Category: DIAGNOSIS & TREATMENT

Not Going to Be A Walk in The Park

In order to see the light, we must first confront our darkness. For so long I struggled with writing down my thoughts because I was afraid of what might come out onto the pages. I wasn’t ready to share with others what this darkness had done to me, what it had taken from me. It all had happened so quickly. With the confirmed diagnoses of Paroxysmal Nocturnal Hemoglobinuria (PNH) and Aplastic Anemia (AA), the googling was in full effect. My mind was racing with so many questions, but I remember barely being able to speak.

This was someone else’s life, not mine. Not now. Why now? Had I done something to bring this upon myself? Can I handle this?

My doctor had asked me about a healthcare directive. No, I didn’t have one. Oh, God… Why? Do I need one? Am I going to live? No time to sit and dwell on those questions now, my doctor had just explained to me a treatment to help with my Aplastic Anemia. It is an immunosuppressant called Antithymocyte Globulin (ATG), a treatment derived from horses. Yes, I said horses. Another alternative is derived from rabbits. “It’s Not Going to be a Walk in the Park” she said. That statement is now burned in my brain. No, it certainly was not a stroll in the breeze. It was more like a slow torture that dragged me on the floor and stood on my neck.

I had arrived at the U of M with my PICC line inserted into my right arm. I was on the Bone Marrow Transplant floor. This was to be my home for the next several days while I get this serum pumped through my body. The first night was brutal. As a precaution in the event of a reaction, this is NOT supposed to be administered at night and should be given at a slow rate of infusion. Of course, my treatment was given to me at night and at the highest speed.

I was in the middle of a sentence, and suddenly my body started to uncontrollably shake. I had rigors, low blood pressure, fever, vomiting, and night sweats. I was brought into the ICU because of all the reactions I was having to the medication. My platelets were lowered to just 5,000. Many patients actually respond well to this treatment with little to no side effects. I was faced with them all.

After I was released from the hospital, I was lethargic and could barely walk. A day later I had developed mouth sores all over my lips and inside of my mouth, down my throat. There I was, black and blue, puffy face from all the prednisone I was on. I was so weak. My mother had to practically carry me down the hallway to get to the car. I had to go back to the hospital, because my first experience wasn’t joyous enough. This was another reaction to the drug that could have been prevented. My purpose in sharing some of these not so pleasant details is not to scare you. It’s to show some of the physical demands on the body that many patients go through at one point or another. However, having a diagnosis is so much more than its physical features……

LOVE Conquers In Times Of Uncertainty

I was watching The Today Show yesterday and Hoda Kotb said something that resonated with me. ‘Share your gift to the world right now’. ‘Whatever that might be, just put your gift out there for the world to receive.’ I believe that one of my gifts that I can put into the world is my writing, and telling my story. With the COVID-19 crisis currently in the spotlight, so many things of day to day life for us all are rapidly changing. So many of the things that the world is now facing, a chronically ill person has been dealing with WELL before the Coronavirus.

Right now you may be:

  1. Uncertain, scared, or worried about the future
  2. Feeling you have no control over what is happening (when you are used to having control)
  3. Feeling the Emotional Effects of Social Distancing/Self-Quarantine (loneliness, depression, anxiety)
  4. Experiencing Lack of Employment or Reduced Hours which could lead to financial hardship
  5. Experiencing Travel Restrictions
  6. Experiencing Changes in your Relationships due to Social Distancing
  7. Having a heightened awareness of Cleanliness/Hygiene

Honestly, many of us who are living with a chronic illness are faced with these challenges on a regular basis. There were many days during and after my treatments that I was unable to go out of the house because I wasn’t feeling well. Almost every day, I think to myself things like: How am I supposed to make enough money to move out of my mother’s house? If I don’t feel well, how can I work full time? What about my student loan debt that I can’t pay off? Will I find a partner who will love all of me? (I will write about relationships and diagnosis in a later post!)  I have many days of uncertainty!

With all of this being said, in any state of crisis we have the ability to see and do some amazing acts of KINDNESS and LOVE. When I was going through my rounds of initial treatment, I remember those who surrounded me. I felt the love when I was scared and helpless. It has kept me alive. If I did not have that, I don’t think I would be here. I hope Everyone is able to stay safe & healthy. Share your LOVE & for the Love of God Share your Toilet Paper!!!

Standing In The Ashes Of Who I Used To Be

Stepping under those florescent lights had burned away this young woman I used to know. That’s the honest truth. I had now entered into a world that replaced my identity with obscure numbers and letters on a spreadsheet. PNH is a life-threatening blood disorder caused by a mutation in the PIG-A gene. As a result, the red blood cells in a body destroy themselves and create overall bone marrow failure.

 Here are some numbers about me that you may not know. When I was diagnosed with PNH my Hemoglobin was at 6.7. Hemoglobin is essentially your red blood cell count where iron is stored. The normal range for an adult female is anywhere between 12-16. If your body cannot produce enough Hemoglobin, your cells do not get sufficient oxygen. Platelets are an important function in the body because they help form clots to prevent spontaneous bleeding. A normal platelet count ranges between 150,000- 450,000. I had a platelet count of 10,000.

PNH affects 1 person per 1,000,000 (million) people in the general population. One third of those with PNH will develop Aplastic Anemia (AA) at some point in their lifespan. I have both.

My body was attacking itself, and I could do nothing.

My parents could do nothing but sit in that tiny room with me. Then the questions started shooting out in a panic. To this day, I can still hear my dad’s voice raising at the doctor and shouting “Is it something in her diet?!?!” I swear I thought the whole clinic could hear. He would continue to ask this at several appointments in the hopes that this could be solved with a minor diet tweak.

I was later moved into another little room for my first of several bone marrow biopsies. I lay on my stomach quietly as the doctor explains the procedure. The extraction of bone marrow is as about as pleasant as it sounds. I focus on my breathing while what feels like a wine bottle opener is being pierced through my back. Anesthetic NOT included.

In those moments, under those lights, I had lost myself.

My body was gearing up to fight and survive, while my mind and sense of self shut off. I was a medical record number (MRN) now, I was a collection of cells under a microscope, I was defective, and I was a lab experiment. I was not Sarah. People were talking around me now, not to me directly. I felt nothing. I was numb. I fought the acceptance of my diagnosis for so long. I wanted so badly to hang on to my former self, but I realized she wasn’t there anymore. I was chasing the girl I used to be, and denying a part of me that would change forever.

I am one in a million. After struggling to accept for so long, I now embrace.

Hello, Ignorance!

When thinking about life in general, I always go back to this idea of choices. Every day we have the ability to choose. Even getting out of bed in the morning is a choice. What kind of a partner do you want in your life? What career do you see yourself in? Do you drive the freeway or the side streets?  Do you choose to have a salad for dinner, or eat the 10oz. steak? An endless amount of choices that lead us all down different roads of life. This was my way of thinking along with many other blissfully ignorant people.

I had just recently turned 28 years old. I knew I wanted to help others, so I chose to work hard and was able to earn my Master’s degree in Psychology. I paved my own road, on my own terms. I chose to celebrate being done with school by taking a trip to Europe alone with some money I had saved up. When I came back from my trip I was ready to make my mark on the world right alongside all of my classmates. I was so young, eager, and excited.

I can remember the night that I got a single phone call that would change my life forever. Nothing can prepare someone for these moments. The nurse had left me a voicemail to call back as soon as possible. She had told me that my blood work had come back and that my counts were all extremely low. She then rattled off a bunch of numbers and she said she was shocked that I was still walking around. “You need to see a Hematologist Specialist right away.”

I had no clue that the bruises I had been getting in that summer of 2014 meant that something was wrong. I had thought that I just had low iron. My body was numb. My mind was slow, yet running so fast at the same time. I had so many questions; they never made it out of my mouth. My voice shook and stuttered as I asked “What does this all mean?” She calmly said “We don’t know yet, but you need to be seen right away.”

I was busy planning out my career, and blazing my own path. Everything was changed from that phone call on. When you are asked to dance, most of us are afforded the right to say “no thanks, I’d rather not.” Or you can choose to say “yes, I’d like that.” The devil came up to me and did not ask me if I would like to dance. This thing grabbed me, took its grip. It’s name was Paroxysmal Nocturnal Hemoglobinuria (PNH) and Aplastic Anemia (AA). What now? I had wanted to take a Left onto the street named ‘starting up my career’, now in a blink, non of that mattered…..

MY LIFE: RECALCULATING…. RECALCULATING….