A powerful journey from living with an artificial heart to a heart transplant....

Friday, December 31, 2010

HOME ON POST-OP DAY 8

I'M HOME!!!!!!!!

Ah, it's so great to be home. I get to sleep with my hubby and get some peace and quiet. The nurses were great on the 7th floor but it's a very busy floor. I am already fully capable of going to the bathroom on my own, showering, climbing stairs, sleeping on my side. This recovery is nothing compared to recovery from the LVAD. I was in the hospital for three weeks following the LVAD surgery and when I got home I still couldn't do most things. I think the worst part of this recovery is that I have to tell myself to sit down and relax! I know, don't push it. I find myself wandering aimlessly just so I can move around.

I would like to send a sincere thank you to all of my readers. All your comments have lifted my spirits and helped the recovery time pass a little quicker.

It's hard to believe that I just had a heart transplant. It's all uphill from here!

I'm sure some of you are wondering about the Global segment. For those that don't know, Global 16x9 was in the OR during my surgery and will be doing a follow-up story soon. I haven't been told when it will air but I will share the date when I find out. We will be doing another interview at some point this month and they should know the air date at that time.

Tuesday, December 28, 2010

1st Biopsy and an Echo....

Well from what I hear, Ms. Andrea has been doing well! I did get to chat with her a little bit yesterday through texts which was really exciting! Her positive attitude never ceases to amaze me.

My brother and I keep in touch through texts when we can and he has told me that she is trying to do more and is really hoping to be home by the weekend! Amazing isn't it?!

So tomorrow at 9am Andrea will be having her first heart biopsy. I realize that many people might read this and just have no idea/understanding of what this really is. So I figured I would just give a little info on what it is and how it is done so you know! Biopsies are done to check for rejection of the donor heart.

First, what is organ rejection?

Normally, the body's immune system protects the body from infection. This occurs when cells of the immune system move around the body, checking for anything that looks foreign or different from the body's own cells.

Rejection occurs when the body's immune cells recognize the transplanted heart as different from the rest of the body and attempts to destroy it. If left alone, the immune system would damage the cells of a new heart and eventually destroy it.

To prevent rejection, patients receive several drugs called immunosuppressants. These drugs suppress the immune system so that the new heart is not damaged. Because rejection can occur anytime after a transplant, immunosuppressive drugs are given to patients for the rest of their lives.

To avoid rejection, heart transplant recipients must strictly adhere to their immunosuppressant drug regimen. Researchers are continually working on safer, more effective and well-tolerated immunosuppressant drugs. However, too much immunosuppression can lead to serious infections. Without an active enough immune system, a patient can easily develop severe infections. For this reason, medications are also prescribed to fight infections.

How is a biopsy done?

Doctor will take small pieces (samples) of the transplanted heart to inspect under a microscope. This procedure involves advancing a thin tube called a catheter through a vein to the heart. At the end of the catheter is a bioptome, a tiny instrument used to snip off a piece of tissue. If the biopsy shows damaged cells, the dose and kind of immunosuppressive drug may be changed. Biopsies of the heart muscle are usually performed weekly for the first three to six weeks after surgery, then every three months for the first year, and then yearly thereafter.

What if biopsy shows rejection?

If the biopsy indicates rejection is present (there are different grades), doctors will immediately treat it by changing the medication regimen. This may require intravenous or additional oral medications. It may be beneficial to be admitted to the hospital. Remember that rejection can recur at any time, and rejection is treatable if caught early enough.

Andrea will also be having an echo (ultrasound of the heart) tomorrow.....I can't wait to hear about how her echo looks now!!!!

I know she will do well tomorrow with both tests :) 


Monday, December 27, 2010

Bump-bump, Bump-bump, Bump-bump

It's beating very strong! I can feel it loud and clear! ...could be all the drugs....

Shannon - Thanks so much for all your updates. (Please continue since this is difficult with one hand...)

Shaun - It doesn't get much harder. I thank you for your strength and love. You should not have to carry your young wife to the bathroom. I treasure every moment my heart beats with you. I love you always.

Mom and Dad - Thanks for staying with us and helping care for your high-mainenance daughter! Even though encouragement is challenging right now, I need your help. Lots of love!

The docs came in to see me today and all is good. They want me to take my pain meds, I don't like how they make me feel but I will suck it up. They want me to use my breather thing (sparometer) 10 times per hour because it opens my lungs. And they want me up and moving. Check, check and check! They say there is a spectrum, the good, the bad and the ugly and I'm on the good side.

I've got a biopsy scheduled for Wednesday and maybe home this weekend! YAY!

Lots of love and hugs all around!

Sunday, December 26, 2010

A Little Note From Mom

Yes, it was an incredible day (Christmas). Andrea is Awesome! But I also want to thank Shannon for her Awesomeness! She has been much more than a sister-in-law to Andrea. She has been support, an ear when Andrea needed it, a shoulder to cry on, a ride, a hug, great deserts, fantastic crafts and scrapbooking, our techy person for letting loved ones know what's happening on this blog and on facebook, and a total sweetheart for our Andrea in the time of her biggest needs. Of course, we all know Shaun has been amazing too, but that's for another time! Shannon- thanks from Dave and I for your huge heart and love for Andrea!!!



To Dave and Carol from Shannon:

Your absolutely welcome!!!!!!! Your daughter is an amazing woman. I am proud and honored to call her my sister in law. But what I love more is the friendship that we share. I consider Andrea my best friend! It has only been through the past couple of years that this friendship has truly grown, but either way I am glad for what it is today! I love her with all of my heart. I would do ANYTHING for her and I know that she would say the same thing. I am thrilled beyond words that she has received this gift of life!!!!!! You have raised an AWESOME woman, so thank YOU!!!!!!!

Saturday, December 25, 2010

Merry Christmas!

I hope that everyone had a very good Christmas today! I know that I did! I got to spend the morning with my boys, baked a pumpkin pie and a lemon poppyseed loaf. We then packed up and headed down to Toronto to be with Andrea, Shaun, my parents, my sister and Andrea's mom and dad.

How is Andrea?

Well to start, she was moved out of the ICU and into step down! This happened yesterday later on in the afternoon. Hard to believe that less than 72 hours after receiving a new heart, she was already being moved out of the ICU eh?

She is without any IVs and the line that was in her neck is also gone!

She is still having issues with her right arm/hand and her legs being "tingly". Neurology did see her two days ago and she was sent down yesterday afternoon to have an MRI done. No word yet on if they saw anything or any idea on what exactly is going on with her. Again, we just hope that it is either to do with the medications she was on, the way she way laying for so long or even just a pinched nerve.

She is also very very tired, but I am sure that anyone would be given what she just went through! Pain is also an issue, but again, who the heck wouldn't be in pain after what she just went through?! She said to me tonight after I told her she looked good that "the doctors keep telling me I am doing well, but I don't feel very well." BUT being only 96 hours out, again, expected.

I did some work on the keepsake book that I wanted to give to her today and although I didn't "finish" it, I did take it with us today to give to her. I felt that today being Christmas was a good time to do so :) I had taken it in with me initially when I first got there and went in to see her, but every time I even thought of giving it to her, I would feel the tears coming. So I ended up walking out of her room with it still in my arms. However, after we all ate dinner and she was on her way out I gave it to her then. And I am proud to say that I did very well! Yep, Ms Emotional didn't break down! And by the way, you can still send a message for Andrea as this will be a work in progress for a while, I am sure!

I felt really special tonight because I got a text from Andrea telling me that it was her second text since her new heart and that I got her crying. Its kind of a joke between us, because she is always making fun of me and how emotional I am. My tears always fall easy! I felt so special because I was also her FIRST text :)

Here are some pictures from our MOST AMAZING Christmas!!! It still doesn't feel real at times that Andrea has her brand new heart! I found myself sitting there a couple times tonight just looking at her and thinking just how freaking incredible it is that the heart in her chest beating came from someone, somewhere that we do not know. I know I have already said this, but MAN, I can't even tell you how amazing it is!!!!




"Just follow your heart and you'll never get lost"




Funny how some things turn out too. I had bought the above plaque for Andrea about six weeks ago. Perfect? I say so. 

I know that this Christmas is probably a horrible time for the family and friends of the donor who gave the gift of life to Andrea. I can't even imagine the sorrow that they are feeling and then being so close to a holiday....I am sure it is just THAT much worse. I often wonder if they are curious about the heart and where it went. If they know just how much it means to us. If they realize that they have done the most amazing, incredible thing that could EVER be done. So many questions. I hope that they have some peace and comfort in knowing that other people have been given a second chance. My thoughts and prayers are with the donor family every day now, and especially tonight.

xxxooo

Thursday, December 23, 2010

Two Days Later

Well I travelled down to Toronto to see my amazing sister in law today and she looked INCREDIBLE!!! She was sitting up in a chair and had the most amazing colour to her face that I have seen in a long time. You can even see her rosy cheeks in the picture! :) It is hard to believe that this girl just had a brand new heart placed in her chest less than 48 hours prior!!!!!




And of course my smiling little man in the waiting room....he isn't able to go in to see his Aunty A while she is in the ICU.


She is having some pain in her right arm and hand but the doctors figure it is from either the way she was positioned for the long hours (during surgery), or perhaps one of her many many needles hit a nerve. As well both legs don't have much feeling and are "tingly" so they are keeping an eye. Neurology was in tonight to see her but no word on their thoughts or the tests they want to run.

I wasn't able to spend a lot of time with her today as she had already been sitting for quite a while and she needed to rest before physio was to come at 3pm. I am proud to say that she did do SOME walking later on this afternoon!!! She amazes me every minute that I think of her. And I am just SO SO SO proud to call her my sister!

The doctors are just amazed at how well she is doing and so are all of us!!!!!!!!!!!!

One other thing....I am asking people to leave a little "note" on their thoughts/feelings/good wishes for Andrea. I am going to make up a little book for her and I am hoping to give that to her on Christmas Day. I think she would LOVE to see how many people are thinking of her. Well I don't think, I know. Aren't I just one kick ass sister in law?! hahaha

So keep those prayers a coming...they have definitely worked thus far!

Wednesday, December 22, 2010

The Day After...

"Hi. I'm Andrea's Mom. It is the day after, and her heart is beating beautifully. Her blood pressure is perfect, her oxygen is perfect, her heart rate is perfect!! Yes, a rough road for a few days, but doctors are VERY pleased with her progress, and we are SO thankful for their work and expertise. I want to say a very special thank you to the donor's family and loved ones for the generous gift of life. I often cry for that family, and I feel their grief, but their choice to give Andrea a chance to live a full life is appreciated, aplauded, and hopefully will give them some comfort in their loss! Bless you!! I wish we could meet in the future, but for now I send out a huge hug to you all! Thank you! Thank you!! "

Shannon:  Andrea as you can see is doing well today! I heard from my brother that they are hoping to have her sit up on her own later on this afternoon!!! Incredible isn't it?

This is a picture I took last night when we were able to go in to see her. It was just so incredible to stand at her side watching her chest rise and fall and know that it was a new heart doing this! And then to watch the monitor knowing it is all the works of such a wonderful donor. Words cannot even describe how it felt.


I also wanted to post the next picture. On our way home last night I stopped to grab the mail. In it was a Christmas card from Shaun and Andrea. They are handmade of course but the card gave me chills when I opened it. It couldn't be more true could it?


Those who know me, know that I am the BIGGEST believer in things happening for a reason. I know that sometimes things that happen are horrible and so forth, but I still believe. And I think that sometimes we might not "understand" why things happen that do but I believe that ONE day we will know why. We will learn to understand.

I will leave you with a quote that an online friend said, quoted by Catbert: "It only looks like a coincidence."

Tuesday, December 21, 2010

No Subject


Saw sleeping beauty. So unreal to look at her and know that there is a brand NEW heart beating in her chest! Much love and many prayers for the donor, their family & friends for such an awesome gift! A PERFECT Christmas gift for us all! Keep those prayers coming!


You've received a Message from a TELUS phone.

For more information on TELUS Mobility's Picture or Video Messaging, visit telusmobility.com/snap.

If you don't hear or see the file, download the Quick Time player.

  Vous avez reçu un Message d'un téléphone TELUS.

Pour obtenir plus d'information sur la messagerie photo ou vidéo de TELUS, allez à telusmobilite.com/clic.

Si vous ne voyez ni n'entendez le fichier, veuillez télécharger QuickTime.

No Subject


All is done! Doctor said surgery went better than he even expected!! Just waiting now to go in to see her :) Thanks for everyones prayers today....please continue to pray as she recovers!


You've received a Message from a TELUS phone.

For more information on TELUS Mobility's Picture or Video Messaging, visit telusmobility.com/snap.

If you don't hear or see the file, download the Quick Time player.

  Vous avez reçu un Message d'un téléphone TELUS.

Pour obtenir plus d'information sur la messagerie photo ou vidéo de TELUS, allez à telusmobilite.com/clic.

Si vous ne voyez ni n'entendez le fichier, veuillez télécharger QuickTime.

No Subject


The new heart is in and beating!!!


You've received a Message from a TELUS phone.

For more information on TELUS Mobility's Picture or Video Messaging, visit telusmobility.com/snap.

If you don't hear or see the file, download the Quick Time player.

  Vous avez reçu un Message d'un téléphone TELUS.

Pour obtenir plus d'information sur la messagerie photo ou vidéo de TELUS, allez à telusmobilite.com/clic.

Si vous ne voyez ni n'entendez le fichier, veuillez télécharger QuickTime.

No Subject


New heart is being sewn in right now!!


You've received a Message from a TELUS phone.

For more information on TELUS Mobility's Picture or Video Messaging, visit telusmobility.com/snap.

If you don't hear or see the file, download the Quick Time player.

  Vous avez reçu un Message d'un téléphone TELUS.

Pour obtenir plus d'information sur la messagerie photo ou vidéo de TELUS, allez à telusmobilite.com/clic.

Si vous ne voyez ni n'entendez le fichier, veuillez télécharger QuickTime.

No Subject


Andrea is being hooked up to heart/lung bypass right now. Heart estimated time of arrival 4pm.


You've received a Message from a TELUS phone.

For more information on TELUS Mobility's Picture or Video Messaging, visit telusmobility.com/snap.

If you don't hear or see the file, download the Quick Time player.

  Vous avez reçu un Message d'un téléphone TELUS.

Pour obtenir plus d'information sur la messagerie photo ou vidéo de TELUS, allez à telusmobilite.com/clic.

Si vous ne voyez ni n'entendez le fichier, veuillez télécharger QuickTime.

No Subject


Surgery started about 30 minutes ago.....heart should arrive around 4:30pm. We are headed to Toronto now. Keep up those prayers!


You've received a Message from a TELUS phone.

For more information on TELUS Mobility's Picture or Video Messaging, visit telusmobility.com/snap.

If you don't hear or see the file, download the Quick Time player.

  Vous avez reçu un Message d'un téléphone TELUS.

Pour obtenir plus d'information sur la messagerie photo ou vidéo de TELUS, allez à telusmobilite.com/clic.

Si vous ne voyez ni n'entendez le fichier, veuillez télécharger QuickTime.

OMG I AM FREAKING!!!!!!!!!!!!!!!! ITS A GOOOOOOOOOOOOOOOO!!!!! WOOHOO!!!!!!! Please pray for Andrea as she gets her NEW HEART today and for the family of the donor!!!!!!!!! ♥



Two dads waiting :) They look good in pink eh? LOL

All prepped....stilling waiting and hoping that this is her PERFECT heart!!!!!!!!!!!


"Thank everyone for your prayers and thoughts. I am waiting for a no or go right now. I have my family and an awesome medical team! Love to all!" ~Andrea Clegg

Still waiting....

Well Andrea is all prepped and ready to go...but still waiting on final word to know if this is THE HEART!!! Global is there now doing some filming....what an amazing story to follow eh? My beautiful sister!! :)

Global

Global has been told that Andrea is in the hospital being prepped so they are working on getting a camera to the hospital as they will be IN the OR during her transplant!!!

Still no word that this is FOR SURE a go, but we all just keep praying that this will be the Christmas miracle that she deserves!!!

They Are Waiting....

While we keep praying!!!!!! Fingers crossed that this heart will be HERS!!!!!!!!!!

WE LOVE YOU GUYS!!!!!!!!

Second Time A Charm???

Well everyone, Andrea is on her way to TORONTO!!!!!!!!!!!!!!!! It is 4am and I just received a call from my brother about ten minutes ago that there was a call for a "possible" heart transplant. We of course will not know until a couple of hours from now but lets PRAY that this IS the PERFECT heart that she has been waiting for!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!