I’m Sorry What?….2 Weeks of Testing?

Remember when I mentioned to all of you about the transplant workup? Well, you may be reading this and thinking, “Yes! This is what I was wondering about!” or not… Either way, chances are you know or know of someone who is facing the reality of transplant! Keep in mind that what I share with you all is what I went through and experienced. Not everybody will have such similar paths especially if you’re getting a different organ. I would think some of these are non-organ specific but again, I’m not the ordering physician. 
Essentially you’re having a complete body scan. They’re checking your blood type along with all aspects of your blood. One thing you will become familiar with is CMV. Cytomegalovirus (CMV) is a virus that is relative to the same virus that causes herpes. In people with “normal” immune systems, symptoms may include things like a sore throat, fever, fatigue, and even swollen lymph nodes. In other words, it really doesn’t affect them nearly as much as it affects someone with a compromised immune system like us transplant recipients. Okay, so how can one contract this nasty virus? This little devil is spread by direct contact with an infected person’s blood, urine, saliva, semen, tears, and even breast milk. Due to my compromised immune system, I am at a much higher risk of getting the virus. Thankfully for the past 8+ years, I have remained negative for the virus. Hopefully, you are too! Now if you are like most of the general public and test positive it doesn’t mean you’re not getting a transplant, just means you’ve got an obstacle to face that I don’t.
The doctors ordered a VQ scan of my lungs. This is a perfusion test to see how much oxygen is getting to my lungs. Along with the perfusion test, they did a right heart catheterization. Why though? In my case, it was to check and see if I had Hypertension. Hypertension is just another word for high blood pressure. However if not treated, can lead to a lot bigger issues down the road. I did a full set of pulmonary function tests which provide numbers for total lung capacity, how much air you can blow out in a second, and how much air you can exhale after taking a deep breath. I had blood gases frequently to check the amount of oxygen and carbon dioxide in my blood to make sure I wasn’t retaining co2. Also gave them a good idea of how much supplemental oxygen I required to maintain my o2 sats above 90%. A 6-minute walk is exactly what it sounds like. With my oxygen on, I would walk for 6 straight minutes and see what my oxygen saturation would do. If I could maintain above 90% then I knew I was getting a sufficient amount of oxygen to my blood. I can’t begin to tell you how many chest x-rays you’re about to endure! CT scans to check the anatomy of your chest cavity to make sure new lungs will fit and nothing will obstruct during surgery. I had to have a pH study which was a probe inserted up through my nose and down to the bottom of my esophagus and top of my stomach to check for acid reflux. Acid reflux, in my case, is thought to be a leading cause of my fibrosis. ECG to check your heart pumping and making sure no irregularities or concerns. I met with doctors in thoracic medicine, palliative care, psychology, nutrition, infectious disease, and more. It is an exhausting couple of weeks for sure but with the right mindset and attitude, you’ll find the courage to get through it all!
Once all the data is collected, it’s time to wait. The doctors then take all of your results from all the testing and decide on whether or not you are a candidate for a transplant. If you are, then you are listed with UNOS, and if you’re not suitable then they will explain to you why you weren’t approved. Yes, money is a reason as to why some patients are not listed. So, next time someone you know or see someone fundraising for their transplant, it’s not because they’re looking for a pity party or some extra spending money, they’re trying to get their financials to be put on the list! It’s not fair but it is reality. I know from experience. Every dollar counts toward that goal of whatever you set. I can’t begin to tell you how my community came together not only once but twice to support myself and my family through both of my transplants. The power of a small town is so strong when help is needed and you have pretty deep roots. I am blessed to have that in my life and all of you who have and continue to support me. 
Now is the real wait…but don’t worry I was kept busy. I was placed in a cardio-pulmonary rehab class three times per week. This may sound all nice and country club-like but let me tell you, the nurses I had, kept my butt moving! I had to maintain my physical activity while I waited for my call so that I was strong enough to survive the surgery. It’s funny because you have to be “sick enough” but not “too sick” for a transplant. Not in my experience but some have to obtain a certain BMI to get put on the list. These are all things I learned about through my journey that I never intended on learning. So between doctors visits, testing, rehab 3 days a week, I really didn’t have a lot of sitting around. During my second transplant which was earlier this year, I definitely didn’t do much sitting around as I was busy with my 3 children. People thought I was crazy for trying to take care of 3 kids under 5 years old but it was a great distraction and now memories of life through a transplant. Everybody’s story is different! Shoot me a comment or message me directly with how your experience was or is going! I’d love to talk with you about it and share more details of my experience.

Be happy & healthy! Merry Christmas from our family to yours 🙂

1 thought on “I’m Sorry What?….2 Weeks of Testing?”

  1. Hello Ryan my 61 year old husband just received a double lung transplant on 12/15/20. His surgery lasted 13 hours. He spent a few days in CT ICU before being transferred to the transplant floor. He currently has a fungal infection and is retaining fluids. Not sure if this is common or not. His surgeon is happy with his progress. He was to be discharged this Monday but because of the fluids they are going to do another bronchoscopy Monday. This is the 3rd one since his surgery. Do you mind me asking where you had your surgery. Thank you

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