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My pulmonologist fired me
I am writing to reiterate what an abomination treatment at Northwestern is. My Interventional Pulmonologist (who I do like) had prescribed an inhaler called Breyna to help with the pain in my lungs and airways. It helped tremendously however it is a two medication formulation, one of which exacerbated my QT Prolongation. So he said he would send a prescription for Pulmicort which did not have the bad formulation. He said he should probably defer to the regular pulmonologist but would send in the prescription. I waited a week and no prescription. So I wrote back and asked where it was and if he wanted me to ask the regular pulmonologist. Another week and of course no response.
So I wrote the regular pulmonologist and asked for the prescription for Pulmicort. The nurse wrote back and said doctor refused. I asked why. She said she asked him and that Pulmicort would cause QT and I should just continue nebbing with Levalbuteral. I wrote back and said both the Interventional Pulmonologist and I researched it and it did not list that. Then I pointed out that Levalbuteral DOES have QT Prolongation listed as a side effect, so won’t he please prescribe the Pulmicort because the inhaler really helps with the pain in my lungs and bronchial tubes. I was not belligerent. The nurse wrote back and said doctor said since I don’t like his treatment I should find another doctor. I was leaning that way anyway because Northwestern is non-responsive in so many ways. Now I have no choice but to start over again at the University of Chicago.
I write this for anyone considering Northwestern for their treatment -DON’T. You will regret it!!! Go to the University of Chicago instead. I have no choice now but to do the same and start all over again with Infectious Disease, Pulmonology and Cardiology. And as we all know with new patients there is a three month waiting period. What a nightmare.
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@doberdoo ----Oh, dear, I too was fired by my first pulmonologist, it's not a good feeling. But in the end it turned out for the best - I now have a really great doc!
I would suggest that you acquire copies of all tests, scans and bloodwork that has been done to date (most should be available on your patient portal) Download them before your access is closed out, or get a DVD if you access is already gone. This will give your new doctors a complete picture of all that has happened so far.
Have you made your initial with the U of Chicago yet?
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2 ReactionsNo, I haven’t contacted UofC yet as it just happened yesterday. To be honest I am mentally exhausted at the moment and need a break from all of it before tackling getting re-established. The difficult part is that new patients are always made to wait 3 months for an appointment. I have never understood that because existing patients usually can get right in. Tomorrow I will call Northwestern Medical Records and request copies of everything including CDs of scans. But I know them by now and how difficult they will make it. I have to psych myself up to do battle once again. They (Northwestern) are mentally and physically draining. I am going to need an Interventional Pulmonologist, a treatment pulmonologist, an infectious disease doctor and a cardiologist. That equals a lot of waiting and a lot of appointments. So be it. I have no choice. I sometimes wish there was a place to document my story about NW and all the awful things that have happened. They truly are dreadful.
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2 ReactionsI’m so sorry you are having this struggle. I have seen 13 pulmonologists to date. I’m very fond of the two that I see on a regular basis—one in Honolulu and one at UCSF. I have some MDs that are in different medical systems. Is that not something that you can do as well? I have some at one medical system in Honolulu and others in another one, plus my UCSF lung doc and I’ve seen and been consulting with one at National Jewish as well. All the docs are fine with me seeing the different doctors and different medical systems. My current doctors are all on Epic MyChart, so it’s easy for them to see each other’s records.
If you like your other Northwestern docs, you can try just switching the one that “fired” you and see how that goes before deciding you need to find an entire new team. It’s a thought anyway. I’m very sorry that your interventional pulmonologist wouldn’t work with you to resolve your question and concerns before just deciding you should work with a different MD. 🙁
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2 ReactionsI was fired, too. My offense: going to Mayo for 1x visit while he was on 4 mo medical leave to get a diagnosis and plan. His nurse passed message along to see doc who did bronch. I’d only had one appointment. He’d cancelled the second appointment after CT and done an unplanned phone call about results that btw, showed bronchiectasis he didn’t mention. I already had scheduled an appt at Penn for a second opinion (few months out) and Penn doc has been great for me. I just had 2.5 months without one. I think original was a good general pulmonologist, but had a too busy practice and wasn’t that up to date on bronchiectasis.
I hope changing works for you, too.
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1 ReactionWhat is an Interventional Pulmo vs a treatment Pulmo? I just have a pulmonologist and never heard of that distinction. Thanks
"...wasn’t that up to date on bronchiectasis." That is an important point to make. Specialists have subspecialties and are really not up to date on everything. One should check if they are experienced about a specific area.
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2 ReactionsI am interested also to find out more about the interventional pulmonologist role for NTM and MAC. I was previously referrred to one early in my journey but unrelated to this diagnosis. I needed to have a rigid scope bronch done plus a balloon to open up the airways as I had a near pin hole opening to the right lower lobe. While this issue was due to aspiration, my ID says that isn’t related to the mycobacterium infection.
Hi Doberdoo,
I had to fire more or less my Infectious diease doctor out here, but I was truly blessed to find a Infectious Disease doc who Only Specializes in MAC! He is truly a wonderful doctor in all ways. He's calm, listens, smart, helpful, if you do my chart his nurse or him always writes me that day or the next morning.
U.W.Health in Madison Wisconsin. He only deals with MAC. Hes name is Dr Lanjewar
Hope this helps. Take care
Kim
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1 ReactionAt my hospital (Yale NewHaven) the Interventional Pulmonologists do the procedures, like bronchoscopies. I'm sure my pulmo COULD do one, but that's not how they divide the work here, so she refers me to them for the bronchoscopy.
Mayo believe Mayo also had interventional pulmonologist do my bronchoscopy.
Here’s AI info: An interventional pulmonologist (IP) is a medical specialist who uses minimally invasive techniques to diagnose and treat lung and airway diseases. They perform advanced diagnostic and therapeutic procedures, including robotic bronchoscopy, thoracentesis, and pleuroscopy. IPs work with a multidisciplinary team to develop individualized treatment plans for patients. IPs treat conditions such as lung cancer, pleural diseases, and complex airway and lung disorder
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