Home for a Rest

Well I am finally home.  We decided it didn't make sense to come home on Monday and do IV's for two days.  It would have been too much of a hassle.  I would have to get the meds delivered, pay all the medicine co-pays and then arrange for a nurse to come out to de-access the port when I was done.  So I didn't mind staying just two more days to avoid all of that.

Up All Night

It looks like I will be going home on Monday.  I could leave Friday if I want to, but I am still winded too easily.  Going home and taking care of everything myself will be too difficult at this point.  I am going to let the nurses take care of me so I can concentrate on relaxing and getting better.  My coughs are still a lot harder than they normally are.  I get stuck in them, turn red and feel like I am going to pass out.  I get light headed, the room gets spotty and my body feels shaky and tingly.  This happens to me sometimes, but right now since everything is moving, it is happening multiple times a day.  I go into coughing fits just from transferring from the bed to the wheelchair.  This is probably the worst part when I come in here, but it is a necessary evil.  All the mucus that has accumulated in my lungs is breaking free and plugging up my airways.  It makes it harder to breathe, but it makes it so that it can come out too.  Once I get most of it out, I shouldn't go into coughing fits so frequently and then hopefully start to feel a little better.  Plus I am not even bored here yet.  Believe it or not I have lots to do and have actually been busy.

In the Midnight Hour

The last couple days have been rough.  It has been harder to catch my breath even when I am just sitting on the couch.  My coughing has gotten a lot worse and I have been very congested.  I have just been taking it easy and trying to make it until Monday.  I called Lisa (she coordinates everything at the lung center) on Tuesday and told her that it was time to be admitted.  I suggested Monday so she said she would have all the paperwork ready and I could just go in.  I wanted to wait because Jason's family reunion is Saturday and I wanted to be able to go.  I have not been able to go the last two years because it just happens to fall right when I have to go in.  So I thought I would try and make this one. Well as you can see by the way I am talking in the past tense...my lungs had another idea.  Last night I started coughing up blood and Jason took me to the ER.

Proud to be an American

Hope everyone enjoyed their Fourth of July!  I personally did.  I surprisingly had a very good day yesterday.  I knew it was going to be a hot day so we came down to visit family and enjoy picnics and the fireworks.  We came very prepared.  I brought along my portable liquid oxygen and attached it to my electric wheelchair.  I also brought along my POC as a back up just in case I ran out of O2.  Luckily I ended up not needing any of it.  I got a fever half way through the day, but after I took some Motrin I felt alright.  I was comfortable for most of the day and was able to breathe.  I couldn't walk more than a couple feet without getting winded, but as long as I was in the chair I was fine.  That made for a good day and I am thankful for that.  Definitely happy I was able to enjoy the day with family.

Benefit Information

Like I mentioned before, my family is putting together a benefit for me to help with the expenses for my upcoming double lung transplant.  This is going to help with all the expenses that go along with getting this transplant.  The surgery itself is paid for by insurance, but we are not getting any help with any other expenses.  Right now I have to keep going back for follow ups and tests every three months.  When I have the surgery itself Jason has to live there while I am in the hospital.  After I am released I am going to have to travel to NYC once a week for appointments for about 10 to 12 weeks.  We have also heard of a few additional costs that might happen.  We have planned as much as we can, but there are always things that you don't expect and we want to be as ready as possible.  We went to the bank today and opened up a separate account just for the transplant.

Drowning on Dry Land

I am not doing good heath wise today.  I started getting fevers a few days ago so I called for an oral antibiotic to try and help with it.  Also I started my nebulized Tobi yesterday.  I take that 28 days on and then 28 days off.  When I start that it really takes a toll on me, especially if I am already having a hard time.  Today is pretty bad though.  I am on oxygen and it still hurts just to breathe.  My Albuterol is not helping me either.  I can normally take a puff or two of that and feel a little better.  Today it is not doing anything for me.

Fallin' & Flyin'

These last couple weeks have been great.  I have a lot of energy, breathing decent enough to do things, and very little aches and pains.  The last time I came home I didn't get this boost in health at all so I am really happy to have it.  I don't know how long this is going to last...I am sure not long...but I will take whatever I can get.  I am trying to complete a few projects that I normally don't have the energy to do, and visit with friends and family.