Aplastic anemia, Bone Marrow transplant 1 year update

9:57 AM Dressy_Daisy 1 Comments

I am writing today to give praise to our heavenly Father, King of Kings.
Life has been so busy and I've been too busy to keep up with my blog, and to that I can thank God. Why you ask? Because life is back to being as normal as it used to be. Daily tasks keep me busy like a normal person. Oh boy does it feel good. This can account on why this post is a little late..
3 weeks ago I hit my 1 year anniversary since my bone marrow transplant. It was a year ago that I was in the hospital, looking out the window at the 'normal' healthy people going on about with their lives, some with not a care in the world. I was battling a battle inside my head mentally, spiritually with the good and the evil, and physically. Every day was hard on it's own but God was with me the whole time like he promised. His care for me was like that of a mother with a newborn. He rocked me to sleep every night and put his angels in my room to fight off anything that can harm me. Not enough words can describe the love I continue to feel from him. I love him more and more every day as I think about how blessed I was and how he spared my life and literally kept me from feeling the things everyone feels with this deadly sickness. And he is putting everything back into place. Like he said he would.
So as for updates on my life after aplastic anemia, my counts have been at a solid normal for a while now. My iron is still dangerously high and it goes up and down but is not going down as fast as I would like it to. The doctors want to do a 1 year evaluation which includes a bone density test as well as a bone marrow biopsy. This will be my 5th and I am scared to death of this procedure as you all know because it is extremely painful. My insurance changed and so I will be transferring to a new oncology specialist and I am kinda worried about that because I do not know what to expect.
Also after 1 year they do a test that checks if the ovaries are still functioning. They did my test and I am not menopausal so thank Jesus! They said everything looks good so far from what it is showing. Yes I only had 5 days of chemo but it was pretty intense.
I am pretty sure a lot of people have been wodering about my hair..
I have not been comfortable enough to talk about it yet, but I feel like I am ready now.
Yes, I lost my hair 10 days after the transplant. My hair was so long, it was well past half way down my back. I cried when I started seeing pieces of hair on my pillow, prayed when was able to easily pull out pieces without any effort. After being in denial and having my hair in a bun for a few days I finally decided it was time to wash it. As I took out the head band, a quarter of my hair came out with it. The rest I was just able to basically just brush out. I bawled in shock as my husband held me close and told me it was going to be okay. I am still surprised how strong he was as he didn't cry with me, but instead got the nerve to shave the rest of my head. After my shower, I never cried about my hair again. He went to the store for me and got me head scarves and when I put them on he told me that I looked so much cuter than I did with the dirty old bun. I was 15 pounds over my normal weight at that time too so you can only imagine how self conscious I was feeling. But no, he still loved me, was attracted to me, and looked at me the same way he did the day we said our vows.
What I am thankful for also is that I got to keep my eye lashes and eye brows and they both got a lot thicker, and with a wig and cap, you couldn't even tell that I was sick. I didn't want people to know because I don't like sympathy and don't want pity. I am who I am, what happened, happened. I am okay with it. But a lot of people did know because they knew I was gonna take chemotherapy. And about the hair, the only thing that mattered after it fell out was if it was going to grow back. And as soon as I felt it, I was so happy. One thing is to lose it, it's another when it never grows back which can happen. So thank the Lord. With every month, my hair grew and I felt better about my self. I recently was able to get a trim and my husband wouldn't even let me touch the wig because he said I was too beautiful for it. It took a year for me to grow it out to where I was comfortable with it, but that is because my hair grows very slowly. And it's just hair. I know there are much greater things people have to live without forever, like a limb or ability to walk, see or hear. Be thankful if you have all of those. Be thankful if nothing about your health is bothering you. Be thankful to be alive. Be thankful if you are a christian and God has found you and set you apart from the world. Be thankful for everything that you have and everyone.
I will keep you all posted on everything new or any updates. Thank you for reading. Blessings.
xoxo

9 Months Out + Brothers testimony

1:38 PM Dressy_Daisy 0 Comments

Hello loved ones. Yes it has already been 9 months since transplant and it is crazy to think about how fast time passes. With every day and lab test, more good news and progress is noted. I had my labs done yesterday and my red blood is at 12.7 and platelets are at 150. My iron is still very high and went up, probably because my body is producing it now too, and it is at 1678, SUCKS :/
But I am still taking meds for that, I will try to be better about taking them. My doctor says I am doing great and my labs have been changed from once a week to once a month!! Praise God. After being poked every other day, this is such a blessing to my poor arms. This gives me more free time also and makes me feel more normal. I was listening to my prophecies yesterday and wow, God came through. So much was opened to me, and I realized how much God was with me. He told me he would be with me, he would do great miracles, he would help me and I would testify. I can see this stuff folding out in front of my eyes. A very small amount of people have very few or even no side effects from chemo and I was one of them. By Gods grace, that wasn't in my cup to drink through this already hard trial. I even felt okay since the day I got sick. Yes when I was severely anemic I did not feel great and had headaches and petechiae but I have been anemic for the last year and a half and I felt a lot more wonderful than the average semi-anemic person. I lived life, I went on. A person is the sickest when they let themselves feel that way. During all my labs and infusions I did not feel the poke or needle half the time. All in all, God is good, all the time. One of the things God told me almost 3 years ago, before I got sick, was that he was gonna use me and I was gonna testify. And his words are life and are true. Aside my testimony, here's another one...
I am from a big family with 5 brothers and 1 sister. I have loving parents that have raised us up to be who we are today. However, what they teach us does not mean that the world can't change us. No family is perfect and we all have problems. My little brother Alex was my donor, hes 23, and he had problems recently involving drug use. I am not embarrassed to say that because it is very common, and it's the devil that manipulates and ruins people, not the person themselves. We live in a sinful world and we need to be wise about our friends, activities, and free time. He was struggling with this problem on and off for some time and it put a strain on his relationship with God. When I told him he's a match to be my donor, there was no hesitation from him. Well, I had many people who said they would do it for me if they could. By the time the transplant came around and he had donated to me, he was given pain killers. I can't say this was the issue for him, but like stating before, there was a strain. He wasn't serious about anything and eventually wasn't working anymore. A few weeks after transplant my mom told him I had a minor infection and he felt so guilty. He thought, why is she the sick one? She's done nothing and I am the bad one here... It made him think.. A couple days later he had set up arrangements with God Will Provide Ministries Church in Sacramento California. He wanted to get away and have a fresh start. He needed to rekindle that fire that used to burn in his heart for the Lord. He entered their 6 month program and graduated in February. This last weekend, my mom, sister and sister in law, brother and cousin flew down to support him. Wanna know why? He got baptized! He turned his life around and surrendered it all at the foot of the cross. It was a very special and touching day. We are all very proud of him. And to top it off, he's gonna continue to serve and may God bless him. He is on a missionary trip in Panama City right now. He will be there for 6 months! At some point he will be there on his own running the church. I am so happy that God is using him. He's testifying about me, I'm testifying about him, it's astonishing. He's the brother I would beat up growing up, and he is the brother that saved my life. Please keep him in your prayers, as this will not be an easy thing for him. So as you can see, God is doing his work. But this is only the beginning, Keep posted.
Blessings
xoxo

4-26-2016

10:46 AM Dressy_Daisy 0 Comments

Today is a good day to remember. My blood count is finally in the normal! I am soooo happy and so thankful to God for keeping his promise and healing me and for giving me life. I got my second chance and it's a great reason to testify and spread the love. My red blood is finally at 12.3 and the average is 12-16. It's been almost 9 months since transplant. Yes, it might be a little longer than usual but I  am very grateful. My hemoglobin was always around 7 or less since November 2014. So I was anemic and had the life of a weak person for a while even though somehow God gave me the strength to keep up with my daily tasks. It feels so normal and right when I can run or do an activity without the pain of my heart overworking from lack of blood. It's like a breath of fresh air. It's something we take for granted- even I did before I knew how much it is worth. My platelets are at a steady 155 (normal is 140-375) and it's been over 2 months since my last blood transfusion. It's a relief knowing I don't have to have huge needles in my arm every week and that my arms can heal. I have so much to be thankful for. Thank God for doctors, medicine, education, healing, technology, prayer, and all the things that were used during the process. I still can't believe how fast time is flying by and how my body is slowly going back to normal. Thank God!
Also the biggest testimony, and more soon to come, I am flying down to Cali in a few days to visit my brother Alex. He is my younger brother that was my donor. After my transplant he moved there and he is getting baptized this weekend so some of my family and I are flying down to support him. Stay tuned to my next blog and I will give you an amazing story about what God has done to his life. Him being my donor was God's master plan to bring him to repentance and salvation. I cannot even describe how amazing our God is and I am so overwhelmed with his love and mercy.
Anyways, I will be posting soon.
Love you all, thank you for your prayers.

8 Months Out

11:04 AM Dressy_Daisy 0 Comments

Hello friends and dear readers. It's been a while since I have posted anything about my recovery, but I can't help slow down the life that is flying by before my eyes. It's been 8 months since I have had the bone marrow transplant. That's 240 days! It doesn't even feel like it even though it seems like ages ago. Since my last update, a lot has changed. I went back to work in February and have been working part time and it made me feel normal again. Having an agenda, making plans. My days are longer, more productive, less lazy. I work as a pharmacy technician and have been doing this for over 6 years now. It's a very easy job for me since I sit at a computer and know how to do my job well. So in other words, stress-free. Usually. That is what is important for recovery as well as sleep. I was on a pill so that I wouldn't bleed since I got sick. I was taking it because my platelets were constantly low and they didn't want me to have my period and lose extra blood (I'm anemic, I need all the blood I can get lol). And so I didn't have a normal period for about a year and a half. After transplant, my platelets were the first to go up. Once they were over 130k they told me I can stop the medication. I still didn't get my period for about a month and a half and I was already kind of worried. Doctors said after chemo there is a chance of not having your period come back. Well guess what, it started. Better late then never, but it felt sooooo good because hey, it was another thing that made me feel normal. Some people complain about their periods, but take it away from them unwillingly and they will never complain again. You don't know what you have till it is gone... It doesn't mean I am fertile and gonna have children for sure, but we are praying for God's will. We believe that with him, all things are possible. Anyways, I was taking it easy with exercise because my heart would hurt any time I did any hard physical activity like jogging or a workout. However, at the beginning of march I noticed my blood finally started going up on it's own!! The last transfusion that I received was on 2/20/2016. that's 6 weeks ago. That's the longest it's ever been since I got diagnosed! I am so excited. My blood the first week was 6.5, the next was 7.5, then 8.3. Last Monday when they check, it was 9.7! The average is 12-16 so it is almost there. As soon as I saw it started going up, I got myself a gym membership and I have been able to work out like a normal person (I still take it easy). But I am capable, that's the point. I am also trying to lose some weight that I gained over the months and trying to get some muscles back. The steroids, chemo, water overloading, stress, and pills did a toll on me.  And it's such a relief that things are going back to the way they should. The way we all expect our lives to be before something happens and all of the sudden your sick and have to make life changing decisions. My platelets are already at 200, and my white cells started to go up as well. My iron should be 11-307 (average) and it was 1485 because of all of the transfusions. I have been on a medication exjade. It wasn't helping all that much. I started drinking a goat whey smoothie every morning with Thorne Basic Detox Nutrients and within weeks my iron has dropped down to 1072, Praise God!!  That's my biggest issue right now. Even mild iron overload can increase the risk of liver disease, cirrhosis, cancer, heart failure and heart attack, diabetes, osteoporosis, premature death. It can accelerate Alzheimer, early-onset Parkinson, huntingtons, epilepsy and multiple sclerosis. Obviously all of these are scary and are like nails on a chalk board when you hear them. That's why I am praying and hoping the iron will drop fast. All my other results look really good. They are all in the normal range, so that's awesome. My brothers cell have taken over mostly and are doing what they need to. As for whats new with me, we are in the process of buying the house we are renting right now. It fell in our lap and I just see it as God's blessing. We don't have to move anywhere and now we will be paying rent back into our own pocket. So that's exciting. Also my husband sold my crossfire and got me a new car, so that has also been the highlight of my month. All in all, this is just worldly materials, in the end they don't matter. Objects don't last, neither does this life. Cherish your life, your loved ones, your health. Be thankful every day. Be blessed :)
xoxo