Any info would be appreciated.

[Kathleen]

I am a 50 year old female. I developed a chronic cough about 4 yrs ago to the extent that I couldn't sleep (nor could my husband).  Often I woke up coughing to the point of vomitting.  I was tested and told I had allergies, then emphysema, the asthma.  I have been on every allergy med, breathing inhaler, etc.  Only thing that helps is steroids or an opiate cough syrup.  I went for a CT to check on a fibroid.  (I had UFE about 2 years ago but the fibroid didn't go away.)  Now they tell me I have a solid mass in the lower pole of my right kidney.  I am having an MRI this week but the doctor said that he wants to remove part or all of my kidney.  I also have restless leg syndrome.  I don't think it has anything to do with any of this but figured I'd add to the list.  I was looking up info on renal masses and came about the LAM info.  I am really scared now because I am wondering if this is what I have and also the though of having my kidney removed makes me nervous.  I live in Bridgewater, MA.  Is there someone you could recommend for me to see about LAM if you think it is possible that this is what I have?  I would really appreciate any information and/or advice.

Thank you,
Kathleen

[harbauma]

Kathleen,

Tufts Medical Center, Boston, MA
Geraldine Finlay, MD, Co-Director
617.636.7751

The above is a LAM Clinic in Boston and would be the best place for you to go to be evaluated for LAM.  Geraldine Finlay is a top notch LAM expert.  You can call them for more information about setting up a visit.

You are right to be very cautious about not wanting to have the kidney surgery.  Too many LAM women have had this done and there are other far less invasive methods that might be considered (such as embolization) if it turns out to be the kind of kidney tumor often found in women with LAM.

If it turns out that you have LAM do not despair.  I have had it since 1982 or earlier and am now 62 and still going fairly strong.  I have many small AMLs in both kidneys but they have not increased in size in several years.   I am not on oxygen and work full time as a college professor.  It is almost certain that I will never need a lung transplant.  I may not be able to run and I may not be able to travel to high altitudes or climb many flights of stairs but I still consider myself to be in pretty good health.

Keep in touch and let us know how it all turns out.

Take care.

Mary Harbaugh
Shoreview, MN

[Kathleen]

Thank you so much for the information.  I will attempt to contact Dr. Finlay right tomorrow.  Also, I must say after the possibility of being diagnosed with LAM scared me to death but hearing your story makes me feel alot better. 

Thank you so much for taking the time to respond.

Kathleen