IVIG Infusion

Yesterday was a long day!

It took almost three hours for my IVIG infusion. Then my doctor decided to give me two more bags of platelets. We arrived at the hospital at around 10 AM and we left at about 4:45 PM. I felt so tired and my head was woozy from the pre-medication they gave me. The IVIG is supposed to help my body keep the platelets longer. It seemed to work as my post platelet count after infusion went up to 67,000. Although it's a temporary fix, it's a bit of good news.

Dr. D came by to see me during the infusion. She's decided to move my transplant to January 2014 as there's a hold up in the donor search. I felt a bit sad that I'm not getting treatment the soonest, but I was also glad that I'll be spending Christmas at home with my family.

To whoever is reading this blog, please pray that my donor is found soon.

A Grateful Post

Today, a special gift from California arrived. The present neither came wrapped in glittery paper nor adorned with colorful ribbons. In fact, they came in simple, cold, translucent bags. Although simple and unadorned, these bags brought the best gift of all - LIFE.

This post is for my California platelet donor, whoever you are, you have my lasting gratitude for responding to my need of platelets. Platelet donations are tougher compared to donating blood, and I admire you for going through it. Thank you so much for your gift of life. 

A HEARTFELT THANK YOU TO ALL BLOOD AND BONE MARROW DONORS!

I've been waiting for matched platelets for almost a week now.  Since bleeding from my bone marrow biopsy procedure, my transplant team has been on the phone looking for matched platelets out-of-state. Surviving with just 1,000 platelets the past few days has been rough. I've been trapped at home and was not allowed to help in the kitchen especially in preparing and cooking food. My body is now covered in bruises and petechiae but I am hoping that some of these would clear up by tomorrow. The toughest of all is the psychological challenge of keeping my wits together in such a vulnerable and weak state.

For now, my transplant team has to keep finding me carefully matched platelets. My doctor also mentioned about putting me on Intravenous Immunoglobulin (IVIG) to keep/control my antibodies from attacking my own platelets and infused platelets.

It's another cold day in Maryland. Keep warm and always keep a grateful heart.

1,000 Platelets

Can a person walk around with just 1,000 platelets? Yes, it is possible. 

Since my body has rejected the last platelet transfusion I received on Friday, November 8, I have been functioning with just 1,000 platelets. Of course, I have to be very careful with everything I do; I'm not even allowed to drive. Apparently, my platelet match has to come all the way from California and won't arrive until Saturday, November 16.  For now, 1,000 platelets is all I have.

My situation makes me feel nervous, but deep within there's an assuring feeling that I'll be okay. I am thankful for my blood and platelet donors. I am also grateful to my future bone marrow donor.

To those who are able, please take the time to donate blood or platelets. You might never receive a personal "thank you" from the person getting them, but I assure you that the blood/platelet recipient knows how much you go through to donate blood - most especially platelets.  As a recipient of numerous transfusions now, my sincerest thank you to all blood and marrow donors. Without you, I won't be here.

BLOOD AND MARROW DONORS ROCK!!!

Writing with a grateful heart and blogging from the Infusion Room, Johns Hopkins.

It's a cold, cold day in Baltimore.

It's All About Blood

Yesterday was supposed to be a quick visit to the hospital. I'd do my usual labs in the morning, platelet or red blood cells transfusions and a bone marrow biopsy.  Everything went as planned except after the bone marrow biopsy.

The nurse discharged me after the biopsy and although I was still feeling woozy from the sedation, I happily hopped off my hospital bed to get going and get something to eat. Little did I know that as Kepi and I decided to get some hotdogs on the other side of road, I felt something damp on my back. I dismissed it and decided to cross the street anyway; I was really famished as I haven't had food since dinner the night before. As we got back to the hospital's lobby, the damp feeling on my back kept nagging me. I decided to take off my coat and have Kepi check my back.  It was blood.

Kepi and I rushed back to the procedure room and found the nurse who discharged me.  She immediately took me back to one of the rooms and started applying pressure on the biopsy site.  I was scared but thank God the bleeding stopped.  Who would have known that such occurrence came to be a blessing in disguise.

My transplant doctor arrived a few minutes later and informed me that my platelet transfusion did not bump up my count at all.  She told me that my body is "choosy" and that my donor has to be screened and matched thoroughly in order to find that my donor's platelets matches my system.  If that even makes sense; I was blown away. Anyway, I spent the night at the hospital for overnight observation. I didn't sleep that well, as the nurses kept checking on me every after four hours.

I am now home. I have to be extra careful as I am walking with just 1,000 platelets and I have a bit of bruising all over my body. I'd have to wait until Tuesday to get another platelet transfusion. For now, I have a pill that I can take in case I have a bleeding problem.

It is a wonderful feeling to know that I am still here. By the way, the stitches came off from my Hickman Port site; it is healing quite well.

Waiting Still...

The search for my fully matched unrelated donor is still ongoing.  Whatever awaits on the other side, I give it all to God.

Having bone marrow failure is a solitary road. Most of the time, people I know do not understand what I go through - psychologically, emotionally and physically. Now that my journey's turning point is at hand, I am lonelier than ever. The wait for finding my match feels like an eternity, and I get fearful as my doctor mentioned that the list is winding down.

Yesterday, I got my 14th transfusion.

Not a day goes by that I think of the possibility of death, leaving my love ones behind or not making it through the treatment. Not a day goes by that I think there's a reason for this suffering. Not a day goes by that I push myself to be positive and to remain hopeful. Not a day goes by that I hope for the happiness awaiting on the other side. Not a day goes by that I dream of being healthy again. These days, even the dream of dreaming to be happy is like an obstacle course.

The other side is the place I yearn for. The other side is the opposite of where I am today. The other side is the place of cure, health and finally - a smile.

I want to smile again.

New Normalcy

It has been a struggle to find some type of normalcy in my life these days.

I'm still struggling, but every day, I find something that helps ease my pain and discomfort. At first, I cried a lot. I still cry to let out the fear and stress, but now I've been finding more and more inspiration to fight back.

How do you find peace in times of turmoil?

• Prayers: Whenever fear comes knocking, I slam the door of prayer and faith. I learned to trust Him, and that He has good plans for me.
• Family & Friends: I talk to family and friends. I cry on my husband's shoulder. I write letters and send cards to feel that there's a connection, that I am not alone in this fight.  Facebook? Yes, I write and chat with my friends on FB a lot.
• Read: I ditched the serious books and started reading light-hearted and positive books. I even picked up children's books because they contain lessons on hope, happiness and kindness.
• Write: Whenever I feel inspired, I write on my journal. Writing has been a wonderful outlet for me, and that's one reason why I started to blog specifically for this journey.
• Do Something: Having a rare disease is not easy, so I imagined how scared others are too especially the newly diagnosed ones. I started a Facebook page dedicated on disseminating information on these rare diseases and the URGENT need for minority bone marrow donors. Please join my FB page here and help me share the information.
• A Good Cry: Once in a while, a good cry is all it takes to ease a burdened heart.
• Inspiration: I find inspiration in everything I do, see and feel. I post quotes all over our room so that I can read something encouraging whatever I'm doing.

Today, I share a quote from Maya Angelou. She's been a source of inspiration for me. Ms. Angelou is also dealing with COPD yet this woman is unwavering.

The ship of my life may or may not be sailing on calm and amiable seas. The challenging days of my existence may or may not be bright and promising. Stormy or sunny days, glorious or lonely nights, I maintain an attitude of gratitude. If I insist on being pessimistic, there is always tomorrow. Today I am blessed.

Uncharted Territory

I sat underneath a tree and the world kept moving without hesitation.

What they say is true, you can be the loneliest person even in one of the busiest cities in the world.

People I know are out there planning their lives, while I'm planning for the unknown. Does the word "future" still exist for me? On days I feel like shopping, I'd stop myself from buying clothes because I'd question if I'd still be alive long enough to wear them.

I've been crying a lot. I am also scared, but the scariest are still to come. I've decided to push through with the bone marrow transplant (BMT). My doctor said, "Soon, the blood and platelet transfusions will stop working. So it's either you do it or die." I appreciate my doctor's bluntness, as it puts things in perspective. 

The past few weeks have been spent consulting with two transplant centers - Baltimore and New York.  I've decided to have the treatment closer to home - Baltimore. The transplant consultations took a lot out of me. My stress and anxiety are through the roof hearing all the new terminology - chemotherapy, radiation, side effects, graft versus host disease (GVHD), isolation, loss of hair, fatigue etc. These will be the words that would accompany my journey.

Difficult as it may seem (and it is really difficult), I try to look for the silver lining:

• I have a chance to be cured
• I have 43 in the US, 143 international - donors in the preliminary search
• I have a loving husband that supports and uplifts me
• My family's support and prayers
• My friends' unceasing messages and prayers
• My employer's support and acceptance of my new situation
• I found a compassionate, understanding doctor
• God will see me through this journey
• And MORE!!!

Sometimes, I still feel this Aplastic Anemia/MDS thing is a dream, and how I wish it has never come to me.