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.
Updated on Mon, Nov 20 at 10:15 AM
FEELS LIKE -9
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
“Love yourself first and everything else falls into line. You really have to love yourself to get anything done in this world.”
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…