Help us tell your story to our Heart Institute Family 

1. A bit about you, age occupation, interest, family, where you live.

• I’m 51 yrs old, married 27 years to Ruth, we have two children. Curtis 25 and Jenna 19
• Work for a service provider at St. Lawrence College. I was a logistics coordinator for the event and banquet services.
• I have two older sisters and a brother. Ruth has one sister
• I enjoy golf, fishing, and tying flies for fly fishing.
• We have lived in Kingston for 30+ years

2. Your heart history, family history, previous diagnosis, concerns.

• My brother had a heart attack about 10 yrs ago. Recovered and doing well
• History of heart problems on the Hogan side of the family. I am not close with them so I do not know details.
• I was a typical person who avoided doctors. And had serious issues with anxiety causing me to faint with anything medical related such as getting blood pressure and even during an X-ray. The anxiety started to cause health issues. About 6 months prior to the heart attack, I started getting sick and vomiting when getting ready to do simple things like getting ready for work or going for a long drive. By December 2019 this would happen 4-5 times a week multiple times a day.
• I knew that I had a possible hernia (umbilical) but was afraid to see the doctor. This caused a lot of discomfort and later played a factor in my heart health.
• I was 260 lbs, not eating as healthy as you should, I put myself under a lot of stress, and the history of heart disease all played factors in my heart attack
• Dec 24, 2018 @ 5:50 pm I had my heart attack. We had just returned from seeing my sister and brother-in-law for Christmas. We all got home and went off to do different things. I was walking my son’s dog; chocolate lab was only 4-5 months old. I was trying to run with her and lost my breath. We were very close to home; I was inside in less than a minute. I assumed it was an anxiety attack which can cause the same sensation of a heart attack. I started to panic a little and went up to the bedroom to try and sleep it off. My chest continues to tighten and at that point I called for my wife and son for help. We called 911. I was taken in right away at the emergency room and had one stent put in.
• Over the following two months I was recovering at home. I started to lose a considerable amount of weight. In one year, I lost close to 90 lbs
• I returned to work in late February 2019 determined to get back on track. I was not going to sweat the small things and try to lighten stress. I continued to have issues with anxiety because of many factors such as my heart attack. I was getting sick at work and home multiple times a day.
• One morning in February I woke with extreme pain in my right shoulder and unable to lift my arm. Then later that day I had the same pain in my left hip. The following few days the pain slowly left but then my hands started to swell, and the joints could barely move. This continued for 5 weeks while the doctor tried to figure out what it was. Turns out I now have Rheumatoid Arthritis to manage while I recover. It caused many of sleepless nights and painful days. At this point I am lucky that the arthritis is under control. Likely from all the medications I take.
• On my road to recovery in 2019, I was going to cardiac rehab, and things felt like they were going in the right direction. After a few sessions of rehab, I started to feel lightheaded and my blood pressure would drop. I was starting to get sick whenever I pushed myself a little. We had to stop rehab while doctors try to determine why I was getting sick all the time.
• In the meantime, my heart health was not improving. After the heart attack my ejection fraction was 33 % then a few months later it was 24%. My family doctor had book appointments for some of the other issues. One of which was with a sleep clinic. Turned out that I had a bad case of sleep apnea. This was causing the right side of my heart to swell as my left side got weaker. I could only walk about 50 yards then needed to stop and catch my breathe. Going up 7 stairs was a good day. I would get lightheaded putting on shoes or whenever I bent down.
• In the summer of 2019, I was having issues breathing whenever I would lay down caused by congestive heart failure. The left side of my heart was not strong enough and fluids would build around the heart and cause swelling in feet, ankles etc.

This around the time that conversations about the Ottawa Heart Institute started.

• I was admitted to hospital after going to emergency room on four different occasions. Mainly for the congestive heart failure but one for the hernia that I had been dealing with. This is significant because during that visit they did an Xray of the hernia and found something else. In the Xray they could see that I had a growth in my right kidney. This was in September 2019 and they had found a tumour that needed to be removed. I was now scheduled to have my right kidney removed in December 2019. We were lucky that the cancer was found early enough, and I recovered quickly. But now I only have one kidney that has a lot of work to do.
• I was scheduled to have an implantable cardioverter defibrillator (ICD) in November 2019. I heard many stories in the hospital waiting rooms and from people who know people. This was very intimidating when I waited for the ICD to be implanted. You always hear the bad stories, and you fear these things will happen to you. I can say that my experience was good and did not have any episodes with the ICD going off.
• After being at the emergency one two occasions for the hernia my director at work and I had a discussion. He was amazing in giving me the support I needed during the few months I was back at work. However, we both knew things were not improving and that I should take a longer leave in order to get better. I started on leave in September 2019.
• Now I’m about to embark on 2020 as the year of recovery. New challenges and new fears with Covid spreading and my body trying to recover. Now my journey with the Ottawa Heart Institute begins.

3. First visit/why you came to the Heart Institute, results. Feel free to include names of doctors/nurses/technicians that stand out to you.

• In Jan of 2020 is when I started the initial visits with the Heart Institute. They assessed my heart health and started to discuss implanting an ICU (defibrillator)
• In the early stages I was introduced to a team that would be working with me. I was confused at this stage because of the other health issues that I was dealing with. I had many phone calls and appointments that time seemed to overlap. This is also when COVID-19 had a grip on everyone in 2019. I work with Kyla Brown RN as she gives me guidance regarding my health and medications etc. I also worked with Carita Van Winkle, in the early months. Carita is the pre transplant coordinator. We had many discussions about next steps. It was hard to keep up with changes and envision my future with choices that are made. Both Kyla and Carita were key to keeping me on track. Kyla continues to work with me post transplant and has been very good at keeping me up to date on my health, if there are changes and explains why.
• As the few months progressed the congestive heart failure was at the forefront. Discussions of an LVAD (left ventricular assist device) was one of the next step options. The Heart Institute did an amazing job with taking the time to teach you about your situation and provided material to read.
• The anxiety and depression I have dealt with quietly for years. But I needed help and finally agreed to talk with someone at the hospital. I met Heather Tulloch, Psychologist, sometime in May 2020 and had a great connection from the start. While I may not have agreed to some of the cognitive therapy and such, I still took away things that worked for me. Heather was a big part of my recovery in the last 8 months of 2020. I was able to calm myself prior to surgeries using a happy memory from my childhood. It sounds so simple, but it had to work. I found a moment when I was at peace. Whenever is started to feel nervous or tense I would quickly remember that moment and it would help divert my attention and put me at peace. As they say, this to shall pass.

I still struggle with episodes of depression. It is exceedingly difficult to stay positive when dealing life threatening diseases now being part of my daily life. I would stay in my bedroom for 1-3 days in the dark only leaving the room to get meals (if I felt like eating) and medication. I would get to the point where I just want to heal but I continue to have pain from hernia, times of nausea and vomiting, knowing that I was up for LVAD surgery. I was getting reluctant to talk with doctors and nurses worrying about what they found next. On top of this we were all dealing with Covid 19 restrictions.

• The spring/summer of 2020 was spent in hospital or hiding from the Pandemic. Many of the days at home were hit and miss on whether I was feeling well or not. Many times, it was dealing with pain from hernia and abdominal areas. My heart continued to weaken, and the congestive heart failure was becoming difficult to manage. It is such a fine balance of limiting fluids to 1500ml a day along with < 2000 mg of salt a day. If I go over the fluids build up quickly. If I do not have enough fluids, I risk the health of my one kidney.
• The cancer that was found in September 2019 and removed in December 2019 played a factor in the transplant. They do not normally do a transplant if someone recently had cancer. I knew it could be a minimum of 2 years and up to 5 years cancer free before being on a transplant list. Fortunately my cancer, Basal cell carcinoma, was caught early enough and risk of returning is extremely low. The decision to have an LVAD instead of a transplant was made due to the timeline of the cancer.
•  In September I had one of my Right Heart Cath (RHC) PAU completed. This is where they take a camera on a wire and go through a vein in the neck or the groin. They move the camera to the heart and look at its health. They admitted me to the Heart Institute a few days later as the results were not as good as hoped. The prep for the LVAD started with many tests and getting my body in the healthiest condition possible for the surgery.
• Over the next few days there were further discussions about a possible transplant. They would need confirmation from my oncologist that the risk of cancer returning is minimal. When having a transplant your immune system is basically shut down so that you body does not reject the new heart. If I had cancer or it returned it would spread quickly. We had positive news from oncology, and they decided to put me on the transplant list. This meant that I was not having the LVAD (artificial heart pump) implanted. It is now mid October 2020 and I am in hospital and put on the transplant list.
• Only 2 days later I had the nurses wake me extremely excited. They had a donor heart for me already. With having a blood type of AB+ and a couple of other factors that matched my donor and I made this possible. October 19 2020 I had a new heart and a new journey ahead.
• From the moment I woke up in ICU the difference was incredible. It was light a light switch was turned back on. I could feel the energy and wanted to get up start walking. The ICU unit staff were incredible during my few days in that area. I progressed well in the early stages and was able to walk further each day without needing to stop.

Over the next few weeks, I had different departments come by and we worked on plans to recovery. The rehab team were very encouraging and motivating. I would wake up at 4-5 am each day ready to get going. This when I would start my exercise.

• In November I was released from the Heart Institute, but they still required me to be close by for tests and any possible complications. Since I live 2 hours away in Kingston it was decided that I should stay at the hospital residence building in Ottawa. My wife was finally able to come see me for only the second time since late September. (more below due to Covid). We stayed at the residence for over 30 days where I had a couple incidents that caused issues with my medications, diet, and health. One incident was with the hernia in which I was in pain and vomiting for 4-5 days. I was unable to keep medication down and dehydrating my kidney from being sick, Kyla was very helpful in getting me back on track. Her and the team of doctors are very well connected so getting directions was never an issue. We returned to Kingston approx. December 10 2020 and now I travel to Ottawa 1-2 a week for tests and procedures. This will slowly decrease as my health improves.

4. Procedure, care in the institute, rehab and programs. What was your rehab journey like during a pandemic?

• We have made arrangements for my cardiac rehab to start in approx. 5-6 weeks. This will take place in Kingston. Unfortunately the hernia has continued to cause delays in some of my rehab work. On Feb 11 2021 (yes this year) I had emergency surgery to repair the hernia as it caused blockage. I was lucky that everything went well with surgery and I’m recovering well.
• Covid 19 has everyone under its grip. Of course, it affected access to hospitals and beds due to the screening processes and number of beds. After months of being in and out of hospital I have seen how the extra steps delay the process. The beds get backed up in other departments so quickly. The staff would always have to wear the extra gown when coming into my area. One reason was for extra Covid steps as my immune system is currently weaker than normal.
• You can see the added pressure in the hospitals due to Covid. There are many extra steps and cleaning that take time away from direct patient care. While it may be frustrating for them it is greatly appreciated.
• Since March of 2019 I was in ear shot of 4 suspected Covid cases. One specific case in Kingston was confirmed and the only thing separating us was the window outside. This was a very intimating moment as I was waiting for the emergency surgery and didn’t know if the person was coming inside. The staff at KGH did a great job of containing the possible threat to others. It is a constant sense of paranoia when I go out of the house now. I will continue to do my part and wait out the storm.
• When in hospital the worst thing that Covid affected was the visiting. In late September the policy at the Heart Institute the visiting policy was strict. I was allowed one visitor for one hour during my stay. So from late September until Mid November I had to choose the day after surgery to see my wife for one hour. That was it for visitors at that time. Of course these policies change as restriction get lifted or become tighter. The month spent at the hospital residence was such a relief for me. Ruth was able to help me with many things such as meals, medications, insulin shots etc. But most importantly we kept each other company.

5. Prognosis and next steps for you (monitoring)

• I still go to Ottawa for weekly blood tests and procedures
• Cardiac rehab is just around the corner
• Be more disciplined about being active at home
• Doctors have a plan in place for the next year. Everything depends on te health of my heart (which has been fantastic), medications, and my body not rejecting the heart. My tests recently have all been very positive.

6. Family heart health – is it hereditary? Heart health care/research for your children.

• Known to have issues on Hogan side of family. Not close with these relatives.
• My brother had a heart attack and stent put in over 10 years ago. He is doing well

7. What were you able to do that you didn’t think you could after your bypass.

• I pictured myself having issues with breathing for a while. I expected to feel pain from the surgery. I was simply surprised how quickly I was moving and how much energy I had. It was just a few days before that I wasn’t able to walk very far and now I was doing it without stopping.

8. What are you looking forward to doing with your gift of time.

• I think most people say the same things and they are all relevant to each other. I have spent the past 2 years focussed on my self and tried not to focus on day-to-day negativity. I look forward to the quiet. I’m tired of hospitals, bruises and scars and just want to heal.

As time allows, I plan to spend for time outdoors again. Golfing, fishing, or just sitting in a lawn chair in the backyard.

9. Additional thoughts in your own words and those of your friends and family.

• This story is likely confusing as I tried to get as much (but not too much) information to you. It was just as confusing living this time. All of these health issues happened in such a short amount of time that each treatment or appointment would start to overlap each other.
• During the summer months of 2020 Ruth’s mother, Sue Douglas Peters, passed from a short battle with cancer. This was difficult because of Covid and her and I being sick. We didn’t see each other much over the last months. Ruth and her sister, Chris, worked extremely hard after her passing going through the house and having it sold. Ruth doesn’t drive so we would go Coe Hill while she worked on the house. I was at the point that I had to pull over in a parking lot to sleep for an hour before we could move along.
• The year had its good times as well. Our daughter Jenna started going to Trent University in Peterborough. She stayed for one more year in high school due to my health issues. My son is very strict with me if he thinks I’m sleeping too much or I’m going to miss my medication. My brother, Jim Hogan, was a huge help. Many of times he was driving me to Ottawa, waiting for hours sometimes, and then driving me home.
• He and my sisters would check on me through texts or a random phone call to see how I’m doing. Julie does whatever she can to help out. Many times someone to talk to and get calmed down.
• If it wasn’t for the Ottawa Heart Institute I believe I would be steps behind in my recovery. They really care for each individual. Heart disease is different for everyone and my recovery will be different from another. Without their personal care I could have set backs.
• In the early stages the care and determination of the doctors and nurses really allowed for trust to be established. This made it easier for me to go into procedures and tests without anxiety
• My journey continues with a brighter future ahead. At the end of the day my story is about determination. I never gave up and truly learned how focus on me. I was determined not to quit on myself. When you are very ill it is easy to fall into a dark place. You see it physically and hear people say that I look great. In the meantime I just spent 5 minutes staring at the tone of grey in my skin. I knew things were not going in the right direction but I focussed and persevered.