Ron Hanis

Husband, Supporter

Life was normal, life was good, life was moving along, Beatrix Angela and I had enjoyed a pretty good year up to late October. We attended many family functions throughout the year, these were always good times, family was so important to her. We were going to just hang around home and do a little home renovation that summer, but at the last minute she suggested, let's go to Calgary for a few days and then go to Vancouver for a week. A few days later all arrangements were made. July was beautiful weather wise, at least it followed us everywhere we went. Calgary was a very good time, The Zoo, Heritage Park, cruising around in our Mustang rental, and time with family there was very special. We had such a good time, we planned to go back this year and take in all that we missed. Vancouver is always good times, family and fun, we got to play our first round of golf on a beautiful mountain course.  Many firsts that ended up being lasts. Everything seemed normal to our eyes, except for the fact Beatrix was complaining that she was getting lots of wrinkles on her face, everything was normal. I would just tell her, well you are getting older dear, it’s natural. Back in Winnipeg and back to work, Trix was a real spark plug; she worked hard and was very fast paced in her approach to her job. So for her to come home exhausted was not out of the norm, but I started hearing her say "I am so Tired" alot more often.

August & September went by like normal, lots of birthdays and a few more family gatherings. October brought the usual fall activities, getting ready for the cold weather and putting all the yard things away. October 9 2010 was Thanksgiving, so we had our last holiday gathering together, I was so fortunate to be taking some video on the video cam, it would be the last video her, one month to the day she passed.

Not long after this Trix started to notice very small little bruises on her one leg, she mentioned it to me and she just figured that she had been bumping into things at work. I bought into that reasoning, but they didn't seem to be going away. My biggest regret is that we didn't go to the hospital sooner. She started getting bruising on her arms and they got big fast, I started getting scared as was Trixie, She phoned me at work and said she wasn't feeling well and that she was feeling dizzy. After I came home from work, I said we are going to the Hospital in the morning. That night she was very still and cold, I was having major anxiety wondering, what was happening to my sweetheart. I look back still shaking my head about it all, if we had reacted a bit sooner maybe the outcome would have been different. We got up early and got ourselves ready, Beatrix was very sluggish, and very emotional, she was scared. I turned the handle on the door and opened it for her, little did I know that it would be the last time she would ever walk through that door.

We made our way to the Grace Hospital Emergency in Winnipeg. It didn't take too long for the triage nurse to have her admitted. They gave us a room, and a nurse was in fairly quickly to do tests and blood work. I remember that the room was cold and Beatrix was shivering under the blankets she had. I took off my leather jacket and covered her with it, which helped a bit. The nurse came back and took more blood from her, 5 times if memory serves me. The last time the nurse took blood from her I broke down crying. To see your sweetheart laying there cold and scared was at the time more than I was able to handle. A few hours into our stay a doctor had come in and explained the situation to us. I didn't have a clue what he was saying other than, Beatrix had some type of blood issue and it was best served if she was transferred to HSC Hospital in Winnipeg. They offered to transfer her, or we could just go ourselves, which is what we did.

We were both starving, so we quickly stopped at a fast food restaurant, got some food via the drive through and sat in the parking lot eating and talking. This would end up being the last meal we ever eat together. We made our way to HSC and parked the car, finding the emergency section, we submitted the paperwork that was given us and we proceeded to wait. Time passed and we were eventually called and placed in a small room where a couple of  Doctors who were specialists in blood disorders came in and laid it all out on the table for us. They were very blunt and to the point. The older doctor said you have "Thrombotic Thrombocytopenic Purpura" or TTP, we just looked at each other and then back at him and said, "What", What is that, never heard of that! He went on to explain TTP in terms that were for the most part way over my understanding. The words "it can be fatal" were all we needed to hear. When do we start the treatments and where do we sign was our collective mindset. We got all the particulars out of the way and were give a room to setup in.

Plasmapheresis treatments were to begin in the morning, so it was about midnight when a surgeon came into the room and explained what his role was to be and the steps he needed to take in preparing her for the treatments. He had to perform an operation of inserting the catheter in her neck. I recall her writhing in pain as he was performing this, my heart was shattering. This was all brand new emotional territory for us, I was trying to stay and look strong for her, and I think she was trying her best to look strong for me. It still haunts me to this day, when I try to imagine what she must have been feeling inside. It had been such a long day and I still don't recall if either of us got any sleep that night. Morning arrived and the day staff made themselves known to us. Breakfast was served to Beatrix and then she had to drink a large amount of some fluid that was said to be necessary to do a proper scan. I still wonder about that, because when we got down to the room where she was to have the body scan, she was cold and shivering, even with lots of hot blankets on her. She threw up everything she had consumed and drank, but they did the scan anyway. It's hard to know what's necessary or not when you just don't fully understand what is going on.

All I can say for sure is that my sweetheart was scanned and tested for a whole host of things over the course of the next few days. This whole situation was taking a toll on her, the Plasmapheresis treatments were as I perceived, really kicking her. The results of the treatments were never as good as the nurses were hoping for, but they were always optimistic and left me feeling the same. That poor girl was so tired, all she wanted to do was sleep. After only 2 days of single treatments they decided to go to 2 treatments a day. She was so tired, it was all she could do at this point to just whisper a few words. This was the day our sister in-law and niece came to visit, bringing her new born with her. This was the last time I ever saw her smile, it still tears me up inside.

The treatments continued with much the same result, her levels would come up but they would not hold, at least up to this point in time. They had spoke of another lady who was down the hall who had received 6 treatments and was stabilized and released. I presumed it was true, no way to verify, but I knew already that 6 treatments were not going to work in our situation. Beatrix would receive 13 treatments in total. It was a Friday and in the process of getting her first treatment of day 4 in the hospital, she had what I will call a massive seizure. The nurse was doing the Plasmapheresis treatment and I was on the other side of her bed talking to her and looking in her eyes. She started to raise her one arm up and turn her wrist like she was looking for her watch to see what time it was. She did this 4 times, and I said to her, "don't worry dear about the time, I phoned work and told them you weren't coming in today." She was always concerned about work and never being late. It was at that moment that she started to convulse violently. The nurse yelled out some kind of code word and people were coming out of the wood work to help. Someone grabbed me and took me out of the room, I was in a state of shock. To see that happen to the one you love takes you to places emotionally you have never been. They eventually got her stabilized and she was then transferred to the MICU ward.

In short, she spent the next 5 days in MICU getting her treatments and the best care humanly possible. The results were much the same as before, always up and the down. I was getting pretty good at studying the nurses faces, looking for the expressions I was fearing. In conversation with the doctor, he had told me that she had at some point suffered from a stroke. The scans showed evidence of it, and he did show me what I will call, x-ray scans. 2 black area's on the lower back of the brain. At least this is what I recall, because of the state you are in, some details are fuzzy.

Nov 09 2010, early evening I was down in the hospital food court having a bite to eat. I went back up to MICU and they let me in, as I walked towards the section she was in I could see that she was breathing extremely fast and that there was a few extra nurses at her bedside. The nurse in charge of Beatrix's care took me aside and said she had just had another seizure and I was to leave until they could get her stabilized again. I waited in the lounge area with some family for about an hour, so we went for a quick coffee. On the way back up to the lounge area I heard my name being paged to the family room in MICU. I knew what that meant, my mind was gone at this point, I was in shock.

I came in and was immediately escorted into the family room where a doctor sat me down and explained the Beatrix had suffered a massive heart attack and had flat lined for  2 and a half minutes. He went on to explain that they had brought her back, but things were extremely serious and the potential of death was very high. No sooner did the words come out of his mouth, when Beatrix went into cardiac arrest a second time. They brought me to the edge of her room after I requested it. What I witnessed will forever be branded in my mind. So many people using every ounce of their skills to try and save my beloved Beatrix. I heard a doctor cry out "Time Please" and I felt my soul hit the floor. I knew what that meant. Everyone but her nurse cleared the room and I was left to say goodbye to the Love of my life, My Soul mate, My Everything.

I held her hand and rubbed my fingers through her hair and whispered in her ear, "it's ok to go dear, don't hold on".  I also told her that "I will love you till the end of time" My tears were falling on her face, I closed her eyes for her. I spent time alone with her talking and praying over her and some time with family and the house Chaplin. In absolute shock, there is no other word. After a while I covered her face and blew her a kiss and then turned and with all my strength walked out of that room. I signed off on some paperwork, I still don't know what I signed, doesn't matter I guess. The whole family gathered in the lounge and comforted each other as best as we could. We left the hospital. Over the course of the next week all funeral proceedings were handled, and family and friends went home and I was left alone in our home to begin a journey I had made no preparation for. It's been a year of stress and anxiety, multiple counseling sessions, so much confusion and pain. I am not and nor will I ever be the same person I once was, life is a challenge, life is precious, life is a mystery. I was trying my best to live as normally as possible, to continue my routines, but constantly feeling like glass half full. The better half of me was gone, the half that filled me with love and compassion, with so much joy. A future full of pain from loss, cold memories, death is waste I would say. Time heals all they say, well it smoothens out the sharp edges anyway, I'll buy into that much.

I was on the internet doing some reading on "Thrombotic Thrombocytopenic Purpura". I was trying to get a little bit better understanding of this Monster that took my sweetheart. I still haven't read that much about it, the sting is still very present today. It will take some time before I can really feel comfortable with all that happened to sit down and get to know this disorder and what it has done to me and to all who loved Beatrix. In my search I came across the website. The graphics on the page grabbed my attention for some reason. I was reading about the up and coming walk and thought, Hey that's cool. This was something I could do to honor the memory of my sweetheart. I put the page in my favorites and left it at that. Life went on as normally as it could and I never thought much about the walk or the webpage I had saved. I just want to forget about TTP and what it had done to us. There was this little tiny undetectable spark in my heart I guess, because as the date for the walk was getting closer, that spark was getting hotter. I made a promise to my sweetheart that I would do the walk and try to make a tiny bit of difference so hopefully someday, someone would not go through what she went through. I registered for the walk and through word of mouth and social networking I manage to get a few people who could commit to walk with me this year, and some others who said they will next year. In the short time frame we had, we managed to raise a bit of money, but more importantly we managed to inform a lot of people of a disorder that almost all people had never heard of. Slowly and with the efforts of many, we as a community of people who have been struck by this disorder called TTP will have an impact.

TTP, This is what you did to Me!


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.