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*Health Issues>>>Respiratory Diseases issues>>>looking for chat rooms or support groups for post lung transplant patients? |
Issue looking for chat rooms or support groups for post lung transplant patients? Best Tip You may be interested in this site/group. The below is copied from an e-mail I received from them back in May so the special chat topics schedule is not the most current but will give you an idea of the topics they discuss. Transplant Support - Lung, Heart/Lung, Heart WEB SITE: http://groups.msn.com/transplantsupportl... Transplant Support is a supportive network for those who are pre, or post lung, heart/lung, or heart transplant. All lung and heart illness patients, family and friends will find support, resources, ideas and the newest in research at the site. The Transplant Support Site is FREE to join and easy to do. You do NOT have to have MSN server to join. Go to the website: http://groups.msn.com/transplantsupportl... Click on the left or right hand side where it says "JOIN HERE or JOIN NOW". Then follow the directions. Some of the features that are offered at the site: The Chat Room - This is a perfect spot to ask your questions, meet others with your same heart or lung illness, discuss the experiences of those who are post transplant and help calm the nerves that occur during the transplant process. The Chat Room is a very welcoming, kind and sharing place. If you have not ever been to a chat room, this is a great opportunity to realize that the Chat Room at Transplant Support is safe and not a chat room that you will feel intimidated by. (SEE THE CHAT ROOM SCHEDULE BELOW) The Transplant Support Chat Room is OPEN 24 hours a day! All times shown below are in Eastern Standard Time ALL CHAT TIMES ARE LISTED IN E.S.T. TIME: Monday: 8pm - till EST - Host : Joanne Schum - Post Double Lung Tuesday: 8pm - till EST - Host: Joanne Schum - Post Double Lung Wednesday: 8pm - till EST Host: Joanne Schum - Post Double Lung Thursday: 8pm - till EST - Host: Joanne Schum - Post Double Lung Friday: 8pm - till EST - Host: Joanne Schum - Post Double Lung Saturday, 8pm - till EST - Host: Joanne Schum - Post Double Lung Sunday, 8pm UNITED KINGDOM Time - Andy from UK or 3pm EST Time Sunday: 8pm - till EST - Host : Joanne Schum - Post Double Lung ******************************... SPECIAL TOPIC CHATS!!! ALL NEW TOPICS FOR 2006 All topic chats begin at 8pm EST. "Please be aware that the topic for that evening will be discussed exclusively from 8pm until 9:30pm" Thank you for your cooperation in making these specially planned chats an enjoyable experience for both new members and regulars. ******************************... JUNE Thur, June 1 - Physical Therapy - What, Why, Who does it? Sun, June 4 - Pharmacy Programs - Many to pick from and research, this will be a sharing of the newest and best Mon, June 5 - Photopheresis - This is an option for chronic rejection - Learn about the pros and cons Thur, June 8 - CF Pharmarcy - For those with CF, this is a good option, learn the details Sun, June 11 - Airplane Air - Is it bad? What can we do to prevent catching something? Mon, June 12 - Aspergillous - A nasty bug. What treatments are out there, and what works? Thur, June 15 - Blood Types - What is yours, how common is it? Does it make a difference with Transplant Sun, June 18 - Bone Density - Have you had a Dexascan? Are you at risk for bone loss? What treatments work? Mon, June19 - CF Pregnancy - Anyone done it? How did your lungs do? Is this still risky? Thur, June 22 - CF Tobi - Pros and Cons of this? Sun, June 25 - Crepitus - or Rice Krispies - Learn about this common experience post transplant. Mon, June 26 - Lung Tx and Pregnancy - What is the success? Why is it risky? Thur, June 29 - Aredia - For bone loss, this is an option. How does it work. JULY Sun, July 2 - Caregiver - Life as a support person, how to take care of yourself too! Mon, July 3 - Lung Transplant - For Pediatric Thur, July 6 - UNOS - United Network of Organ Sharing - Who are they? What do they do? Sun, July 9 - Non Heart Beating Donor - This may return as a choice for organs. What is it? Mon, July 10 - Lung Transplant - Living Lobar - How does it work? Who can use this option? Thur, July 13- Oxygenation - Lets learn about oxygen Sun, July 16 - OKT3 - an option for rejection - here is some helpful info Mon, July 17 - Non Compliancy - What does the word mean? Are you in jeopardy? Thur , July 10 Weight Loss, or Weight Gain - These could be part of your life pre and post tx Sun, July 23 - Writing to your Donor Family - what can you say? Mon, July 24 - Medicare - Let's learn together Thus, July 25 - Munchausen Syndrome - Mysterious and strange, here are some interesting facts Sun, July 30 - New Lung Allocation System - Now we are getting the hang of it, lets learn more Mon, July 31 - Pulmonary Leaks - Some ways to solve, who has had these? AUGUST Thur, Aug 3 - Death and Dying - Uncomfortable topic but a good chance to share and talk Sun, Aug 6 - Cyclosporine - Pros and Cons, side effects Mon, Aug 7 - Bronchoscopy - what is it, name some good and bad experiences, ways to make it easier Thur, Aug 10 - Brain Death - what is the difference from cardiac death? This is how people become organ donors Sun, Aug 13 - Blood Test Results - Where should your numbers be? Mon, Aug 14 - COBRA - A health insurance option, how does it work, and who qualifies Thur, Aug 17 - Bi Pap and C -Pap, what is the purpose and how does it help? Symptoms you may need Sun, Aug 20 - CF -Cepacia - Are there any centers who will transplant this anymore? Mon, Aug 21 - Animal Research - Why it is needed, what is the controversary? Thur, Aug 24 - CMV - EBV - what is your status and what does it mean Sun, Aug 27 - Coping - Pre and Post tx coping skills Mon, Aug 28 - Lung Tx Rejection, what options are out there, what works Thur, Aug 31 - Donor Awareness Training - Short lesson on how to do this Message Board - Another great way to connect to others and ask your questions that you have been meaning to ask and would like feedback from other members. The Resources that are offered at the site continue to grow each day. You will find something of interest to both pre and post transplant recipients, and also to family members and caregivers. In the Resources you can find: Links, Medical Journals, Books, Medical Equipment, Money for Meds, Rx Programs, Support Groups, Lung Tx Centers, Heart Tx Centers. Joanne M. Schum Cystic Fibrosis Bi-lateral Lung Transplant Recipient September 12, 1997 University of North Carolina Hospitals Chapel Hill Residence: Upstate New York email: luckylungsforjo@aol.com Manager of: Transplant Support - Lung, Heart/Lung, Heart http://groups.msn.com/transplantsupportl... "Taking Flight - Inspirational Stories of Lung Transplantation" Compiled by Joanne Schum Authored by lung recipients around the world http://www.trafford.com/robots/02-0497.h... http://www.trafford.com/ Lungs for Life Foundation http://www.lungsforlife.org Joanne's Bracelet, Transplant Awareness Bracelet, CF Awareness Bracelet http://www.lungsforlife.org/other_ways/l... You may also want to check out 2ndwind.org. They don't have a chat room per se but the members frequently e-mail each other and many of the lung transplant centers have recepient support groups that include 2nd wind liaisons. Best wishes and good breathing. Source(s): 39 year old Cystic Fibrosis patient - 2 years post bi-lateral lung transplant Others i (Tim) haven't found any that i would say were good, most are very inactive at the least and not very informative. i didn't have a support group i had to learn as i went, hard to do not knowing what to expect. it also has its up side you can't worry about the unknown 11 years post bi-lateral lung transplant and life long CF patient It's not specifically for post-tx patients, but you will find several over at http://www.cystic-l.com which is a cystic fibrosis support group. |
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