So when I started this blog I wanted it to be about tx. In part this is because it's the biggest thing going on in my own life right now, but it was also in part because I know that leading up to my decision to get evaluated I was ALL ABOUT cruising the web to learn from others. And CFers have SO much to share in this regard...seriously, the people I have "met" online have been SUCH an amazing resource for me. Anyway, that gave me the idea that I might be able to be somewhat "interactive" with this blog. I'm basically a social person, and I get a little sick of always writing about myself, so I thought maybe I could give other people a chance to share.
Here's the deal: answer as few or as many of the following questions for your "group" as you feel comfortable with. You can either do it in the comments section here or email me directly at beatty_112@yahoo.com (with or without your name) and I'll post the info on the site anonymously. I've also enabled anonymous comments so feel free to share without identifying yourself. If we don't get answers from people who have "been there, done that" then I will try and get some answers from people I know who have experience with tx. Tell your friends and get them to share too! Just keep in mind that you're helping your fellow CFers (or people with other lung diseases) and making this blog more interesting :)
Group 1: Pre-Eval or Non-Tx CFers/Patients
1) Age?
2) Do you foresee tx as being something you might need in the future?
3) If so, would you consider tx?
4) What factors might influence that decision?
5) What is one question you would most like to have answered about tx?
Group 2: Pre-Tx CFers/Patients
1) Age?
2) What stage are you at in the tx process (i.e., evaluated, listed, etc)?
3) Why did you decide to have a tx?
4) What are you most excited about for post-tx life? Most scared of?
5) What is one question you would like to have answered about tx?
Group 3: Post-Tx CFers/Patients
1) Age?
2) When and where did you receive your tx?
3) What was the best part of your tx experience? Worst?
4) Name 1 change post-tx that you DIDN'T expect or weren't fully prepared for?
5) What is one piece of advice you would share with others about tx?
Group 4: Caregivers
1) Relationship to CFer/patient?
2) Do or did you feel involved in the tx process? How so?
3) What is/was the hardest part for you of helping a loved one through tx?
4) Any questions or advice you would like to have answered/share?
(BTW, caregivers are awesome. Big shout out to all of you!)
Okay, here's hoping we get some responses. Come on guys...I'm not nearly exciting enough on my own!
(PS: Yes, I promise I will answer the questions too!)
About Me
- Piper
- I am a 33-year-old wife, sister, daughter, friend, law school graduate, CFer, lifelong student of public service, blog writer, patient, Sagittarius, reader, Top chef fan, double-lung transplant recipient (twice!), and dog owner living in Colorado's beautiful Mile High City. I love all things colorful, funny, inspiring, or needlessly sarcastic. I share my city with about 2,500,000 other remarkable people, share my disease with 70,000 other beautiful souls, share my life with some unbelievable family and friends, and share my apartment with one very handsome guy and one really fat mutt with a kick-butt personality. We make it work.
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Oh I like this!!!!!!!!!!!
ReplyDeleteGroup 1: Pre-Eval or Non-Tx CFers/Patients
1) Age?
27
2) Do you foresee tx as being something you might need in the future?
Yes
3) If so, would you consider tx?
I am still up in the air about it but I am leaning more towards YES
4) What factors might influence that decision?
It's really just a personal choice right now. I have to get over a few mental speedbumps before I can make the decision.
5) What is one question you would most like to have answered about tx?
Is all the pain, time, etc worth it?
<3
Great idea!
ReplyDeleteGroup 3: Post-Tx CFers/Patients
1) Age?
31
2) When and where did you receive your tx?
March 27, 2001
3) What was the best part of your tx experience? Worst?
Best would be that i'm alive! When I woke up from the surgery I realized...OK...I'm alive, this is good!! Worst, is probably the side effects from the meds in the beginning...and the pain. I felt that the pain was something I expected, but the amount of new meds they put you on is a lot! My body is sensitive and ti took a while to get used to the meds for sure. I felt like I had ADHD (not to discount the experiences of a person who has ADHD or ADD) for about 3 months...I couldn't really focus, or even read more than a page of anything. But, the end result is that i'm still here 7+years later and doing great! It was all very well worth it and I would do it over again without a second thought.
4) Name 1 change post-tx that you DIDN'T expect or weren't fully prepared for?
Not being able to cough. I know they say it will be hard, but they want you to make sure you are expanding your lungs all the way, and keeping them clear. But, it was SO hard. It was the most pathetic sounding thing ever...like a wimply little fake cough. That was hard. It's still hard. They cut a lot of nerves in your lungs, so if you do have a bit of mucus, it takes forever to come out, and then it's this little tiny thing that isn't yellow! WEIRD!
5) What is one piece of advice you would share with others about tx?
Advice? Roll with the punches, expect the worst, expect rejection, expect minor things to go wrong...then if you experience more "hiccups" you'll be ready. If you don't...good! Also, listen to your docs, they are the pro's and they know what to do, and when they tell you that the pain will go away and it will get better..they are right!
I am guess I really don't fit into a group, but I wanted to respond anyway...so I might have a combination response for group 1 and 4.
ReplyDeleteI am a partner/caregiver, but my husband's is pre-eval/non-tx CFer :)
Age: 31
Tx in Future for hubby: Maybe. We have talked about it, but he is not sure what he think about it. Liver transplant is a definite possibility though (which of course makes the whole thing more complicated).
For me as a partner and dealing with CF in general, I think that the hardest part is simply not knowing what to do. We have figured out that my husband and I want/need entirely different things when we are sick. So sometimes it is hard for me to know what I am "supposed" to be doing at any given time. Communication is the key to this. Also, one thing that is really helpful is discussing situations in advance or talking about them afterward, so that I can handle things better the next time around!
Hi Piper! Great blog.
ReplyDeleteHere are my answers:
Group 1: Pre-Eval or Non-Tx CFers/Patients
1) Age? 32
2) Do you foresee tx as being something you might need in the future? Yes, as my lungs are permanently moderately damaged at this point.
3) If so, would you consider tx? Yes
4) What factors might influence that decision? The age of my children, they are only 3 years old right now. I want to see them grow up!
5) What is one question you would most like to have answered about tx? How did you know it was time for evaluation?
Hi! I wanted to quickly respond to Tara's last comment about when is the right time to do the eval. This is a tough one for me because I was initially evaluated at 13. I would just say, sooner rather than later. I think doing it the way Piper is doing it is smart, she's taken the time to soak things in, and do the testing at her own pace. Instead of an urgent situation arising, and having to rush the process. I think the downfall (my opinion) to that is that it's a rush of emotions too. It takes some time to get used to the idea. I'm sure the docs/tx centers have criteria...FEV1 at a certain percentage etc...but If you are seriously considering it, do it when the criteria is met. I feel like that way, you have gone through the process and can always be placed on "hold" if you start doing better (this happened with me). Give your self the physical and emotional time to go through the process. Just my 2 cents :)
ReplyDeleteThis is a good exercise. Here goes....
ReplyDeleteGroup 1: Pre-Eval or Non-Tx CFers/Patients
1) Age?
34
2) Do you foresee tx as being something you might need in the future?
Yes
3) If so, would you consider tx?
Yes
4) What factors might influence that decision?
I've been trying to get used to the idea of it for about 3 years now. So I'm getting there, emotionally. Lol
5) What is one question you would most like to have answered about tx?
How do you prepare yourself mentally for not making it. This part really gets to me.
Group 1: Pre-Eval or Non-Tx CFers/Patients
ReplyDelete1) Age? 30
2) Do you foresee tx as being something you might need in the future? Yes
3) If so, would you consider tx? I've been on the fence for awhile now, but I'm leaning more toward doing it.
4) What factors might influence that decision? What I'm scared about are the statistics, that only 50% of the people survive for 5 years. I've always said I'd rather have 10 years at 30% lung function than 5 at 100%. Give me quantity, not quality, LOL. So I don't want to cut my life short by tx'ing too soon or rejecting the new lungs.
5) What is one question you would most like to have answered about tx? How horrible will the side effects of the meds be? I fear growing hair in places women aren't supposed to be hairy!
Group 3: Post-Tx CFers/Patients
ReplyDelete1) Age?
26
2) When and where did you receive your tx?
November 2007
3) What was the best part of your tx experience?
waking up and being able to breathe well for once
Worst? swelling and waiting to get my chest tubes out
4) Name 1 change post-tx that you DIDN'T expect or weren't fully prepared for? The strict eating restrictions
5) What is one piece of advice you would share with others about tx?
its worth it in every way its rough at 1st but well worth it
Nike_m
Awesome questions!!!
ReplyDelete1) Age?
37
2) When and where did you receive your tx?
Nov 12, 2001 at Duke Univ. Med. Center
3) What was the best part of your tx experience? Worst?
I never expected not to wake up like so many people say. I guess the best thing would be completing my 23 days of rehab and finally being able to leave Durham and go home.
The worst thing was the pain.. for sure. I was so thankful for Dilaudid. :)
4) Name 1 change post-tx that you DIDN'T expect or weren't fully prepared for?
Depression! I got it about 6 months post-transplant. I was expecting everything to be perfect afterward. I also didn't expect to be needing a kidney transplant due to the meds and diabetes.
5) What is one piece of advice you would share with others about tx?
Get your legs in shape pre-transplant. For me, that was the hardest thing to get back in shape afterward.
And remember... no one dies on the table!! (My surgeon told me that)
After reading my post, I feel like it's a little drab. I just want to stress that I'm so glad I got transplanted. I would definitely do it all over again. I have had a lot of complications post-tx, but nothing compared to near death pre-tx. So far, it has given me an extra 7 years (almost) with my daughter and family.
ReplyDeleteGroup 2: Pre-Tx CFers/Patients
ReplyDelete1) Age? 32
2) What stage are you at in the tx process (i.e., evaluated, listed, etc)? started the evaluation process
3) Why did you decide to have a tx?
I feel I have so much more living to do!
4) What are you most excited about for post-tx life? To breathe
Most scared of? Dying
5) What is one question you would like to have answered about tx?
Cannot think of any questions
Here goes....
ReplyDeleteGroup 1: Pre-Eval or Non TX CFers/Patients
1)Age?
27
2) Do you foresee tx as being something you might need in the future?
YES
3)If so whould you consider tx?
Most definitely
4)What factors might influence the decision?
I do get extremely panicked when going into the hospital now so I do not know how it will be when I am facing tx. Hopefully, I can get a hold of myself and my will to live will be stronger than my fears of tx.
5)What is the one question you would most like to have answered about tx?
Is there any regrets from those who have already went through it.
Group 4: Caregivers
ReplyDelete1) Relationship to CFer/patient:
I am the wife of Shawn 34 a CF'er in process of eval and on the fence
2) Do or did you feel involved in the tx process: We have to meet w/ the tx team and Yes, my husband relies heavily on me to make medical decisions.
3) What is/was the hardest part for you of helping a loved one through tx? Being objective. I feel very responsible for his plan of care and I want to do what is best for him.
4) Any questions or advice you would like to have answered/share?
How are you sure you have exhausted all other measures/treatments? When is this the only choice?