I’ve been living with a life-threatening condition since 1984. It is anaphylaxis, and with extreme diligence I’ve survived thus far. It has altered the way I live my life, no restaurants, no pot luck dinners, no enjoying homemade food gifts, and worst of all, the allergen is a non-medicinal ingredient in some medications, making human error in health care a real and serious concern. Twice I’ve faced the danger of death in a dentist’s office, not pleasant experiences. I’ve lived with this so long that precautions are second nature, in our home we don’t even think about it because we follow the protocols that I have established for safety.
But there is a new threat in my life, a new life-threatening health condition, and this one is not so easy to control, and not so easy to live with… perhaps in part because it is relatively new to me. It is an aneurysm. It was discovered during a CT scan for another health issue. The Nurse Practitioner thought it so insignificant that she didn’t mention it to me, and had I not had procured access to my test results I would not have known it was there.
At first it was small. Even though it was not an immediate threat I insisted on being referred to a vascular surgeon. The Nurse Practitioner did not think that was necessary, but I am VERY accustomed to advocating for myself as a result of anaphylaxis, so I insisted. I had a consultation with the vascular surgeon, which was very helpful, he answered all of my questions with patience. I am now under his care for this issue.
I was told by my nurse practitioner, my vascular surgeon, and an emergency room doctor that this aneurysm was nothing to worry about, and it would probably never grow large enough for surgery to be needed.
They were all wrong.
Luckily, when first diagnosed, I set out on a journey to learn as much as I could about this condition.
The first thing I learned was that I was extremely lucky to know it is there. There are no symptoms, and if an aneurysm ruptures there is little chance of survival, so that if it undiagnosed, appropriate treatment comes too late in the game to safe a life. Diagnosed, there is a better chance that the emergency surgery will be performed, but even then, survival is rare.
The next thing I learned is that very little is researched about lifestyle with this condition. How much can you lift, what exercises should you avoid, what should you be eating. There is however a lot of research into the efficacy of drugs to control high blood pressure and cholesterol for this condition. Navigating this complex maze is a whole new experience for me. Medications aren’t working as well as they need to, leading to a referral to the endocrinologist, which is vital in my case, but there is a two year waiting list, even for serious conditions like mine. The list of challenges goes on. It isn’t a lot of fun dealing with this, so I write everything down and keep copies in various places and formats. I haven’t really come to terms with it completely, but I will say that most of my days are pleasant and pain free.
We have put some measures into place. I don’t lift anything over ten pounds, which complicates life, as our lifestyle is predicated on activities that involve a lot of lifting. So I have to stall an activity that involves lifting, until Attila is free to help me. I don’t do exercises that involve twisting my torso. I don’t do activities that involve repetitive vibration, so using the electric trimmer is off my list. I can’t haul brush out of the bush anymore, or break up dead branches to feed the campfire. Sure I am capable of doing all those things, but this is not something you can soldier through.
My chances of survival are unknown. The aneurysm has grown significantly in 12 months, surprising everyone, and shocking me after being advised so assertively that it was not going to be a problem. If it continues to grow at this rate, I will probably find myself in surgery within a year and half. Worst case scenario is that it grows ever more rapidly, and I experience a rupture before surgery is performed. It is a horrendously painful way to die, that is not lost on me.
If I make it to surgery, there are two possibilities, EVAR or open surgery. EVAR has a great survival rate, is relatively non-intrusive, can need subsequent repair or replacement, and has a quick recovery rate. So far the surgeon thinks I will be a suitable candidate for EVAR. That may or may not be the case when if I reach a stage to have surgery. The second option, open surgery, is extremely intrusive, requiring a large incision in the abdomen. Recovery time is long and painful, and the results are usually permanently effective.
Attila and I have been talking about the situation at length. We have identified our concerns as: needing more time together, and my need for support and transportation going forward with this issue.
We feel that although Attila is years away from being able to retire, and receive the government pensions, early retirement might be appropriate under the circumstances.
Our financial situation would suffer. We would have to survive on my government pensions, which will not cover the basic bills. We have survived extreme financial disruptions before, when we both lost our jobs in 2004 and spent a winter without any income, and only a little wood stove to heat our home. Then once more, during the Covid quarantine, when our income was greatly reduced, and did not cover our bills. We feel that although we would again find it difficult to adjust to such reduced circumstances, we would find a way to stay afloat.
We haven’t made a decision yet, as we are still trying to look at our future course of action from every angle we can think of.
For me, what it always seems to come back to is, having the comfort of support when I need it, spending quality time with Attila, and watching Attila recover from decades of stress in toxic workplaces.
My health is my little black cloud. It is in sight. But it is only a small part of the view, all around it is blue sky, and that is where my gaze wanders.
Worldly
Weather
Updated on Mon, Nov 20 at 10:15 AM
-4°C
FEELS LIKE -9
Clear
Wind 12 NE km/h
Humidity 70 %
Visibility 23 km
Sunrise 7:09 AM
Wind gust 18 km/h
Pressure 103.1 kPa
Ceiling 9100 m
Sunset 4:37 PM
Quote
“Love yourself first and everything else falls into line. You really have to love yourself to get anything done in this world.”
Lucille Ball
1911 – 1989
Lucille Ball’s life was very different than mine, but we have one thing in common that I am sure of, she had the same type of aneurysm that I do. So did John Ritter, so did Albert Einstein…
Maggie, I’m sad for you that you have the aneurysm and I’m angry on your behalf that the Canadian health system has deteriorated to the point that you have such a challenge in getting proper treatment for it. Sending good vibes and healthy thoughts your way.
Wendy, thank you for your good wishes and kind thoughts Wendy!
It is a bit of a rough time to have health issues in Ontario, all of Canada from what I’ve read. There are even businesses opening up that you pay to advocate for you, which is very sad, and will not be part of our journey. Hopefully the health care situation will improve!!
Educating myself has turned out to be highly beneficial, I am my own advocate!
I am shocked that you have to wait two years to see an endocrinologist!! Especially with the seriousness of having an aneurysm. Keeping you in my prayers and hoping that by some miracle things start falling into place so you can have whatever you need to survive this. Hugs and healing thoughts heading your way.
Maggie I’m sorry you’re faced with this new health challenge. I’m also shocked you have to wait that long to see an endocrinologist. Since the aneurysm is small but growing, why does your doctor not want to operate now (if that’s an option you would like)? As far as the financial challenge,I don’t know if you’d be interested in teaching English online. The pay is .17 cents a talk minute which is $10.20 an hour. But not many get 100% talk time with students. Just an option to think about. I’m sending you prayers and positive energy and big big HUGS. <3
Eileen, I was shocked too, and I would not have known had I not called the vascular surgeon’s office, they were the ones that kept me informed. The Nurse Practitioner was shocked too, and the clinic is trying to find an alternative, maybe a heart clinic that specializes in lipid conditions. I have some kind of hereditary condition, this runs in my family, my Grandmother, my Aunts, my Sisters all were/are affected.
Our system works for those with access, but increasingly the general populace, who pay big taxes to fund the health care system, are not getting access to it, and increasingly our tax dollars are being siphoned off into private health care for the affluent, which many, probably most, of us can’t afford. Anyway, the system is broken in my opinion, the health care workers do an amazing job within the conditions the government is setting up.
Thank you for your prayers, hugs!
Things might fall into place, might not, there is no way to predict. So we are considering the worst case scenario, as our trust in the health care system is deteriorating rapidly.
In the meantime I am doing what I can to remain as healthy as I can, that can’t hurt, might not help, but it sure cannot hurt.
Sandy, I think the option for surgery is based on size, and that the funding for surgery is therefore based on size. My aneurysm grew almost a cm by the second scan, a year apart, and is has not yet reached the threshold size for surgery at 5 cm for women. This seems to be the guideline in North America, and in the UK. Apparently they seldom rupture (and kill) before they reach 5 cm. and the surgery is deemed dangerous enough that at 5 cm your chances of survival from rupture or surgery are equal. It doesn’t make much sense to me, as the EVAR is said to be very safe, so why wait until there is a real chance of rupture, and why wait when it is possible to experience a rupture before reaching 5 cm? It isn’t making much sense to me, but I have to live with the guidelines, even though I suspect they are antiquated and refer only to open surgery, which is risky and intrusive. At the rate my aneurysm is growing I’ll be at the point where I can access surgery in a year or so. I will be scanned again in six months, so we will know more about my situation then.
Thanks for the tip re teaching English, definitely something to consider, and I will be adding that to our considerations as we map our course of action!
Hugs
I hope that the delay in seeing an endocrinologist doesn’t effect the timing of your surgery in any way. I’m sorry you have to live with such constant uncertainty. It’s wrong that the government takes people’s money but then leaves them with basically no options.
Maybe Attila could switch to a part time job somewhere instead of quitting working altogether? One good thing about covid, it seems to have freed up lots of jobs all over the place.
*hugs*
I was looking for Ontario guidelines for surgery and came upon this general guideline. Maybe something you could push with?
“A small AAA that gets to be 5.5 cm or larger, or that expands more than 0.5 cm over a six-month period of time, should probably be repaired surgically, if possible.”
Teri, the endocrinologist may be able to slow the growth of the aneurysm, the vascular surgeon is now quite firm that I have to lower cholesterol and triglycerides, but the meds haven’t been working and/or haven’t been tolerated. There are other med options, I am trying one right now, will know before Christmas if it is doing any good. Then there are two more options to try if that isn’t helping. But there is no way to know what has accelerated the growth of the aneurysm, it certainly isn’t anything I am doing in my day to day lifestyle. Attila is thinking about part time closer to home, so we shall see, it is a good idea!
Teri, thanks so much for the info on the surgery, the 5.5 is for males only, women are 5.0 cm. I didn’t know about the .5 cm growth over six months, I could be looking at surgery a lot sooner than I originally thought. But that isn’t necessarily a bad thing. Do you have a link to that information?
https://www.uptodate.com/contents/abdominal-aortic-aneurysm-beyond-the-basics/print#:~:text=A%20small%20AAA%20that%20gets,’Surgical%20repair’%20below.)
The link broke but it will still get you there.
I think healthcare is broken almost everywhere. What we learned with my Aunt’s illness is that seeing a specia;ist required waiting months, even if your health suffered. Also, in the US someoptions like surgery or certain medications are not offered i you’re over a certain age. I can send you the link info for Cambly (the teaching site) if you’d like it. Hugs back to you!
Teri, thank you! The link did get me there, great resource and some new info for me.
Sandy, that is sad to hear, this broken health care systems aren’t the best thing to have in common. I don’t know all the ins and outs of the surgery, but hopefully my life will be deemed worth saving when the time comes for surgery. Thank you for the offer of the link to Cambly, so sweet!
I sure hope you can get in sooner to see the endocrinologist much sooner than two years! Many prayers for you! <3
Thank you Joan! While I wait, not so pariently, I will be looking at the medical journals and pushing for treatments the Nurse Practitioner can prescribe, if that fails I’ll be on to alternative medicine solutions. Not giving up. 🙂