Well, I have have 2 more days of IVs left. My fevers are gone which was the reason I was started on the IVs in the first place. My lungs still feel very junky. Maybe today will be the day I get back on the treadmill. My energy level has been down since starting IVs so hopefully today I will see it increase.
Last week, I went to transplant clinic. Things are stable. I got to have an arterial blood test done. It wasn't as bad as all the other ones that I have had. The RT got it first try. I did PFTs and my 6 minute walk test. The day was pretty uneventful. The highlight of the day was being able to spend it with my dad.
I think my word that best describes the past year of my life is "uneventful." Though I try to live my life the best I can at this phase in my life, it is by far eventful. I cannot wait until I can "live" life the way I am use to living it. I need to decide where my first vacation is going to be after I get my new lungs. My husband and I love to travel and have been unable to for the past three years because of my health. So I pose this question to all my blog readers: Where would you go and why?
Facebook Badge
Proud supporter of
CF Awareness
Organ Donation
My Blog List
-
-
-
-
-
-
-
-
What I Know Now9 years ago
-
Long time since we updated!9 years ago
-
-
-
Six Years10 years ago
-
-
-
-
-
Trigger Point Injections.11 years ago
-
Graduation and Health Update12 years ago
-
Major Changes12 years ago
-
-
CF Community Post13 years ago
-
Spinal Tapopia13 years ago
-
Feeling lost13 years ago
-
-
No Rejection Bronch 3....14 years ago
-
Adventures14 years ago
-
Waiting is no game....14 years ago
-
-
-
-
-
-
-
-
-
-
-
Subscribe To
Posts
Comments
5 comments:
Hi Steph,
I am a pre-transplant pt., not on the list yet, but I am at 28% and trying to hold steady. I know exactly what you are talking about.
My husband and I already have our 1 year Post Transplant vacation picked....FIJI! We have always wanted to go there and I am sure we will get there eventually!
I really enjoy your blog and I wish you all the best :-)
Debbie
I love to travel too and have been trying to pick my first vacation with new lungs! I am so torn between somewhere new and exciting (I want to see the pyramids!) vs. somewhere I've been before but will be able to totally reexperience thanks to new, healthy lungs (Paris?). My clinic doesn't allow you to travel internationally for about a year post-surgery, though, so I guess I have plenty of time to decide!
Stay well -- so glad the fevers are gone!
Piper
Hey Steph!!!
I hate to put a damper on things, particularly with Debbie's & Piper's wonderful suggestions -- but there are some potential travel issues post transplant... Particularly in the first year or two (as Piper alluded to...)
I think I would love to see the pyramids too -- but, in general, it's suggested that we stay away from third-world countries, and places without adequate sanitation facilities... And, it's best to be headed to a place where, in the event of an emergency, they have facilities that regularly deal with transplant... Much of Western Europe probably fits this bill -- Eastern Europe, much of the Middle East, Africa probably do not...
You probably want to be in a situation where you can be evacuated relatively easily to a transplant medical center ASAP, in the event of a problem cropping up -- sadly, Fiji would likely not be one of those places...
Some centers advise that cruise ships are also no-nos... I believe that the lines are much more strict about sanitation, and careful about not letting bugs spread -- there have been some real problems in the past with "healthy" passengers that could be devastating to immune-suppressed passengers... And sometimes, at quite a cost, you can get a policy that would have some type of med-evac service available should you come down with a problem -- that's something you would want to be aware of...
For the first several months -- even the first few years -- being around a lot of people in enclosed spaces might make you very nervous (about catching whatever the goof in the seat next to you might be spewing with his sneezing and coughing...) We have to be a little more cautious flying because of that... (Masks on board the plane, and frequently washing/sanitizing your hands...)
All that being said -- I would plan your first vacation along with considerations as to where you could go should a problem arise... My wife and I went to Carmel, California about 10 months post transplant and we had a wonderful, relaxing time (we're from Chicago...) We knew there were centers like UCSF close by, and we could contact my coordinator and she would direct us where to go in the event of a problem...
What Piper said about reexperiencing is a fun idea -- go somewhere you've gone before, and do some things you've done before -- maybe some that dealt with a good deal of physical activity -- walking, hiking, skiing -- and see what it feels like with "real" lungs! I remember water skiing at our cousin's place -- I'd be exhaused 1/2 way around the lake... Then I had new lungs and made it around twice and it blew my mind...
And keeping focused on what you're going to do after you get your new lungs helps you get through the wait... Glad your fevers are gone -- hope the junk clears...
Love, Steve
Well this is easy.....OHIO.....there is hunting for Brian at Ross lake and of course ME for you!!!! Ha ha!!! Love you and glad you are feeling a little better! Really wishing I could come for your benefit in a couple of weeks :(
Hi Steph, I have been following your blog for awhile now and you just inspire me with every post you write. I am so appreciative of the little things when I see what you and your family are going through. If I were you I would find a nice romantic bed and breakfast, where you can relax, go to dinner and a movie and enjoy one another. You and my cousin Brian deserve it. I am routing for you Steph and you are in my prayers. Plan that getaway!
Post a Comment