MaineDoug Posted January 5 Report Share Posted January 5 I’m confused! And yes, the brain fog is bad. But I could be a Rhodes Scholar and have trouble keeping up with this stuff. I counted 10 active doctors and specialists. They all order MANY confusing and often conflicting orders, advice and most confusing of all labs! Every doc orders their own labs, in their own time frame, to different labs and through different communication methods. They write them, fax them, e-mail them, mail, mumble, it goes on and on. And no one gets a list of what’s ordered by whom, when, where, or how!?! AND THEN some get frustrated with ME for not having the right labs done! 🤬 I’M AT MY WITS END! I’m the sick, disabled and confused one. HOW AM I SUPPOSED TO KEEP TRACK OF ALL THIS! 🤪 Trying to chase down a potential hidden infection. GI pain/dysfunction with high WBC. The WBC jumped last August, I was told “it’s just your new normal”! My endocrinologist said yesterday “NEW NORMAL, WHAT THE **** ARE THEY TALKING ABOUT! YOU’RE NOT A NEW SPECIES, Homo Dougus’ FOR CRYING OUT LOUD”! Gotta love this guy! He called me from the beach in Acapulco to answer a routine question! Anyways, now I’m getting a new ologist out of this! A “Hematologist” Oh goody! More tests. Just ughhhhh! Quote Link to comment Share on other sites More sharing options...
Sarah Tee Posted January 5 Report Share Posted January 5 @MaineDoug, I’m so sorry you are having to deal with other people’s poor communication and lack of co-ordination. In the olden days, I suppose a good GP/PCP would take care of all this, but they seem to have died out. Your endocrinologist sounds awesome! Quote Link to comment Share on other sites More sharing options...
Jyoti Posted January 5 Report Share Posted January 5 It is of absolutely no consolation to us/the sick, but I know a bunch of doctors (none of them at all knowledgeable about our stuff) personally and all I hear is how broken the system is. FACT! We, your patients, have noticed this phenomenon as well. But seriously, they are leaving medicine in shocking numbers, presumably because they can't do the work they trained to do--10 minutes per patient with six of those on the computer making the necessary notes. To know that you had already had a particular test would require that they have the time to look over your chart (with coordination between other specialists) and see that you had that same test two months ago and the results were either normal or not. I also know a few surgeons and they are in crisis because so many of them are committing suicide. Which like I said, is not really a consolation. We'd like happy doctors who have the time to do what they yearn to do (I am giving them the benefit of the doubt here) and do it well on our behalf. But I think we are kind of the tip of the spear here, encountering the disarray and dissolution of the system. Since we have a multisystemic dysfunction, we need more specialists than most people. My sister, for instance, has an array of sort of run of the mill diseases of aging. All of them potentially quite serious, but all handled pretty nicely by a PCP. I go to the PCP and she is good enough to listen while I explain to her what is going on, and then she asks if there is anything she can do. She has NO idea. (Giving her lots of credit for listening and being nice, but....) So anyway, @MaineDoug, I am so glad you have such a great endocrinologist. A real human being who cares for his patients, it sounds like. It is a big deal, especially when so many of them sound so clueless. I hope the hematologist is of an equal caliber to the endo! Quote Link to comment Share on other sites More sharing options...
MikeO Posted January 6 Report Share Posted January 6 19 hours ago, MaineDoug said: it’s just your new normal I have had Doc's say well "it's just the way it is" and here i am sitting there thinking "what are you seriously kidding me". Little do they know at the time remarks like that just stirs the bees nest (with me any anyways). Hope all come out well for you. Quote Link to comment Share on other sites More sharing options...
GasconAlex Posted January 6 Report Share Posted January 6 I don't have this problem with lab results because I get a copy of all my lab tests. I then have this on hand to offer to any new specialist. They then consider the past results before deciding whether to redo tests because they are too old or add anything more. What's more is that outside of hospital settings I choose the lab who deal with all the tests even if these have to be sent away, and the blood draw is also done with a nurse home visit. Another example is a recent cranial MRI, since it was a bit of a wait as it needed a high end machine I had a different request from a different neurologist for a similar exam. I contacted the university hospital that was going to undertake the MRI and they were happy to look at the prescription. Because it was a similar exam they agreed to do both at the same time and then send both reports to both doctors even though the new doctor was not in practice at the hospital and at the same cost (although this is picked up by the state anyway in my case) Here we are expected to have copies of everything and everything also gets copied to your PCP/ GP so much less duplication of tests. The only downside is that when they ask you for extra tests / exams / specialist specialist visits you have to organise them but at least this means that the appointment times are possible to get to. The system here is not perfect but I'm glad I don't have to suffer like many of the rest of you. Quote Link to comment Share on other sites More sharing options...
MaineDoug Posted January 13 Author Report Share Posted January 13 @Sarah Tee, My Endocrinologist is awesome! Last Spring I was in a dentist’s chair and the dentist was too worried about my medical complexity. He told me he’d need to reschedule unless there was a doc he could talk to. I told him we had one chance, my Endo. In 2 minutes I handed over my phone with my Endo on the other end!!! And this doc is a Professor, Researcher and Lead Doc at one of the top ranked med schools/hospitals in the world. IF HE CAN ANSWER MY QUESTIONS IN REAL TIME, why can’t everyone else? 🤔 Quote Link to comment Share on other sites More sharing options...
Sarah Tee Posted January 14 Report Share Posted January 14 @MaineDoug, sounds like that saying “If you want something done, ask a busy person”. I am glad you have such a conscientious person on your team. Quote Link to comment Share on other sites More sharing options...
MaineDoug Posted January 15 Author Report Share Posted January 15 @Sarah Tee, I spent most of last year rebuilding and moving most of my medical team to NYC. I have 12 new “ologists” and I insisted that each be rated the top of their field and have overwhelmingly positive reviews/ratings. I don’t want any more excuses and I want results! Now, with my Pancreas on the line my very life is in the hands of my Endo and I’m glad he’s the great person, best doc, and a compassionate human! I don’t know how he possibly gets so much done, but I’m glad he does! Quote Link to comment Share on other sites More sharing options...
MaineDoug Posted January 16 Author Report Share Posted January 16 Great docs! I’m amazed at the dedication and stamina of my Endocrinologist and Rheumatologist. Both were in their offices working and communicating effectively with me all weekend AND today (MLK Holiday). And not only were they there, they were pleasant, respectful and listened, supported me. On their days off. At all hours. With warmth and compassion! GREAT DOCS! And a shout out to three great pharmacy teams, normally competitors, who spent ALL DAY, coordinating, authorizing and ensuring that my new essential (and incredibly expensive) med, CREON (my wife says it sounds like a space invader) is available for me tomorrow. I was confused, in pain and scared and I really appreciated the difference these folks made! I will be contacting all of their managers to express my admiration! Quote Link to comment Share on other sites More sharing options...
Pistol Posted January 16 Report Share Posted January 16 @MaineDoug I am glad everyone was watching out for you, and I hope the new med will finally bring you some improvement! Quote Link to comment Share on other sites More sharing options...
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