Hello World!
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Live Life then Give Life, Please be an Organ Donor.
Thursday, January 27, 2011
Monday, January 24, 2011
Snow Pictures
Hello World!
So with the last couple of snow storms I have suited up in full snow gear and trekked outside and played with the poochies. On one outing I took a couple photos...
So with the last couple of snow storms I have suited up in full snow gear and trekked outside and played with the poochies. On one outing I took a couple photos...
Tuck n Lucy
Tuck, Lucy, n Max are the Snow Bunnies of the Pack.
Lucy
Tuck will dig in the snow for ANYTHING!
Lucy pretty much hops through the snow, not really a run.
Max
Tuck chases the ball, Lucy chases Tuck, and although he isn't pictured Max then chases Lucy
My favorite picture, Tucker James!
Breathe Easy
Saturday, January 22, 2011
Good Appointment
Hello World!
Yesterday was a good day. I have a check-up appoint in Boston with my Transplant team. It went wonderful. Since it went so well I feel its ok to share my whole story... so over the summer I was have severe anxiety about death and dying and transplant. It was keeping me up at night and sometimes make me so anxious I didn't want to leave the house because I was afraid of getting hurt or lost somewhere while driving and MISS my transplant call. I lost it one night because my brother wanted to use my cell phone charger overnight, my phone had full charge so it really didn't matter. But I just lost it and had a break down at the thought of my cell phone dying and the transplant team not being able to get in touch with me. It was a disaster. It may sound crazy but it made ME crazy. I was on some anxiety medication already but my docs decided to change it because they thought maybe the old one isn't working anymore. So I was put on new meds, they worked wonders! I was able to sleep and go places without having a panic attack.
I ended up getting sick and needed to be hospitalized for an excerbation. While I was in the hospital this team of shrinks came to see me and changed my medication on me. They stopped the med that was working and put me on other stuff and it was just a nightmare. I left the hospital on different meds and not stable at all. I was slowly slipping into a pretty deep depression and my mood was way out of whack. I lost the drive or desire to do anything. I just wanted to stay in bed and sleep all day. Finally I had a talk with someone who flat out told me to "Get my shit together" because I wasn't myself and they didn't like who I was becoming. So I just stopped all my psych meds. I couldn't take it anymore. I know, I know, you shouldn't just stop meds and you should never just abrubtly stop psych meds. But I felt I had no choice. I felt no one was listening to me. So I quit them.
Well I told my CF doctor about the abrupt stop and everything. He is then obligated to inform my transplant team. So he did, which is fine, I know thats part of his job. But somewhere along the way information got screwed up and the Transplant team heard I quit ALL my meds. Well thats a huge red flag for them and a huge no-no. They called me about 2 weeks ago and say they were going to "deactivate" from the list until they could meet with me and talk further. I was in the hospital (this last trip) when I got that phone call. There was nothing I could do at that point.
So yesterday I was able to get an appointment with the Transplant team and discuss the situation. I was able to explain to them exactly what really happen. While they read me the riot act for just "quitting" meds they understood why I did it. I got a lecture on how important meds are post transplant and how you can NEVER miss a dose or rejection will happen. I know that, I'm not crazy. I would never go through this whole process and then quit taking LIFE SAVING pills. But I understood where they were coming from too. So at the end of the appointment the doctor looked at me and said, "Well I think we can reactivate you today." I was so thrilled.
I'm not sorry for what I did. It needed to be done. But I am sorry for the way I went about doing it. Next time anything like that happens I will just try harder to bug my doctors more and get them to see the problem. I have also gone back to the working anxiety medication and have been doing much better!
Breathe Easy
Yesterday was a good day. I have a check-up appoint in Boston with my Transplant team. It went wonderful. Since it went so well I feel its ok to share my whole story... so over the summer I was have severe anxiety about death and dying and transplant. It was keeping me up at night and sometimes make me so anxious I didn't want to leave the house because I was afraid of getting hurt or lost somewhere while driving and MISS my transplant call. I lost it one night because my brother wanted to use my cell phone charger overnight, my phone had full charge so it really didn't matter. But I just lost it and had a break down at the thought of my cell phone dying and the transplant team not being able to get in touch with me. It was a disaster. It may sound crazy but it made ME crazy. I was on some anxiety medication already but my docs decided to change it because they thought maybe the old one isn't working anymore. So I was put on new meds, they worked wonders! I was able to sleep and go places without having a panic attack.
I ended up getting sick and needed to be hospitalized for an excerbation. While I was in the hospital this team of shrinks came to see me and changed my medication on me. They stopped the med that was working and put me on other stuff and it was just a nightmare. I left the hospital on different meds and not stable at all. I was slowly slipping into a pretty deep depression and my mood was way out of whack. I lost the drive or desire to do anything. I just wanted to stay in bed and sleep all day. Finally I had a talk with someone who flat out told me to "Get my shit together" because I wasn't myself and they didn't like who I was becoming. So I just stopped all my psych meds. I couldn't take it anymore. I know, I know, you shouldn't just stop meds and you should never just abrubtly stop psych meds. But I felt I had no choice. I felt no one was listening to me. So I quit them.
Well I told my CF doctor about the abrupt stop and everything. He is then obligated to inform my transplant team. So he did, which is fine, I know thats part of his job. But somewhere along the way information got screwed up and the Transplant team heard I quit ALL my meds. Well thats a huge red flag for them and a huge no-no. They called me about 2 weeks ago and say they were going to "deactivate" from the list until they could meet with me and talk further. I was in the hospital (this last trip) when I got that phone call. There was nothing I could do at that point.
So yesterday I was able to get an appointment with the Transplant team and discuss the situation. I was able to explain to them exactly what really happen. While they read me the riot act for just "quitting" meds they understood why I did it. I got a lecture on how important meds are post transplant and how you can NEVER miss a dose or rejection will happen. I know that, I'm not crazy. I would never go through this whole process and then quit taking LIFE SAVING pills. But I understood where they were coming from too. So at the end of the appointment the doctor looked at me and said, "Well I think we can reactivate you today." I was so thrilled.
I'm not sorry for what I did. It needed to be done. But I am sorry for the way I went about doing it. Next time anything like that happens I will just try harder to bug my doctors more and get them to see the problem. I have also gone back to the working anxiety medication and have been doing much better!
Breathe Easy
Wednesday, January 19, 2011
Ouch!
Hello World!
Nothing overly exciting happening with me. I have one more day of IV antibiotics and then done!! Hopefully this time I'll stay out of the hospital for a while. Friday I have a check-up appointment with the Transplant Team. Hopefully it will be uneventful and everything will check-out just fine. Today I had to have blood drawn. After the visiting nurse was an hour late she poked me several times and missed everytime! She did get one vein once then bumped the needle and it popped out. Great!! I have really tiny veins that don't like to show themselves. Not good for blood draws.
On the home front Lucy will be getting spayed next week. I'm hoping after she is spayed maybe it will help with her dominace. Her tries very hard to be dominant right now to the smaller poochies. Her and Max get into little scuffles about the order in the pack. It needs to stop. Drives me crazy.
We have gotten lots of snow lately. Fun! I actually suited up in full snow gear and trekked around outside with Tucker! I haven't had energy or felt good enough to do that in years!! So awesome and I know Tucker loved having me out there. He enjoys being outside more when he has a person out there with him. Good Times.
Breathe Easy
Nothing overly exciting happening with me. I have one more day of IV antibiotics and then done!! Hopefully this time I'll stay out of the hospital for a while. Friday I have a check-up appointment with the Transplant Team. Hopefully it will be uneventful and everything will check-out just fine. Today I had to have blood drawn. After the visiting nurse was an hour late she poked me several times and missed everytime! She did get one vein once then bumped the needle and it popped out. Great!! I have really tiny veins that don't like to show themselves. Not good for blood draws.
On the home front Lucy will be getting spayed next week. I'm hoping after she is spayed maybe it will help with her dominace. Her tries very hard to be dominant right now to the smaller poochies. Her and Max get into little scuffles about the order in the pack. It needs to stop. Drives me crazy.
Lucy and Max snuggling, for now.
We have gotten lots of snow lately. Fun! I actually suited up in full snow gear and trekked around outside with Tucker! I haven't had energy or felt good enough to do that in years!! So awesome and I know Tucker loved having me out there. He enjoys being outside more when he has a person out there with him. Good Times.
Breathe Easy
Saturday, January 15, 2011
Shocked
Hello World!
Well I was going to have a happy post about getting out of the hospital and being back home. I then ran across this article... http://fb.me/A4fjiYRr
I have no words for how disgusted I am. I am incredibly thankful for my family and friends and doctors. I have an incredible team that would do anything, ANYTHING for me. Just shocked.
Breathe Easy
Well I was going to have a happy post about getting out of the hospital and being back home. I then ran across this article... http://fb.me/A4fjiYRr
I have no words for how disgusted I am. I am incredibly thankful for my family and friends and doctors. I have an incredible team that would do anything, ANYTHING for me. Just shocked.
Breathe Easy
Thursday, January 13, 2011
Extra Yum!
Hello World!
Well, I got the word and I am out of the hospital tomorrow!! Alright! I'm not sure my exact PFT numbers. Altough PFTs were weird. I always do 3 attempts. During my first attempt I took a deep breath and then got a sharp pain in my chest, so that one sucked. On my second attempt, when I pushed the air out I made this really weird noise. Haha almost like I was yelling. Not sure where that noise came from inside me haha. So that attempt was awkward. My third attempt was the only good, normal attempt. So I'm not sure the percentages but they were good enough to earn me a ticket out of here!! I will continue IV antibiotics for 5 more days at home. Not too shabby. I've done that before.
Something that made me smile: Tonight my respritory therapist was thing young guy. He was cute and chatty and friendly. It was nice. While chit-chatting I learned he has a borderc ollie name Bobby, EXTRA POINTS! So we talked about our dogs and it was lovely. I'll take him to go, does he make house calls?? haha. Go figure though, I have had this kind of creepy older guy as my RT for teh past 3 nights. I finally get a good one and I'm going home. Just my luck, haha. O well. I would rather go home than stay in the hospital just to see this guy.
So I can't wait for tomorrow. I'll get to see my pack! I miss Tucker the most. My mom said he has been wild while I'm gone. Probably because of the lack of play time. So I know he'll be excited to see me. And we are going to romp in the snow. I need a pick of the boy in the snow this winter. Maybe I'll try getting a video of his crazyness. He does love the snow. It the simple things in life that make it all worth it in the end.
Breathe Easy
Well, I got the word and I am out of the hospital tomorrow!! Alright! I'm not sure my exact PFT numbers. Altough PFTs were weird. I always do 3 attempts. During my first attempt I took a deep breath and then got a sharp pain in my chest, so that one sucked. On my second attempt, when I pushed the air out I made this really weird noise. Haha almost like I was yelling. Not sure where that noise came from inside me haha. So that attempt was awkward. My third attempt was the only good, normal attempt. So I'm not sure the percentages but they were good enough to earn me a ticket out of here!! I will continue IV antibiotics for 5 more days at home. Not too shabby. I've done that before.
Something that made me smile: Tonight my respritory therapist was thing young guy. He was cute and chatty and friendly. It was nice. While chit-chatting I learned he has a borderc ollie name Bobby, EXTRA POINTS! So we talked about our dogs and it was lovely. I'll take him to go, does he make house calls?? haha. Go figure though, I have had this kind of creepy older guy as my RT for teh past 3 nights. I finally get a good one and I'm going home. Just my luck, haha. O well. I would rather go home than stay in the hospital just to see this guy.
So I can't wait for tomorrow. I'll get to see my pack! I miss Tucker the most. My mom said he has been wild while I'm gone. Probably because of the lack of play time. So I know he'll be excited to see me. And we are going to romp in the snow. I need a pick of the boy in the snow this winter. Maybe I'll try getting a video of his crazyness. He does love the snow. It the simple things in life that make it all worth it in the end.
Winter of '08-'09
Winter of '09-'10
Breathe Easy
Tuesday, January 11, 2011
Still Captive
Hello World!
Well I'm still in the hospital. Day 6. Feeling a little better. Breathing is definetly better. Headaches are gone, thank God! I hate having headaches. My turn around hasn't been as quick as it usually is. Which is a little discouraging. I'm hoping this is just slow because of whatever the bugs were that I caught. Sadly though I think it might be the new usual. It might just take me longer to rebound from an illness. I've been in the hospital more times in the past few months than usual as well. Scary. I'm hoping things turn around and I don't have to be in the hospital every couple of weeks. Thats no way to live. It would be wonderful if I would just get that Transplant call. I could use those new lungs!! Well this is just a short blurb. I don't have much to share. Still truckin' along on the road of recovery. No idea when I may get out of here yet either. So just resting up and getting better as fast as possible. Thanks to everyone who wished me well and said prayers. All those are greatly appreciated! Much love to all of you!
Breathe Easy
Well I'm still in the hospital. Day 6. Feeling a little better. Breathing is definetly better. Headaches are gone, thank God! I hate having headaches. My turn around hasn't been as quick as it usually is. Which is a little discouraging. I'm hoping this is just slow because of whatever the bugs were that I caught. Sadly though I think it might be the new usual. It might just take me longer to rebound from an illness. I've been in the hospital more times in the past few months than usual as well. Scary. I'm hoping things turn around and I don't have to be in the hospital every couple of weeks. Thats no way to live. It would be wonderful if I would just get that Transplant call. I could use those new lungs!! Well this is just a short blurb. I don't have much to share. Still truckin' along on the road of recovery. No idea when I may get out of here yet either. So just resting up and getting better as fast as possible. Thanks to everyone who wished me well and said prayers. All those are greatly appreciated! Much love to all of you!
Breathe Easy
Sunday, January 9, 2011
Tucker James
Hello World!
So I'm still in the hospital. I miss my pup. So I decided to blog just about him tonight!
His name is Tucker James. He is a purebred Border Collie. I got him from a breeder for my 23rd birthday! He was born December 5, 2008! He came to live with me February 9, 2009. He is my baby!
So I'm still in the hospital. I miss my pup. So I decided to blog just about him tonight!
His name is Tucker James. He is a purebred Border Collie. I got him from a breeder for my 23rd birthday! He was born December 5, 2008! He came to live with me February 9, 2009. He is my baby!
Tucker's first night with me!
Tucky's first real car ride (other than the trip home)!
So cute!!
Playing with his best friend Max!
Tuck with his first frisbee. Was able to catch it in the air at 3 months!
Graduated Puppy Basic Training Class!
Tucker's first swim in the lake!!!
His first boat ride!!!
Tucker passed his Canine Good Citizen test!!
Someone gauged his face while wrestling. Boys!
My baby baby! He is so handsome!!
Breathe Easy
Friday, January 7, 2011
Hospital Again
Hello World!
So I'm back in the hospital. I was admitted last night. They did another chest x-ray to see about the pneumonia. They also started the IV medications right away. I'm taking Tobramycin, Vancomycin and Meropenum. I'm actually allergic to the Vancomycin. I get "redman's syndrome," Which makes me itchy all over and get red bumps like hives. And then my throat and mouth swell, WONDERFUL! haha. So they have to drip the vanco in extra slow and I have to take benadryl before. It seems to works and keep my body in check.
Well I woke up this morning, well kind of woke up, feeling awful! I didn't get much sleep last night. Lots of coughing and tossing and turning. I also had some serious night sweats. So when morning hit my whole ached and I was incredibly tired. My chest hurt, my back hurt, my neck hurt. Aren't I suppose to feel better here? haha. I spent most of the day drugged by benadryl, which makes me very sleepy. I have actually fallen asleep mid conversation with the doctor while on benadryl. Ha. I managed to be awke to eat lunch and dinner. Slept through breakfast. It has felt like a long day.
O and one other thing. This afternoon when my nurse can to hook me up to my fluids. She makes the comment that all the Alcohol wipes had to be recalled because the cantained bacteria on them! Whaaat!?!? So the wipe you just used to "sterelize" my port could be contaminated iwth bacteria!? Great. So hopefully nothing developes in the next fews days and I don't have any new bacteria infections. That is pretty much the last thing I need.
Breathe Easy
So I'm back in the hospital. I was admitted last night. They did another chest x-ray to see about the pneumonia. They also started the IV medications right away. I'm taking Tobramycin, Vancomycin and Meropenum. I'm actually allergic to the Vancomycin. I get "redman's syndrome," Which makes me itchy all over and get red bumps like hives. And then my throat and mouth swell, WONDERFUL! haha. So they have to drip the vanco in extra slow and I have to take benadryl before. It seems to works and keep my body in check.
Well I woke up this morning, well kind of woke up, feeling awful! I didn't get much sleep last night. Lots of coughing and tossing and turning. I also had some serious night sweats. So when morning hit my whole ached and I was incredibly tired. My chest hurt, my back hurt, my neck hurt. Aren't I suppose to feel better here? haha. I spent most of the day drugged by benadryl, which makes me very sleepy. I have actually fallen asleep mid conversation with the doctor while on benadryl. Ha. I managed to be awke to eat lunch and dinner. Slept through breakfast. It has felt like a long day.
O and one other thing. This afternoon when my nurse can to hook me up to my fluids. She makes the comment that all the Alcohol wipes had to be recalled because the cantained bacteria on them! Whaaat!?!? So the wipe you just used to "sterelize" my port could be contaminated iwth bacteria!? Great. So hopefully nothing developes in the next fews days and I don't have any new bacteria infections. That is pretty much the last thing I need.
Breathe Easy
Monday, January 3, 2011
Check-Up
Hello World!
So I am feeling better than my last post, I guess. I really just have different symptoms haha. The incredible back pain I had has passed, Thank God!! Although I have coughed up blood for the past 2 days. I have also had incredible headaches for a few days now. Its not my sinuses but instead feels like my head is being squished in a vice grip! I am short of breath with pretty much everything I do!! That is probably the thing I hate the most. Being short of breath just makes it so I can't do anything and everything takes so much more effort than it should. Sucky!!
I got an appointment today, With my doctor, thank God, because the one I saw on friday in Urgent Care didn't have a clue what to do with me. I always feel so much better when I can see or even just talk to my CF doctor because I have never a a symptom that they haven't seen before. So they have answer for what to do 9.5 out of 10 times! Haha.
But during my appointment I had an elevated heart rate, which means my little ticker is working harder than it needs too! My blood pressure was also high, for me anyway. My PFTs tanked! Which sucked. They went from 38% to 27% in just 3 weeks. Thats a hefty drop. And I have lost 6lbs in the past 3 weeks. Yikes!I had chest x-ray done last Thursday, and we reviewed it. Wow to I have bad posture, haha. And I saw I have a very slight case of scoliosis. DAMN! haha. I need to sit up straighter.
After reviewing the x-ray and going over all my symptoms it was decided I am probably in the first stages of pneumonia. Wonderful! Haha. So I was put on Levaquin a couple days ago and My doctor wants to give it a couple more days to see if it helps. If I'm still feeling crummy in a few days, off to the hospital I go for some IV medication. Hopfully the antibiotic does the trick!
Breathe Easy
So I am feeling better than my last post, I guess. I really just have different symptoms haha. The incredible back pain I had has passed, Thank God!! Although I have coughed up blood for the past 2 days. I have also had incredible headaches for a few days now. Its not my sinuses but instead feels like my head is being squished in a vice grip! I am short of breath with pretty much everything I do!! That is probably the thing I hate the most. Being short of breath just makes it so I can't do anything and everything takes so much more effort than it should. Sucky!!
I got an appointment today, With my doctor, thank God, because the one I saw on friday in Urgent Care didn't have a clue what to do with me. I always feel so much better when I can see or even just talk to my CF doctor because I have never a a symptom that they haven't seen before. So they have answer for what to do 9.5 out of 10 times! Haha.
But during my appointment I had an elevated heart rate, which means my little ticker is working harder than it needs too! My blood pressure was also high, for me anyway. My PFTs tanked! Which sucked. They went from 38% to 27% in just 3 weeks. Thats a hefty drop. And I have lost 6lbs in the past 3 weeks. Yikes!I had chest x-ray done last Thursday, and we reviewed it. Wow to I have bad posture, haha. And I saw I have a very slight case of scoliosis. DAMN! haha. I need to sit up straighter.
After reviewing the x-ray and going over all my symptoms it was decided I am probably in the first stages of pneumonia. Wonderful! Haha. So I was put on Levaquin a couple days ago and My doctor wants to give it a couple more days to see if it helps. If I'm still feeling crummy in a few days, off to the hospital I go for some IV medication. Hopfully the antibiotic does the trick!
Breathe Easy
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