My Two Favorite Dorks

My Two Favorite Dorks

Sunday, January 11, 2015

What's Next?

I had just finished loading up my car with some stuff to take to the thrift store yesterday when a neighbor walked by with her dog and started to chat. She knows about my transplant and was asking how I was doing, if I was feeling stronger every day. I told her I was still doing rehab and, yes, getting stronger every day.

At that moment I felt something missing. What else am I doing that's worth while? What's next for myself?

Yes, I still need to take the time to do my rehab (physically, I still need to get stronger) and to make sure I'm giving my body plenty of rest. But then what? Part of me is ready to jump back into life! Although, admittedly, I'm not quite sure what that would look like right now.

The Complications aka The Trouble With Returning To Work

The problem with returning to work - even part time as I was working before - is that I would lose my federal disability. The disability that took me eight months to get approved for. Yeah. I am not taking that lightly. I got free help getting approved with a CF Foundation-sponsored lawyer the first time around but I don't know if that would be available to me again - and you need a lawyer to cut across the BS for this kind of thing.

I am allowed to work a little while still receiving federal disability, but it isn't much and it's "frowned upon" - I guess if you're disabled they want you to truly be sitting around not doing anything at all. (Well, of course with transplant it's different.)

Assuming I did not return to a paying job, I would ride out the rest of the two years left on my work long term disability (until Dec 2015) and keep my Aetna work insurance. At that point, there would be a gap I'd have to cover before the 2.5 year federal disability waiting period for Medicare would be up. So I would need to get Cobra or look for private insurance before my insurance would switch from Aetna to Medicare.

Any way you slice it, things ain't gonna be as easy insurance wise as they have been for me so far. (By the way, I received an "itemization of services" in the mail from Duke the other day. I have been saying all along that my transplant was free but I lied; out of about $555,000 of defined costs during transplant I end up owing $266. Not bad. And thank you, dog!)

Finding a Job That Fits

So what if I were to go back to work and lose my chance for Medicare after the time I would qualify for it? (In any scenario I keep my Aetna insurance until Dec. 2015.) For one I would need to find an employer who offered me insurance. This could be tricky because I do not see myself working beyond part time at this point. In addition to those reduced hours, I would need to find an employer who was understanding about me needing time off for doctor's appointments, health flare-ups, and who allowed flexibility to work from home when needed. The place also needs to be somewhere with not too many people and where I feel comfortable about people not coming in sick.

I'm not saying that would be impossible, just difficult.

The alternative is for me to find a place to volunteer on a regular basis - it would have to be a regular basis (i.e. job like) because already I can feel myself starting to go crazy not having something like that to do! Maybe I would go in a couple of days per week, possibly work from home some. Maybe even work for more than one place.

Now for the exciting part, thinking about what kind of work I would want to do!

Things I Can See Myself Doing (a bit of a brainstorm)

I'll bet this list will come as no surprise to any of you!
  • Working with animals - while this is my first love, when it comes down to details it's not as neat as I wish it was. I always saw myself volunteering at Safe Haven for Cats (a really great no-kill shelter that I volunteered at long ago.) The problem with the "hands on" aspect of this is that I am not supposed to be around kitty litter. (It's one of THE big no-nos post-transplant because of a bacteria you can pick up.) Each kitty cage contains a litter box at Safe Haven, and, similarly, other places I assume. Also, I need to be super careful about cat scratches, so any strange cats could be iffy. So what about doing some kind of volunteer office work? Writing or website help? That would definitely be possible but, let's face it, it's far less fun when you can't be around the furry ones!
  • Pet sitting - this is something I could do (cash under the table) for friends at first and maybe more as word-of-mouth spread. Again, no scooping kitty boxes so that would be limiting. Work would be sporadic and, probably the biggest problem, we want to start doing stuff on weekends and we like to travel (and want to travel as much as possible this year!)...all the times people would need me. 
  • I could be more like a dog walker - someone who would check in on pets during the day, maybe even walk them. That would be good exercise! And checking in on kitties requires no kitty box scooping.

  • Volunteering for an environmental organization - ah, my second love. I can see myself volunteering for an environmental organization. Again, I would love to offer my writing, website writing and design skills, organizing or any other help that didn't involve direct solicitation or too much other front-line work to either The Nature Conservancy or another local group. 
  • Volunteering for another good, local organization whose cause I agree with. This gets more outside my comfort zone. Of course I love places like the women's shelter, but I'm not sure I would feel comfortable volunteering there.
  • Becoming a Big Sister - this is something I've always thought about doing but never had the time to commit. I think it would be awesome to be a positive influence on a young person! I could maybe even stretch my brain and be able to help some with school work. :) The problem with this kind of work - any kind of work with kids - is that kids are germ factories! If they aren't sick they could be carrying something from one of their school mates. I can't avoid kids forever, but maybe this is something better left for after I'm not quite so immune compromised. 
  • Nanny - Many of you know I nannied for years during college and for a couple of years afterward. I liked the work because of the families I worked for. This is something I could do again (again, for cash) but it would have to be the right situation. Again, there is the germ issue - I would not be able to work if the kid was sick. Ideally it would be a kid who was not also in daycare or school yet so not exposed to so many other germies.

  • Lung Transplant Foundation/Donate Life NC - I've already reached out to Donate Life NC. They expressed interest in sharing my story, and I would like to offer them my help possibly as well. A lot of other post-transplant folks also become involved with the Lung Transplant Foundation, another great organization. I joke they are the post-transplant version of the CF Foundation because so many transplanted cystics raise money for them.
  • I just looked on the City's website for volunteer opportunities and found a few other cool possibilities: Parks & Rec volunteer program, Recycling Block Leader (this has my name all over it!), and the Greenway Volunteer Program. More possibilities!

Photos: Universe of Possibilities,; Businessman,; Work/Life Balance sign,; Woman with Kitten Painting,; Dog Walker,; Donate Life/Done Vida,

Thursday, January 1, 2015

The New Normal

There are many steps in recovering from a major surgery: the number of things you are hooked up to decreases, you get released from the hospital, slowly get strength back that was lost while sitting around in a hospital bed.

Also, in my case, there's been the small steps toward being able to eat normally again (still working on that), getting various tubes/stitches/staples removed (everything is gone except for my feeding tube) and completing 23 grueling sessions of pulmonary rehab in order to graduate - which I did the week before Christmas - yay!

Along the way, little slices of normal life start to insert themselves into the medical routine and they are oh so very welcome. Going out to dinner or a movie? Awesome! Putting up the Christmas tree? Hell yeah! A trip out shopping instead of buying on Amazon? What fun! (All of course done with my mask discretely in my pocket book ready to be deployed if need be.)

Are We There Yet?

Recently I have had some people ask me if things were getting back to normal. The answer to that is not straight forward. 'Normal' to me before surgery was days of fatigue, doing treatments and dragging myself to rehab. Rewind to a little over a year ago before I had to stop working and life consisted of mornings of drinking coffee and reading the paper while doing my therapy, going into work, coming home to do therapy and exercise, cooking dinner, watching some TV with Todd, doing my final treatment and going to bed. 

So what will life look like with no treatments and only having to remember my medication times throughout the day? (I am still getting used to that.) The answer is I have no idea and the possibilities are incredibly exciting to me!!

I would like to go back to mornings of reading the paper and drinking coffee before doing some kind of work (what that will look like, whether actually going into an office as a paid job, doing some freelance writing, volunteering somewhere or doing something else at home.)

Exercise will continue to be a big part of my life - I want to get back to being able to go on bike rides with Todd and go to yoga classes!! I might even finally be able to complete yoga teacher training like I had wanted to (not to teach but just to get deeper into the practice.)

I want to have an active social life again, going out with friends - I miss that! (Although I will have to continue to adapt to a basically alcohol-free lifestyle, regrettably.) I want to be able to go on trips out of town on the weekend at a moment's notice. I miss our mountain house so much I can't even tell you! And I miss going down to Todd's aunt's beach house at Holden Beach - it is so beautiful down there.

Speaking of Getting Away

Speaking of getting away, before any of that happens I want to plan a couple of trips. I want to go to Atlanta for a weekend to see my good friend who's moved down there. And I want to go to Cleveland to see my dad/step-mom and family - and hopefully my brother can also drive down from Michigan so I can see his family too (nephew Simon!!)

Todd and I are also starting to plan summer vacations. We have a friend's wedding in Vegas in April. We want to go to Montana sometime. And we are starting to think longer out (next year) about a trip to Belize or some place like that on one of Todd's brother's fishing trips. (That would require a lot of planning and preparation from an infectious disease standpoint but the docs have said that with enough advanced time it should be fine.) We also have good friends in Ireland that we would love to visit. So much to do!

So what am I waiting for? That's easy - two things: I'm waiting for my rejection (discovered during my bronch a month ago and subsequently treated with a large blast of steroids) to clear and for my Nissen stomach wrap surgery to be done. For the rejection, I had a follow-up bronch on Monday and I am awaiting the results. If I remember I will update this with them. If I am clear, plans will start being made! [Update: I am still showing mild rejection, although less than last time - this makes sense because my Prograf (my main anti-rejection medication) levels have still been low. My treatment will again be I the steroid treatment. This is also good, in my opinion, because it means they didn't think an escalated type of treatment was necessary.]

For the Nissen, I am supposed to get a consult with the surgeon soon and I am hoping that surgery will follow fairly quickly. The recovery from the Nissen seems to vary a lot between patients. Although the surgery is done laparoscopically, I am hoping that the pain will be lessened by the fact that my chest is still numb from the belly button up to my collar bone.

Anyway, that's the deal with me right now. I am awaiting the endless possibilities of what my new normal could be.

Oh, and I almost forgot: Happy New Year y'all!

Photo Credit: Egg @ doctor,; Amazon boxes,; Yoga hands,; Belize,