CF Community Post

December 11, 2011 at 9:01 am · Filed under CF & Health, Transplant

I’ve been writing much more lately on my transplant specific blog then here. My post yesterday though was a cheers to this community so I wanted to post it here as well. We all know how strong our CF group is out there and I’m so appreciative for every one I’ve met! Thanks for all the support through the years ~

http://kellystransplant.wordpress.com/2011/12/10/community/

Comments

What the verdict means to me.

September 15, 2011 at 1:59 pm · Filed under CF & Health, Transplant

Being listed now means a few things that almost seem harder to grasp then the actual surgery itself or need for surgery.

I work. I work for myself. I love my work. I have 2 businesses and thoroughly enjoy both of them. I work a lot, but have been able to set my own schedule to accommodate my health and being sick when I needed to. That’s how I’ve lined my career up from the get-go, damn….15 years ago. I love it.

Design. Most people who might be coming here already know that I am a graphic designer. Most people also probably know that I started a photography biz within the last 2 years and expanded to wedding photography more recently. That was always one of my dreams but very distant dreams since I graduated in graphics, not photography. I never put much thought into pursuing photography as a business until 2 years ago when I thought, “heck why don’t I try selling some of my nature photos and see what happens. It’ll be fun and I’ll just see what happens,” and that was that. I started selling some prints, not much but enough to keep me smiling. It was really just encouraging if anything.

Then one day about 1 year ago, I thought, “heck why don’t I pursue family portraits with a goal of getting into wedding photography.” So that’s what I did. It was such a nice challenge photographing people and I had always *loved* trying to capture those fleeting moments of emotions with my family. So onto my side gig. It started picking up quickly actually with referrals. It started to compete with my love for design pretty quickly, lol, but I still love both now equally and for different reasons. Design, I’m at my computer creating. Photography, I’m outside and socializing while I create. Being able to do both is amazing!

So, now, what do I do? I obviously can’t do wedding photography anymore because it seems far too irresponsible for a bride and groom to count on me 6 months out or more as their photographer knowing full well I could be called in for transplant at any time. Plus, who wants a wedding photographer with an oxygen tube up their nose? I’d be hard pressed to find that. Family portraits will be difficult too if I’m needing to wear O2.

So I’m really bummed!! I can keep doing my graphics, but I’m already in the process of lining up another designer to transition into my place with my main client. It’d be irresponsible of me not to line someone else up for him in case I’m out for a while. I’m also bummed because I’ve been a bit of the bread winner recently, due to a little thing called ‘the economy’, and now I need to focus on all this tx stuff and be ready.

In light of all this, I wanted to share/post a couple of my wedding picts from a few months ago. This was a big wedding, it was really fun, a lot of work, but I’m happy with what I captured.

Comments (1)

Lots of Health Updates

September 10, 2011 at 2:43 pm · Filed under CF & Health, Transplant

Kitty Krueger! Ahh Ha

Hello to all those who read my little blog here. XO

Yesterday was my 14th day for tune up but they didn’t want to let me go home. Another week to go. I’ve never had a 3 week tune up before.

Docts were concerned b/c my PFTs were only up 3 points after my 2 weeks, which I thought was pretty cool but they didn’t. My oxygen levels are way up (good news!) since coming in here. When I got here they were 88% on room air and used 3 liters to get me up to 94%. Now – I’m back up to 92-93% on room air (my usual is 93-94%) and only need it on my 3rd or 4th lap around the floor  or when I cough hard. But the doct thought I should better then I am and wants to continue to see if this is my new baseline or if I get a little better. I’m all for getting a little better.

On to my transplant evaluation – I took all the tests needed last week and the transplant team will be reviewing my case this Wed. Okay then. Just waiting to hear what they think. Lots of anticipation here.

Did everyone else who’s gone through tx eval also get that echo bubble test, or just an echo? I had both and wasn’t sure if the bubble test was given b/c of results shown in the regular echo or if it was a routine tx test. No one had mentioned the test to me before or heard about it from any of you, so I was really surprised and weirded out. All I know at this point is that I saw lots of bubbles going through to the other side of my heart where they’re not suppose to go. Lots of clump bubbles, again and again and again. Now I’m waiting to hear what all that means for my ticker.

My sister, who had a stroke 2 years ago, was just given this same echo bubble test last month and she had thousands of bubbles going through. The following week had surgery to close the flap where the bubbles were escaping. She’s fine and was out the next day, but they do think that was a possible reason that caused her stroke 2 years ago. They can’t be certain, but now that they know she’s had this huge hole in her heart, they’re thinking that might have led to it. And….I saw bubbles! And….I had a pulmonary embolism 4 years ago, and now I saw bubbles! lol You can imagine how anxious I was yesterday. I’ve mellowed out a bit today luckly, but eagerly awaiting results still.

One other thing that’s been going on and you might find interesting is that I’ve been really dizzy since Wed. Yesterday it lasted ALL day long into the night, and was super intense. Today I have it but it’s not as intense. They don’t know what this is all about. Only possible thought so far is that it’s a withdrawl symptom after stopping my Lexapro (anti-anxiety) med last Friday cold turkey. I had to stop Lexapro in order to start my new MAC drug, Biaxin. Apparently the combo can cause irregular heart beats so they wanted to be safe. Not sure what’s up now since I have lots to feel anxious about. They did give me a prescription for Ativan as a replacement on an as needed basis, which helps.

Okay, other side effect I’m havingare terribly scary nightmares from the Biaxin. I call it the Freddy Krueger Effect. lol I don’t want to go to sleep b/c of the nightmares I’ll have. Very nice indeedy.  <<  sigh….. >>

I think that’s it. But I’m still laughing and it’s okay.  🙂  Kitty Krueger is pretty cool though, right?

Comments (3)

New Transplant Blog?

September 1, 2011 at 12:46 pm · Filed under CF & Health, Transplant

I’m thinking about starting a new blog just to keep family aware of this next chapter of transplant. Should I do it? Have any of you found that it’s useful for family and friends especially those not typically up on all your CF stuff?

I feel there’s a need but it might just be me. I know how things can turn ugly so fast and since right now I don’t really see that coming I don’t want to be blind sided by a downfall without having reached out and tried making contact about what’s going on. Makes sense, right?

I’ve always wanted to make some of my own tshirts for my transplant time, like I did for Quoof. ❤ And now the time is here, probably. For years now, I’ve imagined making tshirts, starting a fundraiser for myself once tx time comes as well as a tx blog to keep people updated. I know I want someone, whether it’s my husband, mom, sister or CF friend, to keep my CF world posted when the surgery actually hits. I haven’t figured all that out yet but I always figured it would be updating the blog or website I make in addition to posts on CF2.

Seems a bit surreal that I’m talking about all this like I’m going to be that next person on the forums that everyone is talking about and worried about and checking in on. Scary! Hopefully I have years and years left once I get my new lungs, if that’s what’s going to happen. All things considered it seems about 90% certain that the tx team will list me, so this is where my mind has gone. I can’t believe it’s going to be ME one day. But that’s how the cookie dough rolls.

I guess I have a lot of work to do, on top of all the business work I already have. When do I have time to be sick? lol

And should I post the final URL on facebook or email it directly to just those people I want to have access to my updates? I’m not really interested in keeping secrets and have been in the mind set to be as transparent, open and free flowing as possible to anyone around me. I kept my CF and everything about it secret throughout my childhood and probably half my adult life. I decided to open up and not worry about sharing my CF with anyone about 6 years ago…  that was my intention anyways, and it’s gone pretty well.

Comments (2)

Transplant Eval Is Here

August 31, 2011 at 11:49 am · Filed under CF & Health, Transplant

Two transplant doctors just came in to my room to ask some more questions and they ended up saying that they think I’m “in that window” and this is the right time to get listed.

I’m on course to go through all the tests in the next week and it sounds like by the end of next week I’ll know whether I’m listed or not. Hmm. Wow. Okay then.

I wonder how far up the list I’m going to be, what my LAS score will be. This is pretty much all consuming and yet I have so much real world work to be doing, graphic design stuff and photography. I’m actually behind on work and yet have all this to be thinking about.

Hmm.

Comments