Here we go! A summary of the events that finally brought me to the Okayama Medical Center (OMC), Japan, where all the good stuff happened. After the initial four balloon pulmonary angioplastyBalloon Pulmonary Angioplasty Balloon pulmonary angioplasty, or BPA for short, is a technique for widening narrowed or blocked blood vessels in the lungs of CTEPH patients. Small balloons attached to a catheter restore blood flow to areas of the lungs that do not receive blood due to the disease. When successful, BPA eliminates or reduces shortness of breath, increases exercise tolerance and quality of life, and extends life expectancy. (BPABalloon Pulmonary Angioplasty Balloon pulmonary angioplasty, or BPA for short, is a technique for widening narrowed or blocked blood vessels in the lungs of CTEPH patients. Small balloons attached to a catheter restore blood flow to areas of the lungs that do not receive blood due to the disease. When successful, BPA eliminates or reduces shortness of breath, increases exercise tolerance and quality of life, and extends life expectancy.) procedures, my lungs were like new, and I had a fresh outlook on life. My quality of life improved immensely as I could walk and exercise without experiencing any breathing difficulties.
Timeline
- December 31, 2013: I almost lost my life in a cycling accident that permanently damaged my lungs (read more about it here). I am convinced that this accident triggered all my future health problems. But no one can say for sure.
- Fast forward to the summer of 2020: I was diagnosed with a pulmonary embolism (PE) and had to stay in the hospital for six weeks. [*]
- February 2022: back in the hospital. This time they diagnosed CTEPHChronic Thromboembolic Pulmonary Hypertension CTEPH is short for chronic thromboembolic pulmonary hypertension, a rare form of high blood pressure in the lungs caused by blood clots or narrowed blood vessels. High blood pressure in the lungs is often also called pulmonary hypertension., a rare form of pulmonary hypertensionPulmonary Hypertension (PH) High pressure in the blood vessels leading from the heart to the lungs is called pulmonary hypertension. The arteries in the lungs and the right side of the heart are affected by pulmonary hypertension. If untreated, the right side of the heart will weaken over time, eventually leading to heart failure and death. The WHO has defined five distinct groups of pulmonary hypertension, each with a different cause. CTEPH is a form of PH (WHO group 4). - References: mayoclinic.org and cdc.gov. I was hospitalized for two weeks and then discharged with medication to relax the blood vessels in my lungs. Back home, I needed supplemental oxygen at night. [*]
- From March to August 2022, the medication worked, and my condition improved significantly at first, but after about four months, it worsened again.
- In mid-October 2022, I finally made it to Okayama Medical Center for BPA treatment, and I stayed there for about four weeks (until mid-November 2022). After the second BPA procedure, I felt like a new person (read the story of my second BPA procedure here).
- The story continues. I returned to Okayama Medical Center in June 2023 for a quick follow-up examination and treatment. In just three days, I received two additional BPAs, further lowering pulmonary artery pressure and vascular resistance. I was discharged on day four.
- Happy ending (for now)! Per the guidelines [1], I revisited Okayama Medical Center for a checkup in June 2024, exactly one year after my final BPA. I am cured of CTEPH! All my hemodynamic parameters are back to normal.
[*] I have been taking anticoagulant medication (blood thinners) since my PE diagnosis. First, one of the novel DOAC (direct oral anticoagulant), often also called NOAC (novel oral anticoagulant). After the CTEPH diagnosis, we changed to warfarin. The 2022 ESC/ERS guidelines for the diagnosis and treatment of pulmonary hypertension recommend warfarin as a blood thinner for CTEPH patients.[1]
A moment of shock.
Chronic thromboembolic pulmonary hypertensionChronic Thromboembolic Pulmonary Hypertension CTEPH is short for chronic thromboembolic pulmonary hypertension, a rare form of high blood pressure in the lungs caused by blood clots or narrowed blood vessels. High blood pressure in the lungs is often also called pulmonary hypertension. (CTEPH) is a rare and potentially fatal condition, especially if it’s inoperable, like in my case. It’s a progressive disease, which means it worsens over time, and I was told that I had maybe two to five years to live—despairing news!
I escaped death once and wasn’t ready for it now.
After a moment of shock, I collected myself and began to consider the situation. I recalled my previous encounter with death, my accident in 2013. At that time, sheer chance and the skill of my Thai doctors saved my life.—But what chances, if any, do I have now?
I narrowly escaped death before, so I figured maybe I could pull it off again. Let’s give it a try!
Researching CTEPH.
Being the person I am, I started researching my condition and, after several months, discovered a potential solution: balloon pulmonary angioplasty (BPA)!
Japan, here I come!
My local doctors were initially skeptical and feared for my life. BPA is still generally considered risky. Yet, my research clearly showed significant improvements in the procedure over the past few years, with overwhelmingly positive outcomes for patients [2].
After contacting CTEPH expert centers outside of Thailand and presenting the results of my research, my local doctors changed their minds and supported me. They cleared me to travel to Japan for treatment in October 2022.
Room for more.
Inspired by my successful initial treatment, I returned to Okayama Medical Center in June 2023 for follow-up examinations [**]. During the tests, they found that my condition had improved significantly. Still, there was room for more, so I underwent two more BPA procedures (read more about it here).
[**] A follow-up visit is usually recommended within three to six months of the first series of BPA interventions [1, 2].
Happy Ending.
The guidelines for pulmonary hypertension [1] recommend a follow-up one year after the last treatment. Therefore, in June 2024, exactly one year after my final BPA, I returned to Okayama Medical Center. The results showed that I am cured of CTEPH! All of my hemodynamic parameters have returned to normal. A happy ending, at least for now!
Please do not hesitate to contact me if you want additional information or have questions about my experience with BPA or CTEPH.
Why Japan?
Why did I choose Japan for BPA treatment?
Given the current lack of CTEPH expertise in Thailand, Japan turned out to be the ideal choice for me. It couldn’t have been more perfect!
Resources for Doctors and Health Professionals
Balloon pulmonary angioplasty (BPA) is a novel yet safe and effective treatment with a fair chance of curing inoperable chronic thromboembolic pulmonary hypertension (CTEPH). A wealth of new research on these topics has appeared in recent years. Regrettably, a lot of clinicians are not aware of the potential of this technique. To address this, I have compiled a series of video lectures and a selection of the most recent research.
References
[1] Humbert, M., Kovacs, G., Hoeper, M. M., Badagliacca, R., Berger, R. M. F., Brida, M., Carlsen, J., Coats, A. J. S., Escribano-Subias, P., Ferrari, P., Ferreira, D. S., Ghofrani, H. A., Giannakoulas, G., Kiely, D. G., Mayer, E., Meszaros, G., Nagavci, B., Olsson, K. M., Pepke-Zaba, J., Quint, J. K., … ESC/ERS Scientific Document Group (2022). 2022 ESC/ERS Guidelines for the diagnosis and treatment of pulmonary hypertension. European heart journal, 43(38), 3618–3731. https://doi.org/10.1093/eurheartj/ehac237
[2] Saia, F., Galiè, N., Matsubara, H. (Eds.). (2022). Balloon pulmonary angioplasty in patients with CTEPH. Springer. https://doi.org/10.1007/978-3-030-95997-5