When we were pregnant with our third child, we were told to attend a refresher Lamaze class as ten years had passed since our last pregnancy. Figuring a free tote bag and some diaper coupons would be worth it, we dutifully went. In the middle of the class, the nurse leading the group told us about a new doctor in the practice. Fresh off the obstetrics assembly line, no one wanted to give birth on his watch. They encouraged us, however, to make at least one appointment with him as we neared our respective due dates. Meet the man in case he is on duty when your water breaks.
We did and as we walked out of the office, we said to each other, if this was our first pregnancy, we’d be scared shitless! This guy gave us every worst-case scenario, told us to get every test in the book. He had new knowledge and he wanted to share it…he couldn’t help but share it. By the time we left, there was the potential for a real freak-out. He led with disaster.
As fate would have it, he was the doctor in the practice that was on call and ultimately, the guy we were glad to have by our side when an emergency c-section was needed. His gentle yet sure manner was a perfect counterpoint to this new development.
Today we have seen more specialists and had more procedures than one would think possible in one day.
After a full afternoon of waiting for the angiogram to be done Wednesday, it was finally our turn. The expectation the doctors (and we) had was that the pesky left bundle branch blockage would show to be a pesky nuisance, the root of all discomfort. They’d clear up the blockage, pop a stent in place, and voila! Our ejection fraction would adjust itself from its normal 40-45% from the early chemo days to a health 100% and we’d be running marathons in no time, despite the fact that we don’t run marathons.
We do, however, have one of Rich’s original goals in place… we’ve booked a trip to Ireland in September. In three short months we’d be, with friends, experiencing the often wild and awe-inspiring island country from top to bottom and round again. Waterfalls, rivers, mountains, ocean cliffs, ancient ruins, pubs, villages… the stuff of literature and dreams. With Arlene and Kevin doing the driving and, as before, our support and companions, we’d see our goal come to life. We find we’re telling everyone so they understand our personal goals… This little tune up of ours, is merely a tune up to complete our preparations before we’re flying off to the land of my fore-father’s birth. And one of Rich’s dreams. Will the results of this hospitalization affect those plans?
Rich came out of that operating room and, test not quite complete, we’re admitted for a stay in the cardiac unit. Our tune up is not so quickly done. Rich’s heart has had since March a mere 15-20% ejection fraction. Time has not improved it. There is fluid in the pericardium which is the congestive heart failure that was suspected. But not only the left side of his heart is weakened. The doctors are dismayed to find the right side is weakened as well. The low blood pressures he has been experiencing, this angiogram and the tests that are to come will show that heart failure is the right description of what he has been experiencing. His blood hasn’t got the oomph to make the circulation effective… the pump is broken. Our own cardio doctor is recommending that we be seen here by the cardiomyopathy group.
Rich has been given a double dose of Lasix and admitted to the cardiac ICU floor; the CCU. Once more, he in a hospital bed, me in the standard vinyl recliner, and we settle in for the night, looking forward to the morning rounds where we’ll get some answers. As always when in crisis, we’re glad to be where we are.
One of our first doctors to stop in is from the cardiomyopathy group. She gives us a brief rundown on Rich’s condition and how it applies to her specialty. She applauds and approves the ketogenic way of eating we do. She will stop in later in the day.
When we do see her again, her demeanor has changed. She begins discussing what our options for treatment will be for the heart failure Rich is experiencing. Her opening is about heart transplants. Wait, what?! We went from expecting a quick stent procedure to ripping out his heart? She discusses the benefits of having the transplant assessment done in conjunction with the other evaluative testing Rich is undergoing in order to have that all in place.
While it makes a certain sense, it reminds us of that obstetrician 26 years ago who felt the need to give us all the doomsday possibilities, so eager was he to impart his new-found knowledge. Instead here we are listening to grant money, no cost to us thanks to a grant and adding to the growing prestige of the heart program in this hospital. Wow, we hit the jackpot! She ends with “but of course, our goal is to leave you with the heart you were born with and find other solutions first.” Alrighty then. Better. Because a groupon for a transplant is just too bizarre.
We listen to the rest of the options including a heart pump which would entail another four week hospital stay or simple medications… the last being the treatment of choice. Visions of Ireland begin to fade.
In between that first and second conversation are the tests, procedures and consults. His ejection fraction still at 15% is confirmed. Next, they stop his current heart meds and begin with Milrinone which is to help the contractions of his heart so the flow of blood will be stronger. After a few hours to let the meds begin to do their work, they feed a swan catheter into the artery in his neck. They will use this, while it is all hooked up to a monitor, to measure his heart output or how well the pumping action is improving. Improvement being our person preference! Twice they try and fail. His room, set up as a sterile operating room, looks like a crime scene. It’s decided that they will go to the cath lab to use some radiography to guide them along. Turns out some scar tissue from his chemo port needed to be cleaned up and then they were set. We thought what he was getting would look similar to the triple lumen that was used in the stem cell unit. Discreet. What he now sports looks like an array of medals on epaulets; his shoulders dripping with access points off a slew of IV tubing. And the catheter’s end, coming out of his neck, forms a swan neck type curve and connects to all these medals of honor.
There are x-rays, sonograms, attempts to insert an A (arterial) line in Rich’s arms for additional monitoring. His veins are too compromised due to his condition. The odds are they will plump up when the pulses are improved. It’s decided to wait 24 hours and try again.
With all the invasive procedures and contrasts used for helping us to find answers, as well as mentally processing the unexpected diagnoses and possible treatments, the night is uncomfortable on a number of levels. Sleep eludes us. But there are signs that these new meds are working. Belly bloat way down and breathing eased. It’s a busy night and we hope we’ll have time for rest in the coming day.
The good news comes early in the cardiac care unit. An x-ray is needed daily to check the placement of the catheter. The readings that are coming from the monitor hooked up to the swan catheter are more than we could have hoped for. The Milrinone is helping Rich’s heart and besides the expected changes that will bring, we’re thrilled that his oxygen levels, which had been anywhere from 80 to 100 are found to be a full on 100% O2 saturation without any supplemental oxygen. This truly proves that so much of what our pulmo doctors have suspected.
Finally, the daily weigh-in. In 48 hours, Rich has lost twenty pounds of water weight. The fluid around the heart in the pericardium and in his belly is lessened. Hydralazine is added to help open the veins to let the improved output flow.
The downside to these meds are that they give his creatinine levels a slight rise. All tests have shown that his kidneys are clear of any issues other than damage that is also chemo induced. Our nephrologist feels that the steady elevated numbers have been stable since his cancer treatment so our patient’s higher than the norm numbers is something we’ll monitor but will not interfere with. This added blip from the new meds is explained by her in a way that proves her compassion. “Our main concern is Rich’s cardiac health and his personal well-being. If his comfort and daily life as well as his cardiac health needs these medications, we can be comfortable with this new number for his kidneys.”
It’s also felt that, like his pulmo function, his kidney function will ultimately head in a healing direction and thus better numbers as his cardiac function improves. That this doctor is looking at the whole picture of living life confirms so much for us. This team of caring health professionals have blessed us with their knowledge and persistence.
The plan now is to tweak medications to optimum levels, currently adding in and create the balance Rich needs. Once those are set up using IV infusions, we’ll then transition to oral meds for home use. Making sure heart and lung function maintain improvement and reach the goals we need to go home is the next step. Monitoring and less and less invasively through the weekend, we expect optimistically to be here til mid-week.
Lastly, our cardiomyopathy doctor, the one with the heart transplant conversation stops by again. She’s thrilled with the turn-around that has occurred. Before she leaves, she enthusiastically said “Remember that horror we talked about yesterday? Forget it. Forget it all. Those needs are good and gone!”
Tonight we expect to sleep soundly.