New lifestyle

Today has been one great day! I’m feeling great, getting a little stronger. Kerry flew home this morning, so it’s just my mom and I. With the help of Siri we successfully navigated to a nail salon. We both had our nails done, boy did that make me feel more like a human. Being hospitalized for so long, I was way overdue! We came back to our hotel, parked the car walked across the street to the water front. There are a ton of boats to look at, especially yachts to buy. It was fun to look around and always dream! Ha ha. We also found some delicious sounding restaurants we would like to try.

I still can’t fathom my morning routine now. It has changed so much, for the good! I have to be up by 9 am. I take an oral medication called Tacrolimus it helps prevent rejection, it has to be taken at 9 am and 9 pm, and you have to be right on time taking it, because when you go to post transplant clinic they draw your blood and monitor your levels. Before I left the hospital I was given a daily journal. Within this journal I have to track all sorts of different things. When I go to post transplant clinic I have to take my journal with me, so Dr. Mulligan can look at all my numbers and make sure my new lungs aren’t heading towards rejection. So it’s very important I write every little piece of information down. Okay back to my “new” morning routine. I’m usually up by 8 am. The first thing I do is weigh myself. Weight is very important, your doctors do not want you loosing any weight, they want you gaining weight! If I keep gaining weight hopefully my peg tube will come out, meaning no more nightly feeds!! Next I check my temperature, followed by my blood pressure and pulse. After each measurement I write down my findings in my journal. Up next is home spirometry. Which is basically doing PFT’s at home. I have to do three consecutive PFT’s in a row and record the FEV1 level (which is how much air I can take in in one second) and FVC level (which is how much air I can push out in one second). Your FEV1 and FVC levels is what your transplant team really looks at. If your number start dropping, that means your lungs are going into rejection and need to be acted upon right away. After spirometry I have to check my blood sugar levels. Since I’m on so much prednisone right now my sugar levels are all crazy, I generally have to give myself 4 units of fast acting insulin, four times a day. I also have to record my blood sugar levels all four times in my journal. Next up I have to swallow 27 (including the Tacrolimus) different medications. Most of my medications are to help prevent rejection and antifungal infections in my new lungs. Last but not least I have to inhale 5 mls of sodium chloride. This is a standard protocol for transplant patients. It’s basically a small amount of salt water, it helps keep things moist in your lungs so you cough junk up. I still have some post surgical junk that needs to come up. It only takes maybe 10 minutes at the most to inhale, and I only have to do it for a month. I will admit it is pretty weird to do a nebulizer and not cough up think green junk! I used to cough up close to 8 oz of mucus in the morning. Still haven’t gotten used to that at all! Then my morning is complete! I can eat breakfast, get in the shower and begin my day! My “new” morning routine takes me all about 20 minutes at the most, compared to two hours before!!

Even though I feel stronger each day, I still require a lot of assistance. I can’t bend my arms up over my head, reach around behind me and getting out of a chair I can’t push using my arms, I have to use my legs to get up. So if a couch, chair or even a toilet is too low I need help getting up. I have to be very careful and not stretch my rib/chest cavity. If I do I run the risk of popping my stitches in my sternum, and that’s the last thing I want to do! I can’t push or pull on anything over 10 pounds for the next 6 weeks. Then I can slowly start using my arms again. I also require assistance in the shower, and getting dressed is a challenge too.

Now that we are out of the hospital we have to be back in clinic on Tuesday to follow up with a diabetes doctor. We will be seen by Dr. Wright at 10:15 She will be making sure I am on the correct insulin dose, and also making sure I am checking my blood sugar levels regularly. Then on Wednesday we will had back to the hospital for our first post transplant clinic visit. I have to have my blood drawn at 8 am (before I take my morning dose of Tracrolimus), followed by PFT’s (pulmonary lung function tests), chest X-rays and then we meet with Dr. Mulligan at 10:00. So basically we are on our own until Tuesday!

Tomorrow (Monday) I will find out when I start physical therapy. For the time being I have six different excises I do at home three times a day. The exercises range from balance activities to leg strengthening activities. My doctors want me to walk as much as I can, get out and use those new airbags!! Expand them, make them work!! Since my immune system is still knocked down, I can’t be around large groups of people yet. When I walk out our hotel door I always have a mask on for protection, and I carry hand sanitizer everywhere we go.

My mom and I had a good laugh this afternoon. Before we left our hotel room, I put all my mid afternoon medication in a baggie (just in case we were going to be out longer than expected), I also had to pack up my goodies to check my blood sugar, and my insulin pen. When my mom and I returned from our adventure, I decided to check my blood sugar in the car before we went for a walk. Well I thought I had everything. Checked my sugar level, wrote it in my journal, then went to look at my “cheat sheet” to see how much insulin to give myself, well, we forgot that. So needless to say mom ended up making a trip back up to the room. We are all still learning! Ha ha

If anyone has any questions please feel free to ask! I’m always open to new topics to talk about in our blogs! Would love to hear from you guys!

Well it’s time to go do my nightly routine, which is exactly the same as my morning routine! Hope everyone had a great weekend!

Until next time……..

~Jen~
“Just Breathe”