THE UNSUCCESSFUL SUCCESS STORY OF AN ITP PATIENT
I tried to stay away from regular use of steroids as much as possible. But like with any chronic disorder, medication is inevitable. And to think that 8 months ago, I was going about my normal life thinking I was healthy as a horse and all the while my immune system was planning an attack on my own platelets.
Although it is not like it sprang on me all of a sudden. Come to think of it, there were some signs of platelet disorder way early.
I guess it all started with the bruises. For 5 years, I thought they were just bruises. Random. I mean, you get a little round purple bruise on your leg every month or so, you don’t really worry about it. You give some lame explanation like: “maybe it’s the hormones from my menstrual cycle” or “maybe I just bumped into something and did not realise”.
About a year and a half ago, I noticed that the bruises were getting bigger and more frequent, which scared me a little but the bruises sort of faded away in a few days.
I was travelling a lot by plane at the moment and every time, I came down with nosebleeds. I assumed it was the pressure and the cold air in the plane. Maybe the blood vessels in my nose burst because of the pressure or something.
When I got back home, there were more bruises and my gums bled when I brushed my teeth. I had my wisdom tooth taken out a few years back and I thought it was because of that. That’s typically me. I had a rational explanation for everything.
After 2 weeks, I was back in university and one morning as I was wiping my poo, I noticed blood. Not blood mixed with poo or old brown blood, but fresh bright red blood and that continued for a few days. All this time, I had a bruise like spot in my leg, but it was all hard and red and dotty and itchy. I thought it was a bug or something, Australia is known for all its bugs! Then it all passed and I went ahead with my life again.
Then one weekend, when I was at work, I noticed bruises on my arms. Now, this was the first actual warning sign for me. There was a normal purple bruise in my forearm and another one in the back of my palm. Now this one was different to the rest.
It was a small dark purple bruise but it radiated shades of red around it. This really concerned me as I have never had bruises in my arms before. The day after, as I was changing in front of the mirror, I noticed a bruise the size of a biscuit on my muffin top and another one on my upper thigh. I was finally starting to get concerned about all the bruises. And to add on top of that, the constant feeling of exhaustion had me worried. I mean, no matter how much I slept, the first feeling when I woke up was to go back to bed.
So, after 5 years of bruising and unexplained exhaustion, I finally decided to have my blood tests done. And thank goodness for that because the same night, my doctor called and she told me to go to the nearest emergency ward and get a blood transfusion. She said that my platelet counts were really low, 6.
I headed to the nearest hospital, where my doctor had called in informing them of my arrival all the while hoping that there must have been some kind of mistake with the lab results. I went into the ER where they ran more tests confirming that my platelets were indeed way below the average range.
The doctors present there ruled out haemophilia as a cause of the low platelets but they still had not quite figured out what was up, so they told me that they were going to keep me overnight to monitor my platelet count. They gave me prednisone. I was in the hospital for 3 days. They had diagnosed me with ITP and stuck to a treatment plan and discharged me.
The treatment: 40mg of DEXAMETHASONE for 4 days. For those of you who have not experienced “dexamethasone” or “the wrath of dex” as I like to call it, be glad because it is a very powerful corticosteroid. 40 mg of dexamethasone is equivalent to 200 mg of prednisone. Despite all the side effects like the feeling of time lapse, exhaustion and swollen lymph nodes, I took the medicine that suppressed my immune system.
I did another blood test when I finished my 4 days of dex and when the results came out, I almost did a double flip (except I did not know how to do a double flip!). My platelet count had soared from a mere 6 to a whopping 112 in 7 days so the treatment worked alright.
I had a consult with my haematologist (yes, I had a haematologist by now) and he told me that there was a 50% chance that I will relapse and I will have to go on the treatment again or work out some other method of treatment.
I was to do a blood test every other week or two weeks so my doctor could keep track of my platelet count. This experience made me embrace healthy living habits.
As a typical 21 year old living in Australia all by myself, I was into the fast life: fast and easy food, runs to the train station, power naps instead of sleeping. Now, I slept for good 9 hours, slow walked to the station as I didn’t want to fall and hurt myself and the best part, I started adopting good food habits: big breakfast with lots of grains, nuts and good fats like avocado and COCONUT OIL.
I started doing a YOGA routine every day since intense exercise was out of the question, given the slow healing of my muscles. I quit my morning coffee. Actually, I quit coffee altogether although I drank tea (I have quit caffeine completely now! Yay!). I quit alcohol, even though I was only a social drinker. I had hoped that it was enough to save me from relapsing, but with every blood test, my heart sank as my platelet count depleted.
By the end of June, my count had gone down to 12 again and my doctor started me on another round of 4 days of 40 mg dexamethasone.
I responded well to the dex like last time as my count shot up to 114 and it actually stayed above 100 for a few weeks. I was ecstatic! What more could I want? I had a more-or-less stable platelet count and it seemed like it was going to be that way for now and on top of that I was flying to the States to live with my mom. But a week after I landed in California, when I went for a blood test, my platelet had dropped down to 40.
I assumed it was because I wasn’t eating properly as I was living off junk food at the hotel that I was staying in. I was sad and upset and angry. I decided that I did not want to take steroids anymore because I did not feel like myself when I was on the dex.
Someone suggested that I try Chinese herbal medicine so I went on a journey from Santa Clara to Oakland and got a bag full of herbs that I was supposed to take 3 days a week for 4 weeks. The struggle of drinking herbs boiled for 3 hours with a whole “black” chicken cannot be defined. It tasted horrible, bitter and oily, but I was determined because I wanted to get better so I drank it for as long as was required. I was getting a blood test done every two weeks and at the end of the herbs, my platelet count had actually dropped down to 12 again.
I got referred to a haematologist in San Jose, who said that my ITP was incurable. I had figured that much by now. He also said that the dex treatment was probably not a good idea anymore now that we had established the chronic side of my ITP so he suggested that I start on the regular use of prednisone.
I did not have a choice but to comply. After all, I did not want to die from a brain bleed if I hit my head or something like that. Actually, I did not want to die. Period!
He also started me on multivitamins to compensate for the nutrients that my body requires to fight the battle within, slow-release iron tablets as my haemoglobin levels were low as well and CALCIUM and vitamin D tablets to counteract the effects of the steroids on bone density. For the PREDNISONE treatment itself, I was to take 30 mg for 7 days, 20 mg for 3 days and then 10 mg for 3 days to bring my platelet count out of the danger zone.
After that I was to take 5 mg every other day so I could keep my platelet count at a safe level. This was to continue for life, along with the multivitamins and the calcium. The iron I could ditch once I started menopause, but that is a long way from now. So in this tug of war going on inside my body between my rogue immune system and my platelets, my immune system sort of won.
Steroids are not something I want to have in my system even one day, let alone a lifetime. All the countless and annoying side effects make it anything but fun. The overheating of my body even though its 15 degrees outside or the growing appetite that never seems to go away or the fact that my mood changes faster than a bullet is not something I want to put up with. But sometimes you have to make exceptions when it is the question of life or death.
ITP has already lowered my life expectancy by 20 years so there was no way I wanted to add more years to that by being reckless. And yes, sure ITP restricts me from participating in contact sports and getting piercings or tattoos and I have to consult my haematologist before I take any otc medications or get any medical procedure done that puts me at a risk of bleeding to death (so, pretty much everything) but, it is not entirely bad.
I am living an almost healthy life with the help of the steroids that I loathed so much, eating good food, limiting my workout to yoga, sleeping good 8 hours and reading, heaps of reading. To be honest, I think this is the healthiest I have ever been, mentally and emotionally, though the same cannot be said of my “always exhausted” physical self.
I guess I cannot really call this a success story because steroids won, even though I didn’t want it to. But I am alive and living a good life so I shouldn’t really be complaining. Moreover, from my very first diagnosis, I have had tremendous support from my family and my friends. What more could I ask for? Thank you to everyone who stuck with me through it all.
(I hope some of you readers could relate to my experiences. Surely, it is not a fun journey when you have a disorder that no one can see, but if you want to share your story or of someone you know who has ITP, you know I will understand. Please feel free to contact me : firstname.lastname@example.org)