Hey, everyone... I wanted to share my email (since so many of you offered your care and support over the past couple of weeks) that I sent to my friends and family today. Just think it sums up all the tests, etc. that I underwent and what is the next step for me. Thanks again for EVERYTHING!
Here it is:
I'm finally home after 14 days in lock-up. We got home late last night. I slept in today and it felt wonderful!
I feel better, actually, even though I didn't really know I was so sick to begin with. Interesting... maybe I do learn to breathe and live with lowering lung function and not always notice it until I get to feeling better and see what I've been missing. <img src="i/expressions/face-icon-small-smile.gif" border="0"> Either way, I'm feeling better and thank you to EVERYONE who sent cards, letters, emails, phone calls, etc. I cannot thank you enough. And, most importantly, THANK YOU for keeping me in your thoughts and prayers. I haven't been an inpatient in the hospital for 2 weeks since I was in high school, so it was a lot of adjusting and a whole bunch of faith that got me through. Plus, having felt worse when I was initially admitted (and for that first week) than I did when I came for my appointment was pretty rough. But, again, faith and prayer and the words and comforts from friends and family really got me through. THANK YOU.
My pulmonary function tests (PFTs), done on the day I was discharged were a bit disheartening. The first few I took were actually the SAME as the day I was admitted!!! I was shocked. After that, the numbers went up to what they were one week ago (about 6% increase from when I was admitted). For some reason, my lung capactiy plateued. I was not very happy with this, but my doc (back from vacation!) assured me this is what happens with CF... You don't always get back to where you were (and that is the nature of this disease). They can only try to "knock back" the infection so it doesn't keep destroying lung tissue. So, I feel confident they did knock it back, even though it isn't what it used to be. This is likely the least amount my numbers have ever jumped after a 2-week antibiotic course (I generally can expect an 8-12% increase after week 2 and they ALWAYS go up more from week 1.) Oh well...
On another note, the last several days have had some other interesting turns of event. My heart palpitations continued and even worsened as the days went by, still mostly recording "events" when I'd sleep. Finally, after a night of very little sleep because every time I'd move to my side the monitor would record a palpitation and I FELT them like crazy, they finally did a chest x-ray to make sure of the PICC line placement. They realized at that point that it was too far into my heart. So, the PICC team came in and pulled it out 4 cm. Immediately, the palpitations stopped and I have slept GREAT (with lots of naps) since! The monitor has still recorded a couple of "events" when I've been sleeping, but I never felt them and certainly am not able to make them happen anymore with positioning my body a certain way.
My cardiologist was extremely thorough and also had them do an ECHO of my heart just to make sure things were alright. Things checked out fine. He says I do have PVCs (heart palpitations), but so does everyone, and I am probably just more sensitive to mine due to an increased amount of adrenaline that I need to power my heart and lungs due to the CF. He said stress can also make you more sensitive (can't imagine a hospital can do that! LOL). Either way, not too concerning, though he'll do an ECHO every year now of my heart just to make sure my heart and lungs are cohabitating. He also told me I don't have to lay off caffeine, which is AWESOME and such a relief as one of the nurses here wouldn't give me caffeine one day cause she said with PVCs you can't have it.... Urgh! Needless to say, my cardiologist said coffee is fine. Woo-hoo!!!
My appetite stimulant has been nothing short of a miracle... I have gained back about 4 lbs in as many days! Amazing! I eat all the time and LOVE eating. I usually eat the normal breakfast and lunch and then come dinnertime I generally eat my first dinner around 5 and then a second bigger meal around 8! Its crazy. Plus, I snack all night. LOL. So, this is awesome. I cannot believe no one suggested it to me before. Brilliant. Anyway, not sure I'll stay on it, as it is a steroid and I've been researching it. It does have some side effects and things I may not want in the long-term. I figure now that I'm home I should be able to keep my appetite up with my lungs feeling better and some home-cooked goodness.... But, I can take it "as needed" and did have it filled today so I will keep it on hand for not-so-good days.
I've been given take-home oxygen for use with exercise. I am really excited to start using it when I jog at the gym. I put it on in pulmonary rehab the other day for the first time with my jog and it was amazing... truly amazing. I even said to the physiologist, "So THIS is how normal people feel when they run!!"... I could actually take a full breath. Again, strange how you don't know how bad it is until someone changes it for the better. I was amazed and hope it can help me jog further and longer (and maybe even outside when it cools off!!)... I guess some gyms don't allow people on O2 to use their facilities (liability issues, etc.), so I'm sure I'll have to look into this. I hope they'll let me use it. I also used it a bit in the car on the ride home through the mountains and it immediately decreased my heart rate and I felt better. I dont' think I'll wear it much when I'm just sitting around, but they said when I do feel short of breath, at least I'll have it in the house for use whenever I'd like.
Otherwise, lungs are feeling good. I think the asthma meds they have me on now are a step in the right direction. It adds an additional treatment day and night, but worth it if I feel better. I also may start doing some afternoon treatments when I can since the meds I'm on are way out of my system by nighttime if I only do morning and night. But, we'll see.
Again, thanks for all the support when I was in. I was in awesome hands, but know the hands of my friends and family were also lifting me up. Know every correspondence made me smile and kept me moving forward.
Here it is:
I'm finally home after 14 days in lock-up. We got home late last night. I slept in today and it felt wonderful!
I feel better, actually, even though I didn't really know I was so sick to begin with. Interesting... maybe I do learn to breathe and live with lowering lung function and not always notice it until I get to feeling better and see what I've been missing. <img src="i/expressions/face-icon-small-smile.gif" border="0"> Either way, I'm feeling better and thank you to EVERYONE who sent cards, letters, emails, phone calls, etc. I cannot thank you enough. And, most importantly, THANK YOU for keeping me in your thoughts and prayers. I haven't been an inpatient in the hospital for 2 weeks since I was in high school, so it was a lot of adjusting and a whole bunch of faith that got me through. Plus, having felt worse when I was initially admitted (and for that first week) than I did when I came for my appointment was pretty rough. But, again, faith and prayer and the words and comforts from friends and family really got me through. THANK YOU.
My pulmonary function tests (PFTs), done on the day I was discharged were a bit disheartening. The first few I took were actually the SAME as the day I was admitted!!! I was shocked. After that, the numbers went up to what they were one week ago (about 6% increase from when I was admitted). For some reason, my lung capactiy plateued. I was not very happy with this, but my doc (back from vacation!) assured me this is what happens with CF... You don't always get back to where you were (and that is the nature of this disease). They can only try to "knock back" the infection so it doesn't keep destroying lung tissue. So, I feel confident they did knock it back, even though it isn't what it used to be. This is likely the least amount my numbers have ever jumped after a 2-week antibiotic course (I generally can expect an 8-12% increase after week 2 and they ALWAYS go up more from week 1.) Oh well...
On another note, the last several days have had some other interesting turns of event. My heart palpitations continued and even worsened as the days went by, still mostly recording "events" when I'd sleep. Finally, after a night of very little sleep because every time I'd move to my side the monitor would record a palpitation and I FELT them like crazy, they finally did a chest x-ray to make sure of the PICC line placement. They realized at that point that it was too far into my heart. So, the PICC team came in and pulled it out 4 cm. Immediately, the palpitations stopped and I have slept GREAT (with lots of naps) since! The monitor has still recorded a couple of "events" when I've been sleeping, but I never felt them and certainly am not able to make them happen anymore with positioning my body a certain way.
My cardiologist was extremely thorough and also had them do an ECHO of my heart just to make sure things were alright. Things checked out fine. He says I do have PVCs (heart palpitations), but so does everyone, and I am probably just more sensitive to mine due to an increased amount of adrenaline that I need to power my heart and lungs due to the CF. He said stress can also make you more sensitive (can't imagine a hospital can do that! LOL). Either way, not too concerning, though he'll do an ECHO every year now of my heart just to make sure my heart and lungs are cohabitating. He also told me I don't have to lay off caffeine, which is AWESOME and such a relief as one of the nurses here wouldn't give me caffeine one day cause she said with PVCs you can't have it.... Urgh! Needless to say, my cardiologist said coffee is fine. Woo-hoo!!!
My appetite stimulant has been nothing short of a miracle... I have gained back about 4 lbs in as many days! Amazing! I eat all the time and LOVE eating. I usually eat the normal breakfast and lunch and then come dinnertime I generally eat my first dinner around 5 and then a second bigger meal around 8! Its crazy. Plus, I snack all night. LOL. So, this is awesome. I cannot believe no one suggested it to me before. Brilliant. Anyway, not sure I'll stay on it, as it is a steroid and I've been researching it. It does have some side effects and things I may not want in the long-term. I figure now that I'm home I should be able to keep my appetite up with my lungs feeling better and some home-cooked goodness.... But, I can take it "as needed" and did have it filled today so I will keep it on hand for not-so-good days.
I've been given take-home oxygen for use with exercise. I am really excited to start using it when I jog at the gym. I put it on in pulmonary rehab the other day for the first time with my jog and it was amazing... truly amazing. I even said to the physiologist, "So THIS is how normal people feel when they run!!"... I could actually take a full breath. Again, strange how you don't know how bad it is until someone changes it for the better. I was amazed and hope it can help me jog further and longer (and maybe even outside when it cools off!!)... I guess some gyms don't allow people on O2 to use their facilities (liability issues, etc.), so I'm sure I'll have to look into this. I hope they'll let me use it. I also used it a bit in the car on the ride home through the mountains and it immediately decreased my heart rate and I felt better. I dont' think I'll wear it much when I'm just sitting around, but they said when I do feel short of breath, at least I'll have it in the house for use whenever I'd like.
Otherwise, lungs are feeling good. I think the asthma meds they have me on now are a step in the right direction. It adds an additional treatment day and night, but worth it if I feel better. I also may start doing some afternoon treatments when I can since the meds I'm on are way out of my system by nighttime if I only do morning and night. But, we'll see.
Again, thanks for all the support when I was in. I was in awesome hands, but know the hands of my friends and family were also lifting me up. Know every correspondence made me smile and kept me moving forward.