We're back from evaluation

[madisonsmom]

Hi,
Liza, I'm sorry Anna didn't feel any better after the hospital. I know you must be worried. I hope she tolerates the trip, I'm glad the date was moved ahead so they can evaluate her sooner. I hope you can stay there and maybe they can help tune her up with some new ideas. I know what you mean about the coughing and losing her food. Does she have G tube? Her nutrition is so important. When they can't eat, it's not good. Has Anna ever been on Megace? Maddy has had it and we both can't believe how well it works She goes from no apetite to eating alot any the nausea seems to go away also.. Another thing that works when Maddy has no apetite is taking miralax to clean out. Hope I'm not just rambleing with usless information, but I feel your worry and have been there with Maddy.
Maddy has actually had lots of back issues, partly do to breaking ribs and tearing intercostal muscles from coughing so hard and the posture issue doesn't help. She has taken oxycodone for the torn muscles and believe it or not the drug some how seems to loosen her cough. At first we thought her sats just improved from the pain relief but she's not splinting(from the pain) any more, and her cough gets tighter when the drug wears off and her sats go down. The MDs even noted the changes. They were nervous about perscribing a narcotic but it's a low dose and they watched her sats go up and down with the meds. We consulted a pain managment specialst and he said the the narcotic affect could be producing some broncho dialation, but he didn't have any reseach stating that low dose oxycodone would produce the effect we were seeing with Maddy. So she's been on a low dose for several years. They have even bumped the dose up in the hospital, but she always go back down when she comes home. Maybe worth checking into for you, just a suggestion.
Please let me know how everything goes witht he evaluation and I wish you the best

 

[karismom]

hi madisons mom

i was wondering what your doctor meant by saying that your daughter has a very complicated case of cf? oh i just feel for you ALL so very much. it is so very scary and when the tx happens it is so surreal just so..............WOW. i am saying prayers every day for your precious, SPECIAL girls. for Anna and Madison and all of the wonderful spirits who are waiting for another chance. Kari is doing ok TODAY and that is all i have to hang onto. we are not going to give up, but then you also have to be realistic. Kari has a little 5 yr old girl Mayah who worships the ground she walks on and it is tough for her having her mom be so sick all her life. Liza Kari had both her tx's at Stanford. i will tell you all about it if you would like. HANG IN THERE GUYS! <img src="i/expressions/face-icon-small-smile.gif" border="0">

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

 

[karismom]

hi madisons mom

i was wondering what your doctor meant by saying that your daughter has a very complicated case of cf? oh i just feel for you ALL so very much. it is so very scary and when the tx happens it is so surreal just so..............WOW. i am saying prayers every day for your precious, SPECIAL girls. for Anna and Madison and all of the wonderful spirits who are waiting for another chance. Kari is doing ok TODAY and that is all i have to hang onto. we are not going to give up, but then you also have to be realistic. Kari has a little 5 yr old girl Mayah who worships the ground she walks on and it is tough for her having her mom be so sick all her life. Liza Kari had both her tx's at Stanford. i will tell you all about it if you would like. HANG IN THERE GUYS! <img src="i/expressions/face-icon-small-smile.gif" border="0">

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

 

[karismom]

hi madisons mom

i was wondering what your doctor meant by saying that your daughter has a very complicated case of cf? oh i just feel for you ALL so very much. it is so very scary and when the tx happens it is so surreal just so..............WOW. i am saying prayers every day for your precious, SPECIAL girls. for Anna and Madison and all of the wonderful spirits who are waiting for another chance. Kari is doing ok TODAY and that is all i have to hang onto. we are not going to give up, but then you also have to be realistic. Kari has a little 5 yr old girl Mayah who worships the ground she walks on and it is tough for her having her mom be so sick all her life. Liza Kari had both her tx's at Stanford. i will tell you all about it if you would like. HANG IN THERE GUYS! <img src="i/expressions/face-icon-small-smile.gif" border="0">

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

 

[madisonsmom]

Lisa,
Hi, Thanks for the prayers and encouragement.

To answer your question regarding " complicated case" I think she was refering to her not having the transplant here at the medical college of WI. Madison has alot of issues that would need medical management post transplant. She has ABPA, osteopenia,kidney stones, non CFRD and CFRD??, which has been proven to be very hard to manage. She is on bipap and 02 at night and sometimes during the day. She has severe allergies to several antibiotics. Like most Cfers she has bad sinuses, she's had 8 surgies. Not sure if that really means she's complicated but to our facility she is complicated, I guess. I also think that we would do better elsewhere, I have resigned myself to that.

Would like to hear about your experience at stanford and i'm sure Liza would also, they are leaving , I think today, for the 2nd evaluation. She may not be able to answer with everything going on and it sounds like Anna is not doing well right now.<img src="i/expressions/face-icon-small-sad.gif" border="0">

My daughter also just got done with 19 days of IV antibx, she responded but is quickly losing ground off the antibiotics, it's been 6 days.

I heard of a hospital in the chicago area that just did their 3rd transplant on a CF pt. I don't know where it was but it was in our Wi. paper, you may be able to find it with a google search.
thanks again,
kathy

Kiely , I hope youre still doing well. Maybe cipro's your new drug.
kathy

kathy

 

[madisonsmom]

Lisa,
Hi, Thanks for the prayers and encouragement.

To answer your question regarding " complicated case" I think she was refering to her not having the transplant here at the medical college of WI. Madison has alot of issues that would need medical management post transplant. She has ABPA, osteopenia,kidney stones, non CFRD and CFRD??, which has been proven to be very hard to manage. She is on bipap and 02 at night and sometimes during the day. She has severe allergies to several antibiotics. Like most Cfers she has bad sinuses, she's had 8 surgies. Not sure if that really means she's complicated but to our facility she is complicated, I guess. I also think that we would do better elsewhere, I have resigned myself to that.

Would like to hear about your experience at stanford and i'm sure Liza would also, they are leaving , I think today, for the 2nd evaluation. She may not be able to answer with everything going on and it sounds like Anna is not doing well right now.<img src="i/expressions/face-icon-small-sad.gif" border="0">

My daughter also just got done with 19 days of IV antibx, she responded but is quickly losing ground off the antibiotics, it's been 6 days.

I heard of a hospital in the chicago area that just did their 3rd transplant on a CF pt. I don't know where it was but it was in our Wi. paper, you may be able to find it with a google search.
thanks again,
kathy

Kiely , I hope youre still doing well. Maybe cipro's your new drug.
kathy

kathy

 

[madisonsmom]

Lisa,
Hi, Thanks for the prayers and encouragement.

To answer your question regarding " complicated case" I think she was refering to her not having the transplant here at the medical college of WI. Madison has alot of issues that would need medical management post transplant. She has ABPA, osteopenia,kidney stones, non CFRD and CFRD??, which has been proven to be very hard to manage. She is on bipap and 02 at night and sometimes during the day. She has severe allergies to several antibiotics. Like most Cfers she has bad sinuses, she's had 8 surgies. Not sure if that really means she's complicated but to our facility she is complicated, I guess. I also think that we would do better elsewhere, I have resigned myself to that.

Would like to hear about your experience at stanford and i'm sure Liza would also, they are leaving , I think today, for the 2nd evaluation. She may not be able to answer with everything going on and it sounds like Anna is not doing well right now.<img src="i/expressions/face-icon-small-sad.gif" border="0">

My daughter also just got done with 19 days of IV antibx, she responded but is quickly losing ground off the antibiotics, it's been 6 days.

I heard of a hospital in the chicago area that just did their 3rd transplant on a CF pt. I don't know where it was but it was in our Wi. paper, you may be able to find it with a google search.
thanks again,
kathy

Kiely , I hope youre still doing well. Maybe cipro's your new drug.
kathy

kathy

 

[karismom]

kathy

your girl certainly has gone through alot! it is crazy how all cf ers have such different med history's isn't it? my younger daughter Holli for example is 21 yrs old and such a MILD case of cf it's incredible! she has only been hospitalized a handful of times in her life Thank God, and altho she has pseudomonas, and has some digestive and sinus problems, her pft's are 90 and she has led a relatively "normal" life. as opposed to Kari who had meconium ileus at birth, 2 tx's, numerous sinus surgeries with pft's at 21, as well as diabetes now! born from the same parents who carry the same gene, delta 508. there's SO MANY variables with cf which makes it even more hard to deal with. ia am VERY sorry <img src="i/expressions/brokenheart.gif" border="0"> to hear that Anna is not doing well. my thoughts and prayers are with both Liza and Anna and you and Madison as well. i was wondering if you have ANY info regarding that story you read about the third tx in chicago??? Kari and I desperately need any info we can get. let me know please if you find anything re it. I would REALLY appreciate it. Take care "talk" to you soon.

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

 

[karismom]

kathy

your girl certainly has gone through alot! it is crazy how all cf ers have such different med history's isn't it? my younger daughter Holli for example is 21 yrs old and such a MILD case of cf it's incredible! she has only been hospitalized a handful of times in her life Thank God, and altho she has pseudomonas, and has some digestive and sinus problems, her pft's are 90 and she has led a relatively "normal" life. as opposed to Kari who had meconium ileus at birth, 2 tx's, numerous sinus surgeries with pft's at 21, as well as diabetes now! born from the same parents who carry the same gene, delta 508. there's SO MANY variables with cf which makes it even more hard to deal with. ia am VERY sorry <img src="i/expressions/brokenheart.gif" border="0"> to hear that Anna is not doing well. my thoughts and prayers are with both Liza and Anna and you and Madison as well. i was wondering if you have ANY info regarding that story you read about the third tx in chicago??? Kari and I desperately need any info we can get. let me know please if you find anything re it. I would REALLY appreciate it. Take care "talk" to you soon.

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

 

[karismom]

kathy

your girl certainly has gone through alot! it is crazy how all cf ers have such different med history's isn't it? my younger daughter Holli for example is 21 yrs old and such a MILD case of cf it's incredible! she has only been hospitalized a handful of times in her life Thank God, and altho she has pseudomonas, and has some digestive and sinus problems, her pft's are 90 and she has led a relatively "normal" life. as opposed to Kari who had meconium ileus at birth, 2 tx's, numerous sinus surgeries with pft's at 21, as well as diabetes now! born from the same parents who carry the same gene, delta 508. there's SO MANY variables with cf which makes it even more hard to deal with. ia am VERY sorry <img src="i/expressions/brokenheart.gif" border="0"> to hear that Anna is not doing well. my thoughts and prayers are with both Liza and Anna and you and Madison as well. i was wondering if you have ANY info regarding that story you read about the third tx in chicago??? Kari and I desperately need any info we can get. let me know please if you find anything re it. I would REALLY appreciate it. Take care "talk" to you soon.

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

 

[Liza]

I still can not believe how alike Anna and Maddy seem to be. Oh, the appt. at Stanford is next week. Her dad will be taking her out there for the appt. and I will head out on the weekend so we can trade off. Back to Anna and Maddy.

Yea, she has tried Megace. Isn't it wonderful? They didn't put her back on it when she left the hosp. this time but we are going to start back. I don't know if it was an oversite or what. Sometimes they do that. It's a teaching hosp. and the residents are the ones writting the discharge meds. They have even put down that she stop the Pancrease! Anna tells them "Uh, I think I kinda need that one if I wanna eat."

No G tube. She won't have one. They have discussed it with her in the past. I think it's the one last thing she can remain in control of. We have always done fairly well and getting the weight up when they say it needs to go up. They didn't say she needed to gain but we are sure she does because she's been so sick and feeling puky.

She's also got sinus probs. Only two surgeries though. She has major allergies, seasonal. Osteopenia, kidney stones (twice), and CFRD (just diagnosed in march) . She only has to take 15 units of Lantus in the evening though, they stay pretty normal throughout the day.

I was surprised to see that Maddy's doctors prescribe oxy. for her. Anna came home with some Percocet and the resident had put some refills on it but I guess it's a Fed. law that you can't have refills on narcotics. She had 10 pills w/instructions for 2 pills every 6hrs for pain. She only took a dose at night if it was really bad and of course we have run out already. But now that we are back in TX we can't get another script because the pharmacy can't fill a script from out of state for a controlled substance. The CF doc here either won't prescribe it or just has ignored our request. Even though he knows Anna's history and that her doc at UNMC prescribed it and that we just can't get it filled because we're not in NE. I had my husband read what you said (he just got back from FL today) about the low dose Oxy and he explained to me that it makes since. My husband is a PA., family practice and ENT.

Lisa, I would love to hear about your experiences at Stanford. Do ya'll live out there? We will be living with a couple in San Lorenzo. Just across the bay they tell us. Do you know anything about that area? Seems they just finished adding to their house and have plenty of room since it is just the two of them. What a Godsend they are. Please tell us what you think of Stanford. Anna picked them as her second choice because of the number of tx's they've done, success rates, and I think their 5 & 10 yr outlook. She first wanted to go to UNC Chapel Hill. Her next choice was USC, LA. Thank you so much for your thoughts and prayers!

Shammie, thank you for your thoughts! I'm so sorry to hear about your brother. I know the risks are all a part of this whole process and am discovering how difficult it is to be at this point. I hope that he had a wonderful 7 yrs. My prayers for you and your family.

Well it's taken me all night to get this typed out and I have to get up and go for my fasting lab draw tomorrow. I just hope my little ole Cholestrol numbers are good and make my doctor happy. Figured I need to be sure I have my follow up done before leaving for CA. I'd have just ignored it but discovered that sneaky ole doc only gave me enough refills to get me through til my next chol. check. Unfortunantly it wouldn't get me through the next ?#months. Good night ya'll.

Kylie, I hope your Cipro's still working for ya! Lisa, I look forward to hearing about your experiences at Stanford. Kathy, I still can't believe how similar our girls are in their problems. I don't feel so alone.

 

[Liza]

I still can not believe how alike Anna and Maddy seem to be. Oh, the appt. at Stanford is next week. Her dad will be taking her out there for the appt. and I will head out on the weekend so we can trade off. Back to Anna and Maddy.

Yea, she has tried Megace. Isn't it wonderful? They didn't put her back on it when she left the hosp. this time but we are going to start back. I don't know if it was an oversite or what. Sometimes they do that. It's a teaching hosp. and the residents are the ones writting the discharge meds. They have even put down that she stop the Pancrease! Anna tells them "Uh, I think I kinda need that one if I wanna eat."

No G tube. She won't have one. They have discussed it with her in the past. I think it's the one last thing she can remain in control of. We have always done fairly well and getting the weight up when they say it needs to go up. They didn't say she needed to gain but we are sure she does because she's been so sick and feeling puky.

She's also got sinus probs. Only two surgeries though. She has major allergies, seasonal. Osteopenia, kidney stones (twice), and CFRD (just diagnosed in march) . She only has to take 15 units of Lantus in the evening though, they stay pretty normal throughout the day.

I was surprised to see that Maddy's doctors prescribe oxy. for her. Anna came home with some Percocet and the resident had put some refills on it but I guess it's a Fed. law that you can't have refills on narcotics. She had 10 pills w/instructions for 2 pills every 6hrs for pain. She only took a dose at night if it was really bad and of course we have run out already. But now that we are back in TX we can't get another script because the pharmacy can't fill a script from out of state for a controlled substance. The CF doc here either won't prescribe it or just has ignored our request. Even though he knows Anna's history and that her doc at UNMC prescribed it and that we just can't get it filled because we're not in NE. I had my husband read what you said (he just got back from FL today) about the low dose Oxy and he explained to me that it makes since. My husband is a PA., family practice and ENT.

Lisa, I would love to hear about your experiences at Stanford. Do ya'll live out there? We will be living with a couple in San Lorenzo. Just across the bay they tell us. Do you know anything about that area? Seems they just finished adding to their house and have plenty of room since it is just the two of them. What a Godsend they are. Please tell us what you think of Stanford. Anna picked them as her second choice because of the number of tx's they've done, success rates, and I think their 5 & 10 yr outlook. She first wanted to go to UNC Chapel Hill. Her next choice was USC, LA. Thank you so much for your thoughts and prayers!

Shammie, thank you for your thoughts! I'm so sorry to hear about your brother. I know the risks are all a part of this whole process and am discovering how difficult it is to be at this point. I hope that he had a wonderful 7 yrs. My prayers for you and your family.

Well it's taken me all night to get this typed out and I have to get up and go for my fasting lab draw tomorrow. I just hope my little ole Cholestrol numbers are good and make my doctor happy. Figured I need to be sure I have my follow up done before leaving for CA. I'd have just ignored it but discovered that sneaky ole doc only gave me enough refills to get me through til my next chol. check. Unfortunantly it wouldn't get me through the next ?#months. Good night ya'll.

Kylie, I hope your Cipro's still working for ya! Lisa, I look forward to hearing about your experiences at Stanford. Kathy, I still can't believe how similar our girls are in their problems. I don't feel so alone.

 

[Liza]

I still can not believe how alike Anna and Maddy seem to be. Oh, the appt. at Stanford is next week. Her dad will be taking her out there for the appt. and I will head out on the weekend so we can trade off. Back to Anna and Maddy.

Yea, she has tried Megace. Isn't it wonderful? They didn't put her back on it when she left the hosp. this time but we are going to start back. I don't know if it was an oversite or what. Sometimes they do that. It's a teaching hosp. and the residents are the ones writting the discharge meds. They have even put down that she stop the Pancrease! Anna tells them "Uh, I think I kinda need that one if I wanna eat."

No G tube. She won't have one. They have discussed it with her in the past. I think it's the one last thing she can remain in control of. We have always done fairly well and getting the weight up when they say it needs to go up. They didn't say she needed to gain but we are sure she does because she's been so sick and feeling puky.

She's also got sinus probs. Only two surgeries though. She has major allergies, seasonal. Osteopenia, kidney stones (twice), and CFRD (just diagnosed in march) . She only has to take 15 units of Lantus in the evening though, they stay pretty normal throughout the day.

I was surprised to see that Maddy's doctors prescribe oxy. for her. Anna came home with some Percocet and the resident had put some refills on it but I guess it's a Fed. law that you can't have refills on narcotics. She had 10 pills w/instructions for 2 pills every 6hrs for pain. She only took a dose at night if it was really bad and of course we have run out already. But now that we are back in TX we can't get another script because the pharmacy can't fill a script from out of state for a controlled substance. The CF doc here either won't prescribe it or just has ignored our request. Even though he knows Anna's history and that her doc at UNMC prescribed it and that we just can't get it filled because we're not in NE. I had my husband read what you said (he just got back from FL today) about the low dose Oxy and he explained to me that it makes since. My husband is a PA., family practice and ENT.

Lisa, I would love to hear about your experiences at Stanford. Do ya'll live out there? We will be living with a couple in San Lorenzo. Just across the bay they tell us. Do you know anything about that area? Seems they just finished adding to their house and have plenty of room since it is just the two of them. What a Godsend they are. Please tell us what you think of Stanford. Anna picked them as her second choice because of the number of tx's they've done, success rates, and I think their 5 & 10 yr outlook. She first wanted to go to UNC Chapel Hill. Her next choice was USC, LA. Thank you so much for your thoughts and prayers!

Shammie, thank you for your thoughts! I'm so sorry to hear about your brother. I know the risks are all a part of this whole process and am discovering how difficult it is to be at this point. I hope that he had a wonderful 7 yrs. My prayers for you and your family.

Well it's taken me all night to get this typed out and I have to get up and go for my fasting lab draw tomorrow. I just hope my little ole Cholestrol numbers are good and make my doctor happy. Figured I need to be sure I have my follow up done before leaving for CA. I'd have just ignored it but discovered that sneaky ole doc only gave me enough refills to get me through til my next chol. check. Unfortunantly it wouldn't get me through the next ?#months. Good night ya'll.

Kylie, I hope your Cipro's still working for ya! Lisa, I look forward to hearing about your experiences at Stanford. Kathy, I still can't believe how similar our girls are in their problems. I don't feel so alone.

 

[karismom]

Hi Liza <img src="i/expressions/face-icon-small-happy.gif" border="0">

Well we are all originally from Reno, Nevada, but Nevada Medicaid does not cover lung tx's so my ex husband (with whom i remain a GOOD friend) moved down to Roseville Ca with the chix (my 3 girls, Kari, Holli and Mayah Karis daughter) its about 2 hrs from Palo Alto. So she lived fairly close to Stanford. Palo Alto is BEAUTIFUL, oh my gosh wait til you see it!! If I could move ANYWHERE it would be there. It is VERY VERY expensive, so be prepared to pay ALOT at the gocery store!!! Yes we lived at the hometel as they call it and it is right across the street from the hospital. It's a nice place. Stanford hospital is, well VERY different from the hospital Kari goes to which is in SF. The nurses are almost all from the phillipines (nothing wrong with that), the rooms are not the best in my opinion, and what makes me very angry is that they were doing major construction outside the hospital which dug up the earth and Kari caught aspergillis from that which has caused her ALOT of grief! They did not in my opinion take the required precautions where that was concerned. The first time we had a false alarm, when we got there they had decided that the lungs were not healthy enough. Then on Christmas eve 2003 we got "the call" and she was transplanted on xmas day. The helicopter was delayed which was transporting the lungs so they were in that solution longer than they should have been and consequently after tx she had "wet lungs". She had a very hard time, and ended up with a trach tube and was in there for a total of 4 1/2 mos. then she was doing GOOD for awhile and it was so amazing Liza!!! she was NORMAL! and it was so weird but its funny how fast you forget the sick days before tx. then she started rejecting w/chronic an make a long story short by January of 06 she was on the list again. it wasn't easy to get another one either. she was near death i feel and then on January 25, 06 she got a single tx. this time she had a reperfusion injury during tx and had a hard time again. this time this lung was sick from the get go. no rejection really but the injury was severe. they had said that the right lung from the first tx would just "go to sleep" but two days ago test results revealed that the right lung has 60 % function and that the newer one is so damaged and is stealing 02 and blood from the right one!!! its making me CRAZY!!! son NOW they are contemplating what to do. by the way, Kari became so disgusted w/ Stanford that she made the decision to once again be hospitalized in SF at CPMC when she gets sick. she felt that Stanfor was trying to "sweep her under the rug" and be done with her because her case was a failure. just because she won't just give up and die quietly!!! so now UCSF is actually considering doing a third on her because heres the thing...Kari is VERY VERY VERY TOUGH!!! everyone who knows her is just blown away by her. you can see pics of her if you like just go to a website that some friends started lifefundforkarirankin.com. I really hope with all my heart that you guys do not have to go through what we did. if it goes good it is very GOOD, and if bad, very BAD. the first set of lungs were too big and sat in that solution too long and the second lung was injured during tx (HOW???) so she got the shaft both times and it sucks. say some prayers that she can get a third because she WOULD survive and hey third times a charm right? Take care and talk to ya soon.

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

 

[karismom]

Hi Liza <img src="i/expressions/face-icon-small-happy.gif" border="0">

Well we are all originally from Reno, Nevada, but Nevada Medicaid does not cover lung tx's so my ex husband (with whom i remain a GOOD friend) moved down to Roseville Ca with the chix (my 3 girls, Kari, Holli and Mayah Karis daughter) its about 2 hrs from Palo Alto. So she lived fairly close to Stanford. Palo Alto is BEAUTIFUL, oh my gosh wait til you see it!! If I could move ANYWHERE it would be there. It is VERY VERY expensive, so be prepared to pay ALOT at the gocery store!!! Yes we lived at the hometel as they call it and it is right across the street from the hospital. It's a nice place. Stanford hospital is, well VERY different from the hospital Kari goes to which is in SF. The nurses are almost all from the phillipines (nothing wrong with that), the rooms are not the best in my opinion, and what makes me very angry is that they were doing major construction outside the hospital which dug up the earth and Kari caught aspergillis from that which has caused her ALOT of grief! They did not in my opinion take the required precautions where that was concerned. The first time we had a false alarm, when we got there they had decided that the lungs were not healthy enough. Then on Christmas eve 2003 we got "the call" and she was transplanted on xmas day. The helicopter was delayed which was transporting the lungs so they were in that solution longer than they should have been and consequently after tx she had "wet lungs". She had a very hard time, and ended up with a trach tube and was in there for a total of 4 1/2 mos. then she was doing GOOD for awhile and it was so amazing Liza!!! she was NORMAL! and it was so weird but its funny how fast you forget the sick days before tx. then she started rejecting w/chronic an make a long story short by January of 06 she was on the list again. it wasn't easy to get another one either. she was near death i feel and then on January 25, 06 she got a single tx. this time she had a reperfusion injury during tx and had a hard time again. this time this lung was sick from the get go. no rejection really but the injury was severe. they had said that the right lung from the first tx would just "go to sleep" but two days ago test results revealed that the right lung has 60 % function and that the newer one is so damaged and is stealing 02 and blood from the right one!!! its making me CRAZY!!! son NOW they are contemplating what to do. by the way, Kari became so disgusted w/ Stanford that she made the decision to once again be hospitalized in SF at CPMC when she gets sick. she felt that Stanfor was trying to "sweep her under the rug" and be done with her because her case was a failure. just because she won't just give up and die quietly!!! so now UCSF is actually considering doing a third on her because heres the thing...Kari is VERY VERY VERY TOUGH!!! everyone who knows her is just blown away by her. you can see pics of her if you like just go to a website that some friends started lifefundforkarirankin.com. I really hope with all my heart that you guys do not have to go through what we did. if it goes good it is very GOOD, and if bad, very BAD. the first set of lungs were too big and sat in that solution too long and the second lung was injured during tx (HOW???) so she got the shaft both times and it sucks. say some prayers that she can get a third because she WOULD survive and hey third times a charm right? Take care and talk to ya soon.

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

 

[karismom]

Hi Liza <img src="i/expressions/face-icon-small-happy.gif" border="0">

Well we are all originally from Reno, Nevada, but Nevada Medicaid does not cover lung tx's so my ex husband (with whom i remain a GOOD friend) moved down to Roseville Ca with the chix (my 3 girls, Kari, Holli and Mayah Karis daughter) its about 2 hrs from Palo Alto. So she lived fairly close to Stanford. Palo Alto is BEAUTIFUL, oh my gosh wait til you see it!! If I could move ANYWHERE it would be there. It is VERY VERY expensive, so be prepared to pay ALOT at the gocery store!!! Yes we lived at the hometel as they call it and it is right across the street from the hospital. It's a nice place. Stanford hospital is, well VERY different from the hospital Kari goes to which is in SF. The nurses are almost all from the phillipines (nothing wrong with that), the rooms are not the best in my opinion, and what makes me very angry is that they were doing major construction outside the hospital which dug up the earth and Kari caught aspergillis from that which has caused her ALOT of grief! They did not in my opinion take the required precautions where that was concerned. The first time we had a false alarm, when we got there they had decided that the lungs were not healthy enough. Then on Christmas eve 2003 we got "the call" and she was transplanted on xmas day. The helicopter was delayed which was transporting the lungs so they were in that solution longer than they should have been and consequently after tx she had "wet lungs". She had a very hard time, and ended up with a trach tube and was in there for a total of 4 1/2 mos. then she was doing GOOD for awhile and it was so amazing Liza!!! she was NORMAL! and it was so weird but its funny how fast you forget the sick days before tx. then she started rejecting w/chronic an make a long story short by January of 06 she was on the list again. it wasn't easy to get another one either. she was near death i feel and then on January 25, 06 she got a single tx. this time she had a reperfusion injury during tx and had a hard time again. this time this lung was sick from the get go. no rejection really but the injury was severe. they had said that the right lung from the first tx would just "go to sleep" but two days ago test results revealed that the right lung has 60 % function and that the newer one is so damaged and is stealing 02 and blood from the right one!!! its making me CRAZY!!! son NOW they are contemplating what to do. by the way, Kari became so disgusted w/ Stanford that she made the decision to once again be hospitalized in SF at CPMC when she gets sick. she felt that Stanfor was trying to "sweep her under the rug" and be done with her because her case was a failure. just because she won't just give up and die quietly!!! so now UCSF is actually considering doing a third on her because heres the thing...Kari is VERY VERY VERY TOUGH!!! everyone who knows her is just blown away by her. you can see pics of her if you like just go to a website that some friends started lifefundforkarirankin.com. I really hope with all my heart that you guys do not have to go through what we did. if it goes good it is very GOOD, and if bad, very BAD. the first set of lungs were too big and sat in that solution too long and the second lung was injured during tx (HOW???) so she got the shaft both times and it sucks. say some prayers that she can get a third because she WOULD survive and hey third times a charm right? Take care and talk to ya soon.

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

 

[madisonsmom]

Lisa,
I 've lookked online for the 3rd transplant story and can't seem to find it. I know it happened though 'cause my daughter's doc brought it up and said something about how unusual it is. I think it happened at a hospital in Chicago.
I will continue to look. I hear what your saying about your daughter's plight. It's very common for the healthcare community to turn on patients when they don't agree with them or continue to ask for more. I understand some of what happens from the healthcare side but have felt completly let down as mother of a very sick patient. ( not always but enough to know when it happens) I'm an ICU RN and see this attitude from some of the MDs and nurses at times at work. I feel that there is a real breakdown of humanity at times.When I think of the inappropriate way certain situationsl have been handled in my daughters case and some that I've wittnessed as an RN it makes me ashamed to be part of the offending side. Don't get me wrong I am very sensitive to being a patient advocate, but there's only so much you can do. One thing I know is true is that as soon as any MD or RN goes through "the system" themselves or with a family member they change their tune pretty quickly. The problem is that most of the time their illnesses are not life long and they just get their feet wet, then quickly forget once it's over.When I read what you wrote about your daughter and her wanting the 3rd transplant, I think of the CF foundation and their promise patients "support their decsions about transplant." It goes along with giving the patient "the best care at the best hospital" I know this isn't in the foundations controll but the directors of the CF clinics are made well aware of the care the CF Foundation expects.

I 'm not trying to say that all of the medical community is bad or against us, for the most part I feel that they strive to deliver good care. God knows we have so many directives from all kinds of organizations that give us a stamp of approval if we follow all of their directives. I think we have lost some truley important factors along the way,though.

I truley hope and pray that things work out for your daughter.

Kathy

 

[madisonsmom]

Lisa,
I 've lookked online for the 3rd transplant story and can't seem to find it. I know it happened though 'cause my daughter's doc brought it up and said something about how unusual it is. I think it happened at a hospital in Chicago.
I will continue to look. I hear what your saying about your daughter's plight. It's very common for the healthcare community to turn on patients when they don't agree with them or continue to ask for more. I understand some of what happens from the healthcare side but have felt completly let down as mother of a very sick patient. ( not always but enough to know when it happens) I'm an ICU RN and see this attitude from some of the MDs and nurses at times at work. I feel that there is a real breakdown of humanity at times.When I think of the inappropriate way certain situationsl have been handled in my daughters case and some that I've wittnessed as an RN it makes me ashamed to be part of the offending side. Don't get me wrong I am very sensitive to being a patient advocate, but there's only so much you can do. One thing I know is true is that as soon as any MD or RN goes through "the system" themselves or with a family member they change their tune pretty quickly. The problem is that most of the time their illnesses are not life long and they just get their feet wet, then quickly forget once it's over.When I read what you wrote about your daughter and her wanting the 3rd transplant, I think of the CF foundation and their promise patients "support their decsions about transplant." It goes along with giving the patient "the best care at the best hospital" I know this isn't in the foundations controll but the directors of the CF clinics are made well aware of the care the CF Foundation expects.

I 'm not trying to say that all of the medical community is bad or against us, for the most part I feel that they strive to deliver good care. God knows we have so many directives from all kinds of organizations that give us a stamp of approval if we follow all of their directives. I think we have lost some truley important factors along the way,though.

I truley hope and pray that things work out for your daughter.

Kathy

 

[madisonsmom]

Lisa,
I 've lookked online for the 3rd transplant story and can't seem to find it. I know it happened though 'cause my daughter's doc brought it up and said something about how unusual it is. I think it happened at a hospital in Chicago.
I will continue to look. I hear what your saying about your daughter's plight. It's very common for the healthcare community to turn on patients when they don't agree with them or continue to ask for more. I understand some of what happens from the healthcare side but have felt completly let down as mother of a very sick patient. ( not always but enough to know when it happens) I'm an ICU RN and see this attitude from some of the MDs and nurses at times at work. I feel that there is a real breakdown of humanity at times.When I think of the inappropriate way certain situationsl have been handled in my daughters case and some that I've wittnessed as an RN it makes me ashamed to be part of the offending side. Don't get me wrong I am very sensitive to being a patient advocate, but there's only so much you can do. One thing I know is true is that as soon as any MD or RN goes through "the system" themselves or with a family member they change their tune pretty quickly. The problem is that most of the time their illnesses are not life long and they just get their feet wet, then quickly forget once it's over.When I read what you wrote about your daughter and her wanting the 3rd transplant, I think of the CF foundation and their promise patients "support their decsions about transplant." It goes along with giving the patient "the best care at the best hospital" I know this isn't in the foundations controll but the directors of the CF clinics are made well aware of the care the CF Foundation expects.

I 'm not trying to say that all of the medical community is bad or against us, for the most part I feel that they strive to deliver good care. God knows we have so many directives from all kinds of organizations that give us a stamp of approval if we follow all of their directives. I think we have lost some truley important factors along the way,though.

I truley hope and pray that things work out for your daughter.

Kathy

 

[karismom]

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">