Wednesday, November 4, 2015

Hello out there. A little update since my last post. At that time I was concerned about whether or not I am truly a candidate for a BMT. Turns out I am. Since then my counts have dropped...(Hemoglobin anyway.) I did end up needing a transfusion. but i haven't needed platelets since August.(nice) They still range between 25-32 they usually don't go lower or higher than that.

I learned that the pregnancy made my AA symptoms worse. My counts were dropping faster and I needed transfusions more. Although right now i feel fine.(still tired and frequent headache. nothing new) My counts are still dropping, just at a slower rate. So I'm looking at transfusions every 3-4 weeks instead twice a week or weekly.

I did have my intake appt. for my transplant. My doctor also noticed the new trend in my CBC's and we both decided that it would be best to do another biopsy just to see if anything has changed. The first couple of biopsies I had showed the cells in my marrow was at 11%. For my age i should be at 70%. The showed i was at 10%. So my doc says because of this and bc I am still transfusion dependent . That transplant is best. He even went over my slides with several other Hematologist to get other opinions bc he knows how much i wanted to make sure that this is the type of treatment i needed. And they all agree. So I am going to trust in my doctors and move forward with the transplant.

Right now i am just waiting for the call from my Transplant Coordinator to tell me definitely when my Pre-Transplant testing will be. It's looking like Monday. Once they know my brother is healthy enough to donate and I am healthy enough for transplant. I will be going in within 30 days!!!! I'm kinda looking forward to starting this process so I can put this all behind me. I'm ready to get back to life as I know it.

I'll post again after my testing to tell about how that went.

Monday, September 28, 2015

To Transplant or Not to Transplant...

Since my last post I met with my BMT doctor in Pittsburgh and they are in the process of getting everything together for my transplant. So the next time I go to Pittsburgh is for my intake appointment where i meet the whole team and learn about the process, risk and what not. Now here is my dilemma. My CBC at this appt showed that my counts actually stayed the same since the previous appointment the week before.

Hemoglobin: 9.3
Platelets: 28??
WBC: I'm still not sure. It's still within normal range.

Now this is where i raised my eyebrow. MY COUNT STAYED THE SAME!! For the first time since I been diagnosed my counts actually haven't dropped.

Now I went to get a CBC done again last Thursday and my hemoglobin still stayed the same and my platelets actually went up!! To 32!!! So what does this mean? I have not been able to talk to either of my doctors about what this could mean. I have been trying to reach them with no response which is really irritating. I did have a nurse return a phone call and said she think the Doctor still wants to go ahead with the transplant. But that's not good enough for me. I need to know why they think this is the best treatment versus something else being that my counts are actually holding. So that's where I am now. I get another CBC done this coming Thursday. I'm a little eager to see what my counts look like this week. If they go up like they did last week I will definitely demand to speak to the Doctor immediately. I truly don't want to have a transplant if i don't need to. The way my counts are going I feel like i can afford to explore some other treatment options.

So stay tuned...

Monday, September 14, 2015

And We Wait...

OK. I'm just going to fast forward and just fill in the blanks from the past month and a half until now. (I wish I would have known I was going to write a blog, I would have started awhile ago.)

My first post left off with me making one of the hardest decisions I ever had to make in my life. That being said. I decided to terminate my pregnancy (no judgment please) It was a very hard to decision, I weighed both pros and cons before making the decision. And it is something that I deal with everyday.

At time of diagnosis I was living in Cleveland, Ohio. I have recently moved closer to my family in a small town called Farrell, Pennsylvania. I decided to move because my doctors thought I should be closer to family for more support, and I agree. So now after many transfusions, biopsies, and a traumatic procedure. Here i am.

I met with my new oncologist. After going back and forth between ATG and CYCLO or BMT. We decided based on age and health history. I'm a good candidate to go ahead with the BMT. Thank God my brother is the perfect match!! So thankful. Now I have been referred to a transplant doctor in Pittsburgh, PA. My first appt with this doctor is on this coming Thursday. (September 17, 2015) I'm so nervous. I don't know what to expect. I have no idea what's about to be done at this appointment. But I'm also looking forward to getting this process started. I've been through a lot already just to get to this point. I'm so ready to be on the road to recovery and be CURED!!!!

My last CBC (last Thursday)

Hemoglobin-9.3(after transfusion the week before)
WBC-(i forgot?? but i do remember doc
saying they were actually ok)

Current Symptoms:
occasional light-headedness and dizziness.

I am open to any stories, questions, advice, prayers and well wishes. Of all the blogs and google articles i read. I know I still have no idea what i am up against. I am taking this journey Head On. I have no choice. I have a lot to live for. Can't Stop Won't Stop.

Saturday, September 12, 2015

How it all began...

Hi. My name is is Kamara. (Pronounced: (ca-MAR-a). I have been diagnosed with Severe Aplastic Anemia. I decided to write this blog to document my experience as it happens just in case there is someone like me who has never heard of the disease and want to know what they have to look forward to. Or for anyone who just wants to follow along on this journey.

(Today is actually September 11, 2015 that i decided to write this blog, so I'm actually backtracking to give the back story of when this all started. I don't remember every single detail. But as i get caught up to present day. I will post day to day as things happen.)

It all started (Friday June 19, 2015. I was about 11 weeks pregnant and was in with my OB-GYN for a routine prenatal appointment. At this visit, my doc decided to listen for a heartbeat which is not usually detected until later, but she wanted to try just for kicks. And there it was. Heart rate of 164...She seemed pretty excited. Actually more than me...Which she noticed. I explained to her that I was happy, just super tired because I worked midnight shift the night before (11pm-7am) I told her of the nausea i was having and just generally " not feeling good" I thought was caused by pregnancy and thought not much of it. She decided to prescribe me B-6 vitamins and Unisom. These two together should help with the nausea and help me "feel better"....After I was done with the Dr. I was sent to the lab for routine blood work. (My first for this pregnancy) and i went home. My appointment was at 2pm i got a call around 5pm that evening...It was my doctor. She was a bit upbeat as usual but proceeded to ask me how I was feeling. Feeling confused. I replied. I'm OK. i couldn't figure out why she was calling me when i just saw her earlier. but whatever. She proceeded to tell me that she got a call from the lab and that my blood counts were low and that i should go to the nearest Urgent Care as soon as i could to repeat my blood work because she thought there might be an error. I couldn't go until the next morning for lack of transportation. I had to work another midnight shift that night and decided to get checked the next morning.(Saturday). I got the labs drawn and went home for sleep. This day went on as usual, weak and tired from working all night. (I thought) Then i began to worry about these lab test i had done. What does low blood count mean? Then i remembered. Back in November 2014 i was hospitalized for a UTI left untreated turned into a Kidney Infection. I was there for 5 days receiving IV antibiotics and fevers. While i was there they noticed my blood counts were low. they never told me how low or anything, just that they were low...OK??? I was told to follow up with the Dr. who took care of me during this stay following my discharge. I did. He took more blood work and told me he would look into it and would be in contact. And that was that. Nothing ever came of those low blood counts. I didn't press the issue because like he said he would contact me. I thought no news was good news and moved on.....Now here we are. Saturday night at work i still felt sick. I noticed just talking to one of my co workers i was losing my breath. I was extremely tired and nauseous. I explained to my nurse( I am a Nurses Assistant in a nursing home) that i was working with what happened at my appt and that i wasn't feeling good and i felt tired. She allowed me to close my eyes for a little while being that our unit had only had 6 residents and sleeping for the night and if they needed anything. She would take care of it. Sunday morning i went home and slept until noon. My Dr. called me and said my blood counts were low and that i should go to the E.R I may need a blood transfusion. whoa. I told my fiance' what the Dr said. And i was on my way. 

Sunday June 21, 2015

I was admitted to the hospital and got so much blood taken from me for this test and that test. I was also given 2 bags of blood. And i was assured by one Dr. that i would feel so energetic after getting this blood. Even my mom (who came to visit along with my sister and her kids from an hr and a half away to check on me)..told me about people she knows who had blood transfusions said they felt like "brand new people"...Not the case for me. I was still tired. The next day I was asked by some Dr's would i be OK with getting a bone marrow biopsy done. It wouldn't take long they said..."we can do it right here in your room, no longer than 30 minutes." I was like OK. whatever lets do it...I wanna know whats going on with now. So they said "OK, we can do it at 2:00" By this this time. My fiance's mother was sitting with me and she offered to stay during the biopsy if i wanted. I told her if her son (my fiance') couldn't make it in time sure she can stay. I didn't know what to expect. They made it seem minor so why not...Meanwhile I'm steady calling my fiance' to see where he was and what was taking him so long. (I have two daughters and he was trying to get them together, it always takes him longer to get them ready than me...must be a man thing lol) Anyway. I rushed him to hurry up and figure it out. Get it together and get to the hospital now! Nothing against his mother i was glad she offered to stay for the biopsy. But i actually preferred he be there. The plan was for them to swap out. She was going to watch the girls at her apartment, which actually happened to be literally right next door to the hospital and he would sit with me through the procedure. It was probably around 2:30 at this point and the Dr's actually haven't even been in yet. So that was good since my fiance' still didn't get there either. He finally made it and they made the switch...After sitting and waiting. Dr's finally came and decided the weren't going to do the biopsy that day. They decided that I had a B12 deficiency. And decided to give me B12 shots. I was kept for another night for more testing, shots and observation. 

Tuesday June 23, 2015

I was discharged this day and told by the Dr to pretty much live in a bubble. God forbid i had endured an injury that would cause me to bleed because my platelets were low. Platelets are cells in the blood that clot and basically prevent you from "bleeding out." Mine were so low that my Dr thought it was a good idea to take me out of work until further notice. Only because I worked in a nursing home. And sometimes residents are unpredictable and combative, or literally anything can happen, even by accident. He didn't wanna take any chances. He was super paranoid. More than me. I still didn't know what any of this meant. They scheduled me at the Cancer Care Center to get B12 shots for the the next week straight. And then a follow up that Tuesday after my last shot with the hematologist.

Tuesday June 30, 2015

I got my last B12 shot after a long week of waking up early just to get these things. Then I waited to see the Dr. 
She had her nurse come and get some blood so they can check my blood counts. She asked how i was feeling. I told her i felt the same as before. Not better, not worse. I read online and heard from people that b12 would actually give me energy...not me... During this week I noticed i had some blood in my stool and i told the Dr about that. She asked me how much blood i saw. "a teaspoon? a tablespoon? an ounce?''..umm. awkward. I wasn't sure. There was just blood in my poop!
The blood work results came back just a few minutes later. And they didn't improve. My counts were still low. They didn't come up at all. Actually my platelet counts dropped after getting the blood transfusion the week before. So i was taken back to get a platelet transfusion that day. fun fun. After the transfusion my counts were checked again and only came up a little. But not alot. She thought maybe i had something called ITP and prescribed me prednisone, also at this time my Dr thought it would be a good idea to get the biopsy done. I was moved to another room where they set up for the procedure and i met the nurse. I had a local anesthesia put into my lower back. and she went from there. It wasn't too bad. Certain parts I could actually here the Dr scraping against my bone. (yikes) but it didn't hurt. Just some pressure. Also a little stinging. But nothing major. I was actually just sore later. But that was that. And i was sent home because it would take a week for them to have results. I was to come back next Tuesday to get labs drawn again.

July 2, 2015 was a regular day. I was still tired. As always. Actually more tired than usual and short of breath. I blamed it on the pregnancy and went on. I was still moving around slowly because i was still sore from my biopsy. I remember just doing household things cleaning up while watching my girls play outside..My fiances' phone rang and i called him down to get it. He walked away on the phone talking. I could hear him from the other room talking loudly and i was actually curious what was going on. I figured he would tell me when he got done. So i gave him his space. He came to the room where i was. In dead silence. Which i thought was odd since he was just so loud in the other room. I asked, what? what's wrong? what happened? He didn't wanna say the words....
His mother had passed away....
I lost my breath. This was the same lady who sat with me in the hospital and willing to sit with me through my biopsy. She seemed fine. Same free spirit. Full of life. No signs that anything was going on. We couldn't believe it. Still can't.

R.I.P. Ms. Traycee. 

Tuesday July 7, 2015 

Now this day i remember. This was a bad day.
I was on my way to my Dr's appt i was running late, only a few minutes. I remember the Dr herself called me. (its usually a nurse unless its important) She said she was calling to make sure i was coming in and i told her i was only a couple minutes away. I got nervous after that call. I told my fiance' it must be something serious if the Dr called to make sure i came in.
I got labs drawn and only a couple minutes later the Dr. was in. She told me based on biopsy results. Her and her team were pretty sure i had Aplastic Anemia...She explained that my bone marrow was not producing enough blood cells. Hence the low blood count. At this point i actually felt relieved not fully understanding how serious this disease actually is. All i knew was. She didn't say Cancer.
She said that the pathologist wanted her to perform another biopsy. He didn't feel that there was enough of a sample and they wanted more just to confirm that this was what they thought it was. She asked if i felt up to it today. I said sure. The first one wasn't so bad. So i saw no problem with this. I also had a prenatal appointment later so I figured i could get this out the way now and carry on to check on my baby.

Now this biopsy hurt like hell!!!!! I was not prepared for this whatsoever!!! My lady Dr started the procedure and felt she wasn't strong enough to get through the bone. And she wanted to make sure she had a good sample this time. So she called in her colleague. Who actually is supposed to be more skilled in biopsies. He came in and i guess he felt where the lady Dr started was not a good spot and he made his own. Mind you. Her location already had the anesthesia put in. His did not!!! I spoke up. I'm like oh no! i can feel that. they went to numb me after the fact. OY. This man doctor. Strong as ever! drilled all into my back! Worse pain ever!. I was crying real tears. snot crying(tmi). I tapped out. I couldn't take it anymore. They assured me they got what they needed and that they were done. The Drs. told me how good a job i did (blah blah) and they nurse stayed behind to help me clean my face and to console me. I was a mess!. She left and my fiance' walked in. I was still crying. I couldn't believe how much this hurt compared to the first one. Then i cried more because here i was a blubbering mess and my fiance' was here with me. By my side. He literally just lost his mom and was still here with me. Being strong for me. I felt bad because i wanted to be there for him. I didn't want the focus to be on me. He was so selfless and understanding and strong. I will always love him for that.

After i got myself together and some feeling back into my legs after all that anesthesia. My fiance' got me a wheelchair and took me to a different part of the hospital for my prenatal appt. My hematologist wanted me to come back when i was done she wanted to discuss treatment and possibly another transfusion.

At my prenatal appt. Everything went as usual. I discussed with my Dr what had just happened. Hence the wheelchair. And IV catheter in my forearm. I told him about my SOB and tiredness and we agreed that alot of that was the low blood counts. He checked my lungs, and heart rate. And he also checked for the baby's heart beat. 160-ish. That made me happy. Despite everything. Baby appeared to be fine. The Dr helped me off the table and back into my wheelchair. As i sat there he pulled up his rolly chair and sat beside me. And began to talk. He told me my hematologist informed him of the Aplastic Anemia and how it would affect my pregnancy.. I couldn't really focus too much on what he was saying. All i heard is that he thought it would be a good idea to terminate the pregnancy. I couldn't fully understand how we went from one extreme to the next. He just listened for a heartbeat and told me everything seemed fine. Now u want me to terminate my pregnancy?. At This time i was about 13 weeks along and had a long way to go. The Dr. told me that if i chose to continue on with the pregnancy the only thing i could do as far as my Aplastic Anemia was continue to give me transfusions and that there would be a chance my body would develop antibodies and that could potentially make it hard for me to find a match should i need a bone marrow transplant. To this day I still don't know what any of that means.

I just couldn't believe i was faced with making this decision. The Dr and my fiance' went on to tell me that i could always try for another baby once i got my health back on track. But that's not what i wanted to hear. Now i was really upset.

I went back to my hematologist to finish up that appt and she told me since my counts were not improving that i would be admitted just for observation. And to allow GI doctors a chance to talk to me about the blood in my stool. She went on to ask me about my prenatal appt and told me that she agreed with what he had said about terminating my pregnancy. The rest of that visit with her was pretty much a blur. The whole day for that matter. I was drained. I was admitted to the oncology floor with this cute little old lady as my roommate. I just remember being in a lot of pain from my biopsy and super drained from everything i been through that day. I still had no idea what Aplastic Anemia was but i know its serious enough that they wanted to take my baby from me. I couldn't deal. But i had a decision to make. And i didn't like that.

Now i am going to fast forward to today and catch you up on the past month and a half.