Living with heart failure

2004; our family expands with the birth of our son. It is great; the three of us are one little happy family. We have a house, jobs, two dogs and now also a little boy called Sem.

A few months later my wife (Rona, 31 years old at the time) doesn’t feel well. She is very tired but that isn’t something new. Every now and then she has these periods due to heart problems at birth. Most of her life this doesn’t cause any problems and she can do the same things as others. So a few days rest will probably do. But a few days will become a few weeks.

It doesn’t feel right, Rona is very tired and has many arrhythmias. We decide to call our cardiologist in the hospital. This is the beginning of a period with several diagnoses and treatments. The cardiologist is trying things, but it isn’t helping. So one day he says: “perhaps you should stop whining and do more sports “. This is odd. At first sports are out of the question and now she must do more sports?

Rona feels miserable. She can’t take care of our son as she has imagined. Getting started in the morning takes all of her energy and after that she lays down for an hour on the sofa. What is that doctor thinking? Perhaps worse is the fact that friends, colleagues and family are starting to let her down. Suggesting it is a mental problem. I see her struggling day-to-day. She trying to keep things going, but unable to attend a party for two hours (this often takes a few days of recovery).

In the next months her condition only gets worse and during another visit to the cardiologist he proposes to do new examinations, but it are the same examinations as before. This is the point that we loose our last confidence in this cardiologist and hospital. After 18 months of struggling we decide to visit another hospital. The new hospital and cardiologist are a relieve but also a slap in the face. After the first examinations she tells us two things:

1) During the first examination the doctors saw serious defects in the heart and surgery is needed quite quickly.

2) Our first hospital could have helped us much sooner, but the doctors have a conflict with each other so they don’t refer patients to specialized doctors who can help them.

The new hospital is great. They are supporting us as much as they can. Surgery went well, but after surgery the doctor says that they shouldn’t have waited much longer. It turns out that one valve was about to break and that would have killed her.

Sem (3 years at the time) is missing his mom and I’m trying to be there for him as much as I can but I also want to be in the hospital. I’m hoping that Rona can come home quickly, but a few days after surgery she gets complications. The first hours after the complications are feeling endless and it would take a few weeks takes to stabilize her condition.

At this time many people are quite shocked about her situation. Finally they see that it isn’t a mental problem.

After coming home, Rona recovers quickly and one month later she can do more than she could in the past two years. A mile walk doesn’t feel like a marathon any more.

Another month later.

What is happening? All the progress seems be disappearing. Back to the hospital, new examinations and new problems: heart failure.

(For the people who are not familiar with heart failure.Heart failure is when the heart can’t keep up with its workload. If the heart muscle cannot pump enough blood, it cannot meet the body’s needs for blood and oxygen. Heart failure is a common, costly, disabling, and potentially deadly condition. Heart failure occurs mostly with elderly people and the doctors can’t say much about the development for younger people.)

The doctor tells us that they can try to improve quality of life with medication, but Rona will never recover from heart failure. As you can imagine, this is quit a shock for us.

Starting medication seems easy but it takes all most a year before you are experiencing the benefits. Now, 5 - 6 years later, we have finally reached a stable condition, but it isn’t always easy. Her condition changes throughout the year and the average person of 68 years old is probably capable of doing more than Rona.

After surgery I thought that people would have more respect for Rona, but that turned out to be one big disappointment. That struggle started all over again. People still didn’t believe that she was unable to do the things others do. Over the years only one of her friends supported her during all these years. Others, including her family, just let her down. People didn’t believe her or so called friends told her she should pay more attention to her friends. But how? There are times that getting dressed in the morning is a great challenge and that a half a mile walk seems to be endless.

I still don’t understand the selfishness that many people have.

But so far for the misery, because there is also a happy side to this story!

Rona started painting, illustrating and much more. People are now asking her to do illustrations and designing. Within a few months form now a third book that has been illustrated by her will be in stores. This helps her to forget all the things that she can’t do anymore. It is great to see her enjoying life at these moments.

And what did I do?

I decided to quit the daily traffic horror in the morning and took another job. Now I’m starting my working day at home so that Rona can have a smooth start in the morning. Sem loves the fact that mom and dad are around much. Before school and work starts we have breakfast together and the two of us play basketball. We have a non stress and fun beginning of the day and I wouldn‘t trade it for the world.

For now the end of the story is that our future is quit uncertain, but we have learned to enjoy life much more, we dumped all the “must do’s” that people have and we are just doing the things we love. We are one happy family!