Bad Dr Appt Today

Sevenstars · Jan 22, 2008

I was wondering that too. It all seems a bit fishy. You don't have FEV1 of 80-90% all your life then suddenly need a transplant. It's also weird your doc suddenly wants you to have a port when you've only been on IVs twice EVER. Usually Ports are only considered if you do IVs 3-4+ times a year.

Do you remember what your PFTs were like? What bugs your cultures show? It feels like we missed something important here. (or maybe your doctor is >_>)

If you do ever get a port though, I have to say they are very convenient. Mine is in my upper thigh, so if you lead an active lifestyle and don't want it to show, I'd look into that. It's practically invisible when not accessed, and even when it is accessed, it is easily hidden under pants/skirt. (and no strange cords sticking out anywhere)

Sevenstars · Jan 22, 2008

I was wondering that too. It all seems a bit fishy. You don't have FEV1 of 80-90% all your life then suddenly need a transplant. It's also weird your doc suddenly wants you to have a port when you've only been on IVs twice EVER. Usually Ports are only considered if you do IVs 3-4+ times a year.

Do you remember what your PFTs were like? What bugs your cultures show? It feels like we missed something important here. (or maybe your doctor is >_>)

If you do ever get a port though, I have to say they are very convenient. Mine is in my upper thigh, so if you lead an active lifestyle and don't want it to show, I'd look into that. It's practically invisible when not accessed, and even when it is accessed, it is easily hidden under pants/skirt. (and no strange cords sticking out anywhere)

Sevenstars · Jan 22, 2008

I was wondering that too. It all seems a bit fishy. You don't have FEV1 of 80-90% all your life then suddenly need a transplant. It's also weird your doc suddenly wants you to have a port when you've only been on IVs twice EVER. Usually Ports are only considered if you do IVs 3-4+ times a year.

Do you remember what your PFTs were like? What bugs your cultures show? It feels like we missed something important here. (or maybe your doctor is >_>)

If you do ever get a port though, I have to say they are very convenient. Mine is in my upper thigh, so if you lead an active lifestyle and don't want it to show, I'd look into that. It's practically invisible when not accessed, and even when it is accessed, it is easily hidden under pants/skirt. (and no strange cords sticking out anywhere)

Sevenstars · Jan 22, 2008

I was wondering that too. It all seems a bit fishy. You don't have FEV1 of 80-90% all your life then suddenly need a transplant. It's also weird your doc suddenly wants you to have a port when you've only been on IVs twice EVER. Usually Ports are only considered if you do IVs 3-4+ times a year.

Do you remember what your PFTs were like? What bugs your cultures show? It feels like we missed something important here. (or maybe your doctor is >_>)

If you do ever get a port though, I have to say they are very convenient. Mine is in my upper thigh, so if you lead an active lifestyle and don't want it to show, I'd look into that. It's practically invisible when not accessed, and even when it is accessed, it is easily hidden under pants/skirt. (and no strange cords sticking out anywhere)

Sevenstars · Jan 22, 2008

I was wondering that too. It all seems a bit fishy. You don't have FEV1 of 80-90% all your life then suddenly need a transplant. It's also weird your doc suddenly wants you to have a port when you've only been on IVs twice EVER. Usually Ports are only considered if you do IVs 3-4+ times a year.

Do you remember what your PFTs were like? What bugs your cultures show? It feels like we missed something important here. (or maybe your doctor is >_>)

If you do ever get a port though, I have to say they are very convenient. Mine is in my upper thigh, so if you lead an active lifestyle and don't want it to show, I'd look into that. It's practically invisible when not accessed, and even when it is accessed, it is easily hidden under pants/skirt. (and no strange cords sticking out anywhere)

Marjolein · Jan 22, 2008

I'm sorry to hear you had a bad doc's appointment and have to go on iv's again.
I have never had picc lines myself, I always had the regular venflons at home untill I got my port about 10 years ago. This was because they couldn't get a venflon in anymore and when they were in my vein would be irritated in no time so it had to come out in a few days instead of the 3 weeks i usually had them.

I have to say i loved my port! Everything was under my clothes and you didn't see a thing. Well you could see the little bag I had around my waist, where the pump was in, but the line went there under my clothes so you couldn't see that. My first port was just above my right breast and my second port was just above my left breast.

I'm also sorry to hear your doctor brought up transplant, that must have been very hard to hear. Can I ask how low your fev1 is? Has it gone lower very fast the past few months? I was sent to my tx clinic when my fev1 was about 30%. However I went very stable and I went active on the list again when i was at about 20%.
What I want to say that I hope that you will get better and/or that your health will be stable for a long long time! And that a transplant won't be in your near future.

The placement of my port wasn't a big deal at all. I didn't havea general aneastatic, I was awake and they only numbed the spot where they placed my port. I could go home the same day. I was on 1000 mg of Paracetamol 2 or 3 times a day I think and that helped for the pain. I had pain that same day but the days after the surgery were ok. They also used my port right away.

Good luck with everything sweetie, I hope this course will do you very very good!
Big hug! Marjolein

Marjolein · Jan 22, 2008

I'm sorry to hear you had a bad doc's appointment and have to go on iv's again.
I have never had picc lines myself, I always had the regular venflons at home untill I got my port about 10 years ago. This was because they couldn't get a venflon in anymore and when they were in my vein would be irritated in no time so it had to come out in a few days instead of the 3 weeks i usually had them.

I have to say i loved my port! Everything was under my clothes and you didn't see a thing. Well you could see the little bag I had around my waist, where the pump was in, but the line went there under my clothes so you couldn't see that. My first port was just above my right breast and my second port was just above my left breast.

I'm also sorry to hear your doctor brought up transplant, that must have been very hard to hear. Can I ask how low your fev1 is? Has it gone lower very fast the past few months? I was sent to my tx clinic when my fev1 was about 30%. However I went very stable and I went active on the list again when i was at about 20%.
What I want to say that I hope that you will get better and/or that your health will be stable for a long long time! And that a transplant won't be in your near future.

The placement of my port wasn't a big deal at all. I didn't havea general aneastatic, I was awake and they only numbed the spot where they placed my port. I could go home the same day. I was on 1000 mg of Paracetamol 2 or 3 times a day I think and that helped for the pain. I had pain that same day but the days after the surgery were ok. They also used my port right away.

Good luck with everything sweetie, I hope this course will do you very very good!
Big hug! Marjolein

Marjolein · Jan 22, 2008

I'm sorry to hear you had a bad doc's appointment and have to go on iv's again.
I have never had picc lines myself, I always had the regular venflons at home untill I got my port about 10 years ago. This was because they couldn't get a venflon in anymore and when they were in my vein would be irritated in no time so it had to come out in a few days instead of the 3 weeks i usually had them.

I have to say i loved my port! Everything was under my clothes and you didn't see a thing. Well you could see the little bag I had around my waist, where the pump was in, but the line went there under my clothes so you couldn't see that. My first port was just above my right breast and my second port was just above my left breast.

I'm also sorry to hear your doctor brought up transplant, that must have been very hard to hear. Can I ask how low your fev1 is? Has it gone lower very fast the past few months? I was sent to my tx clinic when my fev1 was about 30%. However I went very stable and I went active on the list again when i was at about 20%.
What I want to say that I hope that you will get better and/or that your health will be stable for a long long time! And that a transplant won't be in your near future.

The placement of my port wasn't a big deal at all. I didn't havea general aneastatic, I was awake and they only numbed the spot where they placed my port. I could go home the same day. I was on 1000 mg of Paracetamol 2 or 3 times a day I think and that helped for the pain. I had pain that same day but the days after the surgery were ok. They also used my port right away.

Good luck with everything sweetie, I hope this course will do you very very good!
Big hug! Marjolein

Marjolein · Jan 22, 2008

I'm sorry to hear you had a bad doc's appointment and have to go on iv's again.
I have never had picc lines myself, I always had the regular venflons at home untill I got my port about 10 years ago. This was because they couldn't get a venflon in anymore and when they were in my vein would be irritated in no time so it had to come out in a few days instead of the 3 weeks i usually had them.

I have to say i loved my port! Everything was under my clothes and you didn't see a thing. Well you could see the little bag I had around my waist, where the pump was in, but the line went there under my clothes so you couldn't see that. My first port was just above my right breast and my second port was just above my left breast.

I'm also sorry to hear your doctor brought up transplant, that must have been very hard to hear. Can I ask how low your fev1 is? Has it gone lower very fast the past few months? I was sent to my tx clinic when my fev1 was about 30%. However I went very stable and I went active on the list again when i was at about 20%.
What I want to say that I hope that you will get better and/or that your health will be stable for a long long time! And that a transplant won't be in your near future.

The placement of my port wasn't a big deal at all. I didn't havea general aneastatic, I was awake and they only numbed the spot where they placed my port. I could go home the same day. I was on 1000 mg of Paracetamol 2 or 3 times a day I think and that helped for the pain. I had pain that same day but the days after the surgery were ok. They also used my port right away.

Good luck with everything sweetie, I hope this course will do you very very good!
Big hug! Marjolein

Marjolein · Jan 22, 2008

I'm sorry to hear you had a bad doc's appointment and have to go on iv's again.
I have never had picc lines myself, I always had the regular venflons at home untill I got my port about 10 years ago. This was because they couldn't get a venflon in anymore and when they were in my vein would be irritated in no time so it had to come out in a few days instead of the 3 weeks i usually had them.

I have to say i loved my port! Everything was under my clothes and you didn't see a thing. Well you could see the little bag I had around my waist, where the pump was in, but the line went there under my clothes so you couldn't see that. My first port was just above my right breast and my second port was just above my left breast.

I'm also sorry to hear your doctor brought up transplant, that must have been very hard to hear. Can I ask how low your fev1 is? Has it gone lower very fast the past few months? I was sent to my tx clinic when my fev1 was about 30%. However I went very stable and I went active on the list again when i was at about 20%.
What I want to say that I hope that you will get better and/or that your health will be stable for a long long time! And that a transplant won't be in your near future.

The placement of my port wasn't a big deal at all. I didn't havea general aneastatic, I was awake and they only numbed the spot where they placed my port. I could go home the same day. I was on 1000 mg of Paracetamol 2 or 3 times a day I think and that helped for the pain. I had pain that same day but the days after the surgery were ok. They also used my port right away.

Good luck with everything sweetie, I hope this course will do you very very good!
Big hug! Marjolein

kayleesgrandma · Jan 22, 2008

I am so sorry to hear about this...I hope that as time goes on, and if you can talk to other's here, that you will feel a little more comfortable with a port. I have the same questions as the others--why so sudden? It sounds like you needed either more aggressive abx therapy or IV therapy--why a port all of a sudden, as opposed to a PICC--when you only have IV's twice a year?

I hope that this all works out for you, and that by mentioning "transplant", it gives you a chance to start thinking--I think that is all the doctor meant by bringing the subject up...

Please feel free to come and vent your feelings--we are here for you<img src="i/expressions/heart.gif" border="0">

kayleesgrandma · Jan 22, 2008

I am so sorry to hear about this...I hope that as time goes on, and if you can talk to other's here, that you will feel a little more comfortable with a port. I have the same questions as the others--why so sudden? It sounds like you needed either more aggressive abx therapy or IV therapy--why a port all of a sudden, as opposed to a PICC--when you only have IV's twice a year?

I hope that this all works out for you, and that by mentioning "transplant", it gives you a chance to start thinking--I think that is all the doctor meant by bringing the subject up...

Please feel free to come and vent your feelings--we are here for you<img src="i/expressions/heart.gif" border="0">

kayleesgrandma · Jan 22, 2008

I am so sorry to hear about this...I hope that as time goes on, and if you can talk to other's here, that you will feel a little more comfortable with a port. I have the same questions as the others--why so sudden? It sounds like you needed either more aggressive abx therapy or IV therapy--why a port all of a sudden, as opposed to a PICC--when you only have IV's twice a year?

I hope that this all works out for you, and that by mentioning "transplant", it gives you a chance to start thinking--I think that is all the doctor meant by bringing the subject up...

Please feel free to come and vent your feelings--we are here for you<img src="i/expressions/heart.gif" border="0">

kayleesgrandma · Jan 22, 2008

I am so sorry to hear about this...I hope that as time goes on, and if you can talk to other's here, that you will feel a little more comfortable with a port. I have the same questions as the others--why so sudden? It sounds like you needed either more aggressive abx therapy or IV therapy--why a port all of a sudden, as opposed to a PICC--when you only have IV's twice a year?

I hope that this all works out for you, and that by mentioning "transplant", it gives you a chance to start thinking--I think that is all the doctor meant by bringing the subject up...

Please feel free to come and vent your feelings--we are here for you<img src="i/expressions/heart.gif" border="0">

kayleesgrandma · Jan 22, 2008

I am so sorry to hear about this...I hope that as time goes on, and if you can talk to other's here, that you will feel a little more comfortable with a port. I have the same questions as the others--why so sudden? It sounds like you needed either more aggressive abx therapy or IV therapy--why a port all of a sudden, as opposed to a PICC--when you only have IV's twice a year?

I hope that this all works out for you, and that by mentioning "transplant", it gives you a chance to start thinking--I think that is all the doctor meant by bringing the subject up...

Please feel free to come and vent your feelings--we are here for you<img src="i/expressions/heart.gif" border="0">

jamie6girl · Jan 22, 2008

I was always very healthy growing up, and when I went on IV's as a teen, my mom and dad made a very big deal out of it. I have never gone into the hospital other than when I was a baby when I was diagnosed. So I guess part of it was I always had too much "pride" to go on IV's and it was a big deal when I did in Oct. I feel like if my family would have handled it differently when I was a teen, I would have been more open to it later. However, I feel like I was made to feel ashamed of it and ever since then, I've tried to do everything possible to keep from having to do them. So in Oct I decided that I needed to get over myself and just do it. I hope this clears up your questions. Thanks for your support and your advice..

jamie6girl · Jan 22, 2008

I was always very healthy growing up, and when I went on IV's as a teen, my mom and dad made a very big deal out of it. I have never gone into the hospital other than when I was a baby when I was diagnosed. So I guess part of it was I always had too much "pride" to go on IV's and it was a big deal when I did in Oct. I feel like if my family would have handled it differently when I was a teen, I would have been more open to it later. However, I feel like I was made to feel ashamed of it and ever since then, I've tried to do everything possible to keep from having to do them. So in Oct I decided that I needed to get over myself and just do it. I hope this clears up your questions. Thanks for your support and your advice..

jamie6girl · Jan 22, 2008

I was always very healthy growing up, and when I went on IV's as a teen, my mom and dad made a very big deal out of it. I have never gone into the hospital other than when I was a baby when I was diagnosed. So I guess part of it was I always had too much "pride" to go on IV's and it was a big deal when I did in Oct. I feel like if my family would have handled it differently when I was a teen, I would have been more open to it later. However, I feel like I was made to feel ashamed of it and ever since then, I've tried to do everything possible to keep from having to do them. So in Oct I decided that I needed to get over myself and just do it. I hope this clears up your questions. Thanks for your support and your advice..

jamie6girl · Jan 22, 2008

I was always very healthy growing up, and when I went on IV's as a teen, my mom and dad made a very big deal out of it. I have never gone into the hospital other than when I was a baby when I was diagnosed. So I guess part of it was I always had too much "pride" to go on IV's and it was a big deal when I did in Oct. I feel like if my family would have handled it differently when I was a teen, I would have been more open to it later. However, I feel like I was made to feel ashamed of it and ever since then, I've tried to do everything possible to keep from having to do them. So in Oct I decided that I needed to get over myself and just do it. I hope this clears up your questions. Thanks for your support and your advice..

jamie6girl · Jan 22, 2008

I was always very healthy growing up, and when I went on IV's as a teen, my mom and dad made a very big deal out of it. I have never gone into the hospital other than when I was a baby when I was diagnosed. So I guess part of it was I always had too much "pride" to go on IV's and it was a big deal when I did in Oct. I feel like if my family would have handled it differently when I was a teen, I would have been more open to it later. However, I feel like I was made to feel ashamed of it and ever since then, I've tried to do everything possible to keep from having to do them. So in Oct I decided that I needed to get over myself and just do it. I hope this clears up your questions. Thanks for your support and your advice..

Bad Dr Appt Today

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