The process was a long and hard one but after about a year I was finally checked into the transplant ward and We bEGAN! I was so relieved to have finally started the transplant itself after such a long time from when we first discussed it as a possibility. I truly believed that this transplant was going to CURE me. I really did. After months of praying and fasting about it I had faith that I would be cured. It was just a matter of being done with it already. Before the transplant could begin my insurance had to give an okay to Dr. Filicko that they would indeed pay for it. However, I have Medicare and their policy is that they do not give pre-approvals (though on the Medicare website it says I qualify) the Oncology department couldn't go forward without a verbal ok because they heard from a different hospital that Medicare didn't pay for sickle cell patients to have a bone marrow transplant. Half of the transplant was being paid for by the stimulus package the hospital got from President Obama and included in that package was any other medical treatment needed as a result of the transplant. For me that was fertility treatment since the transplant would keep me from being able to have kids so through fertility I could save my eggs. In addition to fertility, the stimulus packet would cover the medications I got from the fertility doctor and the drugs needed for the transplant. It took about six months or more of my beautiful, courageous, supportive, and head-strong (when she needs to be) mother calling every Medicare site, leaving messages, calling supervisors, pushing Dr. Filicko to return calls, and the like--to finally get someone who was like: what she needs a transplant for sickle cell--sure what's the number to her doctor? And it went from like being in a never-ending marathon to a sudden stop. My mothers determination, heart, intellect, and love for me (with God's grace of course is what brought the transplant around. After we got the go, the transplant was scheduled for like a month from then. I was so excited!
Well I responded well to my brother, Fola's, bone marrow. There was no complications, infections or any other issue. It was a fear that the transplant would cause me to have a crisis (pain attack) but I didn't. Everything was smooth and I was discharged within a month of the procedure which is really good. Some are in for months. After being discharged the hard work began. There was so many drugs to take that it felt like a meal every time I took my post-transplant drugs. It was a lot of drugs and I had to be diligent about taking them at their appropriate times throughout the day.
I was not allowed to go outside for about the first month or two after the transplant. I was restricted to my home because they were afraid of my getting infections from the public. In fact, the times that I did have to go out for only things like my doctors appointment every other day, I had to wear a mask. It was interesting seeing people look at me and wonder what I had that caused me to have to wear a mask. The funny thing was I wasn't wearing a mask to prevent other people from getting sick but to prevent myself from getting sick out of contact with them.
After months of constant follow up and meds from the oncology center a couple times a week, my doctor sat me down to tell me that my body rEJECTED my brother's bone marrow. I was stunned and disappointed because I was so sure that all of this happened for a reason. Coming to Philly, being taken care of by the specialists, being referred to do a bone marrow, meeting Dr. Filicko, being chosen by her to do it despite the fact that she could have chosen any other patient she'd already met with to be the first. I mean I was sure everything happened for a reason to bring me a cure! So when she told me I was rejecting my brother's bone marrow I was heart broken. I think I even starting to cry as she continued talking. What went through my head was: so I'm not going to be free, huh? Despite the fact that the transplant didn't take I still do believe this all happened for a reason. It just didn't end the way I wanted it to but I learned a lot of lessons through this.
Someone wrote me and suggested that I share post transplant experience because not many people know about that side of it and she is so right!
Post transplant for me was filled with endless doctors visits, medications, and monitoring so much so that now whenever I got sick I no longer went to the regular hospital floors but instead went straight to the transplant ward because they needed to make sure there weren't any complications. Aside from my sickle cell taking me to the transplant ward I would end up there because I would get these intense stomach aches that I had never experienced before (not crises/SS pain). It was weird. It wasn't a crisis but a stomach pain transplant patients would sometimes get. Oh my gosh, they hurt so much and the normal pain meds did nothing for it. Dr. Filicko finally set me up to see a specialist and it was those doctors that prescribed me belladonna which would basically numb the lining of my stomach. Thank God for belladonna because that was the only thing that helped but it tasted horrible! I had to take this drug for months and months. Another complication was with my liver. The levels were high and I had to go to the transplant ward to be monitored. Like I've explained in a previous blog going to the transplant ward is an ordeal. Anyone coming to visit me had to wait after crossing the threshold the outer doors would close and you'd have to wait for the air to compress (1 or 2min) then go through a door where you are immediately in an area where you have to wash up as surgeons do. Then they put on a gown and gloves before walking down to my room. Before entering my room they have to put on a second gown and mask before entering. Upon leaving they take off the outer gown and dispose of it in the specified bin before exiting my room and going back to the area where they remove their gloves and second gown before leaving the ward. No children were allowed for fear of transporting colds/infections.
The absolutely worst part of post transplant was the biopsies they had to take from my hip bone! They would do a biopsy every two weeks if I remember correctly. I would lay face down on the doctors table while the nurse would organize all the tools. Finally she would clean my hip bone area with alcohol before injecting me several times with an anesthetic which burned so much I hated it. Then she would inject a large needle syringe into the hip bone. Sometimes it would still hurt so it would have to be removed and an anesthetic injected into me several more times. The large needle syringe would be injected again pushed through the hip bone before pulling the end of the syring back to suck out a good amount of the marrow from the bone. After they get enough they remove the syringe.
Next, they would insert a tool (in the picture right below) and the nurse would proceed to chip away at my bone because they need a sample of the bone to test. It was like taking a hammer to a nail and chipping away at a rock. Yes. It hurt like you wouldn't believe. My father was actually there for one of the biopsies and told me afterwards that he felt like he was just witnessing a surgery. He said a lot of blood was all over the place and couldn't believe that I had to go through this almost every other week!
Post transplant was a long and hard process and since my brothers bone marrow didn't take it felt like the whole thing was such a waste of time. It was a constant reminder to me that all I had hoped for didn't come to pass. Emotionally I struggled to understand things. Everything technically was on point or even more so but it didnt work, so whyyyy? The doctors had no answer because there wasn't one. Sometimes it takes and sometimes it doesn't. For some months my sickle cell pain was like it was when I was a preteen which was great and i was willing to live with that! But then as the months went on my pain began to progress until it was like I never had a transplant. I was so sad. I kept thinking what do I have to look forward to--living like I have these past few years for the rest of my life??? Am I to never work a day in my life from here on out? Am I to suffer like this forever? Is this the new normal?
At another one of my post follow up visits with Dr. Filicko she shared that both she and Dr. Flomenberg felt that they should try a second time and see if with a different donor I would be cured. Dr. Flomenberg is the head of the Oncology department, a great person, especially for one in his position--it's rare for a person like him to be so down to earth. Anyway, I was flabbergasted because I hoped but I never thought they would even consider it let alone do it, since to me, I felt like a lost cause when it came to it actually working. She shared how they felt I was part of the family and that they basically want me to be well. So though I don't look forward to the process I look forward to what the process can prayerfully give me--fREEDOM! It's an emotional roller coaster planning and doing a transplant but its one many of us who don't have much choice have to take if we're lucky enough to have it as an option. Not every sickle cell patient qualified. In fact I know of a friend who also met with Dr. Filicko and was not accepted as a candidate. I am truly grateful to Dr. Flomenberg and Dr. Filicko for helping me and not giving up on me!
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This post first appeared on The Unveiling Of Sickle Cell Anemia~A Life's Story, please read the originial post: here
