Aplastic Anemia Journey- Val

I bet you are wondering why I consider my severe Aplastic Anemia a "gift". For those of you who aren't familiar with AA, Aplastic Anemia is a rare condition that occurs when your body stops producing enough new blood cells. We all have this thing called a bone marrow, it is located in our bones and is what our bodies use to produce new blood cells. Bone marrow is in charge of producing red blood cells (RBC), White blood cells (WBC) and platelets. Your RBC carry oxygen throughout your body,WBC fight infections, so if you have a low count of WBC you are more prone to getting infections. Last but not least platelets, platelets are in charge of clotting your blood when you are bleeding.  Isn't the body interesting? I think so. Now that you are familiar with the function of each blood cell in your body, imagine going to the doctor and finding out all of your blood cells are extremely low and that you barely have any blood in your body.  Sounds scary right? This is where I officially introduce you to my journey with Aplastic Anemia. 

This is me, Hello!

On October 2017 I was hospitalized for extreme dizziness, vomiting, fatigue, bruising, and shortness of breath. As an active as healthy person, having these symptoms was extremely odd. My husband took me to the ER, where they performed a series of tests including blood work, urine samples, etc,. We waited in a room at the ER for my results, and a nurse looked at me and asked if I realized how pale I looked, and neither my husband or I even noticed. At one point my blood pressure went down to 53/30 because my body was rapidly running out of blood. When the nurses realized this, they rushed me into MCU and requested an emergency blood transfusion. A blood donor SAVED my life at that moment and I couldn't be more grateful. Next time you refuse to give blood because you are scared of needles, think of the lives you could be saving at any given moment of the day!

Add This is my mom savings lives wooho!

After the transfusions I got some color on my cheeks and I felt wonderful. I thought it was over, but it was only the beginning. To give you guys an idea of what my blood count was when I got to the ER my hemoglobin was down to 3.2, normal hemoglobin ranges from 12-14. My RBC and WBC were at 1, normal ranges from 4.2 to 5.4. My platelets were at 16,000, normal ranges from 150,000 to 450,000. No wonder I looked like the walking dead lol. Obviously I didn't know any of this at the time, and it freaked me out. As I lay down on the hospital bed I heard a lady walk in, she introduces herself as Dr. King an Oncologist/Hematologist. After introducing herself, she notifies me that I have a bone marrow biopsy scheduled for the next day. 

The people that know me, know that I can tolerate pain. However, the bone marrow biopsy was an exception. Normally they will sedate you before preforming the biopsy, but the facility I was at did not give me that option.This was the most PAINFUL process I have ever encountered in my life. I'm not trying to scare any you, but I felt like I was being stabbed over and over with a 6 inch knife.The biopsy only lasted about 10-15 minutes but my lower back was sore for a couple of days. The reason it took so long was that there was hardly any bone marrow, in site they choose to extract bone marrow sample from. 

After being hospitalized for a few days, I was discharged with a fall/bleeding risk. I went home and rested as I awaited for my biopsy results.  During that time I got on my knees and I prayed hard, I prayed for guidance and answers. I never asked God why this is happening to me instead,  I asked what was next? What will I be getting out of this? How can I impact others with my experience? I think thats what truly inspired me to write this blog. 

Dr. called me with my results and to my surprise they were inconclusive, but it was confirmed that I did not have Leukemia; which is a cancer of the blood. I was relieved it wasn't Leukemia, but I still had no idea what was wrong with me. My primary oncologist referred me to another hospital to performed ANOTHER bone marrow biopsy. I was SO stressed and frustrated, but it was the only way I was going to find out what was wrong with me. We proceeded with the second biopsy and thats when I was officially diagnosed with severe aplastic anemia. I didn't realize the severity of  my AA until I was asked if I had a healthy sibling in order to conduct a bone marrow transplant (BMT) to cure my disease.

Little did I know my 14 year old brother's stem cells could potentially save my life and provide me with the permanent cure to my disease. However, a BMT can only be done if your sibling is a FULL MATCH, there is only a 20% chance that a related sibling could be a full match. 

With nothing to lose Jose and I submitted our HLA type kits to determine wether he would be a match. This process took two weeks, and those two weeks seemed to creep by slowly.There were times that I let my problems take up the whole picture but its all about perspective. The stress and frustration did more harm to my blood counts than anything else. It was very important for me to stay calm, be patient, and trust God. 

It was a Friday evening on December 15th I had just finished getting a platelet transfusion, when my doctor called me to deliver the news. My 14 year old brother was a FULL MATCH!! A 14/14 MATCH!!  Its extremely difficult for me to put into words how I felt when I heard the news, I felt joy but at the same time I felt scared.  However, I knew at this point that God was in control. 

This is my 14/14 MATCH!!

It was then that I was transferred to MD Anderson Cancer Center in Houston,Texas. I relocated in order to be in the same state as my brother who was also my donor. You guys will not believe what I had to do once more after coming to this new hospital... ANOTHER bone marrow biopsy. Yes! My third biopsy in matter of 3 months! Have I mentioned how much I hate bone marrow biopsies? 

Before I continue with my story... I must admit a few days ago I let my emotions take over me. I was frustrated, stressed, sad, confused, and just down right angry. I kept asking God, why me? Why do I have to go through this? What have I done to deserve this? 

The next day I went to church and through the sermon, God said to me: 

"Every branch in Me that does not bear fruit, He takes away; and every branch that bears fruit, He prunes it so that it may bear more fruit. Meaning sometimes God will prune the good out of you in order to produce the BEST in order to produce a PURPOSE in life. Don't be afraid of these sudden changes in your life, God is preparing you and renewing your strength like never before!

As I get closer to the date of my stem cell transplant I start to accept the process and handing it over to God. I will be going thorough high doses of chemotherapy for four days in order to kill the remainder of my white blood cells in my bone marrow. The chemotherapy will be taken with rabbit ATG, which will serve as an immunosuppressant drug in order to prevent the immune system from attacking my brother's stem cells. Its okay if you didn't get that, it took me a while to understand the process as well. 

For those of you that will be doing a BMT as your treatment, be prepared to lose your hair and compromise most of your organs with the chemotherapy and ATG . Its not easy to accept that I will losing my natural long hair to this disease. Even to this day, the thought of it makes me want to cry, but I would rather lose my hair than lose my battle to Aplastic Anemia. The cure to this disease will be permanent, losing my hair will only be temporary and it will grow back.  

I am currently on my third day of chemotherapy and ATG, Its has not been fun at all. I've experienced most of the common side effects of the drug. However, I have been making the best of it. I've working out and drinking a lot of fluids in order to cleanse my liver and detox from the chemotherapy.  I haven't experienced any side effects from the chemotherapy but I have experienced plenty of side effects from the ATG  such as rash, vomit, cramps, headaches, sleepless nights, etc,. 

Tomorrow will officially be my LAST day of chemotherapy and ATG and I could not be more excited! I am over it all! I am ready to give my poor body time to recover from all the medicines that I have received in order to prep for the bone marrow transplant.  

BMT will be happening on 30th of January of 2018.  It's definitely overwhelming, but I cannot stress the importance of having a good support system. If it wasn't for my parents, brother, and my amazing husband I would have probably lost my mind.

Some days are harder than others. Some days I am happy and excited about the process, other days I feel overwhelmed and  anxious. 

It is completely normal to fear at times but NEVER let your fears become greater than your FAITH. Personally, the best way to occupy my mind is thinking about all the fun things I will be doing once I am cured from Aplastic Anemia. I am looking forward to inspire others with my testimony and be used by God to spread hope, amongst the individuals going through similar situations. 

Update! 

Bone marrow transplant went exactly as planned! I am officially done with the whole bag of stem cells. The team of nurses made sure I  got every single drop lol.  Shout out to the team of prayers that kept me in their thoughts throughout this process. To my husbands family, The aplastic anemia group on facebook and everyone that is reading this. I am forever ever grateful.  I am looking forward to a long healthy life!

My HERO!!!

This is Jose's Bone marrow! How cool?

Jose and I bonded and ate some popcorn as his steam cells entered my body. Popcorn is always a must haha

Bye bye Aplastic Anemia you messed with the wrong chick. We fight HARD!!  

I will try to keep you guys updated with my recovery months. Stay tuned! 

Update! 

I am currently on DAY +7 everything is going well. I haven't gotten any infections THANK GOD!!  I have a few mouth sores that keep me up at night but other than that I'm feeling strong and healthy. I started receiving the "Neupogen" shots in order to help increase my white blood cell count that is currently at 0.0. Thats all for now :) 

Update!

I am standing at day +13 my WBC went up from 0.0 to 0.8 my mouth sores are finally going away and I can finally eat and drink without any difficulty. Also my ANC is at 600 which is great news. If everything keeps improving I should be getting discharged very soon. The key is to keep a good attitude and stay positive, ever since I decided to take it slow and keep a good attitude my days have flown by. It's an intense journey BUT it does get better.  


This is DAY+16 

My WBC is currently 2.5 and my ANC is over 2,000 I should be getting discharged from the hospital in the next 3-4 days! YES I am crying over excitement... There is always light at the end of the tunnel! IT GETS BETTER! 

***I wanted to take a moment to give some suggestions for the after effects of chemotherapy/ATG. A week and a half after I ended chemo, I began to get the worst mouth sores ever. My parents bought me this particular item that numbed my mouth and provided me with temporary relief, enough for me to be able to eat food and brush my teeth. 

***Buy organic virgin coconut oil and use it as a mouth wash to disinfect or prevent mouth sores. This was suggested to me by a NURSE it works, use this before, during and after chemotherapy** 

Day + 54 Update. 

I have been doing so well, I am able to do almost everything that I used to do before I had Aplastic Anemia. My body has officially engrafted and 100% of my cells are my donors cells.  I am also off IV infusions and the doctors will be scheduling an appointment to remove my central line in a week.  Things are definitely looking up. 

This is what my blood counts look like on day +54

 I had my central venus catheter taken out on day +55. I was finally able to take a nice long shower, without having to worry about my CVC getting wet lol! 

This is day +69 today the doctors just declared that I had a perfect transplant. I have 30 more days until I can go back to my home in FL. Everything has gone exactly as planned, we are beyond blessed. According to the "Post-transplant stem cell engraftment report" T- cells are 98% my donor and my Myeloid cells are 100% my donor. I started going to the gym since my platelets have remained above 100k 

First leg day after transplant 

Per my mothers request I am updating my blog today. I am on day +162. My labs have been very stable, I already went to my first concert and traveled another state. I work out regularly I feel human again, I can do most things that normal people do. My mental and emotional health have taken the most time to heal but I've put it all in prayer and lately I've felt liberated from fear and anxiety. Last week was my first time not wearing a wig in public and I get complements from at least 3 people a day about my short hair which is truly empowering. It makes my day every time and yes I will post a photo.  This process has truly taught me to value life, to live every day like is my last and to never ever take anything for granted. I am not thankful for Aplastic Anemia but I am thankful for the life lesson that I learned at such a young age. Life is truly about surrounding yourself by people who care about you, enjoying the little things, not to stress and taking it one day at a time. I am so grateful for this opportunity. If you ever need someone to talk to please email me at valeriehgn@gmail.com I'd love to hear your story and answer any questions about Aplastic Anemia journey <3

Hey yall! I just turned a year old lol! I am officially celebrating my one year post transplant. I have traveled all over  Europe, been to concerts, festivals, beaches and in March I will be going on a cruise! Life has surely gotten better since my transplant. These are the days I looked forward to when I was in the hospital bed exactly one year ago. I pray for all you AA warriors out there, Im proud of your journey always remember to keep your head above water and never ever give up. It does get better, there is always that light at the end of the tunnel. As I reflect on my one year post transplant, I can say that my outlook in life has changed so much. I truly know now the real meaning of happiness and making the best of the little things in life.

If my story inspired you and motivated you to donate here is a few websites I found for more info!

https://bethematch.org/

https://www.dkms.org/en/register

https://www.giftoflife.org/