1st Anniversary

What a year!!!!

A year ago at this I was out of surgery and had a new heart beating so strong it was rocking my body!

So, what all has taken place in the past year that I believe would be seen as a miracle.

*Ro and his family

*Kira and Sergio arrive in the states

*Derek gets home from his mission the same week I  get my new heart

*May 13, 2010 I get the awaited phone call "They have a heart for me"

*May 14, 2011 Transplant of a new heart is a success.

*Feeling a Love for a complete stranger and their family.

*My understanding of Miracles.

*Feeling the prayers from so many people and faiths

*10 days after transplant I am able to leave the hospital

*Lene spending mother's day with me in Utah

* Miss Celes arrives, Our first grand baby

*We find out that another grand baby will be coming in February.

*Having energy to do anything...so we checked out as much as we wanted to in Utah.

*Well enough for an apartment.

*Lene and family spend the whole summer, they didn't have to leave after a week!!!

*Going HOME!

*I truly fall in love again.

*Green Cards

*I get to enjoy Holidays, and remember them!

* Miss H joins our family

and the miracles continue to be a part of our life's.

To my blogging friends THANK YOU

for all of your words of encouragement, your prayers and your friendship.

I have had an amazing year and you have all been a very big part of it.

Now to start on year 2....

What Do I Say?

In just 3 days it will be my one year anniversary with this new,

little, amazing heart.

I was told that I can write a "gratitude" letter to my donors family.

They will get to choose if they respond or if I get to know more about my donor besides the basics ie:

 male or female, age, where they were from, ect.

I have been thinking about this for a year and now that it is here~ I do not know how to say what is in my heart.

I am crying just doing this blog.

How do I tell someone that maybe the worst day of their life was the most amazing day of mine.

How do I thank them.

How do I share my feelings?

How do I tell them the  things I have been able to experience because of their loved one?

I do not know where to start,

I know this will sound really strange, but I think my heart is missing them this week.

I have not had tears in about a year, but this week I have cried allot.

What do I  say to the people that are part of my hero's life?

What do I say?

Dear Donor Family,

I wish I could put my feelings and thoughts into words...

Do You Remember What You Were Doing THIS WEEK ...Last Year

I can not believe that it has been a year since I posted this ...

Broken Heart

WOW....

3 Generations of needing "Go Red"

Grandmother, Mother and Daughter

I did not know my mom's mother,  my grandmother, she passed away in 1948, my mom was only 6 years old.  

 Her name, Hazel Christine Freeman Berryhill she died of HEART FAILURE.              

 My mom , Geneva Mary Berryhill Angle  passed away in 1994...of HEART FAILURE.                                 

   I had my first heart attack in 2004

 and received my new amazing heart in May of 2010.

I hope with the knowledge that I,  Janiece A. Burgess have received from the AMERICAN HEART ASSOCIATION, 

and the Go Red  Program

I can be the last link of women in my family having heart attacks or disease

What women or men in your family have had a heart attack.

FYI...

a women's heart attack does not usually display the same symptoms that men do.

I never had chest pains, a numb arm or even color changes in my skin or lips....

almost 1 month later did we realize I had had a major heart attack.

WOMEN, See A Cardiologist BE SURE your heart is working the way you need it to.

I love you



Hard To Believe

My new heart is 8 months old!!

I have had my donor on my mind so much...

maybe because of the holidays.

I hope and pray that my donors family know how much I truly appreciate them...

they still hold a very special place in this amazing little heart.

I get to share my 8 month mark with my fun little nephew, Ham.

January 14, 2011 he is celebrating his 4th b-day!

He is my sister 'Lene's youngest.

Happy Birthday Ham!

I love you!

6 Months

I can not believe that today is

 my 6 month mark with my new heart.

How time flies!

 I will never have to words for my organ donors family to tell them

how much I appreciate

and truly love them.

In just 6 more months I will be able to write the family of my donor.

I hope then I will get to know more about the person who has saved my life

and will always be MY HERO.

Dr. Kforey & Team

One if the biggest lessons I have learned in the past few months is that My Cardiology Team really cares about me.



Dr. Kfoury

Dr. Kfoury is a straight forward doctor.

He does not have a problem telling me "No" and that can be a good thing.

Dr."Rami" and Dr. Budge are amazing in different ways.

This week as I went to my bi-weekly check-up Dr. Kfoury said that he wanted to do another ECHO just to see how my heart was doing.

My first thought was OH NO...I did not pack an over night bag...

After the ECHO, Dr. Kfoury came in and said that things looked really good.

My New Little Heart is beating like it did when I first got it.

YES!

How grateful I am for this amazing group of Drs. and Staff of the Heart Failure and Transplant at the Intermountain Medical Center in Murray.

REJECTION...

re·jec·tion (r-jkshn) n.
1. The act of rejecting or the state of being rejected.
2. Something rejected.
3. Medicine The failure of a recipient's body to accept a transplanted tissue or organ as the result of immunological incompatability; immunological resistance to foreign tissue.

This past week has been strange with a lot of different feelings.

The thoughts of my body not being kind to my new heart has really been emotional to me.

I knew and I still know that having a new organ can and WILL bring some types of rejection.

I have not had my head in a hole in the ground.

My rejection is not TERRIBLE....by any means. It was just a real reality check.

This his how they grade rejection levels:

Acute Organ Rejection - ISHLT Grades and Treatment
Grade
Patients Status
Early (less than 3 months)
Late (after 3 months)
0
Stable
No changes
Standard immunosuppression
1A
Stable
No changes
Standard immunosuppression
1B
Stable
No changes
Adjust drug doses
2
Stable
No changes
Adjust drug doses
2
Unstable, meaning:rising CVP and PCWP, decreasing EFarrhythmias and other symptoms
Increase drug dosespossibly add 100mg prednisone TID
Same as for early treatment
3A
Stable
Increase drug doses100mg prednisone TID
Same as for early treatment
3A
Unstable, meaning:rising CVP and PCWP, decreasing EFarrhythmias and other symptoms
one gram IV prednisoneIncrease drug doses
Same as for early treatment
3B
Stable
one gram IV prednisoneIncrease drug doses
100mg oral prednisone TID
3B
Unstable, meaning:rising CVP and PCWP, decreasing EFarrhythmias and other symptoms
ALG, ATG, or OKT3 for 7 to 10 days
one gram IV prednisone for 3 days
4
Irrelevant
ALG, ATG, or OKT3 for 7 to 10 days

My rejection numbers have been "0" and "1A"...

See not bad....

Even my labs and biopsy came back great...but my echo was not as good as it should be.

Am I grateful for amazing doctors who are so aware of something that was just a blurb on on echo.

So, tomorrow I am back to Utah for another Cath Lab, an Echo and Clinic.

Oh how I hope and pray I am back home tomorrow...

and just in case...I am packing an overnight bag.

September 14, 2010

In April of this year Mary RC made this cool tool button for me.

I still look at it and it makes me happy.Yesterday I was looking at different things on Cafe Press...If you have never been to their website you really need to check it out.

These are a few of the shirts I fell in love with.

Happy 4 months post my heart transplant and I am so happy.

3 Months Post

It is hard to believe that it has only been 3 months since I received my new heart.

and yet at other times it is feels like it has been forever.

I do not know what I would have done with out my brother Ro and his support during this time in my life. He and his wife, Karen and family opened their home to me for as long as it would be before I would receive a heart transplant.

Thank goodness, our Father in heaven knew it would need to be a short time.Before all of my family could arrive I went into cardiac arrest prior to the transplant.

Ro was the one that was able to calm me down and give me the encouragement to know I could and would be fine having this major surgery. He is who sent constant texts to our family out of state so they had updates on how the transplant was going.

And is the first person I really remember after the surgery was done.

love runs deep.

It has been a crazy post 3 months.

I am still living in Utah, but am in a nice little apartment. I have a new granddaughter, and found out Kira is going to have a baby the first part of 2011, Derek is home from his mission, Kirk still loves me even though we no longer have anything in our savings account and I am doing well, and getting along GREAT.

But, this question has been kind of bothering me...

We say that our heart is what makes us love, and feel certain ways, it controls who we are and things like that...

My son in law, Sergio and my daughter Kira are my "caregivers" so they are with me all the time, good thing too...some days my shakes are so bad that I know I would not be able to drive and my vision is still very blurry in one eye, that it gets frustrating to see things. But, they both have said they have seen some changes in me...

Not as happy and carefree as I was... More in my own world...

I hope it is because I am missing living at home...and it is hard to be carefree when someone...aka Drs. are telling you everything you CANNOT do.

And maybe I am more in my own world right now...

I am afraid of hurting people. It is a real fear that I am dealing with. I know I will work through it, but it is taking sometime.

I love my new heart, it is so good to me. It has given me an amazing chance to have a long life.

1 Month~ with my new amazing heart

It is hard to believe that a month has passed since I got my new amazing heart...what a good month it has been.

Guess What I Did!

The Dr. asked if I would like to go home for the weekend...

HECK YEA!!!

We got to see the most beautiful sun setFriday was Yamamy's Wedding and Reception

WHAT A BEAUTIFUL BRIDE

inside and outI totally loved her cake...

Sunday after church we came back to Utah....

Monday Cath lab, biopy, echo, and appointment at the heart failure and transplant clinic...Dr. K was not happy that I had gone home...thank goodness Dr. B is who said I could last week...Dr. K said he was not letting me go home for 2 months...I don't think he is joking...

Pills Smills...

I once thought that the 12 pills a day was a bunch!

Now I take over 20 different pills multiple times a day.

and the doctors are wondering why I still do not have an appetite! How grateful I am for anti rejection meds...and med for all the side effects of the anti rejection stuff, steroids, antibiotics and blah blah blah

Free At Last

10 days after receiving my new little heart I was released from the hospital!

I had my first of MANY biopsies to check for signs of rejection.

Which to my dismay we already had some. The doctors told me several times this would happen...But...I was not ready to hear it on the first biopsy.

When the doctors came in they continued to promise me that could go home...home back to Ro and Karen's ...YES!!!!

It only took me a moment to get dressed....heheeheheee

I was not giving them time to change their minds.

Kira and Sergio who have been my constant companions, loaded my stuff and me into the car...and off we went...

LIFE IS SO VERY VERY GOOD!

Bless Her Heart

Hi there!

This is Janiece’s sister Lene and I wanted to update everyone on what is going on with her.

Last Thursday  her pager went off…yep that “PAGER”. After making a few hundred phone calls she headed for the hospital. And Kirk and gang headed down from Idaho.

Here she is waiting to go into surgery.

She ended up waiting much longer than she expect and finally on Friday afternoon she went into surgery. The good thing about the delay it gave everyone plenty of time to get there…and wait.

Here she is with her sweet family, except for Ali who wasn’t able to make the trip down.

The surgery went really well. And the O.R. staff was great. They really kept everyone who was waiting at the hospital informed about what was going on each step of the way.

Here she is on Sunday with our brother Rowland. He and family have been amazing to her while she has been down in Utah.

And Kirk sent me these pictures today. Not only walking, but walking with a big smile.

Doesn’t she look AMAZING!!!

I have talked to her a couple times and she sounds great.

Love ya Niece and keep getting strong!

SPT Thanks 'Lene!

My Sister 'Lene

follows Lelly's SPT's

her post today made me cry and feel very grateful that she is my little sister.

Thanks "Lene...I love you with ALL of my heart!

April is National Donate Life Month

30 Days to Help Save a Life: What to Do in April
National Donate
Life Month was established in 2003. Every day in April, people across the U.S.
make a special effort to celebrate the tremendous generosity of those who have
saved lives by becoming organ, tissue, marrow, and blood donors and to encourage
more Americans to follow their fine example.

Make it known: I want to be a donor
Register with your State Donor Registry, if available.
Say YES to donation on your driver's license.
Tell your family, friends, physician, and faith leader that you want to be a donor.
Fill out and sign a donor card, have it witnessed, carry it with you.
Tell someone: The need is great and growing.
More than 98,000 people are in need of an organ for transplant.
Each day, about 77 people get the organ transplant that gives them a second chance, but 17 to 19 others die because they did not receive an organ transplant.

Feeling...

It is O.K. if I have days that I feel like this...Right?

Long Time No See...

WOW...I go home for a week and I totally forget to BLOG...

So, here is a brief outline....

I came home with this cute little bag...that I have kindly named "Shadow" and quickly pinned a "GO RED" dress on him.These are "Shadows" gutts and why I get to be out of the hospital...the neat heart med is on a continual flow PICC line.

Shadow and my dear friend, Kayleen ie: chauffeur ...lunch buddy and partner in crime and all round good friend, ran TONS of errands and laughed...and cried together...

BUT ...Shadow has a new friend hanging out with him...

Yep,

I HAVE MY TRANSPLANT PAGER!!!!!

I KNOW CAN YOU BELIEVE IT!!!!!!

rules did come with "the pager"...

I have had to leave my home because Burley is outside the 2 hour radius of the transplant hospital...

I now live in... Utah.

at my brother, Ro and his families home.(this is before the yard was put in ) I am good...

I am happy...

and I am grateful...

Broken Heart

Whew... where do I start?
If you follow my blog, you know that I have heart problems.

I had an appointment at the Heart Failure/Transplant office that I have been going to for the past 5 years.
Last week when I was at the doctors office...I must have had my rose colored glasses on when they told me they needed to see me again in a week for an appointment for the
"Cath" lab for the pressure of my heart to be check.
I knew my energy levels were low...but maybe I was just being lazy :o)
When they finished the "right cath. procedure they took me up to my hospital room, to start me on heparin and get ready to thin my blood to therapeutic.
When about 3 hours passed in walked my cardiologist and his "team".
He is a straight forward doctor I like that.
He said, Janiece, it is time to put you on the heart transplant list.
You are a perfect candidate and it needs to be done.

In the past two weeks they have ran all the tests that they need to to present me to the "transplant board" on Tuesday.

The support of Kirk, our children and family has been beyond words.
I have been so blessed.

I am going through emotional swings...I will be fine ... and then have a few tears.
The thought that someone will loose their loved one for me to continue to have mine is so difficult.
One of the transplant doctors made this comment "now their heart will not go to waste."
My thought was, True...
and I promise that I will not let it go to waste either.


Are we ready for another adventure?