Andrew and Amber's heart journey

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Andrew and Amber's heart journey Andrew needs a heart transplant and our oldest daughter Amber inherited his condition (gene mutation LMNA A/C) and is not to far behind in need one as well.

Yoshi our kitty got out of our house.  If you see him, please let me know.  He is very scared of people that are not his...
28/04/2024

Yoshi our kitty got out of our house. If you see him, please let me know. He is very scared of people that are not his humans. He was chased by a male cat in our neighborhood

18/01/2024

It has been 168 days since the heart transplant. 5 months and 15 days.❤️❤️
Our last few heart biopsies have shown very mild rejection. Nothing to be too concerned about, heart functions for a transplant are good.
Had a bit of adjustment of anti rejection medication, and unfortunately some side effects that are not so fun, but nothing can be done about them. Pretty bad shaking all over and nausea.
He completed his cardiac rehab PT. This helped him quite a bit. He can now walk a lot more, no more need for a wheelchair or walker when we go to doctor appointments. He has a bit more stamina which is fantastic! We are both happy no more drive 3x a week to Sugarhouse for this. Fantastic people and facility, but we are glad that part is done.

It takes about a year to really see all the benefits of the transplant. It’s a long road to recovery.

Update on Amber. Her heart function has improved a bit due to medication that is known to help with some people (Drew’s body did not tolerate it). Hopeful this will stall out the need for transplant for a long time!! She has been able to do a bit more again. Hopefully this continues for her and everyone can see her at the art shows with me again. ❤️

Update on Hailey. Her 4th hip surgery failed. She will be have her 5th surgery, a hip replacement April 4th. She has been referred to a specialist in her type of hip issues. They decided to do a more aggressive approach since everything keeps failing and her lack of mobility in her leg. Fingers crossed this gives her back some mobility without so much pain. She will have a bit of a journey before she is too side.

08/12/2023

129 days post heart transplant….
8 heart biopsy so far
Tons of doctor appointments and bloodwork.
2 mild rejections as per the transplant team nothing to worry about. Very normal, but they watch closely. There are a few heart issues, but in the transplant world, it’s normal. Lots of watching and addressing as needed.
Many,many medication adjustments
Cardia rehab PT 3x a week

Over all heart wise, Andrew is doing well. They are taking another look at the muscular dystrophy side. Due to this, he is slower at regaining strength and stamina and get exhausted easily. His recovery is going to be longer than others.

Happy Holidays!! Enjoy your precious time with your friends and family! I know we will be. ❤️❤️

08/10/2023

It’s been a bit since we updated everyone. First off Andrew is doing good. He is going to have a longer recovery regaining his strength and stamina. The muscular dystrophy (caused from the gene mutation) has effected him more then the doctors thought.
He has been doing home PT with a home health service. We have seen improvements enough that on the 17th he will start going to the University out patient therapy that is geared towards transplant recovery. From there the plan is to transfer him to a closer to home PT.

He has had a very mild rejection to the heart. However as scary as this sounds, it is to be expected. There are 3 levels of rejection, his is the lowest. We have been throughly prepared by the transplant team thus will happen and unfortunately happens here and there. At this time they will just continue to monitor him and his levels of medication to help with this. He is scheduled to for another biopsy this Thursday and that will tell us more.

Over the last few weeks he had some strange heart rates. It could be related to the mild rejection or it could be something more. They prefer a 30day heart monitor to see if they see anything of concern.

So far this has been a very good transplant with a few bumps in the road from what we have been told by the medical staff. To us, it’s been a crazy ride. ❤️❤️

07/09/2023

Bit of a late post…….He is home! Actually got home last Thursday!!🙂. It’s just been a bit crazy to post. Took us a bit to settle into a new rhythm and get some much need rest (still working on the rest part) we gave a few things more to get set up. Home health and Physical Therapy.
He is doing well as per transplant standards, zero signs of rejection so far. Huge sign of relief. Kidneys are still a worry and he is being followed very closely.
Medications are very harsh on his system and make it difficult to eat much. But he is working hard at get enough down. He has lost about 30lbs since June, over 20lbs since transplant.
It is wonderful to have him home again! ❤️❤️

Looks like he will be heading home on Thursday (81 days inpatient and 31 days since transplant) he has been in the acute...
29/08/2023

Looks like he will be heading home on Thursday (81 days inpatient and 31 days since transplant) he has been in the acute rehab center for almost 2 weeks, he has been working extremely hard to regain walking ability, standing for more then a few seconds and even stairs (39 steps today!), last week he could only go 4 steps. He is determined to go home. ❤️❤️
He will still need physical therapy, which we will continue to do in our home and later as out patient PT (maybe Hailey can join him 🙂)

It has been 20 days since transplant and 63 days in the hospital.   So far no sign of rejection.  The kidneys are starti...
20/08/2023

It has been 20 days since transplant and 63 days in the hospital. So far no sign of rejection. The kidneys are starting to function on their own and numbers are continuing to look good. They are going to increase the anti-rejection meds now. We had to wait for kidneys to come back around. Unfortunately foid has not agreed with him at all some due to medication and his kidneys. He is slowing trying to eat again. He has lost about 20lbs since entering the hospital.
He is has been moved again to inpatient rehab to work with him to regain his strength. It was very eye opening to him how weak he has become when they tested him. His muscular dystrophy has definitely played into this.
We are not sure how long he will be here. The transplant team is continuing their close contact with us. He is very well monitored here. A peace of mind for his family. ❤️

16 days in the ICU and he is finall being released to the main floor!!  What a crazy few weeks it has been. Kidneys have...
16/08/2023

16 days in the ICU and he is finall being released to the main floor!! What a crazy few weeks it has been.
Kidneys have not been very happy, but numbers are better after two rounds of dialysis. Hopefully that will continue to improve. We are very happy with his progress forward. ❤️❤️

14/08/2023

Andrew update:
14 days so far in the ICU. 64 days in the hospital. Hoping this week he will be transferred to the main floor. Fingers crossed!!!
He has had a rough couple days with nausea. Kidneys are not doing great, numbers are up and have been going up. Been in the fence of what to do for him, finally it was decided to start dialysis. He did one round yesterday and will be doing several more rounds. Hopefully this is just temporary.
Spoke with his night nurse. He already has slightly improved. He kept down some ensure.
He is up walking a bit. Much more smoother in his motion. We are very happy with this progress! Looks like they will be putting him in inpatient rehab after he is medically discharged (not for weeks or longer) due to the EDMD

As for Hailey
8 weeks she can do what they call tip toe on crutches. Not flat foot. It was really bad.
The 6 more weeks of crutches assistance for walking allowing her scar tissue to build up then they will do therapy to loosen it back up.
Labrum was torn again.
Shaved the bone back down
Sewed up the sac again.
He said she was extremely unstable in that hip. If this fails on her again, it’s hip replacement.
He is taking all precautions on it, extra time for healing. She will never have full range with the hip. But he is hoping this will get her out of pain and she can get back to life.
Let’s hope this works for her!

09/08/2023

8 days out from a heart transplant. It been a crazy time. He is still in the ICU. Not sure yet when he will go to the main floor.

Few little set backs, doctors reassure us this is not abnormal. Just not what they were hoping for. Every transplant is different. He is still having a difficult time breathing, hoping this will get better one the last drain tube is removed cross your fingers for tomorrow!) and more the fluid gets off. Which leads to his kidney issues. His kidneys are not filtering out the toxins well. If levels continues to rise then it will be dialysis. This also makes him have no desire to eat.

The heart is looking good. Biopsy should happen tomorrow. This will be happening quite often looking for rejection.
Leads that have been in pacing the heart are no longer in. Removed today.
Feeding tube is out (he is very happy on that)
Couple other drain tubes are gone 1 more to go!
He has been able to stand a little. Walking has not happened yet.

His mom is coming up this weekend stay for awhile to see Andrew. He is definitely looking forward to that. She is going to hang out with him while Hailey (our daughter) has her 4th hip surgery Monday. Cross your fingers this is it for her. If not, it will be full hip replacement.

We truly appreciate all the offers for meals. It really means a lot so many care!! Unfortunately with all our food restrictions and allergies that makes it very difficult. Gluten free and cardiac diet not the easiest combination, but we make it work. If you really would like to help, gas money is always appreciated.

05/08/2023

4 days out of surgery has been a bit rocky. We expected it. His oxygen levels are a bit low, using a bipap or a heavy flow oxygen to keep him from not needing to be ventilated again. Due to this, he cannot eat, so he has a feeding tube. His new heart is working well, medical stand point the doctors are very happy with this. Fingers crossed he continues to make good progress. There are lots of variables and we are just in the beginning.
Kidneys took a beating, but so far no dialysis has been needed. They are starting to function better now and fluid that built up is coming off slowly.
He has not been able to walk yet because if the oxygen issues but he was able to siting up in his bed for about 2 hours!

01/08/2023

Update on transplant. It went very well and took over about 7 hours. Surgery went extremely well.
He is in the ICU for a bit. No set time frame on this. Normals week or so. Then main floor for several more.
Thank you for all the wishes, vibes, thoughts and prays. They much appreciated.
I will update more later on for now I am going to sit and stare at him. 🙂

3am Sunday morning we got the call that they had another heart match for Andrew.  He accepted the offer. After 40 hours ...
01/08/2023

3am Sunday morning we got the call that they had another heart match for Andrew. He accepted the offer. After 40 hours of waiting and having the surgery time shift . We had the green light. Andrew start his next heart adventure at 7:30 today. One dry run for a transplant a few weeks ago, 50days in the hospital waiting, over a year and a half on the wait list and almost 4 years of testing trying to figure out what was wrong since he decided to be so “unique” he finally heading into the OR for transplant.
We have a long road, about a year ahead of us in this healing journey. But the first steps are starting!

I will not know much for hours. 4-6 is the normal surgery time.

We are forever grateful to the person who life has end but choose to give a last gift, life to another, potentially many lives tonight. ❤️
May their family and friends find some peace that their loved one still lives on. My heart breaks for them.

Day 45 waiting for the next call.   Hopefully soon and this time it will be a match!!  In the meantime his room has a be...
27/07/2023

Day 45 waiting for the next call. Hopefully soon and this time it will be a match!!
In the meantime his room has a beautiful view!!

Not much happening up here.  Still waiting for the heart transplant. ❤️❤️
15/07/2023

Not much happening up here. Still waiting for the heart transplant. ❤️❤️

09/07/2023

Update: unfortunately the heart was not in a good match for transplant. So he is back to waiting. Thank you for all the well wishes!! Hopefully the next one is it.

Update: unfortunately the heart was not in a good match for transplant.  So he is back to waiting.   Thank you for all t...
09/07/2023

Update: unfortunately the heart was not in a good match for transplant. So he is back to waiting. Thank you for all the well wishes!! Hopefully the next one is it.
Waiting for the prep to begin for transplant, expecting about 9am.
This is a very surreal experience. Very humbling knowing some who has died gave their very last gift to someone they will never know. We are very grateful to this person for being a donor, giving someone else another chance at life. We are heartbroken for the family who lost their loved one, may they find peace that their loved one gave a very precious gift.
We will be forever grateful❤️

Happy 4th of July!!3 full weeks at the hospital and still waiting.  He is doing really good, especially now that I am br...
04/07/2023

Happy 4th of July!!
3 full weeks at the hospital and still waiting. He is doing really good, especially now that I am bring him up food. 🙂. He has missed my cooking.
Kids are coming up for dinner and to watch the fireworks over the beautiful SLC valley view he has.

One week down….   He is doing good. Week one was a bit of an adjustment.  Having so many people in and out of his room h...
19/06/2023

One week down…. He is doing good. Week one was a bit of an adjustment. Having so many people in and out of his room has been hard adjustment. Everyone up here has been fantastic. He has a great care team. Fingers crossed we get the call of a match sooner then later!!

We are onto our next journey in this heart transplant world.  Yesterday, Andrew was admitted into to hospital until he h...
13/06/2023

We are onto our next journey in this heart transplant world. Yesterday, Andrew was admitted into to hospital until he has the transplant. We have been told to expect a long stay before it happens.
He has an amazing view of the city!

I will update as I know more.

This is a personal message from Andrew-Thank you to everyone who stopped by at the art festival to wish him luck. And thank you for the donations. This means a lot to me and my family that so many care.

08/06/2023

Today we received a call from the transplant team letting us know that it is time to have Andrew come stay at the hospital until transplant time. He will be admitted on Monday. It still could be a very long wait until he receives the transplant.
I will post more on Monday.

In the mean time, please help spread the word on our fundraiser.
Come see us at the art festival this week (Friday,Saturday and Sunday) I will have a donation box for anyone that would like to donate in person.

Just had his 7th right heart catheterization.  This guy is a champ!!!  He is showing signs of more declining and now con...
06/06/2023

Just had his 7th right heart catheterization. This guy is a champ!!!
He is showing signs of more declining and now concerns about his creatinine levels that have been steadily going up. If it continues it will cause them to fail which means he will need a kidney transplant too. We are walking a fine line on medication adjustments and issues they can cause other organs.

We are currently waiting on the transplant decision after the team discuses his care plan.
Fingers crossed we can move forward to the next steps that will get him closest (higher status on the wait list) to get a much need heart.

04/05/2023

We have not had much to update lately. Andrew is still at home, it’s just the waiting game of when he will be admitted. He has more testing June 6th. We are just enjoying the time he has at home with us.

Bit behind on posting.  Andrew hit one year waiting on the transplant list.  You have to go through all the test and app...
24/02/2023

Bit behind on posting. Andrew hit one year waiting on the transplant list. You have to go through all the test and appointments every year so it was a bit of an exhausting whirlwind of appointments.
With some changing of his medications he has been able to stay out of the hospital a bit longer.
His favorite thing to do… bloodwork. Not as many as the first round. This round was 22!!!!!
Hopefully this is the year he gets the new chance at life!

Update: he was able to come home.  They were able to adjust some medication and get his numbers back up.  Unfortunately,...
19/12/2022

Update: he was able to come home. They were able to adjust some medication and get his numbers back up. Unfortunately, we will be back and eventually have to have the heart pump, but for now we are home for the Holidays!!! Best gift ever!!

Today we are waiting for another right heart catheterization. This will hopefully tell us more information. He may come out of the procedure with a heart balloon pump. If so, he will be in in the hospital most likely to transplant. It could be a long hospital stay.

Looks like we are here for a few days at least.  We don’t know much yet, lots of wait and see if new medication works.
16/12/2022

Looks like we are here for a few days at least. We don’t know much yet, lots of wait and see if new medication works.

Here’s how our evening is going...We have been waiting since Tuesday to be admitted. The diuretics are not working.  Unf...
16/12/2022

Here’s how our evening is going...
We have been waiting since Tuesday to be admitted. The diuretics are not working. Unfortunately the hospital is so full it they have not been able to get him admitted.
Well today we had a bit of issues and currently in the ER. Looks like he is being admitted.

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