Paul's Heart

Life As A Dad, And A Survivor

Archive for the month “October, 2023”

18 Oct 2023

Takes A Licking


A few stories came across my feed this morning from pages that I support in regard to heart surgery survivors. Though it has been over fifteen years since my emergency open heart surgery to perform a double bypass, I recall every detail as it if happened only yesterday (much to the dismay of those in my life frustrated by my inability to remember five minutes ago).

The first deals with aftercare, as in one of the first things upon discharge, or just before discharge. There is a huge scar in the middle of the chest now, protected by a bandage or sometimes called a dressing. Under normal conditions, when a patient returns home, there is most likely going to be a visiting nurse for the first week, just to make sure the incision is healing properly, and vitals (blood pressure, pulse) are still doing well.

This particular survivor’s dressing had not been removed prior to departing the hospital, so it was planned to be removed with the visiting nurse’s first visit. The nurse never came. And as most wounds heal, they have a tendency to itch, and the survivor became an impatient patient, wanting to remove the bandage on her own.

To many, this would seem an easy thing to resolve, but to someone recently dealing with the recent trauma of heart surgery, we look for either reassurance or direction. There is a reason a health professional should be the one to remove the dressing, and that is mainly, to examine the incision. While a patient looking out their chest wound may feel confident that all looks fine, a trained professional should be the one to make that call. The last thing that needs to happen is to have an infection develop, which would only lead to things worse than the heart surgery itself.

For me it was simple, make a call to the surgeon’s office, or cardiologist, and make them aware of the “no show” nurse. While the doctor may feel it is okay to remove the bandage yourself, there is still the need for the patient to be seen while recovering at home.

As we recover from heart surgery, there are many adjustments that need to be made, some immediately, like sleeping positions, and some over time, such as diet and activities. The next two situations deal with this.

One patient who is seven weeks post surgery, has thoughts on the upcoming Winter holiday season, which will mean a lengthy drive, both ways for them. While this is still two months away, comfort of the chest and overall comfort can still be a legitimate concern.

My ride home from the hospital was an hour long, bumpy and shaky ride. I often felt like riding in a covered wagon on a dirt road would have been a smoother ride. But travelling a couple months, while might still involve comfort, tolerance by the rest of the body could be an issue. Full recovery from open heart surgery, is not usually considered until three months, and that is when it is followed by cardiac rehab, possibly physical rehab. And honestly, you do not need to have gone through heart surgery to experience the fatigue of not just a two hour drive one way, but a two hour drive back, all in the same day.

There is a fairly good chance, that the patient will be fine, perhaps nothing more than a bit more tired, and then hopefully be allowed the opportunity to get the additional rest needed. But there is also a chance, that this kind of trip might still be too much to handle. I did make the recommendation that if they can, use the “heart” pillow they were given, to place it between the seatbelt and their chest to provide some cushion. Ultimately, it might even be a gameday decision whether or not to make that trip, and under no circumstances should they feel guilty if that morning they decide, it is just too much.

The final story is a bit more extreme, and unfortunate. While I disagree with the way the patient/survivor is acting, I do feel that his care team should have done more at least in the beginning.

When anyone undergoes a major lifesaving surgery, regardless what it is, it often gets referred to as a second chance at life. For some of us, we may need third, fourth, fifth or more, depending on the circumstances. Regardless, following this surgery, it is supposed to be about appreciation for something almost taken away, a desire to do things differently, a “want” to live.

The writer expressed that her husband had just passed seven years from a quadruple bypass. In spite of this effort to save his life, he chose not to give up smoking, drinking, and refused to take any of the medications given to aid his recovery and help his longevity. The day before she wrote, he was in bad enough pain, that he “dropped to his knees.” He uses a nitro “spray” at least twice a week and has been exhibiting other symptoms. These things alone are concerning enough to go to the ER for attention.

Instead, she was focused on a “Pandora’s Box” question, how long the bypass would hold up, and was told by the doctor that likely ten years. To be honest, doctors generally will not give a time frame, at least not exact, because every situation is different. Mine for instance was over fifteen years ago, and is still quite patent, meaning I have many more years yet. But his health is bad enough, that she is concerned with his lack of compliance to do what was in his best interest, might he actually have less than ten years. He refuses to be seen by doctors. Some of the replies she is getting are quite harsh, not what she needs to be hearing, though truthful, his seeming lack of appreciation for a second shot at life.

There is a key component to his case. I see no mention of any emotional support. And as anyone who has undergone open heart surgery, the emotional issues that arise, in nearly everyone, need to be addressed on some level at some point. And it is clear that his were not. And it is unfortunate that he simply chooses to have his wife and caregiver suffer emotionally as well. His outlook clearly is not good.

It has been over 15 years since my first heart surgery. It was four years ago since my second heart surgery, and tomorrow marks the 2nd anniversary of my third heart surgery, to replace my aortic valve.

If I lived my life by “how long” each surgery will last, I had already passed the first surgery, and have six years for the second, and five years for the third. But here is the thing. I am not throwing away the chances given to me to live as long as I can. There are so many counting on me, and they mean everything to me and I would never want to hurt them by not giving a damn. That is not to say, that even doing the right things is guaranteed to get me the maximum time, then again, it could get me longer. But it starts with me, having an appreciation for the efforts made, on multiple times, to save my life.

Posted in Cancer, Education, Family and Friends, Inspired By..., Side Effects, The Heart | Leave a comment
12 Oct 2023

A Child’s Grief


Sad news came less than a week ago. A close friend of mine, more like a brother to me, passed away. He was sixty-three years old. As the picture above, from over fifteen years ago suggests, he was clearly too young. He had been diagnosed with ALS, Lou Gehrig’s Disease earlier in the year, which progressed rapidly. It is difficult to feel anything less than relief for someone who’s fight against ALS comes to an end, because the progression and results of the disease are just so cruel. Nonetheless, all who knew him, and care about his loved ones, are devastated by the loss.

This is actually the fourth time in less than twelve years that I have lost someone close to me from ALS, and the second time for my daughters. They lost their Uncle Mike, my brother-in-law back in 2012 to ALS. The two others that had passed away were friends, a co-worker, and a school board campaign running mate. Three out of the four, all had young children or barely adult age, when their fathers passed away.

All of these men left wives behind, again, three of them to not only grieve the loss of their soul mates and best friends, but also to provide support for their young, grieving children. My brother-in-law’s daughter was in her mid teens, my campaign running mates children were not even teenagers, and the small children pictured above are now in their early twenties.

For me personally, I had not experienced the loss of a parent until nine years ago with the passing of my father from lung cancer. I was in my later forties at the time. I know the loss that I still carry today following our unique history with each other, with me wishing I could have had more time to make up for time lost in my childhood.

My daughters do not know this level of grief. However, both of them do have several friends throughout their childhood who have experienced a parent’s death, whether suddenly or following an illness. My children have been taught empathy and always gave that whenever any circumstance came up that was hard for one of their friends. And as I said, their Uncle Mike passed away before they were ten, so they do not recall how difficult it had been for him in his fight against ALS.

But for Chris, there is a special bond with my one daughter, though both of my daughters have always been treated equally as family by he and his wife. My older daughter had been adopted together with their younger daughter, as we travelled together. And I made sure that my children stayed in touch with them throughout their childhood, through visits and reunions. The picture above is just one memory of many that my daughters are able to remember him during a time that was much happier.

It cannot be helped however, that my mind retreats to a very dark place every time someone in my life passes away, especially when there are young children involved. My health has been a struggle for years, with one health crisis after another, life threatening, two near fatal events. As I dealt with the first one, a “widow maker” heart blockage, that resulted in the statement from my cardiologist, “it wasn’t a question if you were going to die, but when,” referencing the imminent fatal heart attack that could have happened. My main thought used to be at one time, “what would my employer do without me? They need me,” trying to stall or prevent the corrective surgery. Following that emergency bypass surgery, I found out. They carried on without me. And when I recovered, and returned to work, it was business as usual. But clearly, they had done without me.

Reality had set in however, when told that I was that close to death. Work may have been able to get on without me, but my daughters were five and three years old at the time. That is when it sunk in, the pain that they would have had to endure, without me in their lives. Unfortunately, this scenario has played out so many times now, and fortunately my daughters still do not have to deal with that type of loss. And as my friends are now dealing with the loss of her husband, their father, I know my daughters are thinking of all of them, while at the same time realizing how serious their father’s health is, and not to take any time for granted.

I have had many over the years tell me that I am depress them thinking about death all of the time. That I “could be killed tomorrow crossing the street.” I am sure you have heard that expression. And while that possibility may be true, there is one main difference. A person that says that, does not have someone “pushing them into the path of the car,” making reference to the conditions of my body, being so compromised from the cancer treatments I went through years ago.

Studies have shown, survivors of Hodgkin’s Lymphoma treated decades ago, like me, have bodies that are internally artificially accelerated in age, by twenty to thirty years. To put that into perspective, I am sure you have heard comments like “smoking takes away so many years” or “eating a diet high in fat decreases life expectancy”. My cancer survival is the same way.

The fate of my fellow survivors occurs one in three ways. The first, those who have no idea what is causing their unusual health issues, because they were never told of their likely late side effects. The second, those who faced one corrective surgery after another, and then one too many, impossible to overcome complications. And the third, those whose bodies simply had enough. This just recently happened with one of my fellow survivors I just wrote about. Though she dealt with several issues, she had not felt anything imminent, and proceeded on a vacation, when she suddenly passed away. I am not in the first category, and so far, I have gotten through all of my surgical procedures and health events. Which can only leave me wondering, if I might be in that third possibility.

So that brings me back to my friend, and those others who passed from ALS. There was a time, I honestly thought I would have outlived them. And they would then be comforting my daughters.

Getting back to the comment about me “thinking about death all the time.” No, I don’t. I think about living, all the time. In order to do that, I need to do two things. The first, I need to listen to my doctors treating all of these issues, and follow their recommendations. The second thing, I have goals driving me, and of course they are associated with my daughters. It has not been easy getting to each, but I have done so, and there are so many more that I want to be around for. So no, I don’t think about death all of the time. I think about living. I live for my daughters because I am arrogant to believe that I can prevent them from the hurt of grief, though I know I have no control of my fate. That much is clear.

My heart is heavy not only for my friend’s wife, but for his two daughters. The hurt I have for my father I am sure pales in comparison to what they are feeling this evening, having only such a short time with their father, and so much more to experience in their lives. I wish there were more than just words to help them during this difficult time. But as one comment that I have made to them, there are just so many great memories and stories that I have of my friend, that while his passing was indeed tragic, it will not be the end that dominates our hearts as time goes on, but rather all the good times we shared.

But you will definitely be missed my friend.

Posted in Cancer, Education, Family and Friends, Inspired By..., Recreation, Side Effects, The Heart | Leave a comment
08 Oct 2023

The Whole Tooth, And Nothing But The Tooth


If there is one thing that does not get near enough attention for cancer patients and survivors, it is proper dental care. Sure, during the active treatments, extra precautions are often suggested, or even delaying cleanings and other procedures. But what about long after treatments, radiation or chemotherapy, should a cancer survivor be concerned about? The answer… a lot? It makes sense to wonder “but why? I am not dealing with cancer anymore.” If you have followed me long enough, you know time means nothing, when it comes to potential late side effects developing. No, these health issues are not guaranteed to come up for everyone, but they need to be watched for. And it does include the teeth.

As is often the case, a post on one of my feeds prompted this post, an opportunity to explain “why?”. The writer is experiencing an issue many of us who have been exposed to radiation therapy also deal with, the degradation of the teeth and jaw. For those unfamiliar with cancer and its treatments, patients are advised on the potential issues faced during and after cancer treatments. Dental issues are rarely, if ever discussed. But the truth is, they are more common than not.

The next three slides are from the “Survivorship Guidelines” of the Children’s Oncology Group. It is a very comprehensive guide covering aspects of the various treatments and potential issues. It may not cover every cancer, and it may not cover every treatment, but if you can find a chemo drug in this guide, read it. But anyone being treated with radiation will benefit from this guide regardless of the cancer.

I often use the quote from Maxwell Smart from the television show “Get Smart,” “missed it by that much,” a sarcastic snipe for really blowing it, or missing it by a mile, in reference to warnings about dental issues. You can see for yourself, there are quite a few issues to be concerned with, in addition to the salivary gland, which also has an impact on the health of the teeth.

Then again, I have already been living this reality. Whether I am dealing with a teeth cleaning, a cavity being filled, or something more serious, I am prescribed an antibiotic a few hours before the appointment, as a result of having cardiac issues and no spleen (thank you Hodgkin’s Lymphoma). But my teeth are definitely brittle, from the radiation thirty-five years ago. I broke a tooth soon after my emergency heart surgery in 2008, and over the years have broken three more.

Fixing the teeth is where it got complicated for me, and expensive. As the person who wrote the original post stated, the dentist want to “do all kinds of things costing thousands of dollars.” If you were lucky through your childhood and your adulthood, all you ever had were cleanings and fillings. But if you ever needed a root canal or crown, you know those are expensive procedures, even with dental insurance.

This is how each of the last three of the four broken teeth that I had were resolved. I saw the dentist. They wanted to do a root canal and crown. I said “no, I can’t afford that. Just pull the rest of the tooth.” The dentist would try to talk me out of it, but I insisted that unless they were going to make a huge discount, there was no way I could pay them. Then I was sent to an oral surgeon as the dentist had nothing more to offer.

Though a less expensive option, it still ended up costing a lot for each tooth. But before I get to that, the oral surgeon was looking to cash in himself, with not enough of a profit margin from a tooth extraction. He recommended an “implant” tooth. Again, I declined, as explained in the slides above, the radiation I went through, has left my jaw compromised and at risk of osteonecrosis, simply, my jaw risked being broken. His profit dashed, he had one more idea. He wanted me to go through hyperbaric treatments that would help my jaw heal from the extraction. He went from ka-ching to ka-bong. I cannot go through hyperbaric treatments having been given the chemotherapy drug, Bleomycin for my Hodgkin’s Lymphoma. It seems, regardless how long ago it was that I had received it, the remnants of the drug remain in my body, and could reactivate with oxygen of any kind, creating a “bleo toxicity”, as bad as when it was originally given to me.

By now, I have frustrated any attempts by anyone to make any major money off of my dental situations. I was at risk enough from infections due to no spleen and being in congestive heart failure. I did not need any more complications. Then the oral surgeon had a different idea. And this one, while I had never heard of it before, sounded like it might actually be worth it for me, to help heal, and reduce the risk of any complications.

It is called Protein Rich Plasma, PRP for short. It is used for many healing opportunities, but for the purposes of this post, I am referencing the jaw bone. Blood is drawn from the patient, then spun until a concentrate of platelets rich in protein remain. Once the tooth is extracted, and before the gum is sutured shut, the PRP is placed into the hole left behind, assisting the bone in its healing. I am three for three with this process, having no complications, even with my complicated health.

And though I expect to go through this process at least a few more times, because of the radiation damage to my teeth and jaw, a new issue was discovered dentally. All along the gum line, decay is starting to develop at the base of the teeth, and enamel is disappearing. A new situation that I was unaware/aware of, an extremely dry mouth, no saliva as I sleep, is caused by my salivary gland, of course in the radiation field over thirty years ago, has failed, causing sugar and other stuff, to remain on my teeth in between brushings, causing an intensified destruction of my teeth. There are some therapies that I am doing, including flouride rinses, and other saliva substitutes (gives new meaning to the term “swap spit”, depending on your age, you may not get that innuendo). This is something new happening, so I am not sure where it will lead.

Nobody told me over thirty years ago that I would be having these problems because of my treatments. Then again, they did not know then what they do now. And I am blessed because I do have a dentist that knows and understands the risks and progression of what I am dealing with. Not everyone is as lucky. But the truth is, if you received radiation therapy to the head and neck areas, then this is something you should keep on top of. I am not saying something will happen, but it is better to keep an eye out for it.

Posted in Cancer, Family and Friends, Inspired By..., Side Effects, The Heart | Leave a comment

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