Lung condition that affects other parts of the body.

[sunrise2801]

Does anyone know anything about Alpha-1 antitrypsin deficiency?

[Maricopa]

I’m aatd ZZ

[Katinka46]

There are several members here with A1ATD. I see that you are also a member of the HU fibromyalgia forum. You have not said anything about your symptoms or diagnosis of A1ATD. I am jumping the gun here, but I am very interested in the way autoimmune diseases can throw up symptoms that seem unconnected. And certainly lupus and rheumatoid arthritis can cause lung problems. These diseases are under-researched and often take years to be diagnosed. Can you tell us a little more of your history and symptoms?

[Izb1]

The link below will give you some information that I think you will find helpful.

blf.org.uk/support-for-you/...

[Croydonia]

I am alpha 1 zz. Now 37% lung function and on ambulatory oxygen, in the middle of a pulmonary rehab course, and doing well!

[casey16gatsby]

I'm a ZZ Alpha. Would be happy to answer ??'s.

I received a Double Lung Transplant in Nov. 2020.

All the best,

JCL

[peege in reply to casey16gatsby]

(Wow, congratulations on your receiving your new lungs casey16gatsby!)

[Metal-legs in reply to casey16gatsby]

May I ask what zz alpha means? Just found out my level of alpha-1-antitrypsin is lower than normal. Does this cause bronchiectasis, I also have rheumatoid arthritis? That is amazing to have a double lung transplant, how long is the recovery?

[casey16gatsby in reply to Metal-legs]

A --ZZ Alpha is a person who received a bad genetic allele from both of their parents. That means the protein that is produced in the liver to protect the lungs usually gets 'stuck' in the liver-- so your lungs don't get the protection they need. An MZ Alpha received one bad allele from one parent and one good one from the other parent. They are called 'carriers.' They will produce less of the protein, but much more than a ZZ.

I don't know if it causes bronchiectasis but ZZ Alpha's are very prone to lung disease . I would certainly find a good Pulmonary Dr. if I were you to get more insight.

My recovery from the lung transplant was atypical since I had a small stroke a week after the surgery (which was about 12 hours from beginning to end) . Many people go home after a few weeks but still are closely monitored. I didn't go home for almost 2 months, and even then I had recovery issues. About 4 months after the surgery I was doing much better. Now (10 months after) I'm doing great. Walking over 5 miles a day. Before the transplant I was on oxygen 24/7 and only able to go about 50 feet without resting. Truly amazing

Hope this helps!

JCL

[Metal-legs in reply to casey16gatsby]

You are such an inspiration, congratulations on such a gruelling recovery, to be able to walk 5 miles must feel like a miracle?

Thank you so much for explaining the MZ and ZZ. It sounds like the latter is the worst scenerio? I will be asking my respiratory consultant about this now I understand a bit more. I guess its a further blood test to find out which one I am? If the protein gets stuck in the liver, do you have liver problems as well? My liver results look normal.

Thank you so much for your help.

[casey16gatsby in reply to Metal-legs]

Not a problem.

All the Best !

JCL

[Debs_ALUK Partner British Lung Foundation]

Hi sunrise2801

We have nurses who can talk to you about Alpha-1 antitrypsin deficiency. If you would like to have a chat with one them, give us a call 03000 030 555 Mon- Frid 9-5.

Take care

Debs