ChristinaH

ChristinaH“Share Your Story” Series

We are continuing our series called “Share Your Story” where we post questions to provide a space for you to share your experiences related to the specific topic. Every patient’s journey with bronchiectasis and/or NTM is different Please consider sharing your experiences with diagnosis and disease management in an effort to help others. Our second set of questions are related to sharing information about your diagnosis with family and friends. Click the link below to chime in! Share-Learn-Live Better!
https://www.bronchiectasisandntminitiative.org/BronchandNTM360social/Community-Discussions/Question-and-Answers/Share-Your-Story-Sharing-with-Family-and-Friends

Share Your Story - Sharing with Family and Friends

Have you talked to your family about your condition(s)? If so, what details did you share? Any advice you can give to others who may be planning to …

5 days ago

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  • laff4evrI was a bronchiectasis baby so my family knew of the details. Now that I'm an adult, my parents have passed and I am single. I have a brother and sister who live near me and are aware I may require assistance from them. I do keep some details private but there is a need to share some information with my siblings. They listen if I tell them something about the condition or how it effects me and what they can do to help. Specifically, they know my history of course. I've also told them what life is like for me currently. I also fill them in on doctors I see, and medications I take. Other details I share when the need arises.

    It may be difficult for those who developed bronchiectasis later in life to share details with family. If that is the category you fall into and want to know what to share... a good starting place is your healthcare directives. (if you've completed them) Your family may play a critical part in your future health. Or you could strike up a conversation with your family member(s) about health conditions and weave aspects of your condition in as the discussion continues. 3 days ago
  • ChristinaHlaff4evr​ I completely agree that conversations about healthcare directives are important for family members to have with each other (and that goes for people with chronic illness or even if you consider yourself completely healthy). I really like the idea of "weaving" in aspects of your condition within a conversation with family members. It alleviates the pressure that some may feel about sharing "the full picture" because it may be easier to share bits and pieces. Great advice! 3 days ago
Ksmiles123

Ksmiles123

Hello! Happy Sunday to all! I am finally getting the Pfizer vaccination #1 tomorrow morning. Looking forward to having the both vaccinations behind me and enjoying more personal freedom. Have you been vaccinated? How did you do on the days following the vaccination?

10 hours ago

Ksmiles123

Ksmiles123

Hello! The bitter foods below can assist your body with inflammation: https://www.healthline.com/nutrition/bitter-foods

1 day ago

Mama mojo

Mama mojoanswered the question Share Your Story - Sharing with Family and Friends

Well it was a shock to me that my lungs were damaged. It actually showed up in a Ct scan of my lungs to in 2017 to clear me from pneumonia, but my PC and I both missed it. But in May 2020 it was confirmed as bronchiectasis after another bout with …

2 days ago

Ksmiles123

Ksmiles123

Hello! Do you take omega 3 supplements? It is good for inflammation. We need to be mindful of preventative measures more than ever . https://www.onhealth.com/content/1/omega_3_foods?ecd=mnl_spc_030221

2 days ago

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  • laff4evrTwo foods I incorporated into my diet over a dozen years ago which are high in Omega 3's are spinach and catfish. I've gotten away from the spinach but still enjoy baked catfish once or twice a week. 1 day ago
  • Ksmiles123Hello! I love spinach salads... have to try catfish again... it has been awhile since I tasted it.:)1 day ago
Mama mojo

Mama mojo

0H HAPPY DAY!!!
had my 1st Moderna shot today and 2nd is scheduled for April 1st.  totally unexpected opportunity.  A private very small pharmacy had leftovers, and I got wind of it and called. I am on at least 3 other lists.  And my hubby get’s his 1st on Saturday through the Virginia Health Dept

2 days ago

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  • ChristinaHThat is great news! I also live in Virginia and my parents (75 and 76) just received their call from the VHD. I am so relieved that things are moving forward with distribution in our state. I have felt all along that the rollout here has been slow. You were very smart to call!2 days ago
  • Ksmiles123Mama mojo,
    Yahoo!  Oh HAPPY DAY to you!!! What a relief!  I cannot wait until i can write the same.  Hopefully, within the next week or two.  The vaccinattion rollout is  moving slowly in the Pittsburgh area.2 days ago
Ksmiles123

Ksmiles123Hello! Below is information on what you can and cannot do once fully vaccinated: https://www.cnbc.com/2021/02/12/dr-kavita-patel-on-you-can-cant-do-after-fully-vaccinated-for-covid.html

Dr. Kavita Patel: Here’s what you can and can’t do after being fully vaccinated for Covid

Some Covid precautions remain necessary even after getting both Covid vaccine shots, former Obama administration policy aide Dr. Kavita Patel told CNBC.

3 days ago

Ksmiles123

Ksmiles123

Hello! What is your first goal or something on your bucket list once we have greater personal freedom? I know that it may take quite some time to get to that level of corona virus safety ... but it is always great to plan ahead.  Positive thoughts are so good for our immune systems.

4 days ago

Ksmiles123

Ksmiles123answered the question time to stop meds?

I assume that you are on the big 3. Is your doctor discontinuing the meds earlier due to culture conversion or due to side effects Most patients do stop cold turkey or one at a time when doctors advise them to do so. Please keep us posted.

5 days ago

Tracer

Tracerasked the question: time to stop meds?

I've been told I will stop meds next month. I haven't talked to ID doctor yet but am curious. Do you stop cold turkey or wean off of them?

5 days ago

ChristinaH

ChristinaHasked the question: Share Your Story - Sharing with Family and Friends

Have you talked to your family about your condition(s)? If so, what details did you share? Any advice you can give to others who may be planning to share the news with their loved ones?

5 days ago

Ksmiles123

Ksmiles123

Hello! The link below, from the CDC, reviews how to best fit your mask : iehttps://www.cdc.gov/coronavirus/2019-ncov/your-health/effective-masks.html

5 days ago

Delia

Deliaanswered the question St. Patrick's Day Recipes/Traditions

Mama Keating’s Irish Soda Bread 3 ½ cups flour 1 cup sugar 1 tsp salt 3tsp. baking powder ¼ tsp. baking soda 1 cup of raisins 2 tbsp. caraway seeds 3 tbsp. vegetable oil 1 egg 1 ½ cups of buttermilk Mix first 5 ingredients together, Add …

5 days ago

Delia

Deliaasked the question: St. Patrick's Day Recipes/Traditions

Hi all, thanks to those of you who joined our Coffee Break yesterday! With St. Patrick's Day in just a few weeks, I am posting some recipes that Ksmiles123 has shared (thank you, Ksmiles!). Do any of you have St. Patrick's Day recipes you're willing to …

5 days ago

Kandy

Kandy

6 days ago

Mama mojo

Mama mojo

A  Ct scan of my sinuses showed a mucous retention cyst in my left Maxillary sinus
I have severe post nasal drip. If I bend down liquid flows out of my nose. I am constantly clearing my throat.  How does that relate to my diagnosis of Bronchiectasis w MAC since it mentions  mucous in that sinus. Is this common? 

6 days ago

Ksmiles123

Ksmiles123

Good morning! Happy March 1st! I hope that you are joining us this afternoon for our coffee hour social at 1:30pm.  Katie

6 days ago

laff4evr

laff4evr

I just found out my Pulmonologist office will be closed Feb 29th, 30th, 31st. 😃😃

6 days ago

KK

KK

Good morning everyone. No not getting the vaccine. If one has an immune or breathing problem , when the vaccine first came out you were advised not to get the shot. Now all things have changed   The vaccine can be put in a fridge all persons are safe to get the vaccine and there are no side effects. A little odd to me. So no i am not getting the vaccine too many unknown answers to questions i have. Looks like spring is on the way  we have been having sunny days here in michigan🌞wonderful to get outside to walk. Have a great day

1 week ago

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  • Ksmiles123KK,
    So glad that you were able to get outside for a walk. It is getting dark around 630pm which is such an uplifting gift!
    I have concerns about the vaccination as well especially since I had hypersensitivity pneumonitis twice; however, I have spoken with my doctors, done a bit of research, etc. and I choose to take the vaccination.  Most say that it is better to take the risk associated with the vaccination over the risk of getting very sick with Covid. We all make our own choices. Stay well, enjoy the spring.1 week ago
  • KandyI was up for mine but wasn't feeling good or breathing well so canceled.  I really don't want it either. 6 days ago
Ksmiles123

Ksmiles123Hello!!An update on the J&J vaccination. How do you feel about getting vaccinated?https://www.medscape.com/viewarticle/946591?src=mkm_covid_update_210226_MSCPEDIT&uac=287092CY&impID=3217029&faf=1

J&J COVID-19 Vaccine Wins Backing of FDA Panel

An FDA panel voted 22 to 0 in favor of an emergency clearance for Janssen/J&J's COVID-19 vaccine, bringing it a step closer to distribution.

1 week ago

Kap🌸

Kap🌸

Hi everyone! Hope you’re doing well today. If you are able, please would you mind describing your side effects of  the 3 antibiotics treatments course through the year. For those who have gone through this. Did you feel well enough to go to work every day? Thanks for the support 🙏😊

1 week ago

Ksmiles123

Ksmiles123

1 week ago

Ksmiles123

Ksmiles123Hello! Below is a listing of vaccinations information, by state:https://www.medpagetoday.com/infectiousdisease/covid19/90791?xid=nl_covidupdate_2021-02-25&eun=g1266965d0r&utm_source=Sailthru&utm_medium=email&utm_campaign=DailyUpdate_022521&utm_term=NL_Gen_Int_Daily_News_Update

COVID-19 Vaccination: A State-by-State List

Starting point to learn who, when, and where

1 week ago

Crafty

Crafty

Hi,  my brother, who is 74, was diagnosed with Bronchiectasisandntm infection last March.  He is on Medicare and he has infusions twice a day at home.  He has just been told that Medicare will not cover the cost as long as he does this at home.  Apparently there are different types of infusion containers and the one that has to be used for his medications is not covered by Medicare at home.  I am just beginning this journey to help find a solution.  Does anyone know of someone with the same issue?  His monthly cost has jumped from a co-pay of $1,900 to over $4,000.  It seems to me that it would cost Medicare far more if my brother had to go to the hospital twice a day instead of administrating it himself at home.  












 The cost jumped from $1900 to over $4,000 per month.  Does anyone else have this problem.  To me, it seems less expensive for him to do his own infusions at home than to go to a hospital twice a day for the rest of his life. 

1 week ago

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  • Ksmiles123Crafty,
    Hello! Welcome to the site. I am so sorry to read of your brother’s current challenges. Unfortunately, there are many bad regulations re: infusions at home vs. the hospital setting that need to be changed.
    Home care companies have been trying to change these regulations for quite some time.
    Have you spoken with the supervisor to see if there are any possible reductions and or patient assistance programs available? 1 week ago
  • ChristinaHIt is very disappointing to hear that your brother can't receive his infusions at home. I would agree with you that the cost of doing it at the hospital would be more to Medicare. The other concern I have is the increased exposure to others who are coming and going from a hospital (twice daily) when he is immunocompromised, not to mention the time spent away from home. Is it possible to reach out to his physician and see if his office could make some calls? I don't know if your brother has purchased a supplemental policy that might assist in covering the extra expenses? I agree with Katie. Poor regulations and increased cost can be detrimental to patients that are just trying to get the treatment that they need. 1 week ago
Franny

Franny

Welcome, Genie

1 week ago

Ksmiles123

Ksmiles123

Hello!  Updated information on wearing masks in the link below : https://www.cdc.gov/coronavirus/2019-ncov/prevent-getting-sick/about-face-coverings.html

1 week ago

Ksmiles123

Ksmiles123Hello! Important update : Taking Tylenol can dampen the immune response, see below article:https://newsnetwork.mayoclinic.org/discussion/common-questions-about-covid-19-vaccinations-answered/

Common questions about COVID-19 vaccinations answered

Getting a COVID-19 vaccine is an important tool, along with wearing a cloth mask, socially distancing and good hand hygiene, [...]

1 week ago

Delia

DeliaEvent Alert!

NTM Info & Research is convening a webinar on Inhaled Hypertonic Saline on Friday, March 5th at 7pm ET.

Learn about inhaled hypertonic saline: how it is used for airway clearance, and the new research looking into the benefits of this adjunct therapy. Guest speaker will be Kevin L. Winthrop, MD, MPH, Professor of Public Health, Infectious Diseases, and Ophthalmology, Oregon Health & Science University.

Click the link below to register:

https://events.r20.constantcontact.com/register/eventReg?oeidk=a07ehlvbkuc0b4f29ef&oseq=&c=&ch=

1 week ago

Medical Advice

It is not our intention to serve as a substitute for medical advice and any content posted should not be used for medical advice, diagnosis or treatment. While we encourage individuals to share their personal experiences with bronchiectasis and NTM, please consult a physician before making changes to your own disease management plan.


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