My name is Rhonda Keay. I am 47 years old, married and the mother of three amazing children. I live in High Prairie, Alberta, Canada and work at Monahan Ford as a Service Advisor.
A few days prior to what changed my life, I had noticed what I thought might have been a bladder infection. After several trips to the restroom, the presence of blood was very obvious. Deciding I better go to the doctor and get this checked out, I was diagnosed with a bladder infection, given antibiotics and told to go home and rest. I remember that day complaining how tired I was and that I couldn’t wait for the end of the day to go home and crawl into bed.
The evening of Feb13th, 2013, I was not feeling well, so I called my neighbor and co-worker, Marian, who came over to check on me. She then advised me that she was taking me to outpatients. My speech was very slurred and I had fear in my eyes. After the examination was completed by the doctor on call, we were told that I was having an anxiety attack and should go home and rest.
I remember waking up the next morning and texting my supervisor at work that I was not feeling well and I would come into work in the afternoon. I drove my girls to school and came and home went back to bed. I remember waking up at noon and I was unable to speak. I called my workplace as it was the one number I could remember. I was fortunate that it was my co-worker Marian, who had taken me to the hospital the night before, who answered the phone. She recognized my impaired speech and knew I was in distress. She immediately came and took me to emergency department. I remember getting into her car and the rest is a blur.
THE BEGINING OF MY JOURNEY... I don’t remember much from the next two months of my life, other than what my family has shared with me.
I was admitted to High Prairie hospital and my family doctor started to run tests to see if they could figure out what was happening. After an examination and the blood work results coming back, it was time they sent me off to a larger hospital, as they had first thought I was bleeding internally. My blood count (platelets) was at 6 and all my other levels were not normal; I was very weak and lethargic. The High Prairie medical staff ordered an ambulance to transport me to Grande Prairie Hospital, which was a two hour ride.
Upon arrival at the hospital, on February 14th, 2013, the physicians started their examinations and ordered blood work. I then began my first blood transfusion thinking that may perk me up and bring my blood count up to a normal range. The next day, an ultrasound, ECGS and blood work were ordered to see if they could find anything internally that was causing my discomfort. As they wheeled me to the ultrasound room my speech had started to slur again and with the care of great nurses and doctors by my side, I had my first seizure. The doctors, still not really understanding what was happening, decided that it was time they sent me off to the University of Alberta Hospital, in Edmonton. As they made arrangements, they decided to have a family meeting as they thought I might have a rare blood disorder called Thrombotic Thrombocytopenic Purpura (TTP). As the team of physicians came in to talk to my family and I, I became very restless and I was in shock with the news the physicians had just given us. I then had my second seizure. At this point, they put me on life support and airlifted me to the University of Alberta Hospital in Edmonton for further diagnoses and treatment. Upon arrival in Edmonton, I was greeted by a team of physicians and off to ICU I went for my first plasma apheresis.
On February 16th, 2013, the team of physicians had met with my family to try and answer any questions they had and to come up with a treatment plan, as at this time it was not looking good for me. The physicians then shared that they had diagnosed me with TTP, a rare blood disorder that 1 in 3 million people will get. They told my family I had multiple seizures, had a bleed on the brain, had had a slight heart attack, and my blood count was not normal. A central pic line was inserted into my neck and arm and it was decided they would start regular plasma aphaeresis and blood transfusions to help my blood count improve. They started me on prednisone to also help. These blood treatments involve the replacement of my blood plasma with that of 10 donors during each 3 to 4 hour treatment. I have had 86 Plasmapheresis treatments to battle TTP. This translates to almost 864 gifts from blood from donors. The doctors (still having concerns as my platelets and LDH was not improving, and the fact that I was not responding to treatment at that point) met once again with my family to make a decision to remove my spleen. As I was unable to make that decision myself, they asked my family if they were ready to take the next step. My family was ready to take that risk and put me in the hands of the physicians. My husband signed the papers and off to the operating room I went.
The team of physicians came into the room with the biggest smiles on their faces, updating my family that the splenectomy went very well and I was doing as good as could be expected at this time in the journey.
By February 27th, 2013, routine blood work came back and my numbers are still not where the team of physicians had wanted them to be. A bone marrow study, ECG, MRI, thyroid tests, a thyroid biopsy, and a mammogram were performed. My hematologist, still puzzled, had decided to contact a Specialist from the United States for extra medical advice. The specialist recommended Rituxin every week for 4 weeks and the treatments started. After a few treatments, my numbers where looking up and I started to respond and was able to start physiotherapy, as I had been bedridden for 4 weeks. Much to my surprise, what I remember are the hallucinations, that are still so real to me today - the marching bands that I saw outside my hospital room windows, the skunks on my hospital room walls, the leprechauns that were everywhere daily, the war that was going on.
On March 7th, 2013, my home town of High Prairie, Alberta, Canada held a fundraiser event for me and my family to help out with medical travels, hotels and meals, and any other medical costs. I truly live in an amazing community! With all support from family, friends, and co-workers, everyone rallied together and the event raised over $25,000 for our family. I am truly blessed to live in High Prairie.
By March 26, 2013, I had become an outpatient at the U of A Hospital and was able to come and go from the hospital for daily plasmapheresis treatments and daily checkups.
On April 15, 2013, I was on my way back home.
The support system that our family received in the time of need was amazing: the hot meals that were brought to the hospital; the flowers; the homemade quilts; the prayers; and, the many visitors that drove over 4 hours to visit. To my family that never left my side day and night, I thank you for all your love and words of encouragement. I am truly blessed to have family like you. To the team of physicians and nurses that never gave up on me, I can’t thank you enough.
I am happy to say I have not relapsed and I am now a non-smoker! I thank the Dear Lord each and every day for giving me a second chance in life. To my family that stayed with me night and day so I was never alone to battle this puzzling disorder.....thank you so much.
TTP has changed my life forever; I now realize we can’t take things for granted and have to live each day like it is our last. TTP has made me a stronger person, a more caring person, and I have learned to slow down and understand where my limits lie and that we need to listen to our bodies.
I thank the TTP foundation for all their support and information that is available for TTP patients and their families.
Love you all and High Platelets,
Rhonda Keay