My Lord God, I have no idea where I am going. I do not see the road ahead of me. I cannot know for certain where it will end. Therefore will I trust you always. Though I may seem to be lost and in the shadow of death I will not fear for you are ever with me and you will never leave me to face my perils alone.(Thomas Merton)
If you scroll back to the first journal entry it gives the backstory of how this adventure began.
It's true - I've been nominated for the Most Inconsistent Poster on Caring Bridge Award again this year! It doesn't come easily - procrastination actually takes a lot of work. So I hope I can count on your vote...all 1,293, ah...all 578, er...31, um...ok, both of you who still get these updates. (Thanks, Mom...)
Actually, there are a number of things that have happened since I last posted in May. I had previously (late winter-early spring) been back at Strong for GI bleeding, caused by a large pre-cancerous polyp, which was removed endoscopically. Follow-up tests revealed another growth in the same area so in late June I returned to my smartly-appointed suite at Casa de Strong and had that removed. I told them if they found anything else that didn't look right to just take it out too. When I was in recovery, the first thing I remember was several nurses looking at my chart and giggling. I don't know what they did but everything seems to be working so I'm not going to ask.
There are two things that happen when you have congestive heart failure. I sometimes visualize it like a graph with two lines; the first line begins at the upper left corner and goes in a very gradual downward direction until it reaches the bottom right corner. This represents the inevitable decline in heart function (and related complications such as kidney, liver, lung and immune system issues) from CHF's first diagnosis to what my IT friends refer to as a "total system failure." (In other words, time to order that decorative urn from Costco.)
The second line is the more interesting of the two. It too begins on the left side of the graph, but at the bottom left corner. As it progresses toward the right there should be occasional dramatic spikes where it jumps upward. This represents the improvements in organ function and overall health that can occur when treatment works well. (This may mean drug therapy, a heart transplant or, as in my case, implantation of an LVAD device.) The peaks vary in frequency and duration but they will never exceed the height of the first line. The reason is because, while the LVAD takes over the function of pumping blood through the left heart chamber, it can not produce a physical outcome in the heart or related organs that is higher than the person's rate of decline.
The variables are innumerable. Every person has a unique physiology; a person's overall health profile may preclude the use of some therapies; everyone has a different response to the various drugs and medications used to treat heart failure. That's why outcomes are so unpredictable and even small things - like going a week without excessive bleeding caused by blood thinners or vomiting or diarrhea caused by different meds - are considered victories. I feel very blessed to be able to say that since that last hospitalization I've felt the best overall that I have since the LVAD surgery in April, 2013. In other words, I'm riding one of those upward spikes of the second line and like a bronco rider, I'm going to hang on as long as I can.
I was talking about this with a good friend and former co-worker last night and when he asked what the long-term prognosis is, I laughed inside. In a flash I thought back to that morning five years ago when I thought I'd be having a couple meetings at the office, then prepping for the afternoon show and instead found myself in an ambulance being rushed to the hospital. It was touch-and-go for hours, days really. I thought of the look on Connie's face when I coded and they rushed her out of the room because they didn't want her to see what might happen. I thought of how many hundreds of times, while I was in the cardiac unit waiting for a transplant, I prayed, I cried, I tried to make sense of things. I wondered how my son, Justin, would handle it if I died. (My father died unexpectedly when I was twenty-five so those thoughts were inescapable.)
I told him, "Things are as good as they can be right now and for that I am more than grateful." He nodded. "But," I added, "it could all change tomorrow." And that's the reality we all live with. It doesn't matter who we are, the status of our health or the size of our investment portfolio. It doesn't matter if we've accomplished great things in life or if we feel like a failure - that somehow, life got away from us and we're not sure where we are or where we belong. It. Doesn't. Matter. It could all change tomorrow.
So, if anything in your life is going well, be grateful. Don't ignore the small things or what others take for granted. Nothing is that unimportant. When things aren't going well, don't despair and do not curse God. What we are able to understand is so little in comparison to the totality of the purpose for our lives that it may feel like we're losing everything. We may. But be cautious in assigning blame.
Above all, don't lose hope. What is hope? It is everything that lies one breath, one footstep, one thought from where you are.
The Lord bless you and keep you. The Lord make his face shine upon you and be gracious to you. The Lord lift up his countenance upon you and give you peace. Amen.