It was probably about 5 or 6 years ago that I was at a blood drive and signed up for the bone marrow registry through Be The Match. I’d heard about bone marrow donation before, but didn’t know that much about it. I was told that about 75% of the donations were done by peripheral stem cell donation instead of the very painful bone marrow donation. There was something about the fact that I could possibly save someone’s life with just a little pain and inconvenience that made it a no-brainer. So, I signed up.
Fast forward to May of last year…
I got a call from the registry folks saying that I was a match for a woman with leukemia. They asked me if I was willing to do additional testing. They were going to test my health as well as verify the match.
Of course I could do that, no problem. I’ve given blood multiple times and have had lots of blood work done. Never had any problems, in fact, nurses always love how great and healthy my veins are.
After the tests I never heard anything further so I assumed that:
- They were not able to verify that I was a match or
- She was able to move forward with other treatment that was able to help her.
So I went on with my life. I kept training. I visited Disney World with my whole family. I moved across the country and settled in my new house. I prepared to check another bullet off my Bucket List by competing at Figure Universe in Ft. Lauderdale, FL.
In other words, I’ve had a crazy but completely amazing year.
Then the call came in May as I was getting close to Universe- the doctors for the patient I had been matched to were ready to move forward with the transplant.
Honestly, I was completely floored. I had assumed that the treatment for this woman had been successful and she was healthy by then. As it turned out, she had been fighting this whole time and nothing had worked for her. I couldn’t imagine what that must have been like for her and her family. She’s in her 50’s and I found myself wondering if she had kids, or grandkids even.
Was I willing to come in and do the donation now? Of course!
I had a physical on the 25th of June to verify that I was healthy enough to donate. Everything came back normal, as I expected. So the peripheral stem cell donation was set for the 21st of July. The donor advocates made it clear that after a certain point the patient would start going through her pre-operation procedures. If I changed my mind at the last minute, the delay could make her sick. If I cancelled, it could mean she would die. Yikes, no pressure.
I would start the Neupogen shots on Friday the 17th and those would go on for 5 days. The purpose of the Neupogen was to stimulate my body to create more white blood cells that could be harvested during the procedure on Tuesday the 21st. On top of being used for donation procedures, Neupogen is also given to cancer patients who either are about to start chemo or who just went through it to boost their immune system. During the transfusion, they would attach an access line to a vein in one arm to draw the blood. Then it would cycle through a machine to pull out the white blood cells and come back to me through a return line in a vein in the other arm. The whole procedure would take about 5 to 7 hours and I wouldn’t be able to move my access arm the whole time. The return arm would have limited movement (ie, I could pee in a bed pan…).
The side effects of the Neupogen were mainly bone pain. I did kind of feel like an arthritic old lady for a few days- my hips and shoulders ached and I had a sharp feeling in my ribs when I took too deep a breath or made a quick movement. Nothing that slowed me down too much- I even upped some of my weights, but just moved a little slower than usual. I couldn’t imagine being a cancer patient, who was already in pain, having to take that though. Just another reason that cancer sucks.
I went ahead and sent my kids to visit their grandparents so I didn’t have to worry about a sitter during my procedure- and I didn’t want them to worry about me. They flew via an unaccompanied minor flight for the first time. That was a little nerve wracking itself, but everything went well for them. In fact, I’ve already picked them up from their flight home and they had a great time.
So that’s the back story. Nothing irregular up to that point and I had no reason to believe that anything would go wrong during the procedure either.
Tuesday morning I got to the donation center and got my last dose of Neupogen. We then had to wait 45 mins for it to take effect.
It was finally time to get started. I have to admit that I’m not the biggest fan of needles and I wasn’t particularly excited for this, but I do believe in the program and in helping other people so I got myself mentally ready. The access line went in smoothly in my left arm- that was the arm I was not supposed to move at all for the entire time. Then the return line…
As the nurse got the return line in, I could feel things change. All of the sudden, the needle just stopped moving forward as if my veins themselves were tightening up around the needle. So she stopped that vein and tried another one. For a total of 4 veins. No dice.
By that time, the tightness had spread to my whole body. My blood pressure dropped to 70/40 and I felt like I was going to pass out. The nurses said I turned 50 shades of grey- the color not the guy- so they put more pillows under my feet and lowered my head. All of the sudden I felt a sharp pain in my left arm.
Once I started feeling better- like I wasn’t about to pass out- I asked about why my arm hurt. Apparently when they moved me the needle poked through the vein and caused it to burst. So we lost the access line.
This is a procedure that required two IV’s and my veins weren’t cooperating for one.
After I was back to normal, I heard them talking about trying the IV’s above the spots where previous attempts had failed. I wanted to get this procedure done, but at the thought of more needles, I could feel my veins closing and my heart beat faster. I just had a feeling it wasn’t going to work again.
We were left with two options:
- A full bone marrow donation that involved going into the bone, pulling out the marrow, and also involved quite a bit of pain and recovery time during which I wouldn’t be able to work out.
- A central line- which is a catheter installed in my neck using x-ray type equipment. They would be able to do both the access and return using that line so I would only need one.
Calling it off or delaying it any further wasn’t an option. I believed in the importance of the stem cell donation and couldn’t quit on it just because it got a little painful.
I picked the central line option so the nurses and donor reps went about trying to get that scheduled. It involved a radiologist, local anesthesia, and special equipment- all of which had to be reserved. I waited for a while until my rep thought she had got an answer- it would all be done the next day at another location. So I went home to try to get as much stuff done as I could. I wanted to work out, shower, and prep my food, as well as reschedule with a few of my clients.
About an hour after I got home, I got another call from my rep. The other plans had fallen through so I needed to get back as soon as I could to be admitted to the hospital. They would either try to get the central line in that afternoon or they would have me first in line for the procedure in the morning.
I hadn’t really had a chance to work out or shower yet since I had used the first little bit to clean up and get organized. I guess the workout wasn’t going to happen, but I still had time to grab a shower, pack food, and get organized.
I was back at the hospital with my computer, my Six Pack Bag full of food, and my clothes and toiletries by 4:00 and they told me that I wouldn’t be getting the central line that night, but I would be first in line the next morning.
My room was in the actual bone marrow unit. I was kind of an anomaly as the only healthy patient on the floor. In fact, when I had to be checked for discharge, the doc brought in quite a few of the residents so they could all see the healthy woman because it wasn’t something they got to see a lot. But since the other patients weren’t healthy, I had to stay away from the rest of them. I did at least get my own room.
Here’s my set-up with my computer bag, blender ready for my shakes, and the rest of my food. The adjustable bed was pretty awesome too.
I had a pretty boring night except for being awakened at 4:00am for my pre-procedure blood work. By this time, I was just ready to get it started so I could get it done.
Finally, I was brought to the operating room. I got some phentanol and Benadryl via IV so I was feeling good in no time. The doc used lidocaine topically at the insertion site. After that, the central line went in smoothly and it got stitched into place. All very quick and painless, at least until the lidocaine wore off. Then I had this dull ache in my neck from where the catheter was stitched to it. It was another teaching moment for me because I know that there are lots of people that have to have semi-permanent catheters in their neck or chest. These people already are very sick and then they have this permanent dull pain due the tube sticking out of their body.
I was taken to the donation center and the transfusion was started. After the hassle of the central line, this procedure was a lot easier than the standard one would have been. I could move my arms since I didn’t have IV’s in them. Thanks to the Neupogen, my white blood cell count was high- 28 when the usual range was 5-10- so I was done in about 5 hours.
Check out the catheter in action. My whole set up was pretty good with my computer and table. Plus, I got control of the remote so I could watch some Supernatural reruns.
The whole experience was very humbling for me. I know that chronic illness and diseases are hard and they suck, but I’m a very healthy and fit person so I couldn’t even imagine what that must be like for a patient. Your life gets put on hold, you get stuck thousands of times, wait for test results, take different medications or try different surgeries when the first- or second- one doesn’t work, stay in a hospital where they wake you up every 4 hours to check your vitals…I could go on, but you get the point.
The whole thing just sucks and I suddenly felt very grateful for my health and that of my family.
I did feel like a superhero for those days because I did something that not a lot of people have done. I saw it through, even though it wasn’t fun. And, hopefully, a woman’s life was saved as a result. I didn’t have to jump over a building with a single bound, run through a hail of bullets, or use any kind of superhuman strength. Just a simple medical procedure and I learned a lot about myself, gained some new perspective, and renewed my gratefulness for something that I had taken for granted- my health.
I was released with a pressure bandage on my neck that made it hard to turn my head. I was back to working out the next day, although I had to make some modifications because my neck was still sore and I was told to take it easy so the hole in my jugular wouldn’t burst (my mom kept reminding me about that hole). I moved furniture and hung pictures as well.
It’s been a week and a day since the procedure and a week since the procedure for the recipient. I’d say it was a success on my end. In a year we will be given the opportunity to find out the other’s name and maybe even meet. I truly hope that this woman is healthy and vibrant by then and that this year has been much better for her than the previous one.
I will still donate blood in the future and I would do the stem cell donation again, if asked. I would recommend it to anyone as well. You do feel great for helping someone else. And, most of the time, it goes a lot smoother than mine did.
Questions? Comments? Please let me know.