Warning: yet another post about Covid 19, a.k.a. the Corona virus

I am doing my best to stay positive, but being a bit of a news junkie and having so much time on my hands I find it next to impossible to stay away from online news on the computer and the overwhelming number of stories centered around Covid 19. Some stories really rip my heart out like the news out of Italy that they may be forced to make a decision on who gets life-saving ventilators and who doesn’t. Absolutely heartbreaking. The criteria seem to be whether you are (or were) in relatively good health prior to contracting the virus, your age, and other criteria, leaving doctors in the untenable situation of deciding who lives and who dies. These two stuck with me because 1. My husband I are no spring chickens and 2. My husband’s health. It is such an alarming and sad story.

Other stories make me downright furious such as a story I read on social media concerning staff at a popular coffee shop in Ontario cheering on the fact that the population of elderly citizens in their town will potentially be radically reduced by the virus. Apparently, the staff were young people and were joking around about the virus being a “Boomer Remover”.  Yeah, I’m not laughing either. I thought a lot about writing about this on my blog because I know these young people are in no way representative of the younger generations. But it really hurt me. I am, after all, one of the baby boomer generation. And, I know they are right, “the truth hurts”. This virus will likely wipe out a lot of older people.

As I said, I know these particular young people are not representative of their generation, but it makes me wonder if the elderly are getting the respect they deserve – not just because of age but because we are all human beings. And what about the sick and vulnerable? Do they not also deserve our concern and protection? Are people taking seriously the need for social distancing? Seeing images of crowded beaches in Florida makes me wonder. In a couple of weeks, I have no doubt that the number of people infected will jump tremendously because of the March break celebrations. It’s very frustrating. I suspect the number of deaths in Italy will pale in comparison. Perhaps it’s time government stepped up and made self isolation mandatory. In the meanwhile, there is little I can do but hope and pray. Stay healthy my friends, and stay safe.

A Forced Surrender

Is there anything worse than getting sick right before a long weekend? I am forced to surrender; to rest; to let go of the need to get things done. I am my own worst enemy, pushing myself to exhaustion at times. Why? I don’t know and couldn’t tell you, even if you paid me. The weather has been cooperating, but my body has not. So, instead of getting out and about, like I’d wanted to do, I am sleeping – a lot! I am grateful that I don’t get sick often. I’d make a lousy patient. But the silver lining is that I am getting lots of rest and taking time to read (I have three books on the go at the moment). Still, I hope this thing is on its way out of my system. At any rate, I thought I’d stop by and wish you all a Happy Labour Day. May you enjoy this well deserved day of rest.

Lessons learned about advocating for the sick and/or vulnerable

Many of you know that I have been on a journey with my husband through the health care system in Canada for many years now. I want to preface this post by stating that doctors and nurses in Canada are doing their very best within a health care system that has undergone severe budget cuts in the past few decades. Monies that have not been replaced. These cuts have played havoc with the ability of health care professionals to extend full and proper care to their patients. A shortage of both doctors and nurses mean patients are not receiving optimum care. Making patient advocacy an absolute necessity.

It became clear to me why patients need somebody to advocate on their behalf during my husband’s hospitalization about three years ago. At that time, he’d only been in hospital overnight when I received a call from him the following morning telling me he’d been released and needed me to come pick him up. It was the coldest day of the winter with temperatures dipping to around minus fifty Celsius with the wind chill factor. It was also in the midst of a flu epidemic that was keeping our emergency room crowded with people, and, no doubt, creating a bigger demand for hospital beds – hence my husband’s discharge. During the drive home he held his door open while he vomited on the pavement. I was incensed, but he adamantly refused to go back to emergency, I should have insisted.

Fast forward a year or so, it was another case of him being unable to keep food down and he was having trouble breathing. He spent a week in hospital but was released, still sick. It was an awful week at home. He couldn’t eat anything without throwing up. He looked like death. He spent every day in a zombie-like state. We were following the directions given us when he was released but he was getting worst. Finally, I called an ambulance to take him back to the hospital.

 He would be hospitalized for another three weeks. He had so many issues. One of which was a heart arrythmia and doctors feared he may have another heart attack. (He’d undergone a quadruple heart bypass a few years ago.) After much debate between medical specialists he was air lifted to Edmonton for an angiogram. Now, following an angiogram procedure the patient needs to lay flat for several hours to prevent bleeding. In my husband’s case he was put in a wheelchair and then flown back home. It resulted in a blood clot in his leg that caused it to swell to three times its normal size. It aggravated his health and caused his hospital stay to be extended. I should have been with him. Weak and sick he was in no condition to fight for himself.

In March of this year my husband had to be hospitalized yet again. Initially, I thought it would only be for a few days. He had fluid build up on his heart and lungs yet again – a condition he’d been hospitalized for previously several times.  I wasn’t terribly concerned – a few days on oxygen and he would be home again – so I thought. But a blood test revealed that his blood was very thin – a result of medications he was on that were not monitored. Special care had to be taken to ensure he wasn’t cut as he could bleed out very quickly. Red flag number one! After a few days in hospital a lung specialist was called in about his difficulty breathing. Apparently, he had been living with a damaged diaphragm, likely caused by heavy work he’d done when he was young. At any rate this resulted in decreased lung capacity. The doctor remarked on his surprise that this had not been caught earlier in one of his many hospital stays. Red flag number two! Then his blood pressure started dropping dramatically the minute he stood up leading to a couple of falls and scaring both my husband and his nurses.  Red flag number three! Then he started throwing up and experiencing acute pain in his side. After many tests and further investigations doctors diagnosed a gall bladder attack, but due to his history and with a heart arrythmia, it was decided that he needed to be air lifted to the University of Alberta Hospital – NOW! Our local hospital is small and does not have the diagnostic tools, or the number of specialists that are available in the city.

I was offered a free ride on STARS, the air ambulance, flying him to Edmonton once again. Naturally I said yes – I didn’t want a repeat of what had happened to him the year before, that quick shuffling him back home to save dollars. I was determined to be his voice and his advocate no matter what happened next. How often I would be called upon in the weeks ahead!

The problem, as I see it, is that patients are treated for whatever malady they are admitted for, without consideration of the overall picture. This can lead to dire consequences for the patient, if there is nobody to speak on their behalf. The first week in Edmonton was extremely stressful. Like most hospitals, patients are placed in the first bed available, in my husband’s case this was a bed in the orthopedic wing on the surgery floor. The University of Alberta Hospital is a teaching hospital, which means he had many interns and student nurses caring for him. Which is fine, as long as somebody is overseeing their “care”. 

One morning, after we’d been there a short time and doctors had brought his pain level under control, two bright-eyed students appeared by his bedside. “We’re going to get you up today”, one said. I looked at them rather incredulously and asked if they had read his chart. “Do you know that his blood pressure drops substantially the minute he stands up and that he’s fallen twice at the hospital back home?” I asked them. No, they did not know this. No, they had not read his chart.

 At another time I was reading the ingredients in his i.v. bag: sodium and potassium were listed. Off I went to talk to the charge nurse to question this. At that time my husband’s kidneys were failing and we had been told by his kidney doctor about the importance of limiting potassium and cutting salt out of his diet as much as possible. She told me the surgeon looking after his gall bladder had ordered the i.v. while the kidney doctor had ordered it stopped. She had two contradictory orders and wasn’t sure which she should follow. I explained the importance of keeping potassium and sodium (salt) to an absolute minimum in order to avoid dialysis and asked that the i.v. be stopped until she spoke with both these doctors. She did and the issue was resolved.

These are just two examples where I had to speak up on his behalf. He was so sick and so very weak. For two weeks he was unable to eat anything – partly because he couldn’t and partly because of the tests that required he not eat or drink beforehand. I shudder to think what would have happened to him if I hadn’t been there. How many patients have no one to advocate for them? People who are very sick do not have the strength to be fighting with health care workers, nor the presence of mind. In a perfect world this would not be an issue. However, with administrators facing ever increasing financial pressures, patients are often discharged from hospital the minute they can stand on their feet, regardless of how long. Furthermore, patients are not treated as whole human beings, but rather for the specific issue that brought them to the hospital in the first place, never mind how many other health issues they may be experiencing.

So, if at all possible, and I know in many cases it’s not possible, make sure your loved ones have an advocate if they are hospitalized, and even if they’re not. In Canada most family doctors can only address one issue due to rules and regulations regarding payment. It is a sad situation and one that should be addressed by the government. Until it is the weak and vulnerable are at the mercy of the system – and the system often fails them.

Cautiously Optimistic

We have past the one-month mark since my hubby’s surgery. If you follow this blog you already know that doctors had warned he could have a heart attack within thirty days of his surgery. I am happy to say that has not been the case

To add to that good news, his kidneys seem to have rebounded and though they are far from optimum they are at least pretty much back to where they were functioning prior to that awful gall bladder attack and subsequent major surgery. His kidney doctor has been keeping a close eye on him while he has kept him off dialysis to see how he does without it and so far, so good. We know that he will eventually end up on permanent dialysis – which we’d been told back in March would be the case when he was first placed on it. In fact, doctors told us at that time that it was highly unlikely that his kidneys would bounce back.

He is surprising his doctors and I couldn’t be happier about it! Still, we have to be cautiously optimistic as the issues with his heart, kidneys, and lungs remain. The damage caused by over twenty years of diabetes cannot be corrected. One day at a time, which is how we should live anyway, right? Nobody is guaranteed a future, but I am exceedingly grateful that whatever days remaining will not be spent on dialysis – at least not in the immediate future.

I sincerely thank all of you who have sent messages of support and for those who have prayed for both of us. May all your kindnesses return to you a thousand-fold.

Edmonton Adventure #2: Blessings and signs of hope

Coming home after round two in Edmonton I am still harboring feelings of apprehension. The past few years have been fraught with difficulties and challenges where my hubby’s health is concerned. Fear seemed to be a constant companion with each and every hospital visit. I am still holding my breath. He’s still in hospital and while there have been successes such as his recent surgery other issues remain.

Doctors had said he was at a very high risk for surgery, in fact they warned he may not survive it. All these thoughts were on my mind as I sat waiting for the operation to be finished – as I waited for news.

I had met and made friends with two women from Northern Saskatchewan during his last hospitalization. I was grateful when they offered to come sit with me while hubby went through the surgery. They were a wonderful source of strength and a welcome distraction as we traded stories about our lives. Words cannot express the relief when I received word that the operation was successful and he was in the recovery room. I will always be thankful for the support and friendship gifted to me by these women.

Life and death take on a much deeper meaning when your days and nights are spent in a hospital. I was blessed to meet many kind and compassionate people during my time in Edmonton. People whom had been total strangers prior to this. People who I will keep in my thoughts and prayers for a long time yet to come. People who have become friends. Friendships forged in the fires of fear. Friendships that gave hope, support, and sustained us.

A rainbow over the skies at the airport where we awaited the air ambulance that would take us home

As the day finally came when hubby was transferred back to our local hospital, I bid good-bye to one and all – friends, doctors, and nurses who had aided me in so many ways – not least of all in lending their strength when I was at my weakest points. At the airport a beautiful rainbow arched across the sky – that age-old symbol of hope.

As the plane flew us back home the scene outside the window was serene and beautiful. We were flying above the cloud cover and the sun shone. It seemed an apt metaphor: no matter what storm clouds may gather I hope I will remember the sun will always light the way again.

The sun above the clouds made for an idyllic and tranquil scene as we winged out way home

A weird sense of Deja vu

We were only home two weeks, barely enough time to get back into the swing of things. Then it struck again: Another gall bladder attack. It was in the early morning hours and dawn had not yet broke through the night skies. My husband was in agony. I rushed him to the emergency room and before we knew it we were on board yet another air ambulance taking us to Edmonton.

As we waited in the emergency room at the University of Alberta hospital for him to be assessed the sense of Deja vu was strong. We had indeed been there, done that just seven weeks ago! I was tired and frustrated. We had been told at that time he was too high a risk for surgery. Instead they’d stuck a draining tube in and hoped that would be the end of it. NOPE!

To be fair, doctors did do the best they could for him at that time. But now, our doctor at our local hospital had told us that, high risk or not, it had to come out. I was terrified.

Fortunately he came through the surgery yesterday without a hitch and thus far is doing exceptionally well. However, we had been told during his prior hospitalization that any operation would cause stress on his heart that may not be evident immediately and that the risk of a heart attack would continue for up to a month or more.

Still, I am hopeful and relieved that his gall bladder is out and no longer represents a danger to his health. At any rate there was no other choice this time around.

Prior to his surgery I had been praying and asking God to guide the surgeon’s hands. I believe He did. An overwhelming sense of calm filled me as I prayed. I had also asked God to continue to him safe in the weeks and months ahead. I have faith in the Creator and I am so very grateful for the prayers of family and friends. I believe in the power of prayer.

It has been a very strange Deja vu, including that sense of complete calm and total peace, even in the midst of the storm, for which I am grateful.

Home at last!

It’s been a long hard road to travel, but after nine weeks in hospital my husband and I are finally home at last. I am so grateful for the people who shared my trials during his hospital stay. I am grateful for the daily phone calls with my siblings; For the many kind words delivered via social media. And I am grateful for new friends who supported and sympathized with me while they themselves were walking the same or a similar road.

Yes, we are home. Is he better? No, he is not, but he is no longer in a crisis situation, which, again, I am very grateful for. Our first day back at home had me awakening to the sound of the thud as he fell to his knees on our bedroom floor. No, he was not hurt, but it is an example of how he is not really ‘better’. The dizziness remains, and most likely will form daily living for as long as life lasts. This is not new; he has been living with this condition for a few years now. I had hoped the doctors could find some magic pill that would take it away. Sadly, that is not to be. It is simply one more side effect of diabetes. It places severe limitations on what he can and cannot do. I sigh, but I met so many wonderful people during hubby’s hospitalization – people who are enduring much more and much worst conditions.  Yes, we had to face several disappointments. Yet, while his quality of life is much constrained, he is at least alive to tell the tales of his adventures in the health care system.

His kidneys failed while in hospital and he is now on dialysis and will likely be for the rest of his life, though doctors tell us miracles can happen and there is a possibility of his kidney function returning – it is a possibility but not a probability. Still, he is still here beside me and I am so very grateful for each moment of each and every day. And it is good to be home at last.

Hoping and Dreaming

My husband is still in hospital. His blood pressure drops every time he stands up. He has a plethora of health issues: diabetes, heart disease, kidney disease, and more recently we learned, lung disease as well. Through all the challenges he has kept his sense of humor.

 In hospital he has fallen twice and is now confined to bed. After one such fall, after the nurse had made sure he hadn’t done any harm to himself, she jokingly asked him what he was doing on the floor he responded, “looking for dust bunnies”.

The doctors are trying to figure out what is causing the drop in blood pressure and until that is sorted out he cannot come home, for obvious reasons.

I just finished reading a couple of blog posts – one about patience and training a new puppy; the other about “date nights” while raising a family and the power of love.

Love, whether for a significant other, a family member, child, or a fur baby, blesses us, gives us hope, and allows us to dream.

Needless to say, I am hoping for a solution for my husband’s health issues. And I am dreaming of better days to come when he is home with me once more.

Just Okay

“How are you?”

“I’m okay.”

“Just okay?”

“Yup, just okay, but I’m here.”

I participate in this scenario quite often. My husband is not well and I am his main caregiver. I don’t think most people want an honest answer to the question of how I am, not really. Most days I am okay – just okay. There are some when I am very happy, and of course others when I definitely am not happy. But for the most part I am okay. I don’t think people really want to know about my daily struggles or the things that I find frustrating. It’s not easy caring for a sick partner. It just isn’t. I congratulate myself on a daily basis for being ‘just okay’.

I have written about the ups and downs of health issues pertaining to diabetes more than a few times here. My husband jokes he has ‘frequent flyer miles’ at the hospital. This weekend he ended up there once again. I don’t know who dropped the ball. It may have been the doctor’s office when they called in a renewal on his medications. Or, it may be that the pharmacist neglected to include one of his meds in his blister pack. He takes a lot of medications, and it’s easy to miss it if one isn’t there. Plus, his meds are often changed for one reason or another. At any rate he’d been without one of them for about a week – a medication he really needs – hence the most recent hospital stay. It’s scary sometimes. And it’s also daunting, this responsibility to be on top of everything medical.

I am doing my best to take care of myself as well as him through it all. I try to keep it positive and I pray a lot. But much of the time I am exhausted, physically, mentally, emotionally, and spiritually. Yet, I am okay. I know powers greater than mine carry me through it all. So, yes, I am “just” okay and I’m alright with that.

The Tyranny of Positivity

Negative Nellies – that’s the term people use to describe those embroiled in negative emotion. But is that fair? Are we judging people before we know what life is like for them? For example, my husband is very sick. Lately he has been battling a cough that makes it next to impossible for him to sleep at night, and consequently, me as well. He has a slew of health issues and is on several medications, which makes taking something for the cough problematic. Medications can interact with one another to make a bad situation even worse. It’s hard not to be negative when you’re sick and not getting the rest you need to recuperate.

And for me, lack of sleep combined with worry has made battling my negative demons even more of a challenge. Sometimes the societal demands to be positive when just putting one foot in front of another seems like a herculean task. Speaking for myself, it feels cruel. I am tired! So, can we cut one another a break? We don’t know what is going on in the lives of others. Can we set aside the judge’s robes and the demand for positivity?

Yes, positive emotions are easier to live with and a positive attitude is preferable to a negative one. Yet, we are all only human. Sometimes life is hard. Placing demands on people to be positive when we don’t know their situation or what issues they may be struggling with, is, frankly, inhumane in my view. Kindness and compassion will go a lot further to help people become more positive than the judgment and labeling of them as ‘negative nellies’.

Let’s be a little more gentle with ourselves, and with one another.