Problems with mailed samples and psuedomonas

Posted by rits @rits, Sep 5 12:32pm

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.
Rita

Holy Cow @rits! This sounds like a Laurel and Hardy act partnered with the Three Stooges. I would be at my witts end. Sorry that you are showing all of these bugs and hope you get them resolved. Take care and stay strong….your stamina is showing!! 🙂 Kate

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Gee Rita – It sounds like the story for a comedy routine, except it's not funny. I am lucky to be able to deliver mine to the clinic, who transport it to the MN Dept of Health for processing, then on to NJH for susceptibility testing. When I needed to send one from TX to MN, my brother was flying home & delivered it for me. It always astounds me how much disparity there is in medical service availability on our country.
Sue

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Dang, Rita! What an ordeal! So, will you be getting the pseudo treated?

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Yes, are you getting it treated? And has anyone else treated theirs and if so what did you use? I had it show up in my recent culture ( which was clear for almost a year) Since I had a reaction to a dose of levaquin in the hospital in 2016 my new local pulmonogist wants to try tobramycin which looks like it has some scary reactions info online

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@painter2

Yes, are you getting it treated? And has anyone else treated theirs and if so what did you use? I had it show up in my recent culture ( which was clear for almost a year) Since I had a reaction to a dose of levaquin in the hospital in 2016 my new local pulmonogist wants to try tobramycin which looks like it has some scary reactions info online

Jump to this post

Hello, I had pseudomonas that didn't respond to Levaquin and 2 other oral antibiotics so we went to Tobramycin. Like you I found the info online scary, but tried it anyway. It went well except dome voice loss, so I took a few days off, then finished the course and the pseudomonas was gone.
Sie

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@windwalker

Dang, Rita! What an ordeal! So, will you be getting the pseudo treated?

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I apologize profusely for not responding sooner to those who took the timr to read through my comedy of errors and respond. The digest is not making it into my email account and I forget to check in.

I contracted pseudomonas from a cpap I used during a hospital stay in January 2019. It showed up in my sputum last summer while I was treated for MAC and disappeared in the fall. Now it's back.

This is whst Dr McShane said; We can't really hope for it to go away. It's just important that we monitor how much there is and which antibiotics it is sensitive to in case you get sick.

Tyler does immediate susceptible testing and as I can see in the patient portal and as Dr McShane points out later in her note all the antibiotics should work if I need them.

Thanks for your support. Because I have felt sick for a long time I'm not sure what to look for.

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@sueinmn

Hello, I had pseudomonas that didn't respond to Levaquin and 2 other oral antibiotics so we went to Tobramycin. Like you I found the info online scary, but tried it anyway. It went well except dome voice loss, so I took a few days off, then finished the course and the pseudomonas was gone.
Sie

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Thanks! How many days were you on it? I think my script says 28 days

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@rits

I apologize profusely for not responding sooner to those who took the timr to read through my comedy of errors and respond. The digest is not making it into my email account and I forget to check in.

I contracted pseudomonas from a cpap I used during a hospital stay in January 2019. It showed up in my sputum last summer while I was treated for MAC and disappeared in the fall. Now it's back.

This is whst Dr McShane said; We can't really hope for it to go away. It's just important that we monitor how much there is and which antibiotics it is sensitive to in case you get sick.

Tyler does immediate susceptible testing and as I can see in the patient portal and as Dr McShane points out later in her note all the antibiotics should work if I need them.

Thanks for your support. Because I have felt sick for a long time I'm not sure what to look for.

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I hope your mail service improves as well as your health!

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@painter2

Thanks! How many days were you on it? I think my script says 28 days

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Yes, mine was also for 28 days and it worked.
Sie

Liked by painter2

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@painter2

Thanks! How many days were you on it? I think my script says 28 days

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I have never been treated for the pseudomonas. I was on Arikayce for 4
months starting in August and it may have killed it last summer.

What symptoms that it is growing and causing problems should I look for? I am always fatigued, no energy and feel sick a lot of the time but I attribute that to my ongoing digestive problems. I have had increased
mucus. Could that be from the pseudomonas ?

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@rits

I have never been treated for the pseudomonas. I was on Arikayce for 4
months starting in August and it may have killed it last summer.

What symptoms that it is growing and causing problems should I look for? I am always fatigued, no energy and feel sick a lot of the time but I attribute that to my ongoing digestive problems. I have had increased
mucus. Could that be from the pseudomonas ?

Jump to this post

I am not very knowledgeable about it but think I had an exacerbation, (slight bit of hemoptysis) this time of year seems to trigger my allergies which now seems to a small amount of hemoptysis, lots of fatigue and a headache, the next day a few infected sore spots showed up on my chest and a large spot on upon the top of my foot?( I'm not sure why but the spot on my foot seems to swell then deflate then swell again…I thought it was a spider bite at first.)
I think it irritated my pseudamonas though. I don't like to take medicines so this is the first time I try to treat it!

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@painter2

Yes, are you getting it treated? And has anyone else treated theirs and if so what did you use? I had it show up in my recent culture ( which was clear for almost a year) Since I had a reaction to a dose of levaquin in the hospital in 2016 my new local pulmonogist wants to try tobramycin which looks like it has some scary reactions info online

Jump to this post

Painter2, I did the nebulized tobramycin for 28 for the pseudomonas and it was gone after that. I stayed on the tobramycin for three more yrs every other month to keep both pseudo and mac at bay. Just went off all meds this past June. I only nebulize albuterol and 7% saline twice a day. Are you planning on using tobramycin?

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