me know that the patient’s doctor was requesting a “traditional” bone marrow donation, where the doctor will make several incisions in my hip and extract the bone marrow from the hip bone using a hollow needle, and she gave me three dates the doctor was requesting the harvest to take place (all in early April).  Even though I was expecting to be asked to do a PBSC donation, where they filter out stem cells from my blood and return the rest of my blood to me (kind of like donating platelets), I let her know that I was still willing to go forward with the donation.  She did also say that they would have to fly me out to California because there wasn’t anywhere in my area that could handle the procedure.  I mentioned to her that I thought there were several hospitals within 30 minutes of me that were bone marrow transplant centers.  She said that they probably weren’t affiliated with the NMDP and that we could discuss it in more detail the next day.

As soon as I got off the phone with her I, being the self-proclaimed ‘Queen of Google,’ got online and found out that I was right and there were several hospitals in the DFW metroplex that are bone marrow transplant centers affiliated with the NMDP.  I then spent the rest of the night reading information on donating bone marrow (the traditional way).  This is when I started to realize that there really isn’t a lot of non-medical information about donating bone marrow, like donor stories or anything like that.

The next afternoon, Saturday, she called me back and said that she was going to transfer my case to someone in my area because she could “tell that it was important to me that I stay in Texas.”  I would not have had any problem traveling if it was necessary, but I didn’t see the point of the NMDP paying for me to fly to California and stay out there if there are several hospitals less than an hour from my house.  Anyway, I went over the health history questionnaire with her, which took about an hour.  This was the most in depth health questionnaire I’ve ever seen or heard of.  They ask you about everything you could possibly think of, and more.  For example: she asked me if I have any allergies, including environmental allergies and what kind of symptoms I have.  I told her the medication I’m allergic to, and I also told her that I’m allergic to cedar and I get “Cedar Fever”.  If you’re from Texas (especially Central Texas) you are well aware of Cedar Fever.  Apparently, people from San Francisco are not as well aware of this lovely phenomenon.  I spent at least 15 minutes describing to her exactly what kind of symptoms I get when I have Cedar Fever.  She thought it was quite fascinating.  I’d invite her to come to Texas during Cedar season and see how fascinating the thinks it is then.  Anyway, she told me that a Donor Search Coordinator from my area would be in contact with me Monday.

As I mentioned before, I had just started a new job so I didn’t have any vacation/PTO/sick time because I hadn’t been there for 90 days.  So, Monday morning I went in to talk to my manager about taking a few days off unpaid for the donation.  She was completely fine with it, which I knew she would be, and said I could have as much time off as I needed.  A few hours later Veronica, the Donor Search Coordinator from the NMDP at Baylor Hospital in downtown Dallas called me.  She explained that the next step in the process would be a work-up and physical to make sure I was healthy enough to donate and that my marrow wouldn’t pose any undue risks to the patient.  We originally scheduled the physical for March 18th and the harvest for April 9th, but that was changed because of the patient’s treatment plan. The physical has to be within one month of the donation, so we ended up doing the physical March 28th, and the harvest will happen April 23rd.

The most important point that I want to get across here, is that the NMDP is very very flexible and accommodating to the donor.  They want to make the process as easy and stress free for you as possible.  They want you to be able to donate, and they will do everything in their power to make it as easy for you as possible.  Veronica told me that the NMDP would reimburse me for the mileage between my house and the hospital for the donation and the harvest and that they would even reimburse me for any time I’d be missing from work due to the donation.  I was not expecting that at all.  I was planning on taking the time off unpaid because I felt very strongly about being able to go through with the donation.  Getting reimbursed for the time off is just an added, but much appreciated, bonus.  I can’t see why so many people don’t agree to go through with the donation with how hard the NMDP works to make the experience as easy and as comfortable as possible for the donor.

Next time, we’ll talk about the work up and physical.  I can’t believe it’s only one week until the harvest!

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Part III-You’re A Match… again

In February 2013 I was again contacted by a representative at Be the Match via e-mail letting me know that I was a preliminary match with a patient in need of a bone marrow transplant.  This e-mail seemed different than the first one I received.  It seemed more important and urgent.  They asked me to call them immediately, and I also found out a few hours later that they e-mailed my mom as well because I had her listed as a secondary contact.  I took a break from work right away and called them.  The representative that I spoke with let me know that the patient’s doctor was requesting additional testing as soon as possible so she needed to know if I was interested in getting blood work done to confirm that I was the best match for the patient.  I let her know that I was interested, so she set up an appointment at a lab for me two days later.  We also went over the same health history questionnaire that I completed back in October.  The lab appointment turned out to be a huge fiasco, but luckily everything worked out in the end.  I had scheduled the appointment for 7:30 am so I could still get to work on time.  When I got there I was informed that they had received a kit from the NMDP but it was not my kit.  The kits are labeled with donor numbers, so they couldn’t just use any kit that was there.  I called the donor rep I had been dealing with at the NMDP and she tracked the FedEx package and told me that it looked like it had been delayed due to a big winter storm, but it was set to be delivered that day.  The lab told me they usually get their FedEx deliveries around 9 or 9:30 so I said I would come back on my lunch break.  Luckily, I called the lab before my lunch and they told me that they did receive another kit from the NMDP but it wasn’t mine.  I called back the donor rep and after several minutes trying to figure out what happened to my kit.  It turned out that it was sent to another lab with the same name that was on the same street as the original lab I went to.  Luckily the other lab wasn’t too much farther from my office than the original one so I went on my lunch break and had 6-7 vials of blood drawn.  Since I did’t have an appointment I had to wait about 30 minutes before they could draw my blood, and then it took about 15 minutes for the actual blood draw itself.  It ended up taking about an hour and a half from the time I left the office to the time I got back.  Luckily, it was my last day working their so they didn’t care that I took an extra long lunch.  The lab sent the vials of my blood back to the NMDP so more tests could be run to determine if I was the best match for the patient.  There are 10 factors that they look at, and you have to match at least 8 to be able to donate.  They aren’t able to determine how good of a match a possible donor might be from the cheek swab sample, which is why they have to get a blood sample.  They also test for infectious diseases, other underlying conditions you might not be aware that you have, and also pregnancy (because pregnant women are not able to donate bone marrow).  True story: I have had more pregnancy tests done in the past 2 plus months than I have in my entire life.  Anyway, after my lab appointment the rep at the NMDP told me it could be several weeks to a couple months before I heard anything from them, but they would be in touch with me as soon as they had an update for me.

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Part II- You’re A Match

In early October 2012 I got an e-mail from a representative at Be the Match informing me that I was a potential match for a patient in need of a transplant and they requested that I call them at my earliest convenience.  I was at work so I took a break a couple hours later and spoke with a representative who informed me they were very early in the donation process for this patient but I was a preliminary match and they’d like to go over a health history questionnaire if I was still willing to donate.   I told her I was willing to continue moving forward, so we quickly went over the health information that she needed.  The questions she asked are basically the same as the questions they ask when you’re donating blood.  She told me that they’d be in contact with me if they needed anything else, but if I hadn’t heard from them in a couple months to assume that I would not be needed to donate to this patient.  I didn’t hear from the NMDP again until December of that year when they sent me an e-mail letting me know that either I was no longer being considered as a match for the patient or that the patient’s doctor had decided that a bone marrow transplant was no longer a viable treatment option for the patient.  Either way, I figured I would never be contacted by them again.  It’s a pretty rare occurrence to be a match with someone once, so I figured there was no way I’d be a match with anybody else.  As I’m sure you’ve figured out by now, that obviously was not the case.  Within a few months I was identified as preliminary match for another patient, which is where we’ll pick up next time!