Hi, my name is Jose, I’m 30 years old, I’ve been living with chronic ITP for about 15 years, and I was diagnosed on February 7th 2003 at the age of 14 with a 4 hour nose bleed. One of many of the toughest days of my life living with ITP. I was hospitalized at Children’s Medical Centre in Washington DC. Many nurses told me, "you cannot get out of bed, we have to watch every step you make," I was worried and confused, asking “what’s going on with me”, I had many red rashes on my body, Finally a haematologist came to see me and my family and he told me “your platelets are low”. Me “what’s is/are platelets” he then explain to me what platelets are and what they do, he told me your platelet count is 4,000. At this point I was shocked and very confused. My first question after he said 4,000 was "Can I die from this?" My haematologist said “it’s very serious and your body is in danger right now but don’t worry we’re going to give you medicine”.
My first treatment was WinRho. About two days later I was finally out with the platelet count of 50,000 and they said "you have to follow up with the haematologist as soon as possible." A week later I followed up and met my new haematologist, great doctor, after we finally got to know each other for bit he said “well Jose I have bad news, your platelet count is 5,000.” Once again I was shocked, nervous and scared. He said "don’t worry we have the right medication for you that’s going to help you however you have to be admitted and as of right now you have to stay away from every physical activity." I asked “even soccer?” Playing Soccer was my life. He said “yes even soccer”... I was extremely sad. He finally said "we are going to give you IVIG; it’s a new treatment that’s going to help you better than WinRho."
Sitting with an IV line for 8 hours while the medication is going in was just terrible, the side effects were bad with migraines and nausea for 2/3 days as I remembered. Finally I went back a week later; my haematologist had a smile on his face and said “Jose your platelets counts are at 350,000”. My family and I were extremely excited. I finally said “yessss back to normal numbers” I had asked my haematologist if I can start to play soccer, he replied “at this moment no, I want you to be relaxed for the next 3 weeks and come back to see me and then I’ll decide if you can play soccer.”
3 weeks had past and I finally went in. I knew something was wrong because I had a few nose bleeds and red rashes on my body. My haematologist walked in the room said “Jose I’m sorry but you have been officially diagnosed with Idiopathic Thrombocytopenia Purpura, your platelets counts are at 1,000”. I started to cry because I knew I wasn’t going to be a normal kid anymore. My haematologist said “we’re going to do IVIG again” ....for about 5 months I did IVIG, platelets went up due to medication but always went down.
Next Plan: Splenectomy. In the summer of 2003 (July) my haematologist said “let’s try to remove your spleen”. Both my parents and I made a final decision. We all said “let’s do it” July 3, 2003 was the big day for me. I had a splenectomy. The surgery went well according to my doctor. He said "come back in a week." A week later: my platelet count was in the 300 thousands. My family and I were extremely happy again. My haematologist said “see you in 1 month”.
A month later: my haematologist came into the room, he didn’t have a smile on his face, and looking at his face I knew something was wrong. He said “I’m sorry but the splenectomy did not work for you, your counts are back down to 5,000.” For the first time in my life I felt helpless I left the room into the hallway crying, hitting myself, and kept asking “why me, why me”. All the nurses/ and some doctors told me I was going to be ok, I was going to be able to live but just being very careful with everything I do. (I would say this is the second toughest part of my life) living with no spleen.
Prednisone: My haematologist had mentioned a new medication to me which was called prednisone he told me the side effects about it and he said “let’s do it”. I started off with 50 mg a day for one month. In that first month I notice I gained about 20 pounds but my platelet count was around 50,000. After 3 months I gained a total of 30 pounds with a moon face, it was terrible, many of my friends did not recognize me. It was the worst medicine I’ve ever taken. By the fourth month we notice my platelets started to drop a little bit, by the fifth month I told my haematologist “this is it I no longer want to take it”. By the six month we started to taper it down. I was put on IVIG again. By the 7th month I was going back to my regular weight and by the 8th month, I was back at my normal weight. My confidence was back, I was a lot happier, stressed and depressed free.
Age 15-21. I was getting my platelets checked once a week, and every three weeks I was receiving IVIG, for all those years in and out of the hospital meeting great doctors and nurses along the way it was finally time to leave the children’s medical centre and go to an adult haematologist. Saying goodbye to my haematologist was really tough but he said “you will be in good hands in the next chapter of your life”.
Georgetown University hospital. After I turn 21 I finally went to my new hospital and I met my new haematologist. After meeting my new haematologist, she said “you’re at an adult hospital, we are going to try new things” I replied “I’m up for it because I wanted to be cured”.
Promacta: I took Promacta for about three months, we did not see any increase of my platelet counts, in between I was on IVIG. After 3 months she said "we are stopping Promacta because you are not responding at all." We said "ok."
For a few months I was back again with IVIG.
Rituximab (Rituxan) After a few months my haematologist mention this medication “Rituxan” at this point she said she wasn’t sure if it was going to work but we were going to give it a try and I completely agreed. Well I had the IV line into my vein, the medication was going in, about 20 minutes into the medication, I noticed my throat starting to get tight, I was getting itchy too, I called the nurse immediately I told her I couldn’t breathe, she said "you’re having an allergic reaction", I was terrified I couldn’t breathe, all these doctors and nurses ran to me to make sure I was OK they gave me tons of Benadryl. I remember going to sleep for a couple of hours. Once I woke up I remember my haematologist being in there and she said “I am no longer going to give you this because you’re allergic to this medication so I’m sorry but it did not work for you so we are going to go back to IVIG”, I was really disappointed, sad and still confused about why treatment wasn’t working for me.
Age 23-26 at the age of 23 I had a meeting with my haematologist, I told her I did not want to take any medication whatsoever and to see what my platelet count was she was OK with my decision so between the ages of 23 and 26 my platelet count was around 30,000 to 40,000. She kept telling me I’m OK with those numbers as long as you’re OK, and you’re not playing any crazy activities, at this point I was going to school, going to work and trying to live a normal life but with extra care.
Age 26-29 I did not tell my haematologist but I made a decision to stop going. For three years I felt like I lived a normal life, I started to play soccer again, started to do crazy activities, I knew I had ITP but I was always extra careful. But at the same time I didn’t care because I didn’t have a lot of bruising or had many nose bleeds.
Age 29 On June 28, 2017 my life changed in a completely different way. In a scary way, I was having internal bleeding in my bladder because I started to pee nothing but blood and I noticed lots of petechiae spots on my body. I called my sister terrified; I told her "you have to take me to the hospital." She took me to the hospital as I was lying there at the suburban Hospital they did a blood test and they told me "you have a platelet count of 3,000 with internal bleeding." The scariest part was that the emergency room doctor told me "if you would’ve waited a few more hours you could’ve been dead." I was extremely scared. They gave me a platelet transfusion along with IVIG. I was admitted at the hospital for about four days because I also caught a viral infection. My platelet count went from 3,000 to 314,000. Before getting discharged, the doctor at suburban Hospital said "you have to go back to your haematologist."
July of 2017. I went back to my haematologist, she had heard what happened she was pretty upset and she said “don’t do that again” and I told her "I promise," that day my platelet count dropped down to 5,000, she said "I’m going to put you back on IVIG." Three days later, my platelet count was in 250,000. Five days later after receiving IVIG, I dropped down to 5,000. I was completely shocked because I only lasted five days she said “I’m sorry but I’m going to put you on prednisone again”. I really didn’t want prednisone but she said "don’t worry I am only going to put you on 20 mg hopefully this helps a little bit," I agreed to it.
Couple days later I was put on IVIG again. This time, it was very frustrating because I went up to 85,000, then again to 3,000. She said “I’m sorry but IVIG isn’t working for you”. I had asked her why isn’t it working on me anymore and since ITP is a rare bleeding disorder she had no right answer. For a couple of weeks my platelet count was between 1,000 to 10,000 with a 20mg of prednisone. After about three weeks or so she said “hey I want you to be part of new medical trial here at Georgetown University Hospital”. I agree to do it! She said "this most likely might help you."
So Georgetown Hospital did a clinical trial on me and The study was called “The Safety, Tolerability, and Pharmacokinetics & Pharmacodynamics of Multi-Dose TNT009 in patients with chronic ITP" it was a slow Lee injection medication that was going through my veins, we did two doses of this medication and it did nothing. By the third week my doctor said “I’m sorry we are going to stop it because it did not help you at all”. Once again I was really mad, very upset, confused and frustrated with my ITP condition because nothing was really working for me anymore.
Bone Marrow: In September my haematologist decided to do a bone marrow just to make sure things were OK. A few days later after my bone marrow, I got my results. My haematologist said "everything looks great you are not developing any cancer, your bone marrow is producing platelets but we don’t know why your platelets are dropping." It was very frustrating the fact that my haematologist didn’t know why my platelets were dropping.
NPlate: My haematologist said "hey there’s another medication which is called an Nplate." The first 2 weeks we didn’t see any good results but my haematologist did not want to give up on it, by the 3rd week I went from 1,000 to 14,000. I have been on NPlate now for 39 weeks. My highest count was 88,000 on May 28, 2018.
What does ITP mean for me: to me ITP is a roller coaster with many ups and downs? My Favourite quote: “Having a bleeding disorder doesn’t weaken me, it toughens me”.
What do I love most of about ITP? I am teaching/educating my friends and family more about ITP. I love to spread awareness, every week when I go to the hospital. All my friends and family are always curious to know my platelet count. I’m extremely blessed to have a great support system with my ITP journey.
ITP Warrior: I am Jose Cortez, just a young man living life to the fullest with Chronic Immune Thrombocytopenia Purpura (tough to pronounce but more challenging to live with).
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