Health & Parenting, Home & Happiness

July 25, 2019

Transplant Evaluation Day 3

Yesterday was Day 3 of the Transplant Evaluation. I signed in for my CT Scan and put two cups of contrast dye into my feeding tube, then they accessed my port and put additional contrast dye through that during the scan. After that, we headed to my VQ Scan, where I breathed in a gas through a mask that was somewhat hard to breathe through, and I held still while they took photos, and then they injected some radioactive material into my port and took a few more photos.

Alex and I went to our psych evaluations where I did some weird memory tests and connect the dots things, and then we talked about the stress of the transplant and how to manage anxiety and whatnot. They asked Alex about his concerns about the transplant and how he is handling everything.

The CT people were able to find me a last-minute appointment in the treatment center at the Cancer Center to draw labs from my port instead of having to draw them from a vein. Some ladies were nice enough to offer me a bag of stuff for "Christmas in July", although I declined politely initially because I thought someone else could use it more than me. Unfortunately, after the treatment center nurse finally came in my port was clotted and we had to TPA it, so I was late to my appointment with the pharmacist and Strah. Instead, we met with a pharmacist and some other tx nurses to talk about transplant medications, side effects, and any drug interactions that might be a problem for transplant. They mentioned that some people go back on Symdeko after a transplant, which I thought to be interesting since it's relatively new. They answered all of our questions about transplants and mentioned a few test results so far. 

The CT I had done showed what appears to be a blood clot in the Brachial Plexus. The team decided they wanted a Venogram done on top of the Heart Cath I was already scheduled for. My ABG showed a low PA02, which means that there is mucus and plugging that makes it harder for the blood in my arteries to be oxygenated. They saw a lot of plugging in my small airways that could also be permanent damage, as well as a partially collapsed upper left lung, which has been there for a while now. A few other tests came out slightly abnormal but nothing alarming. They mentioned wanting me to do a pap smear and consider getting an ablation, as well as doing a formal, full sleep study where they hook up the chest and head monitors since I have so much trouble breathing and sleeping at night. They also mentioned switching around my reflux medication and potential testing for that, although none of my testing has ever come out differently for reflux and I couldn't ever do the manometry before since I can't tolerate it.

After the appointment with the transplant team, I started feeling dizzy again and told Alex as he was coming out of the bathroom. As it turns out, one of the transplant nurses was right behind me when I told him, so we checked to see if my blood pressure was still low (it was) and if my blood sugar was low (it was just below normal), so I drank some lemonade and had some graham crackers before we headed back to the treatment center to draw the labs they couldn't get earlier.

Finally, we were done and Alex got a burrito from Chipotle and I got to try nachos from Qdoba, which were great. We went to Goodwill and I sat in a wheelchair since I was still a little dizzy and having some problems. Alex made a friend and an older woman reached out to me and asked if I had CF, so we had a nice chat about some stuff and then went our separate ways. All in all, an okay day.



CT Scan w & w/o Contrast 6:45 AM: A CT scan uses X-rays and a computer to see various parts of the body without cutting it open.

VQ Scan 8:45 AM:
Examines air flow and blood flow through the lungs via breathing in radioactive material and being injected with radioactive material. This test can detect blood clots.

Psych Eval 9:45 AM:
Discussing patient and caregiver requirements and expectations for transplant


Meet with Pharmacist 12:45 PM:
Discuss medications 

Meet with Transplant Pulmonologist 1:45 PM:
Meeting with Dr. Strah

Labs 3:30 PM:
Toxoplasma godii antibody IgG, HLA tissue typing, IgG, IgA, IgM, Epstein-Barr virus antibody panel, HSV types 1, 2 IgG Panel, Toxoplasma godii antibody IgM, Anti-neutrophilic cytoplasmic antibody, ABO/RH, Varicella Zoster Antibody, IgG qualitative, Antinuclear antibody IFA titer, Hepatitis B Surface Antibody, HIV antigen/antibody panel, Glucose 6 phosphate dehydrogenase, Treponema pallidum (syphilis) antibody, Prealbumin, Hepatitis B Surface Antigen, Rubella, Rubeloa, Mumps, Nicotine metabolite screen, Hepatitis C antibody w/ reflex to Hepatitis C RNA quant

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