I arrived to St. Louis Sunday evening. My sister joined me early Monday morning since she was coming from Kansas City and me from Knoxville, TN. I must have someone (caretaker) with me at all my transplant appointments, it’s part of the deal. Luckily I have people to rotate, haha.
Day 1: First stop on the appointment list was for blood work/labs. They drew about 8 or 9 tubes of blood. All labs were ok. Next up was pulmonary function/lung functions. My fev1 (one of the main values they look at) was 28% which is consistent with my clinic here. Mind you a year ago I was 41% on their (Barnes) machine, which is a significant drop of 13%. I definitely can feel it. Next stop was the 6-minute walk. I didn’t walk as far and my O2 sats were lower throughout this time as well. Final stop for the day was an echocardiogram. They were checking for pulmonary hypertension which the test showed that I do not have it. Another thing checked off the list.
Day 2: First doctor was the allergy doctor to discuss my low IgA. IgA is an antibody that protects against infection of the mucous membranes lining the mouth, airways and digestive track. The way the doctor described it was that I am low but we needed some blood tests to find out how low I am. The original test showed I was below 50 but no value was given. If the tests come back to show that I am at 15 or lower than if/when I need blood products they have to be “washed.” If I am 25 or above then I am good to go and don’t need washed blood products. The in between area is the grey area that you go with your best estimate of what is needed at the time. Needing blood is common during transplant surgery. Now what is washed blood products you ask, glad you asked. The washing is to reduce plasma proteins. This reduces the risk for allergic transfusion reactions. Washing reduces IgA that could cause anaphylactic transfusion reactions in persons with IgA deficiency. So with all that said we are hoping and praying that the test shows 25 or above. It would be one less thing to worry about in this whole transplant process. While at the allergists office he wanted to skin test me for penicillin because I have always said I am allergic because I had a reaction as a baby. After about 2 hours of sitting there it turns out that I am no longer/not allergic to PCN. You can outgrow allergies you have as a kid. There’s a new wrinkle in your brain for today on all that knowledge I just dropped!
Last doctor was the pulmonologist. He asked how the last year has been and I just looked at him and said, “that’s a broad question.” He narrowed it down by starting to ask questions while going over his notes. We discussed a lot of stuff along with all the testing done the day before. Long story short I am to return in 2-3 months. In that 2-3 months I am to start exercising EVERYDAY! I need to get to where I can walk on the treadmill for 30 minutes without stopping. Right now that would be hard for me to do because I have to stop every so often while walking to catch my breath as it is. If you know me at all you know my disdain for exercise but it is what I have to do. I have to get in shape in order to make my recovery easier. I will be doing the same treadmill walking everyday after transplant, well once I’m out of the hospital that is. Also on this next appointment I will need to get a right heart cath. I’m not really sure for the reason except to check that my pumper is pumping like it should because of how tough the surgery is. At this next appointment I will also meet with the surgeons to discuss the actual surgery and be able to ask any questions we may have. After all of that we will discuss me officially being listed depending on how I am doing at that time. Being that my lung function was such a significant drop there is a chance it could come back up a little which could put off listing a little longer.
For everyone that has asked if I am “listed,” NO I am NOT listed. All of these trips to St. Louis (Barnes-Jewish Hospital) are in preparation to be listed. It is smarter to do all the testing that I can leading up to being listed rather than rushing around to get it all done quickly if I were to have another significant drop or end up really sick and need to be listed right away. I hope that makes sense.
If you have any questions just ask!
Until next time…
4 thoughts on “(Pre) Transplant Appointments”
This is all the prep just to get listed. I did learn something though, the blood products that may have to be washed. I’m so happy to hear no pulmonary hypertension, big plus right there. You’ve got this, exercise & all! 👍🏼
Thank you for the sharing of your journey.
Thanks for the update. I know this is all so overwhelming. Sorry you have to hit the dreadmill everyday. I know how hard it is when your lung function is low. Do you have a tv you can watch or book to read while doing it?
Yeah I have a TV and my iPad.