I’m not sure I would have had another opportunity to learn about how fragile our health is without experiencing the events of the last 3 months…
It was almost 3 months ago that we first learned of my husband J’s heart condition and if that were all the medical issues we had to deal with, we would have had our hands filled. Looking back on everything that’s happened, I’m reminded of a quote I regularly share with friends and family when they face what seems insurmountable crises in their lives. Except now it is me that I’m counseling.
“God will never give you more than you can handle.”
Well, it seems He has some unbelievable faith in J, in me, and in our family unit. If you aren’t yet up to speed on the initial situation, I encourage you to read up and come back another day – to read the rest of this may be more than you can handle in one sitting.
For the rest of you, I apologize for the delay in the online update. I have spent most of my time keeping a busy household running and maintaining sanity during a very trying time in our lives. I finally feel comfortable sharing all that has happened, considering J just had his follow-up appointment with his surgeon yesterday, that has cleared him to return to what the rest of us would consider ‘normal life’ – i.e. driving, working, exercise with limits, etc. I am truly amazed at the determination J has shown in recovery from his procedure and medical complications.
As it turns out, there are many risks that come with undergoing open heart surgery to replace a defective valve. Even before the procedure, in addition to the risk of aortic rupture or dissection from the aneurysm, because of the condition of J’s valve, he was at increased risk of a heart infection, endocarditis, which is extremely rare in the general population, but not so rare with defective or mechanical valves. Endocarditis presents with symptoms such as fever, shortness of breath, and overall fatigue, all symptoms that J began to recognize almost immediately after his diagnosis. The primary symptom, fever, is one that will prevent any surgeon from operating on a patient, barring an emergent situation. And so, we spent 3 weeks waiting for J’s low grade fever to break. During this time, we spent 4 nights in the ER and J had too many tests to count, trying to get to the bottom of the origin of the symptoms. Fortunately, endocarditis was ruled out early, but on October 24, when J finally was cleared to have his surgery, we still did not have an explanation for the fever and ill feeling; we all (doctors included) chalked it up to a seasonal flu-like virus and braced ourselves for a very trying recovery.
J was wheeled into the OR on the Monday morning, October 24, and that afternoon, his surgeon met me in the waiting room at Providence St. Vincent Heart and Vascular Institute to report that the procedure went exactly as planned and that J was recovering well in the ICU. The next 2 days were a struggle for J, but a relief to me to see him on his way to recovery. I remember laughing as he reported his fantasy football reports coming out of his morphine fog, and then when he continually referred to his amazing nurse, Erika, as Nurse Jackie. It seemed even in the toughest times, J kept his sense of humor.
Unfortunately, the relief was short-lived. The day after the surgery, J reported a strange feeling, or non-feeling in his left leg. After 2 days of continued numbness, J’s surgeon called in a neurologist who ordered an MRI and confirmed that he had suffered a minor stroke during the surgery.
To say that this was a blow is an understatement! But for the purposes of brevity, I’ll say that J dealt with the news with amazing courage; I agreed wholeheartedly with his resolving statement that day, “Well, it could’ve been worse.” I have no doubt his determination was somewhat due the reassuring words from the wonderful doctors, nurses, physical therapists and specialists who reinforced their belief that J would recover all of the functionality of his leg. This began J’s mission to relearn how to walk and to build up his strength to get out of the hospital.
We were thrilled when J was released on Saturday following the surgery – day 6 post-op – just in time for him to watch the USC/Stanford football game on his own flat screen TV. (He informed his surgeon of this goal even before he entered the OR and he did it!) And so began the slow path to recovery at home that included walking, breathing, tracking medications and appointments with specialists. All was looking well until 2 weeks post-op when J recognized his resting heart rate was elevated, between 110 and 130bpm . His cardiologist requested he come in that day for an EKG and immediately referred him to have an Echocardiogram to check for pericardial effusion, or fluid buildup around the heart, another common complication of open heart surgery. This condition when severe would cause elevated heart rate and could ultimately damage the heart function left untreated. (As if we didn’t have enough to worry about…) The echocardiogram showed only slight effusion which did not concern Dr. Beckerman, though he recommended J come in for a follow-up echo in 2 weeks. His reassurance was only slightly helpful, until 2 days later when J reported his fever had returned along with his difficulty breathing.
Long story short, J’s cardiologist referred us to an infectious disease specialist to get to the bottom of the fever of unknown origin (FUO). He was honest in saying he had no other explanation for the symptom and felt it was critical that we get to the bottom of it. It was a week and a half later when Dr. Cameron Cover discovered that J had a rare strain of the Epstien-Barr virus – aka “Mono”. It turns out he likely contracted the virus while we were in Mexico 5 months prior and was fighting it throughout the whole episode of dealing with his heart condition. Looking back, J remembers the original reason he went in for the physical was because of feeling run-down and tired, classic symptoms of mono, but because he was dealing with a rare strain, the traditional mono spot and blood cultures were unable to pick it up.
At the end of the day, I am so relieved to at least be able to see the light at the end of the tunnel. J is still very tired and by no means back to where he was prior to the surgery. But having witnessed his metamorphosis over the last 12 weeks, I can only be truly amazed at the state of medicine today! We are so lucky to have access to truly the top doctors in the Portland area, arguably in the country. I’ve listed the doctors we’ve worked with in case any of you are in the situation of needing a particular medical specialist.
Dr. Jamie Beckerman, Cardiologist
Dr. Jeffrey Swanson, Cardio-Thoracic Surgeon
Dr. Ted Lowenkopf, Neurologist
Thanks to all of you for keeping us in your thoughts and prayers! It certainly is appreciated…