Here is how you know you need a blood transfusion in the days and weeks after a bone marrow transplant.
It will start at 3am when the cocktail of fluids and supplements from the previous day’s treatment will wake you up with a strong need to pee. However, no matter the urgency, you can’t just get up. If you don’t slowly sit up and wait; then make sure you flex the muscles in your arms and legs first, you will stand up with too little blood pressure to push oxygen to your brain and you will fall back into bed (if you are lucky- if you are not lucky it will be the floor). Your heart will not provide enough force to push blood up against gravity and so it will pool in your veins, waiting for your major muscle groups to provide pumping action.
Once you get to the bathroom, be sure to either sit down to pee or place a steadying hand on the wall so you don’t sway or make a mess. There is a good chance the effort of the 10 foot walk will also wind you.
Assuming all that goes well, you will need to wake at 7am for the daily drive into the clinic. This will mean you need to fight to wake up. I don’t me deal with being groggy, or wanting to go back to sleep. I mean feeling like you are at the bottom of a 30 foot well, and you have to climb up and will your eyes to open at the top.
Once you’re up, remember your nighttime routine to sit up slowly. Next, as you dress don’t forget the compression socks. It turns out that the cells and proteins in your blood determine the amount of fluid that stays in your blood vessels, and how much is pushed out to soft tissues. Your proteins are out of whack, so your body pushes fluid into your ankles, swelling them, and painfully engorging your muscles. The socks provide a temporary reprieve squeezing the fluid around.
Now that you’ve made it to the clinic you have a very important decision to make. You enter the building on the ground floor. There are two ways to get to the clinic one floor above. You can take the elevator (the blessed blessed elevator), or you can take the staircase in the atrium. The physical therapist who deserves sainthood for the evil glares she endures with a smile from you, has made it very clear that if you don’t do some exercise, you will have real trouble in walking. You will hear her voice in your head sweetly telling you that stairs are the best exercise you can get right now. You will also see in the face of your beloved caretaker, that she is hearing that voice too.
The stairs are split in two by a merciful landing. The first half is easy…you will only need to rest here for a minute or two. However, and this is very important, at the top of the second half, to your right is a bench. Do not stop until you are sitting on that bench. It is very important, because at the top of the stairs you will be suffocating, and don’t want to fall down the stairs. Suffocating is not an exaggeration. The deep gasps for air, the empty feeling in your lungs, and the panic you are feeling is real. Without enough red blood cells to take oxygen molecules to your brain and body, you can fill your lungs as many times as you like, but it will not make a difference. You might as well be drowning.
But, it will pass. You will stand, you will walk, and you will make it the 100 feet or so to the treatment area. The nurses (the blessed blessed nurses) will draw vials of blood from an external central line that leads from outside of your body, through your chest, up to your neck, and then down to a point just outside the heart. Then you start to hope for less than 8. It is not always a hard rule, but in your mind you are hoping the hemoglobin count is 7.9 or lower. 8 is the threshold for a transfusion of platelets – red blood cells. These are the cells you need to breathe. These are the cells you need to keep from fainting. These are the cells that will keep you awake for more than three hours at a time.
Without transfusions of red cells and platelets in the days after a bone marrow transplant, you die. Without these transfusions in the weeks after the transplant, when your new marrow is growing, you may not die, but you won’t enjoy living.
Today, from 12-6 at the Holy Cross Church at 4112 East Genesee Street in Syracuse there is a blood drive. The blood you give today may help a bone marrow patient like me. It may help several infants in hospitals around the area. It may save a life of a patient in surgery. No matter who it helps, it will mean that a father or mother or child or grandparent a cancer patient a hemophiliac a friend or a lover will live. Please consider giving a gift you hopefully never have to think about to a person or who can think of nothing else.