We're back from evaluation

K

karismom

New member
Hi kathy

thank you for what you wrote. it must be really tough to be nurse even when you don't have a terminally sick loved one. i GREATLY admire nurses so much more so than doctors cuz you have to also have the med knowledge but MORE importantedly you have to have compassion and not let it get to you ( the hopeless situations). i am very greatful for stanford do not get me wrong as they gave me more years with kari she would have passed 3 years ago i know it. but after the first tx she had a VERY VERY painful stomach ache and could not poop and was SCREAMING in pain and was told to "stop that Kari" there is nothing wrong with you they thought that she just wanted pain meds. so we drove all the way home and as soon as we walked in the door she pretty much collapsed and i drove her all the way back (2 hrs) and they admitted her and found the NEXT DAY that she had a bowel obstruction so they cut her from under her breast bone to her pubic bone (like gutting a fish) and took out a foot of intestine. she nearly died. my daughter KNOWS her body SO well and seems that doctors don't get that. when you are sick ALL your life thats the way it is and these patients need to be LISTENED to. that is why we are SO frustrated right now because she KNOWS that she would survive a third tx or else WHY would she want to try? trust me the first two were no picnic. anyway, i hope that madison is feeling ok how old is she? do you have any other kids? do they have cf? where do you live? take care and will talk to ya later.

lisa <img src="i/expressions/rose.gif" border="0">
 
K

karismom

New member
Hi kathy

thank you for what you wrote. it must be really tough to be nurse even when you don't have a terminally sick loved one. i GREATLY admire nurses so much more so than doctors cuz you have to also have the med knowledge but MORE importantedly you have to have compassion and not let it get to you ( the hopeless situations). i am very greatful for stanford do not get me wrong as they gave me more years with kari she would have passed 3 years ago i know it. but after the first tx she had a VERY VERY painful stomach ache and could not poop and was SCREAMING in pain and was told to "stop that Kari" there is nothing wrong with you they thought that she just wanted pain meds. so we drove all the way home and as soon as we walked in the door she pretty much collapsed and i drove her all the way back (2 hrs) and they admitted her and found the NEXT DAY that she had a bowel obstruction so they cut her from under her breast bone to her pubic bone (like gutting a fish) and took out a foot of intestine. she nearly died. my daughter KNOWS her body SO well and seems that doctors don't get that. when you are sick ALL your life thats the way it is and these patients need to be LISTENED to. that is why we are SO frustrated right now because she KNOWS that she would survive a third tx or else WHY would she want to try? trust me the first two were no picnic. anyway, i hope that madison is feeling ok how old is she? do you have any other kids? do they have cf? where do you live? take care and will talk to ya later.

lisa <img src="i/expressions/rose.gif" border="0">
 
J

JustBeingME

New member
Hi,
I am new and thinking about transplant. I was wondering if you went to Stanford for your transplant since you mentioned them for evaluation. I am thinking of going there instead of anther hospital. What was your experience like there? How good are they? What have you heard about success or failure in transplant there? If you have ANY information, PLEASE let me know. I am 17 and very nervous about making the right decision.
 
J

JustBeingME

New member
Hi,
I am new and thinking about transplant. I was wondering if you went to Stanford for your transplant since you mentioned them for evaluation. I am thinking of going there instead of anther hospital. What was your experience like there? How good are they? What have you heard about success or failure in transplant there? If you have ANY information, PLEASE let me know. I am 17 and very nervous about making the right decision.
 
J

JustBeingME

New member
Hi,
I am new and thinking about transplant. I was wondering if you went to Stanford for your transplant since you mentioned them for evaluation. I am thinking of going there instead of anther hospital. What was your experience like there? How good are they? What have you heard about success or failure in transplant there? If you have ANY information, PLEASE let me know. I am 17 and very nervous about making the right decision.
 
M

madisonsmom

New member
Liza,
I'm sure your too busy packing to reading/ respond much.I just wanted to wish you and Anna well. Hope the trip goes alright to your friends home. What great people to open their home to you. That truely says alot about you and your family.

Is Anna is feeling any better yet? Maddy is starting the tunble down again. I sit here typing while she is doing treatment after treatment, using her vest for the 4th time today. Her throat hurts, and I see her breathing faster than yesturday.
She went to a class today, and it wore her out, I think. Her boyfriend called and she says she'll talk to him later.... It seems that she's just getting so tired of the whole thing. I know this is so hard and I wish I couuld fix it. Oh well, we just keep
trying. No word yet about the records from the hospital. I'm to the point that I can't call or I'll say something I regret. I do think that having a good cover letter will help the Madison clinic sort out things sooner than later and when we get there in a year or 2..just kidding... the MDs will be able to come to a decsion quicker..
Maddy's MD is very meticulous and I think by doing this if we choose to go to chapel hill it will serve us well.
I just looked at the statitics from chapel hill and their wait time is quite abit shorter than most centers. I'm not sure but I think that since I have government insurance we can go to any of the centers. I've got call in to Maddy's transplant coordinator through our insurance.

Well liza, let us know how the appointment goes. How is Anna's back pain? I was thinking that the Mds in TX could call the NE MDs and ask about the pain meds. I know when it comes to narcotics they all get a little weird, though. I do understand that there is risk but if it's being prescibed for a litgit purpose, like acute back pain they should not with hold it. I could go on and on with all the published data in med journals about the low number of patients that actually become "addicted or abuse" narcotics, but I won't. Anyway I hope that her pain has improved.

Kiely, how are you doing?

Lisa,
How heartbreaking for you to have gone through that treatment with Kari's bowel obsrtuction. That is exactly the kind of treatment I was talking about. I believe that behavior is inexcusable. CF patients in gerneral are too often labled, I also see the spinal cord injury patients subjected to simular events. You are sooo right when you say that Kari knows her body so well. That is true of anyone that is constantly trying to fight a disease process or live with a debilitating disease, they learned that to survive that's the only way to be. I've often thought that Maddy is not being taken seriously when she complains of something. It's important to identify this when it happens, but we become so desparate to please the MDs and the hopital staff that we don't. Again, not all facilities are like this or give the staff enough lattiude to alow this to happen, but my opinion is that it actually happens more than is known.

I know you just want what's best for your daughters and It's easy to tell that you are a devoted, loving parent and in the end thats what we all strive to be.<img src="i/expressions/present.gif" border="0">

By the way Maddy is 21.
kathy
 
M

madisonsmom

New member
Liza,
I'm sure your too busy packing to reading/ respond much.I just wanted to wish you and Anna well. Hope the trip goes alright to your friends home. What great people to open their home to you. That truely says alot about you and your family.

Is Anna is feeling any better yet? Maddy is starting the tunble down again. I sit here typing while she is doing treatment after treatment, using her vest for the 4th time today. Her throat hurts, and I see her breathing faster than yesturday.
She went to a class today, and it wore her out, I think. Her boyfriend called and she says she'll talk to him later.... It seems that she's just getting so tired of the whole thing. I know this is so hard and I wish I couuld fix it. Oh well, we just keep
trying. No word yet about the records from the hospital. I'm to the point that I can't call or I'll say something I regret. I do think that having a good cover letter will help the Madison clinic sort out things sooner than later and when we get there in a year or 2..just kidding... the MDs will be able to come to a decsion quicker..
Maddy's MD is very meticulous and I think by doing this if we choose to go to chapel hill it will serve us well.
I just looked at the statitics from chapel hill and their wait time is quite abit shorter than most centers. I'm not sure but I think that since I have government insurance we can go to any of the centers. I've got call in to Maddy's transplant coordinator through our insurance.

Well liza, let us know how the appointment goes. How is Anna's back pain? I was thinking that the Mds in TX could call the NE MDs and ask about the pain meds. I know when it comes to narcotics they all get a little weird, though. I do understand that there is risk but if it's being prescibed for a litgit purpose, like acute back pain they should not with hold it. I could go on and on with all the published data in med journals about the low number of patients that actually become "addicted or abuse" narcotics, but I won't. Anyway I hope that her pain has improved.

Kiely, how are you doing?

Lisa,
How heartbreaking for you to have gone through that treatment with Kari's bowel obsrtuction. That is exactly the kind of treatment I was talking about. I believe that behavior is inexcusable. CF patients in gerneral are too often labled, I also see the spinal cord injury patients subjected to simular events. You are sooo right when you say that Kari knows her body so well. That is true of anyone that is constantly trying to fight a disease process or live with a debilitating disease, they learned that to survive that's the only way to be. I've often thought that Maddy is not being taken seriously when she complains of something. It's important to identify this when it happens, but we become so desparate to please the MDs and the hopital staff that we don't. Again, not all facilities are like this or give the staff enough lattiude to alow this to happen, but my opinion is that it actually happens more than is known.

I know you just want what's best for your daughters and It's easy to tell that you are a devoted, loving parent and in the end thats what we all strive to be.<img src="i/expressions/present.gif" border="0">

By the way Maddy is 21.
kathy
 
M

madisonsmom

New member
Liza,
I'm sure your too busy packing to reading/ respond much.I just wanted to wish you and Anna well. Hope the trip goes alright to your friends home. What great people to open their home to you. That truely says alot about you and your family.

Is Anna is feeling any better yet? Maddy is starting the tunble down again. I sit here typing while she is doing treatment after treatment, using her vest for the 4th time today. Her throat hurts, and I see her breathing faster than yesturday.
She went to a class today, and it wore her out, I think. Her boyfriend called and she says she'll talk to him later.... It seems that she's just getting so tired of the whole thing. I know this is so hard and I wish I couuld fix it. Oh well, we just keep
trying. No word yet about the records from the hospital. I'm to the point that I can't call or I'll say something I regret. I do think that having a good cover letter will help the Madison clinic sort out things sooner than later and when we get there in a year or 2..just kidding... the MDs will be able to come to a decsion quicker..
Maddy's MD is very meticulous and I think by doing this if we choose to go to chapel hill it will serve us well.
I just looked at the statitics from chapel hill and their wait time is quite abit shorter than most centers. I'm not sure but I think that since I have government insurance we can go to any of the centers. I've got call in to Maddy's transplant coordinator through our insurance.

Well liza, let us know how the appointment goes. How is Anna's back pain? I was thinking that the Mds in TX could call the NE MDs and ask about the pain meds. I know when it comes to narcotics they all get a little weird, though. I do understand that there is risk but if it's being prescibed for a litgit purpose, like acute back pain they should not with hold it. I could go on and on with all the published data in med journals about the low number of patients that actually become "addicted or abuse" narcotics, but I won't. Anyway I hope that her pain has improved.

Kiely, how are you doing?

Lisa,
How heartbreaking for you to have gone through that treatment with Kari's bowel obsrtuction. That is exactly the kind of treatment I was talking about. I believe that behavior is inexcusable. CF patients in gerneral are too often labled, I also see the spinal cord injury patients subjected to simular events. You are sooo right when you say that Kari knows her body so well. That is true of anyone that is constantly trying to fight a disease process or live with a debilitating disease, they learned that to survive that's the only way to be. I've often thought that Maddy is not being taken seriously when she complains of something. It's important to identify this when it happens, but we become so desparate to please the MDs and the hopital staff that we don't. Again, not all facilities are like this or give the staff enough lattiude to alow this to happen, but my opinion is that it actually happens more than is known.

I know you just want what's best for your daughters and It's easy to tell that you are a devoted, loving parent and in the end thats what we all strive to be.<img src="i/expressions/present.gif" border="0">

By the way Maddy is 21.
kathy
 
L

Liza

New member
Hi ya'll. We didn't make it to Stanford. So much is going on that this is my first chance to just sit and check on things for a bit. I've cooked two meals for Anna and need to get in the bathroom and do my hair before heading out to the hospital. Now that you are wondering... What happened?...

Like i said before Anna's had bad back pain. The docs in NE tried to prescribe over state lines but the pharmacy said fed. regs. won't allow them to do it. Called in to the CF doc here only for it to be on his half day. He was gone already. The CF coordinator said she'd try and page him but wasn't sure if he'd answer the page or prescribe the narcotics because he didn't like to prescribe them. Even though I emphasized that her doc in NE had prescribed them and that he could call him if needed and that the pharmacy had the script and had called them as well. We never heard back from them. We managed without but it would have been easier to have had them.

Anna woke up Wed. AM unable to catch her breath and in alot of pain on her side and her right shoulder. We cancelled the flights and off to the ER. She was given some morphine and her sats went up to like 94-96. They admitted her and there she is. She is feeling better and they called in a pain management doc to help out. She asked them to prescribe her Vicadin or Toridol instead of the morphine because she really hates Morphine. They agreed. Yesterday, fri., she was doing much better. Her sats are staying the in the mid 90's and the goal is to get her off 24hr oxygen so that she can make her flight to CA. Her appetite is coming back up and we just may get a kilo or two up by the time she gets to stanford.

Stanford said to get there as soon as we can. The CF doc never mentioned the request for the script. She still has to get a filling done. Our plan at the moment is for her to get stable, get her filling and get outta here to CA no matter how good she is feeling so that we are out there if this happens again.

So that's where we stand at this moment. Her nurse from NE called yesterday to see how things were going only to discover she was in the hospital. I guess I will have to emphasize the great NEED for the doc here to let her docs in NE know what's going on. He said he'd call them. That was Wed.

Kathy, how is Maddy doing? I noticed you said she was slidding down. I hope she is feeling better. Please let me know. You know they are not feeling well when they tell the boyfriend they'll call 'em back later. Anna hadn't had her phone on for the last week and a half, nor had she even gone on-line.

Lisa, I hope that Kari gets her third transplant. Are you having to look for a center that will do a third or will Stanford do it? Her story is just a scary reality of what can go wrong. Shouldn't they have rejected the lungs if they had been in the solution for too long? Or is that your point, when you say that it was botched? What is a repurfusion? Certainly if she is feeling that a third transplant could be successful and she is up to it then they should give it to her. Like you said, she knows her body. I agree, most CF'ers have learned to listen to what their bodies are saying better than anyone.

Just being Me, We haven't been listed at Stanford yet. That is where we've been for evaluation though. I couldn't tell you the numbers though. My daughter did all her own research and picked them as one of the few she picked. We went there because they were the fist to reply when her info. was sent to three centers.

Well, I'd better get. Anna will be calling soon to ask "what are you doing?". My husband is there now but she still calls.
 
L

Liza

New member
Hi ya'll. We didn't make it to Stanford. So much is going on that this is my first chance to just sit and check on things for a bit. I've cooked two meals for Anna and need to get in the bathroom and do my hair before heading out to the hospital. Now that you are wondering... What happened?...

Like i said before Anna's had bad back pain. The docs in NE tried to prescribe over state lines but the pharmacy said fed. regs. won't allow them to do it. Called in to the CF doc here only for it to be on his half day. He was gone already. The CF coordinator said she'd try and page him but wasn't sure if he'd answer the page or prescribe the narcotics because he didn't like to prescribe them. Even though I emphasized that her doc in NE had prescribed them and that he could call him if needed and that the pharmacy had the script and had called them as well. We never heard back from them. We managed without but it would have been easier to have had them.

Anna woke up Wed. AM unable to catch her breath and in alot of pain on her side and her right shoulder. We cancelled the flights and off to the ER. She was given some morphine and her sats went up to like 94-96. They admitted her and there she is. She is feeling better and they called in a pain management doc to help out. She asked them to prescribe her Vicadin or Toridol instead of the morphine because she really hates Morphine. They agreed. Yesterday, fri., she was doing much better. Her sats are staying the in the mid 90's and the goal is to get her off 24hr oxygen so that she can make her flight to CA. Her appetite is coming back up and we just may get a kilo or two up by the time she gets to stanford.

Stanford said to get there as soon as we can. The CF doc never mentioned the request for the script. She still has to get a filling done. Our plan at the moment is for her to get stable, get her filling and get outta here to CA no matter how good she is feeling so that we are out there if this happens again.

So that's where we stand at this moment. Her nurse from NE called yesterday to see how things were going only to discover she was in the hospital. I guess I will have to emphasize the great NEED for the doc here to let her docs in NE know what's going on. He said he'd call them. That was Wed.

Kathy, how is Maddy doing? I noticed you said she was slidding down. I hope she is feeling better. Please let me know. You know they are not feeling well when they tell the boyfriend they'll call 'em back later. Anna hadn't had her phone on for the last week and a half, nor had she even gone on-line.

Lisa, I hope that Kari gets her third transplant. Are you having to look for a center that will do a third or will Stanford do it? Her story is just a scary reality of what can go wrong. Shouldn't they have rejected the lungs if they had been in the solution for too long? Or is that your point, when you say that it was botched? What is a repurfusion? Certainly if she is feeling that a third transplant could be successful and she is up to it then they should give it to her. Like you said, she knows her body. I agree, most CF'ers have learned to listen to what their bodies are saying better than anyone.

Just being Me, We haven't been listed at Stanford yet. That is where we've been for evaluation though. I couldn't tell you the numbers though. My daughter did all her own research and picked them as one of the few she picked. We went there because they were the fist to reply when her info. was sent to three centers.

Well, I'd better get. Anna will be calling soon to ask "what are you doing?". My husband is there now but she still calls.
 
L

Liza

New member
Hi ya'll. We didn't make it to Stanford. So much is going on that this is my first chance to just sit and check on things for a bit. I've cooked two meals for Anna and need to get in the bathroom and do my hair before heading out to the hospital. Now that you are wondering... What happened?...

Like i said before Anna's had bad back pain. The docs in NE tried to prescribe over state lines but the pharmacy said fed. regs. won't allow them to do it. Called in to the CF doc here only for it to be on his half day. He was gone already. The CF coordinator said she'd try and page him but wasn't sure if he'd answer the page or prescribe the narcotics because he didn't like to prescribe them. Even though I emphasized that her doc in NE had prescribed them and that he could call him if needed and that the pharmacy had the script and had called them as well. We never heard back from them. We managed without but it would have been easier to have had them.

Anna woke up Wed. AM unable to catch her breath and in alot of pain on her side and her right shoulder. We cancelled the flights and off to the ER. She was given some morphine and her sats went up to like 94-96. They admitted her and there she is. She is feeling better and they called in a pain management doc to help out. She asked them to prescribe her Vicadin or Toridol instead of the morphine because she really hates Morphine. They agreed. Yesterday, fri., she was doing much better. Her sats are staying the in the mid 90's and the goal is to get her off 24hr oxygen so that she can make her flight to CA. Her appetite is coming back up and we just may get a kilo or two up by the time she gets to stanford.

Stanford said to get there as soon as we can. The CF doc never mentioned the request for the script. She still has to get a filling done. Our plan at the moment is for her to get stable, get her filling and get outta here to CA no matter how good she is feeling so that we are out there if this happens again.

So that's where we stand at this moment. Her nurse from NE called yesterday to see how things were going only to discover she was in the hospital. I guess I will have to emphasize the great NEED for the doc here to let her docs in NE know what's going on. He said he'd call them. That was Wed.

Kathy, how is Maddy doing? I noticed you said she was slidding down. I hope she is feeling better. Please let me know. You know they are not feeling well when they tell the boyfriend they'll call 'em back later. Anna hadn't had her phone on for the last week and a half, nor had she even gone on-line.

Lisa, I hope that Kari gets her third transplant. Are you having to look for a center that will do a third or will Stanford do it? Her story is just a scary reality of what can go wrong. Shouldn't they have rejected the lungs if they had been in the solution for too long? Or is that your point, when you say that it was botched? What is a repurfusion? Certainly if she is feeling that a third transplant could be successful and she is up to it then they should give it to her. Like you said, she knows her body. I agree, most CF'ers have learned to listen to what their bodies are saying better than anyone.

Just being Me, We haven't been listed at Stanford yet. That is where we've been for evaluation though. I couldn't tell you the numbers though. My daughter did all her own research and picked them as one of the few she picked. We went there because they were the fist to reply when her info. was sent to three centers.

Well, I'd better get. Anna will be calling soon to ask "what are you doing?". My husband is there now but she still calls.
 
K

karismom

New member
Hi Kathy and Liza <img src="i/expressions/sun.gif" border="0">

Thanks to you both for responding, I look forward to hearing from you guys! We have an appointment on 2/26 to go down to CPMC in SF (where Kari has spent half her life it seems) to meet with doctors about what we hope is to get a third transplant. it's either that or to hear that they suggest that she just live whatever time she has left to the fullest and "get her affairs in order". i am a WRECK to say the least. that on top of i have to have the dreaded "mammogram callback" test on monday and had to postpone my partial hysterectomy until thats all cleared up! i'm sorry guys thats a little more info than ya needed right? its just that......... well.............. it just seems that when you have sick kids, folks scatter like crow! i hear stories about family and friends "rallying with support" and quite frankly i have not seen that AT ALL in my life! and i have a HUGE family! oh well i guess that having to acknowledge my situation reminds all them that "____ really can and DOES happen in life! ah well.

Liza, a reperfusion injury is when during the time that they handle the lungs while removing, transporting, or putting into the recipient, a part of the lung gets like "bruised" or injured, and so then when its time for the lungs to start functioning in the recip, as the blood is running through them for the first time it messes up the flow and then causes severe problems during recovery. it's no good basically. and the only way that i know that her first lungs were in the solution too long is that the helicopter was over an hour late getting to stanford due to rain and one of the real new nurses slipped and told me! also she got that aspergillis thing during her first tx because of them not taking the correct precautions during that construction. stanford won't do do a third on her and i would not be so angry if i didn't think that they kinda "owe her" at least a chance after all the mistakes. like i said, i really am grateful for them in a lot of ways, but also torn as well! but not alot of folks have all that bad luck happen so not to worry for you and Anna! its all just a gamble. and just scary.

Kathy, so very sorry to her that madison is not doing well. it breaks my heart to know what shes going through. it gets very frightening to be living that of which you have always dreaded! don't give up! bye for now.

Lisa
 
K

karismom

New member
Hi Kathy and Liza <img src="i/expressions/sun.gif" border="0">

Thanks to you both for responding, I look forward to hearing from you guys! We have an appointment on 2/26 to go down to CPMC in SF (where Kari has spent half her life it seems) to meet with doctors about what we hope is to get a third transplant. it's either that or to hear that they suggest that she just live whatever time she has left to the fullest and "get her affairs in order". i am a WRECK to say the least. that on top of i have to have the dreaded "mammogram callback" test on monday and had to postpone my partial hysterectomy until thats all cleared up! i'm sorry guys thats a little more info than ya needed right? its just that......... well.............. it just seems that when you have sick kids, folks scatter like crow! i hear stories about family and friends "rallying with support" and quite frankly i have not seen that AT ALL in my life! and i have a HUGE family! oh well i guess that having to acknowledge my situation reminds all them that "____ really can and DOES happen in life! ah well.

Liza, a reperfusion injury is when during the time that they handle the lungs while removing, transporting, or putting into the recipient, a part of the lung gets like "bruised" or injured, and so then when its time for the lungs to start functioning in the recip, as the blood is running through them for the first time it messes up the flow and then causes severe problems during recovery. it's no good basically. and the only way that i know that her first lungs were in the solution too long is that the helicopter was over an hour late getting to stanford due to rain and one of the real new nurses slipped and told me! also she got that aspergillis thing during her first tx because of them not taking the correct precautions during that construction. stanford won't do do a third on her and i would not be so angry if i didn't think that they kinda "owe her" at least a chance after all the mistakes. like i said, i really am grateful for them in a lot of ways, but also torn as well! but not alot of folks have all that bad luck happen so not to worry for you and Anna! its all just a gamble. and just scary.

Kathy, so very sorry to her that madison is not doing well. it breaks my heart to know what shes going through. it gets very frightening to be living that of which you have always dreaded! don't give up! bye for now.

Lisa
 
K

karismom

New member
Hi Kathy and Liza <img src="i/expressions/sun.gif" border="0">

Thanks to you both for responding, I look forward to hearing from you guys! We have an appointment on 2/26 to go down to CPMC in SF (where Kari has spent half her life it seems) to meet with doctors about what we hope is to get a third transplant. it's either that or to hear that they suggest that she just live whatever time she has left to the fullest and "get her affairs in order". i am a WRECK to say the least. that on top of i have to have the dreaded "mammogram callback" test on monday and had to postpone my partial hysterectomy until thats all cleared up! i'm sorry guys thats a little more info than ya needed right? its just that......... well.............. it just seems that when you have sick kids, folks scatter like crow! i hear stories about family and friends "rallying with support" and quite frankly i have not seen that AT ALL in my life! and i have a HUGE family! oh well i guess that having to acknowledge my situation reminds all them that "____ really can and DOES happen in life! ah well.

Liza, a reperfusion injury is when during the time that they handle the lungs while removing, transporting, or putting into the recipient, a part of the lung gets like "bruised" or injured, and so then when its time for the lungs to start functioning in the recip, as the blood is running through them for the first time it messes up the flow and then causes severe problems during recovery. it's no good basically. and the only way that i know that her first lungs were in the solution too long is that the helicopter was over an hour late getting to stanford due to rain and one of the real new nurses slipped and told me! also she got that aspergillis thing during her first tx because of them not taking the correct precautions during that construction. stanford won't do do a third on her and i would not be so angry if i didn't think that they kinda "owe her" at least a chance after all the mistakes. like i said, i really am grateful for them in a lot of ways, but also torn as well! but not alot of folks have all that bad luck happen so not to worry for you and Anna! its all just a gamble. and just scary.

Kathy, so very sorry to her that madison is not doing well. it breaks my heart to know what shes going through. it gets very frightening to be living that of which you have always dreaded! don't give up! bye for now.

Lisa
 
K

kybert

New member
heya kathy. im doing so so. i spoke to soon when i said i was having a really good run lol. i started going downhill again a week ago so im back on cipro and colistin nebs. i just hope they work like they did before. i applied for a dog grooming course and it starts on the 14th so i want to be as well as i can be for that.
 
K

kybert

New member
heya kathy. im doing so so. i spoke to soon when i said i was having a really good run lol. i started going downhill again a week ago so im back on cipro and colistin nebs. i just hope they work like they did before. i applied for a dog grooming course and it starts on the 14th so i want to be as well as i can be for that.
 
K

kybert

New member
heya kathy. im doing so so. i spoke to soon when i said i was having a really good run lol. i started going downhill again a week ago so im back on cipro and colistin nebs. i just hope they work like they did before. i applied for a dog grooming course and it starts on the 14th so i want to be as well as i can be for that.
 
M

madisonsmom

New member
Kiely,
Sounds like we are all on the downside right now. I too hope the cipr/colistin combo works. Maddy just went back on the colistin nebs.

Dog groomer... in my younger days I was a Vet tech, I love animals. The worst part of my job was docking little 3week old puppies tails. We weren't aloud to use any sedation either so those poor babies suffered. Anyway hope it works out for you. Oooh I almost forgot.... my good friend's daughter is going to Perth for a "semester abroad" Can't remember the college right now, but she said it's actually located outside of Perth. It's a small world.... with in 1 -2 months Perth has come into my life twice.

Lisa,
I too look forward to this exchange, it seems so easy to talk 'cause we don't have to go into a big explanation.. we just understand, too well... This my new therapy.
I am happy that you got the appt at SF. How is Kari doing? Is she actually rejecting the lungs she has now or is there another problem? I was reading your comment about your health and thought how it seems like we're not aloud to actually get sick or have our own issues with out feeling guilty. Take care of yourself...so you can takecare of your girls. I wish there was more support for you,especially from your family. The simple fact is that even our relatives need a nudge sometimes, I've had to ask at times when I can't believe they didn't offer. I just think they don't know what we go through, there's no way unless you live it.
My parents moved to Wi from Ashville, NC in 2000 to help and just recently left to live in Atlanta. Now I need them more than ever but they were tired of the weather here, and I think they were feeling like they weren't helping as much as they wanted. Now I just ask and they fly up here, but now they have to stay with us, which can create a little tension. The weird thing is that not one of my husband's family has ever offered help, they are different from my family as far as being close and open with each other. Who knows...... !!!!??? It can be so frustrating.

Liza,
Wow... no wonder Anna likes her NE docs better. Did she collaps from the lack of O2 due to splinting from the pain.? the shoulder pain with low 02 makes me think of a collapsed lung. I know you can travel with 02, we did it to go to Hawaii. It's like 50$, but you may get the airline to help out especially if they know the situation. I knew something wasn't right when you hadn't replied for a while. Back to the pain med situation, I wonder if the nurse actually contacted the Doc.. she may have thought she knew the answer. I would want to have a conversation with the Md about the situation esecially the fact that he wouldn't even call NE.

Maddy's still droopy, but not quite ready for the hosp... I want her to call Julie(md)
on monday. She is depressed. So she tends to ignore what she should do when this happens. I'm going to make the call if she doesn't. My job is crazy right now and I went in on Sat. to catch up. I emailed my boss "a surgeon" and told him things have to change, I can't work 50-60 hrs a week and take care of the issues with Maddy, especially because I can go back to The ICU and make same amt of $ and work 28 hrs a week.

I have to get moving, trying to pick up the house so the cleaners don't have to clean around our mess.. Stay in touch, my new freinds.
kathy
 
M

madisonsmom

New member
Kiely,
Sounds like we are all on the downside right now. I too hope the cipr/colistin combo works. Maddy just went back on the colistin nebs.

Dog groomer... in my younger days I was a Vet tech, I love animals. The worst part of my job was docking little 3week old puppies tails. We weren't aloud to use any sedation either so those poor babies suffered. Anyway hope it works out for you. Oooh I almost forgot.... my good friend's daughter is going to Perth for a "semester abroad" Can't remember the college right now, but she said it's actually located outside of Perth. It's a small world.... with in 1 -2 months Perth has come into my life twice.

Lisa,
I too look forward to this exchange, it seems so easy to talk 'cause we don't have to go into a big explanation.. we just understand, too well... This my new therapy.
I am happy that you got the appt at SF. How is Kari doing? Is she actually rejecting the lungs she has now or is there another problem? I was reading your comment about your health and thought how it seems like we're not aloud to actually get sick or have our own issues with out feeling guilty. Take care of yourself...so you can takecare of your girls. I wish there was more support for you,especially from your family. The simple fact is that even our relatives need a nudge sometimes, I've had to ask at times when I can't believe they didn't offer. I just think they don't know what we go through, there's no way unless you live it.
My parents moved to Wi from Ashville, NC in 2000 to help and just recently left to live in Atlanta. Now I need them more than ever but they were tired of the weather here, and I think they were feeling like they weren't helping as much as they wanted. Now I just ask and they fly up here, but now they have to stay with us, which can create a little tension. The weird thing is that not one of my husband's family has ever offered help, they are different from my family as far as being close and open with each other. Who knows...... !!!!??? It can be so frustrating.

Liza,
Wow... no wonder Anna likes her NE docs better. Did she collaps from the lack of O2 due to splinting from the pain.? the shoulder pain with low 02 makes me think of a collapsed lung. I know you can travel with 02, we did it to go to Hawaii. It's like 50$, but you may get the airline to help out especially if they know the situation. I knew something wasn't right when you hadn't replied for a while. Back to the pain med situation, I wonder if the nurse actually contacted the Doc.. she may have thought she knew the answer. I would want to have a conversation with the Md about the situation esecially the fact that he wouldn't even call NE.

Maddy's still droopy, but not quite ready for the hosp... I want her to call Julie(md)
on monday. She is depressed. So she tends to ignore what she should do when this happens. I'm going to make the call if she doesn't. My job is crazy right now and I went in on Sat. to catch up. I emailed my boss "a surgeon" and told him things have to change, I can't work 50-60 hrs a week and take care of the issues with Maddy, especially because I can go back to The ICU and make same amt of $ and work 28 hrs a week.

I have to get moving, trying to pick up the house so the cleaners don't have to clean around our mess.. Stay in touch, my new freinds.
kathy
 
M

madisonsmom

New member
Kiely,
Sounds like we are all on the downside right now. I too hope the cipr/colistin combo works. Maddy just went back on the colistin nebs.

Dog groomer... in my younger days I was a Vet tech, I love animals. The worst part of my job was docking little 3week old puppies tails. We weren't aloud to use any sedation either so those poor babies suffered. Anyway hope it works out for you. Oooh I almost forgot.... my good friend's daughter is going to Perth for a "semester abroad" Can't remember the college right now, but she said it's actually located outside of Perth. It's a small world.... with in 1 -2 months Perth has come into my life twice.

Lisa,
I too look forward to this exchange, it seems so easy to talk 'cause we don't have to go into a big explanation.. we just understand, too well... This my new therapy.
I am happy that you got the appt at SF. How is Kari doing? Is she actually rejecting the lungs she has now or is there another problem? I was reading your comment about your health and thought how it seems like we're not aloud to actually get sick or have our own issues with out feeling guilty. Take care of yourself...so you can takecare of your girls. I wish there was more support for you,especially from your family. The simple fact is that even our relatives need a nudge sometimes, I've had to ask at times when I can't believe they didn't offer. I just think they don't know what we go through, there's no way unless you live it.
My parents moved to Wi from Ashville, NC in 2000 to help and just recently left to live in Atlanta. Now I need them more than ever but they were tired of the weather here, and I think they were feeling like they weren't helping as much as they wanted. Now I just ask and they fly up here, but now they have to stay with us, which can create a little tension. The weird thing is that not one of my husband's family has ever offered help, they are different from my family as far as being close and open with each other. Who knows...... !!!!??? It can be so frustrating.

Liza,
Wow... no wonder Anna likes her NE docs better. Did she collaps from the lack of O2 due to splinting from the pain.? the shoulder pain with low 02 makes me think of a collapsed lung. I know you can travel with 02, we did it to go to Hawaii. It's like 50$, but you may get the airline to help out especially if they know the situation. I knew something wasn't right when you hadn't replied for a while. Back to the pain med situation, I wonder if the nurse actually contacted the Doc.. she may have thought she knew the answer. I would want to have a conversation with the Md about the situation esecially the fact that he wouldn't even call NE.

Maddy's still droopy, but not quite ready for the hosp... I want her to call Julie(md)
on monday. She is depressed. So she tends to ignore what she should do when this happens. I'm going to make the call if she doesn't. My job is crazy right now and I went in on Sat. to catch up. I emailed my boss "a surgeon" and told him things have to change, I can't work 50-60 hrs a week and take care of the issues with Maddy, especially because I can go back to The ICU and make same amt of $ and work 28 hrs a week.

I have to get moving, trying to pick up the house so the cleaners don't have to clean around our mess.. Stay in touch, my new freinds.
kathy
 
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