My name is Diana Hermosa. I am 31 years old and I was diagnosed with TTP in November of 2013.
During the last weekend of November, I felt extremely tired. This didn’t seem that unusual to me as I had always felt tired and it seemed like it was the norm for me. The following Monday, I decided to go to the gym after work and even though I did a light workout I had to stop, as I felt like I was about to vomit, so I decided to go home. When I got home I noticed that I had red dots on my back. I showed them to my husband and we both thought that they might be from the gym equipment, so we thought nothing of it.
However, the following day I noticed that the red dots had started to spread over my back and legs. I decided to go to the walk in clinic to get it checked and the doctor thought that they were little bruises and advised me to get blood work done. The next morning as soon as I got on the train at 7:30 am, I received a voicemail from Lifelabs telling me that I was in serious poor medical condition and must immediately go to see my doctor. Although the train hadn’t left yet and against their urgent voicemail I decided to continue with my day and go to work. While on the train I received another call, this time from the walk in clinic telling me that I needed to come in immediately and that I would need to go to the ER afterwards. Again, not thinking much of this I got of the train, headed to work to drop off my work belongings and then headed off to the walk in clinic. I told some coworkers as I was leaving that I would be back in a couple of hour’s tops, after the doctor appointment.
At the walk in clinic, I saw a doctor who told me that my platelet count was 7,000, and given that normal platelet counts are 150,000-400,000, I needed to get to an ER. I went to the ER, had blood work done and was later seen by a haematologist. He then told me that they thought I could have ITP because my red blood cell count and white blood cell count all seemed normal, but my platelets were extremely low. Unfortunately, they also told me that they’d have to keep me overnight to do further tests in the morning.
First thing at 6:30 am, they took 12 vials of blood. Later on in the afternoon they did a bone marrow test followed by an ultrasound. They were about to take me back to my room, when all of the sudden the nurse was told that there was a change of plan and I was to be brought down to get a catheter inserted in my neck. I was so confused. I didn’t know what was going on. My whole family was there with me while I waited for more information. I had been so strong up until this point, but as soon as I saw my mother and sister crying, I broke down. The catheter was very painful to say the least and as soon as it was inserted, they started the plasmapheresis.
The days that followed weren’t any easier. All the blood work (they said I didn’t have good veins so it was always difficult for them to draw blood), the catheter in my neck and the plasmapheresis seemed all too painful. After a few days, I had to deal with the fact that I was going to celebrate my birthday in the hospital. I told the doctor the morning of my birthday that I had 2 wishes - (1) to get a private room, as I was about to have a party with my family, and (2) to have a bath. I didn’t get to have a bath, but the doctor and the staff were kind enough to arrange a private room for me. I had a wonderful celebration with my family. That, along with getting my treatment made my birthday a special one.
My platelets started to slowly go up. The day of my birthday, my platelets were up to 46,000. However, they started to go back down and a couple of days later, it went back down to 9,000. My haematologist decided at this point to have a talk with me to explain to me that I wasn’t responding well to the treatment. As soon as I heard that, my heart sank. She mentioned that the next alternative was to give me rituximab. She said I should consult my husband before getting back to her about whether or not we would like to go through with the application. I didn’t bother waiting for my husband and told my doctor to get the application started. From that point on, my condition started to worsen.
One morning, just before I started my treatment, I tried saying something to my nurse and noticed that I was slurring. I tried saying it again and it was still a slur, it was then that I realized the left side of my face had gone numb. The numbing sensation travelled down to my upper arm and all the way to my hands. It went away eventually, but as soon as the treatment started, I started having anxiety, so the nurse gave me a dose of Ativan to calm me. Taking that pill was another nightmare on its own. I don’t remember much about that day, but my husband and sister both said that I was out cold most of the day and that I was confused. My husband tells me that I pointed to my feet and called them scissors and that I tried pushing him, my brother-in-law and the nurse to get in the bathroom.
On another date while I was getting treatment, I was trying to tell my nurse something, but the words wouldn’t come out. She rushed to get my doctor and I still couldn’t manage to get the words out. Next thing I knew, I had about 10 people consisting of nurses and doctors in my room. Somehow I was able to type in the words on my phone, but I was unable to speak. I tried my best to speak and eventually managed to say my name ever so slowly.
It was then that they decided I had to go to ICU and they inserted urinary catheter in my groin. Again, it was tremendously painful and by this point I now had 3 catheters – one in my chest (they had moved the catheter from my neck to my chest) and another one in my arm. What made it even more dreadful was that neither my husband nor my family were allowed to stay the night with me. I was in so much pain, I begged the doctors to have the catheter taken out because I couldn’t move, but they wouldn’t take it out and just offered me a sleeping pill to help me through the night. Even with the pill, I was still unable to sleep due to the pain. The following morning, I begged my new nurse to have the catheter taken out and when she did, to my delight, I gave her the biggest hug. I was so grateful to her for putting me out of my misery.
I received all sorts of treatment while in the hospital – plasmapheresis, blood transfusion, phosphate through IV, steroids and of course the rituximab. With the help of rituximab, my platelets started to climb up. I had to get treatment on Christmas Day, but was lucky enough to get a day pass and spend Christmas with my family. I was discharged on December 27th, and in total spent 1 month in the hospital.
Three weeks after being discharged, I started itching a lot and my urine was unusually dark. After some blood tests, I received a call from my doctor saying that my liver enzymes were up again (they were pretty high when I was in the hospital, but they eventually went down) and that I had to go back to the ER at St. Michael’s that night. My liver enzymes kept going up and after a very painful liver biopsy, it was confirmed that I had acquired another autoimmune disease, which affected my liver. I spent another week in the hospital and was sent home, back on steroids once again.
It’s been such a long and difficult journey. I went from being completely healthy and active in the gym to having a hard time walking across the hall from my hospital bed in just a matter of two weeks. I must say that those days when I had to be assisted to walk across the hall and be bathed by my mother and husband were not only the lowest point of my life, but also the most humbling. Although dealing with TTP has been the hardest thing I have ever gone through, I do believe that in every difficult situation there lies a hidden blessing. For me, there has been more than one. First and foremost, I’ve been given a second chance at life through God’s grace. Secondly, the tremendous amount of love and support I’ve received from my husband, family and friends were more than I could ever ask or hope for. On top of that, I received such excellent care from the nurses and doctors at St. Michael’s. During my stay, both my husband and I have met a few incredible patients whom I will never forget and who will continue to inspire me. I’ve also had many people, some whom I have never met, praying for my healing. And last but not the least, the unsung heroes, the people whom I will never meet, who have taken the time to donate blood so that they could save my life and many others. I would not be here if it weren’t for those donors and for that I will forever be grateful.
For those who have been diagnosed with TTP, as another patient said in their shared experience, don’t be discouraged and think that your life is over. In moments of despair, remember all the things you have to live for and fight as hard as you can. Stay strong and take comfort in knowing that overcoming this battle will only make you a stronger person. Always remember that you are not alone and that many others have experienced or are continuing to experience your pain and that we’re all in this together.