Sorry this is going to be looooong. As you may recall, the doctor who has successfully treated my lung organisms transferred from the U of Chicago to the bronchiectasis/MAC U of Texas medical center in Tyler last winter. The plan is for me to see my local pulmonologist for management of my copd and other lung disease and continue with Dr. McShane for monitoring of MAC, etc. The lab in Tyler does much more extensive sputum testing and so it makes sense for them to monitor the mycobacteria, various fungus, klibsiella and pseudomonas which have shown up in my past samples. However, I have had "issues" getting my stuff to the lab. (BTW, the U of Chicago, lost two of my 9 or so samples although I had hand delivered them.) There is a person at Tyler who handles out of state patients so Dr. McShane hooked me up with her. She is everything I have stereotyped in my mind about Texans – very friendly, warm. lovely accent, helpful and ending phone conversations with "Have a blessed day." She set me up with a patient portal (unfortunately they don't use epic so I can't link it to my accounts at U of Chicago or Northwestern). She sent me three sets of containers for mailing sputum and told me to take it to the post office.
At the beginning of April, I filled a specimen cup, put it In the container and decided to send it via Fed Ex. We have a receiving room in my building and Fed Ex picks up from there. I didn't want to go into the post office to have it weighed and sent (covid 19!) Fed Ex allows us to use our own packaging but pay a bit more so I put the container in an envelope and taped it every possible way it may open, stuck on the label I printed and Fed Ex picked it up for two day delivery, Two days later, Fed Ex informed me that the lab had refused acceptance. What??
After several phone calls to the wrong labs, I talked to another wonderful Texan in the right lab. She was furious on my behalf that my sample was turned away and promised to look into it. She called back in only a few minutes to tell me that the envelope Fed Ex wanted to deliver was EMPTY! She told me that I don't need to go to the post office, just drop the container which is labeled for delivery in a mail box. The lab would pay the postage. So I prepared another sample and put it in the mail. A few days later, test results began appearing in my patient portal. Finally, all the results were "final" – candida (a yeast that had also shown up last October) and staph. Dr. McShane said that we wouldn't treat either and to send another sample in July.
In June, test results starting showing up again in my patient portal but I had not sent another sample. Dr. McShane and I figured out that Fed Ex must have found the sample and, because the container only has the lab address on it, they delivered it there, And what did the tests show after the specimen sat somewhere for TWO MONTHS? PSUEDOMONAS!!! Good grief.
Dr. McShane wanted to see the next sample before deciding what to do. I picked up klibsiella and pseudomonas during a hospital stay in January 2019. It showed up beginning in June, and was gone by August. Perhaps Arikayce took care of it. Now it was back in a stale specimen sample I produced in April.
Oh, but that's not quite the end of this lengthy saga,
On July 27, I sent my next sample to Texas. This was my last container. I dropped it in the same mailbox as the one I sent in April but it didn't arrive. Dr. McShane even checked with the lab. No, they didn't receive it. I asked that they send me some more containers so I can try again. They haven't arrived yet.
On August 31, more than 4 weeks after I mailed it, Tyler's patient portal told me that I had results pending, Dr. McShane sent me an email saying that she was gong to be following the results. Last night, Sept 4, two results came in – good news and bad news. Acid fast – negative. but positive for pseudomonas. Even the post office cant kill those buggers.
For those who made it to the end – thanks for listening.