Sandra Standley

Patient

My experience with TIP started in April of 2009. My name is Sandra Stanley and I live in Alsip, Illinois. At that time I was 54, I am now 61 years old and I work as an Administrative Assistant.

I wasn't feeling good that morning, but I decided to go to work anyway. Around noon I said ok it is time to go home I feel terrible.  At home I was feeling even worse thinking I have never had the flu like this before. By night time I could not even stand up. Since my Mother lives with me, she and a friend of mine took me to the hospital.

When we arrived there I was brought into the emergency room. I was delirious and could hardly speak. The emergency room doctor took blood and we were told that my platelet count was at 13,000. I had no clue at the time what that was supposed to mean. Now I know where they should be, as we all do.

They immediately placed me in ICU. My Mother was frantic and was trying to find out what was happening to me. The doctors were not sure what was going on. I guess they needed to do some research. I was told the next day that this was a very rare blood disorder known as TIP. My family, especially my sister who is an R.N., immediately starting looking wherever she could to find out more about this disorder.

I was asking myself, how did I get this? ls it hereditary? I was told the only thing that could help was plasma exchange. That is when I was introduced to Plasmapheresis. I received it every day until my platelets started to rise. Laying there for 4 hours or more was not easy, but I wanted to get well. I never thought that something like this would ever happen to me. I had to return to the University of Chicago Hospital after I was discharged where I was treated for a month, every week until I was stable. After all of this I was finally able to return back to work after recovering for six months at home. Boy was that fun!!

Well, lo and behold the ugly monster came back again this year in January 2016. I first went into the hospital with what they thought was a viral infection. I was sent home in three days thinking ok I'll be alright. The very next day I had this terrible pain in my chest and thought I was having a heart attack. My Mother called for an ambulance and I was rushed to the emergency room for the second time in the same week.

After what seemed to be a life time they informed me that my platelets were at 6,000. I said to myself not again. Sure enough TIP was back. I was placed in my room and was sent down to get my catheter inserted for my plasma exchange. Last time it was placed under the skin. This time they had it coming out of my neck. What a pain that was to have it there. I had to make sure I didn't sleep on it or yank it out somehow. I looked like Frankenstein with a bionic screw in my neck. (Photo included) They scheduled me for my plasma exchange immediately the next day and then every day thereafter. My platelets were being stubborn this time so it took almost three weeks before showing improvement. Not only did I have to fight the TIP but my other organs were going haywire. I finally started stabilizing. What was strange is I didn't feel as bad as the first time. My doctor said it was caught much sooner this time.

After I was released I was scheduled to receive my plasma as an outpatient again. I had to go three times a week at the start, but then was tapered off as the count increased. I was the first TIP patient to have this done at Palos Community Hospital. I made history. My hematologist finally informed me that I was in remission again. I was not able to return to work until almost April of this year.

Thank God I was out of the woods again. This was the second time in seven years. Do I have to look forward to another episode of this in seven more? I sure hope not.

I am doing fine now but sometimes I get very tired. Other times I feel like I can't remember things at work that should come easy. Not sure if this is related but it is scary.

I have to give credit to all the nursing staff and doctors. They were great. Being the funny person I am, the staff said they enjoyed taking care of me because of my humor and outgoing personality, which made their day. I would have to say their care helped me get better much faster.

I also want to give a huge thank you to my Mother. If it was not for her by my side I would have never made it through without her love and support.

I will continue to stay strong and to pray for some kind of cure not only for myself, but for all my honorary brothers and sisters out there that have this terrible disorder.

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