Wednesday, September 28, 2011

third time is a charm

I blog because it's cathartic.

First time = heart failure & LVAD
Second time = heart transplant
Third time = pheochromocytoma tumor

With Kevin's surgery approaching for this tumor to be removed, I'd honestly like to forget everything. Now, I'm sure there are people reading this thinking "oh she should be happy they found the cause of his heart failure." Well, let me tell YOU something... we closed the god damn door on heart failure right after he received his new heart. This new tumor being detected just re-opened that very door as well as turning our lives upside down once again. I'm tired of people walking up to me telling me how I SHOULD feel about this tumor. I'm exhausted over the conversations about the tumor and it's actually caused insomnia for me.

I'm just asking for someone for one minute to put themselves in my shoes or Kevin's shoes for that matter. Imagine your post transplant life is going smoothly then SLAP right in the face. Kinda like when that ICU doctor came into the room to tell me Kevin had coded, was on life support, and how he took all of the air out of that waiting room. Let's add to the fact that it's one week from the anniversary of his heart failure. October 7 is a day I really don't want to remember but the memory of it all just isn't as easily erasable now with this tumor showing up.

How am I doing? Another question I can't stand. Talk to me AFTER the tumor has been removed and Kevin is sitting up in bed complaining about how hot it is in his hospital room. THEN and only then will I truly be able to answer the question "how am I doing?"  I need a guarantee that these episodes won't be coming back. It rips me apart inside to see Kevin in so much pain. I need some sort of reassurance that we will resume to our usual every day activities soon after discharge. That the only time we'll see the inside of a hospital again is when Kevin has surgery on his arm/hand.

This time around we prepared like we did for transplant. Organized. Set up babysitters. Preschool drop off/pick up. His surgery originally planned for this past Monday was postponed. Supposed to be admitted today. That too has changed. We just have to arrive early before his surgery. We understand things change but this put a wrench in the already organized planning for our boys. Scrambling around at the last minute is something I loathe. Asking for favors last minute drives me insane because I hate asking for help and then to do it last minute.... all this just adds to my stress level.

Our boys... our sweet little Star Wars loving boys. Explaining to them this time around was somewhat humorous. It went something like this:

Us - "Daddy has to go back to the hospital again."

Kaeden - "You're getting a new heart AGAIN?"

Us - "No, Daddy isn't getting another new heart."

Quinton - "You're getting your arm fixed then?"

Us - "No, not that either. Daddy has to have an operation to have a tumor removed. The doctors found a tumor inside Daddy."

Both of them looked at us and said "tumor? Oh OK."

I'm guessing tumor doesn't sound as bad to a 4 yr old as transplant does but the emotions are running high for sure. The constant chatter about Daddy this and Daddy that....telling their friends that Daddy has a new heart but he's getting an operation in the hospital. Or that they're sad during the day because they're going to miss us both....Mommy visiting Daddy and Daddy in the hospital.

In the end, I'd like to say that heart transplant seems like a breeze compared to what we're enduring now. Where there is a will, there is a way. The positive in me will always shine through. The love Kevin and I share and the love we have for our boys will always carry us through. And we WILL get through this because we owe it to our donor family. We got our second chance....this tumor is just a bump in the road of our long life together.

Wednesday, September 14, 2011

closer to fine ?

"well darkness has a hunger that's insatiable and lightness has a call that's hard to hear"......

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.