PART FIVE: Donation Day!

“BEEP BEEP BEEP” the hotel alarm chirped at 5am. I was already wide-awake with anticipation and excitement. I was grateful that the registry set up a hotel arrangement for my husband and myself that was conveniently connected to the hospital. I will also add that my dear friend, who was close to 9 months pregnant at the time, also stayed with us and was quite comfortable. You and your loved ones WILL be taken care of in every way, and the registry covers all the details for you! Due to the extent of my excitement, we were dressed and out the door within minutes.

The prep procedure is similar to that of any other surgery: changing into an oh-so-stylish hospital gown, meeting with nurses and the anesthesiologist, and getting some additional blood samples. The IV is not comfortable to have in but it does help remove your feeling of thirst from fasting. Your team will do their very best to get you into the earliest OR available. My surgery was pushed back until 10am but I was continually checked on while waiting so I did not feel forgotten. When it was finally time to wheel me to the OR the staff was nice and let my husband follow us until the very last minute so I was completely comforted.

I was grateful for the warmth my husband’s support provided because the OR was COLD. Thankfully, within a couple of minutes a mask was over my face and I was told I was going to take a very nice nap. When I awoke in recovery the first thing I felt was disorientated and nauseous. The last thing I remember was my husband holding my hand so I confusedly kept asking where he was. The recovery nurse went and got him for me, which they will do for you provided the recovery room is not full. I was instructed to eat some crackers and drink fluids. My throat was sore from the breathing tube (breathing tubes are necessary anytime general anesthesia is used) so I requested soda, which was soothing. The ONLY negative part of my experience was that someone dropped the ball and forgot to administer my anti-nausea medication. Your advocate will bring you pain and nausea medication before you leave the hospital, but the hospital should administer some through your IV while in recovery.

Advocating from the Recovery Room

I was moved back into my hospital room and that is when I started to feel soreness in my pelvic bone. It hurt to move but in a good way. It was the kind of feeling whenever you have a tough workout and then force yourself to move or stretch the next day to get the lactic acid moving out of your muscles. It hurts but you know it is helping you. They will always keep you for supervision after surgery, but how long they keep you depends on you and the hospital. I was ready and wanting to leave to a more familiar place to recover. Due to the absence of my nausea meds, I did eventually throw up but I felt much better afterward. We were finally released and thus began my recovery period, bottom line:

-Expect to rest the day of and the day after surgery.

-I required assistance to move around and use the restroom but only for about 10 hours.

-Have someone supervise you for 24 hours incase you get dizzy.

-I switched from prescribed pain meds to ibuprofen within 36 hours.

-I was back to work and doing light workouts after 1 week. I have a very active job, you could return to less active jobs sooner.

-Soreness was a factor. I would say my pain level was about a 6 the first two days and then dropped to a 2-4 shortly after that. Pain was only bad when I moved, and icing and pain meds made resting pain free.

-My soreness lasted a total of about 2 weeks, but I only felt it when working out or sitting for extended periods.

 And lastly, think of your recipient every single day. It will make it all absolutely worth it, and trust me…you will be eager to do it again if given the chance. 

PART FOUR: Be a warrior NOT a worrier!

The journey to donation day is just that…a JOURNEY! Be prepared to experience ups and downs emotionally, and strive to be flexible.

I am very obsessive when it comes to planning, I like to have a plan A, B, C, and D. Do not worry if you cannot relate, your advocate will take care of all the plans for you. My mind started racing as I tried to do my advocates job in covering all the bases. My mother was having major surgery around the time the transplant was scheduled, so I felt very accomplished when a smooth plan of action was set. 

My phone rang and my advocate’s name showed on my caller I.D. This phenomenon eventually became a trigger for anxiety because I always assumed it was bad news after this point. I was told to grab my calendar because the transplant was being postponed. My recipient ran positive on a test that she needed to be negative on. “Oh no. Will she be okay? Will she be able to survive this transplant?” It will shock you how much love you can have for a complete stranger. I don’t even know her name, so she has fondly become known as “my little princess.” The news that my recipient may not make it to the transplant rocked me to my core.

I cannot emphasize enough how much you MUST seek out support during this time. Worrying about your recipient does not help them gain strength and survive transplant preparation. So, what can you do? Well, to be honest I didn’t have the answer until blessed support intervened. My dear friend has a mission to encourage children who are fighting cancer or disease. She came up with the wonderful idea to make superhero outfits as an outward acknowledgment of the strength these children have within.

My friend lost her mother to cancer. Instead of letting cancer have the final say, she found a way to help those still fighting…my recipient included. While the superhero outfit for my princess was being made, my friend prompted me to pray over her. The sewing machine worked the materials while I was working on finding strength in my heart for my sweet princess. Strive to be proactive while you are waiting to donate (You can write your recipient a letter, make them a gift, and/or pray over them!) 

That day I found so much peace and strength, which you will need to find, too.

The days leading up to the transplant you may:

-Learn to write in your calendar with pencil.

-Find that some people may not be as supportive as you need. That is OK…move along.

-Take lots of vitamins and get lots of sleep. Avoid people that are sick, regardless of if it hurts their feelings. I got sick the WEEK of the transplant date. Thankfully, Be the Match provided a team of doctors to get me well enough to donate.

-Miss out on some plans. Traveling right before a transplant is too risky.

-Feel immense pressure and responsibility because someone’s life now depends on you.

Regardless…I PROMISE you if you push through it, you will find that it is absolutely worth it. I would donate again in a heartbeat. These are all minor inconveniences in comparison to the LIFE you are offering someone. Take lots of deep breaths and remember… your recipient needs a warrior, not a worrier. 

PART THREE: Full Physical and Informational Session

The next step after joining the registry is waiting…everyone’s favorite! If you are a potential match you will be asked to undergo confirmatory blood testing. The tests are looking for a specific protein marker in your body.

Myth buster moment: Bone marrow donors are matched to recipients by a protein (HLA) in the body with a super fancy long name and NOT by blood type. This protein is responsible for knowing which cells are a part of your body and which cells are party crashers (i.e cancer or disease).

Once the best match for the recipient is chosen, the donor proceeds on to a full physical examination and an informational session. For me, this part caused some anxiety because I had moved out of my registry city. The physical HAS to be done by the actual doctor operating on you, so it was decided that I would do some traveling.

If you are worried about any costs required in becoming a donor, this section is for you:

-The donor registry covers ALL costs. This includes: travel expenses (they will pay to fly you or pay for your gas), hotel stay, meal costs for you and a travel companion, and boarding expenses or the fees required to travel with your pets.

-If time off work is a concern, the registry provides a reimbursement of lost wages.

-You will not have any medical fees, but you do get to keep the results from the full physical.

The required physical is standard procedure so I won’t spend too much time addressing this part. I will say that it was very comforting to meet the doctor pre-surgery, and to ask him any of my questions. I briefly got to meet other donors who were donating through the method much like giving blood. I immediately

felt a sense of comradery and excitement surged through me.  The full physical is coupled by an informational session with your donor advocate…this is when it starts to get REAL.

The informational consists of a video explaining the procedure, forms, and finding out more about the person you are donating to. I would recommend having a family member or loved one with you to help you process the information you are receiving. I was very grateful to have my mother by my side to help me remember to take one thing at a time. First we learned a little bit about my sweet recipient. You are provided age, gender, and disease/cancer type. My recipient is a very young girl with a deadly blood disease, which is very similar to the disease that took my Grandmom’s life. This was my first “tissue moment.” Then you will fill out forms documenting your health history and allergy information. This is important because your donor will receive your blood type and all of your allergies.

My next tissue moment came when I was momentarily made uncomfortable by the facts. Before this point in the process you could change your mind and back out with relative ease on your moral compass. The informational is when you sign an agreement to have someone’s life in your hands. This agreement is still breakable; you will never be forced into anything you don’t want to do. The purpose of the agreement is to help you understand the impact your actions going forward will have.

Uncomfortable fact moment: your recipient has to undergo radiation treatment before the transplant, which completely kills their immune system. The prep time is usually between 5-9 days of intense treatments and isolation. Once your recipient starts preparation, if you back out or are unable to donate it is VERY likely that they will die.

There was not even a small part of me that would consider backing out, but receiving this reality still caused a great deal of anxiety. What if I get sick? What if I get in a car accident? The worst-case scenarios may start to whiz through your brain but you are not a lone. I will leave you with the very comforting words of my donor advocate:

“We are your seat belt. We are looking out for you and we just need to take this one day at a time. We will help you get to donation day.”