I need to pull myself up out of a funk again, and remind myself why I need to stay positive and optimistic. Any help out there? I thought I was feeling okay, a little more winded that normal but you know I have ups and downs, peaks and valleys, so figured I was in a valley and I'd be back up next week right? Well not so much. Turns out I have pneumonia. I had a chest xray and bloodwork done yesterday in preparation for my pulmo appt. today, and both are in agreement with the diagnosis of pneumonia. He wanted to admit me, but said we could probably manage it outpatient since I'm not feeling bad (comparatively, I've felt much worse). So I'm on some really potent antibiotics and I'm supposed to call and go in if I feel worse at all or sound like I'm breathing any worse at all. Otherwise I can stay home and on my oxygen, which ruins my plans for the weekend and is really cramping my style.
The real blow, however, came toward the end of the doctor visit when he said that if the chemo type drugs don't start helping soon then maybe we need to start talking about transplant in the near future. I'm just not ready to go there, and I don't *feel* like I'm anywhere NEAR bad enough to think about transplant. The statistics for lung transplant recipients are not that great quite honestly. I feel more optimistic at this point taking my chances with this disease. Now that is subject to change if/when the disease progresses and my functioning is lessened, but for now I'm good. Sure there are plenty of things I can't do, but there are plenty more that I can, and I enjoy most of every day! I'm getting some good, quality time in with my kids and I don't take that for granted. It would be nice to walk around the block without becoming winded again, sure, but for now I *can* still walk around the block ya know?
You're the first one who knows how you feel. Don't let anyone talk you into a transplant. I just wish you would get a break. But your attitude amazes me. I admire it so much. More people need to be grateful for the things they have.
by RHolt (PM , CC ) on Wednesday June 4, 2008 @ 11:24 PM
I'm sorry about your disheartening pulmo visit... Some of your feelings about lung transplant are justified. But, I believe, in the grand scheme of things the statistics regarding lung transplant are not as bad as some may believe...
Yes -- life expectency ain't that grand... Nationally, there is about an 80% one-year survival rate -- about 50% five-year -- and between 10-20% out to ten-year... But generally, lung transplant isn't even an option until survival with a person's underlying condition is substantially less than that...
I have cystic fibrosis. I'd already outlived many life expectancies before I received my beautiful, new lungs -- and I plan to outlive many more... By no means is it a walk in the park -- and the wait and hope for new lungs is probably the most difficult part. But don't discount lung transplant -- there are an awful lot of us survivors out here.
I struggled breathing for almost 40 years... Ironically, I didn't even realize I was "struggling" -- it was just life to me -- I didn't know any better... It's been just over eight years and this breathin' stuff with "real" lungs blows my freakin' mind every freakin' day... I think about it constantly -- and I think about the beautiful girl who saved my life throughout the day, every day -- I can see her smile when I close my eyes...
I have a little website about my story, and hers -- it's at:
I hope you do well -- I hope your pulmonary function gets a little better and you don't have to consider lung transplant... But if you do, I hope you get what you need when you need it...
Pali! Look at the support you are receiving! God is awesome. I have come to adore you and will hope and pray your chemo kicks in and that your pnemonia clears up. You are such a beautiful soul and blessedly positive, stay that way, it is such a great healer. I wish there was more I could do than my words and prayer, but you do have those.
Thanks guys, for stopping by and leaving me some kind words to read. Steve, thank you especially for sharing the links to your stories, it is nice to hear from someone who has actually lived the fear I'm facing and made it out the other side.
by Palikari (PM , CC ) on Sunday June 8, 2008 @ 8:04 AM
Hey You!
You have my hero's name within your name -- that has to be a good sign!!!
I'm not saying your fears are not justified -- but you have to look at odds/percentages too... Yes, it's a big, scary, life threatening procedure -- but after a year, over 80% of us are still alive... It's scary -- but it's survivable... And the pain is bearable -- probably much more bearable than the panic that often hangs along with the inability to breathe...
You take care... If you have questions about lung transplant, I'm available -- I've experienced it from many angles -- I've stayed very active in our lung transplant support group and I've been very involved with organ donation policy/procedure. But, I'm also a patient who may or may not be telling you fact -- I'm telling you what I've observed and I'm not a medical professional... (Often, people like you and I are exposed to so very much in the medical world that we think we're medical professionals -- we're not, and I try to remember that from time to time!)
Many Blogstream members are there
already! Quotes from members: "It's like blog lite!" -- "I like the instant
gratification!" -- "Stop spectating, get in the game!"
If you have not joined in, you are really missing out!
I had a chest xray and bloodwork done yesterday in preparation for my pulmo appt. today, and both are in agreement with the diagnosis of pneumonia. He wanted to admit me, but said we could probably manage it outpatient since I'm not feeling bad (comparatively, I've felt much worse). So I'm on some really potent antibiotics and I'm supposed to call and go in if I feel worse at all or sound like I'm breathing any worse at all. Otherwise I can stay home and on my oxygen, which ruins my plans for the weekend and is really cramping my style. 
I'm just not ready to go there, and I don't *feel* like I'm anywhere NEAR bad enough to think about transplant. The statistics for lung transplant recipients are not that great quite honestly. I feel more optimistic at this point taking my chances with this disease. Now that is subject to change if/when the disease progresses and my functioning is lessened, but for now I'm good. Sure there are plenty of things I can't do, but there are plenty more that I can, and I enjoy most of every day! I'm getting some good, quality time in with my kids and I don't take that for granted. It would be nice to walk around the block without becoming winded again, sure, but for now I *can* still walk around the block ya know?
Bob H
Yes -- life expectency ain't that grand... Nationally, there is about an 80% one-year survival rate -- about 50% five-year -- and between 10-20% out to ten-year... But generally, lung transplant isn't even an option until survival with a person's underlying condition is substantially less than that...
I have cystic fibrosis. I'd already outlived many life expectancies before I received my beautiful, new lungs -- and I plan to outlive many more... By no means is it a walk in the park -- and the wait and hope for new lungs is probably the most difficult part. But don't discount lung transplant -- there are an awful lot of us survivors out here.
I struggled breathing for almost 40 years... Ironically, I didn't even realize I was "struggling" -- it was just life to me -- I didn't know any better... It's been just over eight years and this breathin' stuff with "real" lungs blows my freakin' mind every freakin' day... I think about it constantly -- and I think about the beautiful girl who saved my life throughout the day, every day -- I can see her smile when I close my eyes...
I have a little website about my story, and hers -- it's at:
www.ClimbingForKari.org
I also blog about organ donation at:
www.ReviveHope.com
I hope you do well -- I hope your pulmonary function gets a little better and you don't have to consider lung transplant... But if you do, I hope you get what you need when you need it...
Love,
Steve
Steve Ferkau
Chicago, IL
Look at the support you are receiving!
God is awesome.
I have come to adore you and will hope and pray your chemo kicks in and that your pnemonia clears up.
You are such a beautiful soul and blessedly positive, stay that way, it is such a great healer.
I wish there was more I could do than my words and prayer, but you do have those.
You have my hero's name within your name -- that has to be a good sign!!!
I'm not saying your fears are not justified -- but you have to look at odds/percentages too... Yes, it's a big, scary, life threatening procedure -- but after a year, over 80% of us are still alive... It's scary -- but it's survivable... And the pain is bearable -- probably much more bearable than the panic that often hangs along with the inability to breathe...
You take care... If you have questions about lung transplant, I'm available -- I've experienced it from many angles -- I've stayed very active in our lung transplant support group and I've been very involved with organ donation policy/procedure. But, I'm also a patient who may or may not be telling you fact -- I'm telling you what I've observed and I'm not a medical professional... (Often, people like you and I are exposed to so very much in the medical world that we think we're medical professionals -- we're not, and I try to remember that from time to time!)
Love,
Steve