I have learned so much being in this clinical trial. The most important thing was that patience and persistence were key. It is true that in life we come across times that we feel in limbo, life going nowhere. Waiting for acceptance into a trial is and has been one of the biggest lessons in patience for myself.
The first week was met with several visits in the office for blood draws and monitoring. After a month the visits became less frequent and then I was going in only 1 time a month. Each time we would do weight, blood pressure/vital signs, temperature and blood draws before meeting with my clinical nurse Andréa. I found that with each visit the bond of friendship being formed with each person in that office.
I would be surrounded with other people in the waiting room and in the lab area however, I never knew who was in there for HEP C or not. This facility conducted a vast amount of various trials for any health condition.
I found myself looking deep into that person to see if I saw any signs of connection to hep c. Funny I say this as I too fell for the looking on the outside to see symptoms which we all know really are none. I yearned for that personal connection with someone who understood my daily fight. Sure I had my family, a awesome team but what I needed most during this was another person to say... “I get you Kim”, “I understand”.
About several months into my trial I was asked to do several TV interviews, a PBS Newshour show and be on the Second Opinion show along with a documentary with Health Central to share my personal story and journey with Hep C. It was during the taping of the PMS newhour show that I for the first time got to meet in person a fellow trial patient. I was beyond exastict. Finally meeting in person someone who could really relate MY FEELINGS, the uncertainty, the fear, the joy of being undetected, the pain, the riba rage. This lady and I hugged no words just by the look in each other’s eyes we connected.
From that point of my trial journey I felt more confident, more secure just knowing there really was someone else who truly understood me even if we didn’t get to talk the fact I knew she too was going through the same adventure.
My personal experience being on this trial for 48 weeks overall was very positive. I was blessed with minimal side effects and knowing I was undetected my first week made the journey smooth. I learned early the side effects of Ribaviran (riba rage, fatigue) were manageable. I took naps, I recognized when I felt irritations coming on that could cause a meltdown, I would say to myself “time out time”. And I literally would place myself in timeout. Closing my bedroom door and letting my children know that mommy needs time out. I explained that they are not to open the door till I come out for I can’t control what this feeling does and I did not want them to get the brunt of my medication side effects.
With any treatment, I feel if you can learn to recognize symptoms and take action you can prevent major issues happening by just removing yourself and giving yourself permission to rest and calm down.
My last day of trial was met with excitement and sadness. I was happy to be done and be hep c free but this also meant that I would no longer be seeing my clinical nurse now friend or the whole team I came to love.
Since then I have been SVR for over a year. I have witnessed this clinical nurse leave the hep c realm of treatments to go on to helping those with Ebola. She has and will forever be a part of my hep c journey. To my whole team… thank you and I am forever blessed our paths crossed. Thank you for leading me to a healthier life now free of hep c.
If you are thinking or wondering if you should participate in a clinical trial, I would suggest you contact your local center for research and ask for information. I can’t lead anyone to trials but I can say that it was a positive experience for me and has given me a second chance of life.