Saturday, December 31, 2011

Rose Bowl Parade Float

This past week my friend Claire and I had the opportunity to help decorate the Donate Life Rose Bowl parade float. The Rose Bowl Parade this year is actually on January 2, 2012.

Going into this I had no idea what to expect.

The Rose Bowl Parade was something I always watched. Never really understood how those floats got decorated or how much work really went into each individual float. Well, now I know. My day was filled with climbing scaffolding, glueing lettuce seed, standing in very small spaces, glueing hot bottled oasis on silver petal leaves, glueing crushed lentils to the side of this giant parade float, and on top of all that....the people.


Everyone that volunteered shared a common ground, organ donation. In one way or another all the volunteers were either a donor family, a transplant recipient, living donor, spouse or partner of a recipient, nurse, doctor, and those waiting for their transplant. The ones that touched my heart  & took my breath away with their generosity were the donor families. This was the part I never expected. I never expected to be face to face with a family member that made the decision to donate their loved ones organs. One in particular was a father whose 16 yr old daughter was tragically killed.  He donated her organs to save other lives. In hearing his story, how his face lit up when he talked about his daughter... I looked at him with water filling up in my eyes and thanked him for his decision to donate life. And by doing so, his daughter's spirit will not only live on through him but it will live on through all the lives saved.  Most of you know that our donor family still remains a mystery to us. I can tell you that when I looked at this father,  and when I thanked him, and reassured him how wonderful of a person he was by re-gifting life........in an odd way I actually felt closer to our donor family. 

The theme of this year's Donate Life parade float is "....One more day." How very appropriate, don't you think? Most people waiting for a new heart, lungs, liver, or kidneys unfortunately don't get one more day. Presently there are more than 100,000 men, women, and children awaiting organ transplants. Thousands more are in need of tissue and cornea transplants to restore their mobility and sight. 

Being an organ donor does save lives. My husband is living proof. My little family of four IS a story of hope.

Rock on. Donate Life. Provide HOPE for those that just want "one more day." Register to be an organ donor today: http://donatelife.net/                                                                                                   






Thursday, December 8, 2011

Somewhere over the rainbow...

Everyone knows the song, right? I remember as a kid getting all excited every time The Wizard of Oz was on TV...I couldn't wait to hear Judy Garland sing it.... I knew and still know every word. To this day every time I hear the song it brings me back to that childhood excitement, to the days when I would lay in the grass looking up just dreaming about anything and everything. Even as an adult I still dream...whether it's gazing up at the stars or looking out at the ocean...

This past weekend Kevin and I went to the annual Cedars Sinai Heart & Lung Transplant holiday party. "A Celebration of Life." There must've been at least 250 + people there... heart & lung transplant recipients, their family members, nurses, doctors, their family members. It was so wonderful to see the nurses & doctors in regular people clothes. No green or blue scrubs. No white coats.
Berni (NP), Rho (VAD team), Kev,
 & Mel (VAD team)

The evening started and we were at a table with other heart transplant recipients. One was transplanted the day after Kevin. They were both newbies. The other three heart recipients at our table were five years, nine years, and ten years post transplant. It's amazing. An instant bond with transplant recipients just like those with a VAD.

Me, Charito (VAD team), Kev
Dr. Kobashigawa was at the podium giving thanks to all the teams of doctors & nurses in the room. Talking about advance technology, the total artificial heart, the VAD program, how Cedars has done 75+ heart transplants this year alone (surpassing last year), stem cell research, and in between all of this he would introduce people. One of the men he introduced came up to the stage and had a flute in his hand. Bonus in my book because who doesn't love live musicians?  He was a double lung transplant recipient, two years post. His opening song on the flute was "Somewhere over the rainbow." Instantly the song had new meaning for me.  It was nothing short of amazing.

Another man that was called to the stage was Dr. Czer. We knew him from our LVAD days. We still see him post transplant on the days he's in clinic. He asked for a moment of silence for all of our donor families. This brought tears to several people's eyes. So many people in such a difficult time... made the generous decision to donate life to each & every one of those heart & lung transplant recipients in that room. Quite a powerful moment indeed.

Dr. Esmailian & Kevin
Dr. Esmailian was also called up to the stage. He began to thank his entire team of doctors, nurses, the OR staff, perfusionists, and he also thanked his wife & kids. I'm sure he must get woken up a lot in the middle of the night and his wife gets woken up too. Behind every good doctor is their spouse or partner, agreed? Now, where do I begin with him? He has given me both good & bad news throughout this past year. Every turning point in this journey, Dr. Esmailian was there. He was also one of the many doctors at Cedars Sinai that never gave up hope on Kevin. Not once. He saved Kevin's life on more than one occasion. What are the odds? Esmailian to one. (thanks for the catch phrase Reid) Before we left that night Kevin & I got the chance to have a conversation with Dr. Esmailian and his wife. It really was nice to see him smiling at us. I thanked his wife for sparing her husband last year during Kevin's critical condition those first two weeks. I was at the hospital all hours of the day and night...Dr. Esmailian was always there. He is an absolutely wonderful doctor/surgeon who clearly cares about his patients and the families attached to them. I am forever grateful to him for keeping Kevin alive and getting us to the point of bridge to transplant.
Me, Kev, & Dr. Cheng (aka rock star)

At the end of the evening, we got to mingle and say hello to other doctors and nurses. One pictured to the right is with Dr. Cheng. In our house, he's a rock star. He's the doctor that found Kevin's pheochromocytoma tumor. The cause of Kevin's heart failure. By finding the tumor when he did, he literally saved Kevin from another heart transplant. Had it gone undetected then we most likely would've been back. So you can see why we refer to him as a rock star.


Dr. Moriguchi & Kev
I saved the best doctor/patient picture for last. It's one of Kevin & Dr. Moriguchi. This doctor, like Dr. Esmailian, was also there all the time never giving up hope. He too gave me both good & bad news throughout this journey. We still get to see him post transplant for routine biopsies when he's in clinic. I am forever grateful to him as well...one of the few doctors that saw us from day one until present.

You know, a year ago we were living with an LVAD. Today, thanks to modern medicine, the 45+ people at Cedars Sinai Medical Center that saved Kevin's life,  and our donor family....well, my little family of four gets to "wake up where the clouds are far behind us" and "where troubles melt like lemon drops" because the dream that we dared to dream of Kevin getting a second chance at life....... it really did come true.

My little family of four. 

Wednesday, November 23, 2011

Giving thanks....

Embrace life.

This time of year everyone remembers all that they are grateful for...their friends, their family, their health, their job, food on the table, well...you know where I'm going with this. Giving thanks, being thankful, showing gratitude. 

Living post transplant for sure has given my little family of four a different perspective on life. Our little guys have said numerous times that they're thankful for "daddy's new heart." Ya know last year at this time they were thankful "to have daddy home with us." Amazing how much can happen in one year. 

Celebrate life.

In the fall of 1982 the movie E.T. was released in theaters. It was also fall of 1982 that my dear grandmother passed. The only grandmother I  knew because the other had passed years before I was even a twinkle in my parents eyes. I always remember her during my days here  and there... she's also one of the people that I would talk to during this past year. Her ears must be killing her. You're reading this hopefully not thinking I've lost my mind. When this entire journey started I had what I now refer to as my "band of dead relatives" that I would talk to. I'd beg them to please turn off whatever light was on so Kevin would turn around, walk back and wake up. Begged them to get off of whatever cloud they were floating on and  to go watch over Kevin every time he was in the OR. You all know how our story ends ... he did wake up and they looked over him during every surgery.  I'm so completely thankful for them.

Live each day to its fullest. Tomorrow is never a guarantee. Be thankful for what you have.

In no particular order, I'd like to share what I'm thankful for this year:

Our boys, aka my little monkeys.
Kevin. His love. His beating heart. The fighter & lover I know. 
Our families.
Our SoCal family.
The air that I breathe.
Coffee. 
The roof over my head that no longer leaks.
Smiles. Hugs.
ichat.
My job.
A little family on Facebook called LVAD Friends.
Steel Magnolias.
The doctors & nurses at Cedars Sinai Medical Center.
LAFD engine 72.
Everyone that works behind the scenes at Cedars Sinai Medical Center.
My band of dead relatives, SMART.
"Our horses that vomit blood."
Unexpected telephone calls that brighten my day.
Our friends, both near & far.
MU.
A healthy family.
My parents & Kevin's parents. Thankful that our boys get to know them the way we know them.
The teachers & Director of our boys preschool.

Thanksgiving. Thankful that as this holiday is approaching I'm finding me again. The me that enjoys cooking. Everything on our table this year will be like years past, made from scratch and made with love.

Our donor family. Whoever you are, wherever you are. Thank you for giving my husband a second chance at life. I am forever grateful. 

In closing I would just like to say....I'm thankful for every morning that my little family of four wakes up under the same roof.

"Learn from yesterday. Live for today. Hope for tomorrow."

Thursday, November 17, 2011

letting go & finding me

"You have come across mountains this last year and all of you have survived.....scarred (mentally & physically) but you all survived."

Since the news that Kevin's pheochromocytoma was benign...we've been enjoying every moment and every day like normal families do. It's almost as if we've picked up from where we left off a little over a year ago.
the family that ROCKS together
stays together!

With the exception of the impending surgery on Kevin's hand/arm, we are literally back to our usual shenanigans. If I work late he picks up the boys at preschool. We went pumpkin picking and got lost in a local corn maze, pure fun. Trick or treating was extra special this year since Daddy was with us. The usual burping & farting contests with Daddy. Wrestling with Daddy again. Sharing the parent load is for sure back to both of us. Kevin can help with bathing the boys. We can have dinner without Daddy having to get up to take medication. We can go out on date nights without a hospital mask. Sending Kevin to the grocery store for milk is something I can rely on again. All wonderful news.....

So why in the hell do I feel lost? Did someone fire me and I'm still sitting at my desk like an idiot?

If I'm being honest then I have to admit that I think I'm having trouble remembering me. The life of a caregiver always takes a back seat. And if that caregiver has kids, well then that back seat is further back.

If you think about what has literally happened in a year's time....It can be compared to that of what most couples experience during their 60's, 70's or 80's, right? I did everything for him. I bathed him, helped him get dressed, helped him learn how to live with one hand really... we learned together that living with an LVAD was in fact do-able. Medication management, chauffeur, doctor appointments, fighting Mr. Insurance (still not ready to talk about it), therapy (both physical & occupational), took on the weight of his emotional distress whenever needed, always smiling saying that it would all eventually be behind us. Now let's add on top of that our twin 4 yr old boys. I'm a mother too. Wait, correction... that's working mother. I had zero time for me. Yes, I was fine with it. I don't regret anything because there isn't anything I wouldn't do for Kevin, my children, my family, and friends included. I made certain that the three most important men in my life had what they needed... did I go without in the process? At times yes. I was OK but I'm now finding it hard to find me again.

Let me try and explain a little better.

We are back to normal again. There are no more life threatening situations at our front door (knock on wood) anymore. The survival mode that kicked in from October 7, 2010 has now turned off. I'm physically here but it's like sitting in an audience waiting for the show to start. Where the fuck am I?  Again, did someone fire me? Is this what empty nesters go through when their kids go off to college?

I sort of have so much free time for "me" that I don't know what to do with myself sometimes.......now presents the issue I've been dealing with the past few weeks. Weird memory association. Flashbacks. I recently gave away all my clothes that smelled like the hospital. Things that family members used while they were here during the beginning...like pillows, blankets, sheets, etc... it's all in the trash. I've gone as far as avoiding some of my twin mama friends because I couldn't bear to see their faces because I was having a horrible flashback that morning. Even certain teachers at our sons preschool give me flashbacks. My brother came to visit in September...as I was dropping him at LAX I had a flashback of last year. Kevin's parents were just here...stayed with us for a few nights... same thing, bad memory association when I saw them. It happened practically every morning. Not their fault. Just bad timing maybe? I don't know. I need to let go and move forward. Blogging right now...typing it all out...crying in the process.... extremely cathartic.

the monks at the beach...
Is it possible I'm experiencing post traumatic stress syndrome almost a year later? Now that I have free time for my mind to wander I'm just now dealing with the actual emotion of what happened last year? This is the stuff the doctors don't tell you about. It's all very much about the patient because, well, let's be honest... he did die, come back to life, got new life, and technically he beat cancer...so the focus absolutely should be on the patient. If you're a caregiver and you're reading this.... please take time for yourself. No matter how little of a time it is... no matter what it is... take time to blink, breathe, and realize what is going on. Seek help if need be. Everyone warned me to take time for myself but I went with my heart. I put Kevin first. He is, after all, the love of my life. He inspires me like no other. He rocks my world. I wouldn't have it any other way.

me & kev lost in the corn maze
with the boys
So how am I nowadays? I'm OK. I think "me" is around the corner. My boys are still the force behind my strength. They remind me every day how lucky I am and they remind me to enjoy the simple things in life. Personally, I'm seeking my own kind of therapy. It's at the gym. Core & cardio training to be exact. It's two hours where I get "me" time to focus on and think about just ME. Call me selfish if you want but let's be honest, I've got a younger heart to keep up with. This ass is for you KEVIN!

Sunday, October 23, 2011

A Heartful of Love....

A week ago was our first fundraiser via HelpHopeLive (formerly NTAF). We had a virtual 5k walk where our friends and family walked at the exact same time, in honor of Kevin, in various places across the U.S. and on two continents. It was called "A Heartful of Love Walk." Everyone got people to sponsor their 5k walk, all the money raised goes directly to helping pay Kevin's medical bills post transplant. The final amount raised isn't in yet because HelpHopeLive is still receiving checks from those that walked.

This walk couldn't have come at a better time. A few days prior we had received the pathology report from the surgeon that removed Kevin's pheochromocytoma tumor. It's good news folks....... benign. We couldn't be happier and more grateful to hear the news. Sure, he's got to get checked every six months for the next ten years because these types of tumors are unpredictable...but, it was what we had hoped for. Our story of hope and love could continue on....


Now if I'm being honest it wasn't until halfway through my 5k to really take in the news that his tumor was benign. Sound odd to you? Let me try to explain. After Kevin was transplanted, it took a few hours for me to really take in what had happened...that after nine months his heart was beating on its own. I was laying down on the floor of the CSICU waiting room. My friend Linda had snapped the photo to the right of me. This time around though it took a few days for the good news  to sink in that it was almost over. (and by almost over I'm referring to his future left arm surgery being the end) It was almost the exact same feeling I had when I realized his heart was beating on its own. If I had to use only one word to describe that feeling it would have to be "calm."

Our 5k walk was in Balboa Park. The very same park where Kevin & I walked as a couple, as expectant parents, as new parents, and as a family. I chose this park for our 5k walk because of the meaning it has for us. I never thought the events of the past year would all come to one "calm" moment  during the walk. The photo to the left here was taken during my calm moment. It looks exactly as I felt at that moment. How coincidental that all of my twin mom friends who had walked every step of the way with me this past year were at my side during this moment. They were, they are, they will continue to be a staple in my life.

The actual day of the walk had meaning behind it as well. One year ago was when Kevin woke up after 11 days of not knowing. A magical moment I'll never forget. If you've been a follower of my mine, then you've read all about this moment...want to read it again? Here's the link to that blog entry: living with an lvad

In closing, I am reminded how fortunate my family is to be loved and surrounded by such wonderful people. How fortunate we are to have the support of our family and friends both near and far. How grateful we are to our donor family. How grateful I am to have Kevin, Kaeden & Quinton....and that with hope and love, anything is possible.

Wednesday, October 12, 2011

Relief

Yes, I'll be the first to admit that I am indeed burning the candle at both ends. I'm not swimming in a pool of wax so I'm not exactly worried just yet.  Everyone knows what Kevin has been through this past year and being his wife, his caregiver...well, I feel that I have walked every step with him. Like we are on this marathon and people on the sidelines keep putting their hands out with water yelling that the finish line is right around the corner!! I wouldn't have it any other way.  He is the love of my life. A year ago I was willing to give up everything just to hear his voice, just to see him open his eyes and wake up. 

Never underestimate the power of love. 

It's been a year of ups and downs....heart failure, LVAD, compartment syndrome, Mr. Insurance (not sure if I'll ever be ready to fully discuss that topic), getting listed, heart transplant, pheochromocytoma tumor, and now recovery. Don't forget we have twin four year old boys. It takes my breath away just typing it all. Can you imagine how Kevin feels? Can YOU?

One year. 365 days.

You know last week I was doing my best to avoid the whole anniversary of what happened when I blinked my eyes. The whole memory of what happened was just unavoidable for me. The memory is still too fresh I guess. Instead of sulking I decided to raise my glass (of scotch) three times. First was for all the doctors & nurses at Cedars Sinai. Second was to everyone that has supported us. Third was for Kevin. The weekend went on.... I finally got around to filling the planters on our front porch with actual plants. The "fall" decorations are out....the scarecrow, the bail of hay with 4 little scarecrows in it.

Life as a parent is unpredictable... you never know what you'll be wiping up or from what end at any given moment... same applies for sick children. It happens when you least expect it. Last thing I wanted to do this particular weekend was go to urgent care. In the end, breathing treatments, a couple of xrays, some stickers, and senseless toys....diagnosis: slight case of pneumonia.

Work has been quite busy these days for me. I welcome work. It's a wonderful distraction and honestly I love my job. Last week I was talking about Scotland, this week Paris, and next week Italy. Come on, my job is pretty freaking fantastic. No joke. Ask anyone that knows me, I really do enjoy my job. Nonetheless, it's been quite busy where I'd leave at 8am and be back home by 7pm. It's a long day.

Fundraising. We've got to pay for everything that Mr. Insurance won't, right? We've signed on with NTAF to help us raise money to pay for Kevin's medical expenses. A dear friend, Mary Ann, whom I've known for years, also I've adopted her as a second mother (in addition to my already Californian Jewish mother Paula), is heading up our fundraising campaign. Our first event is this Sunday October 16. It's a virtual walk. We have friends & family members on two continents that got people to sponsor them in a 5k walk in their own neighborhood or local park. Starts at 12noon east coast time/9am west coast time. Donations are tax deductible. NTAF oversees it all. (convenient link to Kevin's patient page with the NTAF on the top right of my blog)

As this week has moved on certain things have triggered memories for me. Songs on the radio. Pictures. Pieces of paper. Clothes that I haven't seen since a year ago. People mentioning to me that "they know it's been a year." The ongoing statement of "wow, you look good Tracy considering all you've been through."

So, I'll say it again... a year has passed.

Want to know what I think? I wonder if I've said "thank you" to everyone enough times. I hope everyone involved in our lives realizes how grateful we both are. I wonder if that emergency room doctor had a boy or a girl? Is that nice woman I met in the ICU a year ago doing ok...is her dad doing well post heart transplant? Will my kids remember the bad part of this past year?  Why do people park in handicap parking spaces when they're not handicap? Will the memory fade away? Who is our donor family? What circumstances did they undergo to have to make that decision or was he a registered organ donor already? How did I get home that first night?...for the life of me I can't remember. Tomorrow at clinic will they tell us benign?

Lead by example. My father had a heart attack when I was a teenager. A pretty serious one, quintuple bypass before 45. Want to know what I remember about that? My mother. I never once witnessed her letting her guard down, never once saw her stressed out, never once saw her fall apart. Everyone in the waiting room was a mess, including me. Not my mother. She was strong, a tough cookie my mom. If she did fall apart, I never saw it... she kept it cool when I was around. Maybe the apple doesn't fall from the tree after all?

Relief for me is spelled with a capital B-A-B-C-I. For those not fluent in the the Polish language, Babci means Grandmother. More importantly she's coming and will be here in less than 24 hours. Or as my boys said tonight "one more sleep until Babci." I cannot wait to see her and I cannot wait for my mother to take care of me.

Thursday, October 6, 2011

It's out!

The "it" in "it's out" is referring to the tennis ball size tumor that was removed from Kevin one week ago. 

His surgery was one week ago and four days later he was discharged. Amazing. The surgery was just as long as his heart transplant but seemed more nerve wrecking this time around. Thankfully the tumor being removed was the only thing removed. The outcome was what we hoped for, the best case scenario. Unfortunately the recovery is going to take slightly longer than expected. And now in addition to transplant clinic we also have to go to cancer clinic. But I've decided to dub cancer clinic as "the other clinic."

The pathology report isn't back. It's like I can see the finish line but just haven't crossed it yet. 

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.