We were chatting all night, a real connection. It was new and exciting meeting someone from across the other side of Canada. We knew of each other for many years but that night was the night we knew we were in love. We were sitting in the Volkswagen Corrado in the parking lot of St. Joseph's Oratory. I was 18 and he was 21. It took a whole 10 days to make us inseparable. "If only we could be together all the time...", we said, that wish then quickly came true.
Fast forward to January 2017 and we are once again sitting together, in love, chatting with the view of St.Joseph's Oratory. This time, the Corrado is long gone, and we are behind the walls of our new second home.
Most people walk into a hospital and feel lost, perhaps nervous. When we walk into the MUHC Royal Victoria, it feels so familiar, it's not so strange at all. The 7th floor of the D7 wing is our new second home. The nurses, physicians and support staff are all familiar faces, they make us feel welcomed and cared for, some we consider them like friends.
Dennis and I have so much to share about this new life, but in many ways, it's a subject that is hard to share. Perhaps its more that we don't know how much to share with you. Being completely honest and vulnerable is super hard when you have no choice but to put a brave face on and put your real feelings aside, to keep faith. So for the most part we hold back and we don't share this side with you.
There was a period where most mornings we woke up frightened. It happened alot. Sometimes it can be at 2 or 3 in the morning, or sometimes 4 or 5, but usually the morning starts the same way. "It's starting..." he says, whereby I try to focus quickly, run and grab something to make it stop. This is the extent of what an electrolyte imbalance can be like. Between the diurectics and all the other meds, it's only normal the body will have some sort of imbalance, it's just heartbreaking in the moment when you feel so helpless. Or it can be a low-flow alarm, and at that point he can't sleep wondering if its serious to call in.
Or it can be something as simple as "I'm bleeding again." There is a drop of blood that quickly turns into alot of blood quickly, that is what being on blood thinners can do. "Nothing that a bit of resolve and bleach cannot fix. Don't worry. It's nothing.", I say as I grab the linens and run a quick load of laundry.
Living with heart failure has not been easy, for Dennis especially. But the my Love Of My Life, asked me to write a while back about what it is like.
We got into a huge fight a few months back - mostly it was because I was trying to be the disciplinary partner - "You can't drink that much water." or "We can't eat that." But I quickly realized that what Dennis needed more was his wife and bestfriend and not just his caregiver. The mourning period post-op LVAD proved to as hard to bear as the physical and psychological impact of pre-op; having multiple organ failure going into the open heart surgery.
Having heart failure is living by a strict set of rules.
Imagine if your favourite thing in the world is water.
First rule: Water restriction.
Dennis told me that the best or coolest gift he ever received, was a leather water bota bag from Machu pichu from his older brother Alvin. He would fill up that bottle and put it in the freezer to make it icy cold. The anticipation to drink would make him giddy.
But having heart failure and excess water means the heart is too weak to push the liquids out of the body causing water retention and edema in the heart or lungs. Imagine not being able to breathe because you drank too much water? It was a habit we couldn't break on our own.
Having an LVAD is another set of rules.
Second rule: Cannot be submerged in water
No baths, no swimming. It's like seeing the most beautiful ocean and not be able to step foot in. This part of having an LVAD is probably the hardest. With electrical controls and a hole in the abdomen tied directly to the heart requires daily care and constant awareness.
Showers however are probably the most sense of freedom from what I understand. The opportunity to cleanse one's thoughts and meditate.
Third rule: must be attached to battery supply or wall adapter; when travelling must carry an extra controller and two batteries
The LVAD depends on it's power source. It's only a rare few occasions whereby the source was unplugged temporarily by accident and when that happens, you actually feel the power slowly shutting down and the pump along with it. One of the major risks at this point is causing a clot to form.
The biggest disadvantage is the feeling of always being attached to a wire and the sheer weight of the batteries and controller to lug around.
How to travel? At this point we have to stay within 3 hours from Montreal especially being on the transplant list. Travel is a risk. Each battery can last between 4 to 6 hours and we have 6 in total with a charging dock that can accommodate 4 batteries.
Coping with end stage heart failure
The heart failure in addition to both previous and newly developed health conditions ie.COPD/Asthma, Sleep Apnea, Gout, Type 2 Diabetes, Elevated Thyroid, etc. has extended the list to near to 15 different types of medications with various side effects.
In the beginning it was not having control of the disease. Post-op LVAD implant he was left feeling weak, lack of energy and coupled with severe PTSD and emotional distress, it was really hard to be motivated to take charge and make real changes. By 5 months post-op things were looking up, he was active and trying. But having uncontrolled gout, and major side effects to meds, water-retention and a hernia which made him take a step backwards and was bed-ridden. That's when the danger started. Daily over a period of a year he was static and if you calculate a pound a week for 52 weeks it started to become a serious issue. For the first 6 months of 2017 Dennis was hospitalized almost 4 out of those 6 months.
With regular follows up, the MUHC nurse on board, his coach and his "go-to" Dee researched solutions as she believed in his success and wanted the best care solution to help him reach his end goal - a heart transplant.
The goal could not be achieved with his current weight and any risk of increased weight was nearing the point of no return. To be an ideal match for a donor and be physically able to survive a transplant, Dennis would have to lose near to 140lbs.
In a desperate measure to stop the weight gain and improve his chances for transplant survival, as well as potentially resolve the newly diagnosed diabetes, fatty-liver disease, elevated thyroid levels and sleep apnea; a laparoscopic sleeve gastrectomy was the only option of the four types available that would ensure that he would not have future issues with malabsorption post-transplant due to the importance of long-term anti-rejection medications.
Bariatric surgery and heart failure
Prior to having bariatric surgery, there are a series of meetings and group sessions to learn about the new lifestyle changes to come with this surgery. The sleeve gastrectomy is irreversible and like any surgery involving a heart-failure patient on long term anti-coagulants poses a higher risk. The Cardiac, Neuro and Bariatric surgery teams of the MUHC, convened to build their game plan and risk management strategy. And despite all risk and obstacles, it did really work and it saved Dennis' life.
Essentially Dennis' stomach has been reduced to 250ml or 1 cup. Eating, drinking and adapting psychologically to these life changes had to be embraced and accepted. In Dennis' case he was always looking or trying new fad diets for years. Doing this extreme change would be tough but fortunately much easier than someone who lacked this experience.
Fourth rule: No eating & drink at the same time and no carbonated beverages for life
Calculated eating and drinking rules are tough. Eat. Wait. Drink. Wait. Eat...
Then try adding meds to that schedule, sometimes he is too full to eat he will have to wait. Sip. Meds. Wait. Eat. Wait. Drink. Wait and Repeat. 4 med doses, 3 meals, 3 snacks and 10 drinking windows. As if there weren't enough rules already.
It's been 41 weeks post-bariatric surgery. 75lbs weight loss in near to 10 months and the last weeks in fall of regular long distance walking reaching greater than 10,000 steps. Diuretics and heart meds reduced by 50%, heart function improved, kidney and liver function 100%, breathing normal. "I can finally climb stairs with ease, that's how I know I'm better."
Adapting to an LVAD as a bridge to transplant
"I will never get used to having an LVAD, I honestly hate it. But I tell myself that it's saving my life. I always wonder what if I had said no to surgery, would my heart have survived and for how long?" Dennis said, as he looks at me with regret. "But at the same time I know it is what saved me and now I can say it has changed my life for the better; it's both a blessing and a curse."
Remembering the hard times we still cry sometimes but we talk about them more and each time it gets easier.
Surviving is possible because of the support system we have. And the overall miracle really lies in Dennis and how he handles this challenge.
"It all comes down to love and faith. Now with this transplant it's really all on me and how bad I want it, and I really want it badly."
Training starts soon. The most meaningful journey is to come. Follow us on this journey : https://www.facebook.com/groups/denniscarranza/
