Feature image from HERE
A little bit about John…
Californian based international business consultant working in the Asia-Pacific region.
How were you diagnosed…
I was in Japan with my family on a business related trip in the Spring of 2015. Prior to our departure, I had bitten my check while sleeping and noticed that it continued to bleed. After checking into our flight to Tokyo, I noticed a large bruise forming on my left hand from where I had just been bumped by another traveler’s suitcase.
During the 9-hour plus flight, I began to feel tired and noticed I had what appeared to be a rash forming on my hands and lower arms. Upon arrival in Tokyo and after checking in to the hotel, I felt exhausted with a large headache (I travel extensively to Asia from the US, so this was unusual for me).
The next morning, after I woke up, I noticed I had what appeared to be blood blisters on my tongue as well as blood spots on the pillow case of the hotel pillow. As this was the weekend in Japan, my wife who is Japanese, suggested that we discuss this with a pharmacy (Note: In Japan hospitals are only open for emergencies and not regular visits on the weekend).
This was done on a Saturday. The pharmacist stated that it didn’t look like an allergic reaction and I should see a regular physician. As the weekend progressed I continued to get more tired and the “rash” continued to spread on my arms and legs. My wife did some research on the internet and found information on ITP that seemed to cover my symptoms.
On Monday, my wife and I went to a few medical clinics who recommended we go to a major hospital. After looking at the neighborhood and after consultation we decided to go to the Red Cross Hospital located in Hiroo, Tokyo. After checking in and being seen by a nurse I was passed onto a Hematology/Oncology specialist who told me it was serious as my platelet count was dangerously low around 3. After going through additional testing (more blood work, CT scans, x-ray, EKG, etc). My platelet count went down to 1. I was admitted to the hospital and my treatment began.
How were you feeling before you were diagnosed?
I was feeling tired, run down and prone to upper respiratory infections. I also had pneumonia a few times in the years leading up to this.
Note: I have always had a comprised immune system since childhood, but I never had the ITP symptoms to this level. I was originally diagnosed with Sarcoidosis about 15 years earlier and had a non-cancerous lymph node removed that had gotten to the size of a golf ball. After it’s removal I never received any additional treatment as my condition had improved. That said, I was still susceptible to upper respiratory infections and I had put a lot of this down to the constant international travel.
When your platelets drop…
When my platelets drop I feel more tired and start to feel the need to lie down for a bit. I also notice I sleep quite deeply. Sort of the “where am I” bit when I wake up. In addition, I’m more susceptible to colds/flu.
When you have the flu…
My platelets drop a fair bit and I get worried I’ll start to see the bruising again.
I’ve always had stressful work and, quite frankly, I can’t tell that stress does anything different to my platelet count or not. I try to have a sense of humour about things, but I know that I can get really down when I’m sick and worry about going back to the hospital for an extended stay.
I prefer cooler temperatures, but I’ve not experienced great periods of being too warm after diagnosis.
I’m more of a morning person by the nature of my work. I notice that I sleep very deeply when my platelets are low as mentioned earlier.
I enjoy cycling most of all. Since diagnosis, I can cycle for upwards of one and half hours. However, I require a day or two REST between sessions. In addition, depending on my platelet count, my feet may get some sub-cutaneous bruising from the cycling shoes. I’ve been walking our terrier quite a lot as well for a few miles a day.
When I’m low I don’t feel like eating too much.
I try not to think about how my mood affects me with regard to my ITP. Again, trying to keep a sense of humour about it.
How has my life changed since my diagnosis?
I’ve adapted my diet to increase foods that reduce the risk of inflammation as well as tried to ensure a well balanced diet overall. I’ve also had to adapt to that fact that I’m not able to cycle quite as fast and long as I could when I was younger. With ITP its sort of become the old “the older I get (along with ITP), that faster I was”. I’ve also learned to appreciate what is most important in life, such as my beautiful wife and son and making the most of every day that I can.
Worst / funniest injury
While in the hospital in Tokyo after my initial diagnosis the number of bruises that started appearing everywhere started to scare me a lot. And to make matters even more fun, I was urinating blood for a few days as well. To cap off the first fun days in the hospital and of being scared in general the medical team had to do a bone marrow extraction to rule out blood cancers.
So, there I was, with my rear in the air discussing travel destinations and my family (the team in Japan was quite awesome and did a great job of keeping me calm and took fantastic care of me) as they continued to numb the area near the hip for the procedure. Once the team was satisfied that I was ready for the “extraction” of bone marrow the lead doctor suddenly said, “you are going to really feel this”. He was not kidding. The level of pain was something that I can’t even describe now. Human core sampling.
Dealing with ‘being sick’
I’m not the kind of person that really wants to tell people what is going on with me medically, even close friends and associates. If they ask (ie if they see bruising or needle marks from blood test and treatments) I will inform them of my condition. Since I have monthly blood tests coupled with IvIG treatment I have needle marks that are sometimes quite “bruisey”. I sometimes wonder if people think I’m an IV drug user, so I’m a bit self-conscious about this at times. Nothing like showing up at your child’s school in short sleeves after treatment with bruising around needle punctures on your arms. This is probably my biggest peeve in the whole process and in the end it’s quite trivial. Needles.
I’m currently being treated with eltrombopag (Promacta in the US) with a daily tablet of 25mg and monthly IvIG treatment. Due to my comprised immune system, which is most likely the cause of my ITP, I will require IvIG treatments for the rest of my life. IvIG is treating my Common Variable Immune Deficiency (CVID). The eltrombopag has been a life send in a way, as I don’t have to take prednisone.
PREDNISONE made me fell anxious and more hyper than normal. The IvIG treatment has also helped my immune system build up some level of defense and I don’t get the same number of upper respiratory infections as before. In the US medical treatment is ridiculously expensive compared to Japan and other countries. Orders of magnitude, but fortunately I have insurance and a very supportive wife, son, and terrier. Without them, I would most likely have ended up in worse shape or passed onto the next world.
For them, I am very, very thankful.