Suffering from multiple conditions, I wasn’t certain I would qualify for clinical trials. At the time, I had no insurance, and my doctor encouraged me to apply. The medical trials provide all of the medical care related to the condition during the trial, if selected, and they even reimburse you for expenses during the trial–up to and including lunch reimbursement on days you have to show up to the hospital. The downside: even if get selected, depending on the trial, there’s no guarantee of treatment.
Multiple Medical Conditions
For me, I suffer from Chronic Thromboembolic Pulmonary Hypertension (CTEPH) and Congestive Heart Failure (CHF), but my heart failure is a unique type, due to the CTEPH. Where most people suffer from right-sided heart failure, I have diastolic, or left-sided, heart failure. In my case, my heart is strong but is not resting between beats, which causes the blood to pool into the heart, not pushing enough blood out into the lungs for oxygenation. We were not optimistic I’d get selected for a medical or clinical trial, because I had so many different conditions, but we continued to apply.
The majority of clinical trials I found were managed by pharmaceutical companies who were looking to test the efficacy of a particular new drug or the use of an old drug for a new purpose. Most, I didn’t qualify for, because of the ‘concomitant conditions’. In other words, they didn’t want to take a chance on my multiple health conditions affecting the outcome of their trial.
I applied for medical trials that were part of a procedural treatment, such as getting a minor surgery or having something implanted. I was scheduled for an IVC filter insertion, and I tried to apply for a trial to get an experimental IVC filter. I figured that, this way, I’d get the filter and they’d pay the cost. I was declined for this one and had to go ahead with normal IVC insertion.
But we finally did find a trial that I qualified for. Instead of a medication treatment, this trial included things like testing how well mechanical assisted devices helped patients with day-to-day living, such as walkers, canes, lift chairs, etc.
CPAP Testing and Efficacy on CHF
So the trial I finally qualified for was testing the efficacy of CPAP-continuous positive airway pressure on patients with breathing conditions caused by pulmonary hypertension and congestive heart failure but who don’t otherwise have sleep apnea. The great thing about this trial for me is that unlike some trials, the risk to my health was quite minimal. CPAP isn’t really dangerous if you don’t have sleep apnea, especially if not long term.
Reporting During the Trial
I had to report weekly during the trial about the results from the use of the CPAP. This was done both via a questionnaire I filled out and by sending in the memory card on the CPAP machine. The memory card on the machine would give them all sorts of information, including how long I wore the machine, what the flow rate was, whether I had any leaks, if I woke up and didn’t wear the CPAP and much more.
Then the questionnaire part asked me questions about how wearing the CPAP affected me in my day-to-day life: did I sleep better, did I feel more rested, was my breathing improved, did my saturation levels increase, did I have more energy, and other such questions. I filled these out weekly. One part was very objective and the other part was very subjective.
The test ran for three months, and during that time, I had regular blood pressure, heart rate and respiration rate checks, had my oxygen saturation levels tested, and had my weight and basic metabolic blood panels tested.
End of the Trial
I did have to give the machine back at the end of the trial and the results of the trial won’t be available to us for about a year from the conclusion date of the trial. I look forward to seeing if others in the trial had similar results to my experiences and to seeing what conclusions were drawn from the trial. It’s possible a new method of treatment that can benefit those with congestive heart failure might be made available due to my help in the clinical trial. I think that’s pretty cool.
Other Clinical Medical Trials
I still search online for clinical trials all the time to see if there are any I qualify for. There’s a great government website that lists reputable clinical trials you can search for here: http://clinicaltrials.gov/. There are other ways to find trials too, but this is one way I trust that the trial is on the up and up. If I were to find one I qualified for, I would definitely consider the options and the risks and probably would participate in a clinical trial again.