-
Your Doctor can Request a Second Opinion
-
Thanks, Robin!
-
@Lynn
I agree with Kate—move out of house during any remodeling. And if you have any carpet already in your house, have it removed and replace with something like luxury vinyl. Carpets are full of all sorts of stuff I can’t spell!
Robin
-
Hi Charlene and Kate! Sorry I took so long t respond but I did want to get back to you. Yes my pulmonologist did think that the Aleve contributed to the PF. He said he had 3 people in the office that were diagnosed with it that very day and the only thing they had in common with me was they took Aleve. The Napricin that’s in it is the culprit. I was taking a “therapeutic dose” as per my hip doctor’s instruction at 2 per day for years. I guess it’s kind of like smoking…not everyone that smokes gets lung cancer, but many do. Had I known I would have avoided it like the plague. Anyway, the first year the doc didn’t know I was on Aleve…and that year it increased by 25 percent. I stopped the Aleve immediately when he asked if I took it,and for the last 2 years there is no change in my x-ray that was a cat scan. So I’m pretty convinced it caused it. They did see some Hypersensitive Pneumotitis on the x-Ray. I’m not satisfied with that explanation so he’s sending me to Duke. They have not called to set up that appt. yet. I have a chronic cough that s sometimes productive, sometimes not, that noone is sure what is causing it. Been to an ENT, allergist gastro guy (reflux) and noone knows for sure. My pulmonologist thinks it’s post nasal drip, as the only thing that stops the cough temporarily is cough drops. I also am running low numbers on my oxygen levels….sitting and doing nothing 90-92. Moving around doing chores….84-87. I have to go back to my pumonologist for a walking reading as he thought he wasn’t getting a true reading cause of my dark nail polish. I believe it is a true reading. So….if my x-ray is showing no progression on the cat scan, why then have my oxygen levels dropped?? I have lots and lots of questions and hopefully Duke will be able o answer them. Robin’s post spurred e on to look at a second diagnosis, so thank you Robin!!! 🙂
-
Hi Mary,
Thanks so much for writing and I hope this note finds you having had a nice weekend! Really interesting to hear your Doctor connect the Aleve to your PF diagnosis. I’ve never heard of that before! I’d think that harmful ingredient in such a common drug would have been investigated more if they link it to such a life-threatening illness. Did your Doctor provide you with any literature on it? I’m going to see if I can find some and share it on the forums, as this is a very common drug that many people take. Really interesting!
I hope your appointment goes well at Duke and that they call you soon. I’ve heard great things about that center – will they be setting up a treatment plan to manage your IPF then? Or will you be considered for transplant through them? I really hope you find the answers you’re looking for, I’ll keep my fingers crossed for you. Please feel free to write any time and keep us posted on your appointment at Duke if you can.
Thanks,
Charlene.
-
-
@Mary Osullivan
I’m so pleased that you’re going to Duke with lots of questions. Write them down as you think of them while you’re waiting for your appointment. “Remind” your doctor’s office that you would like your appointment made as soon as possible. Sometimes those calls are “overlooked” if you remain silent.
My life totally changed when I went to Johns Hopkins, and I hope that your journey to Duke–which is excellent and in my home state–leads you to a much healthier pathway.
My Best,
Robin
-
Well said Robin, I too hope that Mary has the experience you did with Johns Hopkins! 🙂
Thanks for all of your wonderful contributions to the forums.
Cheers,
Charlene.
-
-
Hi, Charlene, Robin, Kate & Mary!
I have not responded lately because I am waiting for my appointment with my doctor at U. Of Ky. He is really the transplant doctor, but I WANTED TO GET MY FOOT IN THE DOOR, JUST IN CASE.
I have put any plans on hold for now. I am doubting everything, I guess. I am going to ask the doc for the special blood test for HP, because My allergy to down feathers was by process of elimination. And I won’t even consider starting a Remodeling project until I find out. If I can’t get the test here, I will probably make an appointment with Duke. We have a condo in Wilmington, so it would be no problem to stay for a few days.
I just feel so helpless and hopeless. It seems as if my O2 levels have dropped, but I have had some type of bug for the past week. I will be getting all the breathing tests and the walk test on the 24th @U.K. so I will know a little more then, hopefully! I also want to see my first and last ct scan and actually look at my scarring.
I will be back in touch afterwards, but keep me included in your posts.
I have learned so much from this site.
Thank you all, and God bless,Lynn
-
Hi Lynn,
Thanks so much for connecting with us, and letting us know how you’re making out in your PF quest. Any idea when your appointment will be with the U of Ky? So glad you are on their radar and I do hope that appointment will come soon. Would U of Ky refer you to Duke? Just hoping you can pick a centre you’re comfortable with and then stick with them, as hospitals tend not to “talk” to one another very well. I hope you’re bug is on the mend now too, that can take so much out of those of us living with IPF!
I hope your appointment goes well on the 24th – please do keep us posted on your progress, and feel free to write anytime.
Warm regards,
Charlene. -
I went for my follow-up appt at Johns Hopkins last week and my Dr was pleased with my improvement since August. The CT scan showed less “grey areas” than the last one. These areas are the ones that were referred to as permanent scarring by my first doctor.
My PFT was a little better, but she said those numbers need improvement. All in all, she said I was on the right track. She was pleased that I followed her advice with an industrial hygienist and followed through with renovations suggested.
Hopefully, with more weight loss and continued exercise, my endurance will improve before I go back in April.
That “second opinion” diagnosis of HP instead of IPF was life-changing for me. Ask your doctor questions when you aren’t clear with what’s going on.
Sending Hugs to All,
Robin
-
Hi Robin,
Thanks for looping back and updating us on how your follow-up appointment at Johns Hopkins went. Really glad to hear the Dr. was pleased with your improvement, and on how diligent you’re being to keep your lungs safe (ie. remodelling and the industrial hygienist). So great to hear about the “less grey areas” on your scan, I will keep my fingers crossed that this continues for you, I know you’re working hard at it and helping so many others along the way! 🙂
Good advice on asking lots of questions for the doctor, I remembered this advice when I was there on Wednesday and I think my doctor was getting a little frustrated but he did explain what I needed him to which I was so appreciative of. Really thankful for all the wonderful people on this forum!
Take care Robin!
Cheers,
Charlene. -
Hello folks,
I know its been about a month since anyone has contributed to this conversation, but I’m very interested in learning more about home testing by an industrial hygienist. My mom was diagnosed with IPF earlier this month. I would like to have my parents home tested, but want to make sure I request the right tests. Robin – could you send me a copy of your report (or could someone else send it to me)? My email address is [email protected].
Thanks so much,
Margaret
-
Hi Margaret,
No problem, I’m glad you re-engaged this discussion as I know it remains of interest to many. Sorry to hear of your Mom’s diagnosis, that is tough and what a great daughter you are at looking into options of getting their home tested. I’ve not yet gone through this process, but it is something I’d like to consider. Therefore, I’m tagging Robin (@shorebird) who might be able to assist you with more information. In the meantime, I am happy to forward on the report from Robin, I’ll do that for you now Margaret. How is your Mom doing overall since her diagnosis?
Take care and feel free to write anytime!
Charlene. -
Hi Margaret,
It looks like Charlene was going to send the info I had sent the others earlier. An industrial hygienist has the proper tools for testing where moisture areas are in your home. Then they write up a report for your building contractor, suggesting areas that need to be exposed to check for mold, etc.
they also take air samples by placing small glass dishes that contain some compound for testing the air. They remain exposed while they check other areas. When they leave they take the dishes, close them tightly and label where they were located. They also test the outside air at your home.
Another very important thing to do is to have your air handling system checked and ductwork cleaned. They can also install something on your unit that cleans your circulating air thru the ionization process like hospitals use.
You could contact a restoration company and ask them who do they recommend for the testing you need before any work is done.
Good luck with connecting with a reputable company. They aren’t widely known yet, but I think our changing environment is going to keep these guys busy, and an industrial hygienist could be the first step toward healthier homes and families.
Tell your mom that I said hello and that I’m confident you’re going to help her breathe easier at night when she closes her eyes to rest.
Sending good vibes,
Robin
-
Hi Robin, @shorebird,
Thank you so much for getting back to @mkpdeals (Margaret) regarding this topic. I did forward her the reports you sent me, including the attachments so hopefully she receives them okay. I’m glad she’s starting this process for her Mom too, undoubtedly it’ll help her breathe a little easier.
Thanks for connecting back and I hope you’re doing well 🙂
Charlene. -
Robin and Charlene – Thank you both so much for the report and information. I’m going with my mom to see her pulmonologist appointment tomorrow, and will ask if they can recommend a reputable industrial hygienist.
All the best,
Margaret
-
Oh that is wonderful news @mkpdeals, I’ll keep my fingers crossed that the appointment goes well. Please let us know if you think of it, and I am so glad the information from Robin was helpful or informative for you. We’re all in this together, so anything we can do to help!
Take care and I hope the appointment goes well.
Charlene.
-
-
Margaret Kresge,
Hope you have an informative appointment with your mom tomorrow. If the pulmonologist doesn’t have any suggestions for an industrial hygienist, or if he doesn’t think it’s really that important, please let me know if you would like some assistance in locating someone.
Robin
-
You’re so wonderful Robin, thank you so much for being such a supportive and helpful member of our forums community! 🙂
Charlene.
-
@shorebird
dear Robin,
as we are from Greece, where there is no such thing as blood test for hypersensitivity pneumonitis, at least as far as I know, can you please please give me more info about your test ? Maybe if we ask specifically they could test it..
I am running through 2 pulmonologists one says IPF the other says HP. I am going crazy.. can you please help me?
-
@sofia-stavridi
Sofia, I am sorry this took me so long to respond. I found the specific things tested for in the hypersensitivity pneumonitis screen test.
>Aspergillus fumigatus
>Micropolyspora faeni
>Pigeon Serum
>T candidus
>T vulgaris
>S viridis
Hopefully, this will help with your blood testing. However, I was negative on all these substances. That’s when I had the air in my home tested for things that can cause HP. The results showed some of the things that were causes of HP. So just because the blood test isn’t positive, it doesn’t rule out the disease.Take care and hope you can get some results that will help you go in the right direction for a healthier you.
Robin
-
@shorebird
Thanks so much Robin – could you send me a copy of your report (or could someone else send it to me)? My email address is [email protected].
thanks in advance.
-
@shorebird
Robin, I was recently diagnosed with PF. I would really appreciate it if you could send me a copy of the testing you had done on your home.Is it simply an indoor air quality testing or do I need to ask for something else? I live on the gulf coast in a very humid area so this has certainly made me wonder if I might be dealing with the HP as well. If you don’t mind sharing the info with me I would also love to know which doctor you saw at Johns Hopkins. I have not yet gone for a second opinion but am considering Johns Hopkins.
I hope all goes well for you and you continue to improve.
Thank you.
Darlene
Log in to reply.