January 11, 2023

January 11, 2023:

A few follow up tests taking place in Portland in the months following our time in Seattle. Then results to be shared with the Seattle team for a decision if Susan will be approved to be listed on the transplant list. Please keep her in your thoughts and prayers.

September 24, 2022

September 15-26, 2022 Updates:

It’s been a busy 12 days!

Sept 15 was a 3 hour lung transplant education class

Sept 16 drive from Portland to Seattle.

Sept 18 Covid testing.

Sept 19 a 6-minute walk test and meeting to discuss allergies.

Sept 20 a swallow test and insertion of a 24-hour pH study probe. Susan said it was the worst having those tubes pushed up your nose and down your throat. And the 24 hour test turned into 48 hours because the recording device wasn’t working correctly. Thank goodness we asked if the existing probe could remain rather than removing it and having a new one inserted.

Sept 21 pulmonary function studies which involved a variety of breathing exercises. Susan is down to only one of the tests actually registering on the equipment.

Also met with one of the transplant doctors to review medicines, discuss changes since our visit in late June and answer some questions we’ve had about transplant and the NSIP diagnosis.

Then off to have an esophagram where Susan drank something that was strawberry flavored (supposedly!) barium and watched a side view Floroscopy of her swallowing; it’s fascinating to see how your stomach looks like a funky shaped shrimp from a side view!

Then a meeting with the dietician and our assigned social worker whom we have all come to enjoy working with.

14 vials of blood drawn this time instead of the 29 vials in June so that seemed like a breeze in comparison; good thing Susan has a good flow of blood from her veins.

Lastly was a chest X-ray.

This was the longest day of tests… over 7 hours.

Sept 22 - finally got that damn pH probe removed!! Then off to another covid test before Friday’s appointment. Had a chance to hear a gentleman play the mandolin while we were in the waiting area.

Sept 23 left and right heart catheter procedure. They were able to go in through the wrist rather than the groin so the recovery period was much shorter and allowed Susan to sit up during recovery. Had it gone in through the groin it would have required her to lay flat for 6 hours of recovery which is not a good position for the condition of Susan’s lungs.

Sept 24 one more covid test in advance of Monday’s appointment.

Sept 26…the weekend prior to today’s appointments was hard as the air quality was poor in Seattle due to fires around the region. It sure impacted Susan’s breathing and had us concerned.

We met with Dr Mulligan and he explained details about how the diaphragm has been impacted and what to expect in the future. He discussed a single vs double lung transplant with us too.

From there it was appointments for the last two needed vaccine updates and then labs and new pulmonary function tests.

Now we wait patiently for the final decision. It sounded positive when we left so let’s keep up the prayers and positive thoughts. Thank you all for supporting Susan along the way. This will be a marathon journey!