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.

Pre-Visit Nerves

It’s no secret this go-around with ITP has been stressful. I thought by now I would be close to finishing another round of Rituxan, but since Dr. Ahn retired, no such luck.

Tomorrow I see my new hematologist again, he’s taking blood and after the results come back (within 10-15 minutes), a plan will be crafted. Why the nerves? I’m afraid of once again being told I need to “wait” for treatment.

Because my platelets can drop to zero pretty quickly, there is no sense in waiting around for it to happen. Unfortunately, ITP treatment varies by doctor and some are willing to wait until I get very low. I know my body well enough to know that will come quick, so acting now is best. After all, we wouldn’t wait until cancer reached a more advanced stage before issuing chemo. ITP should be treated no differently.

This is a short blog tonight, I need to try and get some rest, but I wanted to document my nervousness because I know there are other patients out there like me. I guess this is “normal”, but it shouldn’t be. I should be able to access the treatment that saved my life once before. I’m chasing that “new normal” I started blogging about almost five years ago. I want to go back to being myself, not living week to week between lab appointments.

Out of Remission, Back on Prednisone

Cue the long groan, I am out of remission and my platelets hit a startling 53,000 this week. This triggered swift action by my new hematology team, so I am taking 40mg of prednisone daily.

Before I get into that- let me tell you how much I love my new hematologist. Dr. Ahn retired February 2018, so I was nervous about seeing a new doctor. Friends of mine recommended Dr. Harrington at UM (who’s father happened to discover how ITP works). He’s brilliant, funny, and practical in his treatment of ITP, especially when it comes to steroids. I was so glad to hear him say he won’t keep me on prednisone for a long period of time.

One of those familiar “Purpura” bruises on my leg.

I had blocked out most of the negative experiences I had almost 5 years ago with steroids. After all the moon face, acne, weight gain, constant hunger, anger, poor temperature regulation, and insomnia were horrible. Well, that’s all back and I have been expressing my frustration about it. I was finally able to sleep last night, thanks to medical marijuana (more on that in an upcoming post). I wish I had that stuff back in 2014 when this journey started. I woke up this morning a bit more refreshed and less hungry. My goal right now is to not gain any weight while moving through this part of the treatment process.

Another sign, see that purple bruise in the 73? A simple pinch from my bracelets caused that.

I’m documenting bruises again and getting weekly CBCs. Obvious goal: using Rituxan again. But I run into the same problem I had in 2014, safety data is scarce. I’m leaning on my team at UM to trust that since it worked once, it will work again. Since I am traveling a lot this month, I am hoping by mid-May we will be able to get those infusions going.

If you have used Rituxan more than once for ITP and are willing to share your experiences with me (and your CBC data), please email me at [email protected]. I’m planning on doing something similar to what I did in 2014, creating a mini data set to show the efficacy of Rituxan for immune destruction of platelets.

There’s more to this story, I am still hard at work behind the scenes to get ITP patients access to a CD 20 inhibitor ON LABEL. Stay tuned.

Rituxan Finale!

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I am happy to report that I completed my final round of Rituxan yesterday. My platelets were at an impressive 193,000, a nice number considering I am continuing to drop off the prednisone. I should be off that completely by next Thursday. Then I will wait for my adrenal glands to start working again, after a nice 7 1/2 month vacation. In addition to that, there are further challenges ahead.  Continue reading

Rituxan Round 3: Failure Is Not An Option

IMG_3797Forgive me for not writing about this sooner. I had to schedule my third Rituxan treatment on Wednesday due to the Thanksgiving holiday and it kicked my butt! I was flatlined on Thursday, very little eating and enjoying turkey day with everyone. I tried to make up for it by eating leftovers all day on Friday. And yes, your eyes aren’t deceiving you, I had 234,000 platelets Wednesday morning! Continue reading

Round Two of Rituxan

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Two down, two to go! I can’t wait to be finished!

I managed to get through my second treatment of Rituxan yesterday rather quickly. I was still fairly nervous, this time the drip was quicker and there was no waiting period between the premeds and treatment. Thankfully I didn’t have any reactions, I wasn’t even tired from the Benadryl. I had my same wonderful nurse, Heather and yes they asked me if I had Ebola. I totally cracked up laughing when I was being processed. Even the guy at the desk couldn’t help but laugh. Not that Ebola is funny, but just the fact that you’re being asked if you traveled to West Africa in the last seven days since doing chemo. Yeah, I wish I had the energy!  Continue reading