Today, following in the footsteps of my great friend Beth, I would like to do a question and answer post. It may be a total flop, but perhaps there are thing some of the readers want to know and have wanted to ask but have not had the chance. So ask away. About CF, surrogacy, transplant, whatever.....being the mommy to an amazing 6 month old with the challenges that we have...anything.
I hope I get some good ones. I am really looking forward to hearing from YOU and getting to know who's out there reading.
Scarlett welcomes questions too!! haha!
Posts
30 comments:
Natalia, not sure if this is an appropriate question or not, just interested....will you ever know who your donor was??? Or will the family of your donor ever know who their loved ones lungs went to?? Carol S (friend of Beth's)
Not a question,
but just dropping in to give you note of how much I admire your strength, drive, and all of that! Really, a great inspiration!
:)
Hi Natalia- Thank you for sharing your story. I have been following your blog since the article in The Star last fall. I had a close friend with CF and it has been so incredibly touching to follow you on this journey. Thank you for the oppurtunity to ask a question as I have one.
Is it true that you will never experience CF symptoms in your new lungs? And if CF effects other parts of the body, do you still have other concerns with having CF such as one with digestion?
I hope you continue to a strong and speedy recovery.
Thanks,
Lee
Here is my question for you. When you look in the mirror and see your scars, what do you think, if anything? The reason I ask is that when I look at the pictures that you posted of them I think that they are such a beautiful representation of life, and am very moved by them.
Natalia,how are you finding the post transplant drug regimen? I understand there are many medications you must take with many possible side effects(all worth it I am sure!), and am wondering how that part of the journey is going. You look BEAUTIFUL, by the way, and I wish you continued success and happiness with your wonderful family.Barbara.
Dear Scarlett:
When the weather warms up and the cold and flu viruses disappear, do you think that you and I could meet up and have a play date? I think that you look really fun and I have lots of stories to tell you! Oh and I will bring my Mommy too to so she can chat with your Mommy.
Love and razzies,
Brielle
:O)
Wow...so many questions, it's hard to narrow down to one. Okay, maybe two. What was it like to come home after such a long time in the hospital and what are your days like now? And what is your favourite thing to do with/for your little Scarlett (who is just as gorgeous as can be by the way...love the little knitted dress :))
Andrea...friend of Beth's
Not a question, just a comment...Oh my gosh your little Scarlett looks like you!!! Cutie pie!
Natalia,
I have followed your story for months now and admire your strength and courage. You are truly inspiring and I wish you continued success. You look amazing BTW.....and Scarlett is a doll....
Colleen
I have followed your blog since the article in the paper as well. Maybe some day we will meet personally.
My question:
Besides the blog, are you doing any advocacy on CF and organ donation?
I wish you continued health.
Just wondering why you do not have a feeding tub as most cf'ers do.
Thank you. Lisa
whens the party? gotta book a flight!!! ~~wink~~
oh and what are you feeding Scarlett? she is so wonderfully big!!!! :-)
Natalia,
I think you are totally amazing. I admire your strength and persistance and drive. You are an inspiration to me.
Here's my question for you. Are there any residual CF issues you have to deal with since your transplant? Does it affect other areas of your body?
Scarlett is beautiful.
I would love to ask you a thousand questions as I'm on the transplant list waiting for my new lungs. I am so scared waiting for the call yet scared thinking about what will happen if the call doesn't come. You are such an inspiration to me and I hope to meet you one day in the treadmill room at TGH. Thank you for being so honest...
This post is for two people. First Lisa.
- I am a 27 year old with CF and I have had a feeding tube for 16 years. I have also known many people with Cf as well. It has been my experience that not alot of CFer's have a feeding tube. In most of the people that I have met, there weight wasnt always an issue, it was their lungs. ;)
Natalia,
How did/do you get over or come to grips with the fear of rejection? Or have you at all?
I would love to know how I can help myself with that. I will be getting on the list here in the near future and it isnt the sugery so much that scares me right now, it is the fear or rejection.
Any words of comfort for me?
~Angie
Thank you for responding Angie.. The reason I asked as Natlia is so thin.. My best friend is a cf'er as well and it is a fight to get a fedding tube after it was removed.. I was wondering if it is the same thing on their end..
Lisa
This message is for Toni: Im not sure how many CF friends you have but theres a big group of us from St.Mikes/TGH who would love to support you via facebook if you want. You can email me at michellekatie@hotmail.com if you're interested. I'm doing my assessment within the next few months. A couple of us are post-transplant too.
Hi Natalia, nice meeting you in the treadmill room. My legs were so sore after! I do have a question....
Visitors? how are you handling everyone wanting to come and visit you. I want to see everyone but just paranoid with all the bugs going around, so so far just limited it to immediate family. How about you?
Hi Natalia,
I was also wondering if you will ever know who your donor was. And if they family knows who the lungs went to. I'm sure it would give them great comfort in their grief to know that a part of their loved one is living on in such an amazing woman.
Here is my question...
They say that sometimes you take on traits of the person whose organ you have received, such as liking a food you may never have liked or a new interest in a new type of music. Do you have any of those new traits/likes?? :)
Thanks everyone!
These questions are all great, and I cannot wait to answer them. I will finish this post within the next day or two.
Thanks again everyone!!
Natalia, I do have oneother question. I know you have lots to answer and I cant wait to read what you write, but ...
What is a Nova Lung? I have never heard of that. I'm curious.
Also Lisa,
Why did your friend get her tube removed if she still needed it?
Keep Fighting and Living, ~Angie
Hi Natalia, I've wanted to talk to u for so long. I'm 2wks post transplant (cf'er) and I'm so scared. I wish you could talk me through it. I'm stunned that I have new lungs however I had rejection and things are really tough right now. I'm sorry this is more a cry for help than a comment. You amaze me with ur strength & courage. I am so sedated and still in such pain so I apologize for this being all over the place. I'm just so scared and want this to work. Oh how I wish we could talk, I really need to hear about all of it, not that I want u to re live this I just need to know that this is normal & will get better. I'm sorry I sound like a crazy person right now, just feeling so helpless.
I hope we can talk at some point.
You are an amazing person
Kathy Meier
Wow Natalia! It's easy to see your outreach/ministry to others expanding rapidly just through the network you're creating on this blog! Take it slow. I know you thrive on hard work but please don't overdo it. It's fun to see that your readers are networking among themselves already.
Great questions. I won't add any more.
This scripture became very important to me when I was diagnosed with MS when my kids were babies. It’s certainly true and deeply comforting.
“Praise be to the God and Father of our Lord Jesus Christ, the Father of compassion and the God of all comfort, who comforts us in all our troubles so that we can comfort those in any trouble with the comfort that we ourselves have received from God.”
2 Corinthians 1:3-4
I was just wondering what are the one or two things that you are most looking forward to doing once you've fully recovered?
Sorry to bring this up in your blog :) But I can't wait to hear all you have to say!
Angie: She had it removed because of a severe infection. This was a few years ago. Now she is in a battle to have it put back in. Yes she does need it for many reasons.
Lisa
Firstly, I can imagine how difficult it must be for you to be missing that time period of your life that you can't remember. When I was 17 I lost almost 3 days of time because of a car accident. I still do not remember any of it, and have come to terms with that.
They say it is for the best, that your brain tries to block out what is most traumatizing to it so the body can heal.
I have two questions. First, when you were in the hospital, before things really spiralled downhill, what were you able to do to stay connected with Scarlett, and was it a difficult transition for you and her when you came home?
Second, how does it feel knowing that there are so many others following your story and taking such inspiration from you? Is it overwhelming? Or have you found that it is something you can embrace?
Jessica
Natalia
I have a question for you that i think everyone here wants to know. How do you kiss Scarlette without biting them cute little cheeks off. She is absolutley adorable!!!! You are one lucky momma!
~Angie
.....Lisa, Could you subscribe to my blog so that you and I can talk and not take up any more of Natalia's Time with having to read what you and I are saying back and forth... lol
I tried to subscribe to yours but I couldnt get thru. Thank you.
My question for you Natalia (sorry there's so many already, but I really want to know) is: What helped the most in getting through the emotional part of lung transplant? Was it one thing or many different things? Or just time passing by?
Thanks, and its okay if you don't answer my question. I feel kind of guilty for asking more questions when you already have so many to answer. I agree with whoever said, don't tire yourself out answering too many questions :) I just hope you keep blogging for a long time, dear.
Thanks,
Kerry
CFer waiting for lungs
I'm very late to the party but I have a couple of questions if you have time to add them to your list.
1. What has been the hardest part of coming home?
2. What has been the easiest part?
And one more...
3. Are you finally getting some meat on your bones ? :)
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