After doing these blog posts for so long I find myself very aware that being alive is a gift that I must enjoy each and every day regardless of what I am doing...
It is amazing the stories I am able read from clot survivors by simply asking about their clotting episode... I AM VERY THANKFUL that these stories are being shared as they are very powerful for the reader as well as for the writer...
ROBERT CASTRO is a clot survivor who purchased his CLOT BUSTER #StopTheClot polka-dots shirt and as a result he received my noisy questioner that he willingly shared with me and now I am sharing with you thanks to his willingness...
No doubt that Robert will put his polka-dots to good use while CELEBRATING that he is alive and spreading the word about blood clots and blood clotting disorders.
Read on and get inspired...!
"Yes, I am a survivor. I was diagnosed with a DVT and multiple PEs August 12 of 2014. The symptoms all started seven days earlier when I thought I had a pulled calf muscle from cycling. I had just gone out for 35 mile bike ride I was stung by something in my left ankle and it was so painful I got off my bike and applied my frozen water bottle to my ankle. After about 10 minutes, I started to ride back home in pain. It had crossed my mind that this incident could have caused my blood clots but this has been dismissed by the doctors. The next day, Sunday, I went out for a 27 mile bike ride and I still had some pain and discomfort from that sting.
Bill Flaws - photos.run |
The night before my visit I ended up burping a lot just before going to sleep. Each burp caused a little bit of pain in my lungs. I didn't think much of it. The next day, August 12th, I decided to stay home and work before my appointment at 1 pm. As the morning went along I knew something was wrong. My lungs started to hurt. In 2012, I was lucky enough to have experienced pneumonia but It wasn't at the time. It was the worst pain I had experienced in my life. Leaning on that experience I was now able to determine something was really wrong with me. While on a conference call with the office I hardly spoke and my coworkers knew something was really wrong.
The CEO, Mike, called me after wards and told me he was driving the 30 minutes to pick me up and bring me to doctor. I was early to the appointment but when I finally saw the doctor I told him about the sting, the calf, and how my lungs felt. He ordered the x-rays and saw nothing in my lungs. He then sent me to the local hospital to do an ultrasound of my leg. Mike drove me to the hospital and they performed an ultra sound. When the tech came out he informed me that I had a blood clot in my leg and that I needed to be admitted to the ER. At that moment I didn't know anything about blood clots except that people die from them. I was entering my new world... I was brought down to ER and they performed a CT scan of my lungs and that is when they found multiple PEs. After wards I was admitted to the Hospital and as they pushed me into Hospital room a lady was sitting in the corner. At first I thought she was with the Hospital and then I realized it was my mom's best friend. My mom had told her I was at the hospital but my mom didn't know the state of my condition and with my parent's living out of state she showed up. It was nice to see a familiar face.
I would remain in the hospital for next three days. On the second day they were going to release me and an hour before my brother was supposed to pick me up my temperature rose unexpectedly. I wasn't leaving and I felt relieved. I stayed for another day.
While at the hospital the doctors that I saw asked me several questions, family history, traveling, injury etc... They performed several tests and could not determine why I developed clot. All they could tell me was that it was an "unprovoked" episode. The night before I was supposed to be released the nurse walked in and told me that I would need to learn how to give myself shots of Lovenox in my stomach. I have always had to look away when I received shots and the thought of giving myself shots was terrifying. She said if I didn't learn to do it that evening that the morning nurse would make sure that I did. She then stepped out for several minutes. I was terrified. As I waited for her to return logic took over and I realized that I had to do it. I live by myself who else would give my shots and if I didn't give myself shots I could die. The thought of dying gave me the will to move forward. When she returned I gave myself my first shot. About a week later and a little bit more energy I started working from home again.
Once I came home I started trying to answer the question, "why". It became my obsession to find the answer. I had many theories and I passed them onto my Hematologist and even a family friend who is also a Hematologist. In my research I found a cyclist who had a clot but my doctor explained to me based off the information I provided why this cyclist had his clot. It was not same. I remembered that professional cyclist, Chris Horner, was sidelined several years ago because of blood clots. So I looked into his background checked his twitter account and website. I was a big fan of his and eventually his name lead me to your blog. It was refreshing to read the stories you shared.
Researching as much as I could I never stopped asking my doctors and pharmacists questions. About a year later I just ran out of questions to ask them. Now I ask them about the status of the antidotes for drugs like Eliqious. I was never able to find the answer to my "why" and I am now okay with that.
About a month after my diagnosis I went walking with my father. We didn't get very far probably less than a quarter of mile. I still remember turning around, it is was one of those moments that is etched in my head. I wanted to keep walking but my body couldn't. My thoughts were to walk again but also to go cycling again. I wanted to get back on my bike and my Hematologist encouraged me to do so. It wasn't until November that I was able to get back on my bike. In my first ride I put my bike in the car and headed to the trail. I had always rode there but I knew I wouldn't make it and I wanted to take it really easy. The constant pain in my lungs was still there but I went for about four or five miles. Gone were the days of riding 35 to 40 miles. I started increasing my distance when I felt I could. I let my body tell me what I could do and I never tried to push it.
That December I went to visit my parents for a month. I was really excited to be able to ride in warm weather and on my first ride I crashed and fell hard on my hands. The front tire got caught on even surface. I saw a hand specialist and knew I wouldn't be riding for several weeks. When I returned home in January I went to the Anticoagulant clinic the very next day. My INR levels had dropped below 2. That night I didn't sleep well. There was some discomfort in my leg again. I went to the office and something told me I had to go back to the ER. I cried not knowing what was next. I had been looking forward for my six month evaluation and this put a damper into it. They did another ultra sound and couldn't determine if I had a new clot or if it was the existing clot. The doctors suggested that I should raise my target INR level between 2.5 and 3.0.
I finally saw my PCP in February of 2015. We looked at my hands and we talked about my clots. The hand pain eventually subsided in April. That spring my coworkers noticed a change in my behavior. I was no longer myself. I just didn't care and I was hardly sleeping. I knew something was really wrong again. After speaking with my Doctor's office they said I should go back to the ER. I arrived at the ER and they started evaluating me. I was very lucky, it turned out that I had allergies. They gave me an antihistamine and my life quickly changed. I was able to sleep again. I thought this whole time that the reason I felt the way I did was due to the clots and that it was my new normal. Eventually I would find out that I'm allergic to all the grasses, some weeds, dust mites and cockroaches. I believe that with my weakened immune symptoms I developed these allergies. After nine months I knew there was finally hope and I couldn't believe how good I felt.
I set my hope towards finishing a two mile run in July for the local Independence day festivities. I had run the 5k back in 2012 with a different brother. I used to be an avid runner. I ran track and cross country in high school and continued to run through most of my twenties. I stopped running because of some injuries and eventually took up cycling instead, I thought it would be easier on my body. I was already watching the Tour de France every year because of Lance Armstrong and in 2010. I bought a bike. I started walking and jogging trying to prepare myself for the July race. When the Race day came I told myself that I would not walk and that I would finish the race. At mile 1.25 I felt some discomfort in my right knee. I ignored the pain and slowed down a little and eventually finished the race. I had done it! To my surprise when they announced the winners I ended up finishing second in my age group with a time of 18+ minutes. Turns out there were only three of us in the 30-39 age group but that didn't matter, I felt that I was the winner. This year I ran the same race again and again without any real preparation, just my cycling conditioning, I knew I wasn't going to be able to do the 5K so I stuck with the 2 miles. I finished in a time of 16:50. I didn't get second but fifth this time. Apparently there is more competition with the forty year olds. So now I've decided that I would start seriously running again and I'm looking forward to next year's race. That one will always be special to me. I've already started training and now I'm targeting a 5K in September.
Thanks for asking me about my story. I've never really put it all done on paper but it was also therapeutic."
Robert here is wishing you ALL THE BEST in your upcoming races... YOU CAN DO IT!
NEVER EVER GIVE UP THE HOPE THAT DRIVES YOU... Anything is possible as long as you go at it one step at the time.
Get those polka-dots out there and CELEBRATE being ALIVE as it is truly a gift!!!
Thanks for reading,
The Clot Buster
Rob -- It is good that you are back to cycling and being "Rob" again. I remember the situation well, but forgot some of the details. A key message for people reading your story is to get things checked out. I remember that you were here in the office and we were debating about the sting and type of insect and it was something different all along.
ReplyDeleteI look forward to biking with you next summer....as long as you slow down for me.
Mike