Recovery Day 3

So this morning I woke up feeling pretty good. I planned on heading back to work today, which should be no big deal as I sit at a computer most of the day. I got a call from DKMS asking how I was feeling and thanking me again for what I've done. I did find out that my donation went to France and that the transplant went well. That also brought some bad news. France does not ever allow donors and patients to know who each other are. I will never find out who they are, and they will never know who I am. I can communicate anonymously and that's it. While this did make me very sad, it would not change what I've done, I would do this again and again no matter what. They said that it would be about a month before I can get my first update on how my recipient is doing, so that will be a very long wait for me.

I went in to work and thought I would be fine, but a few hours in I started feeling dizzy, nauseous and light headed. It was strange, because I have not felt like this at all through this whole process. I laid down for a while then drove home and slept. I still have a slight headache and feel exhausted again. So much for feeling 100% today! Maybe tomorrow or Saturday.

Recovery day 2

My first full day home. I didn't sleep in like I thought I would, woke up around 7:30, but that would have been 8:30 D.C. time, so I can understand. I have been thinking of my recipient a lot today. Going through my mind about the transplant, and how they might be feeling. I will be very anxious to get updates from DKMS on the progress.

I felt really good early today, hardly any fatigue and very little aches. Went out for lunch with my wife, and then in the evening I went to the store to grocery shop. About halfway through that, I started feeling a lot of pain in my lower back again and feeling very tired. Maybe because I was up a lot or I tried to do too much, but it wiped me out by 8:00. I'm sure I'll continue to feel better each day, I thought I was close to 100% today but now realize I was not.

Quick update

At the airport waiting to leave, but I stopped by the hospital before we left the hotel and spoke to my nurse. She informed me that my donation arrived safely! I was so happy to hear that, it just made my day. She was so nice, she even mentioned that she thought about me this morning when she woke up. She knew we were meeting Senator Cruz and since it started snowing this morning she was worried we would not be able to see him. 

Last day in Washington D.C.

I woke up this morning at about 6:45am, and immediately thought of my recipient. I imagined my stem cells arriving and the process starting for them. I am praying for success in the next couple of weeks for engraftment to take place and things to really start moving for them. Engraftment is when the new blood-forming cells start to grow and make healthy blood stem cells that show up in their blood. They are most vulnerable to infection during this time. For patients who receive marrow or peripheral blood stem cells (PBSC), engraftment can occur as early as 10 days after transplant but is more common around 14-20 days.

I also thought about how tough it's going to be for the first year until I can request to find out who they are, if they want to know who I am. With them being an international patient, I need to find out if the same rules apply where they are, as I've heard some countries have different waiting periods before allowing anonymity to be broken. They are going to weigh heavy on my mind for a while, hoping that they will recover completely. I will be able to get updates through DKMS on milestones, like engraftment and progress, but it will be very minimal information.

Our last day in Washington D.C. and it's snowing! It's not sticking anywhere, so I'm not worried about getting out of here tonight, but it sure makes an interesting view compared to the weekend. Here is the South end of the Capitol Building with snow, and you can see the flag on top, which means the House is in session.

We got to briefly meet Senator Cruz this morning and he thanked me for my donation, and I thanked him for his service. We had lunch at the Capitol visitors center, then headed back to the hotel to wait for the car to the airport. 

My symptoms today are still present, but I am feeling much better. I still have lower back pain, and headache, but it's definitely getting better as the day goes on. I can't wait to get home and give my kids a big hug.

All Done!

When they did the blood draw this morning part of that was to test how many stem cells were in my blood after the days of injections. They were super happy with the amount that my body produced, about 8 times more than needed! This was good news in many ways, it allowed them to collect extra in case it's needed for the patient, but it also meant I spent less time on the apherisis machine. Instead of 4 to 6 hours, I was on there just under three hours! Everything went smoothly. I did get a little tingling in my fingers and toes, but they gave me some calcium and it went away pretty quick. 

This is me hooked up to the apherisis machine. The blood goes in from my left arm, and a centrifuge separates the stem cells and plasma and the remaining blood returns in my right arm. They will actually mix the plasma and stem cells for transportation, as the plasma is necessary to keep the stem cells healthy and not clot up.

And here I am after everything is done. The plasma is the yellow on the left, and the stem cells in the red. Right after taking this picture, a courier took them both in a little red igloo cooler to be flown to the patient.

My wife on the far right, and the wonderful staff at Georgetown University Hospital. They took wonderful care of me through the whole process.

Since I finished early, I stopped to support a fellow donor next to me.

Time for some rest now, then will go out for dinner later. I'll write up more on the process and my thoughts later.

D-Day!!!! (Donation Day)

Woke up this morning early and met the hospital staff in the lobby, got my last round of shots and my return line put in. They took another nine tubes of blood to check my platelets, stem cells and white blood cell count. 

They explained the whole process to me then hooked me up to the apherisis machine. I'll be here for a while so I'll update again later.

Day four, part two

Well, the nurse this morning said that the shots today would get to me, and she was right. For most of the day, I didn't really know if I felt any more pain anywhere, but overall I just felt wiped out. My wife and I kind of knew that today was probably going to be a slow day so we didn't plan on anything in particular. After the injections, we walked to The Old Stone House, which is the only pre-Revolutionary War building in the area.

After this we walked down to the Potomac river and had brunch at Chadwicks, and then saw Divergent at the AMC. Even though we didn't walk nearly as much as yesterday, and sat in the theater, I still felt pretty worn out. We had an early dinner, came back to the hotel and just watched Netflix for a while and going to sleep early tonight, around 10:00. 

I have been taking Calcium supplements for almost a week now, and will be bringing the bottle with me tomorrow. I'll get up around 5:45 in the morning to get all my things together, and meet the staff in the lobby at 7:00. I'm getting just a little nervous, not about doing the donation, but just having the needles in my arms for hours. I think once it gets started, I'll be fine. 

Thinking again of the recipient and what might be going on while I'm hooked up to the machine. I will be so happy when I see my stem cells in the bag, going away with the courier and on the way to help them. 

Day four, part one...

Just received the fourth round of Filgrastim injections. The nurse asked the usual questions for any symptoms, and when I mentioned how much walking we did yesterday she was very surprised that I was out and about that much on day three. I did mention that I did have to slow down at times, and that I was uncomfortable here and there, but it was all worth it. She did say that by the end of the day today I may be feeling a little worse. I still feel discomfort today in my lower back, but the area that has been the worst for me is just behind my ears, where the bone is at the base of my skull. This area has been throbbing the most. The area that they have been giving the injections was a little sensitive by the end of the day yesterday, and is still sore today.

My recipient has been on my mind yesterday and today. I can't imagine what they are going through, and hope that my donation brings them healing and comfort.

I will update again later today. Here are a couple of pictures I took yesterday. One is the ceiling in the Library of Congress, and the other is just a scene I captured at the Vietnam Memorial Wall.

Day three, part two...

So it's 8pm on day three of the injections. As I mentioned earlier, I did feel some pain in my lower back and a little in my head, but that was about it. Well, we walked for miles today to visit the Lincoln memorial, Vietnam memorial, Capitol Building tour, Library of Congress, Smithsonian American History museum and the Smithsonian Museum of Natural History. For the most part, while I was walking, my lower back felt fine, only occasionally reminding me of why I'm here! There were a few times today that I had to slow down and sit down for a bit. When I sat down, I would really feel the throbbing pain through my back and the lower back part of my head. It really caught up to me by around 4 or 5, slowing me down considerably. It wasn't bad enough to make me want to crawl in bed, but it was very uncomfortable at times. I can remember when I sat down at the Vietnam Memorial wall to get a pencil rubbing of some names, and my head started throbbing really bad. 

We had dinner near the hotel and are now laying in bed and feeling very tired. What is difficult is to try to distinguish what is sore from the Filgrastim injections and what is sore from the miles and miles of walking. We did take the train and bus back to the hotel at the end of the day, as we knew we would not be in the mood to walk the three mile hike back.

Tomorrow the weather is going to be quite a bit colder than today, and I'll have to see how I'm feeling to determine if we will go out and do much. I have a feeling we will not do a whole lot, and just get a bunch of rest. We may go see Divergent at the theaters, that would not be too hard on me.

It was very cool seeing so many historical things today. Also standing in the places where so much history for our country was made was just awesome. Time for some rest, one more day then it's time for the donation!

Day three, part one.

Woke up this morning with a dull throbbing pain in my lower back, so that means the Filgrastim is working! Every now and then it bothers me, but then it goes away so it's really not too bad. I get a little throbbing in my head too, that coincides with the back pain. I took two extra strength Tylenol, and will take those every 5 or 6 hours. They have said to not take too many Tylenol if the pain is not going away, they would prefer I take something with codeine instead. I opted to just see how I do today with only Tylenol. The nurse did say that being out and about will help with the pain, so we are walking back to the Capitol Building and Smithsonian museums today, but will take the train and bus back to Georgetown at the end of the day.

They just gave me day three shots, and I will update again at the end of the day to see how I'm feeling. 

Filgrastim, round two

After arriving at Dulles airport, I went straight to Georgetown University Hospital for the second round of Filgrastim injections. After the brief pain yesterday, I was not looking forward to the shots. I was so relieved when the first shot was overwith and realized that they really know what they are doing here, because I didn't feel a moment of pain! They went much slower with the injection, which was the key to it being pain free. The second shot went in my other arm and it was as easy as the first. I asked if spending two and a half days walking around the city was going to cause the Filgrastim side effects to be any worse, and they said that actually it would help some. My wife and I left the hospital and walked many miles. I was so happy to be able to see the Constitution, the Declaration of Independence, and the Bill of Rights at the National Archives. We went by the White House, the Treasury and many other historical buildings. After dinner off Wisconsin Avenue in Georgetown, I am now in the hotel resting. I am a little sore, but I think it's more from all the walking than the Filgrastim. So far I can't really discern if any of the aches I have can be attributed to the injections. I'm sure it will change for day 3 and 4, but I'm feeling pretty good about things right now.

Tomorrow will be a big day, a lot of walking again, Capitol Building tour, Smithsonian Air and Space Museum, Lincoln Memorial and whatever else we can fit in. But before all of that, I'll get day three injections at 9:00am. We'll see how I feel tomorrow night!

For Real This Time....

Here I am at the airport, ready to go to Georgetown University Hospital. Those of you that are Quentin Tarantino fans may have caught my movie reference.... Dry Run last week, then For Real This Time.... Jackie Brown. Anyway, it is for real now. I didn't really feel any side effects from the Filgrastim shots yesterday. I did have a slight headache, but not really different from any other day. I don't think it was from the shots, just usual end of day-ready for bed tired.

Executive Car Service picked us up in a limo at our house this morning, so nice to not have to worry about parking or getting a ride or anything. Once I arrive at the hotel I have to drop in downstairs at the hospital and get my second round of shots. When that's done we'll wander off to find some lunch in the area, then probably head over to the White House, Lincoln Memorial and other sight seeing.

I hope my recipient is doing well. I thought about them quite a bit yesterday and this morning. I hope they have some comfort in knowing that help is on the way. I'm sure they are nervous and their family is worried about the whole process, and once my donation is complete and they receive it, maybe they will begin to cheer up. More later....

First shot of Filgrastim (Neupogen)

Well I just had the first Filgrastim injection today. It was actually two shots, one in each arm. I was a little surprised, it did burn quite a bit as it went in! It felt like a little torch blowing a flame on my arm. But the pain went away immediately after the shot was done.

Before the injection...

Prior to the injections, they did my vital signs and surprisingly my blood pressure was a little higher than normal, maybe I was a little nervous? They took some blood, just one tube this time. This will get sent off to a lab to get a report of my white blood cell and platelet levels prior to the injections. They will repeat this after the last injection on Monday to see how much has changed.


Second shot goes in... my wife said I had my 'fake smile' on. I was wincing a little!

The shots didn't take as long as I thought, even though she did go slowly with the injection. So it was all over pretty quick. There were little bumps where the Filgrastim went in, but after about an hour it was normal again.

after the shots, waiting for any reactions

After both shots were complete, it was time to just sit and wait. They checked for any redness around the injection site, one arm was a little red while the other was fine. They asked if I felt hot or dizzy or nauseous, but I felt fine. After about 30 minutes or so, they sent me on my way.

Overall not too bad. Tomorrow morning we fly to Washington, D.C. and check in at Georgetown University Hotel, then I'll get the second round of shots as soon as I arrive. Then we'll head out for lunch and explore the town! So excited that the time is finally here and that I'll be donating!

Filgrastim has arrived

The first dose of Filgrastim has arrived today. They sent it overnight, and has everything needed to give the first injection. Actually, I think I mentioned, it will be two injections. So two needles and two bottles arrived today.

The filgrastim (Neupogen) has arrived!

I have to keep the filgrastim in the fridge until my first shot Thursday. For some reason, my primary care physician has decided not to administer the first injection, but no worries, there is a medical place about a mile from my house (much closer than my PCP) that will be doing it instead. Prior to the injection, they will draw blood (again!) to get a baseline of my white cell count, platelets, and then check vital signs. For days 2, 3 and 4 of the injections, they will only do vital signs each day but then on day 5, the day of the donation, they will do another blood sample to see how effective the filgrastim has been. It's really starting to sink in now, that I'm getting ready to save a life. 

I've been taking calcium supplements for the last couple of days and will continue to take them through the donation. The reason for this is that during the donation, there will be an anticoagulant mixed in my blood, which can cause dizziness or tingling in the fingertips and mouth area. If not treated, the tingling will eventually turn into cramps. Calcium is given to offset the reactions of the anticoagulant. The nurse at the hospital during my physical said it's a good idea to start taking the calcium supplements about the same time you start the filgrastim injections, but I figured I might as well get a good head start!

Once the injections begin on Thursday, I'll be running daily updates on the blog through the donation and for a few days after. I want to do this to document how I feel each day, so that anyone that is contemplating doing this will know exactly what the experience may be like. This really helped ease my mind when I was first notified that I was a match, to know what to expect, and how different people felt when taking the filgrastim shots. Most people say they do get aches and pains, and headaches, but I'm hoping that it will be minimal for me, and that I will still be able to visit areas in Washington D.C. with my wife for a couple days prior to the donation. From what I have seen, the 3rd and 4th days are the roughest, with the 4th day seeming to be the worst. The 5th day I will get a shot early but then immediately be hooked up to the apheresis machine for the donation, and lay all day so I don't anticipate feeling any worse that day. 

One last day of getting everything in order tomorrow. Still have to finalize transportation to the airport Friday morning, as well as schedule the exact time of the injection on Thursday. The coordinator at DKMS still has to send me information on who to see about getting my daily shots once I arrive at Georgetown University Hospital on Friday. I believe it's all been arranged, but they just need to send me the itinerary. The people at DKMS have been wonderful through this whole thing. Which brings me to something else I should mention..... my job. Most of my friends and family that read this know I work for Microsoft. When I mentioned to my manager that I was a match for someone, I have received nothing but support the whole way. I never had to worry about taking the time off to do this, and I have several colleagues at work that have moved schedules around to cover my shift and workload while I will be out. They have all been wonderful, have and will be covering for me without any complaints. They know the importance of what I'm doing and I can't say enough of how great it is to work for a company and with colleagues that support you 100% for something like this.

Proud Dad

While I was discussing the donation with my wife last night, my 12 year old daughter chimed in while working on her homework.... "I hope I get to do that some day!"

I hope so too, sweetie! I have a feeling she'll be registering when she is 18.

What are the odds?

According to Bone Marrow Donors Worldwide (BMDW is the continuing effort to collect the HLA phenotypes and other relevant data of volunteer stem cell donors, and is responsible for the coordination of their worldwide distribution) the current number of donors and cord blood units in the BMDW database is: 23,577,584

Participants in this database consist of 73 stem cell donor registries from 52 countries. During the early discussions with DKMS I discovered that I was the only person that matched out of all of the registered donors.

I was telling someone at church yesterday that I feel kind of strange when people say how wonderful it is what I'm doing, when I didn't really do anything special. I am not like doctors that went through years of education and training, or an athlete that spends hours a day training.... I didn't do anything in particular to make my body match this person, I just basically happened to be a lucky match! All I did was exist! 

Plane tickets and hotel reservations were taken care of today. I'm getting more excited as the donation draws closer. There was a beautiful sunset today, and it made me think of the patient, wherever they are, looking up at the same sky. They probably started the process of chemo today. I'm praying that the hope of my donation will keep them strong through the pain. I wish I could send a message to them to hang in there, that I'm doing what I can.

Good News!

The final blood tests are back, and everything is good! They are working on the clearance documents and once all of that is wrapped up everything will be scheduled. One week from today I begin the filgrastim injections. While at the hospital on Tuesday, they did tell me that since they are subcutaneous injections which are administered just under the skin, that it will sting a little. They also said that due to the amount of the injection and the fact that they are kept refrigerated, this will cause it to sting too. There will be two shots, because the amount they give me is too much to fit in one needle. They suggested asking my doctor to let it sit at room temperature for about 5 minutes before administering, and to push it in very slowly to help reduce the amount of pain. I must admit, I'm a little nervous about getting these shots, but I'm sure it won't be as bad as I'm imagining it will be. Plus, I keep telling myself it's nothing compared to what the patient is going through.

I studied really hard for the physical exam and it paid off!

I arrived in Washington D.C. yesterday and was greeted by a nice gentleman from Pakistan that drove me to the hotel in a very comfortable Lincoln. This was really nice not having to worry about a taxi to and from the hotel.

The hotel was kind enough to check me in even though I was about 4 hours early. I immediately walked about a mile to get lunch, enjoying looking at the area of Georgetown as I walked. I really liked the buildings and the detail in the architecture.

After lunch, I was only another mile and a half from the White House, so I figured why not, and walked there enjoying more of the scenery along the way. At the White House, there was some protest going on, which was interesting. People chanting and yelling with a megaphone at Obama. 

I walked back to the hotel and was pretty much done for the day.

Exam Day: Woke up early and had breakfast down in the Starbucks on campus. At 9:00 I met someone from the hospital and they took me over for my physical exam. Sucking more blood out of me like Dracula, they took 11 tubes this time (this makes 21 tubes total so far) and checked glucose, platelets, potassium, and three pages of acronyms that I don't remember what they mean now.... they said all were normal to excellent. One final check again for diseases and the donation will officially be scheduled. It will take about 2 or 3 days to get those last results. All previous blood work was fine, so unless I picked up something in the last couple weeks (don't think so!) then I expect this last check to be fine as well. They also did UA to check ketones and other stuff, and said that everything looked good.

Then they did an EKG and I asked what they were looking for here. They said that they need to be sure that the heart muscles are functioning well and that the valves are closing properly. All of this is to know that your body will perform well when hooked up to the machine for the donation. He went into detail about other things they were needing to see, but I already forgot what the names of things were.

They said my heart was working great! As I mentioned before, a great thing about going through this process is finding out exactly what condition your body is in.

I was able to find out that the patient that I'm helping is international. This makes me want to know even more about who they are and where they are from. They also told me that my match was 9 out of 10 markers. Human leukocyte antigen (HLA) typing is used to match donors with patients. This is not the same as ABO blood typing. HLA is a protein – or marker – found on most cells in your body. Your immune system uses HLA markers to know which cells belong in your body and which do not. I asked what is acceptable, and they said typically doctors would prefer at least 8 out of 10 markers to match, so I said 9 is ok then and they replied, 9 is more than just ok, it's great.

They discussed with more detail about the procedure and the filgrastim injections leading up to the donation. Most people will feel aches in the pelvic area and sometimes clavical as these areas have higher concentrations of stem cells. They informed me to keep an eye on any pains in the left rib cage area where my spleen is. I had read quite a bit already about this whole process and was familiar with limited cases of enlarged spleen due to the filgrastim injections. They said 3 patients out of over 20,000 donations had this issue, and all were admitted and returned to normal health. I don't think I'm worried about it, but it's good to know anything that I should be looking out for.

So then I returned home that evening and will begin the injections in just 9 more days, as long as the last lab results look good. Still very much looking forward to doing this. Everyone at the hospital were very nice and understand that it's a special thing to be matched, and that it's also a good thing for someone to go through with the donation. I just don't see why someone would not donate if they were found to match someone. Stay tuned, more updates soon!

Dry Run

So today is what feels like a dry run.... Quick overnight trip to Washington D.C. for my physical exam, EKG and chest X-Ray, then immediately back home. I'll be taking the same flight in just 11 more days for the donation. I travel alone today, but the next trip Stephanie will be joining me. It's really starting to get exciting now, thinking of the whole process coming up. I'm hoping that the patient that I'm helping is doing well and prepared for what is to come in the next few days. They will begin the process of intensive chemotherapy and radiation to completely kill all bone marrow leaving them with no immune system at all. For some strange reason, at this stage of the donation, the quote from Star Wars keeps going through my head, "Help me Obi Wan Kenobi, you're my only hope". I am literally the last person on Earth that can save them, and I'm so happy to be the one that can do it. I feel no pressure or obligation to do this, just the inner peace of knowing that I'm doing the right thing.

I've booked an early flight today so that I can spend the day sight-seeing, then the exam will be tomorrow morning.

Visit with my doctor

On my way to work today I stopped and had a visit with my primary care physician to discuss some things and asked about the filgrastim injections. He was a little familiar with the process and did not have any concerns at all. He will actually be the one to administer the first injection and keep me under observation to make sure I don't have any allergic reaction or other issues.

I contacted my coordinator from Delete Blood Cancer and they have made the flight and hotel arrangements for my upcoming physical next week. I'm getting excited to get the next steps done in this process. During the physical they will do another blood test to ensure I am still disease-free, as well as some testing to ensure I am healthy and will not have any issues during the donation process. 

I did get some sad news today, I had hoped to visit the White House during my short time in Washington, D.C., but you have to submit a request from a Senator well in advance for a tour. Since all of this happened so quickly I was not able to get on the list as March is already fully booked up. Senator Cornyn did get me signed up for a tour of the Capitol building though, so that will be cool. I will also get to have coffee with Senator Cruz the day after my donation before heading back to Texas. 

 

Me killing time waiting to see the doctor today!

He asked my opinion about the Surface and said there were features that he really liked.