Dazed and confused – that is my short explanation of what my first TTP experience was like – following is the long version.
My name is Lisa Rogers and in 2007 I was 47, a recent widow, and my company was in the process of moving facilities. As a result, we were packing up our office which involved a lot of moving and lifting– a lot of physical activity. That is why I ignored the bruises, lack of concentration, listlessness and utter exhaustion I had been feeling – I thought it was from all the extra work on top of depression from the grieving process. Then one Sunday I stopped to visit my parents on the way home from church, and in the middle of a conversation I was suddenly unable to talk. Yes I made sound but it was complete gibberish – no understandable words come out. I also lost some coordination abilities – I kept attempting to screw the lid on my coke bottle but was unable to. Everyone assumed I was having a stroke and I was rushed off to the hospital. Later I would learn while I thought at the time I knew everything that was going on – I seemed to have missed some of the activity around me – I obviously wasn’t as alert as I believed. It didn’t take them long at the hospital to discover my red cell and platelet counts were extremely low. (Platelets were 12k) So I was admitted, given a lot of blood, plasma and had a slew of test done. They kept coming in and telling me what I didn’t have. Finally after a week of finding out I did not have Lupus, Rheumatoid Arthritis, Leukemia and who knows what other conditions and diseases – it was decided I had had a TIA and my counts were up enough to go home while they finished processing some of the test to figure out why my blood levels had gotten so low.
After being home a couple of days I noticed a strange rash on both of my legs from the knee down but thought maybe it was a reaction from all of the drugs and blood I had been given. A few days later I was sitting on my couch watching a movie when half of my face went numb. It seemed to start at my lips and spread over that side of my face quickly – then it was in my neck and shoulders and arm. It was like someone had drawn a line right down the middle of me and everything on one side was fine but the other side was all numb and tingly like your foot gets if you sit on it too long. My children quickly helped me get to the hospital. By the time we got there my chest had begun hurting and I was short of breath. This time my platelets were down to 8k, I had enzymes that indicated a heart attack and now less than a week later I was back in the hospital. Luckily the test results were in from the week before, and I had TTP (Thrombotic Thrombocytopenic Purpura). Next started the days of plasma exchange and steroids. The hospital I was at did not have the correct equipment; a portable unit and with specialized nurses were brought in to do the apheresis. I had multiple heart tests and it was decided I did not actually have a heart attack – but that my blood count was so low it was putting an enormous strain on my heart – thus it had produced the enzymes. I will not tell you the apheresis hurt – it did not – but I hated it! Hours of just lying there not moving, the odd humming feeling in your body of the fluids going in and out, the tingling when your calcium goes too low and the COLD! The portable unit did not have a warmer on it so unit after unit of FFP (fresh frozen plasma) going into your system makes you feel like you are visiting the North Pole in your skivvies. Despite the nurses piling warmed blankets on me until just my eyes and nose peeked out, I would be shivering and my teeth chattering. It seemed like about the time I would finally warm up it was time to start again. It was miserable – but luckily my nurses were all amazing and kept me cheered and engaged through the process. I felt something like a science experiment. Here I was with a disease none of them knew much of anything about. I had tubes and wires attached everywhere. I was hooked to a strange machine they had to bring in from a larger hospital downtown, and everyone came to look at me. I mean everyone - doctors, nurses, interns, the guy who sold popcorn in the lobby. No one had seen a TTP patient before – few had seen a patient with that low of platelets – and on top of all that I was lucid and talking. One of my doctors whispered to me when a group came through sightseeing “you should act sicker – they aren’t expecting you to be sitting up and joking around”.
After a couple of weeks of plasma exchange my counts were finally up and holding and I was released to go home. I went back to work and really struggled especially those first few months back. I could not remember passwords or even how to log on to my computer. I normally spend about 90% of my work day on the computer – so that was like not remembering how to switch on a light. It was hard but thankfully I had been at my company for many years so they were very understanding with me as I struggled to get back on my feet. I have had only one relapse – that was in 2011. That time they transferred me to the larger hospital downtown instead of bringing in equipment and personnel. It has been 6 years since my last episode but I still get a bit nervous when I have bruises or any kind of rash. I had to have my gallbladder removed, struggle with anemia, have developed asthma, an irregular heartbeat and chronic diarrhea – do they have anything to do with TTP? No one knows. I continue to have trouble with my memory, concentration and energy. I forget names and struggle for certain words, or forget how to do simple things – but luckily enough, I usually re-remember in a day or two – strange, I know – but I think that is just part of life post TTP. I am grateful God got me through one of the worst periods of my life and He continues to strengthen and encourage me daily. I pray for awareness - I pray they will find what causes this disease - I pray they will find better treatment - I pray for a cure.