Rejection

This week has been one for the books. Many of you know that is was surprisingly discovered, especially where I wasn't showing any signs or symptoms, I am in acute rejection.  Levi shared the following Facebook update on January, 8th.

Stanford called today with the results of the bronchoscopy and biopsy Sandra had done yesterday at her 9 month post transplant checkup. It showed signs of mild acute rejection (grade A2) in the lungs. All transplant patients go thru rejection at times so it wasn’t a total surprise, that being said, we were kind of hoping to get a year or two under our belts before she had her first episode. The good news is that because it’s mild she doesn’t have to be admitted to the hospital, the bad news is she will need to have high dose IV steroids administered for 3 days to fight the rejection as well as get a repeat bronchoscopy and biopsy at Stanford 6-8 weeks later. Thankfully we can get the IV steroid treatment done back in Utah at the University of Utah outpatient transfusion center. Sandra was also already scheduled to have a heart ablation procedure done at the University of Utah this coming Monday to address the AFIB\heart flutter she has been having. Stanford is ok with this proceeding in spite of the lung rejection so the next few weeks will be busy ones. Sandra and I are trying to remain positive and stay in good spirits. We appreciate all your love, support, and prayers. We will keep you posted as things develop.

For those interested, here is a link to an article by the American Thoracic Society on Lung Transplant rejection. 

https://www.thoracic.org/patients/patient-resources/resources/lung-transplantation-rejection.pdf

On Sunday, January 6th we flew down to Palo Alto for my 9 month post transplant follow up. On Monday, we attended clinic (blood draw, X-rays, PFT, and vitals) and then met with the transplant team. The transplant doctor and coordinator looked over my results and said everything looked really good and that I was not showing any sign of rejections. It was such good news to hear. I felt as if our luck was changing. I have been feeling like I'm getting stronger and healthier as well. I had noticed that a constant cough I've had since the transplant was getting a little worse, mostly just annoying. So I didn't think much of it.

After transplant clinic I was scheduled for my bronchoscopy. I woke up wheezing and grasping for air, which is common, but still was a little nerve racking. After an X-ray to confirm that I was not bleeding, I was released. We ate dinner and headed back to the airbnb for a good nights sleep.

I was scheduled to meet with my neurologist Tuesday afternoon where we received more good news that over the next 6 weeks I can wean off my anti-seizure meds. Yay! That will hopefully continue to clear my mind and help with my cognitive processing. After meeting with the neurologist and while waiting for my psychiatrist follow up appointment, we received a call from my transplant coordinator. She informed us that the bronchoscopy results came back and that I was in mild acute grade A2 lung rejection and would need to start high dose IV steroids. That was a big blow for me. I was in shock. I was scared. I did not know how to process that information. What did it all mean? Am I looking at a future full of more painful medical treatments? Will I ever get a break from all of this? Can I mentally take on more challenges?  I held back tears and proceeded to my psych appointment. Dr. Sher asked me how I was doing and I started crying. For the rest the day I just felt numb. I kind of mentally checked out. 

The next day, Wednesday, we were able to stop by Suzy's house for lunch. It was so nice to meet Suzy's mom. She is a doll. I just love those ladies. Visiting with them was exactly what I needed, plus the food was delicious. I wish we could have stayed longer, but we had to hurry out to meet up with the transplant support group. Then we had to sneak out early from the support group to catch our flight home. 

On Thursday, I had my hour long heart MRI to prepare for my heart ablation that is is scheduled for Monday, January 14th.

In other exciting news, yesterday Friday, January 11 I graduated from cardiac rehab. It was sad to say goodbye to all the employees who worked with me. When you see them 3 days a week for several months, they become good friends. They kept me motivated, helped me grow stronger and taught me a lot. I will miss them. Below are pictures of a few of the team members who worked with me. 

I received a UofU Cardiac Rehab shirt at my graduation. Now I'm on my own. Thankfully, I've been given great instructions and have supportive friends who have volunteered to exercise at the gym with me. 

On Friday, I felt horrible. My cough had become worse and I was coughing so hard that I would gag and dry heave. I barely had enough strength to complete part of my cardiac rehab exercises. By the time I got home, I had 30 minutes with the help of my mom and Levi to unload\put away groceries and prepare for my first infusion. I burst into tears from exhaustion and pain. My body was too tired to go on and I just hurt all over. Levi gave me a give hug and comforted me. Then my friend, Ali took me to get my 1st of 3 infusions. For 3 days I will go and sit for over an hour and have high doses IV steroids pumped into my body. I'm not super thrilled about it. Thankfully, I have not yet experienced many side effects from the steroids. I definitely look as bad as I feel and I'm totally okay with with it. To be honest I really don't care. I'm hoping to find some relief and rest soon. 

Here is a picture during my first infusion.

I'm so thankful for friends and family who generously give their time and energy to take me to appointments and run errands, visit with me, and wait for me during all these procedures and appointments. I am loved and blessed by an amazing support team whom I would not be able to survive without.

Next up is my heart ablation on Monday. Wish me luck.

Here is some information that I found interesting.

This screenshot shows 11 heart/lung transplants were performed in Region 5 in 2017, the year prior to my transplant. Region 5 has performed the most heart/lung transplants. There are 2 hospitals in region 5 that perform them, Stanford and UCLA. Stanford performed the first heart/double lung transplant in 1980 (the year I was born) and has the highest transplant statistics. They have never lost a patient during a heart/lung transplant, but have lost patients after transplants due to complications like strokes, rejection, etc. 

This list shows 13 heart/lung transplants were performed this past year in 2018. It is surreal to think I am counted as one of them. I personally contributed to changing that number. A couple weeks before I got my call I was informed that 3 others had already received their heart/lung transplant that year. 

This screenshot shows that 16 people (including me) were on the heart/double lung transplant list. I cannot explain how it felt to see that I personally changed that number.

This number shows my count when I was removed and non longer on the waitlist. WOW! Extremely humbling. 

Today there are currently 19 people in Region 5 on the heart/lung transplant waitlist. 

I found this and thought is was very fitting for my journey. I know organ donation is not for everyone and it is a very personal and difficult decision. However, I am very grateful for those who have donated and especially my donor and donor family for their gifts. At times I feel very selfish for taking 3 organs. That is up to 3 other lives that could be saved.

I'm very thankful for a loving Heavenly Father for always keeping a watchful eye over me. Whenever emergencies arrived or I've needed some form of medical attention someone has been there to bring it to my family's and medical staff's attention and addressed it as quickly as possible. I know they have been guided.