Is there anyone as young as me here?

[cscharri]

I am newly diagnosed with LAM. I am waiting for my paperwork and referrals to go through here in Oregon to have a lung biopsy. I am 29 years old. I have had 2 pneumos (2002, 2003), blebs, pleurisy and was misdiagnosed with emphysema and asthma in July of this year. My primary Dr. referred me to a pulmonologist and she diagnosed me on Oct. 30. I am very afraid right now. I do not know what to expect. My Dr.'s are even suprised with how young I am. I am afraid of it getting harder to breath than it is right now. If anyone can give me any ideas on how fast this can progress or how long it can be stabilized I would appreciate any tips, info, advice, etc... 

Cammelia

[SLester]

Sorry, I'm not as young as you, I was diagnosed when I was 40.  From what I understand, the disease can progress quickly, or it can stay stable like mine has.

Have your PFT's gotten worse?  Any other information?  And may I ask why you are getting the lung biopsy -- is it really necessary?

I'd suggest that you contact the LAM Foundation for more information.

And try not to worry, there is so much progress being done, we'll hopefully have a treatment before long.  Which reminds me, you may also want to see if you qualify for the MILES trial (also information on the LAM Foundation site).

[harbauma]

Cammelia,

I am quite a bit older than you (I will be 60 in a couple of weeks) but there are a number of women who are diagnosed in their 20s.  The average age of diagnosis now is somewhere around 30.  I have had symptoms since 1982 but was not diagnosed until 2001.  I have lots of the blebs (cysts), pneumothorax, and have had pleurodesis on both lungs.  So being diagnosed at your age is not all that surprising and does not mean that your disease will be worse than if one is diagnosed later.  I continue to function at the mild/moderate level after many years and am not yet on oxygen.  I have been told that it is unlikely I will ever require a lung transplant.

LAM can often (but not always) be diagnosed without a lung biopsy.  Sometimes it can be fairly easily diagnosed through a high resolution CT scan, especially if there is also an AML (benign kidney tumor) present as well.  Those can be seen by a CT as well.
Occasionally, a biopsy is needed to confirm the diagnosis.  There are different ways to do this-some methods are less invasive than others but the less invasive method may not pick up the LAM cells. 

It is a very scary thing when first diagnosed because there is so much we don't know.  There is no way to predict how one will fare over the long term, especially when first diagnosed.  One can get a better sense after being followed for a few years.  You need to have a thorough evaluation to better understand your particular situation.  You should have a pulmonary function test (PFT) which will give a better idea of how you are doing at this point in time. 

If you are currently on birth control pills you should switch to another non-hormonal method as soon as possible.  It is thought that estrogen might play a role in the progression of the disease.  However, it is not recommended any longer that one have their ovaries removed or even take progesterone (to counteract the effects of estrogen).  There is no good evidence to suggest that it plays a significant role in slowing down progression.

As previously mentioned, if you have not done so yet, you should contact The LAM Foundation.  They will send you a great deal of information over the course of about 2-3 mailings.  They could also put you in touch with other LAM patients in your area and perhaps some Drs. who have treated other LAM patients. 

Also, you can take a look at the information found on The LAM Foundation website.  They have information under the patient section and your doctors can benefit from the information under the medical providers section. 

The MILES trial (a drug treatment trial) might be a possibility as well, depending upon how far your disease has progressed.  The criteria are listed on the website under the link to the MILES trial.  I believe there is a site that is either now open or will soon open in Oregon.

Exercise is also recommended for us.  It enables us to better utilize whatever oxygen we have available.  When I was participating in the NIH clinical study, they told me that on my CT scan my lungs look as though they have severe disease but I function at the mild level.  When I asked why, their response was "exercise".  They said to think of it as a prescription. 

I am a firm believer that knowledge is power.  The more you learn about LAM and your particular situation will help you to make the best choices.  You become an active participant in your care and lose much of the helpless feeling and fear that you have when first diagnosed.

You might want to consider attending the LAMposium that will be held in Cincinnati in the first part of April.  The Foundation will send you information about this as well.  If money to attend might be an issue, there is some financial aid available for at least some of your expenses.  Those who are newly diagnosed will be given preference.

Ask whatever questions you have either here or by e-mailing me privately.

Take care-it will get easier.

Mary

[melis31]

Im not far off your age, Im 32, I was diagnosed last year.
Its hard to say how the disease will progress its different for everyone.
I was pregnant when i found it which unfortunatley lost me 15% more of my lung function.

I felt very scared (and still do) of this disease as its so rare and the specialists are limited in their knowledge.
remember you are not alone, there are always people here who know what your going through.

melissa (uk)

[ms.melissa]

Hi there.

I am 31 years old and haven't been diagnosed with LAM.  I saw a commercial on TV last night and it got me thinking about my situation.  In NOV 2006 I started to feel this pain in my chest.  I could hear a popping sound, then it would be followed by a sharp pain, almost like I was being stabbed.  About 3 months later I started to feel this gurgling sound in my chest.  This is all happening in my right lung. 
I finally went to the Dr. (walk in clinic) they did a chest X-ray and said that it looked like I had pneumonia.  I was treated with antibiotics for 10 days.  On my tenth day I went back because I didn't feel any better.  The Dr. then sent me to get a CT Scan.  They called me back the same day and told me that they made an appointment for me to see a specialist because I had a partial collapsed lung and plural thickening. 
My appointment wasn't until 3 months later.  I waited and waited for him to just tell me that "he didn't know" what it was and that I probably had walking pneumonia back in November when I started to feel the first pain and that it would go away on its own.  That was in August 2007.  My next appointment is coming up next month. 
I guess what I want to know is if my story sounds familiar to any of you or if I'm just looking for something that isn't there.
My lung still feels the same.  I can no longer feel the gurgling sound but the popping and stabbing pain is still there.  I have shortness of breath when I do anything active and I'm really tired all the time. 
If anyone can give me some feed back I would really appreciate it. 
Thanks so much,
Melissa

[SLester]

Wow Melissa, I can't believe you've had to wait this long.

Ask for a high resolution CT scan.  That should show if you have cysts.

Can I relate?  You bet.  Not to the lack of medical attention, I got that immediately and have had awesome docs, but I went to the ER yet again for chest pain last night.

I have almost constant chest pain with atelectasis (the bottoms of my lungs are collapsing probably because I breathe shallow due to the pain I have).  Twice now including last night, they say it does look like pneumonia, but I have no pneumonia symptoms and that has been ruled out.

Last time I had the bad chest pain, I was put on a Medrol Dose pack (steroid) which reduced the pain and worked much better than antibiotics. 

I guess a lot of people have seen those PSA's lately which is great.  I'd suggest getting some information from the LAM Foundation's web site to bring with you to the doc, unfortunately they don't all know about this disease.   In fact, the ER doc last night had no idea, but I was able to tell him the concerns and issues, so he knew what tests to have done and what to look for.  Another issue I had last year was a blood clot (DVT) in one of my legs which probably caused a bunch of little pulmonary emboli which were causing me pain. 

I'm not sure what to say other than push for what you believe is right.  If you don't feel right, keep pushing.  I was brushed off quite a bit last year about my chest pain (oh, it's just part of your disease) when in fact, one smart ER doc was wise enough to request a CT and specific blood tests and the vascular study which showed conclusively I had a blood clot.  Last night, even though I went home with nothing other than "do deep breathing and take pain meds" my nurse told me I was right to go in to the ER as without the tests you cannot tell whether it's something serious or not.

Oh, and your doctor should have you do PFT's (pulmonary function tests).  I'm not sure I'm very happy with what you've been through.  Are you in an HMO?  If not, and you don't get the results you want from the doc, shop around for another one.  I'm on my third. :-)

And definitely contact the LAM Foundation for any information they can provide you.

[harbauma]

Melissa,

I never had a lot of pain when I had pneumothorax but the popping and gurgling sounds exactly like what I experienced.  It was especially noticeable at night when I went to bed.  Even my husband could hear it-it was that loud.  After a couple of weeks, I went to the doctor and was diagnosed with a pneumothorax by chest x-ray.

It sounds as though this doctor has no idea what he is doing here.

If in fact you have a pneumo you should not have to wait and put up with the pain, shortness of breath and fatigue for months.

I would suggest getting a second opinion, a third, or however many it takes to get some answers. 

Mary


 

[harbauma]

It does sound as though you might need to be on oxygen.  Most, if not all, of the symptoms that you mention could be caused by hypoxia or low oxygen saturations-the chest pain, the fatigue, change in eye color, redness, grey (blue) lips.  When one is trying to function on low oxygen levels it puts a lot of strain on the body organs and could lead to pulmonary hypertension, heart and kidney dysfunction.  There is some evidence from laboratory studies that LAM cells might actually grow faster in low oxygen conditions.  Your body is trying to tell you something with all of these symptoms.  Do you have a pulse oximeter to see what your oxygen saturations are?  If they are at 88% or lower you should definitely be using oxygen.  Have you been evaluated by a pulmonologist for oxygen use?  Is the pulmonologist aware of all the symptoms you are experiencing?  From what you have described, I am really concerned for you.

I really do understand that battle of not wanting to give up anything more and not wanting to get worse.  It is one of the hardest parts of LAM and one that each of us has to deal with in our own way.  But you really have to be honest with yourself about how well you will be able to support a pregnancy and the effect that hormones may have on the course of the LAM.  I am sure that you would want only the best for a baby and you must make sure that you will be able to do that.  Pregnancy would put a tremendous strain on body systems that seem as though they may already be under strain.  Is the RE fully aware of the difficulties you are now having in functioning?  That person should be.

Only you can decide what is right for you, but I really encourage you to think about the oxygen evaluation first and the IVF later after you have a better idea of what is going on right now.

Life can be a bummer and is frequently not fair.  We can only do the best we can with the hand we are dealt.

Please take care.

Mary





 

[KellyMalick]

Hi Camellia,

I'm sorry that I am writing to you so late after you posting, I just found this section on the LAM site.  My name is Kelly and although I am now 43, I was 28 when I was diagnosed.  I remember all too well the fear and the lack of info from the doctors.  My LAM is very stable and is progressing very slowly.  It can be so different for everyone.  Keep asking questions, if your doctor's don't know, ask them to find out.  If they don't give you answers, find another doctor who will.  You will quickly learn to be your own advocate and that is the best lesson to learn.  Asking questions here and on the ListServ is a great way to find out what other women are experiencing, they are all so very helpful.

Don't give up, there are lots of us here to help.  The fear will lessen over time, but it will take a while.  My first year was very unstable and I was in and out of the hospital more times than I can count.  But I have been doing well since then and I honestly find that I don't think about it all day, every day.  In fact, some days I don't think about it at all.  But it did take a good while to get there.

If you would like to contact me privately, please feel free.  My email address is kellymalick@hotmail.com.

[ashleytollett]

Yes there are people out here as young as you. As a matter of fact, I am a bit younger. I am 21 years old right now and I was 16 when I was diagnosed. I think I am close if not the youngest. I'm the baby of the group. I'm not sure what triggered my lungs to start acting crazy but I'm glad to just be alive!!!

[baker2009-10]

Hi Camellia,

I just got dianosed in October this year. Sounds like you might want to go for PFT's and if need be possibly get put on oxygen. Sounds to me like you have lams too.

I started off very similiar except without the pluerisy. I have had 3 back to back bronchitis and pneumonia is 2003 and just had another one in October with both of them back to back.

part of lams is feeling tired all the time and shortness of breath. There can even be mood swings with this as well.

How are you feeling these days? I still dont know what to really expect with mine other than the fact that it makes me have frequent mood swings and tired all the time and yes I do get short of breath just going up and down my stairs

[mmray31]

hope you get well soon. i was almost diagnosed to LAM but it was prevented an we're very glad about it. I am only 20 and it only happened last February.

[halane34]

I was  only 24 when i was diagnosed, now that i am 30, still suffering from it

[Joanna]

My LAM was discovered like yours when I was younger at  24 years old.  I had several asthma attacks and 4 pneumos. I have lived relatively comfortable for 26 years.  I chose to use lupron and surppress my hormones and only recently Im 48 have I began having problems with my breathing I believe due to my cycle not be suprpressed any longer.

I know your scared early detection however always  youu like myself to at least have the knowledge.
I am comfortable that in the next 20 years you will have access to so  many answers we havent had.

Surely I know the Plans I have for you says the Lord.. Plans to give you a future with hope.
Jeremiah 29 11
Joanna Frank
bfrank096@yahoo.com

[agriffin]

Hi,

I was 31 when I when I was diagnosed with LAMs. Everyone was shock because I was so healthy. I've had 2 kids and still plugging away but the disease is starting to rear its head, I am undergoing test to get on the transplant list. 

I'm glad this forum is here. Is anyone frustrated to be young either physically or mentally but operating like a Senior. I'm on oxygen full time and tired of getting stared at. I'm frustrated my mind operates at a rate my body cannot function. I've worked so hard for my career and know moving up will slowly become an issue. I have 2 beautiful boys I can't blame although all cases point to pregnancy as an agitant for the disease.

Recently I was planning a trip to Hawaii. My doctors advise me against going incase something happend on the long flight over the ocean.  The effects of the disease are really driving me nuts. I just want to know if anyone else every feels as frustrated as I do. The fight in me is strong but some days I want to scream. They call this the lonesome disease because of how rare it is. I agree I do feel so alone some days 

I just want to thank everyone for sharing it really helps give me a boost!