Mark’s life changed dramatically when he was diagnosed with a pulmonary embolism (PE), a blood clot in the lungs. In his own words, here is Mark’s story about how follow-up care saved his life:
My story starts like many others, but does not end in the way you may think, thanks to the follow-up care provided by Massachusetts General Hospital (Mass General) and Dr. Rachel Rosovsky. I woke up on a morning in August of 2016, feeling fine. But, I soon realized I was having trouble breathing. As the minutes went by, it got more difficult to breathe. I told my wife we needed to take a ride to the hospital. I thought I was having a heart attack.
I got to the local hospital and the emergency staff was wonderful. They told me, “You are not having a heart attack. You have a pulmonary embolism (PE).”
“This was a good thing,” I thought to myself. “I’m not having a heart attack.”
But I was still having trouble getting a breath.
The doctor in charge told me that they were unable to do anymore at their hospital and asked me which hospital I would like to be transferred to. From the background, my 81-year-old mother Maureen, a retired nurse, yelled, “Mass General!” That small statement changed the trajectory of my life.
Off I went in an ambulance to Mass General. When I got admitted, the doctor assured me that I wouldn’t be waiting long and that their PE response team (PERT) was discussing my case. Within 20 minutes, a doctor walked into my room and told me that they would be removing the blood clot from my lung and that I would be prepped for surgery.
Every person involved seemed to know exactly what they were doing and what was going to happen. They spoke to me throughout the whole procedure. When the doctor was done, he told me that he was a bit upset, because they were unable to get the complete clot out, but that they would break it up over the coming days with medication.
After surgery, I was moved to the ICU. The nurses explained everything and made sure I was comfortable. I met with a team of doctors each day, who continued to update me on my progress.
Finally, I was ready to be discharged. This is where my experience differs from most PE patients’.
As I was being discharged, my nurse sat down with me and explained to me what I needed to do after I left the hospital. As she was explaining what would happen, all I could hear was Charlie Brown’s teacher going “Wah Wah Wah.” My nurse clearly knew I was having trouble following, so she highlighted everything on my post-discharge papers.
On the paperwork, highlighted in yellow, was a follow-up appointment with Dr. Rachel Rosovsky. I remember my nurse repeatedly saying that I had to go to this follow-up clinic.
In September, I showed up to my appointment. This was where I began to realize how serious my situation actually had been back in August. You may be asking yourself, “How did this guy not realize how serious his situation was?”
I honestly never felt scared or had any questions that went unanswered when I was in the hospital. Everyone seemed extremely calm around me, so I never worried.
That changed when I met with an assistant working with Dr. Rosovsky. He introduced himself to me and I told him who I was. He replied, “You are the PE patient? I was on that call the Saturday you were admitted, and I’m surprised I’m actually speaking with you today.”
That was the first time I realized how serious my situation was.
When Dr. Rosovsky arrived, I was greeted with a big smile.
She told me they were starting an aftercare program to ensure blood clot patients understood what had happened to them, what treatments were available to them, and to find out what had caused the blood clot in the first place.
She explained that when people don’t understand what happened or why they are on a certain medication, there tends to be a high rate of folks who stop their treatment. When that happens, patients can develop recurrent blood clots that can be deadly.
Dr. Rosovsky was part of the PERT team that discussed my case and decided on my best treatment back in August. She told me we were meeting to determine what had caused my PE, how I was doing, and my treatment, so that I could avoid any recurrent blood clots in the future.
She asked me to tell her my story and she took copious notes. She was interested, because I didn’t have any clotting gene or any family history of clotting. I was also mildly anemic. She decided to run some tests and took some blood.
On Monday, September 12, 2016, I get a call from Dr. Rosovsky. She told me that she wanted me to come in and meet her and her colleague Dr. Andrew Yee, ASAP. They arranged to meet me on Wednesday. I met with Dr. Rosovsky and Dr. Yee, and she explained that they had found out what had caused my blood clot.
“You have a form of cancer called Multiple Myeloma.”
Multiple Myeloma is a form of blood cancer that develops in the center of the bones, an area known as bone marrow.
They explained what the cancer was and how it affects individuals. At this point, Dr. Rosovsky told me Dr. Yee would treat me for the cancer moving forward, but she will still be my PE doctor.
From that day forward, I have only felt better. I am forever grateful for the follow-up treatment plan that my doctors implemented.
I want other patients to know that follow-up care is so important. When you’re sick, your care doesn’t end when you leave the hospital. Sometimes, it’s just beginning.
Mark was able to go on to receive treatment for his cancer. He would like to give a special thank you to his mother, Maureen, who did not miss a single treatment session during the year he was actively being treated. Mark’s story highlights the importance of follow-up care. Patients who have experienced a blood clot should always pay close attention to what their doctors tell them and be sure to stay on top of their medical appointments.
Thank you, Mark, for sharing your story!