Better Than Expected

Yesterday I was at the cardiac clinic in Toronto for another round of tests to update the status of my degrading heart. I am a patient at the Peter Munk Cardiac Centre, have been since 2007 when I was first diagnosed with my heart problems. I have likely said this before but I was lucky to first have seen a Sunday CNN morning show article about the success of Heather Ross and her transplant recipients. The following Thursday at my weekly GP visit to measure vitals I mentioned to my doctor the article and could she get me a referral to see Dr. Ross. A couple weeks later I was in Toronto General having some testing done and met the revered Dr. Ross. At the time she said that t was clear that I was not in imminent need for transplant but as time moved forward and my status changed that I could always reach out as I was now forever her patient.

Several years ago I transferred my care from Hamilton Health Sciences to the University Health Network and more specifically to the Cardiac Centre in Toronto General. I was placed under the care of cardiologist Dr. Natasha Alexsova and could not be in ,more capable hands. An issue with the programming of my pacemaker has been resolved, a mitral valve clip inserted into my heart to hold everything together and as of late I am in the assessment protocol for heart transplantation.

The visit I just had was one more on the road to transplantation. I met with an anesthesiologist, had another ride on a bike to determine my oxygen use under load and had the pacemaker reports downloaded. I also had an updated list with Dr. Alexsova to review were we were on the journey.

In June when I road the bike I did not do very well. And the change was considered dramatic and life threatening. Afterwards, the conversation with Natasha was one I have had twice before, that of your really sick now Scott and we are at the end of this current treatment method. Please prepare for the next phase which may or may not be available, which is transplantation. In other words, get your affairs in order, the end is nigh.

A definite part of transplant discussions are the outcome times. Here in Canada where medicine is socialized treatments are not doled out willy nilly. If you qualify for transplant, you are only going to have the operation once. If you need another 15 years later that is not in the cards. So extension of life prior to transplant is of paramount importance. As the doctors say, once you are transplanted, the clock starts ticking.

So my goal is to maintaining my functioning for as long as possible to extend the use of the original equipment. The bike test yesterday hold promise that this may be the case. The June test sucked but this past test yesterday showed improvement, not necessarily to the extent of where the function was 2 years ago but improvement none the less. A little is better than none or a worsening.

There is still no real explanation why my body functions in the way it does. IOt seems whenever I meet a new doctor in this journey they are surprised by the patient that shows up. They are expecting someone not as fit or vigorous as I am. I think many people who only casually know me scratch their heads when they hear of my condition.

The bike result was good news. Further potentially good news is that the protocols for the drug testing are being rewriten so as to be able to include me once again in the testing regimen. The remarkable improvement I felt in general well being during the two week break-in period hopefully will be available to me again. This really made me feel better. Apparently there is a genetic reason for this potentially and the next round of blood work will include another genetic test.

I also ask my doctor what else I can do to help the team out with. The issue came up as we discussed the differences between protocols in the US and here in Ontario. And mostly the differences have to do with funding. Technologies are expensive and here in the great social north some have to be foregone as the cost benefit doesn’t seem to match up. Such is the case with preserving the donor heart. In the US the removed heart is connected to a machine which continues to have the muscle work and blood circulate through it. This has not been approved for use yet in Ontario.

So maybe they will put my communication skills to work on behalf of us patients in transplant protocols. Whether I am used to speak to donors or lobby at the government level, either would be fine.

Today I had breakfast with an old friend. We have not broke bread in several years. Yesterday I was praying to be of service to others with medical issues thinking that fundraising and lobbying would be the best use of my skills. But no, God has other plans of course. My friend has developed a rather serious lung issue that necessitates transplantation. He like me has recently had the discussions regarding the ticking clock after transplant. And like me is dealing with the daily changes to his health that bring about changes in emotion and relationship issues with those around us.

He said it was the first time he has had someone to chat about all this who actually understands. So maybe that is going to be another avenue God will use me to help his kids. And in doing so help myself.

Today life is good.