Yes, I know it also costs a lot of money to do the testing to come up with more customized dosing. I likely wouldn’t have had the issues I did if I took lower doses than I was, but then we want the dose high enough to knock out the bacteria that is causing the infection.
Very interesting and exciting. Will they dose by weight and check drug levels or titrate till side effects.
I’m not sure what she will write up in her report, which she will provide to me and all the docs I requested. I will wait and see what the ID doc I see in Denver has to add to this and then will work with my HI Pulmo and HI allergist to come up with a plan of action that we can work with. It is just a relief to find out that as I have always thought, I am NOT that complicated and NOT in any way near needing a lung transplant. PHEW!
Had a good visit with my Stanford pulmonary and he’s ok with providing remote care. Have a visit with another pulmo tomorrow and then a team of MDs in June in Denver. It’s fascinating to hear the different strategies for treatment. So far, we like the ideas from the Stanford pulmonary. I am curious to see what the others suggest.
Ok. The UCSF Pulmonologist tested me and will document that I need 4 liters/minute of O2 to strenuously exert myself or even just to walk at my preferred speed. This is the first time testing has shown this at sea level. When I get the formal written report and can share it with my local docs, we will see what I can get in HI and Denver, when I will be there for medical exams in a few weeks.
@HImom, did you ever get a HEPA air purifier? I suffered from debilitating allergies for years. I was grasping at straws trying to find a fix and on a whim bought a free standing HEPA air purifier for our bedroom. I was amazed by how much it helped.
This is the one that I have. They aren’t cheap but I have used mine for over 15 years. The filters are about $75 per year http://www.sears.com/whirlpool-whispure-air-purifier/p-03285103000P?prdNo=2&blockNo=2&blockType=G2
We rarely use air purifiers–mostly we just keep the windows open most of the time. My allergies are mostly OK and controlled with nasal steroid every nite. The drug reactions are NOT allergies according to the ID doc at Stanford.
Ok, I’m heading for an intensive 4+ days of evaluations with top specialists and additional testing to figure out what I should be doing going forward and give my local docs some guidance. My D and H will be with me, for extra eyes and ears. It should be very interesting.
I am so grateful to have amazing insurance coverage, which allows me to get the information I need to optimize my health.
Sending you the luck, @HImom
Well, have learned a ton in my 10 days in Denver. I have definitely had the most thorough evaluation of my life!
I learned I have unpleasant and unusual reactions to meds but NOT allergies to them.
I do NOT have sleep apnea.
I DO aspirate when I have more than one sip at a time (can’t safely chug). Did get swallowing exercises I will have to do from now on – hopefully will keep me from getting future infections and pneumonias.
I DO have a cardiac shunt that the docs have to decide whether and how to treat.
Even if I do have latent TB, probably best NOT to treat.
I DO have reflux and will likely be treated for it.
Those are the main points.
Oh yes, I got the cell phone # of my Pulmo and am to call him if I have health issues, as his email and text don’t always work when he’s traveling. He will help me find a good Pulmo in CA.
Sounds very productive, @HImom!
Just got a call from my HI internist’s office, wanting me to come in for a TB skin test. That will be unhelpful and will be something I will have to discuss with him, to help keep him in the loop.