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!

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)!!!

In My Weakness I Found Strength

You know every day this summer I got up and felt alone. I had no one there with me. At those moments where your thoughts and mind go--u know?  I'm in my room thinking and wondering when will this all end? Will this end? I did this transplant because God told me to & I hoped that with this would be the cure. Never did I think that the transplant process was not for my disease but for my self.

I put all my hopes, prayers, and will into this transplant being a success and curing me but in the midst of it all I've found that the transplant has cured me but not of my disease but of my self. I've always been such a driven person and used my situations as my push or start ups to life's challenges. How could I have forgotten that the biggest challenge of all was to be my inner will. For so long I have relied on people, friends, family to be my launching point but God has been teaching me over and over again with it all going over my head until now. My launching point needs to be God. And needs to be me. In the end when things are at its finest of times and hardest of times family won't be there nor will my friends but my Savior--Eloi (will be there) and I alone will be there.

All my life all I've wanted was to feel wanted, loved, appreciated like anyone else would but all my life God has put me in situations where I've felt unloved, unappreciated,or unwanted. Why? I guess you can ask God that but if you ask me then its because God wants my character, my core, my everything to be nothing but humbled. Having this disease and living with the pains that it presents is the hardest. I've been learning and continue to learn that God definitely has a plan for me, a plan to prosper me and not to harm me but to give me a sense of direction and drive that will get me through life, it's challenges and the surprises that come on its way. I can no longer rely on friends or family to be my point of direction. God is teaching me that He alone is my point of direction and that as life goes on family and friends may disappoint me but Never will My God disappoint me. He is my ROCK & my everlasting strength so No, this transplant was not a bone marrow transplant but God's ways of spiritually transplanting my fears and concerns with his spirit of peace and serenity.

You know going through this transplant process has been so much more than an eye opener. It has opened up my life and the people in it. I've learned that some people are there for a season and others for the long haul. Though I wish those that were here for the season were here for the long haul I am truly grateful for the time that God has put you in my life. I pray that another season comes and that when it does we'll both be in a place where we can maybe be there for one another for the long haul.

My strength comes at the time of my life when no one else is there to help--it's just God & me and we lock arm in arm and walk right through whatever the challenges that present itself.

I've learned that though I do need friends and family by my side I can survive without them. If they can survive without me then I can survive without them and our lives can move on as it is destined to. Though I wish we could survive together. I've learned that survival means you need to live your life. So go and live the Life that God has called you to. Whatever the needs and desires God will provide--just trust in him and it will be okay--but in every single weakness look long and hard because there lies the strength you never thought existed.