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Question for pwcf post Tx...
- Thread starter LauraM
- Start date
I
IG
Guest
oh boy.
I was told that steriods are a long term deal and because I had double lung I'd be on them forever. I'm not sure if that was just my clinics policy or what.
As for meds.. this is where the oh boy comes in
I'm not going to list dosage...
Vitamin E
Calcium
Actonel
Magnesium
Multivitamin
Creon 20
Cellcept [anti-rejection]
Prednisone [anti-rejection]
Prograf [anti-rejection]
Gancyclovir
Zantac
hm guess not all that really.. I'll eventually be taken off the vitamins when my levels go back to normal. When that'll happen I don't know but I've recently been taken off of vitamin A so who knows.
I was told that steriods are a long term deal and because I had double lung I'd be on them forever. I'm not sure if that was just my clinics policy or what.
As for meds.. this is where the oh boy comes in
I'm not going to list dosage...
Vitamin E
Calcium
Actonel
Magnesium
Multivitamin
Creon 20
Cellcept [anti-rejection]
Prednisone [anti-rejection]
Prograf [anti-rejection]
Gancyclovir
Zantac
hm guess not all that really.. I'll eventually be taken off the vitamins when my levels go back to normal. When that'll happen I don't know but I've recently been taken off of vitamin A so who knows.
Laura,
Most post lungs never get off of prednisone post tx... unless they come up with something new and wonderful.
As far as how much prednisone someone takes.... it ranges from an every other day regime to every day and varies from 5m to 15mg... all depends on person, rejection history. I am on 10mg, due to my rejection history.
As far as other meds I take... I am not typical... I am weird. I win all contests for most meds.. I take 82 pills a day. The norm is more like 28 a day. Also most times by the first year of your transplant, the meds are reduced, and for a couple years this is likely, but happily I can say that meds were decreased in number over the years, but the last couple years they have increased because I now 8 years post and some of the meds are effecting me blood pressure wise, or cholesterol wise, or chronic rejection wise... .taking another med is not a big deal to me... Give me a 1,000 more pills a day to keep me alive. I do not mind.
Here is my award winning list of meds.
Acyclovir
Albuterol Inhaler
Aredia ( IV every three months)
Bactrim DS
Calcium Carbonate
Cellcept
Fish Oil
Flovent Inhaler
Folate
Insulin Humalog
Insulin N
Iron
Magnesium Oxide
Pancreacarb
Paroxetine
Prednisone
Potassium
Prilosec
Prograf
Rapamune
Triamterene/HCTZ
Vitamin ADEK
Zithromycin
Zocor.
They are spread out 8 times a day starting at 7am and ending at 10pm.... .
A small price to pay for living.
Joanne Schum
luckylungsforjo@aol.com
Most post lungs never get off of prednisone post tx... unless they come up with something new and wonderful.
As far as how much prednisone someone takes.... it ranges from an every other day regime to every day and varies from 5m to 15mg... all depends on person, rejection history. I am on 10mg, due to my rejection history.
As far as other meds I take... I am not typical... I am weird. I win all contests for most meds.. I take 82 pills a day. The norm is more like 28 a day. Also most times by the first year of your transplant, the meds are reduced, and for a couple years this is likely, but happily I can say that meds were decreased in number over the years, but the last couple years they have increased because I now 8 years post and some of the meds are effecting me blood pressure wise, or cholesterol wise, or chronic rejection wise... .taking another med is not a big deal to me... Give me a 1,000 more pills a day to keep me alive. I do not mind.
Here is my award winning list of meds.
Acyclovir
Albuterol Inhaler
Aredia ( IV every three months)
Bactrim DS
Calcium Carbonate
Cellcept
Fish Oil
Flovent Inhaler
Folate
Insulin Humalog
Insulin N
Iron
Magnesium Oxide
Pancreacarb
Paroxetine
Prednisone
Potassium
Prilosec
Prograf
Rapamune
Triamterene/HCTZ
Vitamin ADEK
Zithromycin
Zocor.
They are spread out 8 times a day starting at 7am and ending at 10pm.... .
A small price to pay for living.
Joanne Schum
luckylungsforjo@aol.com
I have been taken off of some meds recently so this list is shorter than it used to be:
Prograf
Rapamune
Prednisone (8 mgs)
Acyclovir
Bactrim DS
Ferrous Sulfate
Folic Acid
Multi-Vitamin
Nystatin
Reglan
Zinc Sulfate
Oscal-D
Zantac
ABDEK
Vitamin E
Magnesium Oxide
Vitamin K
Actonel
Vitamin A
Allegra
Zithromax
Cytogam (IV every three months)
Creon 20
Insulin as needed
Really so much easier than the feeding tube, chest pt, and all the cf crap. I'm so much happier in my routine now than i ever was before.
margaret
Double lung tx 11.11.04
Prograf
Rapamune
Prednisone (8 mgs)
Acyclovir
Bactrim DS
Ferrous Sulfate
Folic Acid
Multi-Vitamin
Nystatin
Reglan
Zinc Sulfate
Oscal-D
Zantac
ABDEK
Vitamin E
Magnesium Oxide
Vitamin K
Actonel
Vitamin A
Allegra
Zithromax
Cytogam (IV every three months)
Creon 20
Insulin as needed
Really so much easier than the feeding tube, chest pt, and all the cf crap. I'm so much happier in my routine now than i ever was before.
margaret
Double lung tx 11.11.04
I wanted to bring this post up again because I have been wondering something. I noticed that some of you mentioned IV's every 3 months & was curious if those IV meds are for rejection, infection or something else? I have not had a tx but I guess I figured (through my rose colored glasses-lol) that all nebulized treatments, IVs, CPT, etc would be a thing of the past when you're post tx.
Thanks
Hope
Thanks
Hope
The IV medicine I have every 3 months is Aredia, or Pamidronate... it is for bone density loss.
I have also had IV anitobiotics a few times, when I developed an infection in my lungs... the same drugs that I used pre tx for CF.
Nebulizer, I also have used this, to help with an infection, and also rejection. I developed chronic rejection last year and with that I was congested. Thankfully they put me on some new meds for immune suppression, but I also did the nebulizer with Pulmozyme in hopes it would thin the mucous... it did. I also got my first Vest last year. I never had one pre tx, as my family did my cupping every day, 5 times a day or more. The vest helped to also clear my lungs.
I do not nebulize now, but will if needed.
I am not on any IV antiobiotics, in over a year, but will if needed.
I do use the vest still, just to be on the safe side. I find it relaxing for myself, like a massage... I know a little weird, but maybe it is the reason it allows me to sit down for awhile and not be running around doing errands and household work.
Joanne Schum
luckylungsforjo@aol.com
I have also had IV anitobiotics a few times, when I developed an infection in my lungs... the same drugs that I used pre tx for CF.
Nebulizer, I also have used this, to help with an infection, and also rejection. I developed chronic rejection last year and with that I was congested. Thankfully they put me on some new meds for immune suppression, but I also did the nebulizer with Pulmozyme in hopes it would thin the mucous... it did. I also got my first Vest last year. I never had one pre tx, as my family did my cupping every day, 5 times a day or more. The vest helped to also clear my lungs.
I do not nebulize now, but will if needed.
I am not on any IV antiobiotics, in over a year, but will if needed.
I do use the vest still, just to be on the safe side. I find it relaxing for myself, like a massage... I know a little weird, but maybe it is the reason it allows me to sit down for awhile and not be running around doing errands and household work.
Joanne Schum
luckylungsforjo@aol.com
Hello,
"Aersolized Cyclosporine- experimental anti rejection"...
I have been using this form of anti rejection for approx 8 -9 years. UPMC in Pittsburgh Pa started me on it. I believe they were the first center to "experiment" on this. It is still going thru the approval process with the FDA. Chiron is the main investagator now with it.
One main reason it is being pushed so hard for approval is that the meds go directly to the lungs and in turn doesn't hurt the kidneys anymore like other anti rejection meds. These other meds are so hard on the kidneys, which in time does cause the need for possible kidney transplants later on down the road.
And yes I'm still on the normal anti rejection meds... in my case Neoral type of cyclosporine.
Barry 44CF , tx in June 1996, UPMC Pittsburgh
"Aersolized Cyclosporine- experimental anti rejection"...
I have been using this form of anti rejection for approx 8 -9 years. UPMC in Pittsburgh Pa started me on it. I believe they were the first center to "experiment" on this. It is still going thru the approval process with the FDA. Chiron is the main investagator now with it.
One main reason it is being pushed so hard for approval is that the meds go directly to the lungs and in turn doesn't hurt the kidneys anymore like other anti rejection meds. These other meds are so hard on the kidneys, which in time does cause the need for possible kidney transplants later on down the road.
And yes I'm still on the normal anti rejection meds... in my case Neoral type of cyclosporine.
Barry 44CF , tx in June 1996, UPMC Pittsburgh
mustangmousa
New member
I noticed that Joanne mentioned that she still uses the Vest post transplant. Is this something that alot of you post tx people do? I have a Vest now and my insurance has never paid for it. I was thinking of giving it back to HillRom after my tx since I've had it for free for all these years and thought I wouldn't need it anymore. Will I need it post tx??
I
IG
Guest
I don't use it, and the post - tx people I know don't use it.
Although I have gone on aerosol a few times.
I unfortunately did get rid of my treatment machine after tx and had to get a new one when they decided to do that.
Thank goodness the company provided me with a new one.
As for the vest, we sent it back to the company.
Haven't had to deal with it since then.
Hopefully won't have to anyway.
I'd get rid of the vest.
If you have a nice treatment machine I'd keep it around just in case.
Cause you never know what they might prescribe.
Although I have gone on aerosol a few times.
I unfortunately did get rid of my treatment machine after tx and had to get a new one when they decided to do that.
Thank goodness the company provided me with a new one.
As for the vest, we sent it back to the company.
Haven't had to deal with it since then.
Hopefully won't have to anyway.
I'd get rid of the vest.
If you have a nice treatment machine I'd keep it around just in case.
Cause you never know what they might prescribe.
Hi,
It is Joanne.
I only know one other person who has used the vest since tx... they are further out of tx than I, and have rejection and this was a good safety measure for them.. I am 8 years post tx, and did not get the vest until I was well over 7 years post tx.
So more than likely it will be a thing of the past. I would get rid of it after tx, and if you need one some day, then get another one.. they keep improving too.
Joanne Schum
luckylungsforjo@aol.com
It is Joanne.
I only know one other person who has used the vest since tx... they are further out of tx than I, and have rejection and this was a good safety measure for them.. I am 8 years post tx, and did not get the vest until I was well over 7 years post tx.
So more than likely it will be a thing of the past. I would get rid of it after tx, and if you need one some day, then get another one.. they keep improving too.
Joanne Schum
luckylungsforjo@aol.com
mustangmousa
New member
Thanks for the advice!!