Post Number: 2
|Posted on Wednesday, December 22, 2010 - 08:11 pm: ||
I'm 31 years old and a little over 1 year out from a bilateral lung transplant done at the University of Washington Medical Center. I was down to less than 20% lung function by the time I got my lungs, so for about a month after transplant I wasn't doing well-- I had to be re-opened and I stayed on the vent for 2 weeks after I woke up. I'm doing well now, returned to work 3 months after transplant, and am trying to figure out how to do all the things I want to do (travel, have children, etc) in the context of being post-transplant.
I'm an avid cook and unabashed foodie. I'm a professor of literature and a poet. I am very happily married and very close to my family of origin.
I'm probably not the most careful transplant patient-- I've returned to eating sushi and medium meat (with the blessing of my pulmonologist), I have an occasional drink, and am probably not as good about using the hand sanitizer as I should be (but I'm working on that-- I really don't want to get sick!). So far I've had one episode of acute rejection 3 months out from my surgery and no illnesses since then. With the exception of ongoing pain from my rheumatoid arthritis, I feel great.
I still find myself with lots of questions about life post-transplant, and run into the typical difficulties of telling my "story" to others who want to hear me say that it was a miracle when in reality it was--and remains-- a challenge.
Happy holidays to everyone,
Post Number: 2252
|Posted on Thursday, December 23, 2010 - 08:03 am: ||
Hello and welcome to TransplantBuddies. Thanks for sharing a little about yourself. If you have questions about things you are trying to "figure out", you have come to the BEST place there is on the internet. If you ask questions, you will get answers.
Hope you visit us often.
Happy Holidays to you and your family!!
Post Number: 120
|Posted on Thursday, December 23, 2010 - 08:39 am: ||
Hello Hillary and Welcome!! I admire your honesty and your desire to "figure out your new life".
I am 16 years out of my bi lateral lung transplant from CF and while I believe i have found a healthy balance, i still have challenges at times that I need to reflect, look for advice, "test the waters"-its normal
I think post transplant life and what that means-what will make you feel happy, what will allow you to feel fufilled, how you will find your own balance, is all unique.
Keeping the communication going with the medical team, with others (it is so great you have joined TB!), with your family and yourself-you will find your way and it sounds like you are doing a good job so far!
Follow your heart with a "aware" mind and be aware of certain limitations but never limit yourself -hope this makes sense!
Enjoy wonderful holidays and welcome again to this wonderful site of others who share similar paths,
Post Number: 1675
|Posted on Thursday, December 23, 2010 - 09:50 am: ||
Welcome to Transplant Buddies. Feel free to ask any questions you like.
Happy holidays to you.
|Forum Leader |
Heart-Liver Transplant - February 14, 2008
Toronto General Hospital, Toronto, Canada
Idiopathic dilated cardiomyopathy 1991 and CHF
- Most of the important things in the world have been accomplished by people who have kept trying when there seemed to be no hope at all - Dale Carnegie
- Bumps in the road can sometimes be mountains, so I have learned to climb mountains - Meagan
Post Number: 15219
|Posted on Thursday, December 23, 2010 - 12:35 pm: ||
Welcome to Transplant Buddies. I too had a double lung transplant. You write beautifully. I will open your blog to be available for additional blog postings. You will see at the top of your blog a link where it will Start a new thread. This is where you can post different titles for your blog.
I wish you the best!
Post Number: 3760
|Posted on Thursday, December 23, 2010 - 12:47 pm: ||
Hi Hillary. Welcome to you.
Post Number: 4
|Posted on Monday, January 10, 2011 - 03:03 pm: ||
Thanks for the warm welcome. I'm sorry I took so long to respond, it took me a while to figure out that I needed to put on email notifications!
I had a really wonderful holiday break. My family came to me for Christmas so that I wouldn't have to travel during flu season, and it was so great to spend a few days just talking and walking with all of them. I have to say, though, it does make it very difficult to imagine living the rest of my life two states away from them. More and more I am realizing that I want to be close to my family for however many years I have left. I want to start my own family, and I want my child to know his/her grandparents and aunt. Mostly, selfishly, I just want to be with the people I love on a much more regular basis.
We moved to California only 3 months after transplant so I could take an academic job, and I didn't realize how hard it would be. Now I am facing another set of hard decisions: deciding between having an academic career (it is EXTREMELY hard to move from one professorial post to another-- you really can't choose where you live) or living near our families. I hate that I even have to contemplate this choice-- it's been such a long road through transplant, and I love teaching and don't want to give it up. Wouldn't it be nice if we could have everything?
Anyway, this is a long-term decision, and I won't be able to make it overnight. In fact, I imagine that I will stay put for a while before I make any big decisions-- but it is hard to be away from the family. I think my feelings about this have come to a head because I am having such a hard time with my transplant team here in Southern California. I worry that not only am I homesick, but I am also at risk in terms of health because of the poor care I am receiving. All of that combines to make me feel a little desperate and worried. Not only do I want to be with my family, I want to be back at my original transplant center, where I felt really well-cared for.
I've rambled on far too long now, but just know that I appreciate everyone's warm welcome and support. I've learned a lot from reading through the thoughtful posts in these fora.
Post Number: 131
|Posted on Monday, January 10, 2011 - 03:40 pm: ||
Hi Hillary-hang in there and trust your gut. Listen to your heart and know that you are not expected to figure everything out overnight. I spent the first year really "learning and figuring things out" myself.
Allow yourself all these feelings and take care of you. It is OK. I will be thinking of you and I am wishing you a peaceful mind as you continue to grow in this new life.
I am glad you have all these wonderful people on the site and that we now have you
Post Number: 5151
|Posted on Tuesday, January 18, 2011 - 11:19 pm: ||
I am sorry I did not welcome you in December. I was a "crazy" busy person in December and missed so many great posts. Congratulations on your successful transplant.
So...welcome to Transplant Buddies! I too had a double lung transplant. I am about 13 months post transplant (Dec. 1, 2009) I did not have as much trouble as you had in the beginning. In fact, I have been tremendously blessed to have had a wonderful first year post transplant.
I can certainly understand the "normal" things that you want to do in your life. I try to be as "normal" as possible, but there are things that I have to do to stay healthy.
It is so wonderful that you have such a great family. I am sure that it is a very hard decision to make about your career. I have been fortunate that all of our family lives in the same state. I have never been faced with a decision like yours.
I hope you continue to visit. We look forward to getting to know you.
Dx: BOOP - May 2006. Rediagnosed with Bronchiolitis Obliterans Nov. 2006
Double lung transplant on Dec. 1st, 2009
Be kinder than necessary because everyone you meet is fighting some kind of battle.