With January being National Blood Donor month, I thought it would be appropriate to share a little about ITP (Immune Thrombocytopenia), the rare blood disease that I have and many others as well. As a quick recap, ITP is a blood disorder where: 1 – Your body doesn’t produce enough platelets or 2 – Your body attacks your own platelets. Platelets are important because they are what helps clot your blood, if you don’t have enough platelets, you’re prone to internal bleeding, bruising easily, extreme fatigue, bleeding out and many more. For context, normal platelet count is between 150,000 to 400,000.
This year with my blog, I am trying to get other people’s stories incorporated. I’m trying to get other voices heard and today, I have some great information for you. I asked a few of my ITP Warrior friends a question about their journey with ITP and the answers will surprise you. They have shared personal experiences that I feel the world needs to hear and know about. Living with a chronic illness is so difficult, but these warriors are doing it. Please keep reading for just a glimpse into what living with ITP is like.
I have watched my fellow warrior, Jose, go through it all in the last 4 years of us connecting. I always appreciate how open he is about his ITP journey and creating awareness around it. Jose lives daily with his platelet count in the single digits. I asked him a couple questions and here is what he had to say.
How long have you had ITP and what treatments have you tried?
I’ve had ITP for 21 years, tried of all of the treatments available and nothing has worked thus far. My doctors have had me try; Promacta, WinRho, Rituximab, Dexamethasone, Prednisone, Tavalise, Doptelet, Nplate, Oselamivir, IVIG and 2 research studies, PlaceboEfgartigimod and Ruby-4. All with no success.
If you could share something with ITP researchers, what would it be?
My body. I’ve already participated in two research trials and I’m open to more. The more I’m able to participate in research, the closer they may get to finding a cure.
Jose
I met Christine through the ITP Community on Instagram. We both had ITP and I’ve watched her with her journey through it the last few years. She is a strong, amazing woman, that has been through quite the roller coaster.
What current ITP Treatments are you on and how do they make you feel?
When my platelets drop below 20, l usually do a round of steroids and lVlG (Intravenous Immunoglobulin) while l wait for the insurance to approve my treatment of Rituxan. The high dose of Dexamethasone (steroid) is accompanied by many Gl problems, so l have to add multiple medications and change my diet when I’m on treatment. I also feel a lot of numbness and get hot flashes. Insomnia is a pretty chronic side effect from the steroids, which does a number on your psyche, especially when you are doing multiple rounds and go weeks with very little sleep. lVlG has often given me a hard time. Not every infusion is difficult, but when l do have a more severe reaction, it includes very high blood pressure, fevers, chills, difficulty breathing, chest pain, and body aches. A difficult lVlG treatment will trigger my depression and anxiety.
After each infusion, l always deal with frequent headaches for around a week, as well as low grade fevers. I also get pale and have muscle weakness. Rituxan has proven to be the most difficult treatment of them all. I have completed Rituxan three different times and have yet to do so without needing to put treatments on hold. During the infusion, I've experienced chest pain, difficulty breathing, nausea, chills, fevers, headaches, heart palpitations, severe stomach pains, high blood pressure, and body aches. The side effects always continue after the infusion ends and include hair loss, joint pain, chronic fatigue, anxiety, depression, Gl problems, and infections. Rituxan can usually stabilize my platelets for up to a year or so but the first Rituxan infusion is always the hardest and the side effects last sometimes months after completing the treatment.
Christine
Have you ever met someone and just vibed with them instantly? That’s how me and my friend Alex were. ITP brought us together via Instagram and it created a cool friendship. He is an amazing husband and father; that has to deal with the roller coaster of ITP on a daily basis. Here is what Alex shared with us.
How difficult has this experience with ITP been for you and the effect on your life?
To even ponder this question means that I need to lay down the veneer of armor I wear on the regular; to put aside the brave face I sport around so many in my life. Because this rare, unpredictable disease I have is so difficult. I try to lie to myself and many others around me constantly. To do otherwise might be maddening. To give into the reality that this is difficult, very difficult, would mean I’m letting this disease win, and its reality of constant uncertainty and hardship has the upper hand. My journey started when at the height of the first wave of Covid. I did multiple multi-day stints in the ICU when I first was diagnosed. I had a nurse come in once and tell me I was the only one on the floor who was able to speak and asked if I cared if she took a break with me in my room so she could escape the horror beyond my door. I watched from my bed through the window in my ICU door as four people passed away on a random Tuesday, as doctors and nurses geared up in hazmat suits each time to bring an iPad so loved ones could say goodbye to their Covid-stricken family members. That was just the first month and my initiation to this rare disease.
I’ve been scared by countless nurses and doctors when my numbers are critically low to cushion myself in bubble wrap. I’ve been warned not to let my young boys play rough with me when my numbers are low, not to ride the OneWheel I love so much when I start to get random nose bleeds or see massive bruises appear for no reason. I have this rare disease, but I’ve been told I’m even more rare because I’m treatment resistant. Thankfully, after experimenting with more treatment options than I can count, my world-class medical team and I found an IV treatment that temporarily lifts my platelet count for a month or so. But unfortunately, it must be administered in the cancer ward of my treatment team’s hospital, where I’m surrounded by those fighting and suffering a much more difficult battle than myself. Every month, I must endure this mental battle as I trek into a place of such misery and hardship just so I can get my own 7 hour treatment to be “normal” for the next 4 weeks or so.
But like a lotus growing out of the muck, my life has become incredibly enriched because of this difficult disease. I have learned an appreciation for life in my early 40s that many my age won’t learn for decades. I see silver linings everywhere. I have taken advantage of the countless hours alone in a hospital room to craft and hone a style of art that I’ve been searching for ever since I picked up my first pencil and brushes as a young child. Because of what we’ve gone through together, my wife has also been inspired to follow through on a long-held dream to become a comedian. We both have learned through my experiences that tomorrow is not promised, and quieted the internal critic in our own minds and instead followed our passions. Colors are brighter, life in a sense is easier, and the BS that normally would consume falls off like water from a duck’s back. So while, yes, this disease is incredibly difficult, I only allow myself to realize it at rare times. Instead, I do my best to focus on all of the wonderful things it has brought to me. I keep a positive attitude, because the immense reality of the situation would otherwise crush me. I have learned many wonderful lessons because of ITP, and joke at times now that I can’t imagine how many more lessons there are left to be discovered. But that is the thing about having a rare, difficult disease. There always are more silver linings to be seen.
Alex
Nina was another one that I just vibed with instantly. She was also in remission from ITP so meeting her gave me so much hope. While there isn’t a scientifically proven cure for ITP, we all have our own theories. Below Nina shares her challenges and changes with ITP.
I often get asked what I did to get my ITP into remission. The short answer would be a protocol of Chinese herbal supplements. However, I would be doing my fellow ITP warriors a disservice if I didn’t mention the other things I do on a continual basis that work together to keep me in remission!
After I got into remission, my platelet count was great. However, I continued to catch every cold and flu that went around. I still felt low-grade “yucky” much of the time. I hadn’t yet realized how powerful some lifestyle changes could be. The first shift was in my nutrition. I cut out gluten, dairy, refined sugar, corn, and soy from my diet. That included all processed foods. All of a sudden, I started feeling better
overall. I realized the foods that I cut out had been causing inflammation and the inflammation had been causing me to feel "red, weak, and lacking energy. After making the shift to more natural foods, I decided to switch to natural products in my home. I learned that most of the cleaning products and personal care products in our homes contain toxic ingredients that harm our health. I began to seek out plant-based products that didn’t contain harsh chemicals or artificial fragrances. Around this time, I also wanted to support my overall health with other natural products and I incorporated essential oils into my health routines. I found essential oils could support many aspects of my health such as: bringing my
immune system back into balance, easing my painful menstrual cycles, and helping me relieve stress.
If I had tried to make these changes all at once, it may have been quite overwhelming. However, many small steps over a few years has made a huge impact on my health. I believe it is what has kept me in remission without a relapse for the past seventeen years. I believe in giving back to my ITP community
and I’m passionate about helping others on their journey towards healing
Nina
I’m so very grateful for my fellow ITP Warriors participation in my own curiosity and allowing me to share it all here with you. Living with a chronic illness is not easy, especially when it's an invisible one. People often don't get it because you "don't look sick". They are strong, determined and the real MVP's! Hopefully you learned something new or found a takeaway from at least one of my friends above.
We have ITP but ITP doesn't have us.
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