Since June 19th I have been revved up and ready to go. To go where? I'm not quite sure, but I know I want to get there. Part of that feeling I know is related to medications I'm on and part is due to my personality. The hardest part now, however, is what to do?
I was working as an ultrasound tech only 2 days a week before I got my transplant, but it was more than not working at all. And now, I can't work at all for at least 3 months. Even then, it will be hard because I'll lose my Medicaid. And I know I would never earn enough just to cover co-pays without it. My healthcare coverage has become my priority, not going out and living. Every choice I make now has to go back to "what if I lose coverage". Granted, I would do transplant all over again, and it seems like a minor interference compared to not breathing-but it is hard to deal with.
I have felt so darn isolated since I can't work and don't live near anyone. People also have been going on living, doing things- I feel I'm missing out on. Again, I'm grateful to be here and be alive-but it is human nature to compare yourself to others. I know of at least 7 girls who are pregnant and expecting little bundles of joy. Plus 2 who just had them! I won't know that excitement. I'm not going to lie, I'm jealous. Jon and I were talking about this the other day, and when I say it out loud I realize I have been given a life-my own. Plus, my dogs are always a treasure =) I think any woman though would understand what I mean. I've been blessed that Jon is okay with what happens one way or another-he just wants me to be healthy and happy. Plus, right now I think he kind of enjoys not having ANOTHER person to care for.
On another note, I had clinic on Monday. This was an adventure! I think it was the nurse's first day-EVER! She seemed very lost and confused by almost everything I said. Since I felt like I knew the routine, it was almost comical to see her scramble. Everyone there seemed to be new too, and that kind of scared me. Why is everyone either leaving or getting fired? The good news was my numbers seemed stable again. We are adding a calcium channel blocker to lower my diastolic pressure and heart rate and changing my antidepressant. We also increased my AM dose of insulin so I'm not shooting myself up with a million units extra a day. Other than that, I'll have a bronch in 2 weeks and if that is ok I can start tapering down off the steroids! I'm pretty excited about this since I won't be so moody and my face won't be so puffy =)We also got to meet two elderly men who were getting I.V's in the same room, and each got one lung from the same donor. Pretty amazing. They were 2 weeks post-transplant, and the one guy who was 70 didn't look a day past 50! I was impressed! Although he was doing the 'narcotic head bob' and his wife would yell at him and say "Honey, pay attention we need to count how many meds you are on so when they quiz us we know!" LOL I love the elderly!
I think its nap time now, since I couldn't sleep due to a massive headache I had all night last night. I think its related to my evening walks and allergies, but man do I enjoy those walks! Hope everyone has a great rest of the week!
Wednesday, September 15, 2010
Tuesday, September 7, 2010
Let the new trend begin
This past weekend was amazing! I had so much going on, yet so much fun even with the lack of sleep. Thursday I had gone back to TGH for labs and to give a petty sputum. I say 'petty' because these days thats what a post-transplant CFer can give. We dropped my goodies off in Tampa and headed home. I was told to call at 12 if I hadn't heard from anyone about the results. So I didn't want to annoy and waited until 12:15 to call. But, I suppose I was early, and still annoying because I was told someone will call me back when they are done with clinic.
Five o'clock rolls around, and the coordinator calls me. Looks like I may be growing MRSA and my Prograf is a little high still. So he decides to call in Zyvock(not sure on spelling) and to lower my Prograf to 1mg in AM/PM. That's good news-maybe I won't be shaking so bad. MRSA isn't such good news, it takes a lot of hardcore antibiotics to kill it-and it wears me out. But we have to watch the sputum to see for sure if it grows anything, pray it doesn't, and start the meds anyway.
Well, sounds all fine and easy...but its 5pm and the Pharmacy says that I need prior authorization from BCBS to get this $18,000 drug. Understandable. But clinic is closed, no doctors there after 5 to sign. I decide the only thing to do is to call clinic first thing Friday AM and have them fax the prior-auth. Well, long story short we go back and forth between pharmacy and clinic, both saying they've done their part but no one really have done anything but point fingers. It's late now, 4:30 and its a holiday weekend. They aren't going to like me Saturday morning. I called urgent line at TGH, they called back in 15 minutes-REALLY? Is that all I had to do? Say that this is urgent? IT'S URGENT! The sooner I start my meds, the sooner I stop the bug! Well, he says there are no docs or people at BCBS during the weekend holiday and I'll have to wait until Tuesday(today) to see what my culture grows and we'll go from there.
BAM-Today, good news! My trip to Tampa was not completely a waste. I hoping to start a new trend beginning today. My Prograf level was good 11.3, my kidneys are recovering, and I DID NOT grow MRSA! It's my normal pseudomonus argenosia, the lovely beast-but not bad! This is the first week I haven't had to change something I'm doing. I'd LOVE to keep that up! I won't hold my breathe-even though I can..*wink wink*
Also, this past weekend was lots of fun. We had Grandpa and Janette come up and visit for Grandpa's big 80! What an achievement! I hope to one day have nearly as many stories and experiences as he does. That night we took them to Sky in Ocala-one of the best Asian Fusion restaurants I have ever been too. We hadn't been in 3 years-and I don't know why! We surprised him with Dustin being there too. It was great! He had been asking about Dust all weekend, and I kept it a secret...ME! I know, I was proud of me too!
Then, we woke up early to head to St.Augustine to see the Kennen family. We all met at Anastasia Island. It was Jon and I, Bob and Cheri, Tracy and Bobby, Brian and Rhonda, Jane, Trey, Regan, Justin and Zack. The weather was perfect. It was overcast but not cold or hot, and the water was just right. Poor Jon got burnt to a crisp...I was REALLY good with my sunscreen. It was hard because I use to be a sunbaby, but since transplant I can't really do that anymore.
This was also a huge day for me. My lungs and I hadn't been to the beach since transplant. And the salt air and my toes in my sand felt so much sweeter this time around. I could smell the salt. I could feel it, like really feel it. It was beautiful..a near religious experience. I pray my donor was there holding my hand, breathing in with me-and feeling my gratefulness for their gift. Soon I hope to know more about this mysterious Angel. Until then, I continue to feel their wind pushing me forward.
Five o'clock rolls around, and the coordinator calls me. Looks like I may be growing MRSA and my Prograf is a little high still. So he decides to call in Zyvock(not sure on spelling) and to lower my Prograf to 1mg in AM/PM. That's good news-maybe I won't be shaking so bad. MRSA isn't such good news, it takes a lot of hardcore antibiotics to kill it-and it wears me out. But we have to watch the sputum to see for sure if it grows anything, pray it doesn't, and start the meds anyway.
Well, sounds all fine and easy...but its 5pm and the Pharmacy says that I need prior authorization from BCBS to get this $18,000 drug. Understandable. But clinic is closed, no doctors there after 5 to sign. I decide the only thing to do is to call clinic first thing Friday AM and have them fax the prior-auth. Well, long story short we go back and forth between pharmacy and clinic, both saying they've done their part but no one really have done anything but point fingers. It's late now, 4:30 and its a holiday weekend. They aren't going to like me Saturday morning. I called urgent line at TGH, they called back in 15 minutes-REALLY? Is that all I had to do? Say that this is urgent? IT'S URGENT! The sooner I start my meds, the sooner I stop the bug! Well, he says there are no docs or people at BCBS during the weekend holiday and I'll have to wait until Tuesday(today) to see what my culture grows and we'll go from there.
BAM-Today, good news! My trip to Tampa was not completely a waste. I hoping to start a new trend beginning today. My Prograf level was good 11.3, my kidneys are recovering, and I DID NOT grow MRSA! It's my normal pseudomonus argenosia, the lovely beast-but not bad! This is the first week I haven't had to change something I'm doing. I'd LOVE to keep that up! I won't hold my breathe-even though I can..*wink wink*
Also, this past weekend was lots of fun. We had Grandpa and Janette come up and visit for Grandpa's big 80! What an achievement! I hope to one day have nearly as many stories and experiences as he does. That night we took them to Sky in Ocala-one of the best Asian Fusion restaurants I have ever been too. We hadn't been in 3 years-and I don't know why! We surprised him with Dustin being there too. It was great! He had been asking about Dust all weekend, and I kept it a secret...ME! I know, I was proud of me too!
Then, we woke up early to head to St.Augustine to see the Kennen family. We all met at Anastasia Island. It was Jon and I, Bob and Cheri, Tracy and Bobby, Brian and Rhonda, Jane, Trey, Regan, Justin and Zack. The weather was perfect. It was overcast but not cold or hot, and the water was just right. Poor Jon got burnt to a crisp...I was REALLY good with my sunscreen. It was hard because I use to be a sunbaby, but since transplant I can't really do that anymore.
This was also a huge day for me. My lungs and I hadn't been to the beach since transplant. And the salt air and my toes in my sand felt so much sweeter this time around. I could smell the salt. I could feel it, like really feel it. It was beautiful..a near religious experience. I pray my donor was there holding my hand, breathing in with me-and feeling my gratefulness for their gift. Soon I hope to know more about this mysterious Angel. Until then, I continue to feel their wind pushing me forward.
Wednesday, September 1, 2010
Worst Blogger Ever!
Ok, so I promised myself that I would write here at least once a week and at least right after clinic. But I failed! Sorry guys, life has gotten crazy lately.
Last week started off awesome. I was counting the days until my cousin Jenn and the boys would come, then I would go back to Jacksonville with them for a mini-vacay. One of the best parts was on Monday I was able to get my blood drawn locally instead of driving 2 hours for an hour visit, and turn around and come home.
So I did my bloodwork Monday, and cleaned Tuesday in hopes to "baby-proof" the home. That never seems to work however, as I don't find a plug-in air freshner fascinating, but a 18 month old does. The boys are awesome, and it usually takes a few times to remind them not to touch, but they get it in the end. Plus our huge $2 baby gate investment was a great idea! Works for our dogs too...lol.
So Wednesday the gang arrived, and I was really excited, but also worried. I had been tired lately, and couldn't really pinpoint why. As always, we blame it on my doing too much. I let it go. We went to J.J's for dinner that night with Jon, Jenn, and the boys. I also was having a bad BAD case of the Predinsone cranky-ass. The annoying part was I knew I was being ridiculous! I wanted Jon to stay home and finish his 'to-do' list. Selfish of me, because he wasn't feeling his finest either (we've both been super busy this past month-and it continues next). So after dinner we headed home and called it an early night. The next morning I had to finish packing and record a video for my mom's class (...7 times! lol)
This was my first time packing for an overnight trip since transplant-and there was SO VERY MUCH to remember. I had to make sure I had the bottles of meds that they may call me and change, my pillcase, my nebs,neb cups,tubing, and inhaled meds...my BP cuff, my thermometer, my PFT machine, my notebook, my insulin pens(and extra), my insulin needles,lancets, and monitor..oh, and can't forget the test strips. Plenty of antibacterial hand sanitizer, clothes, swimsuit, regular bathroom supplies...The list goes on and on. So sad! I was already a pretty heavy packer-but now, I need a suitcase for my meds only!
Morning came, we packed and headed out! I was really excited to get to Jacksonville! I was going to see my brother's new apartment, go swimming, go shopping, and hang with my family. The best part of it all-it was going to force me to rest, and stop being so OCD at my house. I had lost control! I was cleaning things 5-6 times-in a row! When we got there, I saw my bro's apartment-it was so cute! Perfect for him and his girlfriend...and a little bittersweet, seeing how he's grown into a young adult. We then went to Matt's work to give him the night with the boys so my cousin and I could go shopping sans kids. We got our shop on...for me, regretfully- long story.
By the time we got home, the boys were in bed and I was ready too. Matt had said Will was sounding kind of wheezy, so Jenn went and checked on him. Sure enough, he was more than wheezy-poor baby! He was gasping randomly for air, and when he'd cough he sounded like a barking seal. It was really scary. I immediately thought it sounded like croup. When I was babysitting Paigey years ago, she had gotten it, and I got sick right along with her. Rob stayed home from work that day and took care of us both. So Jenn decided to sleep in Will's room until the morning when we'd take him to the doc immediately. He woke up fine, not really coughing as severly, but a little cranky (I would be too after a night like he had had.)
The doc confirmed-it was Croup. Good. We have a diagnosis, but what do we do? She said a bunch of kids this time of year(due to school starting) are coming in with it, and to start him on a steriod and humidifier. (I told Jenn no way to that, get the nebs which you can sterizle and reuse with out worrying about any bacterias growing when its not in use). Next worry now...me. What am I supposed to do? I've been exposed-very exposed-to this. I was loving on the baby, holding him, kissing him...and now he's sick. I'm scared. I'm trying not to freak out, but I can't help it. One hand, I'm terribly worried about him, and want him to get better so he doesn't have to breathe like that. On the other hand, what if I start to breathe like that? My first time out of town since transplant and now I've got to tell my doctors I've been exposed to Croup. They so are going to think I'm a horrible patient. So I called them, and waited pretty much all afternoon for them to call me back. In the meantime, we went and found Will the cutest nebulizer ever! It was a cow, with a barn bag carrying case! Um, hello, where was the cute stuff when I was little?! Super cute! And he did really, really well with it too. I'm a proud auntie =)
We then decided, since we're waiting, and I'm probley going home early, we should head to Old Navy while we have the chance. Of course, as soon as I get there they call to tell me my worst fear. Yes, I have to go home and to stay away from the baby. UGH! My trip just started, I've already been exposed-this was utterly frustrating!
While waiting for Jon to come get me, we got to go to the pool for a bit and have some fun. Otherwise, I felt like my trip got cut unfairly (to Will and I) short.
When I got home Friday night, I found out I had a funeral to go to early the next morning. George Nash, a.k.a Chief. He was an awesome man. He is the father of Jon's boss, the main man at Nash. I learned a lot about him that day too. How he never graduated 8th grade, then built from the ground up a multi-million dollar contracting company from the floor up. Amazing. When we got home, my dad was almost done cleaning out my garage! I was so happy for this! This is a project I cannot tackle on my own, and Jon will put it off until we move again lol...It looks so nice, I want to hang out in there!
Flashforward to today. My prograf was through the roof, regardless that we've dropped it so many times. My kidneys are taking a hard hit. We've stopped the Lisinopril and the Prograf for now. And I got back for more blood work maybe tomorrow, maybe today. I say maybe today because I just called the doc about another matter. My nose, since yesterday, has not stopped running. Its a typical psuedomonis sinus infection..ya know, the green smelly. And I'm tired damnit. Real real tired. And now I'm frustated because this is NOT the weekend I want to be in the hospital. I have a lot of fun plans coming up. My grandpa is coming Friday, Saturday..and then Sunday we're going to Jax beaches with the Kennen family. I've been so looking forward to this. I'm not in the mood to be trapped in a dark hospital. Remember, I'm supposed to be getting better-not worse! So this is it, every year this time I will be doomed with sinus infections. Grr...Let's see what they call back and say, until then- I'll eat my lunch and pack my bags.
P.S- The doc's just called back, I can wait until tomorrow to see them =) I'm going to start Neo/Afrin and Sudafed, and got to try and give a sputum tomorrow. We'll see what goes down, please keep your fingers crossed that I wake up tomorrow morning and miraculously everything is better =) (fingers and toes that is!)
Last week started off awesome. I was counting the days until my cousin Jenn and the boys would come, then I would go back to Jacksonville with them for a mini-vacay. One of the best parts was on Monday I was able to get my blood drawn locally instead of driving 2 hours for an hour visit, and turn around and come home.
So I did my bloodwork Monday, and cleaned Tuesday in hopes to "baby-proof" the home. That never seems to work however, as I don't find a plug-in air freshner fascinating, but a 18 month old does. The boys are awesome, and it usually takes a few times to remind them not to touch, but they get it in the end. Plus our huge $2 baby gate investment was a great idea! Works for our dogs too...lol.
So Wednesday the gang arrived, and I was really excited, but also worried. I had been tired lately, and couldn't really pinpoint why. As always, we blame it on my doing too much. I let it go. We went to J.J's for dinner that night with Jon, Jenn, and the boys. I also was having a bad BAD case of the Predinsone cranky-ass. The annoying part was I knew I was being ridiculous! I wanted Jon to stay home and finish his 'to-do' list. Selfish of me, because he wasn't feeling his finest either (we've both been super busy this past month-and it continues next). So after dinner we headed home and called it an early night. The next morning I had to finish packing and record a video for my mom's class (...7 times! lol)
This was my first time packing for an overnight trip since transplant-and there was SO VERY MUCH to remember. I had to make sure I had the bottles of meds that they may call me and change, my pillcase, my nebs,neb cups,tubing, and inhaled meds...my BP cuff, my thermometer, my PFT machine, my notebook, my insulin pens(and extra), my insulin needles,lancets, and monitor..oh, and can't forget the test strips. Plenty of antibacterial hand sanitizer, clothes, swimsuit, regular bathroom supplies...The list goes on and on. So sad! I was already a pretty heavy packer-but now, I need a suitcase for my meds only!
Morning came, we packed and headed out! I was really excited to get to Jacksonville! I was going to see my brother's new apartment, go swimming, go shopping, and hang with my family. The best part of it all-it was going to force me to rest, and stop being so OCD at my house. I had lost control! I was cleaning things 5-6 times-in a row! When we got there, I saw my bro's apartment-it was so cute! Perfect for him and his girlfriend...and a little bittersweet, seeing how he's grown into a young adult. We then went to Matt's work to give him the night with the boys so my cousin and I could go shopping sans kids. We got our shop on...for me, regretfully- long story.
By the time we got home, the boys were in bed and I was ready too. Matt had said Will was sounding kind of wheezy, so Jenn went and checked on him. Sure enough, he was more than wheezy-poor baby! He was gasping randomly for air, and when he'd cough he sounded like a barking seal. It was really scary. I immediately thought it sounded like croup. When I was babysitting Paigey years ago, she had gotten it, and I got sick right along with her. Rob stayed home from work that day and took care of us both. So Jenn decided to sleep in Will's room until the morning when we'd take him to the doc immediately. He woke up fine, not really coughing as severly, but a little cranky (I would be too after a night like he had had.)
The doc confirmed-it was Croup. Good. We have a diagnosis, but what do we do? She said a bunch of kids this time of year(due to school starting) are coming in with it, and to start him on a steriod and humidifier. (I told Jenn no way to that, get the nebs which you can sterizle and reuse with out worrying about any bacterias growing when its not in use). Next worry now...me. What am I supposed to do? I've been exposed-very exposed-to this. I was loving on the baby, holding him, kissing him...and now he's sick. I'm scared. I'm trying not to freak out, but I can't help it. One hand, I'm terribly worried about him, and want him to get better so he doesn't have to breathe like that. On the other hand, what if I start to breathe like that? My first time out of town since transplant and now I've got to tell my doctors I've been exposed to Croup. They so are going to think I'm a horrible patient. So I called them, and waited pretty much all afternoon for them to call me back. In the meantime, we went and found Will the cutest nebulizer ever! It was a cow, with a barn bag carrying case! Um, hello, where was the cute stuff when I was little?! Super cute! And he did really, really well with it too. I'm a proud auntie =)
We then decided, since we're waiting, and I'm probley going home early, we should head to Old Navy while we have the chance. Of course, as soon as I get there they call to tell me my worst fear. Yes, I have to go home and to stay away from the baby. UGH! My trip just started, I've already been exposed-this was utterly frustrating!
While waiting for Jon to come get me, we got to go to the pool for a bit and have some fun. Otherwise, I felt like my trip got cut unfairly (to Will and I) short.
When I got home Friday night, I found out I had a funeral to go to early the next morning. George Nash, a.k.a Chief. He was an awesome man. He is the father of Jon's boss, the main man at Nash. I learned a lot about him that day too. How he never graduated 8th grade, then built from the ground up a multi-million dollar contracting company from the floor up. Amazing. When we got home, my dad was almost done cleaning out my garage! I was so happy for this! This is a project I cannot tackle on my own, and Jon will put it off until we move again lol...It looks so nice, I want to hang out in there!
Flashforward to today. My prograf was through the roof, regardless that we've dropped it so many times. My kidneys are taking a hard hit. We've stopped the Lisinopril and the Prograf for now. And I got back for more blood work maybe tomorrow, maybe today. I say maybe today because I just called the doc about another matter. My nose, since yesterday, has not stopped running. Its a typical psuedomonis sinus infection..ya know, the green smelly. And I'm tired damnit. Real real tired. And now I'm frustated because this is NOT the weekend I want to be in the hospital. I have a lot of fun plans coming up. My grandpa is coming Friday, Saturday..and then Sunday we're going to Jax beaches with the Kennen family. I've been so looking forward to this. I'm not in the mood to be trapped in a dark hospital. Remember, I'm supposed to be getting better-not worse! So this is it, every year this time I will be doomed with sinus infections. Grr...Let's see what they call back and say, until then- I'll eat my lunch and pack my bags.
P.S- The doc's just called back, I can wait until tomorrow to see them =) I'm going to start Neo/Afrin and Sudafed, and got to try and give a sputum tomorrow. We'll see what goes down, please keep your fingers crossed that I wake up tomorrow morning and miraculously everything is better =) (fingers and toes that is!)
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