Where SICKLE CELL fALLS w/ BLACK LIVES MATTER ✊🏽 ( Happy Black History Month !!! )

Woman in Pain by Wojciech Babski

I tOO used to think we shouldn’t solely state that BLACK LIVES MATTER ( BLM ) but that ALL LIVES MATTER. But then George Floyd...

A video surfaced revealing the “arrest” of George Floyd begging for his life, begging for air, Calling Out to His Mother as he was held twisted and dying. After watching the horrific video of George Floyd’s arrest I was shocked, disgusted and afraid. I now understood that though ALL LIVES MATTER, It’s BLACK LIVES THAT ARE AT STAKE and so it’s BLACK LIVES that MATTER. From slavery till today, African Americans have and continue to be negatively treated, marginalized and killed. Systemic racism, the center of it all, is alive and strong. It’s unspoken of and unaddressed but ingrained in the DNA of the American society. 

Well, the continued shootings of Black Men, Black Women, our Black Children scream aloud seeking attention that there’s still so much wrong with how we treat those that look different from ourselves. No one’s been listening. A black man had to die in such an atrocious way for people to finally hear, come together and make a stand against the brutality Black Men endure within the hands of the police. If there was no video that captured what happened. Where would we still be today? The American society would still be unaware and unchanged. Except for those in the black community who experience it everyday. 

The video helped America to see in vivid detail what many have been blind to or refused to see. Though there have been videos that have existed showing similar fates. This one captured the eyes, ears and hearts of the Nation ( 🇺🇸 ) and the World. ALL LIVES, yeah, but America had yet to put any importance on the Black community, BLACK LIVES. Saying BLACK LIVES MATTER is a statement, A CRY OUT that indeed BLACK LIVES do MATTER !!

In the Sickle Cell Community many black lives are lost. Although, in almost every listed top 10 disease in America for some reason, it’s Blacks that are proportionally affected so much more than any other demographic. With Sickle Cell Disease many of us take up the personal mantle and become Advocates who spread the word on Sickle Cell (what it is, who it affects, and how you get it).  

Racism (systemic racism) which thousands have banded together to protest, let’s not dismiss it, has a very big stronghold in the medical field. I hesitated in writing this piece because I thought, maybe this isn’t the time to bring to light this specific issue. I hesitated because so many healthcare workers (doctors and nurses) have been working extremely hard to tackle the pandemic that has taken over the world. Doctors and nurses have put themselves on the front-line and many are even dying of COVID-19 as they contract the virus from the very patients they care for. 

But wait, that’s what starts it. You hesitate and say “at a better time,” “later,” or “not now.” But then no such time comes. 

I first want to say, I give my heart to all the front-line workers, especially the doctors and nurses charged with taking care of COVID-19 patients. The sacrifice it takes to put oneself in harms way in order to care for people is simply beautiful and courageous. And I know that a large number of medical staff have lost their lives in an effort to help tame this pandemic. What they are all doing, there is no one else who can and so they’ve worked and worked. Overworked, overstretched, tired, scared, and mentally drained these doctors and nurses still go to work the very next day despite the large number of lost lives they witnessed the day before. I Salute You All !!

I am truly grateful for all of their hard work and fighting spirit. When I go to the hospital in this pandemic I too have witnessed their spirit and am so thankful for what they’re doing. However, none of these take away from the fact that systemic racism takes place in the medical field. The few times I’ve brought it to hospital staffs attention. It was either blown off, not taken seriously or filed away someplace never to be seen again. 

           

But the truth is we shouldn’t talk about Black Lives Matter without talking about Sickle Cell Anemia, one of the diseases which affect more African-Americans than any other ethnic group. Sickle Cell Anemia is a blood disease that predominantly affects those of African American descent. In the United States, Sickle Cell Disease occurs in 1:500 African-Americans (Southwestern Comprehensive Sickle Cell Center, 2007). Sickle Cell Disease occurs in many other races and ethnicities, also. Sickle Cell Disease occurs in 1:58,000 Caucasians, 1:1,100 Hispanics (eastern states), 1:32,000 Hispanics (western states), 1:11,500 Asians, and 1:2,700 Native Americans. About 1:12 African Americans carry the Sickle Cell Trait. (source: txhealthsteps.com)

The numbers are clear on how it affects more Black Persons than any other group. As a result, I’ve learned that Sickle Cell sufferers aren’t given the same considerations, assistance or Trust as those who suffer from others illnesses. One illness for example, Cancer. Now Cancer is a predominantly “White” disease of which much attention, research and education is dedicated. When a Cancer patient says they are in pain they are more likely to be believed than doubted. They are also more likely to be given the necessary treatments that are needed with no question about the pain they are going through. With Sickle Cell Disease many myths, biases and prejudices exist. These prejudices go mostly unaddressed even when they are spoken up about. 

The stigma that goes along with being a Sickle Cell sufferer is astounding. I know b/c I’ve experienced those prejudices. I’ve been face-to-face with the racism and negative attitudes that many Doctors and Nurses have. 

Not so recently I was overcome with pain from my head all the way through my body, my bones, to my legs. It was as though I could feel each sickled cell that flowed through my veins. As I was laying in the ambulance grabbing and massaging my body as best as I could (though it merely soothed me than ease the pain). All I could do was count the minutes and seconds till we finally arrived at the hospital - emergency room. When we arrive and after triage, the struggle begins to get me treated. It takes some time and after many tries to get a vein. Once we do, I can then get the pain medicine that can help ease my agonizing pain. The doctor, after three rounds of of treatment sees how the pain medicine took effect. After sharing that it only took the edge of my pain, the doctor decides to admit me. 

I get to the floor about 3am or so. The journey I now have to take involves a revolving door of nurses who try to get a better vein so that I can get all the medication that I need and possible transfusion if necessary. It takes hours with three nurses trying to find a vein. Two on one arm and one on the other. They stick and prod with four tourniquets on my arms so my veins pop up.  They stick me with needles about five or six times. However, it’s to no avail. So the doctor now has to bring in a sonogram machine to guide him into gaining access to a vein. 

He looks at the site on my arm he’s found with the sonogram and injects into my skin. Soon after, he looks away at the screen in front of him and begins moving the needle around in order to find the vein and gain access, which he finally does!! I exclaimed in joy and thanked the doctor. I’m joyful because I finally get to begin the treatment I need (PCA) that can help to stabilize my crises.

PCA or Patient-Controlled Analgesia, as defined by the National Cancer Institute (NCI) Dictionary of Cancer terms is: a method of pain relief in which the patient controls the amount of pain medicine that is used. When pain relief is needed, the person can receive a preset dose of pain medicine by pressing a button on a computerized pump that is connected to a small tube in the body. 

I write in such detail so you can then understand how I feel when after all of that and only after a few days of treatment. A doctor from Hematology-Oncology comes to my room without even examining me and declares that my levels are stable and I will be discharged the next day. To educate you all, when it comes to sickle cell anemia, though one’s levels may stabilize does not mean that the patient is not in pain. Again, Blood levels do not equal ( = ) the amount of pain one is in !!! So I shared with the doctor exactly that. 

Well, that seems to have been a mistake because the doctor went off on me yelling, asking me if I’m telling him what to do. If I’m a doctor? Do you think I don’t know that? I’ve been a doctor for 30 years and you’re telling me?! I tried to appease him and explain that I was only reiterating the fact that though my blood counts are fine I myself am not and I continue to be in extreme pain. But the doctor so matter of factly said that I look comfortable and don’t look like I am in pain at all. So no matter how much I cry out how much pain I’m in, the doctor has already long ago made up his mind about the state of my body. But the last straw was when he began by saying that I was on too high of a dosage of pain meds at home. I reminded him that it is my doctor that prescribed that dosage. Which I’ve been on for years. This doctor then told me it is because I am a drug addict. That if I wasn’t, then there would be no need for such a high dose of meds. 

I was completely and utterly flabbergasted. It took me a while to collect my thoughts. But then I understood. His racial prejudices are what summed up his treatment of me. After he left I laid there dismayed and shocked about how free he felt to be so blunt and in my face he felt he could be with his racist behavior. No matter what I said he wouldn’t listen. He took away the PCA treatment I was receiving and knowing how my pain gets worse at nighttime I wept in my bed scared of what the night may bring. What scared me even more was knowing I would be sent home with the amount of pain I was still enduring. 

I felt trapped with nowhere to go and with no one who could help. So I went home and tried managing my pain as best as I could with the meds I had. However, none of it was enough and I ended up having to call for help. This time when the ambulance came I asked for a different hospital and we were off. But as we were on our way I was so anxious and worried. Would this time be any different? I’ll have to once again go through the sea of needles.

The above was just one example of the racism and prejudices we encounter as sickle cell sufferers. Nurses are the first faces we see when going to the hospital and many times they are no different. I’ve had nurses search my personal belongings (my purse) because they believe I’ve brought drugs to the floor. 

What are we left with if we don’t comply? Especially when we’ve gone through all the injections and sticking (to get blood). If we don’t comply, I’ve been told I wouldn’t receive any pain medication or they’ll refuse to treat me. Many times I don’t feel as though I’m even treated as a human being. But where else are we to go? Who else is there that can help us? That’s is why many blogs and social media like my own exist.

All these fears cripple me at times when I’m in my bedroom in pain contemplating whether or not I should go to the hospital. It pushes me to endure more and push off going so I don’t have to possibly experience such things. But yes, racism exists everywhere and though doctors and nurses are “supposed” to help us. They are people. People comprised with their own beliefs and sometimes prejudices. But unless a video comes out or a recording exposing such things, I doubt that much attention will be paid. I just pray that another form of George Floyd won’t have to take place for actions against racism toward Black Persons who fall ill and are left in the vulnerable hands of such doctors.

 

I'm BaCk❕

It's been a while (about 2 years) since I've written a post and I'm sorry to all my readers for that! I've been through a whole lot since my last blog post and to sum some things up, I hope in this post I can share what some of those things are!!

I moved out of New Jersey/Philadelphia area and am now back in New York! Everything that brought me to the Philadelphia hospital soon began to come to an end. The doctors and nurses that I trusted so much and that I felt were like a family, apparently did not feel the same way about me as I thought. Their frustrations with their inability to understand and address the reasons why my disease is so progressed led them to begin to question me! For some reasons as many of you know, my hospitalizations last for months on time but they began to push for my discharge days into my admittance into the hospital. Why? Because they wanted to get rid of me as soon as they could regardless of whether I was still in pain. I remember begging a doctor to let me stay once because I was in so much pain and I was scared to go home in that much pain. No matter how much I pleaded and tried to be an advocate for myself it all fell on dead ears. I tried talking to the pain specialist that I trusted so much but that too was a dead end. Huh. I felt so alone. At that moment in time I had been away from New York--my most familiar place. No contact for years at this point from my NY friends, I was living in NJ/Philly area where I knew no one and was too sick to get to make new friends so all I had was my family.

As you imagine what my emotions must have been like, now try to understand why I felt so alone and even more isolated and frustrated when the doctors and nurses I trusted and thought understood my situation began to question everything about me. Looking into the eyes of the person you trust only to get challenged, and doubted about being sick was hell. On my last admittance into Thomas Jefferson University Hospital (TJUH) they actually asked security to escort me out of the hospital. A result of my telling them that they can't discharge me when I'm still in pain! They didn't agree.

I only moved to the NJ/Philly area because I wanted to go to TJUH since the sickle cell program at Montefiore that I was going to, closed down (and at a point when my disease took such a drastic turn)! So once they kicked me out of TJUH I had no reason to stay and so I moved back to NY!

Coming back to NY has been a difficult undertaking. I've gone from hospital to hospital in search for my new home (hospital). It finally led me to Columbia Presbyterian or New York Presbyterian (NYP). At NYP it was very interesting outcome of how my first doctors appointment went. It was a normal visit, talking about what has been going on with my health all these years, the Bone Marrow Transplant (BMT) I had five years ago, transfusions and exchange transfusions I've had, migraines, surgeries I've had, my Fibromyalgia etc. We talked through it all and the doctor all of a sudden suggested that because of the severity my illness it isn't a bad idea to think about doing another Bone Marrow Transplant and that he would write a referral and I should see how it go! I didn't give it much thought because my last transplant failed and where would I get another donor? I figured my mother and I would just meet with the Doctor to see what he would say, thinking that probably nothing much would come of it. Upon going to see the BMT Doctor all of a sudden a stream or a team of people came into the room to talk about 5 or 6 in total, all focused on me. Well, they talked as though they were going to do the transplant. I thought they would review or question whether or not I was qualified to do another transplant but they said they would do it and it was possible with the same donor I had in the last transplant. They talked about how much things have changed in five years and that there is an anti-rejection drug I can take in precaution, in addition to other things that can take place. I signed consent papers to get all my information from the hospital I did my last transplant. I made other appointments with the BMT team so we can continue on with the next steps. All those appointments have led to this moment. I'm only a week away from doing the transplant. There's only one condition! That the last test before the transplant clears me into being able to have the BMT. My appointment with a liver specialist is this Wednesday. So please pray for me everyone! I truly need your prayers that everything is okay with my liver and that there will be nothing that keeps me from being able to have the transplant. Please pray that my life can finally begin as a result of this transplant--that I can be cured of this debilitating disease that has only brought me pain, sorrow, isolation, and has mostly brought doubt and questioning of the truth of my pain by doctors and nurses all my life.

Everyone this is my chance! My last chance. Please pray!
 

A new fiGhT!!!

For years I've been going through a lot pain and as a result continuously going in and out of the hospital. Both the doctors and nursing staff have grown weary of my visits. I've been inactive in my blog posts and maintenance of my Facebook page because of how ill I've been. I guess I was just burnt out and needed some time to regroup.

I've been wondering for years now why my form of sickle cell anemia is specifically worse than the average sickle cell sufferer! I recall my freshman year in college asking the doctor why my crises (pain attacks) have evolved so aggressively. I remember being so heavily fatigued that I could not stand to go to my dorm room, let alone my classes.

Without my knowing, that was the beginning of something new. I have been saying for years now that it felt as though there was something else wrong with me aside from the sickle cell anemia but no one took heed to my insight. Instead I would just continue to go in and out of the hospital and bear the doubts from my doctors and nurses that I was truly in pain. I always cringed at the idea of going into the hospital and feel like I had to prove to everyone that my pain was sincere.

Well in my most recent hospitalization, I had really swollen legs, knees, and feet. My knees were in especially intense pain. So much so that I couldn't walk without the aide of a cane or wheelchair. Prior to my hospitalization when I would go to the store I would have to use the store wheelchairs for mobility. The experience of walking around with such aides was not only something I had to get used to but it was also an embarrassing experience. Getting many looks from the other shoppers especially my peers would make me wonder what they were thinking. Having those thoughts as I look back now it's embarrassing that I was that self-conscious!

My knees were so swollen that the doctors had to numb an area of the knee and use a large needle to extract some of the fluid that was in it. The fluid was tested and came back clean. There was no infection. So what was causing all that pain? My pain doctor also questioned the symptoms I've been having and why my pain just doesn't seem to let up. Even with large doses of medication I don't seem to get relief. 

Well, my pain doctor whom I truly respect and am grateful for suggested that I get a consult with Physical Therapy, and Rheumatology. Physical therapy was unable to help me but Rheumatology surprisingly was able to help. More so than I expected. They ran some physical tests on me and asked me a lot of questions! Finally they were able to tell me what was wrong. I was diagnosed with Fibromyalgia! Fibromyalgia is a chronic disorder characterized by widespread musculoskeletal pain, fatigue, and tenderness in localized areas.

       

I know right?!? Unbelievable! So I don't only suffer from Sickle Cell Anemia but Fibromyalgia as well! Sickle Cell I know about. I've been fighting that battle since I was a babe. I know almost nothing about Fibromyalgia (Fibro) but believe this--I'll learn! Sickle Cell is a hard, knuckle-down fight but I fight. I might a well take Fibro down as well! 

When the doctor shared my diagnosis, I'll be honest with you. Streams of tears were just rolling down my face non-stop for about ten minutes. Then I wiped my tears and got to work asking all I could think of about what Fibro is, how I distinguish between Sickle Cell and Fibro, what meds I should take etc. 

So for years I've been suffering from this disease without knowing! Many things in my life began to make sense now with the diagnosis! For instance, the heavy fatigue I would randomly get while in college, the increased pain, and like I've mentioned before--why the pain meds didn't really work on me sometimes. I just kept reviewing everything in my head trying to make heads or tails of it. When I shared my new diagnosis with my pain doctor, he too figured it could be Fibro I was suffering from but questioned it. Thank God he requested the consult. If not I would still be in all this extra pain with no way to explain it--to deal with it. For a couple of years now I've been felling like the doctors and nurses didn't believe me. I've felt that way more this year than any other year. I cant get that day out of my head. The day two doctors came to my room to pretty much reprimand me in front of my mother and another patient in the bed next to me for coming to the hospital a lot. They told me it needs to stop. The said I should just deal with the pain at home. Ugggh, that hurt so deeply. Even now as I share this it hurts but now for them to see that I was not making it up, I was not seeking medication, I was not crying wolf. I was in a lot of pain, my pain was valid, they should've respected and considered the best from me--their patient, they ought to show more respect and consideration. If they hadn't dismissed my pain they would've caught this diagnosis earlier!

These are some heavy things that I'm going through but the fact of the matter is there are a lot of us Sickle Cell (SS) sufferers that have dual diagnosis! Many have Lupus and SS! I want you all to know that you are not alone no matter what disease! I know the fight is hard, I know it's overwhelming, I know you want to just give up sometimes. That's all normal and very Human of you! But know that there are others going through the same fight! Go to my FaceBook Page! Go to the upper right hand side of this page and CLICK On my FaceBook Page Icon or On FaceBook--search for: WANDE FIGHT'S FOR SICKLE CELL ANEMIA and leave me a post or write me a message and we can talk about it. Just know that you are not alone and the things that you feel are valid!  

There are DaRk dAys!

         

I am so frustrated right now with everything. A lot of people say that I'm strong but the truth is-- That's not the case! God somehow gets me through each and every day!!! Though I push on in spite of the major hurdles before me there are moments of extreme weakness. The strongest of us aren't always strong 100% of the time!

There are days in which I CRY OUT to God for Mercy, for Help, for taking Away my sadness. I love this blog and I am grateful to all that take the time to read it but I'm always honest about what I go through. Though many of us are soldiers in this fight to stand up under the pain and anguish we endure there are those bad days. 

***I'm going to talk about those days. In spite of what I share I know with all my heart that God is taking care and Loving me through the fight.***

I get burnt out sometimes with always having to fight this horrible disease. I get angry that I can't be a normal person, living a normal life! I miss the days I could just go out and hang with some friends and talk about normal things having nothing to do with Sickle Cell. I Long for those days again. I get extremely sad that this is the life I've been called to. 

I don't want the pain, I don't want to think about whether or not my pain is bad enough for my doctors to allow me to go to the Hospital. I don't want to think of when I do go will they find a vein so I can get my meds before they finally give me a PICC line (A PICC line is, by definition and per its acronym, a peripherally inserted central catheter. It is long, slender, small, flexible tube that is inserted into a peripheral vein, typically in the upper arm, and advanced until the catheter tip terminates in a large vein in the chest near the heart to obtain intravenous access. It is similar to other central lines as it terminates into a large vessel near the heart. However, unlike other central lines, its point of entry is from the periphery of the body the extremities. And typically the upper arm is the area of choice (1)). I get sad and angry that there's nothing more that the doctors can do for me! I lay here in pain and my eyes fill up with tears due to the agony I'm in! As I type I can barely see the words I type before you. 

Huhhhh, it's not always Sunshine and Clouds! There are extreme storms that I think many of us with Sickle  Cell don't talk about enough because we don't want people to think of us as weak! The truth is we are all Weak. We just choose to be stronger. That doesn't mean that those dArK days don't come on occasion or for some of us more often than we'd like. 

***Know that the pain we go through is Extreme and Amazingly Tortuous!***

I don't want to be in this fight! I didn't piCk this fight. It was chosen for me. Since I'm here there is AbSolutely no way on God's Green earth that I won't fight till my dying day! We may look strong but we're strOng because we have to be! Honestly, what is the alternative? I know that there are many of you out there that have contacted me and shared with my about sadness/depression and the difficulties we face every single day with this horrible disease. Know that you are not alone!!!! The alternative only eats away at us making our pain worse in some cases because of the stress! 

I WILL NOT LET THIS DISEASE WIN! YOU SHOULDN'T LET THIS DISEASE WIN! We are truly in this fight together!!!

Know that you are not alone in this! We all have those days that drag us done because its just too much but there is light at the end of the tunnel! With this Blog and with my family I get to talk about my frustrations with this disease, DO the same! Talk to someone and unleash the burden you carry. Once you do, it won't make everything better as though nothing happened but I hope and pray it will give you the support you need in that person you felt so strongly enough to share your burden with!

It's a lot this disease and many people don't know what we go through but I do--Others do and More Will! This is my Cross to bare and as I open up my life, heart, fears, and circumstances--I hope it will help those that are learning about this disease to understand us more, to Help us more!

Thanks for listening or shall I say reading! I hope what I've shared helps some of you. If anyone wants to just talk then leave me a message in the comments below or by going to my Facebook Page by clicking on the Facebook badge at the top right corner of this page!

(1) PICC line definition provided by: http://picclinenursing.com/picc_why.html

Who's your AnChOr?!?

It's only the beginning of this journey. I'm so nervous. Going through the bone marrow transplant once was difficult enough but a second time is worse because I know what's coming. I also know that in additions to all the details it takes to do the transplant one of the most important parts is taking it all in emotionally. I was ready for it last time but for some reason, this time I'm not centered like I should be. Maybe it's fear of falling short again or fear that I won't handle this transplant as well physically like I did before!

I have a great support group in my family and I have a great church that feeds me spiritually. I find that when going through something major like this one needs something strong to keep you steady and grounded. Support is the one thing I forgot to mention in previous blog posts but support is a major part of getting through the transplant process. 

I thank my mother who packed her bags and moved into a strangers home just so that she could be with me all day in the transplant ward. Once visiting hours were over she'd go back to her room to sleep and rise to come see me again. She got her room and board through a program that provides lodging for family members of those undergoing transplants. I thank her for taking all that time off. I thank her for holding my hand through it all. I mostly thank her for showing me she loved me by being there because that's exactly what I needed. I needed someone to listen and just be there physically so I knew i wasn't alone in this fight! Going through something like that alone isn't good at all. 

Many of us who suffer from sickle cell need that kind of support and it should be given no matter what the circumstance. From the major hardships of the disease to the lesser. Whether it's a transplant or a crises (pain attack)! Many of us will suffer from sickle cell anemia All Our Lives and it gets really hard at times to fight, push forward, and NOT Give Up! Having a support system makes this fight a little less burdensome! So I'd like to encourage you if you know someone with the disease or have this disease--Just be there!!! Call once in a while, let the person vent, cry, pray, or just simply sit with them. With that I know we can fight a little lonGer!

Where I get my strength from, is God! I know not all of us believe in God but those of us that go through all this suffering need that spiritual AnChOr to keep ourselves from wailing back and forth as the waves pass. With God--when I feel I have no more fight in me--I all of a sudden have that strength that I desperately need. Start with some scriptures daily, going to church, or start praying! Start somewhere! You never know where God will take you!

Thank you Mom!
Thank you Dad for taking me in!

Thank you Ayo (youngest bro) or your unconditional Love!
Thank you Fola (younger bro) for your sacrifice in not just giving me your bone marrow but enduring what it took to give it!

~~~And thank you GOD for how you watch over, LOVE & guide me through the hardest of times!~~~

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!***