The truth of the matter is...

  

You know what? I'm in a lot of pain right now (11.3.12) and writing this is the only way I feel I can distract myself. I was hospitalized because as I was walking to my doctors office I had to stop several times to gather myself by trying to control my breathing because I couldn't breathe and I was having pain at the same time. The social worker I just happened to run into suggested I go to the emergency room (ER) since the doctor I was going to visit was at jury duty and the person sitting as the replacement wouldn't have an open appointment till hours later.

I went to the ER and was treated with oxygen, a nebulizer treatment, and finally ketamine. The thing with treating my pain with ketamine is that I have to be admitted in the hospital in order to receive the treatment. Ketamine is the only drug that helps my pain now, not narcotics or transfusions. So my options are more than limited. It's frustrating to even think about it. To be honest it scares me to think about the reality of my fears. The options I have to treat my pain are really one thing: ketamine. And without it my fears have been--what will happen if I build a tolerance to it? Will I be left with no way to manage my pain?

The truth of the matter is that I'm in the hospital about seven months out of the year. That's NOT NORMAL!! It's at the point where my doctors have been discharging me home even though I'm still in really bad pain. They say I'm on too much ketamine and that's not good for my QT (refers to a group of disorders that increase the risk for sudden death due to an abnormal heartbeat.).

In spite of my pain I was told that I have to be discharged adding--there's nothing more we can do. Can you imagine that conversation? I know what she's about to say and once she tells me- imagine what I must have been feeling. I felt numb. I felt like OMG it's gotten to the point where I'm totally on my own?!? Then she asks me if I have any questions. I mean I know it doesn't matter what I say because once your told you have to leave whether your in pain or not-- what else is there to say? I knew no matter what I said things wouldn't change but I understood that she was just trying to give me something to quiet the hurt (I think). I appreciate her tact. I can't imagine being chosen to be the one to tell somebody that their pain can't be helped--to their face!.

When they  started discharging me in pain--I'll be honest--I was angry because all I could see was my pain and when your in pain things like conversations or decision making are ignored because all I can think of is God Please Make IT StOp--Take it Away! How could I see anything else? I've learned to digest the different phases of my disease so I stopped being angry at them, stopped being frustrated with everything and just pray and leave things to God. God will guide me and whatever needs I have. Especially when it comes to my disease. Whatever God allows I take in. When I think of the team of docs that work with me--I see how hard they have worked and continue to work, I think of the many meetings they had on my case, and I think of the consultations they've had with me--throughout the process keeping me informed on ideas for my pain management . Its been a long process of which I've always been included in.

I realize the work they've put into me and I thank them for it but where it ends for them it continues with me. I can't step away and say I've done  what i can. My pain is hard to control and being left with no options is a huge reality for me. For instance, my discharge. All that's in store for me is endurance.

So I've made the decision to just get what I can from my docs upon admission into the hospital. When they discharge me I’ll just continue to pray that whatever treatment I get will be sufficient. I'll just lay at home in pain and pray to God for his grace. I've been told I need to learn how to deal with the pain as it is. The thing is all my life I've had to endure the pain and there's no getting used to Pain!! Could you endure the pain of someone  pulling or ripping off your arm? That's how the pain feels sometimes. Or what about hundreds of knives being stabbed into your body? Another--not being able to walk or talk because of the pain. My family has had to carry me because of the pain. This is an even scarier journey I'm about to partake in and it seems I stand alone in this phase. I appreciate all the time and hard work the hospital staff has put in. I wish there was more they could do but they've done enough I guess. I wanted to blame them for the intense pain I've had to endure when discharged and at home but why? I thought they gave up on me but that's unfair.

It's hard for people to empathize with the pain I go through. Most don't understand. Some friends have walked away from me because of the pain they saw me in. I went along with the justification that I'm hard to be friends with because its true. In the past there were phases in my health back then. It went from the doctors treating me with pain meds, to their being frustrated with not being able to find an answer for my pain despite their efforts, and finally their frustration meant since they couldn't figure things out I needed to be discharged. I could always predict when the doctors would want to discharge me. Despite all this I would have months and months after discharge to live my life, enjoy my twenties, and be a good Christian.

Now I’m isolated/not social because I have no free time to be social between my hospitals admissions and my recouping period. I live with my father and his wife so I can get treatment from a specialized hospital nearby. I’m on disability because of how sick I've gotten that it keeps me from being able to work. I’m single, while all my peers are married and having families. I've seen a lot and endured a lot and lived a lot differently than most. Don’t feel sorry for me instead please Pray 4 me! I would die for the chance to get back into life but my life is here-now!- and I’m grateful for the amount of energy God spends on teaching me hard and necessary lessons of all sorts. Despite how I hate the control Sickle Cell Anemia (SS) has on my life, I Would Not Be The Woman I Am Today without it!

The truth of the matter is that it will always come full circle to me, my disease, my thorn, my problem. This disease chose me not the other way around. Sometimes I feel people forget that. Even my doctors. Though they're all great people I know if they lived a week in my worst pain they'd really understand and sympathize with Sickle Cell suffers in such a different light. God will guide me through what's to come, good or bad! This disease has directed everything in my life, I’m just along for the ride. God has a plan for me! God has a plan for YOU! Jeremiah 29:11-13.

A 2nd Transplant! Here we go AgAiN!

As many readers know I had a bone marrow transplant a year ago. It's a shame but for some reason my body rejected the bone marrow. The reason is unknown to myself and my doctor. I thought it was all over and all that hard work it took to get through it was for naught other than the lessons I learned from it. Anyway, I thought that was it but the doctors I worked with were so supportive of me that they approved for me to have a second transplant. Of course, I cannot use the same donor (my brother, Fola) for this next transplant. So though for the first transplant my father was excluded from being tested because of his age, they have decided to allow it for this transplant because they want me to not have to live with this pain anymore and they want to open up doors for more SS patients to be transplanted. My youngest brother Ayo will also be tested! 

It's crazy! It was a difficult process the first time around. I just have to have faith that God will get me through this as well no matter how tough it might get. Though it was a tough process, it went relatively well the first time to the surprise of my doctors and I. My biggest fear was that I would have a crises throughout the process but I only had pain at the beginning of it. My biggest fear this time around is that it won't be as easy. 

I know what to expect this time so if it doesn't go as easy I know how bad it can really get. Anyway, it will only exercise my faith especially if for a second time I reject my donor! I don't know if I can take another rejection. Before I get ahead of myself my father and brother have to be a match before any of that can be done. If neither my father or brother are a match then the transplant is not going to happen. I asked if we can go to a bank but since I'm the first transplant patient and its a new process they can only use family members. Once it begins to grow and more patients get transplants then a bone marrow bank can be used.

So I again ask for your prayers. Pray I find a match and pray the transplant is a success!!

Thank You! 

Ketamine

Pain management has been a challenge my doctors have had to deal with. The only way any of my doctors have known to tackle this challenge is by increasing my opiod use. This was the case until one of the best doctors I've had the privilege of working with Dr. Viscusi (pain team) began to revamp the way they treated my pain. Instead of just giving me increased doses of morphine they added to the roster Ketamine. Ketamine is an analgesic drug known to be used for different health issues. It has recently been known to be used as a pain reliever for crisis pain in few cases. Ketamine affects the sensitization of spinal neurons and so affect the development of neuropathic pain.

Ketamine is sometimes used for emergency surgery. As a random aside: I've been told it has been used as a horse tranquilizer. It's a pretty intense drug with huge side effects. Many people on Ketamine have to be monitored since it can cause psychotropic side effects like hallucinations. When on this drug a nurse or doctor is assigned through a 24hr/day period to monitor me in the event something happens or if I need an extra dose.

The highest level of opiod I've been on was 1200mg a day of Morphine. Ridiculous right? It's insane to confess that even at that dosage I still wasn't getting adequate pain relief. 1200mg a day was only as an outpatient. Once admitted I would also be maxed out on dilaudid PCA yet still not get pain relief. So Dr. Viscusi suggested to the team of doctors and nurses working with me that I begin treatment with Ketamine. I would become the first sickle cell patient to use this drug for pain management. My morphine dosage was dropped from 1200mg-600mg a day and about six months ago the pain team decided that those high levels of opiod were actually contributing to my pain as opposed to alleviating it. So I began a tapper of the morphine that went down 10% every three days as an inpatient.

                                          Ketamine:

It was extremely tough to get off the Morphine since I've been taking large doses of it for years. I went through intense withdrawal. I kept asking myself how do drug users do this but in time I was finally completely off it and Dr. Viscusi suggested my not being medicated with any other opiod but instead manage my pain at home with alternative drugs such as Butrans (also help with withdrawals), nortryptaline, and Lyrica. As an inpatient include those drugs and an infusion of intravenous ketamine. The highest level of Ketamine I've been on is 40mg.

Since I'm no longer on opiods I've been finding it difficult to control my pain at home so the pain team has prescribed me with nasal ketamine. Once again I'm the first SS patient to be prescribed it. In the 2yrs (or more) I've been on Ketamine I never knew that there was a nasal spray for it. I was told that it is used in cases of people who have severe migraine's. Though I do have migraines I use it not for that but for my pain crises (attacks). Since my discharge from the hospital about a month ago I've used it once and I've remained out of the hospital which is a victory for me since recently I've been returning back to the hospital a week or two after my discharges. So staying out though its been only a month is a real victory. I only use the nasal ketamine when my pain is at its worst and I think I may have to go to the hospital. The less I use it the more likely it is to work when I do use it. So my goal is to keep from using it too much because if my body gets too conditioned to the use of this drug I fear that there are no more options for me out there. I was lucky Dr. Viscusi knew about this drug but my options are getting less and less. I don't know why my pain is as extreme as its been since graduating from college but I fear that if the pain that I go through scares me as it does now then what am I to expect in 5yrs or 10yrs? Thank God for Ketamine. If I wasn't on it then imagine what dose of Morphine I may be on now.

A step at a time, a day at a time!

Eugene Viscusi, MD, director of Acute Pain Management at The University of Thomas Jefferson Hospital

Dr. Viscusi is one of the best doctors I have ever had the pleasure of working with. I am now 31 yrs old and since I was a baby, starting with the hand foot syndrome and jaundice, I have been fighting every year til now with this disease. In all these years I have had many encounters with doctors and nurses that were good & bad. Those doctors that were bad were individuals that made me feel small, were in-compassionate, frustrated that they didn't understand why the disease was affecting me the way it was and as a result would get frustrated with me. 

However, the good doctors and nurses were patient, and understanding. They took into account that my form of the disease wasn't my fault and instead doubting/disregarding me and my input--would work with me in trying to stabilize my many hospitalizations. Dr. Viscusi is the latter. He's not perfect but I just wanted to write a blog in his honor because no matter the ups and downs I truly respect and am grateful for how hard you work on my behalf. I know on my end that I too can get impatient and scared but you always match me with assurance and thoughtfulness. Dr. Viscusi just has a lot of wisdom. He knows what kind of medication to give me for that specific symptom. Unlike doctors I've had in the past that write Rx for the sake of writing them. I've been given medications that have totally shut my body down. Docs have written huge and uneffective doses that would leave me lethargic at times. For instance, I used to take 450mg of morphine three times a day in addition to taking other pain meds! However, Dr. Viscusi saw how uneffective it was and how it was actually hurting me and adding to my pain--instead of easing it. So they tapered me off of  it while I was in the hospital. Though I went through intense withdrawals, it was later obvious to everyone that because I was off of the morphine, my spirit/demeanor was lifted. So, on doctors orders, I am no longer taking narcotics~across the board. If it wasn't for Dr. Viscusi I'd still be on those large doses feeling weak and tired all the time and I would still be in a lot of pain.

Dr. Viscusi has always been open and honest with me about my care. He's always been willing to take some risks to get me to a point where he can ease my pain. Ketamine is an analgesic drug used in operations to keep the patient sedated. Well Dr. Viscusi wanted to try using that drug for my sickle cell pain! He was open about what the side effects were and the fact that this was an experimental trial. This drug has never been used with sickle cell patients before, so I would be the first. I was fine with that. I'm always open to new ways of dealing with my pain! Plus, I trust Dr. Viscusi! Well it worked! Ketamine helped my pain (didn't cure it) and I still use it till this day! No other Doctor has been willing to work so hard for me and take risks for me like Dr. Viscusi! I am truly grateful for him and so I wanted to take the time out to show him how grateful I am for having him as my doctor! All the work that you do does not go unnoticed, ThaNk yOu!!!

Working with the set of doctors and nurses that I work with has in many ways become a family. As many know, families have their ups and downs but in spite of it they remain family. Well in spite of the hard times I do appreciate you all and want to thank you all (PURPLE TEAM, PAIN TEAM)!!!