Life-After-Transplant

                                                           

Dr. Filicko (my bone marrow doctor) was a constant in my life as soon as I was accepted as a patient for transplant. I was nervous in the beginning stage but then I just prayed to let all that worrying go. Dr. Filicko was so excited to begin the transplant being that I was the first sickle cell patient to do the transplant--it was a historic event for not just Dr. Filicko but for Thomas Jefferson University Hospital (TJUH) .

      

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! 

***Feel free to ask any question in the comments below!***

I Am Not My Hair.

I went through several days of chemo. For the first week, it was twice a day at 10am & 2pm to be exact. I handled it really well, so well that I though--ok I can handle this and it's not as scary as I thought it would be. After the first week I still had my hair in place so I thought maybe I won't loose all my hair and instead all that I may encounter would be some thinning at the most (but I was told that the chemo has a delayed reaction so I may not get the affects till later).

Then I began my second phase of chemo (which I was unaware of at the time--was a very potent chemo) according to my nurse, this chemo intimidates even a veteran cancer patient who undergoes continuous chemo treatments. Now this set of chemo had one that ran for 48hrs straight and another which I received at 10am for two days straight. It was a pretty immediate effect for me. Not long after they ran I began to feel extremely fatigued and beat up as though I was "run over by a bus" is how one nurse put it. I could barely keep up with what was going on around me or do my normal activities such as go for walks and do my day to day stuff that was important to building up my strength and maintaining my spirits so that the whole process doesn't take hold of me and keep me down. At this point my spirits did begin to go down and it was harder than ever to even get out of bed let alone think of going for a walk or going to the game room to keep my spirits up. One of the nurse technicians did pull me aside and gave me a sort of pep talk, reminding me that each time I pull myself out of bed and do something--anything that pushes my recovery closer and closer and builds my spirits up more and more will make it easier to then get out of bed. She reminded me that though it is normal & exactly what all Bone MArrow Transplant (BMT) patients go through I can't give in and dwell in that hole that is ever so tempting to stay in. Not long after this needed pep talk even though I felt like road-kill I decided to pick to my feet and go for a needed walk. Though it was difficult pushing myself, it was rewarding because I did feel a bit stronger and lighter in spirit.

Around this same time was when my scalp became very sensitive to touch and even as I rested my head on a pillow my head would ache. Then I noticed my hair was beginning to thin and soon noticed more and more hair coming out on my comb. The eye opening experience was when I was washing my hair and all I could feel was all this scratchy thing around my neck and ears only to look down at the drain to see all of my hair caked all around me. At this point I was using a face towel to was my hair instead of vigorously washing with my hands and nails because of how sensitive my scalp had become. Though I knew my hair would fall out, experiencing it and seeing all my hair on the floor and all over my face towel is another thing. I found myself getting a bit emotional seeing the final product in the mirror where minutes before I had the normal me with a full head of normal hair no longer there. Now all that remains are fuzzy hair patches throughout my head. Over the next couple of days those fuzzy patches were more balding than fuzzy patches.

The next thing for me to do is to get a wig. My mother was going to purchase one for me but the bone marrow unit's social worker shared that they will purchase the wig for me. She provided me with a catalog to look through and choose from. It's hard picking a wig because I have never worn a wig before so its a weird thing for me to do but many woman wear wigs so it should be fine. I think my trepidation comes from fear of looking like I have a dead carcass on my head. I want the wig to look like I have my normal hear. I don't want to look fake in any way but there are good options in the catalog I have and I can only hope to choose the right one that will fit me and look great on me. Until the wig comes in I've just been wearing a hat and using scarves to keep from getting chills because my scalp has been getting allot of breeze lately, lol. Once I get the wig you'll see my new but hopefully natural look where you'll hopefully question whether or not I even have a wig on. Until then I'm left thinking of that song that INdia Arie sang named I Am Not My Hair which is so true in its lyrics. This is only a temporary occurrence and in about 6 months all my hair will grow back. Nurses have shared that many patients have different hair grow back in and most times the hair that grows in is better. So prayerfully I get an even more beautiful head of hair in the upcoming months.

A New Look.

Before starting the bone marrow transplant I wanted to cut my hair in preparation for the chemotherapy & radiation I will receive knowing I would loose my hair anyway. From literature that I read it said that my scalp will become very sensitive and if I were to have longer hair it would be a more irritating than if I were to have short hair. To make the whole process easier on my head and on me emotionally I decided to cut off all of my hair or as much hair as I could prior to treatment. I mentioned emotionally because I can only imagine to effect seeing my longer hair falling out all around me.

The pictures below are a kind of video gallery of the whole barber experience. My brother decided to join me in getting a hair cut and a good friend Michelle was willing to be a friend and support by being by my side as I journal this process.

Bone Marrow Transplant (BMT) has Begun

It's been 15 days now and 4 out of those five days I've been on two separate Chemo regimines. I'm taking it well so far but I'm told it'll all hit me in a day or two since it has a delayed reaction. As the first ever Sickle Cell Patient undergoing this procedure in this hospital it is a huge deal to them and to me. I hope they get what they need and vis-versa as we make history together.

I've been very open about living with this disease because I feel like someone has to be. Someone needs to speak up so people can understand what we as Sickle Cell patients go through. I could just send a post about Sickle Cell Anemia and leave it at that but putting a face, a life in the forefront will make a much better impact on people hearts and encourage them to learn more and more about Sickle Cell Anemia. Sorry this paragraph was a bit of a side note but a much needed one.

Though I've handled the chemo well there has been some affects like: 102 fever, a metallic taste in my mouth, and weakness. I know it seems like a lot but what I mean by I'm handling it well is that, I've not let it weigh me down, I'm walking around the Bone-Marrow Unit (BMT) unit, my spirits are up and I'm holding my food down so far. As a result of the fever I have I've been put on I.V. antibiotics as a precaution to possibly having bacteria. They took some blood cultures to determine whether or not I do have bacteria or something else. The results so far came back negative but it is monitored over a couple of days so I hope that the first go around -->being negative is a sign for the next 'round of results.

The second round of chemotherapy has been the worst. The intensity is allot more and its affect on me is 2 folds. My body is beyond weak and fatigued, it feels like lead is in place of my bones. I have begun to loose my body hair and my scalp has started to feel tender to the touch. Since my white blood cell counts are now at Zero I have to be very careful for mouth sores. To prevent mouth sores I must wash my mouth out with salt water after every meal & snack. If not then I will get a mouth full of sores and be unable to eat let alone drink. Once my white count begins to rise I won't have to worry about the mouth sores. I do have to worry about bleeding out since my platelets are also low and since they are low my blood is unable to clot or glue together-- leaving me susceptible to bleeding out.

The chemotherapy is what brought my white blood cells, hemoglobin, and platelets down in order to undergo the transplant. Throughout the chemotherapy the nurses have to watch out that my white count goes to zero, my hemoglobin stays above 10 and my platelets stay above 20. By the time the transplant comes my white count will be zero, my hemoglobin 10, and platelets 20. If my hemoglobin goes below 10 I get a blood transfusion (of which I've had two) , and if my platelet goes below 20 I get a platelet transfusion (of which I basically end up getting every day due to the effect of the chemotherapy).

In Vitro Fertilization Finalization

I finally finished the two week invasion of IVF treatment. Man, giving myself those shots was not easy at first but when you have to do something it becomes normal. I don't know how those that suffer with diabetes handle it. I'm doing this treatment not by choice but by necessity. Because I'll be undergoing a bone-marrow transplant I'll be getting chemotherapy & radiation leading to me not being able to have children. So in order to still have my own children I was given this great opportunity to store my own eggs for the future. I'm so grateful that I will still be able to have children with the man I fall in love with and marry.

I had to give myself two separate shots the first week then it grew to three shots a day for about three days then four shots and finally the day before my egg removal (10in all) I took one end of the cycle shot. The process was weird for me because getting an injection is nothing new to me since I get them all the time dealing with this disease but to have to do it myself was the game changer I had to get used to. I would first wash my hands with anti-bacterial soap and them get the syringes and medications out. Then depending on the dosage I would draw into the needle the amount needed, find a spot in my lower abdomen or upper thigh and inject. I'm not going to lie, injecting myself would sting at times and the syringes would be really full making it longer to inject myself.

I noticed that over time I had begun to get fluid retention, hand & feet swelling (as though I were pregnant). It's a surreal experience that I find had to explain. The main part was finding a donor and thinking through all the characteristics I'm looking for. Height, hair color, ethnicity, etc. All these things you wouldn't normally be thinking off but I find myself having to.

The morning of my egg retrieval was horrible because I was in an enormous amount of pain from my sickle cell anemia and left the emergency room to run about 2hrs away to get the procedure done. After the fact though I couldn't help but think in terms of: my child is on a petri dish waiting for me. Wow. But the injecting myself and going into the doctors office every three days to do an ultra sound and to test my levels to determine the dosage I inject was now all finally over!

Now I can move forward with the transplant without fear and worry that I can't have children. I'm now open to just getting through the transplant and recovering!

My Brother, Fola.

I have two brother's Fola (2yrs younger) and Ayo (7yrs younger). Yes, I'm the only girl! Growing up my brother's and I were extremely close. We were best friends but something happened on the way to change that. As we hit our adolescents we basically grew apart. Growing up in my household was hard (I could share my whole sob story but I won't).

My childhood was a bad one--leaving my family, more specifically my brother's and I to endure allot. In doing so my brother Fola dealt with things differently which led to our growing apart. My youngest brother Ayo and I though have been able to maintain that close knit bond that we developed in our youth. Over the years I've tried to get back that brother, sister, friend bond with my brother Fola but you can't go back in time and I can't take away the struggles that led us to where we are today.

When I was looking for a donor I thought beyond logic and I thought the brother I have the closest relationship (Ayo) would beyond a doubt be the match I so desperately needed. But to my surprise the name that came from my doctor wasn't Ayo but Fola and what she said next blew me away! Apparently, all they needed for me to find a match was 50% but my brother Fola was 100% match and 100% usually takes place with twins of whom my brother and I are not. So, I'm first thrown aback by which brother is my match and thankful I have a match at all but even more flabbergasted that Fola is a 100% match.

I know that there are no coincidences so it's definitely God at work and I've seen him at work in my brother and I's lives since finding out that he was the match. Since finding out he was a match, I do believe that Fola and I have gotten closer and that it was God's design to use this experience to not only strengthen our relationship but to reconnect us on a deeper level and to more importantly strengthen him as an individual.

Fola deciding without hesitation to do the transplant really touched me because I really wasn't sure what his decision would be but he has jumped at any and every opportunity to take tests, travel for blood-work, and he has opened himself to risks. So I write this blog in honor to my younger brother Fola who is in a major way saving my life. With the frequency and level of pain crises that I go through and at such a young age doctors have suggested that my quality of life would get worse and I may endure several organ failures and even death. This transplant is the only answer both the doctors and I have to the infinite number of questions my level of illness seems to bring up.

I am thankful that my brother Fola and I have more conversations. I'm grateful that upon finishing tests needed as a donor and heading back to New York that my brother now stops to encourage me that if I were to need anything at all I should call him. I'm truly grateful that my brother now out of the blue will call me just to see how I am and check up on my treatment when hospitalized. I am really and truly grateful that my brother Fola and I are no longer strangers in the same family but are growing together now rather than apart as we did years ago.

I want to encourage all of you to work on those relationships that were severed and meant allot to you because if you don't you will only continue to miss out on the love and friendship that individual can bring. I know for my brother and I, it took some time and it took my health reaching the end of its rope to begin bridging and rebuilding over that gap between us. It will take time but the important thing is that we're both working on it. I encourage you to do the same.