New to the LAM world

[lmcgee]

Hello All! I have just recently diagnosed with LAM.  I had never heard of it. For several years I have been treated for asthma, then most recently the drs thought I had COPD even though I was only 43 years old, hadn't smoked long enough (have since quit)  or enough cigarettes to cause it.  I eventually was winded just taking a shower or turning over in the bed would cause a breathless few minutes.  After a recent trip to the ER and a day stay, I finally found a doctor who actually knew what I had. I am supposed to start pulmonary rehabilitation very soon.  This website has been helpful already with knowing that there are others out there that have this weird and scary disease.  I would appreciate any input and/or encouragement on coping with this.  I am in NC and would like to hear from you.
Lisa

[harbauma]

Hi Lisa,

You are where I was back in 2001 when I was diagnosed.  I am not glad that you have LAM but am glad that you have finally been correctly diagnosed. 

Please contact the LAM Foundation.  The staff there is very warm and caring and whoever you talk to will be very helpful.  They can send you information about LAM and if you wish they can put you in contact with others in your area or who are interested in talking to other LAM patients.  You will be glad you called!

Exercise is very important in helping us to get to get the most out of whatever oxygen we have.  I find that if I don't exercise for awhile I feel much more short of breath.  The pulmonary rehab should be helpful.

You can also look around on the website for some information on LAM itself, the rapamycin treatment trial, the NIH study protocol, etc.

I have had LAM since 1982 and still doing fairly well at age 59.  The severity of disease and rate of progress seems to be different for all of us.

I live a relatively normal life, teach Microbiology full time at a community college near Minneapolis/St. Paul, Minnesota and do lots of other stuff.  I am on sabbatical this year and leaving tomorrow for a two week trip to China with my husband so life can and does go on.  I also am into my fourth year on the Board of Directors and realize what a great organization the LAM Foundation is.  Sometimes the LAM is inconvenient but I know that I have been very fortunate.

It takes awhile to get over the shock and scariness.  I recommend learning as much as you can about LAM and your particular situation.  Good knowledge is important and can take away the fear.  Most of us begin to treasure and appreciate our lives and experiences even though it is not what we would have chosen.

Give yourself time, it will get better and you will meet some great people connected with this organization.

Take care and I will be in touch when I return.

Mary Harbaugh

[melis31]

Hii all,

I'm newly diagnosed to LAM aswell, after being diagnosed with TSC ( Tuberous Sclerosis Complex)
 a few months back the docs now realise my lung problems are LAM which TSC can contribute to.

its all been a massive shock, particularly cos im 6 months pregnant!
 have many of you had children with LAM, i know it can accelerate the condition too.

look forward to chatting to you all.

melissa

[harbauma]

Melissa,

Many of us have had children with no apparent acceleration of our LAM, some have had pregnancies with no obvious progression but some complications such as pneumothorax, and others have had progression or progression and complications during or shortly after their pregnancies.

It really seems to be different for every woman with LAM and no good way to predict how an individual will react.

My children were born in 1973 and 1977 and my first symptom (a pneumo) occurred in 1982.  Nothing else happened until 1989 (another pneumo) and 1995 (pneumo).  I had two other pregnancies but had miscarriages.  None of my pregnancies seemed to affect my progression (which has been very slow). 

I hope that you will have good outcomes with your pregnancy and your LAM!

Mary

[melis31]

thanks mary,
I'ts nice to hear you had 2 successful pregnancies, it sounds like they went quite well.
I think I find that one of the scariest things about this disease, is that it so unpredictable!


I'm doing pretty good so far, but i dread it when the baby moves up and squashes my lungs!
I'm still managing to work too but I doubt for much longer as I get quite tired now.

My consultant has talked to me about the pneumothorax and said its quite a high % of me having one but so far so good.

love melissa

[susiep]

Hi Melissa,
My name is Susie.  I also have given birth to two children, both before I found out I have LAM.  Prior to their births, I experienced a lung collapse (in 1989).  My kids were born in 1992, and 1993.  In retrospect, perhaps I was just fortunate, but I did not notice anything in particular related to my lungs during these pregnancies, nor any progression or decline in my health at all.  I did not have another lung collapse until 2002 (I was diagnosed in 2001).  As Mary mentioned, we are all different and have unique experiences so it is difficult to predict what may happen.  You have already progressed 6 months and have only three more to go! I'll wish you all the best with your upcoming parenthood!  Enjoy this special time! 

[harbauma]

Melissa,

Ah-yes.  I remember the squashing of the lungs.  My second son sat on my sciatic nerve for several months-it hasn't been the same since.

For some, their problems with pneumothorax came during the delivery when there is so much pressure being put on the lungs, especially during the pushing-but again, it doesn't happen to all.  It is frustrating for us and for the doctors not to be able to predict what is going to happen in each individual patient.  You may very well have no problems at all related to LAM.

There is a LAM patient who lives fairly close to me who has had two pregnancies while having LAM.  The first one led to her diagnosis, the second was chosen even knowing she had LAM.  She and her children  seem to have done very well.  Her pulmonary function is essentially normal.  She has decided not to have any more children, however.

Take care.

Mary

[marykay]

Hi, this is my first post as I was just diagnosed and am at home recovering form a plerodesis following a pneumothorax on 9/14 and then again on 9/27.  My diagnosis came on 9/21...a schock as well you all know.  My first pnemo occurred in 2000.  Doctors just thought it unusual and said I had a bleb.  I went on to marry in 2001 and have two beautiful children..one born in 2002 and one in 2004.  I am sure I had LAM long before my diagnosis.  My pregnancies were pretty normal and no complications at delivery.  Enjoy this special time.  Looking at my children gives me the strength to face this disease.  I am sure this forum will as well.  Thanks

[melis31]

thanks for all your views.

our son was delivered by c section on the 1st nov at 29 weeks, hes doing really well in the neonatal unit.
The amls on my kidneys burst ( ive never known pain like it)
then a week later i had a pneumothorax on my right lung.
i was in hospital for 4 weeks in the end, im relieved to be home now!

I think my LAM is pretty much the same as before i was pregnant, i cant really say for sure as i was diagnosed in the pregnancy.

it was very tough going but it was well worth it, out little boy is wonderful!

melissa

[SLester]

Congrats to you Melissa and all my best to you and your family!

[rangs987]

I have had LAM since 1982 and still doing fairly well at age 59.  The severity of disease and rate of progress seems to be different for all of us.

I live a relatively normal life, teach Microbiology full time at a community college near Minneapolis/St. Paul, Minnesota and do lots of other stuff.  I am on sabbatical this year and leaving tomorrow for a two week trip to China with my husband so life can and does go on.  I also am into my fourth year on the Board of Directors and realize what a great organization the LAM Foundation is.  Sometimes the LAM is inconvenient but I know that I have been very fortunate.

Buy shamwow

[harbauma]

This is a reply to several postings from rangs987.  I don't know if it is a virus or hacker but there are several postings under your name which I realized are sections from earlier postings that I made (which is why they sounded so familiar abd fut nt orifuke exactkt).  I am just confused as to what is happening here.

Mary