Kidney
Lung Infection Information Needed Please
Hi,
I'm a 28 year post renal transplant recipient recently diagnosed with a lung infection called MYCOBACTERIUM ABSCESSUS COMPLEX.
MY Pulmonologist said its extremely hard to treat and requires IV infusions with treatment taking12-18 months!! She said the medications can interfere with immunosuppresants therefore will refer me to Stands transplant center Infectious Disease. It is not contagious!
History, my husband and I were in a car accident on December 23, 2021. We suffered injuries (back, neck) and I had a very bad chest contusion from the impact and seat belt. Shortly after the accident I developed a non productive cough that persist for months. Meds didn't help and I was referred to a Pulmonologist who did a Bronchoscooy.
I actually had 2 bacteria's The initial one was treated with Augmentin 10 days. It helped but cough is still there. Went for follow up yesterday and was given results of 2nd bacteria. It took several weeks to finalize.
It's a nightmare. I'm shocked all stemmed from a car accident that resulted in a chest contusion. The MD said a lung confusion more likely that caused this!
I am very nervous about this. I have done so well with my transplant, creatinine great "thank God"! I don't want anything to effect that now.
I was told I may need a portal or pic line due to the infusions which I've never had before either!
I am so SCARED and am hoping there's a recipient out there that has dealt with this before and can offer valuable information.
Much appreciated!
Take care 🙏
1 - 6 of 6 Replies
Transplant Patient
I’ve never dealt with that type of lung infection but I wanted to say I see you.
even if it’s not contagious, I’ve been referred to infectious disease before just because they usually have more experience treating infections similar to this one. Don’t let the name scare you! As far as pics or ports go, I actually prefer getting a pic to a regular IV. Once it’s in, it’s so handy. I freaked out with my first one, but now if I know I’ll have an extended stay I’ll just ask for one.
I’m so sorry you’re dealing with this, and that it feels like one thing on top of another. I know the feeling. Please let us know if there is anyway we can support you on this journey
Thank you so much for your reply and kind words.
I am so nervous though I'm trying to stay positive.
The pulmonologist said it may require 3 infusions a week along with oral.meds. Bronchoscopies in between to see how's its going.
She said it could take 12-18 months to treat. I have never heard of such. She said I may be able to infuse myself at home?
I'm waiting to hear back from my transplant provider.
I am so depressed, scared and in disbelief!
Again "thank you" for reaching out. It means a lot.
Take care and God Bless 🙏
Hi @stwbear I wanted to check in to see how you're doing. I hope you are healing well.
Hey there. We don’t have any experience with a lung infection but I wanted to acknowledge your fear and worry as real. I’m so sorry you are going through it all.
We have had experience with PICC lines all too often. I think they are great so long as they are being used multiple times daily. Easier blood draws and at least for us we then had the ability to take the meds (through a home health care company) home and administer the drugs at home. It makes such a difference to not be stuck in the hospital day in and day out.
I'm hoping for you once a plan is made you and started that it gets less worrisome.
Hi @stwbear , I'm sorry to hear about your infection.
Before my bi-lat lung transplant, I also had MAC, of the non-TB variety. I underwent 18-24 months of daily IV infusions, which required a chest port (that I still have). Eventually the treatment worked so I was able to stop the course of therapy and it did not impact my ability to receive and undergo the transplant. I'm 12 years post transplant now with no issues.
The obstacles and issues with treatment aren't really with the treatment itself per se, but more so your time management; picc or port line maintenance; and harmonization between your health care team, home health care provider and insurance.
I would 100% recommend a port given the length of treatment. The first few days will be uncomfortable but in the long run you won't even recognize or notice it.
Good luck with your treatment and I hope you feel better soon.
Transplant Patient
@stwbear, I wanted to check in and see how you're doing? The mental game is just as tricky as the physical diagnoses and treatment. Keep us posted!