Cads

Cads received the badge Getting started

Earned the Getting started badge!
StaffordMoNatalie and 680 others also received the badge Staffordand 682 others also received the badge

7 hours 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 days 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>

    4 days 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.

      5 days 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).

        5 days 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.

          5 days 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 …

            1 week 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 weeks 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 weeks ago

            ro

            roanswered the question Taking Pon Lee?

            Sorry - never heard of it.

            3 weeks 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 weeks 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!

            1 month 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.

              1 month 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 …

                1 month ago

                S

                S

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

                1 month 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 …
                  Mary HTashiroand 1 other also answered the question Mary Hand 3 others also answered the question

                  2 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?

                  2 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 ...2 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. 1 month 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 …
                  Karen KMary HLaura Lammie also answered the question Karen Kand 2 others also answered the question

                  2 months ago

                  Anne McKenna - Community Manager

                  Anne McKenna - Community Manageranswered the question VEGF-D Blood Test

                  Hi Jules, While the VEGF-D test can be useful for diagnosis in some cases, it has been known to come back at normal levels in some women with LAM. This doesn't mean LAM is not present, it only means this biomarker is not elevated. There is still a lot …

                  2 months ago

                  Jules

                  Julesasked the question: VEGF-D Blood Test

                  How often do these blood test results come back abnormal/elevated? My results had came back normal, but ended up having a biopsy which was on the fence, but was ultimately decided I had LAM.

                  2 months ago

                  Jules

                  Julesasked the question: Symptoms worsen with a cold?

                  Hello - I was diagnosed with LAM a few months back. I am 24 and overall healthy and do not currently have symptoms other than multiple collapsed lungs, which I had a pleurodesis in both lungs to hopefully halt that. My surgeon did not think I had LAM …

                  2 months ago

                  Rosantsia

                  Rosantsia

                  Great! How does this work?

                  2 months ago

                    Anonymous

                    Anonymous created the event LAM Regional Meeting in Genesee Depot, WI

                    LAM Liaisons, Kathy Peiffer and Marie Glasby are on the road! Join them for lunch or coffee as they had north of their hometowns in Chicago to meet patients with LAM who live near Genesee Depot, WI.


                    LAM patients, family and friends from Illinois, Wisconsin, Iowa and Minnesota are all invited to meet new people, share LAM stories and socialize.  Please come when you can and leave when you’re ready.  Food and beverages will be available for purchase.  

                    2 months ago

                      Faith Strong

                      Faith Strong

                      A little overwhelmed. Just was told my CT scan showed signs of LAM. Right now just wanting to be educated and be able to explain to my family and friends what exactly LAM is. I have never heard of LAM. My faith is strong so I'm preparing myself to go through this journey. I will have a followup CT in January 2018 and also have a blood test sometime in the near future.

                      2 months ago

                        Anonymous

                        Anonymous created the event LAM Education Meeting in Bentonville, AR

                        LAM Liaison, Beverly Jackson is hosting a regional LAM education meeting at the Comfort Inn in Bentonville, AR.  Beverly will share her experiences at LAMposium DC, including LAM Day on Capitol Hill where she shared information about women with LAM with Arkansas congressional members. Thomas Lowder, PhD, will discuss his exercise program and Michele Pycior will present on ways to receive deals on your medications. We will also discuss plans for the Patient Benefit Conference, LAMposium LA and Breath of Hope Gala taking place in November.

                        2 months ago

                          Kimerz44

                          Kimerz44

                          Hello
                          My diagnosis was last year and haven't thought of it much since because my surgeon who informed me of the diagnosis told me at the time that it was something I have but it was nothing to worry about. But recently I have had a few episodes of weird chest pain that at the time I thought was a heart attack but when I went to the hospital we determined it was not. They couldn't figure out what it was so settled on indigestion and I didn't give my having LAM a second thought because my doctor had said it was nothing to worry about so I didn't bring it to the ER doctors attention. But after having two more identical issues I believe it might have been related to LAM I have made a new appointment with my Doctor in hopes of getting him to look into this with me. It is just frustrating when your doctors don't really talk to you about it or give you any information on it. Thanks for listening.

                          2 months ago

                          Anonymous

                          Anonymous created the event LAM Education Meeting in Chicago, IL

                          SAVE THE DATE!


                          Your LAM Liaisons, Marie Glasby and Kathy Peiffer are hosting a LAM Education Meeting at Loyola University with LAM Clinic Director, Daniel Dilling, MD.


                          Dr. Dilling will be returning from the PATIENT BENEFIT CONFERENCE AND LAMPOSIUM LA.  He will share news and research updates from the conference. 

                          3 months ago

                            Anonymous

                            Anonymous created the event LAM Education Meeting in Portsmouth, NH

                            LAM patients, family and friends are all welcome to a LAM Education meeting in Portsmouth, NH. LAM Clinic Directors, Lisa Henske, MD, and Souheil El-Chemaly, MD will join us, along with 

                            Shefali Bagwe, M.B.B.S. Clinical Research Coordinator, from the Center for LAM Research and Clinical Care at Brigham and Women's Hospital. You can have all of your LAM questions answered in a comfortable interactive gathering plus they will give us updates on LAM research taking place at Brigham and Women's Hospital and other medical facilities.

                            3 months ago

                              Anonymous

                              Anonymous created the event AARC Congress 2017, Indianapolis, IN

                              The Annual Meeting for the American Association for Respiratory Care is taking place in Indianapolis, Indiana from October 4 - 6, 2017. The LAM Foundation will be there to educate the Respiratory Therapists from around the country about LAM and Share the new ATS LAM Guidelines.

                              3 months ago

                                Anonymous

                                Anonymous created the event 9th Annual Chowchilla LAPS for LAM

                                Join Peggy Haupt and the Chowchilla Community for the 9th Annual Chowchilla LAPS for LAM. Building awareness and raising money for The LAM Foundation.

                                3 months ago

                                  Sign In to Participate
                                  Or register to become a member