Looking Back

Looking Back (01/28/2016)

Updated: 02/20/2016 due to publishing problems

Since I was little, I have always been weak and sickly. I was always admitted to the hospital as they thought I always had viral infections. I had bleeding, fever, and low platelet counts. I lived with my grandparents because my parents left me there. It was a complicated life. My mom visited me as often as she could but she was there when I was sick. She always brought my brother with her because he wasn't sickly like me. I actually don't remember much during my childhood. I just remember some bits and pieces.

I remember living with my mamang and papang (grandparents), my uncle Rey (mom's youngest sibling) and a hired househelp. I can't remember if I was naughty but I remember that I loved to read the collection of encyclopedia at home in Nueva Vizcaya together with one Almanac and the Atlas. My mom also gave me books when she came home from Manila, the sweet valley twins books, which I finish in one sitting.

I was a book lover and also loved writing poems and also wrote novelettes but my drafts back then were lost. I remember writing a certain novellete with the title "The vow of time" and "The Painting". My poems also since then weren't compiled and I lost them all. I became literary editor for our school's news org when I was in 4th yr HS.

I don'r remember much about what I did back then, just that I was often in the hospital or that I was always excused in school because of me being sickly and all.

I remember when I was in gradeschool, Grade 6 I think, I started to stop going to school often in the afternoon. It was because when the sun shines, my skin becomes really dry, I become really weak and my face grows this temporary rashes that subside when I arrive home in the afternoon. I was lucky, I guess, that we are living in the modern times or maybe others would have suspected I was kind of a witch or something. LOL Anyway, kidding aside, I truly had a hard time.

I was running for honors when I was in elementary but when I got in highschool, it was more difficult for me to cope up. I even tried being rebellious in the positive way. I wasn't supposed to join school organizations but I did and I participated as I could back then. If not, maybe I wouldn't have had additional memories.

I had my first transfusion when I was 15 yrs old, because of very heavy mestrual flow together with bleeding. They had me hooked up and gave me 10 bags of red blood cells and apheresis which is equal to 7 bags of platelets. I was in a provincial hospital and they panicked because the doctor in Manila said I shouldn't have been given transfusion because my body will rely on it and it did because for 12 yrs. I depended on multiple blood transfusions. My mom always had to look for blood donors and even if it was raining or there was storm, she rushed out to find what I needed. My younger brother also helped if he was  needed. My mom's friends and family always came to help when we lacked financially and when she needed someone to support her emotionally. She never gave up on me even how difficult it was. She had been through so much but she never left me. She was working and a housewife at the same time then she also had to be absent when I needed to be hospitalized again.

The doctors back then in Dr. Fe Del Mundo Hospital in Banawe St., Quezon City told us about ATG and bone marrow transplant but told us we could still see if the meds they gave me worked but no one even I treated this illness (Aplastic Anemia) as fatal as it really is. I believed it will all just go away one day so I didn't take it seriously. Most people even think it is just "Anemia" which it isn't because Aplatic Anemia is bone marrow failure; it is organ failure. I didn't even wear face mask or took my meds religiously because no one though it to be very serious. I, myself, didn't take it seriously. Even after 7 bone marrow biopsies/aspiration and many more laboratory tests, we all wanted to believe I was strong and I will be okay when time passes but I just didn't.

Back then I still have 60,000+ platelets  over 150,000-300,000 normal platelet count but through the years it's range decreased. 46,000-48,000 then 42,000 to 45,000 then 38,000-42,000 then 36,000-38,000 then you get the point and now I have platelets ranging below 10,000. Within this January 2016, I have 3,000-6,000. That's why we decided that i should now have ATG and we are fervently praying that it works when we would reach the target and earn an estimate of Php 1,200,000 to Php 2,000,000.00. I feel the weakness of my body. I wasn't as strong as I used to before. I love strolling but now, even just sitting in the mall makes me feel so exhausted. I feel frustrated and depressed at times but I offer it all in prayer to God and I know He will provide all that I need through the people around me who are willing to help financially, emotionally and spiritually.

In the picture is me and my best friend back when I was still studying in college. I want to go back and finish this course. 😞

With the help of those who are able to read my blog, I am asking from your good hearts to help us raise awareness about Aplastic Anemia and with more people to be able to understand and accept our condition, most will be able to reach thier simple dreams. I was a pharmacy student back then and I loved the course, it just broke my heart when I couldn't go to school to continue my studies anymore. I cried a lot back then. I still want to graduate college and fulfill my dreams. Others like me also want to fulffil their dreams.

I am asking from your good hearts to help me replace the blood I used in the past so the hospital may also give me another sets pf bags pf blood when i need it again once I go back to the Philippines.For blood donors, contact me in facebook or for experienced donors, just go to Sto. Thomas University Hospital blood bank in Manila and register your blood donation under my name, the same as above, so it will be counted. Please note my name when going to donate.

Thank you for reading and sharing to others my new post. Thank you for the donations and prayers. I will update more soon. God bless!

01/28/2016

January Needs

This January, i've been back and forth the hospital.

I have been feeling hopeless. I feel my body feeling weaker and I am filled with fear. It's truly hard to fight feeling pain when the body is so weak... So weak that My body just voluntary shivers and I am left to tears praying that the pain will just stop. It's hard to offer it to God but I offer these pains together with Jesus's sufferings as the pain I feel at moments last. It's all I can do but then, how can I tell my parents about my fears? That I don't want to have ATG anymore because I feel I can't make it. That I feel that when we are able to pay for ATG and I'm in the middle of the treatment, my body will just give up. But I can't tell them that. I can't disappoint them. I don't want to worry them more than how worried they already are. But with this entry now, they may end up reading this.

Though, I am feeling hopeless, I still hold on to my dreams with God's will for me and take this big step to be cured. I need emotional support and strength. 

Last January 3, I had my checkup. I went with my mom to the doctor ang got my blood drawn but my dad picked me up so i would be home sooner since I wasn't feeling well. My mom was left in the hospital to wait for the result. When my parents got home, they told me the result; platelet count of 5,000 over the normal of 150,000-300,000 and hemoglobin of 4.8 over the normal count of 12-15 for women.

The next day, they took me to the ER and was admitted, given 2 bags of platelet and 2 packs Red bllod cells after the anti-allergy drug was injected via IV. I was discharged January 5.

January 11, I had my unexpected monthly period but it came in a heavy flow (vaginal bleeding). The next day I had very bad cramps (and it added to my stress) and I was using 4-5 overnight pads. The next day, I felt better but I noticed blood clots and I felt so weak again. January 14, I was rushed to the hospital emergency room again. My CBC (complete blood count) results were as follows:

Platelet: 3,000

Hemoglobin: 6.6

White bleed cells (WBC): 3.4

SGPT: 74 (out of normal 55)

Note that SGPT is something released into blood when the liver or heart is damaged. The blood SGPT levels are thus elevated with liver damage or something is wrong with the heart like heart attack. Some medications can also raise SGPT levels like my meds. This is also called alanine aminotransferase (ALT).

With those results, they admitted me again to be given 4 bags of platelets and 2 packs of red blood cells and hydrocortisone to avoid reacting to the BT (blood transfusion). That night, friends came to visit and offered prayers to God for my healing. I was discharged the next day and was given an appointment for my next checkup.

When I got home, the result of my SGPT bothered and worried me (stressing me out and scaring me) because someone from a facebook group about Aplastic anemia informed me that I was underdosed that's why the meds were not working on me. I had to decide whether to continue the meds with my SGPT result like that. It took me days before I decided to stop the meds but that day I decided to give up my meds since underdosage means no treatment at all, I went for the checkup.

This time when we went for my checkup, the doctor talked to us calmly and gave us more details and raised the dosage of my meds. He was in a good mood, I think. He doesn't usually talk to us like that. He always just tells us he can't do anything for me and all he can do is give me prescription to be able to get medicine from the pharmacy. But that day, it was different. God truly moves in different ways. So now, the meds I am taking are:

Cyclosporine: 100mg 2x a day

Prednisolon: 5mg a day

Folic acid: 5mg a day

Revolade: 75mg once a day

I thought I will just be doing okay. But then yesterday, I was rushed to the hospital ER again. I had stomachache and I was dizzy but then when I rested my head to sleep, my head ached and I vomited a lot. They gave me fluids and pain reliever and pantomax for the stomach. After that, I was sent home. Now, I am resting.

I just thought I should write this update about my health now and how I feel about ATG and what I'm also emotionally going through. Please include me in your prayers and help me in my upcoming fundraising, too, for a final fight for a longer life through ATG treatment. The doctor in the Philippines told we may need a total of Php1,500,000.00 which is more or less $27,000.00 and that is only a rough estimate. We may need help raising this sum, but with God's help through the good hearts of those who want to help, we will be able to raise this.

For blood donors, too, in the Philippines, please call UST blood bank for information or if you are willing to donate with experience, please mention my name just above when you go so it will be counted. I also still need a lot of blood donors. Do send me a message @ thevsaafighter@gmail.com or karen_608@yahoo.com.

Thanks and God bless!

Written - 01/27/2016

Gifts and Blessings

Yesterday, I was still having the headache a bit but it was tolerable, and I didn't want to feel the pain again so I woke up early and stayed in the living room and kitchen because when I rested too much, the pain got worse. Walking every now and then and just sitting was what I did. In the afternoon, we went to Tahlia street and window shopped just so I won't sleep at home and won't get the headache again. Our last stop was in Jeddah mall and we ate my favorite yemeni food. I forgot to take a picture of it and I don't know its name. All I know is that it's tuna and there was arabic bread. I also had adani tea. We ate until full and we stayed there until 8:00, I think but I was really tired.

When we arrived here in our flat, it was when I felt my body so tired. I wasn't dizzy but I felt like I was beaten. I couldn't sleep, too and only got to sleep by 1:00 AM. I had slight fever last night but didn't tell anyone. Anyway, today i woke up at 11 AM and just rested while my dad was at work, my mom did the groceries and my sister was in her violin practice.

We also had a visitor and I received these gifts. I really loved it! Thank you for the gifts! 😊😍

 

Also daddy came home with pizza and mommy cooked veggies with shrimp and bagoong! Yummy snack and dinner! 😍😄

Thank you God for the gifts and blessings! And not only that, a friend of daddy arrived who is a lay minister and told me he would be visiting every night or as often as he could so I could receive communion and also pray novena to the Holy Spirit. I was a bit hesitant before he came but I know this is a gift from God so I mustn't hesitate or reject it.

Prayers are my source of hope. Early in the morning, I thank God for giving me another day to live and another chance at life then I offer my feelings and emotions to God and offer all of what will be happening throughout the whole day to Him and then ask Him to fill me with His love and mercy. I pray the apostle's creed, the Lord's prayer, say the Hail Mary then pray 27 Glory Be's as I am already 27 years old. Every Glory Be is for every year that I have lived on earth. I followed the way of prayer of St. Therese of Lisieux, my favorite saint. I end the prayer with the Fatima prayer. At night, I also pray before going to sleep. The Prayer for the Jubilee Year of Mercy and the Divine mercy chaplet with intentions. I think we should take a little of our time to pray everyday. Nowadays, it is hard to have time to pray but when I think of it, being alive and healthy is the more reason we should pray because we can. It doesn't have to be a very long prayer but having a conversation with God every now and then for a minute within a day will do.

By the way, I have thought a new product that I will be using to start raising funds for my ATG. I'm in the process of developing my skills for it through youtube so please stay tuned. I won't be telling you what it is for now but I think it is fun and I have just enough energy to do it. I also think it's cute and that you will love it.

Thanks for visiting my blog. Please support me in raising my funds to be able to undergo treatment and raising awareness about Aplastic anemia or bone marrow failure. God bless!

A Little about Aplastic Anemia

Hi! It's me Karen.

Yesterday wasn't a good day for me. I had this dizziness early in the morning and the tormenting part is when I rest my head in bed, my head aches and then I vomit. I took paracetamol for the pain twice with 4 hours in between and took a nap while sitting up and with my head bowing down and not resting. After that, I decided to go out with my parents for fresh air and a little exercise and it helped me a bit to feel better.

I am not sure if it is because of my meds, my eyes or indigestion. But I'm glad that's over.

We also went to my dad's insurance company if they can cover ATG as treatment when I go back to the Philippines, if we can raise a starting payment for it through fundraising. I've thought of ideas to help raise funds and be an advocate for the awareness of our rare and most often misunderstood disease.

Right now, I've copied these information from the reference also included below for you to have a bit more understanding about my illness, if you haven't read about it yet.

Please wait for more updates on this blog. I am also looking forward for your support in our fundraising. God bless!

What is Aplastic Anemia?

Aplastic Anemia is a rare disease (affecting only 2 in a million people) in which the bone marrow and the hematopoietic stem cells that reside there are damaged. These causes the deficiency of red blood cells, platelets and white blood cell counts.

It is most prevalent in people in their teens and twenties, but is also common among the elderly. It can be caused by exposure to chemicals, drugs, radiation, infection, immune disease, and heredity. However in about half the cases, the cause is unknown.

The definitive diagnosis is by bone marrow biopsy; normal bone marrow has 30-70% blood stem cells, but in aplastic anemia, these cells are mostly gone and replaced by fat.

First line treatment for aplastic anemia consists of immunosuppressive drugs, typically either anti-lymphocyte globulin or anti-thymocyte globulin, combined with corticosteroids and cyclosporine. Hematopoietic stem cell transplantation is also used, especially for patients under 30 years of age with related, matched marrow donor.

What are the symptoms?

• -       Anemia with malaise, pallor and associated symptoms such as palpitations
• -       Thrombocytopenia (low platelet counts), leading to increased risk of hemorrhage, bruising and petechiae
• -       Leukopenia (low white blood cell count), leading to increased risk of infection
• -       Reticulocytopenia (low counts of reticulocytes, that is, immature red blood cells)

Treatment:

• -       Daily medicine that suppresses the immune system
• -       Bone Marrow Transplant
• -       ATG with cyclosporine
• -       Chemotherapy with cyclophosphamide
• -       Stem Cell Therapy

Ref: https://en.wikipedia.org/wiki/Aplastic_anemia

Some misconceptions about Aplastic Anemia (according to my experience):

• -       AA is nutritional anemia. It is iron-deficiency and can be treated by just eating food with high iron levels.
• -       It is treatable with continuous blood transfusion.

*It helps in maintaining the blood count in a considerable level to be able to continue life.

• -       AA is cancer.

* It can be treated with some of the same procedures (chemotherapy drugs and bone marrow transplantation) that some cancers are. As a result of its similar protocol, however, aplastic anemia is most often treated in a cancer center.

• -       AA patients become normal after every blood transfusion.

The misconceptions above are opossite of what is truly happening in our situaton. Please message me if you have any questions. Thanks!

Photo is not mine. Got it from: credit: http://rlv.zcache.com/aplastic_anemia_awareness_1_poster-r42c9c520629448b18542fa32cc326a35_w6a_8byvr_512.jpg

The Vampire Syndrome

We made it a personal joke and called it the vampire syndrome. 

There was a time I really fell in love with the twilight saga, which is a vampire series, and read all the books and really looked forward to the realease of each book and movie. I have completed all of it and I even wrote a fan fic about the main character's daughter Renesmee. It was one of the reasons why my family called me a vampire and not only because of that but because of what I have called Aplastic Anemia. I need another man's blood to live.

 

Aplastic Anemia is not an ordinary nutritional anemia. It is bone marrow failure.

Bone marrow is the organ of the body producing the blood components that our body needs but for me, it is not working. Bone marrow failure is organ failure and it is usually misunderstood to be just lack of nutrition or of the sorts.

This blog is about me and my family's strugfle to keep me alive despite of lack of red blood cells and platelets.

As of today, Just after my transfusion yesterday, I have platelet count of 6,000 out of the normal of 150,000-400,000 and hemoglobin of 9.4 out of 12-15 normal hemoglobin count. Through this blog, I want to ask for help from people because I am looking forward to having ATG treatment to have another chance at life.

Blood transfusion isn't treatment for me but it's not working well anymore since even after it, I still have very low counts and it expires for 3wks to a month. It extends my life for a bit but then won't make my counts rise and also, my blood count range is becoming lower and lower, I am feeling hopeless but I still have faith that God knows what is happening and He has plans.

I will be asking for help in raising funds for the ATG treatment. Paying for my blood transfusion and maintenance medicine is too much already so how will I be able to raise for ATG, too? I am hoping for people's good heart from all over the world to help me raise the money I need for it to also have the chance at a normal and at least an extended time to live. I am scared, please help me.

The pictures posted here are my lab results before transfusion. Eith hemoglobin of 4.8 and platelet count of 5,000.