Healing my keloid scar

It has been almost two years since my cardiac surgery. At my one-year visit my surgeon was not happy with my sternal incision. He thought I was too young to go through life with an ugly scar. He wanted me to see a plastic surgeon, but I thought it was too soon and was still mentally dealing with a lot of post-traumatic stress - so the idea of going for (potentially) more surgery freaked me out.
At my most recent visit, I was ready. I asked for the referral to the plastic surgeon and he readily agreed.

I sort of blame my keloid formation on a few things: 1) genetics. My mom gets them, my brother gets them, and who knows who else. I even had small keloids where my ear cartilage and naval were pierced. 2) my own stubborn attitude. Since working for a short time in paediatric cardiology, I know that they don't use staples on the sternal incisions - so naturally I refused to allow them to use staples on me. I happen to be persuasive enough to get my way. I also haggled on the number of chest tubes they could use.

Originally I had one keloid form along the bottom 1/3 of the incision, right where a bra crosses. It is itchy, painful and ugly as hell. I knew from day 1 it was forming and there is nothing I could do to stop it. From Noah's surgery, I knew that massage is helpful and I massaged the crap out of it - but to no avail. It still looked awful.

Over the past year, the upper 1/3 of the incision developed keloids that look more like blisters. They are itchy, but less painful and red.  As well, one of my chest tube sites is a keloid too. It doesn't hurt but it is ugly and red. My pacemaker site also has a thickened scar that he could treat, except when it's time to change the battery in 8 years, they will have to go back into that site so there is no point treating it (I say battery change, but really they change the whole pacemaker).

The middle 2/3's is perfect! If it could all have looked like this I would have been very happy!

So I saw the plastic surgeon a few weeks ago. Luckily, I was informed that none of this would cost me anything because it was a referral by my cardiac surgeon to fix his work - it is all covered by OHIP...thank goodness for our healthcare system!). Because the keloids formed on their own (and not in response to an infection), surgery won't help because after he cut the keloids out, I likely would just form new ones. That left me with only one option: injections. He will try steroid injections first, every 6-8 weeks. If I am not responsive there is a skin cancer drug that works on keloids, but he wants to try the steroids first. The steroid is injected right into the keloid. I have read online that this hurts a lot. I am terrified, but he promised it would get rid of the itching, so I am going to try. Apparently it will flatten out the keloid, and minimize the redness. It will not make the scar go away (obviously), but will make it look more white. There is a risk of micro vessels forming on the surface, but anything is better than what it is now.

I was told that tattoos are out of the picture - I was hoping for a couple of small ones - because they would keloid as well, and that would just be ugly. Also (he didn't say this, but it is implied), breast implants are out too ;) Oh well....

Here is my before picture:

Addendum: Um that HURT. Like...a LOT. Like, really really bad. I was arching off the table and sweating profusely. So they inject the steroid, diluted with solution to freeze the area. Regardless, it hurts and you feel it going in. It feels like it is tearing the tissues apart. Surprisingly, I assumed the larger bottom keloid would be the worst, because symptomatically it is the one that bothers me the most. However, the ones on the upper 1/3 hurt the most. The higher he got on my chest, the worst it felt. There is just no tissue there to adsorb the pain! I've been assured that next time won't be so bad. To be honest, the pain is worth it. It is only for the 10 min's it took to do the procedure. It's been two days and it hasn't been itchy or painful. So that is already a billion times better than it was!

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!

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 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

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

Always remember....

My grandfather, who passed away quite a few years ago now, was very special to me. We had a special bond. He fought in the war, however we never heard stories about it. He didn't want to share. So I know nothing of his time in the war.

A few years ago my brother came upon why he received the Croix de Guerre online:

BELLIVEAU, Joseph Gerald Bernes, Able Seaman (V-50977) - Mention in
 Despatches - RCNVR - 
 
 Awarded as per Canada Gazette of 20 January 1945 and London Gazette of 26
 December 1944. Home: Campbellton, New Brunswick. BELLIVEAU. Joseph Gerald
 Bernes, V-50977, AB, RCNVR MID~[20.1.45] Croix de Guerre avec Palmes en
 Bronze(France)~[30.3.46] "For gallantry, skill, determination and
 undaunted devotion to duty during the landing of Allied Forces on the
 coast of Normandy." 
 
 BELLIVEAU, Joseph Gerald Bernes, Able Seaman (V-50977) - Croix de Guerre
 avec Palme en Bronze (France) - RCNVR - 
 
 Awarded as per Canada Gazette of 30 March 1946. NOTE: No London Gazette of
 18 December 1944 which some sources show as his London Gazette date. "On
 the night of the 4th and the 5th July, 1944, during five separate
 engagements with the enemy, this rating coolly exposed himself to a very
 heavy fire to clear a stoppage of his 2 Pound Gun." 

July 4, 1944
Action off Trouville. 
The night of the 4th and early morning of the 5th brought a prolonged
engagement with E-boats. Boats 459, 462, and 464 were on their usual
protective patrol about the assault anchorage. Shortly after midnight, radar
indicated the approach of enemy craft from Le Havre. A few minutes of
stalking followed; then 'starshell' revealed a line of nine E-boats two
thousand yards away, making for the anchorage. As the Canadians opened fire,
the German craft broke off into the dark, one of them trailing after the
other, heavily hit and ablaze. The rest were overtaken in about half an
hour, and the boats of the 29th ripped in through a smoke screen to damage a
second craft. Pursuit was complicated by the appearance of a German dive
bomber, whose efforts inconvenienced the Canadians, but failed to encourage
the disorganized E-boats to make a stand. When the chase was finally
abandoned at the entrance to Le Havre, one E-boat, lost in smoke, was
considered sunk, and two others had been badly damaged. This was the
longest-fought coastal forces action in history. It appeared that another
unit of E-boats had come down from Fecamp, and run straight into the E-boats
with which the 29th had just disengaged. A terrific all-German battle
ensued, and the air was filled with massive quantities of green and yellow
tracer going back and forth. The E-boats were fighting each other! 
Of the some 17 German E-boats in the area, three were sunk, with a possible
total of four in all. 
After these actions, the 462 starboard engine broke down. While limping away
to the control frigate they were dive-bombed by a Heinkel. The two remaining
boats, 459 and 464, sighted two German minesweepers escorted by two R-boats.
As the M.T.B.'s turned in for a torpedo attack, they were seen, and the
enemy opened up with 'starshells' and 88 mm shells. The shore batteries
opened up as well. Their shells came crashing angrily about the boats,
making a most uncomfortable barrage. The German Convoy turned back toward Le
Havre. 
The crews of 459,462, and 464 were absolutely exhausted, both physically and
mentally. The three wounded boats limped back to Portsmouth for repairs. 

This year I will remember and miss my grandfather, whom I loved dearly. And remember my grandmother, who also served her time to the war. I love them both

Running a race

Running and I have always been closely entwined: In highschool I was a sprinter (100m and 80m hurdles), through my university days (1997-2008)I ran to stay in shape and after I had Layla I ran with the purpose of completing a 5K race (which I did - in 28:47min). Since I come from a sprinting background, nothing longer than 5K interests me - that is long enough!

Since the start of 2012, I started noticing that I couldn't run. I would go on the treadmill and be able to run for maybe 45 seconds. I tried running my 5k loop outside, and I had even less success. I couldn't believe I was that out of shape. I went to my doctor and tried to see if it was asthma, thyroid, anything that would explain this. Nothing came up....until July when I found out about the tumour that had been inside of me for who-knows-how-long.

So I thought I would write about my road to recovery and running since a lot of people seem to be shocked at how long it is taking me to recover. I keep hearing "You are young and healthy...why are you having such a hard time?" or "Maybe your pain threshold is lower" (I'm sorry....no....I had back labour with Noah and my epidural didn't work so believe me I can handle the pain). The nurses in the hospital said typically the old and young actually seem to have an easier time recovering than adults.

So on July 13th I had open heart surgery. I was home by July 18th. In the hospital they wanted you to get up and walk once you were out of the ICU (actually they had me stand in the ICU but I hardly remember this). It took me nearly 4 days before I agreed to this. Between the drugs, needing a blood transfusion and the pain I was too dizzy and loopy. I couldn't even walk to the bathroom unassisted. By July 17th they made me walk to the nursing station and I honestly thought I'd never make it. They told me it will take me 6 weeks to be able to walk 30 min's (which by the way, feels like a very long time when you are just waiting to feel better). At home I had the horrible sensation that I couldn't breathe for days. It turned out to be because i was in atrial fibrillation with a heart rate of over 170. So after getting a pacemaker on July 25th and being cardioverted a bunch of times, my last episode of fibrillation was August 6th - nearly one month after my stroke.

So the cardiac information booklet they give you says you could return to work after 6 weeks but I was nowhere NEAR able to go back to work yet.

On September 14th (2 months after surgery) I had a stress test with my cardiac rehab. I couldn't do much as I was largely inactive. They use the stress test to set a pace for you and design workouts. After the stress test they make you do one mile with the pace they set for you. I had to do one mile in 15 min's (which was the fastest pace they set for people). I can honestly say that at the end of that mile I was nearly dead. After that they had me walk 2 miles in 32 mins 5-6 x/week. It was very hard at first and my heart rate went very high (150). I had to be careful because my pacemaker has a maximum heart rate set on it (130) and I have to stay below that. I am not used to paying such close attention to my rate. I ended up returning to clinic to have it set higher (160).

My 2 mile walk is so easy now that I text and bbm during the walk but they won't increase my mileage yet. First I had to walk it faster (so now I'm at 29 min's). Do I feel like I could run? You bet. Can I do it and keep my heart rate below 160? Doubtful.

So for now, I am not allowed to run until I do another stress test. I hope to run a race next summer....

In addition to cardiac rehab I'm still in stroke rehab. He has me doing so many squats and lifting so much weight I'd better become the 5'3" version of a Victorias Secret model.

Learning the art of boredom....er....relaxing

When this whole cardiac journey is over, I will have been off for four months. Those who know me well, know I don't know how to relax. I can't sit through a movie. I must at all times have some project going on in the house to do when the kids are asleep and sitting with the kids at the park is a painful act of patience. So being off for four months is sheer torture to me. I like working and miss my job right now.

To be fair, the first month was spent in hospital, the second month was filled with narcotic hazes and memory loss, now I am into month three and I'm getting bored. I don't have the energy yet to do much walking and I'm on drugs that make me susceptible to harsh burns if I'm outdoors. So I spend 90% of my time indoors and it is rough.

How do I spend my time?
I have weekly:
-blood work
-stroke rehab
-cardiac rehab (in addition to working out 3x/week with their program at home)
-social work
-massage therapy (for the chest contractions post-op and the subsequent knots in my back)

And every six weeks I spend half a day at:
-pacemaker clinic
-cardiac clinic

In addition I can do drop in appointments to pacemaker clinic to have adjustments made to my rate. I've been trying to decrease it and make it less sensitive to movement.

So that makes up a large portion of my time.

However, I usually only have one appointment a day so how do I spend the rest of my time? Lately, I have no attention (lets be honest, it has never been that great). It may be the stroke or it may be boredom. My social worker suggested I have a bunch of easy activities and rotate through them that I can do indoors.
My list is like looking at an elderly person's list. Seriously, what can a young person do indoors?
-knitting
-cross-stitching (great for stroke rehab)
-puzzles
-sudoku
-zen-doodling
-read (I have no attention span for reading now which makes me sad because I always have my nose in a book)
-publishing my article from my Masters degree
-working on my two children's books
-playing the flute
-watch tv

Thank God I have wonderful friends. A few are on mat leave, some are shift workers, others take a day off and visit me. They make my days way more enjoyable.

I don't have the energy to clean for long periods of time or walking - so sitting around the house is isolating and excruciating. I'm currently getting our money's worth from Netflix (we don't have cable so I am not able to catch up with DOOL). Shopping for clothes is out because I can't quite move my pacemaker arm yet to try on shirts. I have a gift card I'm dying to use for a new wardrobe but maybe in a month I'll be able to endure a long trip to the mall.

So there you have it: I am absolutely dreadful at staying at home. I don't know how to relax, and I currently have elderly hobbies.

I drive Keith nuts when he comes home, insisting he sit and talk to me all night long. To distract me he sits me in front of a puzzle and I spend the rest of the night fighting Jade off the pieces. Not very relaxing...