COPD EMPHYSEMA
General practitioners attitude to his diagnosis of COPD EMPHYSEMA. He said that any further tests were pointless and prescribed Trelegy. My psychiatrist insisted on seeing a pulmonoligist and after awaiting for three months I see the specialist on 13 July. I am also a recovering alcoholic and was addicted to the Benzos my GP has prescribed for years for panic attacks which exacerbated COPD. Life is not worth living at the moment as I am completely housebound. What can I expect at my first Specialist session?
Glad your psychiatrist is on the ball with you! May I first suggest of finding a new GP, this one sounds a little ?????? glad at least he/she gave you Trelegy to hopefully get you some relief for now.
As for your up and coming first visit to the Pulmonologist, I can only speak for what my first visit was like. It took a couple hours for they did a Pulmonary Function Test (PFT). It consist of blowing in different machines with and without inhalers. They had me walk for 6 minutes with a Pulse Oximeter to see what my oxygen levels ran while walking my normal pace and if I was having issues of loosing some breath / oxygen during this time. Of course some of the normal doctors office visit with weight, blood pressure and lots of questions 😀. Of course not in the order in which I wrote them either. Nothing painful to me anyway. Once all the testing was done I was fortunate enough to get the answers to my problems right then and an updated treatment plan started. Now I go for routine check ups with the pulmonologist to keep track of any changes.
May I suggest, until your appointment, if you can get a Pulse Oximeter (local pharmacy) which are pretty inexpensive and keep track of your oxygen levels during just normal everyday things you do. Take that with you to your first appt with the pulmonologist, which could be helpful for not only you to remember, but inform the Dr of course. Educate yourself on this site and or other sites about COPD / Emphysema and if you have any questions, write those down too for your visit to make sure you get your answers.
I wish you the very best and looking forward to hearing how things go for you.Thank-you for your advice. I have a pulse oximeter and I will keep a record for the pulmonologist! It never gets above 85 (resting) and often drops to sixties moving from one room to another! Crazy! GP says this is quite normal for my age and condition !!! I am 69! You've really put my mind at rest about seeing the pulmonologist..Really appreciate your input! Hope all well with you and thanks again. 
Hi Wendy, and thanks for your post and responses (to our good community member, ) - I see she has been very candid in sharing information about her pulmonologist as well as the disease.
As dltld has intimated, I would also suggest you look for another internist (GP), one who is more attuned to your general health and has an interest in your well being and your future, as well!
I am hopeful the pulmonologist, as suggested by your psychiatrist, will provide you with a thorough work-up, physical exam, diagnostic testing (as appropriate), a definitive diagnosis, and suitable treatment and therapy. With the right approach, my thought is that you can be made to feel much, much more comfortable managing this disease (COPD). It appears the three-month wait is almost over and I will wish you 'good luck!' for your upcoming appointment this coming July 13.
Please do check back and let us know how this all turns out for you. Remember, too, life IS worth living - sometimes, all it takes is the right team of medical care specialists to get one back on track!
If there is anything we can do to assist you, please let me or any other moderator / team member know. You are always welcome here!
Warm regards,
Leon (site moderator COPD.net)
Thankyou for your reply Leon! My psych team all agree that I need to change to a GP who is more understanding. They have suggested one that they approve of so I will see her after the pulmonoligist. It would be unfair to ask her for a referral which the pulmonoligist requires. My psychiatrist wants me to have the test results sent to him as well.A tricky situation as I have been with my present GP for over thirty years now as are my whole family! It seems that after my addiction was out in the open his attitude changed and I have been told that is often the case. Some doctors can't deal with it and patients taking things into their own hands. Very sad as depression and anxiety are also illnesses!
Thanks again for your support. I will keep you posted! And thankyou for this group. It gives me hope!Hi again, Wendy - you are most welcome! Hope - that is what is so important. It sounds (to me), like you are on the right track. It is understandable the concerns you may have starting with a new physician. This is especially so since, as you've shared, you have been with this particular physician for more than 30 years. However, if this doctor is not really helping you any longer, than I think the psych team has given you sound advice.
I will look forward to hearing back from you, moving forward.
Enjoy the rest of the weekend!
Leon (site moderator COPD.net)
I think you are courageous for advocating for the care you need right now, especially while dealing with the heaviness of depression/anxiety on top of everything else. It's not easy! We often say here that your doctor works *for you* -- it is their job to help you meet your goals, and ideally, the two of you would work as a team. You need someone who is really in your corner and on the same page about your health, including your sobriety. It's hard to leave a practice that you've been with for so long, but I hope this new pulmonologist is the first step to more positive changes for you, and maybe a new GP. We are here for you, and you're not alone. Please know you can always come here to chat with us! Sending hugs! -Melissa, copd.net team
Thankyou Leon and all other folks who have given me so much support and reassurance! I did change my GP this week so that I had a referral for the pulmonologist on the 13th July. She was so empathetic and I now realize how inappropriate my past treatment has been!! One thing she did say is that there are no breathing sounds from my left lung. Is that normal for this kind of condition? She also warned me against all exercise even housework until I see the pulmonoligist as I could go into heart failure. Will keep you posted and thanks again!
Hi again, Wendy - you are quite welcome! It is actually a large part of what our community is all about. I am so glad to hear that, with your new internist, you feel you are already being taken care of in a manner that far exceeds your previous physician's care. If you are concerned about the comment related to breath sounds, you may want to reach back out for the physician. It is possible she meant something entirely different (than what you are thinking), and it would be best to have some clarification of her remark. With COPD, breath sounds can actually vary from patient to patient. They can even vary for the same patient, so the doctor will be the best person to guide you in this regard. What do you think?
Leon (site moderator COPD.net)
Hi Leon! Hope this finds you well. I said I would give you update on first visit to pulmonologist after GP said further tests were 'a waste of time. I saw the specialist on 13th July and had breathing tests, arterial blood gasses and MRI done. It is Stage 3 EmphysemA and I am now on 24 hour home oxygen! Worried about lack of exercise as when I remove the canula sats fall to between 60 and 70. Apart from selling a kidney to buy a portable converter will time off the present one improve and if so what should I look for in a Portable? Many thanks for all the previous advice!!%
Hi again, Wendy - so good to hear from you again! I appreciate your diligence in following up here with the community. You must be gratified with the new physician - not only do you have a more definitive diagnosis, but a treatment plan is in place as well.
And, good for you! Already adapting to, and further managing the use of supplemental oxygen therapy. From my perspective, you are taking the right approach by looking for a portable system so you can remain active and also continue exercising at your own level.
As it turns out, we have a good amount of information here which focuses on the use of supplemental oxygen and how best to use the equipment in different real-life situations. For your convenience, here is a link to much of that information: https://copd.net/search?s=portable%20oxygen%20concentrator.
After looking through all this material, should you want to discuss it further, we will be here to talk about all your concerns. Remember too, that your doctor will be a good resource to avail yourself of, too.
Good luck!
Leon (site moderator COPD.net)Wow what an update! Good for you finding a doctor that cares about his/her patient! Very excited for you, can't wait to hear how you do with your next endeavor with the portable oxygen, I too am currently looking in to getting one, a few hoops to jump through but I am ready for the challenge, hope you are too!
