Sound familiar? Well, it would if you're a fan of the Indigo Girls....it's part of the lyrics to one of their songs "Closer to Fine." I heard this song a couple of weeks ago on the radio while driving home from the hospital, solo. That's right. I had to leave Kevin once again at the hospital. It's taken me a couple of weeks to catch my breath so I'll do my best to explain.
I certainly have to rewind a bit here. October 7, 2010 Kevin had heart failure. As much as I would like to forget this day, I simply can't. His heart failure stumped more than a dozen doctors at two different hospitals. All tests came back negative. No blockages. No nothing. Just heart failure accompanied by all organs approaching failure. It was believed that a virus attacked his heart causing cardiomyopathy. So fast forward to July 5, 2011. This was the day my husband received his new heart. A total life changing moment. Another day I will never forget. I remember every moment, every update from the operating room, what I was wearing, how many hours I was awake for because the adrenaline in my body took over, the smells, the people in the waiting room, the kiss before he was wheeled off into the operating room....... you get the idea.
Kevin's new heart is fantastic. We couldn't be more thankful (I'm sure you've seen my youtube video of thanks by now if you've followed our story) to the donor family, whom still remain a mystery to us. Every biopsy, his first angiogram, labwork, etc... no infection, no rejection. The transplant team couldn't be happier with us. It is certainly wonderful to see some of the same doctors that once delivered bad news to me with nothing but smiles from ear to ear when we go to clinic.
OK, let me rewind a bit more now. About 14 years ago, every once and awhile, Kevin would have these strange episodes. How to describe them? Ummmm, his blood pressure would skyrocket, pulse would drop, dizzy... and the episodes were honestly few & far between. Years went by and he consulted many doctors about these strange episodes and pretty much every doctor told him he was young, nothing to worry about, it was just possibly a vasovagal syncope, the blood pressure was just something genetic since it runs in the family. Well, WRONG. Fast forward to about 6 weeks post transplant... exact same episodes start happening. [let me describe an episode: blood pressure spiking to 219/127 with dizziness] Doctors weren't exactly too concerned about the episodes...chalking it up to just normal post transplant sort of stuff. Prescribed a beta blocker, checked his bloodwork, etc. A week goes by... exact same episodes. Beta blocker doing nothing. Now more than ever we are both getting stressed out about the situation. More testing begins... and by testing I mean the usual everything under the sun kind of testing because Kevin has a new heart, they've got to keep this new heart as healthy as it is. One of the tests was a 24 hr urine catch. 24 hrs go by, we drop it off at the lab on a Thursday. We go to clinic on Monday for our usual biopsy/clinic appointment.....
"when you hear hoofbeats, look for horses, not zebras."
I loathe the above saying because my husband is the zebra. Plain and simple. Zebra (I'm not laughing).
The 24 hr urine catch detected a pheochromocytoma. I'll save you the trouble of googling this. In lamens terms, my husband has a rare tumor on his adrenal glands... hence sending adrenaline rushes to his heart which over 14 years of sending such rushes to one's heart and causing your blood pressure to skyrocket, well, it can cause heart failure if it's not detected. Rare. Zebra.
I'll remind you as I type this blog entry, Kevin is ten weeks post transplant. The plan? To remove the tumor. BUT, you can't just remove the tumor so haphazardly.... he's been on medication to control the episodes. Surgeons have to be very careful about removal as it may have grown into his pancreas in addition to being attached to his left adrenal gland. They won't know "for sure" until they open him up. All of the scenarios (both best & worst case) have been given to us.
Why wasn't it caught before? I've asked this to everyone. If you're not looking for a rare tumor, then you're not going to see it. All of his prior CT scans... had they been 1 inch lower, it probably would have been caught. Honestly though I'm not here to place blame...the whole he said she said... all of the testing.. need I remind you of all of the bleeding out of control... all of the open heart surgeries.....it's extremely counteractive to think negative.
My husband is here. He's alive. We got our wishes granted. He survived heart failure & living with an LVAD. We survived the waiting and he survived his heart transplant. Is it too much to ask for one more wish? Technically if I were asking a jeannie for a wish I'd still have one left, right? Can it be that tumor removal goes smoothly & that pathology tells us the tumor was benign?
"well darkness has a hunger that's insatiable and lightness has a call that's hard to hear"......
In listening to this line in this song once again, well, in our case, the lightness .... that call... like it was back in October 2010... it's hard to hear at the moment. Am I giving up? Absolutely not. Need I remind you my parents raised me better than that. Our family never gives up(Jersey in the house). I'm just pointing out how that almost one year ago, the exact same call was so hard to hear.... I tried so very hard to quiet my days sitting bedside with Kevin to answer it when in all reality Kevin had control over the answering. Luckily for me & our boys, he's a fighter. Presently, this tumor has the control over the answering. Let's hope when it answers it says "benign."
I leave you with two pictures. Photographic medicine if you will. The very same day my husband was cleared to actually "pick up" our boys again... it had been over ten months.... it was the very same day we were informed of the "zebra" in the room....only having it taken away as to not jostle said tumor.
As I would say in our living with an LVAD days, where there is a will, there IS a way.