mz what really is the risk?

[tonya]

I am confused! I read and hear mz's are and are not at a higher risk.
What is it really?The alpha 1 phenotpyes web site says not at a higher risk for emphyema but what about cronic bronchitis? My three month daughter is a mz (although for a better diagnoses I need to have the dna tissue bank confirm this) who has been om an inhibulizer(sp?) on snd off and has a cronic cough and difficult time breathing. Her doctors act like I am crazy, overly concerned. Anybody know of a good pediatric doctor with alpha-1 experience in the Atlanta area. I want to keep up on my daughter health.

[jenchar]

Thanks for posting, Tonya. I emailed you offline.



Jen, mom of:
Grace, Alpha-1 ZZ (4/02)
Meghan, Alpha-1 ZZ (5/04)
Wisconsin
www.caringbridge.org/wi/alphagirls

[aimee]

I thought your message was interesting because my son is MZ, and he also had breathing problems and had RSV at 2 months old. We had to give him breathing treatments about 5-7 times a day for a week or so. I know this is a somewhat common childhood sickness, but I was surprised that he caught it considering he was never around anyone other than our family at that age. He is five months old now. My daughter is SZ--that is who we are really watching for Alpha 1 related health issues, but I am still not sure what, if anything, to watch for in my son.
Aimee

[Smokymtnqueen]

<font face="Arial"></font id="Arial"><font color="black"></font id="black">I'm a newly diagnosed MZ and am being referred to the gastroentologist. I appreciate this board so much because a lot of my anxietys have been waylaid by your wonderful informative comments. I have no symptoms at this time and am 55 years old. I had a slightly elevated liver function test that prompted my detail oriented internist to order further testing.

Brenda

[jenchar]

Hi Brenda,

Thanks for posting on the bulletin boards. I wanted to reassure you that people at any time in their lives can have slightly abnormal liver function tests. For example, any number of viruses can make LFTs jump a bit.

I'm an MZ too. A couple of times, I've had elevated LFTs, too. Most of the time they are normal. I'm glad they referred you to a gastroenterologist because he/she can really tell you what is going on.

Having an MZ phenotype means that your liver still misfolds the Alpha-1 protein incorrectly, but it doesn't do it as often as say someone who has a ZZ phenotype, like my kids.

Thanks so much for the positive comments on the bulletin boards. We're relatively new, but still so happy to help when we can.

Thanks!

Jen, mom of:
Grace, Alpha-1 ZZ (4/02)
Meghan, Alpha-1 ZZ (5/04)
Wisconsin
www.caringbridge.org/wi/alphagirls

[Smokymtnqueen]

I am hoping to get a response to my situation. I am an MZ and was diagnosed due to slightly elevated liver function test. My ALT was a little on the high side. Additional tests revealed my smooth muscle antibody titer was greater than 1:80 and I am having a biopsy and they are looking for autoimmune hepatatis. Would I be right in thinking that the Alpha 1 deficiency itself could be the cause of the elevated titer? Are there other things besides autoimmune heptatitis that can affect the smooth muscle. Also, is it an accurate test? I will be frank with you I am absolutely terrified and afraid of the treatment (cortisone) more than the disease or the biopsy. I am praying for fatty liver (could the high titer be evidence of this?)Thanks in advance for your response.

Brenda

[jenchar]

Hello Brenda! Thanks for your post.

Well, from my lay person's knowledge, I don't believe that being a carrier of Alpha-1 (MZ) would affect your smooth muscle titer results. I have an acquaintance that was just tested for Autoimmune Hep because his ANA came back very high. It turned out he has fatty liver disease (diagnosed from biopsy), which can be reversed with good diet. However, it seems that he now has lupus of some kind since his ANA is so high. He is now off to see a Rhuematologist.

Anyway, my overall point here is that I have heard that Alphas have a tendency to have autoimmune disorders, but I haven't seen any research that backs this up, yet. Sometimes, people just get "stuck" with several "bad" genes. For example, I carry the Alpha-1 gene but I also have been diagnosed with early onset chronic hypertension...another bad gene. Isn't life unexpected sometimes? No really, please don't get too worried about this. Your GI will figure it out for you. I know it can be scary, but hang in there. Just keep your perspective and remember that there are people who are facing worse things in their lives. It helps me to remember that at least. Take my advice or leave my advice, but thanks for posting.

Hugs to you,

Jen, mom of:
Grace, Alpha-1 ZZ (4/02)
Meghan, Alpha-1 ZZ (5/04)
Wisconsin
www.caringbridge.org/wi/alphagirls

[Smokymtnqueen]

Jen - your words are like medicene to me. Thanks for your kindness to a stranger. I will hang onto those thoughts. Brenda

Brenda

[jenchar]

Brenda,

That is what this bulletin board is here for. Alphas helping Alphas.

I hope you get the answers you need.

Hugs,
Jen

Jen, mom of:
Grace, Alpha-1 ZZ (4/02)
Meghan, Alpha-1 ZZ (5/04)
Wisconsin
www.caringbridge.org/wi/alphagirls

[Smokymtnqueen]

I got some good news today from my liver biopsy. It shows I have a "fatty liver" and not autoimmune hepatitis. Yeah!!! Now I will be into the exercise and "Mediterannean type diet". This has been such a wake up call for me. Thanks to this forum and the opportunity to use it as a sounding board.

Brenda

[jenchar]

Oh Brenda! I'm so happy you shared that with all of us. It isn't fun to have fatty liver disease but it can be reversed if caught in time. I'm so pleased that you can work to fix it. Isn't it great that the liver is a regenerative organ? It is the only one like it!

Thanks again for sharing.



Jen, mom of:
Grace, Alpha-1 ZZ (4/02)
Meghan, Alpha-1 ZZ (5/04)
Wisconsin
www.caringbridge.org/wi/alphagirls

[anjala75]

Hi Everyone. I have lurked on the site for a while now. I had a low antrip levels and high liver readings. I had my gallbladder removed the end of April which kind of began this journey. I quit smoking before my surgery as well. I have been seeing a GI as well. I just got my phenotype results back that my doc read to me as having one copy of the Z allele in the Alpha 1 P1 gene. Suggesting that I am a carrier. Yet I have not had my breathing improve much since I quit smoking and my last liver test was good after three bad ones in a row. I am going for PF tests and if they are low my doc said I may need a lung biopsy. I also had my antrip blood level checked again today. I am confused as to if my phenotype suggests I am a carrier...why do I have symptoms and a deficiency. My last reading was 74.....not super low but low. My daughter has to have her gallbladder removed and is almost 15. She will need to be tested for Alpha 1 as well. She had bad jaundice as a baby but they said it was to to ABO complex but now I wonder. I am new to all this other than my lurking when I found out I had a deficiency and my liver readings were high. I appreciate any info or advice. I guess without the lung biopsy....I won't know if its alpha 1 that is causing my shortness of breath and breathing issues....BTW my chest xray in March was Normal.

[tbwlsc]

Hello! I am new to the board, and was hoping to get a little more information. I just found out that I am a MZ carrier but that currently it is passive. My grandmother has MZ and hers is active, and my mother has MZ and hers is passive. I have been looking online and see the biggest thing that keeps showing up is that I have a higher risk of lung/liver disease. I was curious as to what else I need to be concerned with, and what my next steps should be. When I look online there is so much spread out that its hard to get a clear picture. I am 24 and a school teahcer, and what to make sure that I am doing everything possible that I can. My grandmother went years without knowing that her Alpha-1 was active, and I want to make sure the same doesn't happen to my generation. Thank you all for your help and information!

[lfun]

<font face="Arial"></font id="Arial"><font color="black"></font id="black">I'm a newly diagnosed MZ and am being referred to the gastroentologist. I appreciate this board so much because a lot of my anxietys have been waylaid by your wonderful informative comments. I have no symptoms at this time and am 55 years old. I had a slightly elevated liver function test that prompted my detail oriented internist to order further testing.

Brenda

Hi Brenda,

Which enzyme was elevated in your liver function test? Or perhaps I'm not understanding what you meant. Was it ALT?

[dcg62]

Hi Brenda,
My sister had a liver transplant in the early 80's she is still doing OK, I think at your age you might be in good shape don't worry to much.My sis is a ZZ and I'm a ZZ I have the lung problems from my aat.In my case I'm 48 and I can't breathe very good,It keeps from doing alot of stuff I loved to do.I hpoe to do better this spring.

DAVID(ATT commerce ga.)