A Journey Praying for the Gift of Breath

A Journey Praying for the Gift of Breath This is just a place to be able to share my feelings through the journey of lung transplant from the beginning.

I don't know why but recently I have had the feeling to just throw caution to the wind. I don't know why, but life is to...
07/08/2022

I don't know why but recently I have had the feeling to just throw caution to the wind. I don't know why, but life is too short to stop yourself from doing what you want.

I give you permission to go have fun. Try new things. Stop putting off the that activity you have been wanting to do because you don't have time, money, patients, whatever. Everything will be okay in the end.

I have loved fishing since I was little. However I don't go very much anymore. Maybe some trout fishing here or there. The other week I told Keith that I want to go salmon fishing.

Well today we went on a guided salmon fishing trip today with Jesse from good ol' boys guided fishing.

He was amazing. One of the kindest fishermen I have ever met! He was SOOOO kind with our son as he was learning.

We are going to plan another trip with Jesse with all the kids!

I caught the biggest fish! No really I did.

Keith lost a monster! It weighed like eleven-ty seven sixty two pounds and was like 46 feet long. I'm joking, but it probably was at least 40lbs. It tied up our boat with 3 others. Everyone's poles and lurers were a tangled mess.

It was worth the drive. The early morning. The cold. I only have truly regretted the things I haven't done. So let yourself experience all the joys that life has to offer!

So if there was a time for me to die, it would have been last year. However God said no, literally. At that moment I tru...
06/27/2022

So if there was a time for me to die, it would have been last year. However God said no, literally. At that moment I truly understood that only our Lord and savior decides when he calls us home. So I decided to do something I've always been too chicken 🐔 to do.

Friends.... meet Black Betty!

As I sit here deep in thought, I have a very difficult time pulling myself out of my own pity party. Tomorrow I will hav...
05/26/2022

As I sit here deep in thought, I have a very difficult time pulling myself out of my own pity party. Tomorrow I will have surgery yet again, this will be the 5th one, to try to fix my airway.

Tomorrow they will place a plastic coated metal stint in my left bronchial tube to hold it open. This was supposed to happen last week, but no one decided to take into consideration my severe metal allergy. As they were going to place a plain metal one. Thank goodness the doctor overseeing the procedure is the same one who did the transplant. Therefore, knew of my allergy and stopped it.

I went to sleep believing they were ready willing and able to place a stint. Then woke up still not being able to breathe and told I have to wait another week. I have never been so angry at any medical professional. The nurses threatened to call security on me.

If this wasn't enough, here is the reason for my pity party, my doctor then told me i have developed chronic rejection. In the last 4 weeks I have lost 10% function in my lungs. We are praying that the stint helps give some of this back. My team is going to try to stop the rejection with some kind of cancer treatment. I had it before right after the transplant. I don't remember but Keith swears I did.

All I want is to just watch my children grow and be a cranky old lady with too many animals with Keith. At every turn I just keep getting more and more to deal with. This usually doesn't happen for years after transplant. The trajectory of function the sooner it is developed is not good. But I have to be positive right? I pray they are at least able to stop the continuing loss of function.

This year has been hell, but I would do it 10x's over if it means more time with my family. Your time here is short. It could be a whole lot shorter than you plan. Just enjoy it. Find meaning. Do what you want to accomplish. I haven't done what I have wanted to in my life, but I'm grateful for what I have. I've been living in borrowed time as it is. Here's to trying to squeeze out as much time as I can with these wind bags!

I know that it has been a long time since I have written anything here in a long time. Things have been very turbulent. ...
05/02/2022

I know that it has been a long time since I have written anything here in a long time. Things have been very turbulent. Emotionally and physically, I have been all over the place.

First, I am about to celebrate my 31st birthday!! This would not have happened without my donor! She is the reason that I am still alive today. Her sacrifice has allowed me to continue to be a wife, mother, sister, daughter, and friend to my circle of people. I do know that without a doubt without her there would be no me. So, I am eternally grateful to her and her family.

That being said, the last nearly year has not been a cake walk by any stretch of the imagination. I never could have dreamed that it would have been this hard. Expressing this makes me feel that I am complaining or not grateful. That couldn’t be farther from the truth. I wouldn’t give up one painful, tear filled, excruciating, frustrating, exhausting, wonderful, God given second I have been given. If you want to hear the real story of how things have been please keep reading. If you are going to be judgmental, please move along.

First off, once I got home, I did not listen to the doctors like I should have. I couldn’t just sit and to nothing. I wanted to be up with my family and kids. I felt that I could do things better, just like my controlling self, or I didn’t want to be a burden. This led to problems arising. I had a very minor, strange, heart attack a couple weeks after being home. This sent me into the hospital for another week. I honestly thought that I was going to die right there in front of my kids. It was one of the scariest things I have been through. During the time in the hospital and for the next coming months, the doctors have tried to figure out what is wrong with my chest and why it causes me so much pain. In the end they cannot figure anything out. Everything always turns out normal. I have had chest pain but no other incident like this since then.



I have gone through a few rejections since I have been home. Each time it has been caught early and a 3-day stint of 1,000mg of prednisone have fixed the issue. I don’t know if it is the rejection or if it is the medicine, but going through that isn’t easy. It isn’t like on day 3 I am all better, good as new. My energy level is never consistent and I keep finding all the weight that others are losing.



Since October I have had a persistent dry cough and it has slowly become harder and harder to breathe. In November they did a bronchoscopy and found that my left bronchial tube was closing. This required surgery to go in there and stretch it out. However, after 4 of these surgeries, it still isn’t helping. The tube itself is getting smaller. Which is making breathing even harder. It feels like breathing from a straw. My doctor then tells me what he thinks is going on. He said that the tube is losing integrity and is becoming “floppy”. They ran a bunch of tests and don’t know why; however, at the end of the conversation I was told to lose weight. I swear, this is just the backup line doctors have when they don’t have an answer. I would have more respect for someone who just said they don’t know why something is happening but would do what they can to help me.



I go back to the doctor on Wednesday. I am planning to tell him how hard things have been. So much of the time I feel like I can’t breathe. I wake up several times a night in a panic because I can’t breathe. Kissing my husband stresses me out because I can’t breathe. I can’t keep going like this. I really need some kind of help. I will tell him all of this. If he is unable or unwilling to help me, I will be seeking a second opinion.



It is so easy to get stuck on the bumpy part of the road, I do have to make sure I look at the wonderful things that have happened as well. I have been able to go on a couple trips with my family and I was able to fly again! I am tired and it is hard to get there on time, but I need to make it more of a priority to go to church. I feel that my faith is just standing still. I need to water my faith and keep it growing,



This past weekend was my Godmother’s funeral. It has been nearly 2 years since she past, but my Godfather wanted to wait until a lot of the covid restrictions were lifted. This was so hard to have to go through; however, it was so nice to see people that I have not seen in many many years. Some of them I didn’t know but they knew me. They knew my mother and loved her dearly. To reminisce in this way was very cathartic. It also helped just remind me how lucky I am to have the life I do.



So, even though the road has been tough, it is worth the fight. As always, I will keep going and keep fighting.

08/15/2021

Well we are on our way to day 2 of steroid infusion. Normally I take 30 mg of prednisone in the morning. Now they are infusing me with a 1000 mg of prednisone. This needless to say is a massive amount. Last night I was so jittery I couldn't sleep and just was up doing little things which means that today I am extremely exhausted.

This swelling has already started although it isn't too bad at the moment. I have been told that I can use my supplemental oxygen when I need to especially when I'm sleeping. Last night I pulled my air off of my face at some point. I woke up gasping for air. I found my oximeter and took my 02 stats. I was at 79%. I am praying that they figure out what is wrong before it gets any worse.

There are 4 things that this could be.. One is donor specific antibody rejection this would be the easiest 1 to fix. Number 2 would be cellular rejection. This 1 is not as easy to fix and is a much scarier one. Number 3, which is one that the doctor really thinks that it might be, I can't remember what it's called I will try and ask today. And number 4 would be very very unlikely and rare. It is when fluid Backs up into my airway and cuts off my airway. My doctor does not believe that this is it.

If we have any more answers today I will let you know. But most likely we won't have any answers until tomorrow.I really do appreciate everybody who follows along with this process of mine. It makes me feel not so alone in this world as I am traveling down this path which really sucks.

I also wanted to say that I think everybody who has donated their hard earned money to me. I did not know how many supplies and medical equipment and bills that I was going to have to pay. That money that you guys have given me has gone to a good cause to make sure that I have everything that I need and that I am able to do all of the requirements and catch it when things go bad like they are right now. So thank you from the bottom of my heart for helping me and my family!!

Sometimes I swear I can't win for losing. Things haven't been great lately. I haven't felt well, chest pain won't subsid...
08/13/2021

Sometimes I swear I can't win for losing.

Things haven't been great lately. I haven't felt well, chest pain won't subside, and breathing has be very difficult. One night my oxygen levels were dropping for no reason. Sometimes into the 70s. My doctor told me to go to the ER but of course once there things looked fine. They did find some issues though.

Once home I spent the night feeling like I was suffocating, because I kinda was. My doctor called me and told me that I am showing signs of a hidden infection but also rejection. My doctor believes that it is rejection.

Tomorrow I go in for a broncoscopy. Then Saturday, Sunday, and Monday I have to go in for high dose steroid infusions. I am nervous. I just went through rejection, why must I again?

Tomorrow is an out patient procedure. I will let you all know what I know when I know it. Please pray this isn't rejection and it is easily fixed.

08/07/2021

Well I am home now. It took 4 days waiting for the cardiac MRI.

For the most part it was normal. However they did find that I had an infection in the muscle of my heart. It is taken care of now, but that seems a bit scary!

As for the other issues they found. They said that they are minor and nothing worth worrying about.

Right now I am just to focus on literally doing as little as possible and pain management. The dr wasn't completely ready to send me home last night but I couldn't stay there anymore. It is much better for me to be at home right now.

I really hope this pain resolves itself soon. It really does make it hard to breathe. I'll let you all know if things get worse and I have to go back to the hospital.

Well everyone I'm still in the hospital. They are still trying to figure out exactly what is going on. This is what they...
08/03/2021

Well everyone I'm still in the hospital. They are still trying to figure out exactly what is going on.

This is what they found out:

- Troponin levels were slightly elevated. Indicating at some point my heart was under some kind of stress.

- I have slight leakage in 2 valves in my heart.

- They do not believe that this is effecting my transplant.

I am now working more with cardiology to get to the bottom of this horrible pain. Today I am going in for a cardiac MRI. I praying this will give some more answers. I would love to go home to my babies.

#5, our youngest, just got done telling me the other day I wasn't allowed to leave any more. This all has been so hard on my children. Please keep them in your prayers as well.

I'll update you all as soon as I have more information.

08/01/2021

So last night after literally doing about nothing, horrible chest pain started. I sat down is it continued to get worse. I was brought to tears and couldn't talk.

I got a hold of the UW and they wanted me to go to the nearest hospital to get checked out. Once there the pain had become more manageable. I went through all their tests and couldn't really find a reason for this.

When I was about to be discharged everything spiked up again. I was horrible nauseated and the pain started to grow. At this point they decided that it would be best for me to go to the UW for further testing. However, we are still waiting to be transferred up there. I'm hoping soon because it still seems to spike when I start moving around.

Fingers crossed we get done here soon and can be on our way.

08/01/2021

Well we are at the ER for a sudden onset terrible chest pain. Please pray it is nothing and we can go home soon!

Oh my, my, my, my!This week has been exhausting! I have had so many follow up appointments and spent so much time in the...
07/29/2021

Oh my, my, my, my!

This week has been exhausting!

I have had so many follow up appointments and spent so much time in the car!

Let's go over the positives of the week first:

-My volume numbers have never been this high. They are also better than they were in the hospital.

-I am learning how to control my breathing better. Which is leading to better oxygenation.

-My endurance is improving

-My anxiety is getting better

Here are some of the hurdles for the week:

-I am building up fluid on my right lung. They are trying medication first to drain it.

-I have developed a slight cough. They are watching it. If you ask Dr. Google what it might mean, you will scare yourself. So, I'm just waiting on the real doctors.

- My body is starting to retain water again which makes my weight go up. Then that effects everything else.

There is just a lot to think about both good and potentially not. On top of that, the medical bills are starting to come in. On average, a lung transplant costs between $1 - 1.5 MILLION!! Now, I don't have to pay all that. However, my understanding is that we will be paying a good $15 - 20 thousand in bills. Yes, this is already going through all the channels they have and my insurance.

Thank you to everyone who was able to donate some of their hard earned money. Every little bit helps. We have been able to purchase the medical supplies I have needed. Fill our house with groceries. And next I week be making payments to the hospital.

I am not only thankful but I'm lucky to be alive. This is all just part of the course. One day we will be done paying off the hospital, I will be stable, and this will be but a distant memory.

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Why we are here

This is my story. This is my journey. Here is a place for me to work through the issues that come with the process of receiving a double lung transplant. Here, feel free to comment, share, ask questions, and interact. This is a place for learning, growing, and overcoming.

I met this man 8 years ago. We fell in love, moved to Washington, added to the family, and were building a life together. We had awful low points and hard times, and wonderful highs. We thought that we were coming out of a very low low. Then I was hit with this disease in February 2018.

Since that time we have gone through surgeries, illness, tears, and laughter. I was referred for transplant September 2019. This is a very scary road we are navigating. With the support of our family, friends, and God we will make it through.

This is my battle and I want to share it with you.