Meet Lincoln & Leopold

Meet Lincoln and Leopold. Can you tell what they are? They were a gift to me from my sister's best friend. She is quite talented, as you can tell, she can make almot anything!! I love them, they are so cool! Thanks so much Shananan!!


Lincoln & Leopold and the nebs


Happy Lungs


Lincoln & Leopold and the Vest

Friends

Friends

Just call me a "Frequent Flyer"

So...I've landed myself back in Duke hospital due to some more blood episodes. But on a good note, again not nearly as much as before, only 2 TBP..phew. The docs wanted me to come in just for observation. So I came in thru the ER. Well its day two and I'm still here somewhat discouraged because there has been talk about keeping me here until my TX! I don't want that, I love the center for living!! The delimma is: aspargillis in my lungs, clots in my arms and my liver not being up to par to handle the meds.

I'll explain: One, my cultures have shown that I have aspargillis in my lungs. The medication to treat aspargillis is VERY hard on the liver and I have been on it before but was taken off it because my liver enzymes shot thru the roof. There is another med that can treat aspargillis but it is IV only, which leads me to the next road block--IV access. I don't have a central line in because of the cots in my arms. Both PICC lines had to be pulled due to clots. A port is not an option because of the TX surgery, docs don't want anything in the chest area. So the plan is to look to see if the clots are gone (the docs think not, its only been 2 weeks--but God can do anything!), if clots are not gone docs want to do a MRV which is an MRI that looks at blood vessels. The problem with that is I have a shunt inside me with surgical metal clips and when it was put in the docs told me I cannot have an MRI. So, yet another road block!

Please keep me in your prayers. I will keep you posted.

Friday Rehab

Yay, I made it through my first week of rehab!! Now I get a nice weekend t rest...I hope. Today was not to bad, I was a little tired because before P.R. Dad & I walked around clinic all morning. But I made it through. Got my chest PT, floor exercises, weights (which they increased--both weight & repititions!), bike (with increased intensity!) and then walking. I am tired, but good tired. I met a girl today who was post-op her double lung TX. She got hers on Spetember 9th, she was listed and only waited a week!! She looks good though, I thought. We swaped info.

Oh yeah, Dad & I got chic-fil-a for lunch (YUM!) since we were at clinic :) Dad & I are both hoping to sleep in tomorrow, we are both exhausted!!

New Record In Rehab!!

Today had a rough start, as I woke up at 4:15 am coughing up bright red blood. I sat on the edge of my bed and prayed please God let it stop and not be as much as before (at least 1 cups worth). Well God answered my prayer...it was only about 2 TBSP. :) I called the docs to let them know anyway. I was just told to hold the lovenox for today and still attend Pulm Rehab. Once I got going at the gym it wasn't so bad, my chest opended up and I wasn't so tight! I even broke my record! Today I was able to walk a mile and a quarter!!! I also did the stairs, weights, bike and floor exercises. After that Dad and I attended a lecture on scar mobilization. It dosen't sound that comfortable but it will help me not be so stiff after TX.

The diabetes appointment went well this morning. My sugars are still high due to the prednisone, no surprise there but I have an appointment with the pump trainer Monday at 3pm, she may make some changes to my insulin pump.

Tomorrow I have an appointment at 9am with pulmonary to have PFTs, ABGs and some other labs (antibody levels and C-peptide) drawn. The C-peptide is to see if my pancreas makes any insulin at all. Basically to see if my pancreas is functioning.

Wednesday the 29th I have another appointment with pulmonary, I will actually see the Doc and hopefully sign the papers to be listed!!! :)

Please pray I stay healthy and strong and keep getting stronger and no more blood episodes! Thanks for all the prayers, God hears and answers I know it!

3rd Day--Good day!

Today was a good day! Much better than yesterday at Pulmonary rehab. I was not as tired, I actually felt energized afterwards. I had the usual workout and then Dad and I had to attend a lecture on Breathing Retraining. It was short, more a demonstration than anything. But because CF has trained my brain to breath a certain way, once I have my new lungs I will have to retrain my breathing. I did get to see two girls post-tx and they looked awesome!! I hope I can recover as well as they can!!

I have an appointment tomorrow morning with the diabetes doctor and the off the P.R.

Again thanks to all who have been praying for my family and I. We are all doing well! My sister Kelly had her baby Sept 18 at 8:41am, 7lbs 3oz. He is precious, his name is Caradoc Irvin Persinger.

What a proud Big Sister.

2nd Day of Rehab

...oh goodness...they had me walking up and down steps (my Nemesis)...the end.

1st Full Day at Pulmonay Rehab

I had my first full day of Pulmonary Rehab today. I went from 12:30 to 3pm. Tomorrow will be a little longer because I have a lecture to attend. First I got chest PT, then floor and leg exercises for 45 minutes, next get break then I hit the stations. First station was walking, I had to walk 20 minutes. It doesn't sound like alot, but man when you haven't walked for a few months it's tough. But I did 10 laps in 20 minutes. Next I went to weights and weight machines. This was not to bad until they made me do squats..that about killed me!! LOL!! And finally they put me on the Nustep machine for 15 minutes. After that I was done. Overall it wasn't bad, I will just have to work up to my strength since I've been down so long.