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

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!***

in Transit

It seemed that before turning 2011 that I'd be recuperating from my transplant but something went wrong. Just less than two weeks before my transplant my bone marrow doctor sits me down and tells me it can't happen due to discrepancies with my insurance. The thing is that I've learned since then that my insurance hasn't denied me coverage or refused to allow me to do the transplant. In fact, I appreciate so much how they have tried to convince the hospital and my doctor that I am totally covered.

This has been one of the hardest things I've had to go through in my life. Since chosen to do the transplant I was told not to get hospitalized much since it would prevent me from doing the transplant. Why? Because it would show that I'm too sick to do the transplant. Which is weird since it is because I'm so sick I need to do the transplant. I have done everything humanely and beyond--possible to stay out of the hospital that I even wonder how I've been able to endure all the pain at home. The delay with the transplant with no apparent date in sight to be transplanted I've not succeeded recently in staying out of the hospital. I feel like I've jump over hurdles to get approved for the transplant and now I'm being left to rot.

I've been consumed by this whole process and I had to stop myself because it was seriously becoming too much. I felt like I was running around with my head cut of trying to prove to the hospital that I wasn't denied at all. I'm emailing, calling, visiting, and it became an everyday thing to where I realized that I was trying to make this transplant happen. It's as though I finally woke up and realized that I didn't end up coming to Philly and finding these team of doctors on my own who then suggest the transplant giving me a lifetime of an opportunity. All this happened because God is looking out for me and has found a way to help me get close to living a normal life. Once I brought the focus back to God I just kind of let everything go. There is no way and absolutely nothing that I can do to make any of this happen. If it happens its because God deems it right for me.

I let the insurance company do what they do and the same with the hospital. That's really all I can and want to do. I can't wait to learn what my fate is though. I do have faith that if this transplant doesn't happen God will provide me another way to deal or live with the amount of pain I go through. God willing this transplant will happen and God willing I will be cured.

I do feel that it'll all come to a close soon so I ask for your prayers. Thank You.

Today was a ShoCkeR!

I woke up this morning Encouraged but I'm sitting here discouraged. Waking up this morning I had an idea of how this day was going to be.

Today was my appointment with Dr. Filicko (my bone marrow Dr.). The goal of the appointment was to finally set a date to begin the transplant, sign some papers, draw some bloods, and leave with a direction, a plan for my health. Instead, as I sit there in the doctors office with my mother waiting as I think with glee on how soon my life will change. Dr. Filicko enters and encourages me that ALL the tests I've had to do for the transplant have been surprisingly Great! She then shares with me that the goal was to get me started on December 10th and be done just days before Christmas. Wow, I'm so excited till I stop and realize she used the word WAS in her statement.

There's a problem she says. Your insurance which we thought would cover your transplant is not covered. She goes into an in depth explanation about what the problem is and why I can't make the December 10th date. As she's talking all I can do is sit there as tears begin to roll down my face. What is happening is the thought running through my mind and does this mean the transplant is Off? No, my doctor says. She shares that the transplant will cost anywhere from $500,000-$1.0 million and that if we were to still go through with it I would be accosted by the billing department. I told the doctor that I am willing to do whatever it takes to do this transplant even if it takes every single penny I have to show good intention to the powers that be. The doctor doesn't want me to have to live that way but I counter with: look at the way I'm living now, I have no life, I'm in pain every single day, I can't sleep b/c of how much pain I go through, I can barely walk at times. I really can't live this way forever.

Hearing about this setback brought about so much emotion. All I could think about was living in pain for a longer period of time. My heart broke especially because I came into the appointment elated and eager to hear the date set for the procedure and instead I got a bomb--blowing the date back to the unknown.

Dr. Filicko suggested I try to find a Benefactor (someone who would donate/fund my transplant). Now, she said whether I do that by trying to contact a celebrity who would be willing to donate (by contacting an association) like Sickle Cell Disease Association of America or SCDAA or family/friend who has the means to make such a donation. So if there's anyone out there thatis reading this an would love to help me or know's someone who would be willing and able to help me please contact me. You can find my contact information at: http://www.wandefightsforsicklecellanemia.com/, http://www.facebook.com/group.php?gid=134212590888, or comment below with the information~> I would be eternally grateful.

So as of this moment the transplant has been placed on hold. I believe with ever fiber of my being that God has put me through all of this and has taken me to Philadelphia specifically to finally bring me some peace in my health by providing me with the opportunity to do this bone marrow transplant. Though this is a stumbling block. I truly believe it is a momentary one and that I will do this procedure and be Cured! Its just a matter of when and how!

I ask for each and every one of your prayers to help me get through this very difficult time of my life. Thank you from the bottom of my heart!!

In Your Prayers

Written on Wednesday, March 17, 2010 at 7:40am



As many of you all know from reading my blogs, I have been very very sick. My health doesn't seem to be getting any better. In fact, in many ways I have gotten worse. Now, I couldn't sleep tonight and can't believe that I am still up but I am writing to ask you all to keep me in your prayers and to specifically pray for my health. My health has gotten to the point where at my doctors appointment yesterday he talked to me about doing a bone marrow transplant. Now, for those of you who do not know or are unaware of what a bone marrow transplant entails~it is a very serious surgery. I would have to find a bone marrow donor willing to undergo surgery to give me some of their bone marrow (prayerfully one of my brother's or parents). I'd also have to pray that my body does not reject the bone marrow along with other side effects.

I have exhausted every option. So all that I am left with is to trust God and pray for the best. Please pray for me and for whatever transpires with my medical team that they do their best in consulting with me and in any decisions they make. And if I do decide to do this, please pray that I come out of it healthier than I am now.


Thank You So Much!


Love,
~Day