It has been a while since I got "techie" about cardiology and what is going on with us. We have to keep reminding ourselves that our family is unique. It is not normal to have a 6 year old with a heart transplant and a Mom who deals with significant heart issues herself. We have many friends who are either one or the other. They are either a family dealing with a child with significant cardiac issues or a friend who is dealing with cardiac issues as an adult, but not both. Being "unique" is both a blessing and a curse.
Although we talk and post less about our health issues and how we manage, we are still very much very busy with all of our various clinic visits and endless follow ups. It has just become part of the ordinary. The new normal.
Because we see both pediatric and adult cardiology it also gives us a very unique perspective on how patients are treated in the pediatric world versus the adult world. It is a very different experience. In the future I am really NOT looking forward to being in the geriatric world as that is like being sent to the gulag as far as health care is concerned. Fortunately, that is many years away. Many...many years away.
Pediatrics, in general, has learned to be more patient centred out of necessity. Young children cannot speak and advocate for themselves and need an adult to be there for them. Actually, I should re-phrase that. Children can be effective communicators but sometimes it is just more difficult to interpret what they are saying and other times they are so clear you have to dial it down a notch. The family dynamic in peds forces doctors and nurses to be more in tune with what is going on not only with the patient but the whole family. When we are working with adult cardiology it is a completely different experience. You get half of the information and it seems far more structured. If you don't fall into specific parameters you can easily blow up "their" well conceived processes. With kids, to some extent, the staff can improvise and adapt based on the child or the family. In the adult world you must comply with the "program".
This is the challenge we have with adult cardiology. They are not flexible. Unfortunately, we break a lot of the preconceived ideas the cardiologists have about us. Susan in not in her 60's or 70's. When she was diagnosed with cardiomyopathy she was 38. Not the typical cardiac customer. She has no issues with blood pressure, retaining fluid, blocked arteries etc. If she shows up to Emergency with chest pain she is not having a heart attack. Her chest pain comes from pressure building up in the heart because her heart just can't squeeze all of the blood out. If some idiot were to give her nitro they could kill her. This throws most medical practitioners for a loop. She breaks almost all of the rules that you would assume of an adult with a heart problem.
When Susan has been admitted to hospital we try very hard (and without success) to ensure that she does not get the standard "low-salt" diet that they automatically assume she should be on. Susan does not have high blood pressure!!!!! Although a low-salt diet is healthy, the flavour, or lack thereof leaves a lot to be desired. So when the flavourless meal tray arrives, yours truly is immediately dispatched to the cafeteria, or local McDonalds, to retrieve a handful of those elusive salt packets. When I return to the cardiac ward with my pockets brimming with little white packets of salty goodness I feel like someone smuggling a file into a prison. The thought has crossed my mind to sell these little packets on the ward. Face it, salt on a cardiac ward is the equivalent of crack. Honest....I've never actually done it.
Low flavour food is a relatively small problem but is a symptom of bigger problems. I think what frustrates us most is the limited amount of information we get. We get treated like we are on a "need to know" basis and apparently we don't need to know. We are particularly sensitive to this because of Russell. His doctors share tons of info with us. In some cases possibly too much. We have been to "cardiac war" with these people and lived to tell the tale. We had one of the cardiologists from Edmonton come to one of our recent clinic visits. He was really intrigued by the fact that our son and his mother both had congenital heart defects. It is unique and i am sure the scientific mind got the better of him. We spent most of our pediatric appointment discussing the adult patient, Susan. He made the comment "so you are being seen by both pediatric and adult cardiology." It is quite shocking to think that in some ways we have gotten more information about Susan's condition from Russell's Doctors.
Don't get me wrong. Most of the cardiologists who have seen my wife have been very good and well
intentioned. They just don't know how to deal with us. We are kind of unique remember. Our last clinic visit started very strangely. Susan had just had an echo and we assumed we would be discussing the results. The Dr walked in and did the normal pleasantries. Then he asked a bizarre question. "Does anyone in your family have a heart transplant?" Susan and I started to laugh. We then explained..."why yes" "our son!" After the Dr collected himself and began to understand who he was dealing with; he dropped the topic and went on to the rest of the exam. Just a tip to any Dr reading this. Don't drop a loaded question like that on a patient and just leave it. As you could expect, at that point we were expecting bad news from the echo. The Dr shared the results and really didn't share anything earth shattering. It was a fairly normal clinic visit. It just left us wondering...why did he ask that question???
I guess the problem Susan's Drs have is that we are probably more informed than the average patient they see. We have a son with a heart transplant. I think they assume that we would be pushing for a transplant because that would solve all Susan's cardiac problems. If they talked to us they would realize that Susan knows what you have to go through to be listed for a transplant. In addition, the thought of another open heart surgery is not anything Susan has any interest in. The thought has crossed our minds many times. Why don't they just talk to us? We aren't that scary. We want to work with them but they insist at keeping us at arm's length. I don't understand that. I would think that scientists working in a health care environment would be curious about us and that we would be intriguing. We certainly are not dull. Unfortunately, there seems to be a "white coated" barrier between us and them. It is sad as I think many of these people could become better doctors if they just let their guard down and treated us like a human and not a "case." They can learn lots from their patients if they really engaged them.