Visit to National Jewish Health in Denver, CO

@rozie83
Hopefully you'll hear back from your allergist. I don't really understand why they would tell you not to have the IVIG infusions because of side effects. I've been having them monthly for over 5 years. I've since retired, but when I worked each year I would apply for FMLA in case I needed to miss work for a day or so after the infusions. I honestly don't recall having to miss work more than once because of it. Yes, I have had hives (once) and for the first few years would experience a low grade fever, maybe headache and chills the evening of the infusion, but all I would do is take another dose of the pre-meds(Tylenol and Benadryl, taken 30 minutes prior to the infusion) and go to bed, I would wake up feeling like nothing happened.
Rarely do I need to repeat the premeds after the infusions. In fact, I realized around 3 hours into my last one that I forgot to take them. I had no adverse effects at all.
If your allergist is also an immunologist (most/many are) I would follow their advice. Prior to being checked for an immune deficiency I was in and out of the hospital for years with respiratory infections. It has saved my life.j

@kpger Thank you so much for you input. I have an appointment with my primary care doctor who has been opposed to the infusion until now. I have not been sick except for covid a few years ago. My numbers are getting worse, so maybe I will reconsider. I really appreciate your telling me about your experience. Who gives the injection to you? My allergist is an immunologist. I did see an immunologist at NJH and he agreed I shouldn't do it. I'm 84 years old and think I've probably had this deficiency for years. Have to go. I'm keeping your note. Roz

@rozie83
I can understand your physicians being reluctant to order the IVIG if you haven't been sick.
I'm wondering if there is something else that they're considering? I was VERY sick for 5 years while they were trying to find out the cause. Finally, after a new-fangled CT I was diagnosed with BE. My right middle lobe was so damaged and infected they removed it several weeks later. That was 1996! I have BE throughout my lungs so further surgery will not be an option as it's on both sides. Fortunately, the infections are being kept to a minimum with the help of the infusions. I have them every 28 days, administered by an infusion nurse in my home over a 5 hour time period. Before I turned 65 I was going to an infusion center, but Medicare only pays for in home treatment. Go figure!
All the best to you and your care team.
Karen

@mydelta
Is your AARP supplement a medigap policy or is it your part D drug plan. What is your drug plan? I still need to decide on a part D that will give me the best chance of Brinsupri approval so I ask because of that. Great to hear Brinsupri is working great for you with no side effects I assume? Do you feel it would be working if your pseudomonas was not under control? Thanks for any insights.

@kpger Thank you, Karen. Good to know they have to do the infusion in your home. I have a call into my doctor and also have appointment with my primary care doctor. Earlier tonight I got a call from my pulmonologist's nurse at NJH. I asked her to double check about the infusion. His notes are very clear that since I haven't had any infectious disease I should not have the infusion now. In the future (hopefully not) the could change. I'm in Arizona where very few people wear masks, so I often do not think about it. It's supposed to get a lot cooler this weekend, but up to now I've been able to be outside a lot. I was going to have Thanksgiving at my house, but my daughter in law offered to do it, and I was very glad to let her. I'm too old to do holidays any more. I have 10 grandchildren and two greats. If anyone is sick, I won't go. They are all supposed to know that. I don't know if I know where you live. I moved here from Chicago and am so glad I am not in a cold weather place any more.
Stay well. Roz

@irenea8 Hi Irene. I am curious. Are you of Medicare age, if so how long and what type of health plan did you secure, an Advantage or Medigap/Supplement. I think it might be the Medigap/Supplement if I am 'reading between the lines' correctly. I ask because you have been stating you didn't get signed up as yet for the D Plan....if I'm not mistaken. If you need to sign up for the D Plan after possibly having been able to sign up for it in previous years....will you have to pay a penalty for late sign up??? Hope not.
Thanks again to you, along with Sue, for giving me your thoughts early on about my going on the antibiotics or not going on. You both helped me a great deal in doing what I feel has been best for me with the low load of MAI and still feeling well and without having started the antibiotics. PFT is fine as yet also. Some plugging in my lower left lobe of which I finally started doing the side position with postural drainage. Worst annoying problem, lots of need to clear out mucus during the day and much after eating.
Hoping you had many good days in October and wishing November to be lots of good days for you.
Barbara

@rozie83 You have done well with not having an infection and apparently not wearing a mask that much....if I am correct, I may overdo it but I wear an N95 most always when in public and especially when I know I will be around people, like in the grocery store.
Arizona from Chicago....that was a big change and do understand about not being in cold weather. However, I'm not sure which is worse....the high heat or deep cold....at least for me with Eczema.
Stay well Roz and infection free!!!!
Barbara

@blm1007blm1007
I am 74 and on traditional medicare with a supplemental plan (Aetna). I never signed up for Part D because I had no drugs to take over the years. So yes I will most likely have a penalty on the premium of the part D. We have a QSEHRA since 2017 which might negate the penalty but probably not. I still have to apply and find out. I have sort of narrowed it down to AARP or Silverscript (Aetna) Part D plan. Still deciding. It is a crap shoot.
One thing to keep in mind if you have BE and MAI is that you will always have some symptoms. You will never obtain symptom free normal lungs. Your symptoms are very minimal considering your age. I think you are doing all the right things. You might have to "accept" the annoying aspects of living with BE. Keep up the good work Barbara!

@blm1007blm1007 thank you, Barbara. I didn't know I had a disease until 3years ago. Never imagined it would be this. I probably should start wearing a mask in public. Thanks for helping me realize that. I suspect I've had BE for a lot longer than my diagnosis.
You also, stay well and infection free. What a club we belong to! Roz

@rozie83 I must have lost my original reply to you. So here goes again.
I also learned 3 years that I had BE. When diagnosed and I told nurses and others in the medical field that I had BE they said they had not ever heard of it and were just as new to hearing and learning of the disease as I. So many people are just learning about this chronic disease.
Glad you will consider wearing a mask in public. Better safe than sorry. Personally I prefer the N95 mask. I bought a large quantity of them on line for a good price but don't remember the source to be able to share that info with you.
May we all find our way to being infection free. Sure not a club we wish we belonged to.
Barbara