In My sHADOW.

Siblings aren't really acknowledged when talking about sickle cell and that's a shame. I have two brothers one is two years younger than me and his name is Fola. The second is seven years my junior and his name is Ayo. Ayo happens to be Autistic (high-functioning Aspergers). I know now that growing up when I got sick a lot of attention went toward me and the youngest, Ayo, because we needed extra care. I never thought that my being sick would make my younger brother Fola feel unacknowledged but I see it now, as an adult. When I got sick almost every single time my brother wouldn't be in the hospital room visiting me but instead in the arcade room on the pediatric floor I was on. He and I have never talked about this but I know it bothered him and may still bother him.

Not that long ago Fola and I had an argument which wasn't good, and he said some hurtful things not only about me but in regards to my illness. I'm not going to repeat it here but I think he said those things because he resents how this disease affected the family dynamic growing up which in turn affects how we function now. My brother and I were truly the best of friends when we were younger sharing everything but that changed over time and at times I feel like we're strangers now. I miss our old relationship, I miss him.

I wonder if we'd be so distant now if I didn't have sickle cell and we had only normal family problems not constant issues dealing with pain and suffering.

I guess I'm writing to share how much of an impact health problems can have on a family. My hope is that those of you out there that have similar issues in your family--make sure you take time out to make the other members of your family feel special. Have Mommy & Me/Daddy & Me Time so that your other kids feel loved and special. It's possible Fola felt like I got all the special attention and therefore may have thought my mom and dad loved me more than him, though that is absolutely not true. Set aside special time for the siblings to hang with you so good memories are made casting aside the bad one's. Let your child who has the health problem also have some "special time" with you, allow the whole family to have "family time" so more fun & great memories are made than the harder one's.

As a social worker and as I get older I reflect a lot on the past. As I reflect, I'm gaining some wise lessons that I hope will serve me well when I have my own family but I hope it not only serves me but you as well. No matter what we do the people in our family will be affected one way or another but as long as everyone feels loved and appreciated as a whole, that's is all that matters.

BY THE WAY: hApPy bIRTHdAy Fola!!!

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!***

This is My Life!

                                                                               

I'm laying here and wondering where life is taking me. In my last hospitalization I was approached by two doctors of the team. They had a stern conversation with me about how I get sick too much and come to the hospital too much and that they don't know what to do. They can't help me and suggested that I stop coming to the hospital so much. I told them I have no control over how much I get sick and shared how truly frustrating it is for me to basically live my life in the hospital. I asked them point blank if they were telling me not to come to the hospital anymore and they didn't say no but they did say they would be discharging me (though I was still in a lot of pain).

It's a conundrum for me because I truly do feel so lost sometimes because I'm stuck in this never-ending maze of pain and they're telling me to get out but I don't know the way. I need help. I felt so so discouraged while they were talking to me. Imagine, a team of doctors I look up to and am so thankful for has now told me--No. I know that as difficult as it is for me its difficult for them as well. I know that they've been working on solutions, investigating new possibilities for me, and that they desire the best for me but at that moment I felt they aBANDONED me. I feel like they've hit a wall and instead of pushing through as they always have for me they instead decided to lay their sword down and move on.

What Am I Supposed to do with that? Where do I go from here? How do I move forward without the guidance I so desperately need? I do not know.
                                                                     

It's been about a month or so now since being hospitalized and every single day that I've been out has been a battle. These past two weeks my pain has increased exponentially. Almost everyday I have the thought of if I go to the hospital today will they take me? Will they let me stay? Then I lay back down because I know that if they did take me it would only be to send me back home the next day and I don't want to go through that. It would only make things worse for me because I'd be so frustrated that I may get even worse and have to deal with it at home by myself and its already unbearable.

I've been in so much pain that my whole body has been shaking. At first I thought my laptop was overheating and shaking as a result (it does that) but it was off, it's--->>it's me! I've been taking my pain meds, drinking a whole lot of liquids and trying to stay positive but its really hard. Anyone that know's me knows that I will try and do anything I can if it's possible it may help my pain. I do acupuncture, try to get massages every couple months, try new drugs, see a pain psychiatrist (ie. teaches you to hypnotize yourself, gives you strategies on blocking the pain etc.), behavioral therapist (ie. gives me techniques to distract me from my pain, meditation, distraction exercises etc.), whatever I can possibly do to minimize the amount of pain I go through I will definitely try--with reason. But there's only so much that I can do. It only makes things worse that the team of doctors I so desperately respect are so frustrated with my case that they've now transferred that frustration onto me. They've begun doubting me all of a sudden, and growing impatient with me, they're tired of me. All of a sudden they question if I'm truly in that much pain.
                                                                               

It's hard because I feel like I'm supposed to prove it to them somehow but How?!? If I could I would. If they could walk a mile in my shoes for a week of what I go through I'd wholeheartedly allow them to experience what I go through on a day-to-day basis. So I'm left with this. This seems to be my dESTINY! 

I remember when the signs started while I was in college. There would be days where I literally couldn't stand up with exhaustion. I'd sit for an hour before I was able to get up and go to my dorm room. My pain 

was now becoming worse than I was used to. I remember seeing my doctor and asking what's changing in me? All he could say was its different for each person. Some get better with age while others get worse. The degree of fatigue and pain that was different would come up periodically but overall I would get sick just as I usually did. But it did get worse as the years came by. By the time I graduated it was like a dam had bROKE and a new version of my illness had arrived. But I could still work, live life, hang with friends, go out! Fast forward to now and I can barely make it to my doctors appointments. I keep replaying the progression of this disease and I'm dumbfounded. Is there anyone else out there like me? Am I alone in this? I can't be the only one affected in such a way as this!

I really have to leave it to GOD! My strength is not my own. People tell me all the time how strong I am and what an inspiration I am but while I'm silently thinking: I'm not strong! I'm strong because I have to be. I'm sTRONG because God is my strength. This blog is for all sickle cell sufferers out there! You're not alone in this fight. We have good days and we have bad days but we pUSH fORWARD! I hope those of you learning about this disease through reading stories like mine are getting a good idea of how difficult our lives are and how pAINFUL not just the pain is but the process of living with this disease. I hope my story gives you better insight.

Writing this blog helps me and I pray it helps you too.




*Please pray for me if you can. I need all the help I can get. Know that I'm always praying for all the sickle cell sufferers out there!