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1 day ago

ktlammie

ktlammieanswered the question Participate in Research!

Yes, I have had a single lung tx. I would be happy to answer your survey. Kathy T

2 days ago

ktlammie

ktlammieanswered the question Sometimes I feel SOB, but my pulse oximeter indicates SATs are fine.

Mardi, what you are feeling is due to carbon dioxide (CO2) build up in your lungs. I have had this happen several times. LAM keeps us from being able to get rid of all the CO2 when we exhale and sometimes it builds up enough to cause this shortness of …

2 days ago

Mardi

Mardiasked the question: Sometimes I feel SOB, but my pulse oximeter indicates SATs are fine.

I'm wondering why sometimes I feel short of breath without any exertion but when I check my pulse ox everything is normal. It's reassuring, of course, but why would this be?

3 days ago

maria pearson

maria pearson created the event LAM Education Meeting in Asheville, NC

For the first time ever, LAM patients, family and friends are welcome to join us in Asheville, NC, for a LAM Education meeting. LAM Liaison, Susie Picart is hosting this meeting with Laura Bowers and Dr. Charlie Strange. Join us to learn about all that took place at LAMposium DC including news on LAM research. Laura Bowers will share her experience building LAM awareness with ER and Ob/Gyn doctors and a dietitian will join us to talk about improving lung health through diet and exercise.

1 week ago

    maria pearson

    maria pearson created the event LAM Education Meeting in Ann Arbor, MI

    Patients with LAM, family and friends are invited to the LAM Clinic in Ann Arbor, MI for a LAM Education Meeting.  Meet the LAM Clinic staff, learn about that that took place at LAMposium DC and updated on LAM research. Dr. MeiLan Han and her staff will join us for lunch and to answer questions.

    1 week ago

      maria pearson

      maria pearson created the event LAM Education Meeting in Stanford, CA

      Join your LAM Liaisons, Shellie Owens and Susan Jacobs, RN, MSN, for the latest LAM research news from LAMposium DC and the ATS conference that took place in May. LAM Clinic Director, Stephen Ruoss, MD will be with us to go over the latest news and answer your questions. Patients with LAM, family and friends are always welcome. We will gather to connect over a 'potluck' lunch.

      2 weeks ago

        mj

        mj

        Hello everyone, I'm mj from the PHILIPPINES and we have reported 3 cases already of LAM in our institution and we would like to know if there is a way for our patients to participate in the LAM activities?

        1 month ago

          maria pearson

          maria pearson created the event 5th Annual BLAM! Golf Tournament in Topeka, KS

          The BLAM! Golf Tournament was conceived by the family of LAM patient Annette Roberts as a way to build awareness of the rare lung disease lymphangioleiomyomatosis (LAM) and to raise funds for The LAM Foundation, one of the lead organizations in the fight against the disease.






          1 month ago

            KCP

            KCP

            I was diagnosed on Feb 23, 2017, then went through a confusing time. LAM isn't too well known so when they found a mass on my kidney my nephrologist referred me to a urologist and they said it appeared I had renal cell carcinoma on my left kidney and would need a partial nephrectemy. Then my pulmonologist said perhaps I didn't have LAM. So I decided to get another opinion as well as a biopsy and after a couple of months of visits and patiently waiting for results....they finally have concluded that it was not cancer, but the angiomyolipoma they thought it was in the very beginning. So LAM is my diagnosis. I registered for the LAMposium DC. Looking forward to connecting with others who are working through this disease. So far I am feeling okay. I just feel so tired all the time.

            1 month ago

            • Anne McKenna - Community ManagerHi KCP,
              I'm so sorry to hear about your diagnosis but I'm glad that you finally have some answers. This is a great place for you to ask questions and get some answers. The best way to do that is to post in the question and answer forum because that's where it will get the most exposure.

              I really look forward to meeting you at LAMposium. What a sweet picture of your family!

              Anne1 month ago

            • KCPThank you Anne. My profile pic is of me with my husband and my first grandchild:) I look forward to meeting you as well. Thank you!1 month ago

            maria pearson

            maria pearson created the event LAM SAB/Clinic Director Luncheon

            Scientific Advisory Board and LAM Clinic Director ATS Luncheon

            City Tap House DC

            901 9th St.Washington, DC 20001

            901 9th St.Washington, DC 20001

            1 month ago

              maria pearson

              maria pearson created the event LAM Education Meeting in Salt Lake City, Utah

              LAM Liaison, Lynnette Weese is planning a LAM Education meeting at the University of Utah Hospital. LAM Clinic Director, Robert Paine, MD and Silvia Smith, PhD will teach us 

              how to interpret our PFTs reports so we know how to read and understand them. 

              1 month ago

                VTKimG

                VTKimGanswered the question What is the current research saying about LAM patients becoming pregnant?

                Ashley - Pregnancy after diagnosis is a very personal decision. It is also very difficult because, unless you have already had a pregnancy, it is difficult to know in advance how your body will respond - whether your LAM will progress due to the …
                Kat S.Mary Stojic also answered the question Kat S.and 1 other also answered the question

                2 months ago

                maria pearson

                maria pearson created the event LAM Education Meeting in Phoenix, AZ

                The LAM Clinic at St. Joseph Hospital and Medical Center in Phoenix, AZ is offering a tour of the LAM clinic and hospital. LAM Clinic Director, Sofya Tokman, MD, will introduce you to the LAM clinic staff, present on the latest LAM research and answer your questions. Join your LAM Liaison, Belinda Romney and other LAM patients, family and friends for an afternoon to connect

                2 months ago

                  Ashley C

                  Ashley Casked the question: What is the current research saying about LAM patients becoming pregnant?

                  I am 30 years old and was just diagnosed with LAM. My doctor says there are differing views on the safety with a pregnancy with LAM. Has anyone become pregnant after being diagnosed?

                  2 months ago

                  csirke

                  csirke

                  Hi. Can anyone tell me about whether we know anything about people who do not appear to benefit from sirolimus? thanks

                  2 months ago

                  • Anne McKenna - Community ManagerCsirke,
                    This is a great question. While we know there are some individuals out there that don't respond to sirolimus there isn't any official research that has been done around this. Many that aren't able to use sirolimus for a variety of reasons find some benefits from using everolimus (Afinitor) which is another mTOR inhibitor.

                    This is also a question that will be discussed at the Patient-Focused Drug Development (PFDD) meeting we will be holding in partnership with the TS Alliance on June 21st. If you're interested in learning more about how you can participate (in person or online), please visit http://www.tsalliance.org/pfdd.

                    Take care,
                    Anne2 months ago

                  maria pearson

                  maria pearson created the event LAM Brunch Gathering in Philadelphia, PA

                  LAM Liaison Patti Bebien-Aronoff invites you to join her and other LAMMIES for a casual Brunch in Chestnut Hill at Paris Bistro.


                  DATE: Sunday, May 7, 2017

                  2 months ago

                    Marla

                    Marlaanswered the question health products and supplement

                    I am not trying to "sell" this, but I have been on supplements, fruits & vegetables in capsule! With Getting all these nutrients in my body every day, I don't get as sick as much, plus I have more energy. There are Many LAM women on it & they can tell a …

                    2 months ago

                    ADK

                    ADKasked the question: Rapamune and allergy shots

                    I've been tested for allergies recently and apparently I'm allergic to trees, weeds, and fungus. So my Dr wants to start allergy shots every week for several years. My question is, will Rapamune interfere with the immune response needed for the allergy …

                    2 months ago

                    Beverly Holtzman

                    Beverly Holtzman

                    I am good. just registered for the DC Lamposium. How do I add an picture to this site

                    2 months ago

                    • Anne McKenna - Community ManagerHi Beverly,

                      It looks like you were able to get your picture up. I like it. :)

                      Looking forward to seeing you at LAMposium DC. Let me know if you have any other questions about LAM360.

                      Take care,
                      Anne2 months ago

                    Hope7773

                    Hope7773

                    Hope your day is well Anna Mckenna? Can't believe Easter is around the corner. Have a good day and night.

                    2 months ago

                      Hope7773

                      Hope7773

                      Since I talked to the Mayo Clinic why I was seeing them due to the Lam Disease. I've been having other issues besides my lungs. Now for almost a month My abdomen has distended alot. Continual swelling and abdominal pain. Along with shortness of breath. Is it common to have abdominal swelling like that. I was already almost 200lbs. Now I look 9 months pregnant. Am I crazy. Or is something not right. By the way, my first appointment hasn't even taken place yet. I don't see the doctor at the LAM clinic til Tues. April 4th 2017. Let me know your thoughts and opinion on this....I know your not a doctor. I'm just frightened and need some friendly advice.

                      2 months ago

                      • DBlessedHi Hope7773,
                        I know that you are frightened. I have been there and have experienced abdominal pain and swelling. You are not crazy. There are other complicating factor's with LAM and the abdomen. I would say if you are experiencing extreme abdominal pain and you are experiencing increased shortness of breath and you can not wait until April 4th, I would go to the emergency room. If you can wait, be sure to discuss this with your doctor and tell him/her that you are increasingly short of breath and having swelling in the abdomen as well as pain. Since you are seeing a LAM clinic doctor they will be aware of what you are talking about. If you have not yet explored the LAM Foundation website, I would highly recommend clicking on to the heading LAM patients, family and friends and then click onto the Video heading. There are short video topics that discuss LAM basics as well as complications that can arise from LAM. It may seem overwhelming at first when you learn these things but there is so much hope in managing all this with help. Knowledge is power. It will help you be your own best advocate. If you find you are able to watch some of the video's, and you feel overwhelmed, I will try to be around my computer tomorrow (write myself a note) and will check to see if you have reached out. I watched a couple and then watched a good funny movie or detective show. It 's just a lot to digest at first. But please be assured you are not crazy. Hope you start feeling better soon. I will lift you up in prayer tonight.2 months ago

                      DBlessed

                      DBlessed

                      Hi all,
                      I have a question that I am wrestling with. I am pretty weak from LAM and infections as well as other medical issues. I am doing prescribed physical therapy on my own and hoping to get some strength back but I am barely able to get to the car with my purse, oxygen, Bible, and other paraphernalia. I am thinking of getting a purse on wheels (more or less a briefcase). I have looked for many many days on the web checking out all the cases and their warrenty and think I have an idea but I could use some suggestions. This is wearing me out. If my oxygen were not a backpack that would be a good option but I am looking for a case I can slip a portable tank on as well since my energy is low. I have Fibromyalgia as well so it has been a struggle getting to the car and in and out of it as well. All I have been able to come up with is a rolling purse. I did realize that if nothing else is suggested that I should get a spinner case for the easy of getting in and out of the house. Any suggestions would be greatly appreciated!!!!!

                      2 months ago

                        Thenewme2017!

                        Thenewme2017!answered the question I've noticed a bunch of changes in my body since taking taking sirolumis( starting taking 6 months a

                        Thanks Everyone for your comments and support! If anyone had positive experiences/tools that helped them with side affects they can share I'd love to hear!

                        2 months ago

                        Anne McKenna - Community Manager

                        Anne McKenna - Community Manageranswered the question LAM, Type 2 Diabetes

                        Hi KikiB, This is an interesting question. From the research I've done, there is no connection between LAM and Type 2 diabetes. You may want to consider reaching out to your LAM specialist to get his/her opinion, as well. They may have a different …

                        2 months ago

                        KikiB

                        KikiBanswered the question What do you use to carry your oxygen tanks?

                        Hi Jean, I have an Imogen oxygen concentrator and use it for exercise at the gym and long-distance walking and hiking. I found a lovely flowered cloth backpack that was not specifically designed for a concentrator but fit perfectly. I use a 4 ft. …

                        2 months ago

                        KikiB

                        KikiBasked the question: LAM, Type 2 Diabetes

                        Does LAM affect the pancreas in any way and therefore Type 2 diabetes?

                        2 months ago

                        Karen K

                        Karen Kanswered the question I've noticed a bunch of changes in my body since taking taking sirolumis( starting taking 6 months a

                        The symptoms you listed, specifically the edema and unusual (heavy) periods are known side effects of Rapamune.

                        2 months ago

                        Karen K

                        Karen Kanswered the question Can LAM as it advances lead to changes in Cardiac output and rhythm?

                        One of the side effects of Rapa can be an elevated heart rate. I have been on Rapa for 5 years, and recently began dealing with this issue. I also take another medicine that also can elevate my heart rate. Awhile ago, I changed the time I took Rapa so I …

                        2 months ago

                        Shelby G.

                        Shelby G.answered the question Botox? Is it safe while on sirolmis?

                        I have used botox for cosmetic reasons for about two years. I have also been using it for Migraine treatment for about one year. I have approval from my pulmonologist, neurologist and nephrologist. They are not concerned with it interacting with …

                        2 months ago

                        Optimistic

                        Optimistic

                        Hello All,

                        I had a lung biopsy two weeks ago and was diagnosed with LAM on Thursday, 3/23/17. I have gone through sooooo many emotions over the past few years trying to figure out what's going on with my health. Currently, I have a sense of relief that "I now have a diagnosis!" I am meeting with my doctor today for the first time after my lung biopsy. I have done some research on my own on the disease but I am not quite sure what I should ask him today when we meet...any suggestions on what I should ask? Any suggestions would be greatly appreciated.

                        2 months ago

                        • Click to View All Comments4 comment(s) -
                        • DBlessedHi, Optimistic,
                          To be honest I didn't know what to ask. In Sept of 2015, when I went on the web much of the data had not been updated so much of it was sad and conflicting and I realized there was so much to learn. I watched all the LAM Foundations vimeo's on LAM and that helped a bunch. They had a hopeful approach and I think I watched around 25 (that was on the old website) in the first 2 months. While I can find all that I watched now, they still have many to glean from. My doctor was Lisa Young at Vanderbilt and she really explained things well. She seemed to anticipate my questions. I would say that questions will come to you as you learn the new aspects of all this. I hope this helps.2 months ago

                        • DBlessedHi, Optimistic,
                          To be honest I didn't know what to ask. In Sept of 2015, when I went on the web much of the data had not been updated so much of it was sad and conflicting and I realized there was so much to learn. I watched all the LAM Foundations vimeo's on LAM and that helped a bunch. They had a hopeful approach and I think I watched around 25 (that was on the old website) in the first 2 months. While I can find all that I watched now, they still have many to glean from. My doctor was Lisa Young at Vanderbilt and she really explained things well. She seemed to anticipate my questions. I would say that questions will come to you as you learn the new aspects of all this. I hope this helps.2 months ago

                        • Anne McKenna - Community ManagerHi Optimistic,

                          I'm so sorry to hear about your diagnosis but glad you found The LAM Foundation. If there is anything I can do to help you as you are learning more about the disease, please don't hesitate to ask. You can reach me through LAM360, by phone at (513) 777-6889 or by email at amckenna@thelamfoundation.org.

                          Take care,
                          Anne2 months ago

                        orchid

                        orchidanswered the question Botox? Is it safe while on sirolmis?

                        I have used Botox from time to time for cosmetic purposes with no ill effects whatsoever.

                        3 months ago

                        DBlessed

                        DBlessedanswered the question Botox? Is it safe while on sirolmis?

                        Hi Newme2017, I wanted to share what I have experienced. I have been on Botox for a longtime for chronic migraines, myofascial pain and blepharospasm. There are complicated factors with Botox usage and problems to watch for during treatment with the …

                        3 months ago

                        Trish

                        Trishanswered the question Can LAM as it advances lead to changes in Cardiac output and rhythm?

                        yes, i am on several other meds but the only two new medications in the past few years are sirolimus and spiriv and the cardiologist went through my list of meds and nutrition and couldn't find anything that could cause it. It was ruled out.

                        3 months ago

                        Hope7773

                        Hope7773

                        I have a question that been stirring in my mind that doesn't make sense to me. Is it possible to get infections more often when you have LAM Disease. I'm constantly sick since I have had this. So weak and lethargic. I can only rest night and through the day.
                        I don't see the specialist for further intervention into the LAM Disease until April 4th,2017.
                        By the way every drug and antibiotics. Do nothing. Took it for 17days. No response to medications. To help me feel better just got weaker and weaker.

                        If anyone can give advice I would appreciate it. I see us as all sisters supporting and loving each other.

                        3 months ago

                        • Click to View All Comments4 comment(s) -
                        • DBlessedHi again Hope 7773,
                          My message got cut. I don't know if they are starting to limit how much you can share but I think how you feel is important to address,
                          Besides better nutrition, targeted medications for some of my issues and adequate sleep, the major thing that has helped me the most in the past is using a step wise approach in handling all this and getting into the pool and learning to do Ai Chi. Hydrotherapy is great for people who are struggling to overcoming serious health issues because the water helps in a couple of ways. First, it reduces the impact on the joints and muscles and secondly, the gradient pressure of the water on the body gives some much needed help to the lymphatic system and to a lessor degree the circulatory system. I have used graded exercise, which means I do not push myself beyond my reasonable limits. If I should do that, I end up back in bed for as long a week or more trying to recover. I had a physical therapist in the beginning to help me with that. My first goal was to get out of bed and get cleaned up and dressed and to make it to the car. Once I could do that, I added getting to the pool and just getting in and slowly moving around. At this point the physical therapist took over and lead me the rest of the way. If you do not have access to a warm pool, the LAM Foundation has a great resource under "Newly Diagnosed." Once there click on "Patient Resources" and under that you will see "Exercising To Maintain Healthy Lung function." The last time I had a flare I actually started with exercises like these, doing only a few and slowly building up to where I could do more reps. Again, the physical therapist taught me how to do gradient exercise and how to tell when I had done all that I should. But it was over 18 years ago that I had to start with the very basics. In the past, I have gotten so far down that I truly wondered if I would ever come back up. Fortunately I did each time I have had a major set ba ...3 months ago

                        • DBlessedHi Hope,
                          that is I did each time I had a major set back. If you would like more information on the Step Wise Approach you can download a free copy (4 pages), from the Hunter-Hopkins website. You do not have to have ME/FM/CFIDS to benefit from the approach. This was developed for very ill people who were struggling with body pain and severe exhaustion, which made getting out of bed the greatest challenge to their day. Years ago I incorporated these principles into my life so that I could manage my ME and not allow my ME to manage me. This is a safe and accurate website that is not pedaling resources for money. Late last summer when I was able to get back into the pool, I slowly started to feel better and could finally see some improvement. Also, I have not had a chest infection except for the one I had after surgery when my defenses were likely low. Exercise is good medicine (so to speak). It stimulates the brain to release endophins which makes us feel better mentally and physically. My hope is that this gives you some encouragement and some new ideas that may work for you. Hopefully others will share and add valuable information for us all. Please feel free to contact me if you need clarification on anything I have said. Lastly, I pray the Lord touches you giving you peace and encouragement and that He will bring healing to your many difficulties. I do know He is ultimately the only One who can bring about something beneficial out of something tragic. To some that may sound simplistic, but through the years I have learned He is very real and very present and true to His Word.3 months ago

                        • Anne McKenna - Community ManagerI'm so sorry to hear that you've been feeling so terrible. I think that you will find that seeing a LAM specialist will be very helpful. I would suggest making a list of the questions you have and things that are bothering you before you go so you don't forget anything while you are there. If you have any other questions, feel free to ask them of this group or give me a call at The LAM Foundation at (513) 777-6889. 2 months ago

                        Thenewme2017!

                        Thenewme2017!asked the question: Botox? Is it safe while on sirolmis?

                        Botox? Is it safe to get injections while on sirolmis? Anyone had a negative experience or positive?

                        3 months ago

                        Anne McKenna - Community Manager

                        Anne McKenna - Community Manageranswered the question I've noticed a bunch of changes in my body since taking taking sirolumis( starting taking 6 months a

                        Thanks for your question. What kind of body changes have you experienced? How have they changed your life? Thanks, Anne

                        3 months ago

                        Thenewme2017!

                        Thenewme2017!asked the question: I've noticed a bunch of changes in my body since taking taking sirolumis( starting taking 6 months a

                        Body changes on sirolumis.

                        3 months ago

                        Trish

                        Trishasked the question: Can LAM as it advances lead to changes in Cardiac output and rhythm?

                        I wonder if someone on this forum has a similar experience I have with onset of cardiac arrhythmias as LAM progresses. I have always been very athletic and still exercise a lot but over the past years have experiences increasing levels of heart …

                        3 months ago

                        maria pearson

                        maria pearson created the event Tee it up for LAM! Chicago, IL

                        Golf Outing to benefit The LAM Foundation


                        Golf Outing with Lunch, Golf Games, Dinner and Silent Auction

                        3 months ago

                          maria pearson

                          maria pearson created the event LAM Education Meeting in Boston, MA

                          The LAM Foundation and Brigham and Women’s Hospital invite you to attend a special patient & family meeting.

                          Please join us to hear the most up-to-date research and clinical advances in diagnosing and treating LAM.

                          3 months ago

                            maria pearson

                            maria pearson created the event McCabe Pub 5th Annual Crawfish Boil, Nashville, TN

                            If you live near Nashville, TN, mark your calendar and join the Dean family for the 5th Annual McCabe Pub Crawfish Boil.  Saturday, May 6, 2017 at McCabe Pub. Proceeds benefit The LAM Foundation.

                            3 months ago

                              maria pearson

                              maria pearson created the event LAM Education Meeting in Chicago, IL

                              You are invited to a very special LAM Education Meeting.

                              Saturday, April 8, 2017 at the Loyola Stritch School of Medicine


                              Please join us as we welcome a panel of experts from the Loyola LAM Clinic to discuss concerns related to LAM treatment, care and management.  

                              3 months ago

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