Final Stretch!
This morning started hectically. I was to have a right heart cath done around 1:30 pm but they came in early this morning, woke me up, and said transport was here to get me for my cath! While down there they told me that they couldn't give me ANY medication. I normally don't get anything for procedures but they usually give me a little Adavan to ease my nerves a little. But, they said they couldn't do that this time because it affected my numbers on my cath that was done two weeks ago.
When they do a right heart cath they do all the usual prep. You lay on an OR table, they connect you to all the monitors, sterilize, and drape everything but a circle on my neck. With my neck positioned to the left as far as I am able, the doctor injects some lidocaine to numb the surface. I still feel the burning and extreme uncomfortable pressure when they insert the catheter. Once the catheter is inserted the doctor turns on a scanner that is above my chest giving him a “live feed” of what he's doing so he can direct the catheter. Once in, he begins measuring the pressures of the right ventricle, the right atrium and the pressure in the lungs. He can also take indirect measurements of the left side of the heart. One of the other pressures measured is called the cardiac output—the amount of blood your heart pumps per minute. Another is the pulmonary vascular resistance, or PVR, which is the resistance the right ventricle must overcome to pump blood into the pulmonary arteries. There’s also a pressure referred to as the “wedge” but I don't quite remember what that measures. Then they give an “average pressure” which for someone who’s healthy should be 25 or less. Mine is 50. Once they get the numbers they need they then take everything out and apply pressure! When the bleeding stops I'm done! After the procedure I'm usually very sore like someone… well, stabbed me in the neck!!! (which I mean, they did.) The rest of the day mom and I just hung out!
The picture shown, is my actual scan from the right heart cath. If you look at where all the "white" is in the chest cavity, that whole area should actually be black and not have all the, for lack of a better word, "lines.” All the "crackly looking" spots are scarring and sclerotic tissues/veins. The two more defined lines are the catheters. The one looping is the catheter being used to measure the pressures in my heart. The other one to the left of it is the catheter that I have placed in my chest that pushes medication throughout the day 24/7 by my pump.
This morning the committee met to present me. When the doctors came in, they informed me that I have officially been accepted for transplant and that the meeting went favorably. Moving forward, I will continue to see them every so often until the day of the transplant unless I get admitted, obviously. They then said my allocation score, was 45-46 out of 100 which is above national average. (35 being the national average) The allocation score is a numerical value used by the United Network for Organ Sharing (UNOS) to assign relative priority for distributing donated lungs for transplantation within the U.S. Unfortunately, this isn't accurate until they put in my new updated results from this morning’s right heart cath which will be updated soon. Once updated they predict it'll go up to 50.
Now, I have to wait about a week or so for them to send my case file to Columbus to be processed by another transplant committee who will make sure the Cleveland Clinic is following the steps and rules of transplantation. Then, I’m officially listed! Which now that it’s here and official, it’s surreal. Feels more real now, like, this IS happening. Now I literally could get a phone call at any moment to go in and get my new lungs. I’m terrified but also sort of excited but at the same time feeling freaked about no longer having MY lungs in my body. Instead, I will have someone else’s lungs breathing for me. I have to admit I also have a little bit of guilt feeling any kind of excitement for my new lungs because someone’s life is ending. I’ve been told it’s normal for recipients to feel this way.
Anyway, receiving this score today starts the clock until I can breathe again and I finally get to have quality of life since I really do not have one right now. I will get to run with my kiddos, workout again, and do whatever I need to do! With how sick I have become I cannot even go to the grocery store by myself. I can also say goodbye to oxygen concentrators and tanks, nasal canulas, and a catheter in my chest going to my heart for medicine! Tube free!!!!!! I’m still processing, it hasn't set in quite yet. Sort of excited, sort of nervous and again, scared for the procedure. All this is well worth the rough road I know I have up ahead. I’m looking forward to the day I can look back at this and think “Wow, look at how far I’ve come.”
The clock has started!!