A Rare Condition

[Para2000]

Heres a mystery question for you all. I have a very rare lung abnormality that was found on CT Scan about 9 or 10 years ago. Found in about 5% of people, but 85% of dolphins. Has anyone ever heard of an Azygous Lobe (sometimes referred to as Fissure)?

[skischool]

Well we have what we call Zebra's on the site with quite rare lung diseases and immune system conditions that affect the lungs but i do believe you are our first dolphin lung,having googled your condition,which is quite fascinating it appears that apart from puzzling a few radiographers it could possibly become a problem during any thoracic procedures and it is good that it is on your medical records,but it should do you no harm and i do hope that is what you have been told by the medical fraternity and that according to my research you have probably had it since birth?

ncbi.nlm.nih.gov/pmc/articl...

[Para2000 in reply to skischool]

Very true. It is indeed it is very rare. In the 5% that have it it is usually found in the Right Lobe. But, in 1% it is in the left (I am in the 1%). Also, the location of my AL means it can't expand and therefore drain adequately in case of infection. This leads to complications in future life. As it is a congenital condition that means frequent chest infections which lead to pulmonary damage and COPD AND OR asthma. In my case it has left me with ACO (Asthma COPD Crossover).

This abnormality only causes me problems in the winter when colds are a frequent problem for we humans. It is basically caused by a blood vessel that should anatomically route around the top of the lungs, but in someone who has an Azygous Lobe it doesn't, it grows inwards (as can be seen in the picture given to me by my consultant from Papworth) forming a fissure (or crack if you like). Mine is almost in the position shown on the right

I have a good diagram given to me by a Consultant from Papworth that illustrates this. But, I don't seem to be able to upload it into this thread. Is there a way to do so???

Since I was a child this has caused me to suffer quite badly and my mother was always dragging me to see the GP as come Winter I would be very wheezy, coughing and spluttering etc. I was diagnosed with Asthma at the age of 3 (but children that young do not have asthma because the airways are developing). Throughout my teenage years and beyond with every winter that came I would become unwell and it didn’t really settle until my 20’s when I enlisted into the RAMC where I became much fitter, but that diagnosis at the age of 3 soon followed me and when the RAMC got my medical records from my GP I was classed as an Illegal Applicant and administratively discharged for not declaring it (difficult when I had no idea it was on them).

About 7 years ago my GP was so pissed off at me always coming in with a chest infection in the winter that he started to question why. But, no test he did showed anything that might explain why, except for a chest x-ray that showed a circular shadow at the top of my left lung. At first it was believed to be what we call a Bullous (common in asthmatics and therefore supporting what the GP had said in 1962. But, my GP didn’t accept that theory (as there would be several all over the lung fields if asthma ) so I was sent for a MRI scan at Addenbrookes and that is when this abnormality was found at the top of my left lung compressed under the collar bone. Normally this fissure expands and contracts with the rest of the lung during breathing, but in my case, as it can't as it is trapped.

I caught a cold just after Christmas last year that led to a chest infection for which I was given antibiotics that didn’t work, as the Nurse Practitioner didn’t prescribe the correct drugs as advised by Papworth and Addenbrookes to save money so it became quite bad and within 2 weeks I was much worse and given 3 courses of antibiotics by the nurse practitioners at St.Georges. This coincided now with the start of the Covid19 pandemic and due to that, the surgery decided to assess all patients over the phone, which meant an eyes on assessment cant be done. So, the infection I had dragged on and on making me wheeze badly and cough like hell as the mucus it produces is thick like wallpaper paste and won't come up.

This Covid epidemic means I am isolated most of the time; I only speak to my girlfriend on the phone and I haven't seen my any of my family in months. Although, since I cracked up with PTSD (after 25 years as a RRV Paramedic) I do find myself becoming more and more reclusive.

[skischool in reply to Para2000]

It is unfortunate that within this rare breed of people you are even rarer in suffering complications,the article i researched seemd to suggest that a surgical intervention was rarely required but given the complications that it is affording you i would have thought they could perhaps do something similar to segmental lung volume reduction surgery and put you in a much better place.

Alas covid 19 has made many of us reclusive purely for survival reasons but recent developments with vaccine research suggest there may be a possible escape from this situation in the New year so try to focus on that possibility in order to maintain your morale for the time being.

Best wishes for your future Zebra +

[Para2000 in reply to skischool]

Mine is on top of the left lung, virtually under the collar bone. But, at least I understand why I have always been plagued with infections since 3 years of age.

[madonbrew in reply to Para2000]

Goodness me dolphin...that’s a lot to deal with! Really hope this infection can get sorted soon for you! I don’t know if they are safe for your lung condition, but I have been having physio for severe asthma and they’ve taught me ‘huffing’ exercises to help get the mucus up. It is actually starting to help.

Take care!

[madonbrew]

As Skis said, we’ve got zebras 🦓 and unicorns 🦄, but we like to welcome new additions, so Dolphin 🐬, welcome!

I really have no idea at all this condition, but just wanted to say Hello 👋

Dee

[watergazer]

Hi 🙋‍♀️ and welcome I have no idea about your condition It sounds fascinating. Maybe you were a dolphin in a previous life X

[HouseBunny64 in reply to watergazer]

LMAO

[illawarra]

Hi and welcome. I do not know anything about the disease but I will check it out. x

[Izb1]

Hi Para2000 and welcome to the site. I think you must be the first on here with this condition. I have never heard of this so like Skis looked it up. Lets hope that it never causes you any problems x

[Alberta56]

Hi welcome. I hope you never feel the urge to go down to the sea and jump in. x

[peege]

How amazing that you got a diagnosis Para2000. Its hard enough to get one for a run of the mill lung diseases! Anyway, welcome to this great forum. Peege

[Kimlu]

Wow, what a fascinating story, always finding out about new things on this site. I'm still waiting final diagnosis, all I have is ILD at the moment so I'm not a dolphing or a zebra - maybe a boring old fart but that's another story lol. Keep safe

[madonbrew in reply to Kimlu]

We like boring old farts too!

[HouseBunny64 in reply to Kimlu]

Do you know why the elderly ( over 50 lol) are called old-farts??

[Alberta56]

I hope that now you have a proper diagnosis the medics will be able to improve your quality of life. Skis is talking sense. Persist in asking for what you need.

[HungryHufflepuff]

Hello and welcome dolphin 🐬