I was notified in 1992 that my brother was diagnosed with leukemia.
I found out that I was the match to be my brother's Stem Cell Donor. When I found this out, I searched the net to get what Information I could find to be prepared for my part in the procedure.
Nowhere on the net did I find, in great detail, the procedure known as Stem Cell Transfer. It's mostly about Bone Marrow Transplants for Leukemia patients. Bone Marrow Transplants are not as widely used as they used to be. There's too much chance of infection to the donor.
A part of the process used in the procedure in Stem Cell Transfer is called "Apheresis." Soooo, I'm going to write about Apheresis, what I was supposed to do, and how I was supposed to do it. Hopefully, my doing this will give comfort to those of you who will be new prospective donors.
Before I start my piece, I'd first like to acknowledge my helper, Mary Kay, known on the net as
Granny Dragon. She and I have been in each other's face since I started this project, discussing when to use the word 'prospective' and the word 'perspective.' She's by my side till all hours, editing my grammar and punctuation. I think that between the two of us, we might have even reinvented punctuation and grammar, as the world knows it today. I could probably do this piece without her, but with a dedicated friend like her around to help, who'd want to!
I'd also like to acknowledge the fact that hubby was there with me every step of the way. He made sure that I was where I had to be when I had to be there. I became ill over concern for my brother more than once, and he was right there making me soup, cups of tea and whatever I needed to have to be well and back to my old self again. He's just what ya need at a time like this but you can't have him, he's mine. Thanx, John. John will also be checking the page for accuracy.
I am not going to refer to my brother, the patient, by using his name. I'm not that sure that he'd want me to. This report is about me and what I went through on my brother's behalf, not about my brother.
1992 When my brother was diagnosed with Myeloid Leukemia
We, the children in the family, went to the hospital to have our tissue typed to see whom, if anyone, would be the match to be the marrow donor. Back in '92', they were doing marrow donations, so it was common to use that term. The girls had 11 blood samples taken and the boys had 10 taken. The girls had the extra sample taken because they wanted to check on a possible pregnancy.
We were notified two weeks later who had the right tissue type to be a donor. T'was I -- yepper, it was -- who matched. Not perfectly, but enough that they said it was worth the try, considering the alternatives.
Once it was established that I was to be the donor, my brother and I both had appointments for more blood testing. His, to see how he was doing with meds prescribed to him, and my testing was to check again for type matching and for a clotting test. They actually prick your finger and sit there with a stopwatch, timing how fast your blood clots. I did good, by the way!
Now the year is 2001:
My brother's in the acute stage of his disease, and there are no alternatives left but to go to the donor for help. To do so before the acute stage is counter productive. Not to do so at the acute stage is taking lots of chances. You have to at least try donor transplant.
It's at this point where facts need to become real and evident, and I absolutely wanted to know what was expected of me. Yes, I had appointments with doctors for consultations and such, but I wanted to try to prepare myself ahead of time as to what I would be called upon to do.
Mention was made of Stem Cell Transfer by my brother's family, but on the net, not a lot of information was available, just general information, as a procedure for the cure of leukemia patients. I wanted a more detailed report. A lot of attention was called to Bone Marrow Transplant. So I got to where I didn't know what procedure they'd want me to use, till I got into a conference with a live body who knew exactly what they were talking about.
That day finally came that I was face to face with the medical staff of the leukemia section of the hospital. That's when I had more blood tests taken to make sure that I wasn't carrying a disease that would harm my brother. They did all the vitals too. I'm fine and ready to go any time, Doc!
Timeline the week of the Stem Cell Transplant:
Week of Monday, January 8th, to Monday, January 15th
Today, Monday, January 8th, they start getting my brother ready for accepting his donation. They're going to give my brother four days of radiation, a day of rest, and a day of chemotherapy. My brother gets the stem cells, after the lab does their processing, the same day that it's collected. It's presented to him in a "drip." By the way, he's 59 years old right now and i'm 57. The age of the patient makes a difference in the treatment and outcome.
Thursday January 11th:
Injections of Neupogen, the "Growth Factor"
During this period of time I'll be getting Neupogen injections, one per day for four days, Starting Thursday, January 11th. I have to take injections of Neupogen to accelerate the growth of my blood products. The Neupogen is what's called a "Growth Factor." It has to be refrigerated, but when you want to use it, you just take out what you need about an hour ahead of time. If you use it from the refrigerator you'll likely have a hard knot at the injection site.
I had a choice to get injections from the people at the hospital for the four days or they could show me how to do it and I could give myself my own injections. I opted to do my own after they showed me how on the first injection day. I live an hour away from the hospital, so it's easier to just stay home and do it myself.
They want the Neupogen in the fatty layer, so your injection site is at your stomach, just below your belly button, off to the left or to the right. You don't have to push too hard to get to the fatty layer. As a matter of fact, if you push too hard, you'll end up in the muscle tissue and that's where you feel it and have an 'ouch.'
It was no biggie to give myself the injections. I 'pinched an inch,' inserted the needle just under the skin, squeezed on the plunger to inject the fluid, pulled the needle out and that's all there was to it. When done properly, you'll barely feel even the needle going into the entry point. The needle's not that long and if you see some of it from the top, it's ok. All you have to do is get the point just under the skin layer.
Monday January 15th:
Time for Stem Cell Collection
It's time for me to go through with my stem-cell collection. It goes by percentage of my brother's body weight, how much 'stem cells' he needs. If they don't get enough stem cells, then I have to go back the next day to have them collect the rest, which in my case, is exactly what happened.
This is what I went through and it might not be the same for you. This is just to give you a general sense of what happens during stem-cell collection. As it turns out, I had a bit of a problem, which I will explain in the following remarks.
They have a chemical that they use called "Citrate" to stop your blood from coagulating. As it turns out, my body and this anticoagulant had a major dispute, and things were rougher for me than the average stem-cell collection would have been.
The Apheresis machine:
The machine that they use is called an "Apheresis" machine, meaning that it collects and separates blood products. The white blood cells contain the 'stem cells' that are needed for the transfer. This machine, once attached to me, will collect blood, keep the white cells in a designated area and then return what was mine back to me.
Your blood components all have their own weight, and the machine, run by a centrifuge, separates the different components into a sectioned tube. Whoever's operating the machine has control of the dials and manipulates them to get the different weights into their respective sections of the tube.
In stem-cell replacement they put a needle in each arm. One arm has the needle for the blood to go into the machine and the other needle goes into the other arm for the blood to return to you after the machine takes out the white blood cells.
The machine separates the layers of blood, gathering the layer that's the white blood cells and putting the rest back into you. During the process you can't be unhooked to go 'p' or anything, so you have to be careful of fluid intake previous to the procedure. You can't bend your arms at all. Like the nurse says, "Steel needles don't bend."
In a normal collection, the patient should only feel a slight tingling in their lips. I felt it all over my whole body. Kinda like the feeling that you have when you hit your funny bone, the whole body feeling like it's going to sleep. The calcium in your body's being used up in breaking down the anticoagulant so they give you Tums to put the calcium back. In my case, the anticoagulant was not anything that my whole body could accept, so the tingling feeling never went away, it only got more intense.
My choices were few, either keep going or stop. I reminded myself that my brother wasn't in any bed of roses, the agony that he was in, and that this was his only chance of survival.
I considered what I was feeling and decided that I could bear it till it was over. Once the machine stopped, it would all be over.
My husband obvserved, and these are his remarks about what he saw on that first collection day:
It's been very trying for her. The procedure seems simple but it sure takes a lot out of the donor, both literally and figuratively. It takes three hours, during which the anticoagulant that is used depletes the available calcium, which causes tingling all over, slow motor response, the feeling of swollen lips, sleepiness, and muscle cramps. They had her popping Tums in order to counteract the calcium loss. This was not totally effective and also caused her to have a sour stomach. During this period she also did not drink for fear of having to urinate: once you're connected, you're there for the duration.
I got her to eat a little before we left and plied her with two cartons of milk. Pushed the same, along with cheese once we were home. I went for chicken, ice cream and calcium tablets later. Couldn't get too much down her. She said that she wasn't hungry and felt bloated. Her stomach was gurgling and she experienced a long bout of diarrhea. Apparently acidic, since she said that it burned on passing. The numerous bowel movements inflamed hemorrhoids. Must finally have slowed; she seems to have finally gotten to sleep. I really hate to wake her. Around 6:00 AM, we start the whole thing all over again.
They only got half of the stem cells they wanted. We picked up some more growth factor on our way out and she did the injection last night. Let's hope that they are able to complete their harvesting today. She's a mess and I am truly suprised that she decided to go through the process another time.
End of note of observation by husband
That afternoon I got my phone call saying that I had to come back to collect more.
Tuesday January 16th:
When I got there that next morning, I told the doctors that I couldn't possibly go through their procedure again as it was yesterday. I told them about my long night and what I had trouble handling during yesterday's procedure and about everything that kept me up all night. We, all six, gathered together, looking back at what was used and how it was used. We figured out what needed to be changed and they hooked me up, and I got through the 2nd collection just fine. The main reason for my discomfort in the first session was that I was having a bad reaction to their anticoagulant. There are other changes too that they made for my comfort level for this second collection.
I am so proud of myself for sticking it out and not stopping. It did take a lot of courage to continue, but I dug down deep and kept myself as calm as I could till it was over. I was really determined that I wasn't going to leave this unfinished.
And I did it! I completed my mission!
I'm of the mind that a normal collection from a donor who has no reaction to their anticoagulant could do okay if they have courage and just hang in there.
Right now, the day after the last procedure, I feel wiped out. I can do stuff, but not at a quick pace, and for some reason I have hardly any appetite. I think I'm getting over the shock of what I went through, but I'll be ok. It was a chore to write this out, but it needed to be done, as others want to know what I went through too.
What's neat about is that I am really into medicine and medical procedures but never made of profession of it because I didn't want to be responsible for a human life. Isn't it ironic that get to be responsible for a human life anyway!
Sunday Jan 21:
I am finally starting to get my appetite back again. If I didn't know better I'd think that I was suffering some kind of depression, but I realize that my body is trying to get itself back to normal. Poor body, what I put it through! LOL.
My suggestions to you:
My case is my individual case, and you most likely will not have the exact experience. The generalities, however, are the same. Talk to your doctor. Tell the doctor how you feel about everything that they want you to do. It's your body and you're the boss. Tell the doctor of everything that upsets you. The doctor's on your side!
If you'd like to check for what information is on the net in regard to leukemia cures, some good search words are "Growth Factor," "Apheresis," "Stem Cells," "Neupogen," "Leukemia," "Bone Marrow."
From my brother Ron in Michigan, His daughter, Chris's son, Alex has childhood leukemia.
He's about 9 years old, had the problem for 3 years now.