Scars

Over the past couple of weeks, I've been looking at t-shirts for a team of friends and family who will be walking (in honor of me) in the American Heart Association Heart Walk, on October 29.  While looking, I discovered some very interesting websites, and one of my favorites is rockscarlove.com.  The site has some really cute t-shirts related to scars and transplants, and as I began reading some of the post on this site, it got me to thinking about my own scars; The Heart related ones.

My very first scar is right in the crease of my leg, most would call this the groin area, but I hate that phrase, so I refer to it as the crease where the leg bends.  I had my first heart catheterization procedure done in January of 2011, which left a small circular scar, and can easily be hid by a bathing suit in the summer.  My second scar is on my neck.... now, the procedure for this scar hurts like a.... well you get the idea, and it is by far the worst, AND it is my least favorite.  It's called a Swan right heart cath, and to put it mildly, IT SUCKS and did I mention it HURTS!!  I've had 3 of those darn Swans, so that accounts for scars two, three and four.  It looks like a Vampire has had hold of my neck, but I promise I'm a were wolf kinda girl.  My fifth scar is from a defibrillator implant that is located just below my left collarbone.  It's only about 3 1/2 inches long, however the device sticks out, and looks like a miniature  alien spaceship landed beneath my skin.   I won't EVEN tell you what my friends called this scar as it was healing.  My sixth, seventh, and eighth scars are in my right arm from a pic line of Milrinone.  These also look like a Vampire has had hold of me, so I guess I'm a Vampire girl after all.   My ninth and most significant scar runs slightly to the right of my sternum and is about 10 inches in length.  This scar is due to surgery to implant the devise that keeps me alive, my LVAD.   (thank you modern technology)  And lastly, just below that zipper scar, is four 1/2 inch scars where all the drain tubes were after my surgery. (I still don't have feeling in that area yet).
As I look in the mirror each day, I am reminded of what those scars represent.  They represent a Fighter, a Mom, a Wife, a Friend, and a Daughter that refused to give up hope and let a sickness rob me of my young life.  Some of us like to show our scars and share the stories that go along with them.  Others want to hide them and never be reminded or relive those scarred moments again.  I am personally proud of my scars, where they have led me, and I wear them with honor and pride.

This is the T-shirt we will be wearing for the walk, and I have also added one of my favorites websites,
RockScarLove.com.

Rock Scar Love

Amazing Grace

When I discovered I had heart failure in early January of this year, I was absolutely stunned.  I could NOT believe something like this could happen to someone like me.  I have participated in a marathon, done countless 10K and 5K races, and I've been athletic ALL MY LIFE!  How was this possible?

During this journey, I have learned several things.  One is, I am absolutely surrounded by so many people who are forgiving and who love me unconditionally.

I have had an abundant outpour of friends and family that have given their money, time, thoughts and prayers, and an amount of support that has been breathtaking.  Simply saying Thank You doesn't seem to be enough,  for all I've received.  However, please know that when I do say Thank You, I truly mean it from every ounce of my body.  

I have also always believed that everything in life happens for a reason.  And, after I got over the initial shock of what was happening to me, I began to believe that all of this was given to me, for me to share, with everyone I meet, God's Amazing Grace.  You see my friends, I was in such a dark place last year, and I had fallen so far away from Christ; lost connection with our amazing Lord, and his Amazing Grace.  What I have realized, even in MY darkest hours, is that our God, my God, forgives me, loves me unconditionally, and only gives me what I can endure, with his guidance and grace.  I often sang a song at our church "Grace Flows Down", and today this song has a very different meaning.  

Enjoy! (I don't know what the video is, but I just love the song)  

Grace Flows Down

The Feeling of Guilt

This blog is a tough one.  I'm sharing a lot of information about my life, that I wouldn't normally share with anyone..but this blog is about me and it comes from my heart!

The week of September 17 - 23, Kasen was out of school for fall break.  After much debate, we decided  a week at the beach was long overdue for our family.  We had the opportunity to visit Myrtle Beach, South Carolina and stay in a house with my Uncle, Aunt, and my Parents.  The weather wasn't great; it was cloudy and rained most of the time, but we did have two partial sunny days on the beach.  We stayed busy everyday, with some sort of activities for the boys.  Darren took them crabbing, and they caught a couple of good size crab.  We were hoping for a great blue crab "free dinner", but only caught 2 (that we could keep).   Kasen, however, could NOT keep his crab to eat, and Kuper WANTED to keep his, but only as a pet.  NO pet crabs wanted or needed in my house!

Everyday was wonderful while we were away, however, I couldn't help but feel this overwhelming feeling of guilt.  I felt guilty for a lot of things on the trip, but the thing that bothered me the most, was actually taking the trip. How could our family justify taking a vacation when we have medical bills out the wazoo, and we're sending out letters asking close friends and family to make donations for an upcoming fundraiser??  The truth is.... we can't!  (But let me try) :)
Most of you don't know this, but last year, Darren and I were going through some really difficult things.    I had given up on our marriage, and even began seeking a divorce.  Timing... however, and God's plans were NOT in sync with mine.  My plan was to stay in our house, (for the boys), through the holidays until the first of the new year, and then get my own place and move out.  I had started a new job and was on MY new path.  The holidays came and went, and January arrived.  I started the process, and BOOM... I got sick.  Instantly, the feeling of guilt came over me, and yet, Darren never left my side.  The sick feeling of guilt hasn't left yet, and probably never will find a way out of my mind, to a home of it's own.  Darren and I started marriage counseling and we are working (together) to build a stronger relationship...  One that involves communication and A LOT of dedication.

We desperately needed a vacation this fall.  One where we could enjoy each others company, and spend quality time with our boys.  One where we could appreciate each other and spend time with family.  One where the feeling of guilt couldn't overpower us.  Regardless, if we took this vacation or not, we would still have medical bills out the wazoo, and would still be struggling financially to survive.  So we decided that our beach vacation was well deserved and much needed.  After everything we have been through as a family, we could justify one week at the beach.  We were not spending any money that was coming into the NFT funds, and the feeling of guilt ... well, let's just say I feel better this week.  :)

It's Part of My Life

As most of you know, everyday life for a person living with a LVAD is anything but normal.  And if you know anything about me, you know that living with this has required a tremendous amount of patience on my part.  There have been so many things about my life that have changed, to name a few... I am required to take medication both in the morning and at night.  A dressing change, for the drive line is mandatory at least once a day, and taking a "quick shower" no longer exists.

Every night I lay down on my bed so Darren (or my Mom) can change my bandage.  Most of the time, the two of us just make small talk while the changing occurs.  However, there are times when I glance down at the site and begin to cry.  I feel this overwhelming feeling of self pity and embarrassment.  This line... a line that is connected to a pump, attached to my heart, that keeps me alive; it's part of my life.  I should be grateful for this line....right?  Yes, absolutely I should be grateful, and I am, with the exception of this past week.  For some reason, the past week has been really hard for me, harder than usual.  I cried a lot more, and just felt really sappy.   I thought my drive line had become infected, so we've been changing the bandage twice a day, and the pain that comes along with this is, a constant reminder of that "line" being a part of my life.

Yesterday I visited my LVAD coordinators down at Emory.  I prayed a lot going into this appointment, because the last thing I could ever need or want is an infection!  I was reminded yesterday that I have many things to be thankful for.  First of all, I am thankful that I have a wonderful Mother-in-law that was able to go to the doctors appointment with me. We had an awesome lunch afterwards and we had a chance to catch up on many things.  Secondly, I am grateful for such wonderful friends that are concerned and worried about me.... 24/7.  I am grateful for my boys having such huge hearts and worrying so much about their mommy.  Kasen has taken care of me for the past 3 days and has really helped out.  Kuper is just the free spirited little boy he should be with sooooo much energy.
But the most important thing that I am so grateful for is life!  Thank you God for letting me live everyday with people surrounding me with their love.  Thank you for my doctors and surgeons, and all the wonderful nurses that have cared for me since January.  Thank you Darren for standing strong for the two of us when I was too weak to stand on my own.  Thank you Mom for teaching me how to be the best mom I can be and never leaving my side.  Thank you Thoratec for modern medicine and for a pump that is a Part of My Life!!

P.S.  NO Infection!! :)

Birthday Blessings

With each passing birthday, I can't help but notice how many people get discouraged with another digit added on that signifies how many years they've been on this earth.   I was one of those people, thinking I didn't want to "grow old".   I loathed the fact of getting older, and most of the time would do everything in my power to try and avoid it, to"stay young"....I will forever be 29!  It wasn't until January that my perception started to change a bit.

When I was diagnosed with Congestive Heart Failure, I was immediately put through a series of test to find out how much fluid was on board, and what my heart was pumping out (That's called an ejection fraction, or EF).  One of the first doctors assigned to my case was a young man, probably not much older than I, with an amazingly HORRIBLE attitude.  He was with a group of Doctors, but for the most part I only met with him.  He began testing immediately and after several blood tests and chest x-rays, many EKG's, and  Echocardiograms, I was told I had an EF of only 10%.  (Normal is 50 - 70%).  He told me the chances of getting my EF above 12% would be nearly impossible.  The "Dr" also told me that if I had any type of surgery where I was put under, that I would never wake up.  The very next day I had the Head Cardiologist at Kennesaw take me to surgery, put me under, and did an angiogram.
At that very moment I thought I would die.

This year, my birthday wasn't about birthday wishes, but about all the many Birthday Blessings.... and I have so many to be thankful for!  Yesterday, I turned 38 and I embraced the day with a very different attitude.  I am so grateful to be alive!  I am blessed to have a wonderful husband who loves me, and has been by my side through so much!  I am so appreciative of my Mother and Mother-in-law, who have given me so much love and support, and to my friends, who have shown me that I will always have a shoulder to lean on, I am Blessed!  Blessed beyond belief...

I look forward to celebrating many more birthdays, and celebrating life everyday.  I want to grow old with Darren and watch our boys grow up.  I want to experience our kids falling in love and getting married.  I want grandchildren and great grand children.  I want to tell my story over Thanksgiving dinner with a table full of family!

Although I still don't want to look or act old, I will cherish each and every birthday I get the pleasure of celebrating.  May God Bless you, and grant you many Birthday Blessings.

I Was Shocked!!

For the past 3 days, Darren has been out of town, and I have been home alone with both of the boys.  Kasen has started back to school, and Kuper will not begin GA Pre-K until the end of August.  My days have been relatively quite, with no unexpected things blowing up, or breaking... Well, the air conditioner stopped working up stairs, but luckily I have a neighbor who is HVAC certified, so he came to the rescue.  The nights have been a little more stressful, because Kuper is going through a phase of "being scared".  He doesn't want to sleep by himself, so he gets in the bed with Kasen.  Well that's where things begin to drive me crazy.  This turns into a 2-3 hour ordeal every night with both of them fighting and arguing!!!  Last night was probably the worst of the nights.  I was at my limit with them, and decided I needed some girl time with my neighbor Lisa.  After our girl pow wow, and Darren finally getting home, I began to calm down a bit.  Around 11 p.m., Lisa went home and Darren and I went to bed.  It was a very restless night. I was up several times, tossing and turning, and finally felt I got to sleep around 4 or 5 this morning.  Darren was a superstar this morning, getting Kasen up and ready for the bus, and allowing me to sleep in. At some point Kuper had come into the bed with me, and sometime around 8:00 this morning I woke up to a bolt of electricity running through my body!  Oh my goodness....I was shocked!

One really can't imagine how many things can go through your mind in one single second.  The first thought I had was about my child.  I looked at him thinking I had killed him; he didn't move, and was sleeping so peacefully.  At that very moment, that was good for me.  "Well, the defibrillator works," was my second thought, and lastly I thought "I am thankful to be alive".   I made a phone call to Kris, my VAD Coordinator, and told her what happened.  She said to go have a full panel blood work-up done, so they could check my potassium and magnesium levels.   Along with my INR, everything was perfect!  I received a phone call late this afternoon letting me know that my heart was beating over 300 beats per minute, and this had happened several times.  Each time the defibrillator/pacemaker would pace my heart back into rhythm, but this particular time, I was shocked.
In the last couple of weeks, I have felt so good.  So good that I have tried to forget about my weak heart, all the medication I must take daily, or the fact I have a tube coming out of my abdomen.  I've started more and more activities, trying to believe that I am "normal" again.  This morning was just a reminder that I'm not "normal"...  A reminder that I have heart failure, and less than 3 months ago, I had a major surgery implanting a pump to my weakened heart.  
I was supposed to go to the clinic on August 19 for a full round of tests, however, they have changed my appointment to tomorrow.  I will have an EKG, an ultrasound, and several more test run, along with my antibodies checked.  These test will tell me if I might be able to go back on the transplant list.
With that said, here I am again on my knees, and asking for your prayers.
God reminds us everyday that while we are here, it's not what we have planned for our own lives, but what he has planned for us.
Many Blessings to you!

The window is open!

It is with great sadness to be writing this...

Early this morning, Brandon Butcher lost his long battle with heart disease.  As I said before, all of us "LVADer's" on Face Book have become very close, and we are all like family.  We support each other, and we all know what each one has gone through.  When one family receives a heart, all of our hearts are full of joy, when someone is in pain, we all hurt, because we've probably been there before, and when someone loses their battle, it puts everything back into perspective and we all stick together in prayer!!  Brandon was probably one of, if not the youngest person in our group with an LVAD.  He was married to Kari, a warrior, who cared for him in an amazing way, never leaving his side, and kept us all posted on his progress.  Not once did Kari ask why this was happening to her, or her family?  Not once was she negative, or had a negative thing to say.  She reached out and asked for prayers and support.  As one LVADer said, "When Prayers go up, Blessings come down", and that is exactly what happened.  Kari has been blessed with two beautiful boys and loving friends and family (near and far) that will smother her with support and love!!  God never leads us to an experience without helping us through it. Just remember we must be the one to ask for His guidance.   I am attaching her beautiful story she sent this morning.  Please say a prayer for her, and for the family.  Kari needs all the love and support she can get.  

I am VERY sorry to tell everyone this, but Brandon lost his battle this morning. He is right where he belongs and has no pain. He went comfortably and he knew. He asked his mom to open the window. And when he was going, I told him "Brandon, the window is open, fly away home". And he did, I saw it with my own eyes, his eyes went straight to the window... I'm so much more at peace knowing that God is taking care of him now. Thank you to each and every one of you for all of the prayers, and advice, and well wishes. I will never be able to say that enough.. And I will always be an LVAD WARRIOR! ~ Kari

May God Bless you Kari, and your Family, and may Brandon finally rest in peace.

Prayers for my Brothers

I need your help!!  PRAYERS......

When I had surgery in May, I never imagined getting to meet some of God's most amazing miracles.  I have had the pleasure of becoming part of a wonderful group on Face Book called the LVAD Friends.  There are about 50 of us and we are growing strong.  We all ask questions, talk about everyday life, and most importantly, we all pray for each other!

There are two people I would like all of you to say prayers for.  Chris Lockhart and Brandon Butcher.  Both of them are in critical condition, and need God's healing hand!

Brandon has an LVAD and is in the hospital.  Unfortunately the right side of his heart is suffering and his liver is failing.  The Dr's have told him, "IF he goes home, he will have several very INTENSE months".  There is much more to his story, but these are the latest things, and he needs OUR prayers.

I met Chris when he was in the hospital in June.  He is 38, and has suffered from Heart Failure for 10 years.  With much hesitation, he had an LVAD put in about 3 weeks ago, and had a follow-up this week.  They kept him in the hospital because apparently his pump has been "striking".  They are running test, but may have to replace the pump.... That means he will have to go through a second open heart surgery.  I CAN NOT imagine what that pain must feel like.  The first one is horrible, I certainly wouldn't want to have a second one...3 weeks later!!

Please lift Chris and Brandon up in your prayers!!!  I will keep you posted on them as soon I as hear something.

May God Bless you, and Thank you!

Routine Dr.'s Visit

Last Monday I had a visit to the LVAD Clinic, and it was a great visit.  My left lung was clear of all the fluid, (thank God) which has resulted in breathing much better.  :)  When we first found out I was going to have this LVAD, we knew I was going to need 24/7 supervision for 3 months.  I have been blessed to have my Mother staying with us Monday - Friday.  She never hesitated when the question was asked who would be able to do it, she has cooked, cleaned, and done our laundry for months.  My two questions during last weeks visit, were "When can I take a shower", and "Do I still need to have care/supervision"?  I received a super cool shower bag, and was told I no longer needed 24 hour care.  While I was ecstatic about taking a shower, I couldn't imagine not having my mom here with me.  She's always been my best friend, and to have her live with us was such a blessing.  I know the boys probably made her tick, along with trying to keep the house clean and organized, monitoring me, and never finishing laundry....  We never had dirty clothes.  :)  Yesterday was my first full day without Mom and with Kuper watching Little Bill over and over.  I do miss my Mom, because it's not quite the same without her here, however, I am extremely thrilled she is now back with my Dad. Health wise, he is not doing so great either, so having her back makes me feel much more comfortable.

I will visit the coumadin clinic this week to have my INR checked, and I don't go back to the LVAD clinic until August 19.  The next visit to the LVAD clinic will be my 3 month check up, and this visit will be a very important one.  I will have a series of test done to determine if my heart is healing, which will include an Echo to see if the ejection fraction has increased.  I am asking for prayers for healing.  I know God has been with me each step in this journey, and whatever the outcome, there is a lesson.  My lesson throughout this journey has been patience.  I have learned that my plans are not necessarily what God has planned for me, so whatever he has in store for me, I will be faithful to him and take what he gives me.
Take care and may God Bless You

Angels of Life Fundraiser for Georgia Transplant Foundation

Last night I went to the Cobb Energy Center for a fundraiser for the Georgia Transplant Foundation.  Lisa, Cindi, and Sue all joined me, and we got to see some really good ideas for my fundraiser.  We got to see Dr. Vega, my surgeon, Dr. Andy Smith, one of my cardiologist, and visited with many of Pamela's friends.  It was nice to get all dressed up, go out with my girlfriends and donate to a great cause.  (Although my feet hurt from standing in heels most of the night!!)

The most beautiful thing a person can give is life.  If you are not an organ donor, please consider signing up today.  Please visit  www.donatelifegeorgia.org to become to a donor.

Fundraising

Last Friday night I had the opportunity to have some of my dearest friends over to discuss some fundraising ideas.  John and Cindi came from Grayson GA, Kerrin and Beth came from Roswell, and my bestest girls from my neighborhood, Amy and Lisa walked over.  We were honored to have Pamela Locke here to give us some information on NFT (National Foundation for Transplants).  Pamela has had 2 kidney transplants and is such an inspiration and a miracle. We are hopefully going to do a fundraiser the end of September, we just have to nail down a place and the exact date.

I talked to NFT today and they are sending me some paper work to fill out, and I will have the great pleasure to become a patient with them.  I have contacted a financial coordinator from Emory and I'm waiting to hear back from someone.  I'm looking forward to getting together with everyone again to go over everything we are supposed to do.

Will keep you posted on a date and location!!

Some Good News

Well finally I've received some good news.  I got a phone call 2 weeks ago from Ann with the LVAD team with results from the x-ray.  Dr. Vega doesn't think we need to drain the left lung, and I will not see him again until July 25!!  I'm only going to the coumadin clinic once a week now, so hopefully that will get all worked out for once a month visits.  So far, the last two times, I've been within my range which have been 2.0 and 1.8.   YAY!!

Last week was a really good week for me.  It was my 8th week, and I started feeling like my old self again.  I was sure I was going to feel better by week 5, because some of the other LVAD recipients talked about how great they felt around week 5.  I was really starting to get frustrated, and when that happens, I go to the "feel sorry for me" place.  I luckily didn't stay in that place long, and started to feel better by week 7. Now I feel amazing and feel like my old self again.

Thanks for all your thoughts and prayers!! I will try to update this more often, so thanks for all your patients!!  I hope everyone had a wonderful 4th.

A Day at the Zoo

 Today is Friday, and I had my follow-up with the LVAD team, along with a chest X-ray, and blood work.  When I met with the team, Kevin hooked me up to the power source and started looking and recording numbers from my pump.  He discovered on June 19, my pump flow had decreased from 4.5 to 2.2.  Normally in a situation like that, the pump would alarm very loudly, and then we would contact the team.  However, my pump did not alarm, and that is certainly a scary thought and feeling.  Kevin swapped out my controller, so everything should be okay now. 

As far as my blood work, I was high on my INR (coumadin level) and low on my potassium.  This past week I've felt several of the PVC's (irregular heart beats and/or palpitations), which I found out was due to the low potassium levels.  Some minor adjustments to my medications, and it should be better in a couple of days.

I have not heard anything today from Dr. Vega about my chest x-ray, however I did have the opportunity to look at the x-ray and saw that my left lung is still retaining fluid.  (I was unable to get the x-rays to post).   Hopefully Monday I will have good news.

After my clinic visit today, I walked over to the hospital to visit with Mr. Walden.  Mr. Walden is a LVAD patient who received his pump 3 weeks before me.  He is such a sweet heart, and he's grown near and dear to my heart.  I first saw him in the ICC unit when I was transferred to Emory.  He was in his bed, weighing only around 95 pounds and barely alive.  I honestly didn't think he would ever make it out of the ICC.  Now he's doing great, walking everywhere, gaining weight and feeling so much better.
I also got to visit a young man today diagnosed with cardiomyopathy, and heart failure.  He is scheduled for the LVAD surgery soon, and had lots of questions.  I talked with him for about 30 minutes and just tried to encourage him and answer any questions he could come up with.  It's nice to know that other people out there are sharing the same types of fears and have similar questions.

After all that.... I had the greatest afternoon date with my nieces and my boys at Zoo Atlanta.  The weather wasn't too bad, and the crowd was light.  Kasen and Kuper had a wonderful time, even though we have season passes and they've gone several times, and I think Kaylee and Kennedy had fun (except for the smell).

I hope everyone has a wonderful weekend, and I will post again as soon as I find out more info from the Dr. about the fluid.  Thanks again for all the many thoughts, prayers, and well wishes.

Monica

Is the Lung Half Empty or Half Full?

Just a quick note to say Hi, and thank you for all the many thoughts, prayers, well wishes, and messages.  It will be 6 weeks tomorrow since surgery, and I am feeling better and stronger everyday.  My drive line is still trying to heal up, and causes me the most pain on a daily basis. Because we have to change the bandage daily, the area around the line gets wet, then we have to bandage it back up, which causes it to stick to the drive line area.  So....when that happens, it feels like someone is burning my skin, YIKES!!  (So there, I'm done complaining now).

I have the wonderful pleasure of my mom staying with me 24/7, and since all this has happened, we have been extremely blessed to have her.  She is an amazing person, that words can not even begin to describe.  Last night I had the opportunity to sit with Mom and Darren quietly and listen to funny stories of me in the hospital while on Morphine.  Now, while I was in the ICU, we discovered after about the 3rd day, that I was allergic to Morphine, due to cat like claw marks from my waist down to my toes.  In the ICU, we found out they wouldn't allow cats, so we chalked it up to ME clawing myself, which in turn made for several uncomfortable days.  (Just a few more funny statements from me on morphine and I'll get  to the lung thing, I promise).  While in the I CU, on the most evil drug morphine, I told Darren I had won the lottery, I was reading books, and eating lots of food.  I told my Mom we needed to go to a huge party, and we were going to be late, I turned imaginary pages of my imaginary books I was reading in my sleep, and I kept searching for her to feed me, all while sleeping.  I would wake up and tell them I was just pretending.  HA!!  They really thought I was funny, but didn't laugh at me until last night.  (Thank you Darren and Mom).  

Now to the lung thing.... I have a Dr's appointment tomorrow for a follow-up, where they have scheduled another chest x-ray.  I am praying, and needing all of your prayers, that the fluid in my left lung is no longer half full. Unfortunately, if there is still fluid, I will probably be admitted into the hospital, where they will insert either a chest tube or extremely long needle into my back through my lung to drain it.  Now at this point in my life, I am really over enduring pain, and from what I've been told, it's going to be painful. (If anyone know differently, PLEASE let me know). I will be able to give more information on my lung tomorrow.  Just wanted to let everyone know I need a few more prayers to ease some pain.  Thanks again to all of you for your support and many prayers.  I really couldn't do this as easily without you.  God Bless all of you, and I'll talk to you soon.  

Monica

June 16, 2011

Finally I'm getting around to updating my post...a week late.  Oops. :)
Last Friday, June 10, I met with the LVAD team, and the surgeon to discuss the fluid still in my left lung.  When I left the hospital, the fluid was filling only half of my lung.  When I had my follow-up a week later, my left lung was completely full of fluid.  Dr. Vega was very concerned about that, and scheduled me to come in the following week to have another x-ray, and the fluid was back down to half.  I have another appointment on Friday, June 24 with an x-ray to see if the fluid is gone.  (I am hoping to get the pictures of the x-rays to post) Please pray there is no more fluid, or Dr. Vega will need to drain it.  ( I really don't want that to happen).  Tomorrow will be 5 weeks since my operation, and sometimes I feel like things are going much better, and Im healing great, and other days, I just want to sit on the couch all day and do nothing.  The site where the drive line comes out of my belly is still healing, so I would have to say it is the one thing that is causing me the most pain.  Unfortunately I am still having to take pain meds, but I'm only taking them once a day, sometimes twice.
My coumadin (blood thinner medication) levels are still low, which means my blood is too thick.  I have been avoiding green foods for 2 weeks, hoping to get my INR level to 1.8 - 2.2.  It certainly has been a challenge.  I have tried a very small glass of red wine because it is a blood thinner, and there were no changes.  (Darn) :)  We will continue to try different things and increase my dose if needed.  I will go in the morning to have more blood drawn to check the levels.  I will say... I normally have to go twice a week to give blood, and it's not fun, and I think I've been poked so many times I have scar tissue around my veins that used to work so easily.
Thanks again for all you followers, supporters, and prayer worriers. I feel like I can't say "Thank You" enough and describe how grateful we are, to have so many people that have donated, prayed, among the many other things by our generous friends and family.  We Love you people so much, and really are blown away at the support that has been given.  Much love to you all!!!!

Monica

"Brighton" my day!

I have a new angel bag that I carry all my wings and controller in.  Take a look and let me know what you think.  

June 3, 2011 Update

Yesterday I had my first follow-up appointment with the LVAD clinic.  It has been 3 weeks today since my surgery, and everyday I feel better and the pain is starting to subside.  Yesterday at the clinic, we answered lots of questions, and changed the drive line dressing.  The site looks really good and is beginning to heal.  I still have some fluid in my left lung they are concerned about and a very sharp, uncomfortable pain on the left side.  I was planning on dropping my pain meds, but they suggested waiting a little while longer.  Next week, I'm hoping to find out if my heart has decreased in size, because it's still enlarged to 7 cm.  (normal is about 5cm)  I'm just asking for continued prayers for my own heart to heal.  The doctors are hopeful that my heart will heal, and someday I will be able to have the LVAD removed.  It's a long shot, but with God, all things are possible!!!  

Everyday I'm getting stronger, and things are becoming more "normal".  Thank you.... to everyone for the overwhelming support and prayers.  I can not say it enough.  Thank you!!!  

May 31st 2011 update

Well it has been several days since Monica has been home, so I thought I would post an update.
The healing process is very slow, and Monica still has a lot of pain.  During the surgery she had a couple of ribs fracture, so that is where she is having most of the pain.  We did get out to the neighborhood pool a few times over the memorial weekend, and she was happy to get some sun.  Even though she is not able to get in the water, she did enjoy being able to sit on the edge of the pool and put her feet in.

Every night we have to clean the site where the drive line enters her body.  The process includes sterilizing a table in our room, getting all our cleaning supplies ready, and putting on masks and sterile glove.  Monica's mom is great at this, and has been doing an amazing job.  Saturday night was my first time doing this, and I will say it was a little nerve racking.  Know that I am responsible for doing a good job and preventing infection can be overwhelming.  I know it will get easier with time, but the first few times made me a little nervous.

Wednesday update

Monica is home!!!!!!!
12 days after major surgery the Doctors released her from the hospital this afternoon. She is still dealing with some pain, but excited to be home. They did an echo test before she left, and the size of her heart has gone from 8cm to 7.1cm! This is very good news that her heart has already seen improvement in this short amount of time.

Monday Update

Today was a pretty good day for Monica.  Still has pain, and some swelling, but we can see improvement everyday.  While I was there she took a long walk, and we made it to the dining hall next door.  Pretty sure the Chick-fil-a she had was better than the hospital food!  She also had her last two chest tubes removed, so now the only thing she is connected to is the LVAD.   The LVAD tech has been in every day to give us some training on the unit.  The pump can either run off of two batteries for about 12 hours, or a power unit
that she will plug into at night.  Pretty amazing technology.
Here are a couple photos from today.

Weekend update.

I took the boys down to see Monica yesterday. She was still in a lot of pain and just worn out. Kasen came into her room and was so excited to see her. Her walked around her bed and then saw her incision which stopped him in his tracks! He said, "mommy, I see your cut!". I think he got a little choked up seeing her like that, but both boys were very happy to see her.
Today she was feeling better than yesterday, and took a long walk down the hall. Still having a lot of pain, but feeling better overall.  I have been taking photos of Monica everyday since the surgery, and she told me that the one I took today, I should post it here.

Darren

Friday Update

Monica is still working through the pain.  While I was there, the PT had her walk all the way down the hall and back.  She told me her legs feel like jello, and her feet are so swollen that she could hardly get her shoes on.
The nurse was also showing us how to change the dressing on her "drive line"  The drive line is the small 1/4 inch round tube that come out just below her rib cage, and connects to her LVAD controller.  I have attached a picture below.  The dressing on this line has to be changed every day in a sterile environment.
We all had to wear masks and gloves.  Should be fun keeping the kids away while we do this at home.

Darren

Thursday update

Not much change today, although her pain might be a little worse.  They have her off of morphine,
and have cut back her percocet to one pill per dose, instead of two.  She has PT at 3pm today.
Hopefully the pain is better by Saturday, because I plan on bring the boy for a visit to see mommy.

We Miss You Mommy!

Darren

Wednesday update!

Big day, in that Monica was moved from the ICU today to a regular room.  She still have two chest tubes in, but most everything else has been removed.  Still in a lot of pain, and she has been itching all over.  Some of the itching is due to the morphine, and they are trying to cut back on that.  She rested pretty well last night, but the pain has been maybe been a little worse today.  They were starting physical therapy this afternoon, and are going to have her walk down the hall.  I guess they have a schedule to keep, but I can not imagine how painful that is.

Darren

Tuesday update

Monica had a pretty bad night last night, and could not sleep. Then someone thought is would be a good idea to give her a bath at 4am!  She seemed a little more comfortable this morning, but said she felt drugged, and was having some hallucinations.  I guess the Morphine is really starting to effect her.
My niece from Texas flew into town last night, and has been visiting Monica this morning.  I know that was a nice surprise for her, and hopefully will remember her visit.

I have attached a photo of some of the tubes and wires connected to her.

Monday update.

Monica slept 4 straight hours last night, so it is a good sign that the Drs can now manage the pain enough for her to sleep. She has a good amount of swelling in her feet. Her overall pain is still pretty bad, but maybe a little better than yesterday. Her blood level was pretty low yesterday, and we are waiting to hear if they need to give her some today. They had her up in a chair for 2 hours yesterday, and will try to get about three hours sitting up today.

Darren

Sunday

It is so hard to sit with the one you love, and see that person in so much pain.
The last two days have been long and painful for Monica. The Doctors are pleased with her progress, and her numbers are looking good. They just got her up an sitting in a chair for a few hours, and changed her dressings. Hopefully we can get the pain under control soon.

Darren

Saturday update

Monica had a long night last night, and was in a lot of pain.  Just saw her in the ICU, and she was having
a very hard time breathing through the ventilator.  She is writing us notes with her left hand, and just can't get comfortable.  The Drs say that her numbers look good, but can not totally knock her out, because they need to keep her a little awake so she can breath on her own.
UPDATE:  They just removed the ventilator and she is breathing on her own.  That was very  painful for her, but hopefully she can start to feel comfortable soon.
I have to take the boys to Kasen's scouts crossover awards campout this afternoon.  He has been looking forward to this for so long, but it is very bad timing.  I will try to give another update tomorrow.  Keep praying for her healing!

Darren

Surgery Day

Thursday night Monica did not sleep much at all.  At six AM Friday morning they came in to get her
to take her to pre-op.  The surgery started at 9:22, and finished at 1pm.  The Drs said everything went well, and it was the fastest LVAD surgery they have ever done.  Monica was taken to ICU, and will be on a ventilator until Saturday afternoon.

Getting ready for surgery

My LVAD surgery is tomorrow, and I was put on a study to try to receive a new LVAD that is not FDA approved yet.  It is a much smaller unit, but I just found out that I was not picked to receive that one.  I will get the Heartmate 2 which I am ok with, and I know it will work out great.  Here is a link that shows what the LVAD does. Click Here!

The time has come...

Well, after two visits to the hospital in the past two weeks, my family and I have finally decided to proceed with the open heart surgery to implant the LVAD. It has been quite a struggle, emotionally and physically for me and my entire family. When I was diagnosed with CHF (congestive heart failure) in January, I never imagined I would still be dealing with this 5 months later. I expected with some medication, rest, and a few Doctors visits, I'd be back to normal in no time. I found God's plan to be different than mine. After weeks and weeks of praying, meeting with surgeons, multiple visits back to the hospital, and many family discussions, we all agreed, there was no better time than now. My ejection fraction is still functioning (pumping) at 10%, and my heart is still extremely week; according to echocardiograms. I am going to spend Mothers Day with my wonderful boys and celebrate Kuper's 4th birthday this weekend. On Wednesday, May 11, I am checking into Emory for a few more test, and on Friday morning, May 13, I will have a bionic, super mom heart attached to my weak, nonfunctioning heart. Please pray for a speedy recovery and for the doctors to find out exactly what went wrong with my heart originally.

Update

THIS IS A POST FROM MARCH!  JUST ADDING IT IN TODAY, SO DON'T GET CONFUSED THAT IT IS A CURRENT POSTING.


Thanks to EVERYONE who has sent love, and had us in your thoughts and prayers. We are blessed to have such wonderful friends and family!

I am still in the hospital, but hoping to go home tomorrow. I still have the pic line of Milrinone, and the heart medication Toprol, has been increased to 37.5 mg. I have 2 specialist coming today to talk to me about a left ventricular assist device, or LVAD (Same thing Dick Cheney has). I have not decided on this procedure yet, but it does sound positive. I also found out that because my of my antibodies, I am going to be very hard to find a match for a heart transplant. My Dr. said that I was certainly a challenging patient. :) (Me....challenging???) Well, I will update you more when I find out some further info. Once again, Thanks for all the thoughts and prayers. I GREATLY appreciate each and every one of them.

Love to all and God Bless!