For the most part I feel good: my hair has stopped falling out from the stress of open-heart surgery, I am back to working full-time, I am half way done my cardiac rehab and life feels normal. However, I had noticed that I never really got my lung capacity back to what it was before surgery: even the simplest activities leave me short of breath.
About 2 months ago I noticed that every now and then when I coughed, I would bring up blood. I could tell it was coming from my lungs, and it wasn't a lot - however, it was bright red blood. It took me a while to get in to see the doctor: life always seems to get in the way. While I waited for my appointment, I had a TB skin test, as I knew that would be the first suggestion.
At the doctors, we decided a chest x-ray would be a good first step. Then my doctor decided to send a referral for both a CT scan and a respirologist appointment and see which one came through first. We also did a round of hard-core antibiotics used for pneumonia.
I got a call after the xray at work and my doctor told me they found an opacity on the xray in my right lower lobe. She didn't know what it was so we needed the CT scan to get a better image. This was all around Christmas so it was hard finding an appointment. At my insistence, we sent CT requests to about 5 different hospitals between the GTA and York region to see who could see me first. One hospital called me and booked me for a CT scan on Dec 31st.
At the CT scan, I told the technician: "This is my last CT scan! I have had two in the past 6 months!" (I was particularly worried about them causing cancer given one CT scan is like having a year's worth of x-rays).
The following three days I was off with the kids, as it was just after the new year. My doctor called me as soon as my results were in. She couldn't get through my land-line and I was having a dance party with the kids and didn't hear my cell ring. When I finally got the message I felt sheer panic set in: "Please call me...here is my home number. I need you to go to the emergency room right now". I called her back on her home line and asked what was going on. The CT showed a mass, possibly a lymph node, in my right lung and a pneumonia below the mass. The preliminary report indicated they thought the lymph node was enlarged due to a pulmonary vein thrombosis: this is potentially life threatening. She told me to do a quick google search and I quickly found that they are associated with atrial myxoma's....so after a quick cry, Keith dropped me off at the emerg.
ER was PACKED...in all my visits over the past 6 months I've never seen it this busy. My family doc told me to ask for a CT with contrast (so much for no more CT scans). I was there for many hours before we did it. The contrast burned and made me break out into hives, but it was nothing compared to what I've been through in my past. The doc found me and said that there was not a blood clot in my lungs, but there is still a mass: a right hilar lymphadenopathy. He wanted me to stay to talk to the internal medicine doctor. Basically it is a lymph node but the causes usually include: neoplasm (a tumour), TB (ruled this out already), sarcoidosis (a disease causing inflammation of the lymph nodes) or fungal infection.
Around 4am he came to tell me that I need to see a respirologist. Since it was not life threatening, I could wait to see what a bronchoscope would find. In the meantime he decided to test for lupus, since it can cause these symptoms (that came back negative). Because of all this panic, my doctor had got me in with the head of respirology at a big hospital downtown. They called me and saw me within the week. It was all moving very fast.
A bronchoscope was booked for a monday morning. At this point we knew two things: 1. There was something going on with my right inferior pulmonary vein. 2. I'm coughing up blood...likely from the pneumonia. So the scope was to figure out the hemoptysis (a fancy word for coughing up blood). After my very terrifying experience with the scope pre-op, I was less than thrilled. He promised me I wouldn't notice a thing.
Monday came and I was a wreck, but after a lovely dose of fentanyl and versed I don't remember much (I do remember being held down and forced to swallow the numbing spray). The doctor said I fought him a lot but I don't really remember. The scope showed my right lower lung is really irritated but there is no specific source of a bleed. So they think it is from the irritation. He also sent some water into my lungs and sucked it back out with cells to see if there is anything growing in there. He said otherwise, he can see no mass. (Insert huge sigh of relief). He suggested I have the cardiologist do an echo to check the right pulmonary vein (which, I had discovered, was the very vein they reconstructed with bovine tissue in my surgery).
I called the cardiologist office the next morning. He said the only way he could do the echo and see what he needed to see was by TEE: a trans-esophageal echo....you know, another scope! UGH! I begged (literally) for another test. But it had to be done. I got a call the following day that I was booked for Friday. Two scopes in one week!
At the TEE, I was very terrified because they were only using valium to sedate me, which is what they used last time and I remember it very clearly. So to avoid biting the doctor again I persuaded them to call anaesthesia and use propofol. Thank goodness, because I don't remember a thing. After the scope the doctor told me it all appears to be fine. He saw no tumours and as best as he can tell the pulmonary vein is patent and blood is flowing.
So now...what do I know?
NOTHING! I am no further ahead! I just know there is no tumour in my lung. That's all I know.
I have called the surgeon to get his input about that pulmonary vein he rebuilt, and to see if he can hazard a guess as to why I have a massive lymph node in my lungs and what is bothering my lung so badly it is bleeding.
So there you have it...chapter 2. I am still working on a conclusion. I'll let you know when I have a good ending