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Most of you who know us know that Joey had open heart surgery in April of 2016. Within a few months we received a letter from Health Canada to inform us that Open Heart Surgery patients between certain timeframe had a faulty blood heater/cooler machine used on them. High risk patients such as himself (patients with diabetes) could contract a serious bacteria from the faulty machine and if the bacterial infection develops it can be fatal.
He seemed to be recovering at a normal rate, but due to his condition he could not go back to work at his trade and that seriously changed our income which led us to selling our home here in Revelstoke to pay off all of our debt and try to start fresh. We now live on disability which is barely enough to cover rent and his medications. Because it's CPP Disability (Federal) it covers nothing. No medical trips and expenses and no medications, at least not that we have been able to get and I have been working with a community program and social worker to help figure these things out and have still come up with no coverage. He went to work at a grocery store in the produce section until in July of 2019 he started getting sick again. By December 2019 he was hospitalized with a severe infection that caused a dramatic weight loss, extreme pain in his neck, back and shoulders, skin abrasions and extreme fatigue. He went from our hospital to Salmon Arm hospital to Kelowna hospital and back to our hospital numerous times. He had blood transfusions and a couple of surgeries to try to flush the bacteria out. All of his symptoms match with what the Health Canada warning said come with that bacteria so we started asking then for the doctors to test him. We were told then that there was no need for that test and that he had a staph infection.
When the COVID hit he was sent home from our hospital we were told because he was high risk that he would be safer from the virus at home. I then had to do infusions on him with massive amounts of antibiotics into a catheter directly into his heart numerous times a day and night and his condition continued to decline. They found that whatever bacteria he was fighting had started to eat away at his shoulder joints, collar bones and neck vertebrae, hence the extreme pain.
He was then sent the Kelowna hospital for an emergency surgery on his neck because the bacteria had attacked his spinal cord and there was a chance of him becoming a quadriplegic. The surgery was a success and he was sent back to our hospital and then home again to avoid the COVID. We asked the doctors in Kelowna and in Salmon Arm to test him for that bacteria and we got a hand written note back from the doctor saying that he was tested for that bacteria in 2017 and it was negative and therefore there was no reason to test him again. The information about the situation and bacteria on the Health Canada website says that patients that the machine was used on need to be tested regularly if they have prolonged symptoms of that infection, which he CLEARLY has and also that the bacteria has an incubation period of up to 4 years or more and will show a negative test while in the incubation period. When they tested him in 2017 it was only a year after the machine was used on him and therefore he would show a negative result. We have been trying to get him tested ever since and keep being told it is unnecessary. Things seemed to level out a bit after the neck surgery, but he lives in a constant state of extreme pain, nausea, dizziness and fatigue. To the point where he can't even leave the house unless it's for medical purposes. This is not a life and we are not ready to accept that this will be the way we have to live for the rest of our lives.
On March 3rd 2022, we had a regular appointment with our GP doctor here in town and one of the things we always ask about are for his feet to be checked because of his diabetes and it is well known that diabetics have issues with circulation in their feet and they can't feel injuries etc. When I asked how is feet were doing at that appointment our GP told us that he was "pleasantly surprised" by the shape his feet were in and that he had good circulation and pulse readings. Joey had been asking for some time to be referred to the foot specialist that comes to town because he wanted his feet looked at. In that appointment we were told that the referral had been sent out. We never did hear anything else about it.
Around March 25, 2022 he started getting very sick again. He was bed bound and fevered and in extreme pain. He asked me to look at his feet because he felt like there was something embedded in one of his feet. I did look at his feet and was shocked to see that there was an ulcer on the bottom of his left foot that had already started going black. We immediately got him up to the hospital and I started taking photos to document that progression of the infection. On April 5, 2022 our doctor looked at the foot in our hospital and immediately sent us to see the vascular surgeon in Kelowna. Our appointment was on April 8, 2022 in Kelowna with the vascular doctor who told us Joey was in a life or death situation and needed to be admitted to their hospital immediately to try to save his foot and his life. We admitted him that day. That vascular surgeon said he did not know what the infection was and that it was very serious. I told him about the faulty machine and that we had been trying to get him tested for that bacteria for 3 years now and that no one will test him for it. I told him about the Health Canada warning and about the symptoms he has had for the last 3 years and he promised to test him for that bacteria. Joey spent 8 days in the Kelowna hospital and that doctor did not come and see him, he was not tested for the bacteria and no one would talk to me about his condition. I left a message EVERY single day he was in there with the surgeon's clinic and he did not return my call. I told his clinic he was not calling so they told me to call his head nurse and I did that and left messages on her voicemail every day for about 7 days and she never returned my calls either. All the while his foot was getting worse. Finally I went and picked him up and brought him home about 10 days later and he went on outpatient therapy with IV antibiotics and wound care from our hospital in Revelstoke. When he continued to get worse they sent us back to Kelowna hospital and now they have amputated his left leg. The surgery was done by another doctor at the vascular clinic who did call me and tell me they were taking his leg below the knee and he also apologized over and over about the lack of communication. I told him about the bacteria and that we wanted him to be tested and he didn't even know about it. He also promised to test him for it and I told him that the information from Health Canada states that he should have been being tested regularly for the bacteria and that there were many factors to consider when doing the test otherwise it will just come back negative. He told me that he is not an infectious disease doctor and that he doesn't know about these things. I said that he should consult with one and he said he would. We still have not heard anything about the results and the infectious disease doctor has not gone and seen or talked to Joey. Joey is still in the Kelowna hospital now recovering from the amputation.
I have talked to Global News and they will be coming to do our story in the near future when Joey has recovered a bit further. We are going to have to get him some equipment such as a wheelchair and some equipment for around the house to make it more accessible for him now with one leg. We are mentally and physically exhausted from this ongoing journey and just want the proper treatment plan for him if he is fighting that bacteria that they keep refusing to test him for. We just want our life back and his quality of life to return to some level of new normal. We know this journey is far from over and are asking for any help that we can to prepare for the new situation. We are very grateful that he has made it this far and are grateful for any and all help. Below is the link to the Health Canada information about the bacteria and the faulty machine.
https://www.canada.ca/en/public-health/services/publications/diseases-conditions/risk-assessment-non-tuberculous-mycobacteria-contamination-heater-cooler.html#a2
There are also Global News stories on some of the other patients in Canada that have contracted the bacteria from their open heart procedures. You can find those on google.
I will try to update this page as often as I can and will definitely put the information on about our Global News story as soon as I have the information as to when it will air etc.
Thank you from the bottom of our hearts for taking the time to read our ongoing story and for any and all help that is given.
He seemed to be recovering at a normal rate, but due to his condition he could not go back to work at his trade and that seriously changed our income which led us to selling our home here in Revelstoke to pay off all of our debt and try to start fresh. We now live on disability which is barely enough to cover rent and his medications. Because it's CPP Disability (Federal) it covers nothing. No medical trips and expenses and no medications, at least not that we have been able to get and I have been working with a community program and social worker to help figure these things out and have still come up with no coverage. He went to work at a grocery store in the produce section until in July of 2019 he started getting sick again. By December 2019 he was hospitalized with a severe infection that caused a dramatic weight loss, extreme pain in his neck, back and shoulders, skin abrasions and extreme fatigue. He went from our hospital to Salmon Arm hospital to Kelowna hospital and back to our hospital numerous times. He had blood transfusions and a couple of surgeries to try to flush the bacteria out. All of his symptoms match with what the Health Canada warning said come with that bacteria so we started asking then for the doctors to test him. We were told then that there was no need for that test and that he had a staph infection.
When the COVID hit he was sent home from our hospital we were told because he was high risk that he would be safer from the virus at home. I then had to do infusions on him with massive amounts of antibiotics into a catheter directly into his heart numerous times a day and night and his condition continued to decline. They found that whatever bacteria he was fighting had started to eat away at his shoulder joints, collar bones and neck vertebrae, hence the extreme pain.
He was then sent the Kelowna hospital for an emergency surgery on his neck because the bacteria had attacked his spinal cord and there was a chance of him becoming a quadriplegic. The surgery was a success and he was sent back to our hospital and then home again to avoid the COVID. We asked the doctors in Kelowna and in Salmon Arm to test him for that bacteria and we got a hand written note back from the doctor saying that he was tested for that bacteria in 2017 and it was negative and therefore there was no reason to test him again. The information about the situation and bacteria on the Health Canada website says that patients that the machine was used on need to be tested regularly if they have prolonged symptoms of that infection, which he CLEARLY has and also that the bacteria has an incubation period of up to 4 years or more and will show a negative test while in the incubation period. When they tested him in 2017 it was only a year after the machine was used on him and therefore he would show a negative result. We have been trying to get him tested ever since and keep being told it is unnecessary. Things seemed to level out a bit after the neck surgery, but he lives in a constant state of extreme pain, nausea, dizziness and fatigue. To the point where he can't even leave the house unless it's for medical purposes. This is not a life and we are not ready to accept that this will be the way we have to live for the rest of our lives.
On March 3rd 2022, we had a regular appointment with our GP doctor here in town and one of the things we always ask about are for his feet to be checked because of his diabetes and it is well known that diabetics have issues with circulation in their feet and they can't feel injuries etc. When I asked how is feet were doing at that appointment our GP told us that he was "pleasantly surprised" by the shape his feet were in and that he had good circulation and pulse readings. Joey had been asking for some time to be referred to the foot specialist that comes to town because he wanted his feet looked at. In that appointment we were told that the referral had been sent out. We never did hear anything else about it.
Around March 25, 2022 he started getting very sick again. He was bed bound and fevered and in extreme pain. He asked me to look at his feet because he felt like there was something embedded in one of his feet. I did look at his feet and was shocked to see that there was an ulcer on the bottom of his left foot that had already started going black. We immediately got him up to the hospital and I started taking photos to document that progression of the infection. On April 5, 2022 our doctor looked at the foot in our hospital and immediately sent us to see the vascular surgeon in Kelowna. Our appointment was on April 8, 2022 in Kelowna with the vascular doctor who told us Joey was in a life or death situation and needed to be admitted to their hospital immediately to try to save his foot and his life. We admitted him that day. That vascular surgeon said he did not know what the infection was and that it was very serious. I told him about the faulty machine and that we had been trying to get him tested for that bacteria for 3 years now and that no one will test him for it. I told him about the Health Canada warning and about the symptoms he has had for the last 3 years and he promised to test him for that bacteria. Joey spent 8 days in the Kelowna hospital and that doctor did not come and see him, he was not tested for the bacteria and no one would talk to me about his condition. I left a message EVERY single day he was in there with the surgeon's clinic and he did not return my call. I told his clinic he was not calling so they told me to call his head nurse and I did that and left messages on her voicemail every day for about 7 days and she never returned my calls either. All the while his foot was getting worse. Finally I went and picked him up and brought him home about 10 days later and he went on outpatient therapy with IV antibiotics and wound care from our hospital in Revelstoke. When he continued to get worse they sent us back to Kelowna hospital and now they have amputated his left leg. The surgery was done by another doctor at the vascular clinic who did call me and tell me they were taking his leg below the knee and he also apologized over and over about the lack of communication. I told him about the bacteria and that we wanted him to be tested and he didn't even know about it. He also promised to test him for it and I told him that the information from Health Canada states that he should have been being tested regularly for the bacteria and that there were many factors to consider when doing the test otherwise it will just come back negative. He told me that he is not an infectious disease doctor and that he doesn't know about these things. I said that he should consult with one and he said he would. We still have not heard anything about the results and the infectious disease doctor has not gone and seen or talked to Joey. Joey is still in the Kelowna hospital now recovering from the amputation.
I have talked to Global News and they will be coming to do our story in the near future when Joey has recovered a bit further. We are going to have to get him some equipment such as a wheelchair and some equipment for around the house to make it more accessible for him now with one leg. We are mentally and physically exhausted from this ongoing journey and just want the proper treatment plan for him if he is fighting that bacteria that they keep refusing to test him for. We just want our life back and his quality of life to return to some level of new normal. We know this journey is far from over and are asking for any help that we can to prepare for the new situation. We are very grateful that he has made it this far and are grateful for any and all help. Below is the link to the Health Canada information about the bacteria and the faulty machine.
https://www.canada.ca/en/public-health/services/publications/diseases-conditions/risk-assessment-non-tuberculous-mycobacteria-contamination-heater-cooler.html#a2
There are also Global News stories on some of the other patients in Canada that have contracted the bacteria from their open heart procedures. You can find those on google.
I will try to update this page as often as I can and will definitely put the information on about our Global News story as soon as I have the information as to when it will air etc.
Thank you from the bottom of our hearts for taking the time to read our ongoing story and for any and all help that is given.