Anne Test

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16 hours ago

sothie

sothieasked the question: Gerd

Hi .I have been on sirolimus for three weeks. Together with having lam I have a hiatus hernia and gerd. I was also treated for an ulcer previously. I am on 40mg of nexium twice daily.Since starting sirolimus I have lots of pain in my tummy and I find the …

4 days ago

Anne McKenna - Community Manager

Anne McKenna - Community Manager created the event LAM Education Meeting in San Antonio, TX

LAM Liaisons, Maria Teniente and Frances Saldivar-Morales invite LAM patients, family and friends to join them for a LAM Education Meeting in San Antonio, TX. Lunch will be provided for all that attend.

6 days ago

    Alyssa

    Alyssaasked the question: Does it sound like LAM?

    I had my first chest CT on Friday the 2nd and I got an email with information to the patient portal to see the results. It said I have a “ 3 mm subpleural nodule in my lower lobe of the left lung that isn’t calcified.” It also said I have fatty …

    1 week ago

    Tashi

    Tashiasked the question: Do I need to stop rapamune for having some dental procedures?

    Today I went to my dentist, and I want to make sure if there are any precautions I need to take before I have them done. I will have some inlays, fillings, and a tartar control. The reason I ask you is because he told me there is some bleeding in my …

    2 weeks ago

    Liezel Haupt

    Liezel Hauptanswered the question LAMP-1 Trial

    Hi Anne, Thank you very much! Liezel
    Anne McKenna - Community Manager also answered the question Anne McKenna - Community Manager also answered the question

    2 weeks ago

    Liezel Haupt

    Liezel Hauptasked the question: LAMP-1 Trial

    Hi, I live in South Africa and would very much like to obtain more information regarding the LAMP-1 trial. It is very difficult for me to phone the listed contact persons, due to time differences, etc. Will it be possible for me to alternatively …

    2 weeks ago

    Anne McKenna - Community Manager

    Anne McKenna - Community Manageranswered the question Sirolimis side effects

    Hi Sothie, Everyone experiences side effects from sirolimus differently. Many women do not notice side effects at all. Here's hoping you fall into this category. Exercise is usually recommended for women with LAM. Take a look at these two videos from a …

    2 weeks ago

    sothie

    sothieasked the question: Sirolimis side effects

    Hi I have started sirolimus a week now.So far I have been fine how long before you notice side effects. I would also like to know about going to the gym will it be wiser not to f go for awhile.

    2 weeks ago

    SharleneD

    SharleneDanswered the question What should I expect towards endstage

    Hi Amanda! Your questions are not overwhelming to me, not at all. I think the more we ask and the more we share, the more we learn, which, as you mentioned, removes some of the unknowns, paving the way for more hope and knowledge. I'll answer in the …
    Anne McKenna - Community Managerariesdiva1116 also answered the question Anne McKenna - Community Managerand 1 other also answered the question

    3 weeks ago

    Anne McKenna - Community Manager

    Anne McKenna - Community Manager created the event LAM Education Meeting in Bellevue, WA

    Joing LAM patients, family and friends as they gather together for an LAM Education Meeting in Bellevue, WA.

    3 weeks ago

      Anne McKenna - Community Manager

      Anne McKenna - Community Manager created the event ATS Meet the Experts - San Diego, CA

      The American Thoracic Society (ATS) Public Advisory Roundtable is presents "Meet the Experts" 2018. This FREE forum is designed for patients and their loved ones to learn how they can advance treatments and cures. Additionally, afternoon breakout sessions will provide sarcoidosis patients the opportunity to ask questions of a panel of world leading experts in the field.

      3 weeks ago

        Anne McKenna - Community Manager

        Anne McKenna - Community Manager created the event Tee It Up for LAM III

        Join us for the annual Tee It Up for LAM III Golf Tournament. Registration will include a golf outing with lunch, games, prizes, dinner and a silent auction. All proceeds will benefit The LAM Foundation.

        1 month ago

          Katie Jensen

          Katie Jensenanswered the question Survey on LAM360 Community Experience

          This week is your last chance to take the LAM360 survey! Thank you to all who have participated so far. If you haven't already, please take the survey now at https://www.surveymonkey.com/r/NDVJM8B

          1 month ago

          ariesdiva1116

          ariesdiva1116asked the question: What should I expect towards endstage

          I would like to know what I may go through on a day to day basis when lam becomes truly endstage. I have a lot of ideas running through my head that feel more fiction than fact. Will there be a lot of sleeping? Will it be difficult to eat due to lack of …

          1 month ago

          Annie G

          Annie Ganswered the question Chest Pain in LAM patients

          I also experience chest pain, and as a newly diagnosed LAM patient, I've been curious about this. The pain tends to be worse in response to changes in my hormones (meaning during my special time of the month which seems like all the time!). My doctor …
          Sally nagelAnne McKenna - Community Manager also answered the question Sally nageland 1 other also answered the question

          1 month ago

          Katie Jensen

          Katie Jensenasked the question: Survey on LAM360 Community Experience

          Help us improve LAM360 Community by taking this quick survey! https://www.surveymonkey.com/r/NDVJM8B

          1 month ago

          Anne McKenna - Community Manager

          Anne McKenna - Community Manager created the event Educational Event in Houston, TX

          Educational Meeting in Houston, Texas! 


          LAM Liaison, Kathi Hawn is hosting a LAM Education meeting at her home on Saturday, January 27, 2018. LAM Clinic Director, Rosa Estrada-y-Martin, MD, will discuss results from the LAM Patient Benefit Conference and LAMposium LA and other updates from the LAM scientific community. Patients with LAM, family and friends are all welcome to join us to connect. 


          Date: Saturday, January 27, 2018

          Time: 6:00 PM

          Location: Kathi Hawn's House

          Address will be sent once you register. 


          CLICK HERE to RSVP for the meeting. 


          If you have additional questions, please contact Kathi Hawn at kjhawn@hotmail.com.

          1 month ago

            Anne McKenna - Community Manager

            Anne McKenna - Community Manager created the event LAM Gathering in Midvale, Utah

            Please join us for a gathering in Midvale, Utah! 


            Join us to catch up with one another and get updates from recent LAMposiums and info on upcoming LAMposium, new info, MILED trial in SLC, and other good stuff!  Hope to see you all there!  

            1 month ago

              Annie G

              Annie Gasked the question: Fatigue

              I have experienced fatigue for many years before being diagnosed with LAM last year and am wondering if this may be the cause. I have good days and bad days, and for the most part I'm able to power through it, but I'm wondering how much of a role fatigue …

              1 month ago

              SharleneD

              SharleneDanswered the question Chyle Lam - Newly Diagnosed

              Hi RJ, I'm glad you posted here. I don't know that I can speak to what is "normal" testing following a LAM diagnosis, but what you listed above seems pretty thorough and extensive. Are they looking at something other than her LAM? An MRI is often …

              2 months ago

              Debbie

              Debbie

              Hi My name is Debbie Stevens. I am in end-stage awaiting a transplant. I would like to share something from my granddaughter. She 13 and she wrote me a song. it is sung to the tune of "I Will Survive". It may not mean a lot to you, but it sure means the world to me! Here goes:
              At first I was afraid. My lungs were petrified.
              Thinking I couldn't live with this thing inside.
              But then I spent so many years thinking I had COPD.
              And I got O2, and learned I could still be.
              A cool grandma that does cool stuff.
              And now your diagnosed with this and you think you've had enough.
              But don't give up on social life. Don't lose your will to live.
              If you deal with Lam accordingly. It will rid you of your strife.
              Go on your way. Don't be afraid!
              Just keep on moving and you will be OK!
              Lam can't beat you. You're stronger than you think.
              Did you know you'd win this. Just cause your awareness color isn't pink.
              Oh no, not you. You can get through.
              Anything this life throws at you, your heart will stay true.
              You've got all these things to do. Like buy those awesome new shoes.
              You'll survive. You will survive. Hey. Hey.
              Thanks for reading this Maybe her words will inspire someone

              2 months ago

              • SharleneDThank you SO much for sharing the wonderful song your granddaughter wrote for you! I found myself tapping my toe as I sang along. She must be an amazing young lady, and although I don't yet know you, it is clear your granddaughter thinks the world of you. :) 

I recently celebrated my seventh year post-transplant. Amazing! I am sending good wishes for your and your family, that your lives remain full while you wait for "The Call." Would love to talk with you if you feel up to conversation. Just let me know. You can reach me at sharlene.dunn.home@gmail.com. 



                Thanks again for sharing your song!



                Warmly,
 Sharlene2 months ago

              • CureLamHi Debbie The lyrics your granddaughter wrote are perfect for you and inspire all of us. On September 18, just over 3 months ago, I received two new lungs. I'm feeling great and so thankful for this blessing. All the best to you on this journey. It's an incredible adventure.

                love, Madeline1 month ago

              Anne McKenna - Community Manager

              Anne McKenna - Community Manager created the event Million Dollar Bike Ride

              <p>The Penn Medicine Orphan Disease Center (ODC) will host the 5th Annual Million Dollar Bike Ride on Saturday, May 20th, 2018 to raise money for rare disease research.</p>

              2 months ago

                Anne McKenna - Community Manager

                Anne McKenna - Community Manager created the event Rare Lung Diseases Conference & LAMposium 2018

                Join us for the 2018 Rare Lung Diseases Conference (RLDC) and LAMposium.

                2 months ago

                  Anne McKenna - Community Manager

                  Anne McKenna - Community Manager created the event LAM Week at the American Thoracic Society

                  The American Thoracic Society (ATS) will be celebrating and educating it's members about lymphangioleiomyomatosis (LAM).

                  2 months ago

                    Anne McKenna - Community Manager

                    Anne McKenna - Community Manager created the event LAM Education Meeting at the NIH

                    Please join us for a special meeting at the NIH in Bethesda, MD.

                    2 months ago

                      Marla

                      Marlaanswered the question Supplements

                      I take Juice Plus+, whole food, Fruits & Vegetables in Capsules that support the Immune system. Many LAM women are on them & keep them healthy. I've been on them 11 1/2 years now. You get 19 variety of fruits & vegetables each & every day! They bridge …

                      2 months ago

                      RJ

                      RJasked the question: Supplements

                      Supplement question: I'm wondering what supplements LAM patients should take to support their immune health, liver etc...? If so, what are they? I've suggested my sister should take lots of antioxidants (Vitamin C, E, A) and minerals to support liver …

                      2 months ago

                      RJ

                      RJasked the question: Chyle Lam - Newly Diagnosed

                      Hello everyone, I'm new here and have lots of questions but I'll just start with a few. My sister's doctor is Dr. Roland Nador in Vancouver. He's had a couple LAM patients before but his speciality is lung transplant and he works out of the Lung …

                      2 months ago

                      ro

                      roanswered the question Taking Pon Lee?

                      Sorry - never heard of it.

                      3 months ago

                      itcecsa

                      itcecsaasked the question: Taking Pon Lee?

                      As a LAM patient, I am trying to enhance the immunity system by taking Pon Lee. Wondering if anyone had try it out and have any opinion/objections to it. Thanks!

                      3 months ago

                      Anonymous

                      Anonymous created the event LAM Education Meeting in Thornton, CO

                      Join LAM Liaison, Audrey Knipe at her home for an Afternoon Tea Party and regional LAM Education Meeting. This LAM Educational Meeting will cover interesting facts about mTOR, LAMposium LA and LAMposium DC along with a guest speaker who will present on, "What you need to know about Anesthesia." Join us!

                      3 months ago

                        Anonymous

                        Anonymous created the event LAM Education Meeting in Westminster, CO 

                        LAM Liaison, Audrey Knipe is hosting a regional LAM Education meeting in Westminster, CO. Patients with LAM, family and friends are all welcome to join.

                        3 months ago

                          Laura Lammie

                          Laura Lammieasked the question: 6-Minute Walk Test & Exercise Stress ECHO

                          Hello Lammies, I recently had to repeat the 6-minute walk test for insurance purposes as well as take a first time exercise stress ECHO for cardiac work-up. Lots of Lammies have shared experiences and frustrations about these tests in the past. Since I …

                          3 months ago

                          S

                          S

                          Hi Esme! Very glad we were able to get together last night... we're here for you!

                          4 months ago

                            DBlessed

                            DBlessedanswered the question Is it normal to experience constant eye afections due to low immune system?

                            Hi Mary, I do not want to discourage you nor do I want to say something that is not true. And, I also want to be honest. With that said, I have found that anything is possible with Sirolimus. I have been on a low dose of Sirolimus and have battled one …

                            4 months ago

                            Faith Strong

                            Faith Strong

                            I have recently taken the VEGF-D blood test and now awaiting results. What should be my next step? If it comes back normal or not normal, what is my next step? Do I get my local pulmonologist that I have been seeing to refer me to a LAM specialist?

                            4 months ago

                            • DBlessedHi Faith,
                              I am sorry you are having to get intimate with LAM. I felt every much like you do right now in late 2015 and beginning 2016. I also am a woman with a strong faith in Jesus, our Messiah and He has walked faithfully with me through everything I have encountered and continually gives me grace, peace and mercy as well as direction each day because I will say, my day's are very challenging. I seem to have fairly decent FEV1 and FVC values but my DLCO value, which tells how well the lungs are exchanging CO2 and O2 is 30% of predicted and normal is 98-100 so I am out of breath much of the time I am moving around. I am on oxygen when I am mobile yet my muscles often feel like I have had a really hard work out or have done a repetitious exercise on a particular muscle to complete failure. I would get to a LAM specialist at a LAM clinic as soon as you can get there. You will not be sorry AT ALL! I do not know where you live but there are LAM clinic's scattered all across the country. There you will find more information and learn more from someone who is seeing more than one patient with LAM. On January 1 2016, I was admitted to the local hospital because my oxygen saturation dropped down to 70%. When they found out I had LAM, they wanted to transfer me to Vanderbilt ASAP. I was glad they did because it was clear they really were not in the mood to learn something new and had no idea what to do with me. At Vanderbilt I was not the first patient they had seen with LAM. You do not have to break ties with your local pulmonologist if you like him/her. It is not a bad idea to have someone locally however, you should be tracked by a doctor who is familiar with the illness and has a network of specialist physicians who are studying this or have other professionals to reach out to should you have any unique complications from it. They have no problem with consulting other physicians who may have some experience in what you may be going through. For educ ...4 months ago

                            • Faith StrongThank you for responding! I will be praying for you. Thank you so much for the information. My closest clinic is probably Dallas. I plan to speak with my pulmonologist this week and possibly set something up. 4 months ago

                            ro

                            roanswered the question Symptoms worsen with a cold?

                            Hi Jules. As the others said, all of us with lung disease must take extra precautions with colds and flu. My LAM doc is so cautious that when I know a cold has set in, I email him directly and he calls a Z-pak (antiobotic) into my pharmacy to hopefully …

                            4 months ago

                            Karen K

                            Karen Kanswered the question Symptoms worsen with a cold?

                            Anything that impacts our lungs, like a cold or humidity, can be harder for our bodies to handle. After 2 pleurodesis only months ago, it sounds like you are quite healthy. It took me many months before I was not routinely dealing with weird chest pains.

                            4 months ago

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