My name is Amy Granados and I am 35 years old and I live in Norman Oklahoma (Boomer Sooner!). I am married and have a 16 year old daughter, 7 year old son and a 4 year old daughter. I have been a Legal Secretary/Assistant for around 9 years at a large law firm in Oklahoma City.
At the end of July in 2010 I woke up on a Saturday morning with sever stomach cramps at about 5:00am. After a few trips to the restroom, a large presence of blood was very obvious. That was very frightening to me along with the fact that the pain I was having was no ordinary up-set stomach, stomach virus type of a pain. I got up and took myself to the hospital, which is very close to our house and was not really looked at all the way and sent away with some meds. By that evening I was worse, dehydrated, bleeding a lot more (honestly it was like cups of blood and that was it every time I went to the restroom), and hurting so bad. I went back to the hospital. They were a little more proactive then, they did a few tests, gave me some pain meds, put me on an IV. They Thought I had some type of Colitis because of where I was hurting and I would need to see a specialist for that the following week. I stayed for several hours to get hydrated and get pain meds in my system then was released in the early morning hours. The pain meds kept me asleep for a few hours at home but the next day, Sunday, I was feeling just as bad. Enough that around 4:30 in the afternoon I went back to the hospital for my 3rd visit on Sunday August 1, 2010, walked in, saw the doctor that had helped me the evening before and he just looked at me and said I am going to get you admitted right now.
Everyone seemed to think I had some type of Colitis, but not sure which one. One was treated with Antibiotics, one treated with Steroids and everything was so crazy they couldn’t do all of the testing due to my bleeding. I was in the hospital for 5 days getting worse and worse with a GI doctor thinking he had was right that it was a type of Colitis but not about to treat me. On my 5th day my attending physician noticed my blood tests had made a gradual and then drastic change. He came to my room and said “there might be something different wrong with you than what the GI doctor was thinking and I am calling in a Hematologist right now to look at this.” My platelet count was 41,000/ul, this was at 8:00pm. As they were looking at my blood tests I was moved to PCU and within less than an hour I was told that I was having some kidney function issues and it was because I had TTP. A doctor came in my room and cut a port in my chest and by Friday August 6, 2010 around 9:30pm the Oklahoma Blood Institute was in my room and hooking me up to the Plasmapheresis machine. I didn’t understand everything that was going on at the time, it was such a whirlwind of information and urgent treatment that I just knew it was very serious. The doctor had spoke to my husband and said if I didn’t get this treatment now, I would have complete kidney failure within a few hours.
The next morning I had a visit from Dr. George James that does research on TTP at the University of Oklahoma (Boomer Sooner) and during that visit he gave me and my family members several articles and reading materials to help all of us understand TTP which none of us had ever heard of before. It was hard for me to take a lot of it in, a lot of my time in the hospital is blurry anyway because I guess all of the medications and stress and effects of the TTP.
During my first treatment had extreme anxiety, It was a crazy looking machine, made me feel very funny and I was becoming confused anyway because of the TTP. I received 14 units that first night and a couple units of blood. Over the next 6 days I received another 83 units of plasma and 6 units of blood and after my treatment on that 6th day after having a sever headache the entire day before and that day, my platelet count dropped as low as 14,000 and hemoglobin to 7.6. By the 7th day of treatment I had to sever gran-mal seizures. I was rushed down to get a CT scan and once I finally came too, I had another one in the holding area for the CT Scan. Then next thing I remember was a few days later and I woke up in ICU with machines everywhere, and 2 broken shoulders. I needed surgery on one of them but of course with the TTP I was unable to do so due to bleeding out. I had to just slowly heal.
My doctors were unable to control my blood pressure and pain so I stayed in ICU for a few weeks while still receiving my plasmapheresis treatments. After 10 treatments, 140 units of plasma, 8 units of blood I finally started to show signs of improvement. I had my up and down days after that, but it was good enough to finally stop treatments and be monitored. I stayed on 3 different blood pressure medications and after they were able to control that with oral medications I got to move out of ICU back to PCU and after about 4 days in PCU I was finally about to go home. I had been in the hospital for 24 days.
I missed my kids first day of school, first weeks of school, I didn’t get to see my young children while I was in ICU for a few weeks, I feel that they were really affected by it, especially my son. He was 6 at the time, entering 1st grade and had lots of homework and no mom to help him with it, my husband was doing everything on his own for the kids and stressing about my health, after I had gotten home I had 2 broken shoulders, I hadn’t walked in a month and just not my normal self for months so I feel really guilty that he got put back into Kindergarten after the first 9 weeks were over. He just had too much on his mind, he never acted up, he was just not ready for that with all of the stress at home I think.
Dr. George visited with me several times while I was in the hospital and his TTP study group has a meeting every 4 months. It is amazing how many side effects are caused by TTP. I have short term memory issues, fatigue issues, I had major hair loss several months after treatment, sleep issues etc….at these meetings I realized I am not the only one.
I will say that I have not had a relapse and hope not too. The type that they think I had was possible caused by e-coli but it was never really found in my system. However, with all of the things that happened with my TTP, it was a blessing in disguise. Even though I almost didn’t make it through the TTP, I did and once I was doing follow-up on my shoulders they found that I had a huge gallstone that needed to be removed and was causing some pain. Once they did the pre-op for that surgery and my blood counts were good enough to have surgery around Thanksgiving 2010 they found that I had a tumor on my pancreas. After being sent from specialist to specialist, they found that it was not full on cancer at this point, but all of the cancer markers that they tested for came back indicating it had an 80-90% chance that it would turn into cancer. So at the very end of February 2011 I had a Whipple surgery to remove a portion of my pancreas, my gallbladder, my duodenum etc. I am back at work finally, I have good days and I have bad days but in general my energy, health are not the same as before I got sick a year ago. Things are work are more challenging for me than they use to be, multi-tasking and stress seem to overwhelm me a more but I am hoping that over time they will get better or I will learn to handle it better.
I do know that I am on the road to recovery; I get better week to week. Although some things might be challenging now, even if they stay the same I will learn to accommodate better for those issues as the years go on so that is encouraging to me.
I am one of the lucky ones, although my experience with TTP was very serious, reading how others have to go over it again and again with relapses, I have a lot of gratefulness that I might not be one of those and my hat goes off to those who stay strong and deal with TTP over and over.
“That which does not kill us, makes us stronger!”