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 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.

C o c k t a i l ~ M e d i c a t i o n s

As you can imagine I take allot of medication to alleviate pain and maintain my health. To really understand how much drugs I take look at the pictures I've provided. These meds have there individual function while as a whole provide treatment for me and trying to control my disease.

It's allot taking down all these pills. Many times I feel as though I'm eating a meal when I take these pills. I take all but 5 of the pills in the above pic twice a day. This specific combo is my night time cocktail. Here is a list of the medications I take on a daily basis:

Hydroxyurea 1500mg (cancer medication used with sickle cell patients)--once a day,

Folic Acid 1mg--once a day,

Opana ER 300mg--2x a day equals 600mg a day for pain,

Opana IR 60-80mg--every 3hrs as needed for pain,

Lyrica 75mg--3x a day for nerve pain,

Ibuprofen 600-800mg--every 4-6hrs as needed for pain/inflammation,

Trazadone 100mg--once a day sleeping pill,

Hydromorphone 8mg tabs (8 pills)--every 4hrs as needed for pain,

Prochlorperazine 5mg--as needed for nausea,

Cyclobenzapr 10mg--3x a day for muscle pain,

Nicosan 350mg--once a day for sickle cell maintenance,

Morphine 400mg*--3x a day for pain

* I no longer take Morphine it has been replaced by Opana

Ignorance

I just heard a nurse speaking loudly after I asked her for pain medication saying in an annoyed and ignorant voice: these Sicklers are supposed to be in and out but they're asking for medication Q1 (every hour). I don't know which nurse it was but I felt it necessary to bring it up with my nurse so she could take it back to whomever it was. So upon approaching my bedside to administer my pain medication I tell her what I heard a nurse say and shared with her my feelings toward that nurse's statement~>I am the one in pain and on the stretcher while the nurse is pain free and  able to stand. So who is truly the inconvenienced one? I say inconvienienced because that is how she made getting pain medication seem like but if I'm not mistaken it is her job as a healhtcare professional. My nurse' response wasn't one of surprise but of defense saying: oh, I don't think she was talking about you I think it was about another Sickler (Sickler is the term they use to call those of us who suffer from this disease), as though whom the nurse was directing her statement to changed the view itself. I shared with my nurse how insignficant it was whom that nurse was talking about and instead I highlghted the ignorance that accompanied that statement.

This whole experience was truly another verifcation as to how ignorant and insensitive people are towards those of us who suffer from this disease. If a nurse (whom has been educated on Sickle Cell Anemia) can display such a level of candor then what am I or other sufferers to expect from the day-to-day leyman individual?

To give another perspective:
It's like being a nurse to a person who is sick with cancer and the patient hears that nurse in the midst of her impatience and frustration about having to care for them. When a patient who is going through so much and dealing with such a hard disease like cancer hears a nurse ranting and saying: these cancs were supposed to come in and out and not ask for pain relief Q1 (every hour). Now, I ask you~does that sound right? No. It doesn't. So why would that same nurse who I highly doubt would have made such a statement about a cancer sufferer feel entiltled and careless enough to make the exact same statement about a sickle cell sufferer? 

Here is something to think of:
Peoples perceptions and what is tolerable. You see sickle cell sufferers are always having to fight not only the disease but the intolerable (such as presented here) on a constant basis. 

Some ppl just don't get it.

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