Friday, June 29, 2012

Transplant Clinic

Well I FINALLY had my transplant clinic appointment that I had to cancel back in February do to insurance issues.  Looks like everything is stable, but they want to present my case before August 1st to the team.  So that means I need to get a few tests done prior to that:

24 hour pH probe - test the stomach for acid re-flux
ABG - arterial blood gas - test the gasses in the blood
6 minute walk test - see how far I can walk

I also have to get another MRI of my pancreas done, but that can wait till August.  I also need another echo-cardiogram and regular blood work done in August.

We scheduled everything today before I left so I won't forget.  Hopefully they won't have any issues listing me and I can be put on the in-active list until I need to be actively listed.

It was all very surreal again today.  Talking about lung transplants and tests and my case being presented to the doctors.  I don't feel like I need a transplant right now so it seems so odd to be having this all done.  Its good though, I know that and I would rather have this worked up and only need to get some tests re-done (like CT, ABG, PFTs, 6MWT and blood work) every 6 - 12 months.  But to be talking about ripping my chest open to take out these wretched airbags and replacing them with ones that might actually work....well....its weird.


Wednesday, June 20, 2012

Everything Happens for a Reason?


Tonight in class I found out that I was awarded a research fellowship!  It is with my current professor for the fall and spring terms of this upcoming school year.  I can't tell you how absolutely STOKED I am about this! My professor told me about it in class tonight.  I have not gotten any official correspondence yet, but the names are sent to the professor for approval so he showed me the email and it is ME!  If I had decided to apply for that job AND gotten it then I would be screwed.  So everything works out in the end.

Here is the description:

Graduate Research Assistantships are designed to link a graduate student with a faculty member on a meaningful research project.  During the assistantship period, the graduate research assistant will work directly with a faculty member on a project, which may lead to a presentation at a conference, a joint publication, or other significant professional activity.  The assistantships are awarded to students who are fully admitted into a master’s degree program.  They are intended to encourage and assist superior students in pursuing their course of graduate study; to provide students with professional development opportunities, and to provide support for faculty research, scholarship, and creative activities.  The assistantships are competitive and are based on the requirements listed below.  The assistantship includes 10 hours of work per week at $12 an hour in the fall and spring semesters when classes are in session.  Assistants receive full tuition remission for fall and spring semesters when classes are in session, except for consortia, directed studies and theses courses.  The student is responsible for all associated course fees.

Sunday, June 17, 2012

Decision Made

Well as much as I was thinking that Wayne Gretsky was correct when he said "you miss 100% of the shots you never take", I had to accept the realization that I just should not apply for the job.

Believe me, I would love to.  But the truth is, I am not the type of person to just work somewhere for 3 months and then quit.  Even if I hate it I will stay much longer than needed.  If I were to get sick again and need to stop in 3 or even 6 months I would feel obligated to work twice as long and end up much sicker than I am now.

So for me, the choice to bypass this opportunity is the right one.  I can finish school without any worries.  I can concentrate on my health.  And in 18 months if they are still hiring or hiring again I can apply and see how it goes.  Even if I don't have my transplant by then.  But at least I can give it my all at that point and not have to juggle school, full time work and a family.

Its a tough choice but it had to be made.  I remember how long I struggled on deciding to stop working 30 months ago.  I struggled for over a year with the choice before finally agreeing that it was worth my while to do it.  I don't think I have that kind of leeway anymore with my health.

Oh goes on eh?

Thursday, June 14, 2012

Big Decision to Make

Today I decided to check out the design job scene online.  And I found a job I think I would love.  And they are hiring.  And I could finish my NCIDQ paperwork and actually get licensed!  (now to actually FIND the paperwork I started when I still lived in PA)

But what should I do? 

You all have seen me complain and whine about how much I miss working on here numerous times.  I would LOVE to go back to work!  I know I couldn't do it for years but maybe 12-24 months?  Just enough to get some money saved up to keep us from drowning when I get transplanted.  

I spoke with a friend who went from SSDI to working while on Medicare and I wouldn't lose my Medicare, just my SSDI which I could obviously live without if I was working again.  And I would be able to get back on it fairly easy since I wouldn't be taking more than 36 months off from payments.

But what do I do about life?  And school?  And volunteering?  And Major (our dog)?  And my health?

I remember that when I worked I had no life.  I couldn't see friends on weekends because I was so tired from working all week.  But I don't have many friends up here anyway and we stay home a lot on the weekends as it is. 

School I could put on hold if I wanted to.  Or just take one class at a time. I think I could handle it.  I have 6 years to complete the masters program and I know I won't be working for 5 years so I could complete it after stopping work again.  Am I OK with that?  I think so.

Volunteering would obviously have to come to an end.  I could deal with that.  I could always start up again when I stopped working again.

Major we could put in doggy day camp.  It wouldn't be too bad and he loves it there anyway.

Health....hmmmmm....that is a tough one.  I would still need to get IVs every few months just like now, but it would be more difficult to do when I am working 40+ hours a week.  I was getting sick all the time when I worked and was down to 4 days a week.  I doubt a new company is going to hire me for only 4 days a week.  Even if I did put the full 40 hours in.  

There is just so much to think about.  Should I send in my resume and just see if I even get a call back?  But if I do get a phone call, do I tell them I am unsure of what I want to do?  So so so so so much to think about!  

Wednesday, June 6, 2012

Pain Update and TALANA'S NEW LUNGS

Amazingly and wonderfully the pain went away Sunday morning.  I coughed up what felt like oodles of goo and wham pain was gone!

I shall take it!

Except now I am beck to goo filled but hey no pain so its a win!

Annnnnnnnnnnnnnnnnnnnnnnnnnnnd my bloggy and RL friend DayDee is in surgery RIGHT NOW getting a new set of shiny pink healthy lungs!!

Prayer and good thoughts to both Tally's family and the donors.  Thanks for saying yes to organ donation.

Go Tally!!!!!!!!!!!!!!!!

Saturday, June 2, 2012

PICC removed - Last Week

I just realized I didn't update after having my PICC line pulled!  My bad!

Well things didn't change at all from the week I last posted to when they pulled the line.

Literally....1.28L to 1.28L.  I can say I have NEVER had an identical reading before!  Maybe .01 or .02 off but never the same!  I am one thing for sure - consistently inconsistent!

So they pulled my line and I feel great!

Or I should say felt great till last night.  I started having upper left lobe pain around 11pm last night.  It felt kinda like pain I had before a month or so ago.  It went away eventually.  But last night's started to go up my neck and into my shoulder.  And it was painful to rotate my arm.  I took some Motrin and went to bed.  Could be pleurisy, and I think it may have been.

I woke up to no pain in my upper left lobe but now a pressing pain across the front of my chest, under my boobs.  Its constant but is worse with inhalations.  Again this is something I have experienced before so I am not worried.  However, when P and I went to the food store I was wicked SOB and coughing like mad.  I am also full of gunk.  Its thick and regular color though.  Might just be an infection pocket that has moved.  I am going to see how tomorrow is and if I don't feel better I will be calling the doctor's office on Monday.  I have some Cipro lying around I can take if need be.

This is 10 days off of IVs and I might need Cipro already.  Really CF?