About Me

Were you a member of our Forum on http://TransplantBuddies.com

Yes


Where did you hear about Transplant Friends?

E-mail from Transplant Friends inviting me to join


Are You Male or Female?

Female


Share - which illness led up to you needing a transplant?

Idiopathic Bronchioles Obliterans


Which Organ(s) did you receive? If you are on the waiting list, please share.

Bilateral Lung Transplant May 2011


How many years have you had your Transplant for?

6 months


I am Interested in Transplant Friends because...

Looking to learn from others and to get and give support to other transplant recipients


Which Transplant Center has or will perform your life saving surgery?

Univ of PA


Comments from Your Friends

You need to be a member of TransplantFriends.com to add comments!

Join TransplantFriends.com

Comments

  • Thank you all for the birthday wishes.  I am having a good one...brunch with friends, and calls from family. Later, dinner with some family. 

    It has been almost 22 months since my double lung transplant, and while I have been on an emotional and physical roller coaster over the past months, I am so very grateful to be alive and celebrating not just my birthday, but every day I have been given.  Light and love to my donor's family, and to all of you!

  • Happy Birthday Carole

  • Happy birthday Carole! Have a great day! You should join us for chat on Saturday, Sunday and Monday starting at 3 pm eastern/ 2 pm central time. Hope to see you there!

  • "Happy Birthday Carole !!"

  • Happy birthday Carole! Have a great day! You should check out chat sometime. We have scheduled chats on Saturday and Sunday starting at 2 pm. CST. Hope to see you there! 

  • Happy Birthday Carole !!

  • Hi Carole, I'm so glad you wrote back.  Like you, I was healthy before starting to feel short of breath.  I thought I was out of shape and needed to do more cardio!  But one day after bringing the groceries in the house, I couldn't catch my breath.  So, that's when it all started.  Like you they thought I had asthma.  They put me on inhalers and when they didn't work, they said I was using them wrong!  Finally another Dr. in the group said we need to reevaluate, do a bunch more tests, and then ultimately the lung biopsy to diagnose the BO.  They don't know what caused mine either; their best guess is a rare unidentified auto-immune disease.  So, I have been on a variety of drugs.  They recently switched me from Cellcept to Cytoxan.  I take prednisone everyday too.  I have a Dr. here in NY and then another Dr. at UPMC.  Dr. Sally Wenzel of UPMC is great; she was the most optimistic for tx.  I had gone to Johns Hopkins and the Dr. there was nice, but not in favor of aggressive tx.  I've been stable up until Nov. when I got a cold and my FEV1 dropped to 17% and I could barely do anything.  The Dr. put me on 3L of Oxygen.  Fortunately, right after the new year, I've started to feel better.  I don't need the O2 during the day...unless I go outside in this cold weather.   I don't know if the cytoxan is working or if whatever virus I had is finally leaving my system.  Whatever it is, I'll take it.  

    I have 2 little kids...Mia is 5 and Jack will be 4 in a few weeks.  So, like you know...this is very scary and the idea of a transplant is terrifying.  But, in the end if I have no choice then I will do it.  At this point, I am going to put it off as long as I am able to function.  If I end up like I felt a month ago, then a transplant is more likely.  

    I was telling my husband about you last night and the conundrum of work vs. living life to its fullest at the moment b/c you don't know what tomorrow brings.  I'm not sure of the right answer.  Obviously we all need money to live in the moment, so if there is some way to work as little as possible so you can have time to do the things you want to do, then do that!  Honestly, I think that's how we should all live! It's frustrating too b/c the disease prevents me from doing some of the things I would like to do.  We were supposed to go on a family trip to Turks & Caicos next week, but had to cancel b/c my Dr. said not to leave the country.  That was lousy...my husband was so looking forward to that trip.  

    Well, I do have to run...I'm glad you are doing well now.  Try to focus on the positive and if those negative thoughts pop into your head, make a decision to think about something else....anything else!  Perhaps work on a project you have been thinking about.  

    Thanks again for getting back to me!

    Diana

  • Hi Carole,

    I just read  your story and I'm "excited" (not sure that's the right word to use!) to have found someone with the same disease as I have.  You and I were diagnosed at almost the same time.  I am now 39 yrs. old.  If you don't mind me asking, how old are you?  Fortunately, I have not progressed so quickly.  I am to meet the transplant team at UPMC in feb. or march, but I'm hoping an actual transplant is a long time away.  What treatment did you receive prior to the transplant?  Please share what you can.  Thank you and I'll say a prayer for your continued improvement!  --Diana (from merrick, ny)

  • Hello Carole,

    welcome to transplant friends!!

This reply was deleted.

Add New Discussion

Our Facebook Community

TransplantBudies & Friends Facebook Group

TransplantBuddies & Friends