Waiting by the telephone…

It’s been an informative few days and I have had so many pm’s asking for an update.

Tuesday afternoon we drove to Launceston to meet the cardiologist who has replaced Dr Z ( whom I consulted back in March and reluctantly signed the CT angiogram form).

The Charles Climic is located in the former Launceston General Hospital, up a hill with minimal parking. The hairdresser in the building seems to have more allocated parking spots.

I feel sorry for the incapacitated trying to get a spot for their car.

Once inside it is all very clinically pleasant. We were not kept waiting long and we met Dr Pal, the man whom I hope is to be my hero.

He has an impeccable educational background at Oxford where he has won lots of awards for a variety of academia and research. He finished his training at Flinders University hospital.

I immediately warm to him as he speaks in a sincere, kind, warm and empathetic manner. He tells me what he needs me to know with simple words, models and sketches. He points out the concerning aspects of the scan.

The three major arteries all have disease. One is severely calcified and stenosis (blockage) one is moderate to severe and the third moderate. Crap crap crap.

They cannot remain like that as I’ll likely suffer a catastrophic event…I always thought catastrophic events were earthquakes, floods, fires but with your heart it means heart attack or cardiac arrest.

Dr Pal explains that the scans are one dimensional and he needs to look inside my arteries via the catheters used in an angiogram.

He explains that the reason I have advanced coronary artery disease and no apparent symptoms is due to the level of my fitness. A less fit person would have had angina pain, but my heart compensated by making stronger heart muscle and learning to do more with less available blood to the heart. I have a higher exercise threshold tolerance.

He said that is why sometimes you hear of fit sports people dropping dead with heart issues. It is only upon autopsy that the underlying conditions are then revealed.

That is scary. So the ‘ordinary’ person with less fitness gets warning signs, but fitter people do not necessarily. Think about that fit people…..

The next steps involve patience on my behalf as I want to get cracking on getting better. Cracking probably not a great choice of word if it ends up open heart surgery.

I am booked in for an angiogram but his first available spot (he operates one day per week in Launceston) is Fri Aug 5th….but….he has put me onto his wait list for the first cancellation. I would likely find out the day before.

It is Thursday now, the phone has not rung…..🥲

Secondly, he has tentatively booked me into his next operating list in Hobart in August at the Hobart Private.

When he does the first angiogram there are three possibilities it seems.

The first is that he can place stents and I can start recovery.

The second is a look and see to check the percent of blockages and then schedule me into his Hobart session where he would drill out the crap from the arteries and then place stents.

The third possibility is a look and see to check the percent of blockages and then refer me to Dr Ash Handikar, cardiac surgeon in Hobart, for open heart surgery (by passes). That could be a 2-4 week wait upon referral as the only cardiac theatre is at the Royal Hobart and more catastrophic cases can bump yours.

I’m nervous about needing wait my turn as I want to live.

I did ask about walking and has said I can a few times per day for 20-30 minutes but my heart rate must stay under 90 bpm.

He has put me on the usual cocktail of drugs. Doubled the statins as I’ve tolerated the lower dose from March. Despite not having high blood pressure or heart rate, a beta blocker to depress both and aspirin to thin the blood. My pharmacist son Luke explained to me why.

In case he gets a cancellation I have already completed the pre angiogram bloods and paperwork for admission into Calvary.

The journey has started and now it is a waiting game.

I need to chill….

I am very thankful for all the support I have received. So many messages and athletes asking me about the test as they want to push their doctor to refer them to check.

That is great and my aim to increase awareness for all my fit friends. This disease is so prevalent and hides within the fit. If you have a family history of cardiac disease please start the discussions.

I do feel let down in many ways by my cardiologist of over 10 years as all he ever did was the stress test and ecg. If he looked in the file notes the family history was there, but even he judged me by my fitness.

Empower yourself with knowledge, ask the questions and maybe avoid being in the position I find myself.

Big hugs to Sue M for her regular phone calls. We have reminisced about our fun times together and maybe that’s a blog in itself. She told me she loved me, as did Pauline B. I love them back 💕

I’ve had conversations with each of the kids, and I need their loving support and encouragement.

My rock, that’s Tony and today is his 61st birthday. A quiet night at home as I cannot risk Covid. That could stuff things right up. He is having to be careful as he is the one out and about. We are planning to head over to our Berry Patch and sit outside for a meal on Saturday, rugged up!

The beta blockers do help anxiety. They make you tireder but I’m not sleeping any better. I am practising deep breathing as I lay awake thinking….

With the slow down of metabolism with the beta blockers I’ve reduced food portions as weight gain is common. So many potential side effects.

Maybe the phone will ring tomorrow. 🙏

Next steps…

After being told to get off my bike and not ride, at all, that freaked me. I asked could I walk? They said, ‘if it feels safe’. Seriously, what does that mean? I felt ‘safe’ riding 100 km. I felt safe riding 3000 km ( well except that day on the French National truck highway). Remember I have had zero symptoms. Zero.

Shaun P and Paul the zwifting cardiologist both told me to walk. For your mind if nothing else. This has been reinforced by Sue Mc and Di O, both wonderful nurses.

So twice a day I am now walking with Tony and Khaleesi. Not long walks as Khaleesi needs frequent but shorter works due to her bilateral hip dysplasia diagnosis. Bit slower to not get my heart rate up.

I would usually walk her at lunchtime when working from home, but I’m not currently as she is a very strong dog that I need to exert effort into at times to obey. That I am sure raises my blood pressure, so for now, we all go together with the second walk when Tony gets home from work.

The walkway adjacent to our home
Our beach, lower tide
Our beach
Pile of logs from floods in 2011 still remain above the high tide mark. Higher tide, so we walk down along the pebbles.

I am getting up at 4.45 am still. All three of us are awake anyhow. We walk early. I am amazed how many wallaby there are in our area grazing in peoples gardens. Khaleesi sees most and her prey or maybe play instinct is strong and Tony has to reign her in.

Back home and I make my new world coffee….cappuccino using almond milk. Ordinarily I would have a double shot black at this hour before I started riding but now I am ‘treating’ myself.

Almond milk is taking some getting used to but I am enjoying it more each day. Thankyou to all the almond farmers who get up early to fastidiously milk their almond herd.

I chose this cup deliberately this am,. Bright and cheery and a gift from my long departed sister in law Cheryl who succumbed to lung cancer 14 years ago. I have kept these, as I am very sentimental.

I started working at 6 am yesterday. My managers have been very kind and generous with their flexibility. I have patches of super productivity then I lapse…and need to refocus.

I have multiple grant programs on the go and they all need tweaking and there is a bureaucratic process that must be followed, so nothing happens as quickly as you want. So plenty to occupy me.

I found this at the weekend as I sorted through old files. Very cute. I left it on my little table next to my recliner. Nice to remind myself that my kids love me. I love them so much.

I turned 60 a few weeks back. It was nice to be with Ben as it was his birthday too. We enjoyed brunch together courtesy of my daughter in law Sharon. Then we wandered around Basel, a beautiful city.

I remind myself of the day here as I look at the beautiful present Ben gave me. It makes me remember our wonderful cycling trip as those three mountains are the Eiger, Monch and Jungfrau that featured heavily in my posts from Wilderswil.

The knife in front he gave me for Mothers Day, it is a panorama cheese knife with a cut out section in the shape of numerous Swiss peaks, including those three.

It is a goal to get back there I have decided.

The view from our bedroom of the same three.

I have been overwhelmed by the support in this journey. Many of you have told me stories re yourself or a loved one. A few have told me sad stories too but overall the positive stories are in the majority.

I have been accepted into a support group page for cardiac athletes in rehab and it is truly incredible what many of these are doing and achieving.

My girlfriend Sue has had a few long conversations with me and we have reminisced about our adventures together. Laughed lots. She has made me promise to ring her and I will today.

Pauline B has messaged regularly and made me promise I will stick around.

Di O has given me sage advice along with Shaun P, both experienced nurses.

Then there are literally hundreds of other comments of support on both Facebook, messenger, mobile and my blog page. A huge thankyou.

This is the stats on my web page. Very telling that the support and interest and perhaps curiosity and care factor is high.

The Deputy Secretary of our Department rang me last night. It humanises bureaucracy when you have higher level executives contact you and offer whatever support there is. He said you are part of the family….whatever you need it’s there.

I did one of those silly Facebook quizzes that was on Julie B Facebook page today. This is what it came up with. I know that they are bullshit, as accurate as the horoscope or weather report but still…

But….I am not facing this alone. Many are concerned and worry if it could happen to them too. No symptoms.

I don’t think I have ever been accused of sugar coating anything lol, bluntness and directness is me, and has led to some misunderstanding me. I hate fake people and have a huge bullshit radar. I tend to be very efficient and organised, and that intimidates some but that says more about them too.

Yes and the last line is true. But it tends to take me getting burned a few times as I do forgive and give second chances. I believe in second chances. Third and fourth I start to take the hint and then look after me.

Today is the day I see the cardiologist to find out when the next step happens. I want it to be sooner than later as I cannot avoid it and want to do it before I have a significant event, that would either kill me or leave me with damaged heart muscle. Optimal recovery if I can go into as healthy as I am ( bar the diseased arteries)

Tony did not know what to buy me for my 60th. I’ll admit that deep down I wanted to make something of this 60th as I just had this niggling doubt in me. Based on what? I cannot explain it.

Anyhow I have been flitting around undecided. I was thinking of a ring and been getting prices etc, but I think I have decided on this. Made in Denmark, available in Hobart and it’s named….life.

Since 2018 I have worn a black band I bought at the Vatican. I’ll add this to my strength.

Time goes by slowly

Saturday July 2, 12.10 am

I can’t sleep. I shiver and shake in bed. I get up. It’s only midnight and my body says do a number two…at midnight! Whatever

I get up. I turn the heating up. I wrap a blanket around me. I make a hot cup of T2 peppermint tea.

I read all the lovely messages of hope and encouragement. Others share their stories. Some I’d forgotten about. Others are new stories.

I get a message saying membership declined for a cardiac rehab page. I had not applied so I answer the questions. Declined. Figure it’s because I’ve not been cleared to resume sport.

Sport….that activity that helps me sleep.

Will jigsaws cut it? I get one out but just can’t concentrate. I did most of my jigsaws last year. It sits opened on the dining table.

Tour de France has started but I do need figure sleep out as my body needs it and so must my heart.

I have a good heart in the non physical sense. A life time of volunteering in various ways. Mainly sports related. Currently I am also on a hospital advisory committee. One of two inaugural members still there from over six years ago. I volunteer leads for cyclists each week, around 7 hours worth as lead and/or backup.

I think about my first volunteering. It was with my dad. City of Launceston Lions Club did Meals on Wheels. Helping Dad on his roster was the only thing we really did together. He worked hard six days a week with his business. Sunday was his only day off.

I’d dish out the soup. He used to let me leave a small amount at the bottom of the thermos after all homes visited. That was for me.

I liked that time together.

It was clearly directly and very clearly indicated that my genetic disposition to heart disease was very strong and likely given the direct, close blood relatives who have a significant history.

He said you can control many factors that contribute – such as lifestyle choices (alcohol, smoking, diet, exercise) by what you do, and with the assistance of medications. The one thing you cannot change is genetic disposition. Bummer.

Saturday 5.10 am

Up and awake, still cannot sleep but I did get a few patches here and there. I practised deep breathing in and out. But my heart just seems to be banging hard. I feel like a ticking time bomb.

I’ve finished reading heaps of personal messages and responses to the blog. I’m teary and thankful to those kind people.

I am redoing my will. We had some changes we’ve talked about so typing it up. Might seem negative, but I want these changes in place. In case.

What does a 60 year old cardiac patient look like with minimal sleep under stress? That’s me. Not over weight and pretty fit and healthy most would presume.

My fitness is a facade that fooled specialists for years it seems. Here is a stressed looking Sharron, pre shower. I do not think I look like what many would typify as a standard cardiac patient. My physique fooled doctors.

Hoping bright colours cheers me 😊

Sunday am

I went for a walk yesterday afternoon with Tony and Khaleesi dog. Shaun P told me to! A nursing friend from Launceston, he has promised to boss me around. I’m happy for that. This was reinforced by a cardiologist who rang me who,said a walk should be fine.

Through Zwift I know Paul who is a cardiologist at the Royal in Hobart. My good friend Sue M had rung me despite her covid, and arranged it. She said she’d trust him with her life.

Great to talk to him and he explained more to me, and discussed his thoughts as to where the angio should be done. Agreeing with Sue his preference is Hobart and my cardiologist does have a list there (not sure how often). Reason is, Hobart has the only cardio thoracic unit in the state so if something goes amiss, I need be there vs Launceston.

The emergency air transfer service via helicopter struggling currently with one of the retrieval specialists and other staff out with Covid.

He told me if I needed more than three stents then it would be a look and see and no more and scheduled for open heart surgery. That is only done at the Royal. He described it as really nice surgery… the surgeons perspective versus the patient I guess. Normal day at the office for them vs life changing for the patient.

So the walk. Cold day. Only 10 c but clear sky and sunny. It felt good to have fresh sea air…..the heart goes tick, tick, tick….it was high tide so no beach to walk on but Khaleesi likes to sniff around in the rocks and logs. I found some shells for the garden. I filled up an unused doggy poo bag and carry them back.

I’ve tried to answer all the private messages sent to me via email and pm. So many and quite a few with their own cardiac story to tell. Many of the messages are very moving and I’ve shed many tears reading. The support is amazing. Thx kindly to all xxx

It is clear to me that many others have their own misdiagnosed stories. Fitness is a facade for many medical professionals it seems. My cardiologist was so reluctant to request this test and I feel he signed it to more get me out of his office…but I’m glad he did despite his reluctance. I wonder if he saw the results before he finished up on Friday?

We need to take more ownership of our health! Tony and I have decided once I am through this journey and on the road to recovery, he will push for this test.

I will push the issue with our local Federal member as it is ridiculous Medicare will only rebate with exhibited chest pain. I’ve had no symptoms yet the test revealed advanced coronary artery disease.

My daughter Hannah tagged me in this post on Instagram. I’m finishing this blog post with it. It’s 7.13 am, Sunday 3 July, 2022.

Taking life for granted

I’m starting up a new topic here on my blog as it seems I cannot ride for a while.

My family history with heart disease is significant. My maternal grand father died from cardiac issues aged 49.

My father had a five way bypass aged 51, my mother a three way bypass aged about 53.

I turned 60 a few weeks ago.

About 15 years ago calcifications were noted on my left coronary artery. An incidental finding from a lung imaging test. I saw an interventional cardiologist who said ‘you look too healthy, keep cholesterol low and goodbye”.

For 14 years I had tests every two years with a Launceston cardiologist. The stress test I treated as a personal challenge. I would ask what I scored last time, ensure I went further, and would be told that I was the fittest patient he’d had in six months.

I decided to change cardiologists. Good move.

After pushing to have a cardiac angiogram, where they use a contrasting dye, I have received news that has shocked me.

I have advanced coronary artery disease. They are in bad shape.

The radiologist was a gem. He rang me tonight and talked to me for over 30 minutes. He told me he knew me. He is a zwifter and rode in an event I was leading last week.

He has met with my cardiologist and they reviewed my results together this afternoon . There is a plan it seems.

Before I got this news, I hopped onto my bike and started peddling. The cardiologists rooms rang and told me to get off the bike. I cannot raise my heart rate.

This news stresses my heart. Exercise is my self treatment for anxiety.

Right now my health is number one. I need to nail this!!

I intend to diarise my journey. Not for sympathy but to encourage others to get this test, and to watch my rehab as encouragement.

Tony and I purchased our grave plot only two months ago. I do not intend to use it yet, and hope that the planned treatment is swift and successful.

The crazy part about this test is that there is no Medicare rebate unless you have chest pain. I have had no chest pain. I have no shortness of breathe. Yet the test has shown results that left untreated will kill me before I am ready to check out.

My motivation for this test was another zwifter, Andrew S. A fit and healthy guy who was heading to Scandinavia to ride, but collapsed whilst talking to his wife in the kitchen. She saved him with cpr and a few days later he had open heart surgery. Two months later he is back zwifting, and I note today rode 50 km.

He told me after his cardiac arrest, get this test given my family history.

I did and now I face major treatment fairly shortly that will hopefully save me before I have a significant cardiac event.

I am scared. I am motivated too as I have a long bucket list.

Get you heart checked out!

Love and hugs

Xxx