Wednesday, November 20, 2013

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.

Saturday, November 16, 2013

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. 


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.

Tuesday, November 12, 2013

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.


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

It's a cold, cold day in Baltimore.

Saturday, November 9, 2013

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.