Rest and sort of relaxation!

Ok so after that weekend of crazy, I decided I need to rest!!!! LOL I haven't had any more things happen thank goodness!!! I went to the doctor on Monday and because so many different things could cause my seizures to happen he took me off of everything but Tylenol. Well little did I know even though I was only on the steroid for two weeks, I still had to deal with withdrawal symptoms!! Holy Crap! I am soooooo shaky and in sooooo much pain! It is like my knees forgot how not to hurt!! Well for my rest we went Kelton UT and then on to Boise to take my dad to the airport!! I know doesn't sound like rest but actually it was really nice to get away!! Plus it was good timing for Gary he has a lot going on for baseball and need a break for watching my every move!!! That might be the hardest thing for me to understand! He feels the need to watch me and make sure I am ok! I don't feel like an handicapped person but everyone treats me with white gloves!! I know that it was scary to experience me having seizures, but it has been a week lets try to move on!!! LOL if only it was that easy!!! Oh well I love my family and my husband and understand it hard to not make sure I am ok! Thank you again to everyone who has helped me and continues to help me!!! Thank you to everyone who has brought us dinner and everyone who has driven me somewhere!! I love you all Thank you!

The next weekend from hell!!

Well nothing went as planned this weekend! I helped at the spring fair Thursday afternoon for about four hours!! Man it took it out of me! It is hard for me to understand my new limits!! Then after that I wanted to go shopping for the the weekend events! I also wanted to get my eyebrows waxed! Apparently I did way tooo much!! I was prettty tired so I took my night time regiment of pills and went to bed! I was up about every hour needing to go to the bathroom, man I was sick of peeing! At about three am I woke to pee and decided I should take more sleeping help pills! I grabbed a bowl of cereal and then noticed my eyes wigged out and I couldn't see to get a spoon so Gary helped me get a spoon and get back in bed! Shortly after that I apparently had a seizure. Gary heard a thud and came in the room and found me on the floor. In the middle of it! I came out of disoriented but ok! He was amazing helped me change and get back to the chair so I could sleep! Well I was a couple of more times to pee and poor Gary every time I moved he about lost it! Then at seven am I apparently had another seizure so Gary recognized it and called 911 before I knew it there was a ton of people at my house my mom and brother included and I was on the way to the hospital! When we got to the hospital I felt ok so they were just watching me and checking my levels! I had a really high bilirubin levels and so I was really yellow! At about 10 am with everyone in the room I had yet another seizure! I bite my tongue a lot and bit a stick in half! Gary and mom kinda freaked and had to leave the room! Erika and my mother in law Darlene stayed with me and helped me thank goodness!  They admitted me to the hospital and I stayed until this afternoon! Nothing else happened in that time thank goodness! I am extremely tired and need to learn how to rest! I find out tomorrow what the doctors plan is for medication and the next step! I am worried about what they will say but hopefully we can figure out that I was just tooo tired and dehydrated and I can start back on my pills and get back on the road to recovery!!!  

A better update for the day!

I went to the doctor today and my platelet counts are 14 and everything else is golding for now!!! Sad news is my Aunt Linda passed away this morning! Come hell or high water I will be at the funeral saturday regardless of my body so it better cooperate!!!! I loved you Aunt Linda more than you know! I am sorry I did take more advantage of time you had with our family!! You were amazing and I will never forget the song you made up for my son Dalyn it was my favorite tune ever!!! I am glad you have been released from your pain and suffering! Thank you for sharing your sweet spirit with us! You are a very important part of the Byington family! we all love you!

The weekend from Hell!!!!

So the rash that started on Thursday got way worse all over my whole body!!! I had some achenes that started in my hands and feet and the to every joint in body!!! My knees, my ankles and shoulders and everywhere in between! The doctor just says it is part of the process and sorry here is some stronger pain meds!!! On Friday afternoon I was not able to stand by myself or walk by myself. Saturday morning things went from bad to worse I kept spiking a fever up and down all day until afternoon it went up and didn't come back down. So we called the docotrs emergency line luckily my doctor was on call! he told my get to the hospital er right now!!! The only way my husband and I could figure how to get me to the hospital because I couldn't move my self was to have the ambulance take me! At this point I was super thankful my two older kids went over to the casper kids to play!!! We called Kristi and she ran over and got the baby!!! At the hospital my fever went higher and higher!!!! It finally spiked at 103.2. The hospital couldn't give me much to cool me off because I can't have motrin products and I had already taken my own tylenol!! They gave me morphine for the pain but yet I still could not move on my own!!! The gave me dexamethasone and a norco 10 before leaving the hospital! I have no infection anywhere in body trust me they checked everywhere! Luckily when we went to leave there was a huge buff er nurse who helped me into my moms car and gary was able to help me out!! When I got home I could walk slowly on my own for short periods of time. Sunday came and same thing couldn't get up by myself but as soon as I was up I could move around my own!! Now Monday morning I am up all by self showered and almost ready to go to the doctor!!! But they also gave me percocet 10 for pain and they give me strange dreams or hallucinations is if I don't need them I won't be taking them!!! I hope everyone elses weekend was better! I just keep praying that this was a one time occurance. Also we need prayers for My aunt Linda that the lord lifts her suffering soon!!! She is ready to go home!! Thanks to all my friends and family!!! All the prayers and well wishes are really helping!

Long time since last post!

Hey guys sorry it has taken me so long to post an update!!! Life is kinda crazy between three kids and husband and many doctor visits it is hard to find time or energy to get things done!! Thing have been ok! I pretty have been running the gamete of side effects. I have had bathroom issues, some throwing up and hives. I have also had fevers and cold chills almost every night. I always feel hot and sweaty. It doesn't seem to matter how cold it is outside I still get hot. I am thankful it is not summer right now or I would be dying of heat! Plus I just feel like I can't move at all. I said today that I had a case of the slows. I feel like I am moving in slow motion all the time! Today started ok beside not wanting to get out of bed!!! I took a shower and then started to notice a horrible rash starting on my legs and spreading fast! I took some benadryl and tylenol and that did nothing the rash got worse. So I left work and came home took and adavan and slept! When I got up from my nap my hands and fingers were aching so bad. I think they have gotten worse as the night has gone on! Good thing I have a doctor appointment to tomorrow so hopefully we figure out what is going on!! Other than that I am trying to keep it all together but boy I am tired of being in bed!!!! Hopefully Saturday I will be able to go with my mom to Utah I need a break from my bed lol!!!!!

First day of no treatments!!!

Well I didn't have any treatment today thank goodness!!! I went to the doctor to have them check my numbers! Platelets are 17 and everything else is low but ok! The PA would like my hemoglobin level to be a little higher so we will re check on Monday! It is strange to go from being a person who takes occasional tylenol to having to take so many drugs in one day! We are heading to Idaho Falls and I had to make sure I had all my pills packed just in case I have a sudden reaction. I have to be prepared for anything and I also need to try and remember to not over do it! That will be a struggle for me! The PA says any other person with my blood counts would be in bed, so I amaze her that I get so much done in the day! I guess it is a blessing to be as healthy as I am. I am thankful I can still function at a somewhat normal level!!!

Day 4 the final day of treatment!!

I felt really great in the morning when I went in for treatment. When I got to the treatment center I had to wait a short while for the platelets to get there! As soon as they arrived the day started. I received the platelets then the AGT drug therapy. Things went good all day. The hives were minimal and I had very little pain. After treatment things got really busy at home. I was able to fit in a small nap and some rest time while Gary went out and bought a new truck! I am excited for him he has waited a while for this day to come!! Today I just have to go in and check my blood counts and check in with the doctors. It should be a pretty short day and hopefully after Gary gets off work we can go on a drive in the truck to check it out!! Now it is a waiting game to see if the medicine worked enough to keep me away from blood transfusions! The first step would be a platelet count of 50! It is a small leap and I hope it happens quick!!! I am trying to be positive!!! Thanks to everyone for the prayers!!!! Love you all! Also a big thank you to the wonderful nurses and PA that looked over the past four days they were wonderful and extremely nice!

Day 3

Well, the morning of day three is extremely rough. It was the hardest time I had so far!! I had the chills so bad I couldn't stop shaking and I had a bad case of hives!! I took some Benadryl when I got out of bed to help with the hives. I forgot to eat and just jumped in the shower. Bad Idea!!! I had to make my shower quick and just as soon I as I got out of the shower things went from bad to worse. I threw up and then had to get my self together and get to the doctor. Luckily by the time I got to my treatment all of my problems had subsided. I received my third treatment and things went great!! The one downside for the day was that my platelet count was again really low so I need to have another infusion of platelets. Last night was by far the best night so far! I had very little pain no hives and I was able to sleep really well!!! Just one treatment left then we will work on get my counts up! I am positive that the drugs well help and my problems will subside at least for a while!! Again thank you to all those that have helped me!

Day 2 of AGT

Ok sorry it has taken me so long to post. Day 2 went really well and I felt fine afterwards. I think I may have done too much after treatment because I went down hill pretty quickly after I got home. I experienced may different side effects. I had a high fever and chills most of the night. The pain in hips was not as bad as the day before and I was able to control it with medication. I feel like I am taking more over the counter medication to counter act side effects. I just hope by Friday morning that things have calmed down a bit! After the second day of treatment I am half way down hooray!! This morning was rough but know I am doing much better!!! I am trying to stay positive and that helps!!!
 

Day 1 of AGT treatment

Ok so day one happened yesterday! 1 day down three to go! Things went pretty good and I felt way better than expected. I did develop a case of hives but with the help of benadryl the hives quickly went away and did not return! My hips and legs hurt a lot last night but when I woke up the pain was gone! So I hope that the next three days of treatment go well and are over quickly! The treatment has been known to work fast but everyone is different and it could take more treatments and more blood transfusion before I get better! This is a fairly rare problem and and everyones bone marrow responds differently to the treatment! All in all things are going good and we are staying positive!!! Thank you to all my family and friends and the prayers and fasts on my behalf. Everybody has been great and very helpful!!

Background of my situation

          I wanted to start this blog to help the my friends family understand my illness and my treatments. So I will start with some background information. 
          We will go back and start with when I was diagnosed with Aplastic Anemia. When I was sixteen and in high school I went to the doctor for an unrelated problem. They decided to do a blood test to check for infection. My blood counts were so low that the doctors thought the machine was broken. So they tried again and my counts still came up low. So, they wanted to try one more time to make sure that it was me and not mechanical error. Well sure enough it was me!! So they sent my to the hospital and they did a test called a Bone Marrow Biopsy. To perform this test they have to go into the hip bone and aspirate some bone marrow to test and check for and abnormalities and other problems. just and FYI if anyone else has to go through that procedure just remember the doctors lie it does hurt way worse than the dentist!! They concluded that I did have aplastic anemia. Which basically means that my blood does not make enough blood cells as a normal person does. So things they worry about with this diagnosis is number one bleeding or excessive bruising. Also a big worry is infection and the possibilities of catch a secondary problem like a cold or flu or pneumonia. Up until just recently I haven't been at critical levels where they had to intervene and do something to fight it. I have always had a lack of energy which turns out to be a side effect of this problem. I was just thought that it was my normal to have low counts and it would all be ok. 
       So now to explain what is going now. About six moths ago I had an abnormal period where I bleed excessively. Well that was from two different problems. First was my blood problem, second was that I have a fibroid tumor in my uterus. At the point they did a blood transfusion to give me back what I had lost. At that point I did fine until about the last two months. I had some more excessive bleeding so I was put in the hospital and received another transfusion and some platelets. They kept monitoring my counts and they kept dropping so so after another platelet infusion and another blood and platelet infusion the doctors wanted to do another Bone marrow biopsy. Again the doctor lied it hurt  like crazy!! They found that yes I still had aplastic anemia. Luckily I didn't have any cancer cells or abnormalities. Thank goodness it hadn't gotten worse in the past fifteen years. At this point the doctors, my family and myself have decided to do a drug treatment called anti-thymocyte globulin and cyclosporin most of the time is shortened to AGT with cyclosporin.Basically how it works is it attacks my T-cells and creates an environment for new good cells to grow up in. I started the treatment on Monday and they do the treatment for four days. Most of the time the side effects are flu like symptoms, achy bones and joints and rashes. each day of my treatment I will update my blog and let everyone know what is going on!