Clinc Update

I had a clinic appointment yesterday, part of the grind. It was supposed to be the last on the weekly visits, but they screwed up and forgot to give me an IV so I have to go back next week. Then I get to only do every other week for 4 weeks! Wahoo! I was given the okay to drive too, since I'm getting off my patch. I can drive locally only for now, just to make sure I'm okay with it. They also moved some meds arounnd because this darn blood pressure isn't going down. Apparently, last week they failed to notice I was on 2 BP meds that wouldn't really change anything, so now we change it and wait for progress. My diabetes has gotten better under control too, even with me eating as much as I am now. (Finally the appetite is back!I even gained 3lbs since last week!) I take 14 units of Lantus in the morning and 7 units of Lantus at night. And if I feel like eating big, I add 3 of Novalog. Easy enough =) My PFTs were up just a little, because my predicted increased because my weight increased-and my PFTs stayed the same. Kind of confusing, but I get it. They explained this little cough I've had too. I have a weird little birth defect he thinks was irrated during the bronch. Where the bronchi split, I have a little pocket. Perfect for collecting anything. Its very little but its right where the nerves are, so it gets tickled if anything hits it, causing me to cough. I finally after a week actually coughed something up after clinic-I was so freaking excited to get it out-and it felt sooo good afterward!I'm also switch to Colliston instead of Tobi. I think Colli is better, though more expensive, and it helps open my share of costs. Tobi has been used on me foreve, so I was kind of worried that its not as effective. I'm hoping to get the E-flow, because mixing and time is a pain...not so much now, but if I ever go back to work. I'm lucky to have an awesome pharmacist in Tampa, she's been so patient with me and my wonderful insurance issues. LOL So, all in all, clinic went very well.
Afterward, we went to Ocala to get Jon's window switch fixed. He had tried on his own (as most men do) to fix it himself, but had ordered the wrong part twice so I made him go to the dealership. And lucky us, first try, it fit! And we didn't have to pay for labor because Jon switched it himself. Then, we headed back home...
Today we had the cable connected to the guest room finally. I felt so bad having people come stay here and help me, and have a lacklust guestroom. So unwelcoming! After they left, I let the dogs out in the backyard to run. Sarge hates having men other than Jon and my FIL in the house, he needed a run. What I didn't know, is the cable dude left the gate open, and Sarge and Henry got a much needed run-AROUND THE NEIGHBORHOOD! I panicked! It had been a good 5-6 minutes until I had noticed they weren't out there. I jumped in the car and stopped at every person I saw. The kid across the street, he's like 6, took forever telling me this story about how the dog barked at him and ran and the cockerspaniel followed...blah blah blah...HURRY UP KID! So finally, I took off and found them running the street behind our house. If you have ever seen Sarge run, he's about as fast-if not faster-than a greyhound. Henry was in tow. Happy to follow his brother to the end of the earth and back. They both crossed right in front of my car. Thank goodness Henry isn't the brightest, because I called his name and he stopped dead in his tracks, but I truly think Sarge couldn't hear me. I snatched that puppy up and threw him in the car to circle the neighborhood some more. I drove around everywhere, terrified of 2 things-1) Sarge was going to get dehydrated and black out and 2)I'd find him hit by a car in the road. The 2nd scared me the most. He's so fast, and has never been off a leash without us. He doesn't have fear of cars. I don't know what I would have done. Our little family would have been broken.
After searching for about 20 mintues, I had calmed a little and thought, "he's a very very smart dog, he knows where he's fed, maybe he went home". Sure enough, I drive by the house and there he is lying at the front door, tongue out and panting. He saw me pull up and you wouldv'e thought we had been seperated for years. He was crying, I was crying...He jumped in my lap while I was still in the car, hugging me. We were both soooo very happy! I don't think he'll ever go to far again. But if he does, he knows where he lives. Its the cars I worry about.
Anyways, everyone is home safe and sound now...I've got a few more things to do today and then I'm good to relax. And I can't wait-I get to drive to work tomorrow and see everyone! I'm beyond excited about that! Hope everyone's day is nice 'n' easy...with no dog chases!

Quick Update

Just thought I'd fill in so as not to lose the "blogging" routine =) My BP and sugars are down today. I have increased my long acting insulin, so now the frequency of short acting shots are decreasing! And I think the BP is down because I did SO much walking today...I wish I was able to walk around this much during the week, but it is SO hot I feel like my insides are cooking through the bottom of my sneakers! Happy too, because I realized that I went over 2 days without my pain patch (Fentynal) and had only used the oral meds 2 times then. Pretty cool! Anyhow, we have a LOT to do tomorrow, and I don't feel like sleep is going to be good tonight because I've been so wound up all day. Hope everyone is enjoying their weekend with someone they love, doing what they love, and breathing as nicely as I am.

PS-Please pray for two people tonight. One is my old neighbor's friend, who is 9 today. At his birthday party he had a seizure while swimming and was unconcious for 10 minutes. We pray he makes a full recovery, though no one knows now. And the second is very special to me-My mom's best friend, and like an aunt to me, Jean. Her boyfriend was found unconcious this morning on a popular biking trail. No one knows how long he was there or what had happened. He's in the ICU/Trauma unit right now being worked up. Pray for Jean and him, as she has found happiness in him, and what makes her happy makes me happy. He has not had it easy these past few months, and she's been his rock. My mom's as well when I was sick. So now, pray for her to have courage and strength and feel love through this endeavour. I love you Jean!! XOXO

My Island

Today has been kind of a bummer. Do not get me wrong, finding out yesterday that I didn't have any rejection was AWESOME news! But..today, I don't know if I'm experience survivor's guilt, or loneliness, or just too much time on my hands. I feel like I'm stuck on a island.
This island consists of TV, my bed, and my two dogs. It is way too hot outside to exercise or walk the dogs, and I'm beyond sick of TV...My dogs are fun, but guess what-I'm a clean freak...so as much fun as we have, I end up cleaning it all up after.
I clean as much as I'm allowed to(with my mask on, please don't panic) and I never reach or lift if I cannot or think its too much. I've gotten extra careful since the wire in my chest poking through is a consistant reminder of the fact that I've just had invasive surgery almost 7 weeks ago. I've also filed everything there could be to filed, I've made multiple checklists and completed all of them. Now what?
I cannot drive, and everyone I know works all day (like I wish I could) so no one is around to come over. And I feel awful saying "come over-play with me" lol...So I'm stuck on my island, waiting for Jon to get home. The driving issue I'm hoping will resolve real soon, as I've been down to taking my pain med once a day (wahoo!) and just using the Fentynal patch. I'm scared to give it up though. Really scared. If I give that up and I hurt, then I switch to meds, then I'll get stopped up, then I get the stomachaches-which means laxtives. See, I told you I have a pill to run all mechanical operations of my body! =)
I don't dare say I'm depressed, or don't feel loved. Because if anything its opposite. I'm so loved, and the only down side to the ones I love (or me-depending on how you look at it) is that I live VERY far away from them. It stinks. I don't miss Gainesville, I miss the people. I love Leesburg...and I love the people I've made friends with here-but I don't see them like I'd like too.
And my donor family. I'm having trouble coming to terms with some issues in a different way then I think most transplant patients do. I can't ever imagine that these lungs weren't mine. Yet I know they were someone else's. They helped someone else say "I love you" to someone, but I cannot connect it that way. And I feel guilty for not feeling more sadness for the donor. I do truly feel pain for the family, I've lost so many friends and family-I know how it hurts. And in a way, I think that the donor is okay now, so its ok not to feel too much. That the donor would prefer to not be the way they were before. Yet, I'm guessing-I know absoultely nothing of them. I almost wish I knew them before. I want to know what they liked, hated, did for fun. Did they have brothers and sisters? How old were they? What was their favorite food? Maybe I don't need to know that stuff too, because this is the next journey in the lung's life. This is where God feels they belong now. And as I've said before, and I mean with all my heart, is that I will do my best to carry the honor of the donor and try and make them and his/her family proud. I will do what ever it takes, I want them to know I am grateful.
I apologize for the rambling, but my thoughts have gotten so jumbled, because I'm not sure what I think anymore. I know I'm grateful. I know I love the donor family and my donor. I know I want to live life as much and great as possible. And I know I can love deeply and I know I'm ready to give it all.
This weekend is busy, which I love since my weekdays are a bore usually. Maybe getting some air and time with my hubby will help my mind calm down a bit. Until then, I'm going to go do a little praying, play with the dogs, and wait for my knight-in-shining armor to come give me a hug =)
PS-A few hours after writing this, I realized I was 2 days late on changing my Fentynal patch!! I also have only been taking my pain pill once a day since...Guess I'm doing better than I thought! WAHHHOOOO

I'm back-for real this time

Whoa! It has been forever since I've blogged, and so much has been going on. I've been home now since July 18th (the day after the golf tournament-which raised over $10,000). It has been so nice being able to sleep in my bed, eat my food, and play with my dogs. Little things have made me extraordinarily happy (i.e-getting to vaccum for the first time). LOL! My health has been surprising me everyday.
There are 2 numbers a C.F patients is told to focus on when we do our Pulmonary Functions Test (PFT)- the FEV1 and the FVC. The FVC represents the total amount you can blow out after the biggest breath in you can take. And the FEV1 (which is my favorite to watch) is the amount you can blow out in the first second of your FVC. This is measured by blowing into a spirometer and measured in liters. Ok, now that the lesson is over I can tell you that when I was pre-transplant, my FEV1 was only 0.21 L, pretty much how much oxygen capacity I had. Not even a liter. Then as of Tuesday when I did my PFTs again at the hospital, 6 weeks and 3 days later, I am at 1.97 L. AMAZING! Before transplant, I would dread PFTs because I would work so hard blowing out, and then cough up and be sore from it, only to produce incredibly low numbers. Now when I do PFTs, even when I feel I'm working hard, I'm not exhausted, I don't hurt and my numbers get higher every day! I still do breathing treatments everyday, and I have breathing exercise I do to expand the lungs muscle. I can't wait to see how far I can go!
Another thing I had done on Tuesday was a bronchoscopy. Doctor take a camera attached to the end of tube and looks around, then he takes a small piece of the lung to biopsy for rejection/infection. We're still waiting on results from that. My numbers from bloodwork seemed decent however, and the only adjustment made could be my blood pressure meds. That has been my newest battle. It is always high. I'm talking 140/100 and up! So we have been moving the meds around and hoping for a change soon. And I think the diabetes is starting to get undercontrol after several insulin adjustments, but I'm on it like a hawk. Sometimes I think I may be annoying because I am so insistant with getting the sugars under control and getting off a sliding scale, but I don't want to have to face kidney damage on top of everything else. One challenge that has been driving me nutso is I can't drive yet! Not until I'm off the pain meds (which each day is less and less). And I finally got the okay to go in the pool or bath (but no swimming-still healing inside).
One really nice thing about transplant is that I have seen the people in my life I really want around me. And everyone has been there that I've expected, and some that I haven't. I only wish I could drive to visit everyone, I'm just so darn far! I have to wait for Jon to get home in the evenings to go anywhere, or when I have a friend or family member come by. By the way, I love having my vistors =) It definately makes the day so much happier. It gets a little lonely, and I think my house is almost at it's maximum cleanliness!LOL
So, I apologize for putting you to the side my loving blogger-but I promise to return way more frequently, as my mind is a running like a hamster wheel these days and I got to spit it out somewhere!