His Power Is In Your Hands!

When we were about the age that our grandchildren are now, our upbringing was of the free-range kind. Basically, we were sent out to play and admonished to come in when the six o’clock siren went off. Usually Saturday mornings were spent watching cartoons while we ate breakfast and doing our chores before we were free to set off on our adventures. Wildly different than anything we had ever seen before were the early anime offerings of Speed Racer, Astro Boy and Gigantor in the mid 1960’s. No Looney Tunes these! Wide eyed kids with an almost James Bond arsenal at their fingertips. Their theme songs were simple earworms that would not give up.

As Rich had limitations while his meds were being optimized, we figured a Roomba would help take care of what are still, in our adult lives, Saturday chores. So it was fitting, that, given the option, our little self-propelled vacuum would be named after one of those anime characters: “Gigantor the space aged robot, He’s at your command….” Yes, please vacuum.

My phone could and did set him on his path around the house, sucking up debris and dust. If I was at work and Rich activated him, I would get messages when my space aged robot got into trouble and these would make me laugh, “Gigantor needs your help” or better yet, “Gigantor is stuck near a cliff!”

A cliff.

 

 

Lately, it has been feeling like our household is stuck near a cliff; a precipice that may or may not be the way we want to go.

A couple of weeks ago, Rich had another episode of syncope; he blacked out without warning while walking through the house; no cliff dive this… he was walking on a flat surface without obstructions. He has taken care when getting up from sitting to center himself before moving to avoid any dizziness or lightheadedness. But there are times when a quick drop in blood pressure will manifest and hit unexpectedly. Or was it an irregular heartbeat?

This time, his fall landed the bulk of him relatively safely on the dining room rug. His shoulder wasn’t so lucky. A huge open scrape went down his arm, his shirt having ripped. From what we can tell, he hit the outer corner of the baseboard molding of the bookcases. Sharp. Mom heard the fall and sat with him and did her best to help him, bringing a chair to his side for him to push himself up on. When I got home, we cleaned the sizeable wound and did what we could to get him comfortable. Bruises began to blossom.

We meet with an orthopedic and he tells us that the floating calcification he sees on the x-ray may have been in his shoulder before; we have no slides to tell us when this occurred. His take is that we just need to allow the inflammation to go down and see how Rich’s shoulder feels from there. A well placed cortisone shot helps in the days to come and Rich is advised to do mild exercises as home physical therapy to avoid frozen shoulder syndrome.

We had a follow-up with our Heart Failure guru regarding the fall as well as to discuss the results of the CPET testing to see if a pacemaker may be of benefit to him. She spouted numbers and statistics as I frantically jotted down notes. Then she went into the down and dirty bottom line:

The overall test results indicate something called oscillatory breathing… almost a type of apnea… while exercising. This ties in well with her previous decision to have Rich evaluated at a sleep clinic. Oscillatory breathing is very much associated not only with CHF but also with the centralized sleep apnea she suspected. The guru offers to see if she can get us an earlier appointment than the July one we currently have. Then she’d like to have another CPET done after to see if there is improvement with whatever suggested therapy the sleep group has. CPAP or BPAP therapy in the overnight are generally the solution. And this helps the heart to rest and heal. The option of a pacemaker for support that we discussed in our last post is now a stronger contender given the results and Rich’s fall …and we’re getting closer to yes!

To add to the data and to perhaps help find a definitive cause to the syncope episodes, we discuss heart monitoring options. The best choice seems to be a loop monitor which would be implanted below the skin (Borg once more!) and will provide downloadable information on heart rhythms. After her discussion with our cardiologist, it’s decided to go forward with this. In two weeks, our One of Ten (formerly of Nine) will get this procedure done and another level of data will be added to the pacemaker decision. We will now be welcoming a cardiac electrophysiologist to our list of experts. There is a measure of relief with this; to have the support of some monitoring and get some real-time information as issues occur. If needed, again, a pacemaker will add to the ongoing support.

We also find we should revisit one of our meds that had been with us since we began prednisone at the beginning of this journey but was dropped two years ago. Zoloft had helped with the depression that prednisone brought upon the adrenals. When the pain management group gave Rich Cymbalta to help with neuropathy pain, they kept the Zoloft active as well. For a year he took both. And then we slowly weaned off, keeping only the Cymbalta for the neuropathy. But Rich has felt the difference.

Now that we’re coming to a year of continual med changes and tweaks, non-stop testing to optimize energy and healing, and a whole lotta everchanging rules, we think it’s time to consider Zoloft again. The cortisone shot Rich received in his shoulder could not have helped; steroids always depress his adrenals. And it is well known that chronic illnesses of all kinds can bring a discombobulation that is tough on the patient and that is detrimental on this path. Again, we welcome this available support.

Lastly, our doctor admonishes us to keep to the clean way of eating we did when we first met last year. With all the changes in the last six months, we’ve gotten a little off track. It’s time to pull back from that cliff we, like our Gigantor, were stuck near. If we need to send out a distress signal, we have a whole bunch on our team to respond, but ultimately, we are responsible for doing everything we can on our end… like our vacuum, we need to be reset onto firm ground, set the big button to GO and start anew.

Bigger than big,

taller than tall,

Quicker than quick,

stronger than strong.

Ready to fight for right, against wrong.

Gigantor the space aged robot,

He’s at your command.

Gigantor the space aged robot,

His power is in your hands.