Tag Archives: repurposed drugs

More Than a Patient

The man who saved my life, twice. Dr. Ahn.

We often talk about great doctors, those men and women who treat us with dignity and respect. They listen to us, help us, work with us, and care. Those doctors are special, and when they retire or move away, it is difficult to replace them.

When I received the letter informing me that Dr. Ahn was retiring effective February 2018, I was sad but certain that another physician at the University of Miami would take good care of me. Would they be Dr. Ahn? No, no one could ever be him. I certainly never imagined I would be treated horribly and struggling to get Rituxan for a second time.

Which brings me to writing this blog. Today I had my one month post-Rituxan checkup, and my platelets are holding strong at 236,000. Besides feeling relieved and victorious, I also became very emotional. It dawned on me that none of this would have been possible without Dr. Ahn. Had I been diagnosed after he retired, who knows where I would be (or if I would even be alive). He gave me the tools to fight this disease, fight for myself, and fight for a better world for patients like me.

I thought back to the scared 27 year old in his exam room, unsure of what the future holds. I felt like my life was spiraling out of control. I questioned if life was worth living, if my existence was a burden on everyone around me. I was beaten down and demoralized by my diagnosis, yet this man saw something in me that I could not see in myself. He saw the real me, the fire and determination that while stifled at the time, was under the surface. It just needed to be cultivated within my “new normal”.

I didn’t realize it, but Dr. Ahn took me under his wing and started teaching me about my disease, how the human body operates, and what he had learned over decades of studying platelet disorders. He sent me home to research treatments not because he didn’t want to treat me, but he wanted me to find the answer myself and come back to him. He was building up my confidence and repairing my broken spirit. I was being taught to think like a researcher, to put myself in Dr. Ahn’s shoes. Little did I know, five years later I would be using what he taught me to save my life again. Only this time, without him there to coach me.

If I had to describe what fighting ITP is like, I would liken it to walking a tightrope. Under Dr. Ahn, I had a safety net. My fear of falling was minimal because he was there to protect me. This time, it was like showing up and discovering you have a rope and a stick. No safety net and no one to help if you fall. Despite this, I stuck to what I knew- everything Dr. Ahn taught me.

Here I am in remission, again.

While Dr. Ahn treated my ITP, he also assisted me in rebuilding my life with a rare disease. I often joke that he created a monster, but truly I would not be where I am today if not for him. His lessons and mentorship helped me fight ITP in his absence. He gave me the confidence to walk the tightrope without a safety net.

I’m forever grateful that he believed in me, and saw my potential at the lowest point in my life. Every day is a gift, thanks to Dr. Ahn.

The Doctor Didn’t Listen

When I found out my platelets were below normal this year, I went through a variety of emotions, but absent was fear. I was in remission for four years and three months, surely I could do it again. After all, I was in the same hospital system seeing a colleague of my favorite doctor, I thought for sure it would be smooth sailing.

I was wrong.

I had to push for weekly CBCs, not being taken seriously about how quickly my platelets could crash. Two weeks later, I dropped from 129,000 to 53,000. I was put on Prednisone, the drug that destroyed my body and left lasting damage. The doctor assured me it was only a temporary treatment. I thought once ITP showed him what it was capable of, he would take what I say seriously.

Again, I was wrong.

My platelets started to rise, and stayed stable on high doses, but that drug was killing me. I kept asking my doctor about Rituxan, my life saver. The one drug that Dr. Ahn and I knew would put ITP into remission. It dangled in front of me like a carrot. He again refused to prescribe me Rituxan, he was perfectly fine leaving me on the drug that was destroying my body. The doctor kept saying, “Rituxan is not a benign treatment.”

I was in self-preservation mode at this point, getting worse as the weeks went by. I found my new physician, who knew Dr. Ahn and his research. I opened up to him about my desire to use Rituxan and he didn’t string me along. Instead, we created a plan based on how I wanted to fight ITP.

Rituxan worked, again.

I spent four weeks watching as the infusions started fighting back. I also was slowly feeling like myself, regaining my identity beyond just being “sick”.

After all of this, my emotions are still a bit raw. However, I am reminded that Dr. Ahn gave me the tools to continue to fight this disease well after he retired. It wasn’t just preparation for a single victory against ITP, but a lifetime of fighting back.

So here I am, in remission.

The doctor didn’t listen, so I found one who did.

Infusion One in the Books

This is my “I’m finally getting Rituxan!” smile.

I’m home from my first Rituxan infusion, only three left to go!

While I’m smiling, I need to be brutally honest. Today was hard, the smile is put on. I’m tired, stressed, and I had another massive emotional rollercoaster caused by our broken healthcare system. I almost didn’t have my infusion today.

It was my first time taking an infusion at the elbow. While I had to focus on keeping my arm straight, it hurt a lot less and didn’t burn!

First, upon my arrival to the infusion center my authorization was not in the system. Instead of calling upstairs to get the information, they made me go upstairs to find the employee responsible. Why it couldn’t have been handled by a phone call I’ll never know. Just another part of the process where the systems and staff don’t seem to have an open line of communication. Insurance issues are handled in an entirely separate department and no one knows how to navigate it outside of a few people. Thankfully, the problem was fixed with a phone call down to the infusion center from the authorization staff.

When signing all the paperwork to do Rituxan last Tuesday, I had to take a pregnancy test to process the orders. It took my doctor a good ten minutes of navigating the EHR system to determine which of the tests was needed for Rituxan. At no point was a Hepatitis B panel shown, but apparently I needed that too. Unfortunately when I went to infuse today, my treatment was almost cancelled because I didn’t have the panel done. It wasn’t discovered until the Pharmacy was prepping my infusion. My amazing nurse got my doctor on the phone (he’s out on vacation) to override the testing requirement so we could get the prescription processing. She ended up drawing blood and everything came back fine.

At the time this all went down, I finally broke down and cried. This disease has been a constant source of unrelenting stress since March. I honestly never anticipated having this much trouble when ITP came back. Pair that with not sleeping and feeling generally miserable because of crashing platelets, I couldn’t hold in my frustration any longer.

While I tend to handle my disease with sarcasm, humor, and witty banter, I am still human with raw emotions. The system is not designed for rare disease patients, especially ones who are using off label therapies. We are forced to micromanage care, and anytime you look away, you risk someone else dropping the ball. Most of the time, those people are not the ones directly caring for you (like doctors or nurses), so it makes advocating for yourself much more difficult.

I absolutely hate having to be assertive, direct, and at times downright demanding to get what I need to battle ITP. I want to find creative solutions to the problems all of us rare disease patients face. Every time I’ve shared these bumps in the road, patients tell me their horror stories. I know we are not alone, but it seems like the system temporarily corrects itself for one of us, then goes right back to operating under broken processes. At the end of the day, this helps no one, because the cycle continues.

I hope that after all my infusions are finished and I am back in remission, I can work with payers, hospital systems, EHR companies, legislators and rare disease groups to fix a lot of these issues. There’s no sense in dismissing them once my treatments are over, because I will eventually be back in the system when I come out of remission again. I also want to turn negatives into positives. I want my challenges, problems, and pain points to help inspire change.

Now on to some interesting things about today’s infusion:

I had a reaction an hour in, complete with itchy eyes, throat and ears. I became flushed while my nose got stuffy. They had to stop the infusion and administer more Benadryl plus IV steroids. I had pre-meds of Benadryl and Tylenol, but no steroids. That’s likely what caused my allergic reaction (it was similar to what I experience with cats). For the next three infusions, I am going to ask for the steroids as pre-meds too.

My platelets went from 169,000 to 94,000 in 6 days. I am destroying them rapidly, so I am anxious to see how quickly Rituxan will work.

Food already tastes a little bland, but I’m hoping that will help me lose the 10lbs I gained from steroids!

Now that infusion one is finished, I am anxiously awaiting next Monday. Keeping my fingers crossed that the rest of the process is smooth from here on out. I appreciate the compassion shown by my nurse today. She went above and beyond to advocate for me when I felt defeated. She made it happen, and for that I am eternally grateful.

#PlateletsUp