In August of 2000, I was a stay at home mother with a 3 and 1 year old. My symptoms were something that I had never felt before. My stomach hurt so much and I didn’t feel like eating anything. In fact, I think about 3 days went by where I basically ate very little. On the Monday of this fateful week, I noticed that the whites of my eyes were very yellow, my doctor was convinced that I had gall stones, because that was one of the symptoms. I was also scheduled to have a cat scan to rule out any neurological issues.
My daughter was still drinking formula at that time and I vividly remember walking around many grocery stores trying to find the brand that she drinks and remembering that it was very difficult to catch my breath when just walking a few feet. So an errand that would usually take a few minutes took hours because I always had to stop and catch my breath every few feet. Tuesday I had an appointment for blood tests, and little did I know that the lab technician saw something was off with my blood and passed it on to her boss, who was a hematologist (you will see the importance of this a little late on in my story). On Wednesday I went to get an ultrasound to confirm that I had gall stones, and my 3 year old son was with me at that appointment. After the appointment I asked the technician if she saw any gall stones, she said “no, but the doctor will confirm with you”. I was thinking: if it’s not gallstones what is it?
At that time, my 1 year old daughter was staying with my parents because it was just too difficult to take care of her while feeling so sick. After the ultrasound was done, I noticed that I could not button my shirt, in fact I couldn’t do anything, and suddenly the whole world became unknown to me. My head felt like someone was hitting it with a sledgehammer and then the confusion started. My beautiful 3 year old son was just there with me never leaving my side. After many minutes of trying to figure out how to put my clothes back on I finally made my way out to the reception where I proceeded to tell the receptionist that I was not feeling well. It wasn’t until I noticed the look on the receptionist face that the words coming out of my mouth was pure gibberish. She asked if I wanted to go to the emergency room, but I said no, not sure why I did. So I just sat there until the feeling wore off and I called my husband and told him what happened. The rest of the day I was at my parents’ house resting because that episode just drained me.
On the Thursday it was more of the same tiredness, my eyes were still yellow and I could not eat anything. Maybe I should go back a few weeks and say that the weeks leading up this week I used to have these headaches that would wake me up in the middle of the night screaming and there was nothing that my doctor gave me that would stop that pain, I believe that was the beginning of TTP.
Well, Friday came and what a day that was. It was me and my son at home that morning; my husband had already gone to work. Taking a shower was such a difficult thing to do. It took me a good 45 minutes to shower because I was unable to catch my breath after every movement that I made. I decided to try to eat something, and that didn’t go well as the “Special K” cereal tasted like nothing I had never tasted before. I got my son his breakfast and decided to watch some TV while he ate his cereal. My husband called to see how I was doing and I told him about the shower episode and he said he would come home at lunch to check on me. Later when I walked to the kitchen I noticed that my left side of my body was dragging, and then finally something clicked that this wasn’t right. I came back to the couch and proceeded to call my husband but I could not remember his number, neither could I remember what he did for a living so I could not look him up in the phone book. So I just sat there hoping and praying that someone would call me so I could tell them something is wrong. Not sure how much time passed, but my husband finally called but unfortunately the only thing that my brain would allow me to say at that time was: yes. Every question that he asked me I said yes, but not every question was supposed to be a yes. So my husband asked me to put my 3 year old son on the phone so he could tell him to open the door because he is going to call 911.
Everything was a bit of a blur after this, I just remember being in the emergency room and feeling numbness in my legs having to go to the bathroom and then coming back and not feeling anything in my legs. Earlier I told you how my blood tests being passed on the hematologist was going to play an important role, this is it. After being there for a while, I am not sure again how much time passed but I do recall that TTP was finally my diagnosis and that was because of Dr. Cunningham who had determined by my blood, which was taken on Tuesday that TTP was what I had. When my blood was taken at the ER it was at 5000.
I was taken up to ICU, and honestly, the next 24 hours I can only tell you because my husband related it to me. There was not too much familiarity with TTP so the doctors were trying to figure out the best treatment for me. There was a time in the early morning hours that my husband asked the doctors if he should bring our kids to come and say goodbye to their mother…wow, that was hard to type. At some point, a nurse approached my husband and told him or recommended to him to a local doctor that was aware of doctors that deal specifically with TTP at Johns Hopkins Hospital. Contact was made and it was then arranged that I would take the air ambulance to Johns Hopkins.
Saturday was a busy day in the ICU, I had many visitors coming in and out I would assume that they thought I was going to not make it. Some were crying and some just came in not saying too much, but my church family was there for us, and I will never forget what they did for my family during this very difficult time. At some point during the day the plasmapheresis started, boy was that fun. But then I used it all and it was time to head on over to JHH.
For the next 6 weeks I received excellent treatment at Johns Hopkins from the 2 doctors there. I had 26 days straight of plasmapheresis, some of which in the beginning was frozen, and that was a feeling that I would never forget. Eventually I was able to be moved to another bed so I would go to a special room where I had the treatment with other TTP patients. My husband spent the first 2 weeks with me never leaving my side. My sister came and spent 4 weeks helping my Mum who spent the entire time there caring for my children.
Almost 18 years later and I have not had a relapse of TTP, my children are now 21 and 19 and I am no grateful that I was able to see them grown up. I still believe TTP is an unknown disease, when I talk about it people look at me in total confusion, it needs to be put out there as well as more education about this near fatal disease.