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Broncheactasis and pregnancy

Posted by anastasiak @anastasiak, Sep 1 6:33am

Hello everyone. I am 40, diagnosed with Bx in June although I’ve had it on CT scan in 2021 but it was missed by my pulmonologist at that time, so I probably have done a lot of damage to my lungs since then (was doing renovations of the house sometimes without a mask, and of course wasn’t taking any precautions or airway clearance). Based on my imaging from 2021, it was only in 1 spot - right lower lobe, and on my abdominal CT scan in May of this year it was showing the same area but sounded like it increased in size. I changed pulmonologist recently, did tons of blood tests which all came back normal, was supposed to do lung CT scan past Friday but turned out to be pregnant, so cancelled that. I am doing sputum induction for AFB next week. I also finished 10 days of levoquin for pseudomonas this month (prior to knowing that I am pregnant), and sent sputum for a retest but the results are not in yet. I am currently doing 7% nebulizing 2x day, use Aerobika but not consistently (I didn’t notice it helps me to bring up mucus), and take precautions around shower, steams, soil. I was on vacation in the Bahamas though within the last 2 weeks as well, so I had lessened precautions around drinking water (although primarily was using lifestraw). I was swimming in outdoor pool a bit, and in the ocean - all before I knew about my pregnancy. I used to have a lot of yellow-greyish mucus prior to levoquin, then was unable to get anything during and after levoquin for a bit, but 2 weeks after I finished the course I can get the sputum out and it is mostly cloudy white with a tiny spot of red which is weird because it is usually only in the 1st cough, the rest of it is just cloudy white.
My next appointment with my pulmonologist is the following Monday, and my appointment with OBGYN is Thursday (before my pulmo). This is a new OBGYN as my current one doesn’t do delivery anymore. I am worried about my condition during pregnancy, especially since there are so many unknowns - do I still have pseudomonas, do I have NTM, what is the condition of my lungs, will OBGYN take me with my condition… all that is very scary, so I am looking for your experiences with this. I know it is a rare condition, and mostly older people get it, so probably not a lot of cases of pregnancies with BX.
I was trying to get an appointment with OBGYN at NYU, same place as my pulmo, but the wait time there is ridiculous.

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kdiago1564 | @kdiago1564 | Sep 1 7:37am

Hi there,

First of all, congratulations! Super exciting news but obviously daunting and stressful given the bronchiectasis. All of your concerns are completely warranted and understandable! I would wonder all of the same things and have the same concerns. (I'm 46 now and have a 2.5 year old but wasn't diagnosed until after she was born in 2022).

I see doctor Adrizzo-Harris at NYU. I would call her office and explain your situation. She only sees patients with bronchiectasis so perhaps she'll take you on. (When she took me I was also unable to book an appointment with her online so I called her office directly and during my visit I asked her about this and she said she's only taking patients with bronchiectasis). She's fantastic and would definitely help to have all your doctors and records under one roof.

I think the good thing is you've already been on antibiotics and hopefully will be clear and fingers crossed on your latest sputum culture. Hopefully your bronchiectasis is stable even if it's slightly worse since the CT scan in May. Do you have any other complicating factors? I think the best thing you can do is continue taking precautions like mask wearing, get your COVID and flu vaccinations, continue drinking filtered water and really try to do the airway clearance using the nebulizer and Aerobika twice a day to help ward off infection. I know it's such a pain in the neck with everything else going on (work/pregnancy/life!) but at least it will give you peace of mind knowing you're doing all you can.

Do you have a baby bottle sterilizer for the nebulizer and Aerobika parts? Anything you can do to try and cut steps out of the routine so there aren't roadblocks to doing airway clearance can help (I have found that to be helpful).

I guess the big questions for your OBGYN are what happens if you do get an infection and are certain antibiotics safe to take during pregnancy. I think you're probably already categorized as 'high-risk' given your age and they're used to dealing with so many complicated situations and can help guide you along with input from the pulmonologist.

Easy to say but try not to worry too much. Practice visualizing your lungs expanding as you breathe and think of how healthy and strong they are. Take care of yourself and be excited about this baby!

REPLY
2 replies
anastasiak | @anastasiak | Sep 1 8:28am
In reply to @kdiago1564 "Hi there, First of all, congratulations! Super exciting news but obviously daunting and stressful given the..." + (show)
@kdiago1564

Hi there,

First of all, congratulations! Super exciting news but obviously daunting and stressful given the bronchiectasis. All of your concerns are completely warranted and understandable! I would wonder all of the same things and have the same concerns. (I'm 46 now and have a 2.5 year old but wasn't diagnosed until after she was born in 2022).

I see doctor Adrizzo-Harris at NYU. I would call her office and explain your situation. She only sees patients with bronchiectasis so perhaps she'll take you on. (When she took me I was also unable to book an appointment with her online so I called her office directly and during my visit I asked her about this and she said she's only taking patients with bronchiectasis). She's fantastic and would definitely help to have all your doctors and records under one roof.

I think the good thing is you've already been on antibiotics and hopefully will be clear and fingers crossed on your latest sputum culture. Hopefully your bronchiectasis is stable even if it's slightly worse since the CT scan in May. Do you have any other complicating factors? I think the best thing you can do is continue taking precautions like mask wearing, get your COVID and flu vaccinations, continue drinking filtered water and really try to do the airway clearance using the nebulizer and Aerobika twice a day to help ward off infection. I know it's such a pain in the neck with everything else going on (work/pregnancy/life!) but at least it will give you peace of mind knowing you're doing all you can.

Do you have a baby bottle sterilizer for the nebulizer and Aerobika parts? Anything you can do to try and cut steps out of the routine so there aren't roadblocks to doing airway clearance can help (I have found that to be helpful).

I guess the big questions for your OBGYN are what happens if you do get an infection and are certain antibiotics safe to take during pregnancy. I think you're probably already categorized as 'high-risk' given your age and they're used to dealing with so many complicated situations and can help guide you along with input from the pulmonologist.

Easy to say but try not to worry too much. Practice visualizing your lungs expanding as you breathe and think of how healthy and strong they are. Take care of yourself and be excited about this baby!

Jump to this post

Thank you for the encouragement. I called Dr Addrizzio Harris office, the receptionist said that the Dr will review my records (from my 1st dr who is also at NYU) and will call me back if Dr Addrizzio decides to take me or whether she will refer me to another doctor. That was about a month ago and I didn’t hear back from them. I am now a patient of Dr Kamelhar who participates in BX events along with Dr Addrizzio, so I think he is a good doctor for this condition as well. The problem with May scan is that it was an abdominal scan, so only part of the lungs was captured. My last lung CT scan was done in January of 2021 and I was supposed to redo it last Friday. But what can you do 🤷‍♀️. I lived my last 20 years of my life thinking that I was infertile, and here you go. I do have a 15 year old who I conceived with the help of the pills, but I was young back then. We did want to conceive, but given my age and fertility struggles I am very surprised that I am pregnant.

REPLY
1 reply
anastasiak | @anastasiak | Sep 1 8:29am
In reply to @kdiago1564 "Hi there, First of all, congratulations! Super exciting news but obviously daunting and stressful given the..." + (show)
@kdiago1564

Hi there,

First of all, congratulations! Super exciting news but obviously daunting and stressful given the bronchiectasis. All of your concerns are completely warranted and understandable! I would wonder all of the same things and have the same concerns. (I'm 46 now and have a 2.5 year old but wasn't diagnosed until after she was born in 2022).

I see doctor Adrizzo-Harris at NYU. I would call her office and explain your situation. She only sees patients with bronchiectasis so perhaps she'll take you on. (When she took me I was also unable to book an appointment with her online so I called her office directly and during my visit I asked her about this and she said she's only taking patients with bronchiectasis). She's fantastic and would definitely help to have all your doctors and records under one roof.

I think the good thing is you've already been on antibiotics and hopefully will be clear and fingers crossed on your latest sputum culture. Hopefully your bronchiectasis is stable even if it's slightly worse since the CT scan in May. Do you have any other complicating factors? I think the best thing you can do is continue taking precautions like mask wearing, get your COVID and flu vaccinations, continue drinking filtered water and really try to do the airway clearance using the nebulizer and Aerobika twice a day to help ward off infection. I know it's such a pain in the neck with everything else going on (work/pregnancy/life!) but at least it will give you peace of mind knowing you're doing all you can.

Do you have a baby bottle sterilizer for the nebulizer and Aerobika parts? Anything you can do to try and cut steps out of the routine so there aren't roadblocks to doing airway clearance can help (I have found that to be helpful).

I guess the big questions for your OBGYN are what happens if you do get an infection and are certain antibiotics safe to take during pregnancy. I think you're probably already categorized as 'high-risk' given your age and they're used to dealing with so many complicated situations and can help guide you along with input from the pulmonologist.

Easy to say but try not to worry too much. Practice visualizing your lungs expanding as you breathe and think of how healthy and strong they are. Take care of yourself and be excited about this baby!

Jump to this post

Would you be able to share your OBGYN? It seems like you are in NYC as well?

REPLY
2 replies
kdiago1564 | @kdiago1564 | Sep 1 11:39am
In reply to @anastasiak "Would you be able to share your OBGYN? It seems like you are in NYC as..." + (show)
@anastasiak

Would you be able to share your OBGYN? It seems like you are in NYC as well?

Jump to this post

Sure, my doctor was Dr. Robin Kalish at NYP / Weill Cornell
https://weillcornell.org/rbkalish
She was excellent! I had various complications at different points and I felt that she was a calming presence with great judgement—very balanced risk assessment and she was never an alarmist.

REPLY
1 reply
Mentor
Sue, Volunteer Mentor | @sueinmn | Sep 1 12:27pm
In reply to @anastasiak "Thank you for the encouragement. I called Dr Addrizzio Harris office, the receptionist said that the..." + (show)
@anastasiak

Thank you for the encouragement. I called Dr Addrizzio Harris office, the receptionist said that the Dr will review my records (from my 1st dr who is also at NYU) and will call me back if Dr Addrizzio decides to take me or whether she will refer me to another doctor. That was about a month ago and I didn’t hear back from them. I am now a patient of Dr Kamelhar who participates in BX events along with Dr Addrizzio, so I think he is a good doctor for this condition as well. The problem with May scan is that it was an abdominal scan, so only part of the lungs was captured. My last lung CT scan was done in January of 2021 and I was supposed to redo it last Friday. But what can you do 🤷‍♀️. I lived my last 20 years of my life thinking that I was infertile, and here you go. I do have a 15 year old who I conceived with the help of the pills, but I was young back then. We did want to conceive, but given my age and fertility struggles I am very surprised that I am pregnant.

Jump to this post

Wow, what an unexpected blessing! I hope you can find an OB/Gyn who handles complex pregnancies. If your NTM is mild, it is quite possible that you can delay any antibiotic treatment until after birth - if you get diligent about airway clearance.
Dr Pamela McShane, Bronchiectasis & NTM expert at UT-Tyler has a great video explaining why it is important even if you don't see a lot of mucus:


Hoping all goes well for you!

REPLY
anastasiak | @anastasiak | Sep 1 1:40pm
In reply to @kdiago1564 "Sure, my doctor was Dr. Robin Kalish at NYP / Weill Cornell https://weillcornell.org/rbkalish She was excellent!..." + (show)
@kdiago1564

Sure, my doctor was Dr. Robin Kalish at NYP / Weill Cornell
https://weillcornell.org/rbkalish
She was excellent! I had various complications at different points and I felt that she was a calming presence with great judgement—very balanced risk assessment and she was never an alarmist.

Jump to this post

Thank you so much! I hope she doesn’t have long wait time, I will call on Tuesday.

REPLY
mariegrace | @mariegrace | Sep 1 3:15pm
In reply to @anastasiak "Would you be able to share your OBGYN? It seems like you are in NYC as..." + (show)
@anastasiak

Would you be able to share your OBGYN? It seems like you are in NYC as well?

Jump to this post

Dr Miriam Green is an excellent ObGYN at NYU

REPLY
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