Question for Julie...

[ladybug]

Hi!

Just wondering how Mark is doing with his lung pain? What ever came of the x-ray that showed the progressive worstening? Has he been able to get more rest and is it helping?

Anyway, I hope he is doing better.... (And, I apologize if you've already posted an update somewhere... I couldn't find it.)

 

[ladybug]

Hi!

Just wondering how Mark is doing with his lung pain? What ever came of the x-ray that showed the progressive worstening? Has he been able to get more rest and is it helping?

Anyway, I hope he is doing better.... (And, I apologize if you've already posted an update somewhere... I couldn't find it.)

 

[ladybug]

Hi!

Just wondering how Mark is doing with his lung pain? What ever came of the x-ray that showed the progressive worstening? Has he been able to get more rest and is it helping?

Anyway, I hope he is doing better.... (And, I apologize if you've already posted an update somewhere... I couldn't find it.)

 

[julie]

I didn't post an update anywhere, thanks for asking <img src="i/expressions/face-icon-small-smile.gif" border="0">

He was in the ER last weekend, Saturday night. He was just having a hard time catching his breath.

His 02 was 90-93 while in the ER not bad, but he's usually at 99 so that's a chnge for him. THey gave him an albuterol neb treatment and that helped a lot. THey also put him on azithromycin every day 250mg, 10 days worth of Cipro, 5 days worth of prednisone and continue on the Tobi every other month and continue with the pulmozyme.

We haven't heard anything major on the xray, and the ER doc consulted with a pulmo and they said it's pretty standard CF looking lungs (wahtever that means). He has an appt. with the CF clinic on March 19 so they can compare this new xray to older ones, and be more specific with us.

He's feeling a bit better after all the meds, but still run down (he says). I think we might be nearing the time for his first IV meds. Kind of scary, but kind of necessary if it gets to that point. He had mentioned a while back he'd like to look into some type of home healthcare for that, and then suddenly he changed his mind and said he wants to keep home home, and IV's in the hospital. He doesn't want to dread coming home like he dreads going to the medical appointments. I can certainly understand, although I think home IVs (if an option) would be much better for him, and the entire familiy. But I guess we'll see when the time comes.

 

[julie]

I didn't post an update anywhere, thanks for asking <img src="i/expressions/face-icon-small-smile.gif" border="0">

He was in the ER last weekend, Saturday night. He was just having a hard time catching his breath.

His 02 was 90-93 while in the ER not bad, but he's usually at 99 so that's a chnge for him. THey gave him an albuterol neb treatment and that helped a lot. THey also put him on azithromycin every day 250mg, 10 days worth of Cipro, 5 days worth of prednisone and continue on the Tobi every other month and continue with the pulmozyme.

We haven't heard anything major on the xray, and the ER doc consulted with a pulmo and they said it's pretty standard CF looking lungs (wahtever that means). He has an appt. with the CF clinic on March 19 so they can compare this new xray to older ones, and be more specific with us.

He's feeling a bit better after all the meds, but still run down (he says). I think we might be nearing the time for his first IV meds. Kind of scary, but kind of necessary if it gets to that point. He had mentioned a while back he'd like to look into some type of home healthcare for that, and then suddenly he changed his mind and said he wants to keep home home, and IV's in the hospital. He doesn't want to dread coming home like he dreads going to the medical appointments. I can certainly understand, although I think home IVs (if an option) would be much better for him, and the entire familiy. But I guess we'll see when the time comes.

 

[julie]

I didn't post an update anywhere, thanks for asking <img src="i/expressions/face-icon-small-smile.gif" border="0">

He was in the ER last weekend, Saturday night. He was just having a hard time catching his breath.

His 02 was 90-93 while in the ER not bad, but he's usually at 99 so that's a chnge for him. THey gave him an albuterol neb treatment and that helped a lot. THey also put him on azithromycin every day 250mg, 10 days worth of Cipro, 5 days worth of prednisone and continue on the Tobi every other month and continue with the pulmozyme.

We haven't heard anything major on the xray, and the ER doc consulted with a pulmo and they said it's pretty standard CF looking lungs (wahtever that means). He has an appt. with the CF clinic on March 19 so they can compare this new xray to older ones, and be more specific with us.

He's feeling a bit better after all the meds, but still run down (he says). I think we might be nearing the time for his first IV meds. Kind of scary, but kind of necessary if it gets to that point. He had mentioned a while back he'd like to look into some type of home healthcare for that, and then suddenly he changed his mind and said he wants to keep home home, and IV's in the hospital. He doesn't want to dread coming home like he dreads going to the medical appointments. I can certainly understand, although I think home IVs (if an option) would be much better for him, and the entire familiy. But I guess we'll see when the time comes.

 

[ladybug]

Sorry to hear things aren't much better, guys! I'm sure the ER trip was no fun... those sats seem really low for usually being 99... I'm usually 94-95, so wouldn't be too bad for me, but I suppose he could really feel it going from almost perfect sats! Yikes.

Please give Mark my best! I know its scary doing your first IVs, but he can try to think of it as giving him the "pick me up" he may need to get back to the gym and get back into his routine and kinda "starting over" with cleaned out lungs... that's how I usually look at it. I find when I start back into my routine after being on IVs I'm very motivated to keep them as clear as possible for as long as possible, and the IVs can sometimes reverse some of the "damage" that has been done... i.e. the buildup of crud from the lungs is now thinner and sometimes non-existant, so what a great feeling to run and weight lift and do treatments with these "clean" lungs! lol... Anyway, that's how I think of it. He needn't dread it, cause its something we all must face, and its incredible he's gone so long without needing them... that's wonderful!

Please keep us posted how the appt. goes. I wish you all well. Hope babies are good too!!!! <img src="i/expressions/face-icon-small-smile.gif" border="0">

 

[ladybug]

Sorry to hear things aren't much better, guys! I'm sure the ER trip was no fun... those sats seem really low for usually being 99... I'm usually 94-95, so wouldn't be too bad for me, but I suppose he could really feel it going from almost perfect sats! Yikes.

Please give Mark my best! I know its scary doing your first IVs, but he can try to think of it as giving him the "pick me up" he may need to get back to the gym and get back into his routine and kinda "starting over" with cleaned out lungs... that's how I usually look at it. I find when I start back into my routine after being on IVs I'm very motivated to keep them as clear as possible for as long as possible, and the IVs can sometimes reverse some of the "damage" that has been done... i.e. the buildup of crud from the lungs is now thinner and sometimes non-existant, so what a great feeling to run and weight lift and do treatments with these "clean" lungs! lol... Anyway, that's how I think of it. He needn't dread it, cause its something we all must face, and its incredible he's gone so long without needing them... that's wonderful!

Please keep us posted how the appt. goes. I wish you all well. Hope babies are good too!!!! <img src="i/expressions/face-icon-small-smile.gif" border="0">

 

[ladybug]

Sorry to hear things aren't much better, guys! I'm sure the ER trip was no fun... those sats seem really low for usually being 99... I'm usually 94-95, so wouldn't be too bad for me, but I suppose he could really feel it going from almost perfect sats! Yikes.

Please give Mark my best! I know its scary doing your first IVs, but he can try to think of it as giving him the "pick me up" he may need to get back to the gym and get back into his routine and kinda "starting over" with cleaned out lungs... that's how I usually look at it. I find when I start back into my routine after being on IVs I'm very motivated to keep them as clear as possible for as long as possible, and the IVs can sometimes reverse some of the "damage" that has been done... i.e. the buildup of crud from the lungs is now thinner and sometimes non-existant, so what a great feeling to run and weight lift and do treatments with these "clean" lungs! lol... Anyway, that's how I think of it. He needn't dread it, cause its something we all must face, and its incredible he's gone so long without needing them... that's wonderful!

Please keep us posted how the appt. goes. I wish you all well. Hope babies are good too!!!! <img src="i/expressions/face-icon-small-smile.gif" border="0">

 

[CowTown]

Sorry to hear Mark is still feeling run down. It does sound though that some IVs might really do him some good. Considering it's his first time, I would imagine he'll respond very well to the meds!!! It's a good thing really - when you need it, it's super. Judging by how well he's been all these years, I bet he'll bounce back quickly and be up to speed in no time.

Hope you feel better Mark!

 

[CowTown]

Sorry to hear Mark is still feeling run down. It does sound though that some IVs might really do him some good. Considering it's his first time, I would imagine he'll respond very well to the meds!!! It's a good thing really - when you need it, it's super. Judging by how well he's been all these years, I bet he'll bounce back quickly and be up to speed in no time.

Hope you feel better Mark!

 

[CowTown]

Sorry to hear Mark is still feeling run down. It does sound though that some IVs might really do him some good. Considering it's his first time, I would imagine he'll respond very well to the meds!!! It's a good thing really - when you need it, it's super. Judging by how well he's been all these years, I bet he'll bounce back quickly and be up to speed in no time.

Hope you feel better Mark!

 

[65rosessamurai]

Any idea what Mark's culturing?

Seems even the strongest of us can easily get knocked on our can from a lung infection!

All of us can most definitely relate (at least I can for sure) to how run down Mark feels with all the meds. It's probably the combination of the meds putting the liver into O.T., and fighting the infection...If he happens to sleep during the day, but still be able to go to sleep at the usual time at night, that's about what the effects of a lung infection does to you.
I'm still on oral meds from my infection. Hopefully, Mark will be healthy enough, and not as resistant, so that oral meds will do the job.
If his appetite drops, it's highly suggested he eat anyway, since his body has a low body fat percentage, the body will take his muscle for energy!

Keep us posted.

Fred

 

[65rosessamurai]

Any idea what Mark's culturing?

Seems even the strongest of us can easily get knocked on our can from a lung infection!

All of us can most definitely relate (at least I can for sure) to how run down Mark feels with all the meds. It's probably the combination of the meds putting the liver into O.T., and fighting the infection...If he happens to sleep during the day, but still be able to go to sleep at the usual time at night, that's about what the effects of a lung infection does to you.
I'm still on oral meds from my infection. Hopefully, Mark will be healthy enough, and not as resistant, so that oral meds will do the job.
If his appetite drops, it's highly suggested he eat anyway, since his body has a low body fat percentage, the body will take his muscle for energy!

Keep us posted.

Fred

 

[65rosessamurai]

Any idea what Mark's culturing?

Seems even the strongest of us can easily get knocked on our can from a lung infection!

All of us can most definitely relate (at least I can for sure) to how run down Mark feels with all the meds. It's probably the combination of the meds putting the liver into O.T., and fighting the infection...If he happens to sleep during the day, but still be able to go to sleep at the usual time at night, that's about what the effects of a lung infection does to you.
I'm still on oral meds from my infection. Hopefully, Mark will be healthy enough, and not as resistant, so that oral meds will do the job.
If his appetite drops, it's highly suggested he eat anyway, since his body has a low body fat percentage, the body will take his muscle for energy!

Keep us posted.

Fred

 

[Markus]

I am doing better thanks for asking! I am still feeling a bit run down but I think that the lack of sleep is playing a big factor in rebounding from this latest thing. My appetite is actually doing good and this weekend I have been able to get rest since mom in law took the kids its allowed me to get some well needed rest. The whole broken up sleep that I get during the week was getting to me but overall i am feeling better!

Thanks

Mark

 

[Markus]

I am doing better thanks for asking! I am still feeling a bit run down but I think that the lack of sleep is playing a big factor in rebounding from this latest thing. My appetite is actually doing good and this weekend I have been able to get rest since mom in law took the kids its allowed me to get some well needed rest. The whole broken up sleep that I get during the week was getting to me but overall i am feeling better!

Thanks

Mark

 

[Markus]

I am doing better thanks for asking! I am still feeling a bit run down but I think that the lack of sleep is playing a big factor in rebounding from this latest thing. My appetite is actually doing good and this weekend I have been able to get rest since mom in law took the kids its allowed me to get some well needed rest. The whole broken up sleep that I get during the week was getting to me but overall i am feeling better!

Thanks

Mark

 

[thefrogprincess]

That suck Julie! I know just how he feels. My pain has never completely gone away either, so I am thinking it might be IV time too. My last culture didn't come up with anything new but I couldn't actually give them any sputum so it was a throat swab. I really don't want to do it, I don't know how I would manage with work and doing home IVs either.

 

[thefrogprincess]

That suck Julie! I know just how he feels. My pain has never completely gone away either, so I am thinking it might be IV time too. My last culture didn't come up with anything new but I couldn't actually give them any sputum so it was a throat swab. I really don't want to do it, I don't know how I would manage with work and doing home IVs either.