bad Dr. Visit

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moxie1

Guest
Mike,
<br />
<br />First of all, I don't believe that this is your new baseline. The doctors do not know everything and you CAN increase your pfts. You might just be in a rough spot that will get better over time. Do you exercise? Do strength training? Are you compliant with your treatments?
<br />
<br />Have you looked into more natural treatments?
<br />To name a few, n-acetyl cysteine, oil of oregano (taken by mouth, not nebulized), Vitamin D3, and magnesium are some things that have helped me. I do not take them all, just a few. I try different things (one at a time), see how my body reacts, and then decide whether to continue or not.
<br />
<br />My FEV1 is on an incline, not a decline, which it had been. I am 34 years old (35 next month), I've dealt with hemoptysis and have cultured the worst kind of cepacia for over 15 years. My FEV1 at last visit was 74%. If I had listened to everything the doctors told me, my health would be alot worse right now. I love my doctor and listen very carefully to his advice. Still, there are times when I listen to myself more. I know my body better than anyone else.
<br />
<br />Check out sharktank.org Several individuals are trying transdermal BITC (benzyl isothiocyanate). The theory is that it gets a protein working that does the same thing as our faulty CFTR. If it works, we won't need gene therapy or Vertex. Read Melanie's Blog on this site (start at the beginning). She explains things much better than I ever could.
 
T

theLostMiler

New member
Ymikale, Her name is Patti and she has a username of something like "transplant mommy" or something. She has actually had 2 lung transplants and I believe the 2nd one was also the liver transplant.

To the original poster,

It sounds bad, it does. You are still at at least half lung function! It is my understanding that NO bacteria should only be treated with one antibiotic!? It is normally at least 2, preferable 3. You have a wife (Plus! Plus! Plus!) Just b/c it will be difficult to find a center willing to do a double lung and liver transplant doesnt mean there arent hospitals out there that do it. I had to look a bit harder than most b/c of my difficult bugs that can pose a threat after transplant, but guess what? I found one and its still on my side of the country. And if yours isnt, well isnt that the best opportunity to travel you've ever had?

I totally understand the need to "vent" so if you must keep going! I am not denying that I dont ever get down, a lot. I am not like some other cf'ers (who I do like btw), but seem to be positive soo much more than me (to where its almost like they only think about kittens and rainbows and unicorns).... its a tough disease, we have the right to be pissed we have it somedays. Not that any of us are looking for a pity party (though admittedly, for me, it helps to hear someone say, "You know, it is pretty rough" to which I say "Hallejuah! Thank you for acknowledging that fact.".

But hopefully after your getaway you will awake for 'new' eyes, and you can see you still have plenty to fight with. I might suggest if possible, get a new doctor! I cant believe he would be so depressing towards you just b/c your lung function is at 50%. My fiance always tells me that who cares what lung function you have, but you can make the part that does work, do a better job of exchanging oxygen/CO2 then that helps too. Obviously you are going to be limited w/ the lung function, but you can do things like exercise etc, that will help your lungs become better as the actual process of breathing.

I hate hearing this phrase when I just need to be sad, and mad and angry... but there is always someone worse off then you...

PS: if you need to get some antidepressants, then do that too, it should help.
 
T

theLostMiler

New member
Ymikale, Her name is Patti and she has a username of something like "transplant mommy" or something. She has actually had 2 lung transplants and I believe the 2nd one was also the liver transplant.

To the original poster,

It sounds bad, it does. You are still at at least half lung function! It is my understanding that NO bacteria should only be treated with one antibiotic!? It is normally at least 2, preferable 3. You have a wife (Plus! Plus! Plus!) Just b/c it will be difficult to find a center willing to do a double lung and liver transplant doesnt mean there arent hospitals out there that do it. I had to look a bit harder than most b/c of my difficult bugs that can pose a threat after transplant, but guess what? I found one and its still on my side of the country. And if yours isnt, well isnt that the best opportunity to travel you've ever had?

I totally understand the need to "vent" so if you must keep going! I am not denying that I dont ever get down, a lot. I am not like some other cf'ers (who I do like btw), but seem to be positive soo much more than me (to where its almost like they only think about kittens and rainbows and unicorns).... its a tough disease, we have the right to be pissed we have it somedays. Not that any of us are looking for a pity party (though admittedly, for me, it helps to hear someone say, "You know, it is pretty rough" to which I say "Hallejuah! Thank you for acknowledging that fact.".

But hopefully after your getaway you will awake for 'new' eyes, and you can see you still have plenty to fight with. I might suggest if possible, get a new doctor! I cant believe he would be so depressing towards you just b/c your lung function is at 50%. My fiance always tells me that who cares what lung function you have, but you can make the part that does work, do a better job of exchanging oxygen/CO2 then that helps too. Obviously you are going to be limited w/ the lung function, but you can do things like exercise etc, that will help your lungs become better as the actual process of breathing.

I hate hearing this phrase when I just need to be sad, and mad and angry... but there is always someone worse off then you...

PS: if you need to get some antidepressants, then do that too, it should help.
 
T

theLostMiler

New member
Ymikale, Her name is Patti and she has a username of something like "transplant mommy" or something. She has actually had 2 lung transplants and I believe the 2nd one was also the liver transplant.
<br />
<br />To the original poster,
<br />
<br />It sounds bad, it does. You are still at at least half lung function! It is my understanding that NO bacteria should only be treated with one antibiotic!? It is normally at least 2, preferable 3. You have a wife (Plus! Plus! Plus!) Just b/c it will be difficult to find a center willing to do a double lung and liver transplant doesnt mean there arent hospitals out there that do it. I had to look a bit harder than most b/c of my difficult bugs that can pose a threat after transplant, but guess what? I found one and its still on my side of the country. And if yours isnt, well isnt that the best opportunity to travel you've ever had?
<br />
<br />I totally understand the need to "vent" so if you must keep going! I am not denying that I dont ever get down, a lot. I am not like some other cf'ers (who I do like btw), but seem to be positive soo much more than me (to where its almost like they only think about kittens and rainbows and unicorns).... its a tough disease, we have the right to be pissed we have it somedays. Not that any of us are looking for a pity party (though admittedly, for me, it helps to hear someone say, "You know, it is pretty rough" to which I say "Hallejuah! Thank you for acknowledging that fact.".
<br />
<br />But hopefully after your getaway you will awake for 'new' eyes, and you can see you still have plenty to fight with. I might suggest if possible, get a new doctor! I cant believe he would be so depressing towards you just b/c your lung function is at 50%. My fiance always tells me that who cares what lung function you have, but you can make the part that does work, do a better job of exchanging oxygen/CO2 then that helps too. Obviously you are going to be limited w/ the lung function, but you can do things like exercise etc, that will help your lungs become better as the actual process of breathing.
<br />
<br />I hate hearing this phrase when I just need to be sad, and mad and angry... but there is always someone worse off then you...
<br />
<br />PS: if you need to get some antidepressants, then do that too, it should help.
 
T

Transplantmommy

New member
Sorry that I did not see this post earlier as I have not been here in a while.

Mike, I truly think that you need to get a second opinion! Where do you live (what country/state)? I live in NY and was told in November 2004 that I needed to look into a bilateral lung and liver transplant. My CF doc called Cleveland Clinic after some searching and even though they had never done lungs and liver at the same time, they wanted to see me for evaluations. I started my evaluations in June 2005, then found out I was pregnant in August, went through with the pregnancy and then was listed for a bilateral lung and liver transplant on August 24, 2006.

I waited for 5 months and the day after my transplant doctors told me they were going to take me off of the liver transplant list because I needed the lungs so badly, I was told that they had a match and I was getting my bilateral lung and liver transplant!! The surgery took 9.5 hours (no complications) and I am Cleveland Clinic's very first bilateral lung and liver transplant patient...January 31, 2007. They have done 3 more of these types of surgeries since mine and I have met 2 of the other patients. The third one had some other problems and sadly, didn't make it.

There is also a center in California (UCSF I believe) who recently did a bilateral lung and liver transplant. I think she is almost 2 years out from her transplant and she was the first person to have that tx there.

Don't let your doctor tell you that it can't be done. It is very possible!!! There have been almost 30 bilateral lung and liver transplants performed in the US...I don't know about other countries. If you have a facebook account, add me there. www.facebook.com/transplantmommy

Take care and if you have any questions...ask away!
 
T

Transplantmommy

New member
Sorry that I did not see this post earlier as I have not been here in a while.

Mike, I truly think that you need to get a second opinion! Where do you live (what country/state)? I live in NY and was told in November 2004 that I needed to look into a bilateral lung and liver transplant. My CF doc called Cleveland Clinic after some searching and even though they had never done lungs and liver at the same time, they wanted to see me for evaluations. I started my evaluations in June 2005, then found out I was pregnant in August, went through with the pregnancy and then was listed for a bilateral lung and liver transplant on August 24, 2006.

I waited for 5 months and the day after my transplant doctors told me they were going to take me off of the liver transplant list because I needed the lungs so badly, I was told that they had a match and I was getting my bilateral lung and liver transplant!! The surgery took 9.5 hours (no complications) and I am Cleveland Clinic's very first bilateral lung and liver transplant patient...January 31, 2007. They have done 3 more of these types of surgeries since mine and I have met 2 of the other patients. The third one had some other problems and sadly, didn't make it.

There is also a center in California (UCSF I believe) who recently did a bilateral lung and liver transplant. I think she is almost 2 years out from her transplant and she was the first person to have that tx there.

Don't let your doctor tell you that it can't be done. It is very possible!!! There have been almost 30 bilateral lung and liver transplants performed in the US...I don't know about other countries. If you have a facebook account, add me there. www.facebook.com/transplantmommy

Take care and if you have any questions...ask away!
 
T

Transplantmommy

New member
Sorry that I did not see this post earlier as I have not been here in a while.
<br />
<br />Mike, I truly think that you need to get a second opinion! Where do you live (what country/state)? I live in NY and was told in November 2004 that I needed to look into a bilateral lung and liver transplant. My CF doc called Cleveland Clinic after some searching and even though they had never done lungs and liver at the same time, they wanted to see me for evaluations. I started my evaluations in June 2005, then found out I was pregnant in August, went through with the pregnancy and then was listed for a bilateral lung and liver transplant on August 24, 2006.
<br />
<br />I waited for 5 months and the day after my transplant doctors told me they were going to take me off of the liver transplant list because I needed the lungs so badly, I was told that they had a match and I was getting my bilateral lung and liver transplant!! The surgery took 9.5 hours (no complications) and I am Cleveland Clinic's very first bilateral lung and liver transplant patient...January 31, 2007. They have done 3 more of these types of surgeries since mine and I have met 2 of the other patients. The third one had some other problems and sadly, didn't make it.
<br />
<br />There is also a center in California (UCSF I believe) who recently did a bilateral lung and liver transplant. I think she is almost 2 years out from her transplant and she was the first person to have that tx there.
<br />
<br />Don't let your doctor tell you that it can't be done. It is very possible!!! There have been almost 30 bilateral lung and liver transplants performed in the US...I don't know about other countries. If you have a facebook account, add me there. www.facebook.com/transplantmommy
<br />
<br />Take care and if you have any questions...ask away!
 
M

mike0122

New member
First I want to thank everyone for your inputs and encouragement.

The docs concern was no one would take me because of liver cirrosis. However, I may not have mentioned that my LFT's are just a hair away from normal and have been stable for almost 15 years. I had my spleen removed and a shunt put in. Since that time, I've had the stable LFT's. However, because I do have the liver complication, he thinks that I would not be taken. I am not under any current consideration of a liver transplant and hopefully will never be.

I do agree from the above stories that my past liver should not cause an issue with selection. I'm also getting some of the GSH supplement and will look deeper into some of the others that CF patients are using.

Someone asked where I live, I live close to Dayton. However, I'm strongly considering a visit to the CF center in Columbus, Ohio. I'm on IV meds right now and should finish them in a week. After that I'm going to make an appointment and see if I can get a copy of my shadow chart from my current clinic.

I do want to mention the doc did show me all my sputum sensitivities for the last year and how the sensitivities have reduced for all the antibiotics tested. I think it is time to start sending my tests away for synergy testing.

I just had lunch with the person that used to be my doctor from when I was 6 weeks old under her retirement in my mid teenage years. I wish she could come out of retirement <img src="i/expressions/face-icon-small-smile.gif" border="0"> She was one of the best CF doctors ever and will never be replaced. I'm lucky to have her to get an outside doctors opinion.
 
M

mike0122

New member
First I want to thank everyone for your inputs and encouragement.

The docs concern was no one would take me because of liver cirrosis. However, I may not have mentioned that my LFT's are just a hair away from normal and have been stable for almost 15 years. I had my spleen removed and a shunt put in. Since that time, I've had the stable LFT's. However, because I do have the liver complication, he thinks that I would not be taken. I am not under any current consideration of a liver transplant and hopefully will never be.

I do agree from the above stories that my past liver should not cause an issue with selection. I'm also getting some of the GSH supplement and will look deeper into some of the others that CF patients are using.

Someone asked where I live, I live close to Dayton. However, I'm strongly considering a visit to the CF center in Columbus, Ohio. I'm on IV meds right now and should finish them in a week. After that I'm going to make an appointment and see if I can get a copy of my shadow chart from my current clinic.

I do want to mention the doc did show me all my sputum sensitivities for the last year and how the sensitivities have reduced for all the antibiotics tested. I think it is time to start sending my tests away for synergy testing.

I just had lunch with the person that used to be my doctor from when I was 6 weeks old under her retirement in my mid teenage years. I wish she could come out of retirement <img src="i/expressions/face-icon-small-smile.gif" border="0"> She was one of the best CF doctors ever and will never be replaced. I'm lucky to have her to get an outside doctors opinion.
 
M

mike0122

New member
First I want to thank everyone for your inputs and encouragement.
<br />
<br />The docs concern was no one would take me because of liver cirrosis. However, I may not have mentioned that my LFT's are just a hair away from normal and have been stable for almost 15 years. I had my spleen removed and a shunt put in. Since that time, I've had the stable LFT's. However, because I do have the liver complication, he thinks that I would not be taken. I am not under any current consideration of a liver transplant and hopefully will never be.
<br />
<br />I do agree from the above stories that my past liver should not cause an issue with selection. I'm also getting some of the GSH supplement and will look deeper into some of the others that CF patients are using.
<br />
<br />Someone asked where I live, I live close to Dayton. However, I'm strongly considering a visit to the CF center in Columbus, Ohio. I'm on IV meds right now and should finish them in a week. After that I'm going to make an appointment and see if I can get a copy of my shadow chart from my current clinic.
<br />
<br />I do want to mention the doc did show me all my sputum sensitivities for the last year and how the sensitivities have reduced for all the antibiotics tested. I think it is time to start sending my tests away for synergy testing.
<br />
<br />I just had lunch with the person that used to be my doctor from when I was 6 weeks old under her retirement in my mid teenage years. I wish she could come out of retirement <img src="i/expressions/face-icon-small-smile.gif" border="0"> She was one of the best CF doctors ever and will never be replaced. I'm lucky to have her to get an outside doctors opinion.
 
C

CFkitty

New member
I just wanted to say that this might not necessarily be your new baseline. This may be just a bad phase. I often take longer than a few weeks after IVs to feel better, and sometimes as long as six months for my PFTs to rebound.

I know this might sound silly, but thinking negatively can make you lose your will to fight. Fifty percent, a few weeks after IVs, when you are normally higher (what is your usual baseline?) does NOT mean you need to start planning your death.

Please, take the time to recover physically and mentally. Talk to someone if you need to. I am often traumatized after a hospitalization; I sometimes obsess and dream about dying. It's natural. Believe me, I've been there. I have despaired. I wanted to just chuck it all in and give up. Being in the hospital and being sick is scary. The aftermath is like PTSD - hard to shake. But DON'T GIVE UP.

Do something new each day. Learn to count to ten in Swahili, take a five minute walk down the street, make a picnic on your living room floor and play cards with your wife. Read ridiculous magazine articles to each other, go out for ice cream. Every little moment adds up. "Live" each day, even in small ways. Try to make a new memory each day. While it might not bring you back to baseline, you might just find a million more reasons to keep fighting.

As for your liver affecting your ability to be listed for lung TX, contact every transplant center you can. You never know - one might be willing to accept you. Good luck to you and your wife.
 
C

CFkitty

New member
I just wanted to say that this might not necessarily be your new baseline. This may be just a bad phase. I often take longer than a few weeks after IVs to feel better, and sometimes as long as six months for my PFTs to rebound.

I know this might sound silly, but thinking negatively can make you lose your will to fight. Fifty percent, a few weeks after IVs, when you are normally higher (what is your usual baseline?) does NOT mean you need to start planning your death.

Please, take the time to recover physically and mentally. Talk to someone if you need to. I am often traumatized after a hospitalization; I sometimes obsess and dream about dying. It's natural. Believe me, I've been there. I have despaired. I wanted to just chuck it all in and give up. Being in the hospital and being sick is scary. The aftermath is like PTSD - hard to shake. But DON'T GIVE UP.

Do something new each day. Learn to count to ten in Swahili, take a five minute walk down the street, make a picnic on your living room floor and play cards with your wife. Read ridiculous magazine articles to each other, go out for ice cream. Every little moment adds up. "Live" each day, even in small ways. Try to make a new memory each day. While it might not bring you back to baseline, you might just find a million more reasons to keep fighting.

As for your liver affecting your ability to be listed for lung TX, contact every transplant center you can. You never know - one might be willing to accept you. Good luck to you and your wife.
 
C

CFkitty

New member
I just wanted to say that this might not necessarily be your new baseline. This may be just a bad phase. I often take longer than a few weeks after IVs to feel better, and sometimes as long as six months for my PFTs to rebound.
<br />
<br />I know this might sound silly, but thinking negatively can make you lose your will to fight. Fifty percent, a few weeks after IVs, when you are normally higher (what is your usual baseline?) does NOT mean you need to start planning your death.
<br />
<br />Please, take the time to recover physically and mentally. Talk to someone if you need to. I am often traumatized after a hospitalization; I sometimes obsess and dream about dying. It's natural. Believe me, I've been there. I have despaired. I wanted to just chuck it all in and give up. Being in the hospital and being sick is scary. The aftermath is like PTSD - hard to shake. But DON'T GIVE UP.
<br />
<br />Do something new each day. Learn to count to ten in Swahili, take a five minute walk down the street, make a picnic on your living room floor and play cards with your wife. Read ridiculous magazine articles to each other, go out for ice cream. Every little moment adds up. "Live" each day, even in small ways. Try to make a new memory each day. While it might not bring you back to baseline, you might just find a million more reasons to keep fighting.
<br />
<br />As for your liver affecting your ability to be listed for lung TX, contact every transplant center you can. You never know - one might be willing to accept you. Good luck to you and your wife.
 
M

MamatoAlexa

New member
Oh boy can I relate! I had a crappy clinic appointment on July 19th! My PFT's are usually in the 70's. A few weeks ago they were down to 50%. I was not feeling awful so we did a two week course of oral abx and a pred taper. I was feeling great. July 19th rolls around, I was one week off oral abx and my PFT's were still 50%. My doctor was very quick to tell me that it is only a number. How I feel is more important than the number. He also reminded me that there is a possibility that the number will go back up. I often sag down low and then several weeks after abx will bounce back up. It is upsetting to say the least. I was an emotional wreck until later this week. My husband has been stressed and upset. It is hard on all of us. There are no easy answers. Come and vent. I find talking to others Cf'ers is often the best medicine and other times I need to take a break from everything but my own CF and just focus on life and my family.
(((HUGS)))
 
M

MamatoAlexa

New member
Oh boy can I relate! I had a crappy clinic appointment on July 19th! My PFT's are usually in the 70's. A few weeks ago they were down to 50%. I was not feeling awful so we did a two week course of oral abx and a pred taper. I was feeling great. July 19th rolls around, I was one week off oral abx and my PFT's were still 50%. My doctor was very quick to tell me that it is only a number. How I feel is more important than the number. He also reminded me that there is a possibility that the number will go back up. I often sag down low and then several weeks after abx will bounce back up. It is upsetting to say the least. I was an emotional wreck until later this week. My husband has been stressed and upset. It is hard on all of us. There are no easy answers. Come and vent. I find talking to others Cf'ers is often the best medicine and other times I need to take a break from everything but my own CF and just focus on life and my family.
(((HUGS)))
 
M

MamatoAlexa

New member
Oh boy can I relate! I had a crappy clinic appointment on July 19th! My PFT's are usually in the 70's. A few weeks ago they were down to 50%. I was not feeling awful so we did a two week course of oral abx and a pred taper. I was feeling great. July 19th rolls around, I was one week off oral abx and my PFT's were still 50%. My doctor was very quick to tell me that it is only a number. How I feel is more important than the number. He also reminded me that there is a possibility that the number will go back up. I often sag down low and then several weeks after abx will bounce back up. It is upsetting to say the least. I was an emotional wreck until later this week. My husband has been stressed and upset. It is hard on all of us. There are no easy answers. Come and vent. I find talking to others Cf'ers is often the best medicine and other times I need to take a break from everything but my own CF and just focus on life and my family.
<br />(((HUGS)))
 
J

jamiebug

New member
I know you have had a lot of responses, but just want to add a little. . ..

I had 50% FEV1 for YEARS!!!! No joke. I was in the 50's all through my late teen/early 20's. I started taking 7% hypertonic saline and they went back up to like 62% but like I said I sat around 50% for like 5 years and I had CEPACIA the whole time (supposed to be resistant). In fact, most doctors predictions are usually a little pessimistic, but I think they have to be "real". Maybe they are too 'real' sometimes.

Also I have had my share of Doctors resort to the "scare tactic" to try to get us CF patients to be more diligent or whatever. Believe me, Lung Transplant is probably many, many years down the road for you. <img src="i/expressions/face-icon-small-smile.gif" border="0"> For what my opinion is worth anyways~ Good Luck. . .I do agree with get away if you need to, and also just live your life the way you want to!
 
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