Pam Smith

Patient, Answering TTP Foundation (Volunteer)

My name is Pam Smith; I am a 67 year old wife, mother of 5, grandmother of 14 and great-grandmother of 3. I live in Johnstons River, Prince Edward Island and this is my story of being a TTP survivor.

In October 2002 I was told that I had “Breast Cancer”. I was feeling fine and my husband and I had just started to travel. It came as a huge shock. It took awhile to come to terms with the idea that I might die. No one in my family had suffered from cancer. I had a mastectomy and was put on “Tomoxafin” but had so many side effects that I decided I would rather live for a year as myself rather than 5 years as the person the drug was turning me into. I am still Cancer free but have been visited by this strange blood disease that I have never heard of before. The doctors don’t know how a person contacts it or really how to get rid of it. There are just ways of treating it.

In March of 2007, when I was 63, my husband and I were in Charlottetown, Prince Edward Island shopping when I found that I didn’t know how to get out of the car. It seemed odd at the time but we went on and then I found I didn’t know how to close my cell phone. We decided to stop at the hospital and I would get checked out before returning home. Before we reached the hospital my speech became slurred and we thought I was having a stroke. I was unable to speak without my chin quivering and my words were slurred. Everyone thought I was having a stroke but when they took a blood test so they could administer a new drug for stroke victims they discovered my platelet count was very low. It was a struggle for them to get my blood and they took many samples over the next couple of days. Due to the mastectomy I do not allow blood to be taken from my right arm or IV’s or blood pressure to be taken. This meant that by the end of the two days my left arm was very sore and bruised. After two days one of the doctors decided I had a rare blood disease called TTP. Plasmapheresis is the standard treatment, but it cannot be done in Charlottetown so I was rushed to Halifax, Nova Scotia by ambulance. Platelet counts should be between 150,000 and 250,000 mine was at 17,000.

Our whole family was scared and everyone was on the internet gathering as much information on the disease as possible. When I arrived in Halifax the first procedure was to have a line put in my neck so that I could go on the apheresis machine. This is a machine which removes your blood from one tube in your neck spins it around removing the old plasma and replacing it with new. While in Halifax I was on the apheresis machine everyday for 10 days and then every second day and then every third day for about 5 weeks. I used about 150 bags of plasma. My veins were still giving everyone a lot of problems so I had lots of bruising on my left arm. I also suffered many types of reactions to the plasma treatments, so I was given a number of medications to help counteract the reactions. I used to tease the staff and tell them they just wanted to knock me out so I wouldn’t bother them while taking the treatments.  

Finally everything seemed to be back to normal. I returned to Prince Edward Island and had blood tests every week for about 6 weeks then once a month for a year. I thought I was cured and put it all behind me. I seriously felt I had a lot of people to thank for their plasma donations, and put a thank you in our Church bulletin. I thanked everyone I knew and helped out with a Blood Donor awards night at our local Blood Bank.

For four years I was fine, lived a normal and happy life. Then in June of 2011, my husband and I were busy landscaping the front of our home and building an extension on our back deck. One morning I thought I had blood in my urine so I decided to have my blood checked. I spent most of the day at emergency and they found that TTP had returned. This time my count was down to 7,000 so, it was back to Halifax by ambulance and back onto “apheresis treatments”. I received approximately the same number of treatments using another 150 + bags of plasma. I continued to have reactions to the plasma. This time I found I didn’t bounce back the same as the first time. I was more tired and less energy for things I was doing before. After a month I was well again and able to return home to PEI. The doctor in Halifax wanted me to have three vaccine shots in case I would need my spleen removed in the future. This is not a cure but helps in some cases of TTP.

When I returned home my blood was checked every week for a month and then every month. Everything went well until I had my first vaccine in late September 2011, and for a week I didn’t feel well. I thought it was the effects of the vaccine but eventually I went to have my blood checked and there it was again, TTP returned. This time my count was down to 4,000.  Back again to Halifax by ambulance and back to “apheresis treatments”. This time there were a lot of ups and downs and the doctor decided I would need to do something different. His choice was for me to take a new drug called “Rituximab”. My family and I read a lot about the drug and also about the splenectomy and didn’t like the idea of either.

In Halifax everyone who took care of me suggested that I take the drug. I had great care givers and decided I would trust them. When I finished treatments I returned to Charlottetown where my blood was monitored twice week, I also had the last two vaccines and in November 2011 I started the drug Rituximab. I was given this intravenously every Thursday for a month. It was administered in the Cancer Treatment Centre so I could be monitored while receiving it. Even with this drug I suffered a few mild reactions.

On March 8th, 2012, I was able to sit in on a telephone conference with the Answering TTP Foundation’s Toronto Support Group & Info Session.  The session featured a special guest speaker, Dr. Marie Scully, from London England. She spoke about Rituximab and how they use it after the first time a person is treated for TTP. I understand that they have had less returning cases than we have in North America.

As of today I am feeling fine. I get tired more easily than I used to, but of course that could be due to aging. The staff of the apheresis treatment centre in Halifax are all awesome. I have also had very supportive doctors in Halifax and in Charlottetown.

I have a very supportive family. A husband and 5 children, 14 grandchildren and three great-grandchildren who have been there for me every step of the way. My husband is mostly retired and was able to spend a lot of time with me while I was in Halifax. I also had a good friend who was able to stay at the Lodge with me when my husband couldn’t be in Halifax. Each time I was treated in Halifax I spent about 10 days in the hospital and then was permitted to stay at the Lodge if I had a companion, and then I received my treatments on an outpatient basis until I was finished. Many good friends who kept in constant contact and kept my spirits up through e-mail and phone calls while I was away from my home.

The only real restrictions I see on my life in the future is that I love to travel but since I never know when this disease will return I worry about leaving Canada. I know how expensive this treatment would be outside the country, and I worry if could even get access to it in time to save my life.

Most of the time I do not think about a recurrence but am certainly more aware of any little feelings I have because each time I had TTP it was different. I very rarely bruise and the petechia usually doesn’t show up until I am at the hospital.

Again I would like to thank all those people who donate plasma, the nursing staff of the apheresis centre in Halifax, my friends and most of all my family for all of their support.


Are you interested in submitting your story to support other patients and raise awareness for TTP? For more information on submitting your story click here.

Please get involved today.