2. How where you able to find a donor match? My two brothers and I went to Columbia-Presbyterian in NYC to be tested. One was my half-brother from my father and the other was full. They asked who did I think would be the match and I said my full brother, not just because we shared the same parents, but because he had the trait so I knew there was an underlying genetic (DNA) match. The donor matching is done by matching proteins around the tissues (major organs) and White Blood Cells. However underlying genetic matches lessen the chances of Graft versus Host disease.
3. How long was the process from start to finish, please explain the process? It depends. Typically you would go to the NIH and have some pre-test done. Depending on how you schedule it you can do it over a couple of weeks or months, and schedule your SCT months or a year later. I was in a rush. I wanted it done ASAP! For me it took a total of 38 procedure days. 10 for preliminary and 28 for the Stem Cell Transplant process.
My brother and I went down there March 20, 2010 and spent 10 days completing the preliminary test and exams, including his donation. These include: Blood counts, EKG, Respiratory, 6-minute walk, Dental, Eye, and Psych exam. You will also meet with a “Blood Doctor” not a Hematologist, but a physician who specifically exams red blood cells. He will identify any antibodies and set you up with the exchange transfusion, and any transfusions you may require after the transplant.
Your donor will be given shots called G-CSF that will help them produce stem cells. A majority of your stem cells are produced in the long bones (femur), they will experience pain and discomfort in this area, nothing 650mg of Tylenol can’t take care of. They will receive these shots on Day 4, 5, and 6.
On Day 8 of 10 of the preliminary the donor will come in to donate the stem cells. You have to arrive at 6am and go to the Blood Unit. There they will have needles inserted into both their arms, one to withdraw the blood and the other to send it back in. These are hooked up to a machine used for apheresis; a procedure where elements in the blood are removed, in this instance the stem cells. The process takes 6 hours; they will provide a TV and movies. My donor fell asleep. Next is the main event; the SCT. I set mine up two months after the preliminary test.; June 1, 2010. The 21 – 28 days for the SCT process are as follows:
· Day 1 – Arrive and get set up in the room.
· Day 2 – Relax and meet with SCT team
· Day 3 – Receive exchange transfusion. This has to be done because the SCT procedure is strenuous and they don’t what you going into a crisis.
· Day 4 – Bone Marrow collection. Painful. Very, very painful. Especially if you have hard bones. My bones are extremely hard. They couldn’t gather any marrow from me. They tried….twice. The reason they need the marrow is to establish a base. This way they can compare where your original marrow was versus the new donor marrow you will receive.
· Day 5 – PICC line will be inserted if you do not have a port. They will use this to obtain blood, provide medication and administer the stem cells. If you have a port consider this a rest day.
· Day 6 (Considered Day -7 of the SCT Process) – Begin immunosuppressant therapy. Medication: Campath. Campath is NOT a chemotherapy drug, but a very powerful immunosuppressant. This will be delivered over one and a half to two hours, over the next five days. It will shock the body. You will experience extreme chills, similar to withdrawal symptoms. The only way to calm the chills is through 25mg of Demerol.
· Day 7 (Considered Day -6 of the SCT Process) – More Campath. More chills. More Demerol.
· Day 8 (Considered Day -5 of the SCT Process) – More Campath. Less chills as the body has adapted. Demerol if needed.
· Day 9 (Considered Day -4 of the SCT Process) – More Campath. Little to no chills because of adaptation (the body is a beautiful thing). Demerol if needed.
· Day 10 (Considered Day -3 of the SCT Process) – Last dose of Campath. No chills. No Demerol.
· Day 11 (Considered Day -2 of the SCT Process) – Total Body Radiation. Considered the knockout punch of what’s left of your immune system this weakens it just enough that it cannot mount a defense against the new cells. Men are provided what is called a “clam shell” a lead encapsulated shield to place their testicles in. Unfortunately, there is no protection for a woman’s reproductive organs. However, a woman who went through the process had a child a little over one year after the transplant, so the radiation did not affect her fertility.
Side effects = Hair loss, dry mouth, heartburn, and loss of taste buds. Most of the women lost all their hair. Men lose most or some. I didn’t lose my hair, but my taste buds were gone 2 weeks after the radiation. They returned 4 weeks later, sweet and bitter first; weird to say the least.
· Day 12 (Considered Day -1 of the SCT Process) – Rest
· Day 13 (Considered Day 0 of the SCT Process) – The day of the stem cell transplant. Today is the big day. Your height and weight will determine how many bags you will receive. I received 13 bags over 5.5 hours. I watched it all go in. I did not take my eyes off the bag. The stem cells know exactly where to go, right into the long bones. It hurts like hell. Like Sickle Cell crisis pain in the legs. Then once the transfusion is complete the pain dissipates. HAPPY NEW-BIRTH DAY!!!!!
· Day 14 (Day 1 after receiving the stem cells) – Recovery and blood test. Everything is fine for now. Counts are normal. Yellow eyes were gone and I was already feeling more energized.
· Day 15 (Day 2 after receiving the stem cells) – I felt like Superman. I walked 4 miles to the nearest Chipotle in 90 degree weather wearing a black sweat suit. Didn’t realize how hot it was until I got outside. I took the train back (train = air conditioner).
· Day 16 (Day 3 after receiving the stem cells) – Did it again (Chipotle is good). Although it was just three days after the transplant, I was ready to test my limits. This time I walked there and back for a total of 8 miles. The result = Not tired, not at all.
· Day 17 (Day 4 after receiving the stem cells) – White Blood Cells (WBC) begin to drop. Neutrophil count (first line of defense against bacteria) is getting low. My immune system is officially weak. Time to wear a mask. The PICC line is removed to prevent infection.
· Day 18 (Day 5 after receiving the stem cells) – WBC and Neutrophils continue to go down. I feel great though, but I know I can’t fight an infection so I wear gloves in addition to the mask.
· Day 19 (Day 6 after receiving the stem cells) – More of the same WBC and Neutrophils continue to drop.
· Day 20 (Day 7 after receiving the stem cells) – WBC virtually non-existent. BUT HEMOGLOBIN IS SKYROCKETING! UP FROM 8 TO 10!
· Day 21 (Day 8 after receiving the stem cells and Day 16 in total for SCT process) – WBC and Neutrophils are too low to register on the blood test. Once the WBC count is “critical” so to speak, it’s represented as ‘<1’ the Neutrophils are ‘<.02’. Hemoglobin 11!
· Day 22 (Day 9 after receiving the stem cells) – WBC and Neutrophils trickling up. Hemoglobin at 11.5!
· Day 23 (Day 10 after receiving the stem cells) – WBC and Neutrophils continue to go up, hemoglobin too. It’s at 11.8!
· Day 24 (Day 11 after receiving the stem cells) - WBC going up Neutrophils starting to normalize. A blood test is performed to find the donor percentage. Results: 97% donor cells. Hemoglobin S at 3% Normal Hemoglobin A at 97%. This will balance out to Hemoglobin S = 30% and Hemoglobin A = 70%, because my donor has sickle trait. Hemoglobin count 12!
· Day 25 (Day 12 after receiving the stem cells) – Can remove mask. Neutrophils normal (.5 is high enough to fight bacterial infections). It’s been 20 days and things are looking good.
· Day 26 (Day 13 after receiving the stem cells) – Day 21 since I’ve started down the road to the “cure”. Unlike my counterparts I did not have any hardships. I’m considered lucky, as this is not always the case. All counts perfect I can go home! Wait. There is a chemical showing up on the blood results that are usually associated with the heart and liver. Why is it so high? I have to stay one more day. Damn it.
· Day 27 (Day 14 after receiving the stem cells) –Day 22, I advised the doctors that I’ve been working out in the room since day 12. They explain that that may be why those chemicals were high. They tell me to not workout today and if the counts are low tomorrow I can go home.
· Day 28 (Day 15 after receiving the stem cells) – It has been 23 days since I started the SCT process. All counts across the board are normal. I can go home. Mask free, glove free. Just can’t go swimming. It’s the beginning of July in hot Maryland and I can’t go swimming. Why? The immune system is fine for basic interaction but, pool water is disgusting. POINT TAKEN.
4. Did it hurt, and are there any side effects? By and large, it didn’t hurt me. The collection of the bone marrow was painful, and the day of the SCT was painful, but nothing close to a full blown crisis episode. In addition, I didn’t experience anything close to the hardships of my peers. One person went through hell. Unfortunately most of the women do. It didn’t help that she had multiple antibodies and iron overload because of the many blood transfusions. Although she was released before me she ended up returning multiple times. I am happy to say I didn’t experience that. I’m also happy to say she has been doing well over the past year and no longer have Sickle Cell.
In addition, there are many other side effects that can happen. Cytomegalovirus, Herpes simplex viruses, and extreme bacterial infections, can occur because of your low and compromised immune system. There is also Graft vs. Host disease, but no one who participated in the study experienced that; NO ONE. That is one of the major breakthroughs. What I did encounter was C.Diff. Think stomach virus times a million. Horrible, is an understatement. I had it for ten days and went from 167lbs to 137lbs. It’s treated using Flagyl or Vancomycin. Go with the Vancomycin if you get it. It’s a very powerful antibiotic and works better than Flagyl. I ended up losing 30lbs in ten days, because of this infection.
5. What Medications did u take before, during and after the procedure?
Before the SCT: Oxycontin 320mg twice a day and Hydroxyzine 50mg six times a day to control the itching and Nexium once a day for acid indigestion and additional histamine blocking properties.
During: The meds mentioned above, while lowering the pain meds every day. I also had to take Valtrex 800mg twice a day, to prevent infection from the Herpes virus, Sirolimus 6mg once a day so I don’t reject the stem cells, Bactrin 250mg to fight bacterial infections, and penicillin 250mg for additional protection. In addition, I had to use a fungal fighting mouthwash for 6 months to prevent thrush, a yeast infection of the tongue and throat.
After: For five months I took the Valtrex, Bactrin, Sirolimus, and Penicillin. However, I stopped all meds six months after the SCT. This is not recommended, but I didn’t like how I was feeling with all these meds in my system. We have to pay attention to our body. Mine was telling me to stop, so I did.
6. How much did it cost? I hear the cost is over $250,000, which was in 2010; it is probably more now. Because I participated in a government study everything was free. I was even given a $30/day stipend for the 120 days I had to remain in the area. The first 120 days are the most crucial because that’s when all the extreme things can happen. Once the 120 days is up you can leave the area. I returned to the Bronx on day 100. My children had to go back to school. I came back down on day 107 and remained until day 120.
7. Who was the doctor that did the procedure? Dr. John Tisdale leads the Sickle Cell Stem Cell Transplant team at the NIH and is head of the study. You will mostly see doctors Matt Sheih and Courtney Fitzgerald. The clinical nurses are Beth Link and Wynona Coles; they will maintain contact with you. The whole team is great.
8. How long where you in the hospital, and how long is recovery? I was in the hospital for 28 days. Fully recovered by the end of August. So from start to finish it takes about three months to recover, in terms of going back to work/school. It takes 2 years for the immune system to return to 100%. One year for the T-Cells and two years for the B-Cells. Because I was no longer on immunosuppressant drugs, my immune system returned to 100% at a faster rate. I was pretty much 100% normal after one year. However, I must stress the study asked that you remain on these medications for 2 or more years.
9. Have you gotten sick from sickle cell since? No. Nope. NO WAY! If you have any damage before the transplant that will not go away. The AVN in my left hip and left shoulder is still there, but it not caused any further issues and all further damage has stopped. I no longer require a replacement of any joints. If the sickle cell would have been there I would have needed to eventually replace these joints.
My heart murmur is gone. Although my spleen took a beaten over the years, my pediatric doctors chose not to remove it and now both my spleen and gall bladder function properly. I have not caught a cold of any type since my transplant. My children and wife were very sick one year after my SCT and I didn’t get sick. Had I still had Sickle Cell I would have ended up in the hospital several times over.
10. How has the procedure changed your life? I can do anything and everything I wanted without the worry of a crisis. I don’t get tired. I don’t require sleep as often. It’s a new life. That “stop and go” lifestyle has been replaced with just “GO”.
11. Is diet a big part keeping yourself healthy, if so please explain some of the things you do on a daily basis? Honestly, I don’t worry about my diet anymore. I don’t have to. Admittedly I worried about my diet because I had to, because of the Sickle Cell. Now what I eat doesn’t hasten a crisis. My body no longer has to work harder based on what I put in. I try to maintain a healthy diet now because I put on weight faster. However, because I can exercise as much as I want and as long as I want I don’t necessarily worry about eating healthy. I adjust my diet according to the results I want to see in the gym now. I limit my red meat intake, as well as dairy; I still drink plenty of water, limit the process foods, and eat lots of fruits and vegetables. When I had sickle cell instead of limiting “unhealthy food”, I didn’t eat these things at all. This is because I needed to remain as healthy as I could. Now I basically can do whatever I want. This in no way means go out and eat everything. What it means is I can eat foods considered unhealthy without worrying about a crisis.
12. Is there any difference between bone marrow transplant and stem cell transplant? Both procedures involve stem cells. The difference is how the stem cells are acquired. When the marrow, which contains stem cells, is drawn from the bone of the donor and transplanted to the patient; it is called a “Bone Marrow Transplant”. However, when the donor is given injections of G-CSF, which causes the marrow in the bone to mass produce stem cells, these excess stem cells are released from the bone into the blood stream. The donor is then hooked up to the apheresis machine and the stem cells are removed from the donor’s blood stream and transplanted to the patient; this is called a stem cell transplant.
13. Do you know the success rate of those that have under went the stem cell transplant? 85% when I did it in 2010. It may have gone up. This procedure for Sickle Cell patients has the highest success rate amongst any transplant procedure. There have been zero deaths, since they changed the procedure. It is totally different from transplants performed on cancer patients. No chemo is used and only one dose of radiation. In addition, if it doesn’t work the sickle cell doesn’t come back as bad, at least for the first couple of years.
14. Any words of advice for families looking to do this procedure? Go in expecting the worse. I went in expecting the worse, but I also knew it would work. As weird as that sounds, that’s what I did. Believe it will work, but prepare yourself in case it doesn’t. I knew either way I was going to be fine. I was going to end up without sickle cell or at least go back to a form of sickle cell I can handle. It was pretty much a win-win in my case. I’m a very spiritual person, I believe what I want will be because I believe it to be. The doctors will tell you my results are not typical and I believe that is because I was not the typical patient. Don’t be the typical patient. The body follows the mind. Remember that.