If there is one thing that drives me bonkers as a health advocate who believes in universal health care for all, it is knowing the benefits of certain welfare decisions in recovery from procedures, especially when involving the heart.
Think about it, you have surgery to your heart. I purposely did not use the word major, because any surgery to the heart is major, and traumatic. Yet, when it comes to the aftercare, a patient will fall into one of two categories, and there really should be only one. Should a patient undergo cardiac rehab after a heart surgery? Does a patient really need cardiac rehab?
It really should not be that hard. The answer to both questions should be “yes.” And yet, many patients get told they do not need cardiac rehab, or will not benefit from cardiac rehab. An almost automatic pass on cardiac rehab will come based on “youthfulness.” Having gone through cardiac rehab three times (yes, I have had three heart surgeries, qualifying for cardiac rehab each time), I can confirm with 100% certainty, I did not fit in with the demographic of other participants, averaging the age of 70 to 75 years old.
I was definitely told “no” following my open heart surgery back in 2008. And it was clearly laid on my youthful age of 42. I did what I do best, and advocated for myself, and was able to participate in cardiac rehab. My other periods of rehab following my other two heart surgeries were approved easily.
Here is why cardiac rehab is so important. First, you need to understand, any procedure to your heart, whether bypass, stent, valve replacement, or even transplant, is TRAUMATIC! While the issue may have been repaired, the heart is still fragile as a patient recovers. A patient should not expect or attempt to just return to normal activities, especially when it comes to working out. But if you are young, chances are pretty good, that will be the only reason you are not referred to cardiac rehab.
In cardiac rehab, the patient is connected to a heart monitor, where a nurse follows your heart and vitals on a screen while you work out on several pieces of equipment over a time period. A trainer, supervises you and creates a beginning work out plan, and over time, and depending on the results on the monitor, increases your efforts to help you restore physical fitness. And a nurse also walks around, at least once during the session, taking your blood pressure to relay back to the nurse behind the monitor screen. At least my last two rounds of cardiac rehab, I have had three people not only making sure that I recovered at a safe and healthy pace, but that my body was accepting the efforts as well. I have personally witnessed a patient being told to stop, because something on the monitor indicated something was wrong with him. And he was taken to the hospital. You do not get this kind of care, if you are left to your own efforts. And if you push too hard too fast, the end result could be tragic.
As far as I am concerned, there is only one reason not to do cardiac rehab. As it is expensive, of course, insurance is definitely helpful to be able to afford it. But then, this is where I believe in universal medical care for all. Everyone should have this critical recovery option available.
If you are lucky enough to be healthy, it is likely you have never had to worry about doctors more than perhaps an annual physical, treatment for a cold, or a vaccination. Chances are, if this is your situation, you would be more likely to go to the appointment with the relationship established as you being just the patient, and the doctor or nurse are the ones who know what is best, and you just accept whatever it is that they recommend. With the exception of the one little blip I had over 32 years ago with Hodgkin’s Lymphoma, I was rarely any challenge for my family doctor except for a seasonal allergy shot.
Once you cross over however to one of the more complex health issues such as severe injuries or chronic illnesses, there are two paths you face, and depending on the severity, it might just make a difference.
For examples, you suffer a broken arm, the doctor tells you that he will set it, and put it in a cast. Pretty cut and dry. You are the patient. You believe what the doctor is saying. And that is that.
Even when faced with something as serious as a diagnosis of cancer, the patient will always put their trust in the doctor. After all, we expect that with them having those important initials after their name. As long as we remain text book, we get diagnosed, treated, and recover.
But what happens when a page gets ripped out of the text book, and the doctor makes decisions based on everything, minus that one page, only to become a “likely” possibility as opposed to a firm diagnosis. Worse, when the situation is so unusual, and everything checks out, especially for someone “your age,” and there is nothing more that can be done, you are still adamant that something is wrong. You are no longer just a patient. You must become an advocate, your own advocate.
What does “advocate” mean? Coincidentally, a memory just popped up today in fact, and it is a great example.
This was a post I wrote nine years to the day. By this time, I had become well aware of the various health issues I face from my cancer treatments for Hodgkin’s Lymphoma. I was dealing with my second case of pneumonia, this time “double”, just nine months after a previous case of septic pneumonia. I am aware of a frequency among Hodgkin’s survivors, that those who develop pneumonia, develop multiple cases. But it only made sense to want to make sure I was at least mostly cured before releasing me from the hospital.
The hospital did release me the next day. I went straight to my family doctor who confirmed that I did still have pneumonia and took over my care from there, but agreed I would have recovered more quickly and thoroughly receiving the high dose antibiotics necessary through IV.
Advocating. It means sticking up for yourself when you think, feel, or know something is not right, and fighting for yourself. Have your ever heard a comment about a “bricklayer versus an engineer?” The engineer is assumed to be the smarter one with all the college experience and knowledge, yet it is the brick layer who has the hands on experience and knowledge. Which is more valuable? The engineer has no problem telling you that he does. The brick layer does not even give it a thought, just does what he must.
I have several causes that I advocate for, in general, adoption, health care, and cancer and survivorship. I advocate for myself, and for others. I am lucky that I have the teams of caregivers that I do, that I do not need to express myself as much, and why? Because I am included in the discussions that involve my care. But talk to me as if I am only a patient and have no say, we are going to have a problem.
However, with some of my issues, sometimes my advocacy, can make me go from my own best advocate, to my own worst enemy, especially when it comes to any of my multiple cardiac issues. I count on my doctors to explain to me clearly, everything that is at stake. I count on my doctors to make sure that if they have not gotten through to me, try again. Hopefully, time does not run out. And fortunately, this situation does not happen often, though admittedly it has on a few occasions.
As a certified “peer to peer” counselor in cancer for over 30 years, I have never given medical advice to a patient. No doubt, I have learned a lot about cancer, the different experiences, but the one thing I have never done, is told a patient what to do, especially override what a doctor wants to do. There is a huge difference between being an advocate for yourself, and delaying a decision that could cost you your life. In situations like this, time is often of the most importance. But if you find yourself in a difficult health crisis, and time does allow, then you can advocate yourself, to learn as much as you can about your situation whether it be by research or a second opinion. As long as it does not result in a negative outcome because of the efforts, then that was a good thing. That is what being your own advocate is about.
In one of the funniest Ivan Reitman movies, “Stripes,” a commander in the army, addressing recruits who had just finished basic training, spoke directly to a band of misfit recruits who, shall we say, struggled with the concept of basic training, and in spite of that, completed the training, “am I to understand that you completed your training on your own?” To which Bill Murray’s character barks back “that’s the fact, Jack!”
Over the last two years, we have been inundated with facts for any number of current affairs. One that personally affects me is the Covid19 pandemic. I have made it clear, that I do not rely on social media or main stream media for my decisions when it came to this crisis. Information that I relay, comes directly from the medical personnel that I deal with. Although I did have someone actually tell me I needed to find all new doctors because of the warnings I got from my doctors. These doctors had to be wrong or in with the “hoax.”
But it turns out, my doctors were correct. Their advice was accurate. The decisions that we, my doctors and I made as a team, were right.
The warning was stern for the new highly contagious and lethal virus spreading across the world, “if you get it, with the condition of your heart, it will kill you.” That was the caution urged by my cardiologist as well as all of my doctors who were in agreement. I did not need the news or Facebook to confirm anything. I had the best and most reliable resources. With no vaccine, no treatment, hell, not even any testing at the beginning, if I came down with Covid19, I was going to die.
Two things in my favor in getting through this, at least until testing and vaccines came along, I knew from prior working experience, how to deal with biological hazards. The other, the experience of having gone through so many other contagions, on two occasions, travelling right into “hot” areas (SARS and bird flu when adopting my daughters). Like all the other viruses, I knew that I had the intelligence and common sense to deal with, accept, and prevent me getting sick to the best of my abilities. The important thing was for me to get to the most important part, vaccines.
I lost my spleen back in 1989 while being diagnosed for Hodgkin’s Lymphoma. Long story short, over time I discovered that contrary to being told, being asplenic was no big deal, turned out it was. In the case of many vaccines, my body will not make antibodies as easily as it should, if at all. This had been confirmed previously with two other vaccines in my past.
While the development of the Covid19 vaccine was quite an amazing process, and while seemingly rapid, it was already previously being developed over prior years, there would still be red tape slowing the process down that needed to be overcome. Part of that process, is protocol, how many, how much, when, etc.
Once the vaccine was approved for emergency use authorization, it became a matter of who would be vaccinated first. Of course, the most vulnerable, the elderly and medical workers were first. Then came my category, the immune compromised and immune suppressed. My immune system is compromised by not having a spleen. So, “go get the shot.” Not so fast.
Remember, I know that my body reacts, or rather does not react as others who are otherwise healthy. The “protocol” for the vaccine, was one shot, followed by another several weeks later. That was it. What would happen if I got the two doses, and did not get the reaction needed? There was no protocol for additional doses. There was no protocol for a “do over.”
Having been involved in medical research and the medical community for as long as I have been, I know to expect more to come. And I had heard chatter that a 3rd dose was being researched. This was the news I was hoping to hear. But at that point, it was only chatter. I made the conscious decision, to continue my prevention behaviors while I wait for approval of that third dose. Again, long story short, that approval would come, but as a booster, administered six to eight months later. This was not exactly what I needed to hear to make my decision. I needed to hear “third scheduled dose,” in other words, weeks after the second dose. Eventually, that would happen.
Now as the title of my post states, “that’s the fact Jack!”, I admittedly took a big risk with not getting the vaccine as soon as I was approved based on my conditions being immune compromised. But knowing my medical history, it was a worthwhile and potentially life-saving guess.
The Leukemia Lymphoma Society had been studying the effects of Covid19 and the vaccines on blood cancer patients, of which Hodgkin’s Lymphoma is a blood cancer. Taking on the task, and relaying the results to the government (the CDC, the FDA, etc.), results were collected of the successes of the vaccines for those of us challenged by various circumstances.
The scientists at the LLS would have patients register, and submit to blood work, weeks after each dose to measure for antibodies from the vaccine, as well as to see if there was previous exposure. An additional blood test would follow at the six month mark, obviously to see if the coverage was still holding. And just like the vaccines were provided by the government, this blood test was covered by the LLS.
Now it was my turn to get the vaccine, and here are the facts.
Three weeks after receiving the first dose, I had zero antibodies from the vaccine. The good news it was also confirmed that I had not Covid19 antibodies either. In other words, I had never been exposed to it. So, it was bad news, good news. If my guess was right, and from what I saw with other immune compromised survivors, I should expect at least a little bump of a reaction.
And three weeks after that second dose, I did indeed get a small bump in the discovery of some antibodies. More good news, continued lack of exposure to Covid19 (pretty good considering where I live, in a pro-Covid state). The third dose was going to be a huge game changer for me. If I got the reaction that others had gotten, my antibodies would be 10 times higher than after the second dose. If not, it would not be catastrophic by any means, but not good news for sure, as I would have to rely on future vaccine developments.
The third dose was given a month after the second dose. The blood test was done three weeks later. It was confirmed, I had the anticipated reaction and the needed level of antibodies. As a bonus, still no exposure to Covid19.
So now I wait. As the healthy of you are told to get a booster due to waning coverage, you will get a third dose. If my coverage wanes, I have already had my third dose. I am hopeful though, as I am aware of studies of a fourth dose, and that would apply to me.
This is how science is supposed to work. Research, discover, apply, and believe in. It is heartbreaking the number of people not just believing the false information that is out there, or the conspiracy theories, but aggravating of the number of monsters out there promoting the erroneous information, and nothing is being done to stop it.
I know the current vaccines do not prevent infection. I know the current vaccines do not prevent spreading. And for that, we have to rely on all the things we were recommended to do from the beginning. It is frustrating, because had we all been on the same page back in the beginning, I do not believe we would have had over 800,000 dead Americans. The war cries of patriotism and tyranny all in effort to protect the health of our citizens was a false argument.
I have never lost any freedom by wearing a mask. I still support local businesses. And the only thing preventing me from going to a movie theater or concert ever again, has nothing to do with regulations, but rather the fact that we have so many pigs in our country that need to be told to wash their hands and cover their mouths/noses when they cough/sneeze.
Science says, we will continue to have variants because we did not shut Covid19 down when we had the chance, while there was still hope. And now, while we have vaccinated and unvaccinated, it is the unvaccinated we will continue to see roll the dice, with repeated infections, longer lasting effects, and more deaths.
I lost my younger sibling to Covid19 back in September. She made a foolish choice, and it cost her, her life. And if you had the chance to ask her before she came down with Covid19, I am sure she would have said, it was worth the risk as opposed to a side effect from the vaccine that could be dealt with. She got her answer.
As someone who never thought he would get cancer, never thought he would need heart surgery (let alone three of them), and countless other surgeries, do you really believe that something can’t happen to you, just because some nut job on a right wing network or social media says so?
Like I said, I have had to deal with my health, and viruses a long time. I know how to protect myself, through science. At this point, it will probably be another three years before we have Corona virus where it is manageable to where deaths will be the same as the flu, as opposed to the argument that Covid19 is no worse than the flu. Yes, yes Covid19 is worse than the flu, 16 times worse at least in deaths. And that is the fact, Jack.
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