Wednesday, June 12, 2013

I can't seem to catch a break!

It has been almost a year since I had my stroke and open-heart surgery. In this past year I have not only endured those events, but the insertion of a pacemaker, intense stroke and cardiac rehabilitation, coughing up blood (investigated with two scopes being shoved down my throat) and now a new issue: overt hyperthyroidism. It is such a small issue compared to what I've been through I just feel like I can't catch a break!

I spend a large portion of my time at specialists either for myself or for Noah. Noah himself recently had his 5 year well-child checkup at the paediatrician, his cardiac appointment (which thankfully went very well!), and a thrombosis appointment (he developed a femoral clot after his first surgery and the thrombosis team follows his recovery). For myself I have: pacemaker clinic twice a year, cardiologist, respirologist, psychiatrist (PTSD anyone?), gynaecologist, gastroenterologist (did I mention I also have pre-cancerous polyps?!), and now an endocrinologist. I have more specialists than my elderly grandmother!

I am being referred to an endocrinologist but here is my theory: the amiodarone. While I have been off it for 8 months, in the 2 months I was on it I received two major IV bolus' (one was over 24 hours, the other was in emergency right before cardioversion) and oral doses daily. When I took the oral doses, you take it three times a day for one week, two times a day for two weeks and then once a day until you are off it. Here is the kicker with amiodarone: it's half life is 100 days. Which means it sticks around a LONG time. I am talking a really long time. Well over a year. So it is entirely possible that it is the amiodarone (at least to me...we will see what the endocrinologist thinks). Does that mean this is reversible? I have no clue. I had my thyroid antibodies checked and they were negative, which means it isn't caused by an autoimmune disease such as Graves disease. Or at least that is how I interpret my own bloodwork, which I have been analyzing while waiting to hear from the specialist.

So it is no wonder I feel awful lately: I've had heart palpitations (which I was just going to mention at pacemaker clinic since they can look at my rhythm when they upload the past 6 months from my pacemaker and tell me what the arrythmias actually were), I've had a very hard time with my weight (which is the opposite to what is supposed to happen with hyperthyroid), I am also, to put it mildly, freaking exhausted. I am not talking slightly tired....I can't stay awake to save my life. I fall asleep on the train to and from work guarenteed. But I am also falling asleep when I am charting on my patient's at work! At least I haven't started falling asleep when counselling patients! I have also noticed since training for the 5K that my thigh muscles feel very weak. I assumed it was de-conditioning, but now I realize it is probably my thyroid. Not to mention the fact that I just can't seem to get my exercise tolerance up! I am sure my list of complaints could go on and on.

Suffice it to say, I just haven't felt "myself" since before my surgery. I felt so healthy and well before it! I want to feel well again. I want to not feel like a sickly elderly person. I want to not have to deal with my collapsed lower lobe of my right lung. I want to be able to fully run the 5K next month. I want to not fall asleep when putting my kids to bed. I want to read on the train again.

So we shall see what the endo says. I am truly hoping we can avoid any meds that will make me gain weight, such as steroids. I also want to avoid the CT scan to diagnose the source of the thyroid problems. I don't need a fourth CT scan this year! I am a difficult patient but I am a health care professional...and we all know they make the worst patients!

Monday, January 21, 2013

Chapter 2

I am now 6 months into my recovery. I have been doing ok, but I have recently been through a battery of tests in a new complication. I thought I would share the journey, as I always do.

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 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' after a quick cry, Keith dropped me off at the emerg. 

ER was 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 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

Wednesday, January 2, 2013

Our year in photos - 2012 edition

 I have a hard time reminding myself that all of 2012 wasn't a nightmare. So, here is our year in photos - as best as I can do because I don't think Keith was snapping photos of the kids during July and August.

January 2012: We actually have few photos for January. Layla has always loved having her photo done. She would be 1 year 9 months here
February 2012: Noah (3 years 9 months)  at his swimming lessons. He hates swimming, but still posed for photos
March 2012: Keith and the kids
April 2012: Layla turns 2 with a carebear/Toy Story birthday theme
May 2012: Noah celebrated his 4th birthday with a massive Spiderman bouncy castle and his first friends party
June 2012: Steam train trip with the Hemingway family
July 2012: I had my stroke on July 8th, so we have few photos of the month. However, this one is one of my favourites. Layla wore a regular pull up in the pool and it got massive in the water!
July 2012 #2: My heart surgery was on July 13th (that's Friday the 13th!). This was five days later in the hospital. Bad photo but I felt like garbage....
August 2012: Noah graduated from preschool

August #2: At the end of July I got my pacemaker. This is a few weeks later. The swelling and bruising took forever to go down. I had lost a lot of weight (though I'm not sure how much, my best guess is 15 lbs).

Sept 2012: Noah started Junior Kindergarten!

Sept 2012 #2: I was lucky enough to celebrate my 34th birthday (along with my niece Zoe, who turned 4)
Oct 2012: Life is starting to return to normal.

Oct 2012 #2: Halloween - it was very rainy but they still went out.
Nov 2012: After 4 months off work, I return to the clinic part-time

Dec 2012: We celebrated a wonderful Christmas with family