I am a veteran of the anxiety wars. By the time I was 30, I realized that I tend to worry about things. As I took on progressively responsible positions in my career, I knew that the stress on my job would only increase over time. I also knew that worrying about things that either (1) I could not control or (2) were unlikely to happen could derail my ability to be decisive not only in my career but in the personal sector of my life.
I knew I had to get the worry gene under control or the impact of the ensuing anxiety would be disastrous. As I recall, I read several good books on techniques to manage the stress so that I did not begin to obsess over red herrings. I did really well for a number of years. But then heart failure came knocking on my door.
I have mentioned a number of times that I am enrolled in the Entresto Central Support Program. This program is sponsored by Novartis, the manufacturer of the new heart failure drug known as Entresto. The program pays most of my co-payment for this new drug, which is a substantial amount when compared to my other co-payments.
The program also generates snail mail and e-mail correspondence to me that contains a lot of helpful tips about things like diet, exercise, the benefits of getting into a routine, organizing and taking your meds, etc. So I was intrigued by a recent e-mail from the program appeared in my inbox. The subject was: Staying Positive Can Help Maintain Progress.
For those chronic illness patients who have a family member as a part-time or full-time caregiver, it is a relief to know that your care is in the hands of someone who knows you and has your best interests at heart. But sometimes it can be stressful to think of the added mental and physical workload that is now resting on the shoulders of your loved one.
I do not have a caregiver. I am fortunate to be living independently and can manage my own finances, engage in volunteer activities, manage my medicines, get a lot of exercise and prepare my meals without help. But there are some occasions where I need to have the support of friends and family members. I am familiar with the nagging feeling in my mind about whether I am asking too much, always concerned that am putting a strain on those in my extended support network.
One thing I love about a blog is that I can edit things. Whether it be on a piece of paper I have scribbled on, or a computer with typed commentary, I have the ability to cross out, erase, or backspace through to edit and refine the language. The story always becomes something that I can take pride in.
I can’t say I take much pride in how I have handled the events of the last few weeks. As background, this summer challenged my allergies and sinuses. I either had watery eyes and a runny nose, or I was fighting aches in all of my sinus cavities. I think the really bizarre weather helped create an environment that made being outside a misery. When you fight shortness of breath due to heart failure, it doesn’t help that your respiratory system is plagued with allergies and sinus headaches or drainage.
On Sunday, October 6, 2019, the Washington Post Magazine had an article that is the most memorable and touching article I have read in a long time. It is one story in a book to be published October 22 called “One Day”. The premise is that the author asked 3 separate individuals to pull 3 separate pieces of paper out of a hat and together they pulled the one day that he would write about: December 28, 1986. The author then conducted research to in his words: “explore whether, in the insistent gyre of human experience, there even is such a thing as “an ordinary day.”
The story in the Washington Post Magazine was called The Beating Heart, and presented a multi-faceted view of a heart transplant operation that of course recounted the medical side of the story. But The Beating Heart also portrayed the very human account of how a tragic series of events led to a Northern Virginia hospital’s first heart transplant in a woman who was and still is (after more than 30 years), an admirable and wise and vital person.
I recently returned to the place where I spent 30 years of my career. I had not been there for six years, but people still knew who I was – YAY!
Unfortunately, those people also wanted to know what was going on in my life. I could have just said – Oh, I do a lot of volunteer work. But that wouldn’t be sincere, and I also want to be open with people so that they know that you can still have a life and be optimistic when you have a chronic disease. So I have adopted the RUST approach to updating friends, family and colleagues: Remain Upbeat, Simple and True.
I am on a two-month break from my heart doctors and have been using the time to see some other health care providers. Yay! Not that I don’t love my doctors and nurses, but if there is an extended time between appointments, in my mind that says I am still doing okay.
I still have the rest of my body to look after, so I use the time to catch up on other doctor appointments. In one of those appointments, I was talking with a physician’s assistant about an over-the-counter medication she had previously recommended for a non-heart related medical issue .
I am always looking for solutions that will raise my low blood pressure and raise the amount of potassium I can include in my daily diet. These are two factors that my doctors monitor (or have me monitor) on a frequent basis.
Since a number of the drugs that I take cause a decrease in blood pressure and an intake in blood potassium levels, that would seem to be an easy fix, right? You just decrease or eliminate a drug that to you doesn’t seem to be doing much for you. To my non-medical mind, it seems to pose little or no risk to implement, and then voila – problem on the way to being solved.
Having been diagnosed with heart failure approximately six years ago, it does sometimes feel like the diagnosis was more of a sentence to a very strict prison facility. There is no right of appeal, and sometimes you feel so lonely it’s almost as though they put you in the ward for solitary confinement. I suspect other patients with chronic illnesses often feel the same way.
You see, our prison guard is named chronic, a guard that has endured throughout the ages. This is appropriate when you consider that the word “chronic” according to the Oxford Dictionaries means: persisting for a long time or constantly recurring. Your illness may get better for a while, or medications and treatments may help you adjust to the symptoms a little better. But then another symptom enters your prison cell, or a previously reformed symptom is allowed back into the cell. Before you can blink, chronic will triumphantly shut the cell door with a resounding bang.
When it comes to managing heart failure, I think the concept of tolerance plays a significant role in how much success you will achieve. Bear in mind that the word tolerance has a number of definitions, and so there are a number of aspects of tolerance that will contribute to better management of your condition.
The first definition that the Merriam Webster Dictionary website provides is: the capacity to endure pain or hardship: endurance, fortitude and stamina. So this definition pertains to heart failure management in the following ways. First, it is a health condition that will cause you a lot of hardship in your life that will likely increase as time passes. Examples are shortness of breath, fatigue, confusion, strict diet and fluid restrictions, and anxiety. The best way I have found to handle these hardships is with a reality check. They aren’t going away absent a miracle cure. But if I am really vigilant with medication and good habits then my ability to endure this hardship increases. Or in other words, I learn how to tolerate the hardships better and they become less intimidating.
Melanie discovered that she had heart failure in 2013. Since that time, she has been learning how to live with the condition, and how to achieve balance and personal growth.