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Brian
Member
Username: Bdog
Post Number: 12
Registered: 05-2010
| | Posted on Thursday, May 20, 2010 - 12:19 pm: | 
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Hey folks,
Like I said yesterday I am new to this. Can I get some replies on how many drugs per day I am looking at with a TX. I have heard many different #'s. In the binder they gave me at the clinic there are many drugs that seem to do the same thing: ex- 4-5 immunosupression drugs. Are all of these taken or are these the ones they have to choose from to find the right one for the person?
Thanks in advance,
Brian
PS again thanks for all the informative posts yesterday. The amount of responses were incredible.
Norton, Ohio
Lung Transplant Candidate
5-12-2010 |
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Scott
Member
Username: Auphd
Post Number: 25
Registered: 12-2009
| | Posted on Thursday, May 20, 2010 - 12:26 pm: |
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Hi Brian,
Laura takes prednisone, rapamune, prograf, nexium, aspirin, multi-vitamin, manganese, calcium, azithromycin, bactrim, nystatin, coumadin, advair and sometimes ambien and xanax.
The first three are the rejection meds. Most people come home I think on prednisone, cellcept and prograf but the cellcept made laura really sick.
Scott
Husband of Double Lung Transplant - 11/5/2009 UPenn
Sarcoidosis/Pulmonary Hypertension |
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Russ
Member
Username: Rjwitte
Post Number: 38
Registered: 06-2009
| | Posted on Thursday, May 20, 2010 - 06:41 pm: |
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Brian,
This is kind of a loaded question ... the only drugs that you MUST take long term are anti-rejection medication. I don't know many people that take more than 2 different anti-rejection medications long term. Some only one. Prednisone is given early on and then they try to reduce/wean it completely as quickly as possible because of the side effects. They have gotten MUCH better with that.
Every individual is very different, the closer you are to transplant, generally the more different drugs and the higher doses you take. But it all depends on your genetics and how you metabolize the drugs. Sometimes the high doses at the beginning cause secondary issues (high blood pressure, high cholesterol or high blood sugar) that need to be treated until the dose can be reduced as your body adepts to the new organ.
Some people as they get farther out get more drugs because they start to have other (normal) aging related conditions. Almost every center recommends additional supplementation as well, like Calcium, Magnesium, Multi-Vitamin, etc.
Finding the right balance is an art form ... the science of it is still very new. Every doctor/recipient team works together to find what works for them.
So the how many? Anywhere from 1 to 10 or more, depending on other things happening, but 1 or 2 directly related to the transplant. I know that's rather ambiguous, but it is what it is ... 
best wishes,
Russ - Heart Txp, 1-1-1999
Univ. of Michigan |
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Rocket Heart
Member
Username: Rocketheart583
Post Number: 348
Registered: 08-2007
| | Posted on Thursday, May 20, 2010 - 06:51 pm: |
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Good answer Russ. I see you were transplanted at U of M - me too! Nice to have you on the forum - hope to hear from you often.
Rocket Heart
Tom Emahiser
Waterville, Oh
Heart Failure
Heart Txplt 1/26/05 University of Michigan |
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ajs
Member
Username: Ajs
Post Number: 290
Registered: 03-2008
| | Posted on Thursday, May 20, 2010 - 07:13 pm: |
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One thing I will correct Russ on from his nice answer, is that lung transplant people rarely get totally off prednisone. I got to 5 mg after 14 months, which is where I am now and will be. I was also able to get off most insulin once I got down to 5. I just do one shot of Lantus at night now, and pills before I eat.
Double-Lung transplant at Duke on 10/27/08
Pulmonary Fibrosis with traction bronchiectasis
Live each day as if you were living forever, and live each moment as if it were your last.
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Brian
Member
Username: Bdog
Post Number: 14
Registered: 05-2010
| | Posted on Thursday, May 20, 2010 - 07:27 pm: |
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Thanks- That helps a lot. I'm just trying to prepare myself for everything.
I have always liked to keep my ducks in a row, although with this kind of thing I realize you are gonna get one out of line here and there. Hell-My row would have been real straight had I never smoked. The cards were stacked against me from the start as far as that goes. Every person in my family smoked when I was growing up. My parents both smoked two packs a day since before I was born. If you think about it I was exposed to 4 packs a day since birth till I was 18. Not to mention the pack a day I smoked starting at 15 or 16. Funny thing is neither of my parents ever had any problems with there lungs. Well.....it is what it is, I'm just rambling now.
Your answers really did clear a lot up!!!!!!!
Thanks,
Brian
Norton, Ohio
Lung Transplant Candidate
5-12-2010 |
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BreathinSteven
Forum Leader
Username: Breathinsteven
Post Number: 2076
Registered: 11-2004
| | Posted on Thursday, May 20, 2010 - 08:03 pm: |
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I agree with Russ & ajs... A good deal also depends on your underlying disease and whether that disease will still impact other parts of your system post transplant -- and your journey with drugs and interactions in the years after transplant...
I have cystic fibrosis -- so I have issues tied to that for which I still take a few medications for... (CF impacts more than just our lungs -- but it's most often the lungs that kill us...)
Also -- there will be drugs that you might take for 2-3-6 months post transplant for prophylactic purposes... With lungs, they often put us on an anti-fungal for 3-6 months, and they could continue that if you prove positive for a fungal infection or, as chaneeni mentioned, if you live in certain areas of the country... (I don't think Ohio is one of them...) You'll often be on an antiviral for 3-6 months... If you are CMV or EBV negative, and your donor was CMV or EBV positive, you might be on antivirals much longer than 6 months -- and possibly forever...
A decent number of centers seem to keep us lungers on a 3 drug cocktail of immunosuppressants -- one of them usually being prednisone... I agree with ajs that most of us lungers do not get off of prednisone. Which brings up more drugs in the future -- prednisone (and sometimes Prograf aggrivates the situation) throws a percentage of us into diabetes -- which could bring on insulin or oral medications or both... And, it causes issues with calcium and sometimes ends up leaching it from your bones -- which may put you on an osteoporosis medication and supplimental calcium...
And some of the drugs gradually cause other issues, like hypertension and high cholesterol... Rapamune is a good one for jacking up your cholesterol -- so that may ultimately put you on a statin like Lipitor... And you may ultimately need some type of high blood pressure med... Gradually, we often start getting drugs to offset the side effects the other drugs cause...
As you guessed, and like Scott confirmed -- they show you 4-5-6 immunosuppressant possibilities to get you familiar with some of them... But most centers have a protocol that they start with -- and if you have an issue with one or more of the drugs, they can switch you to something else...
Many of them have side effects -- and many of the side effects you get accustomed to, or they disappear, you learn to tolerate them, or they pop you on another drug to deal with that if the medication is deemed necessary -- and that could be part of the reason why you seem to be getting so many different answers as to how many drugs you'll be taking...
When push comes to shove -- though some have, and they're usually addressed, I haven't experienced problems or side effects that were anywhere near as bad as the inability to breathe... For me -- I just passed 10 years with my beautiful, new lungs and they blow my freakin' mind every single day... I hope you get what you need quickly -- and I hope your journey is smooth...
Love, Steve
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Brian
Member
Username: Bdog
Post Number: 15
Registered: 05-2010
| | Posted on Thursday, May 20, 2010 - 08:28 pm: |
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Wow!!! 10 years. That blows MY mind. When a TX was first mentioned, the first thing that comes to mind is 6mo-5yrs. I am so glad there are those of you that have been able to grasp longevity. Thanks for your input. All these answers help a lot for preparation.
Thanks,
Brian
Norton, Ohio
Lung Transplant Candidate
5-12-2010 |
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Karen R.
Forum Leader
Username: Relivkaren
Post Number: 4476
Registered: 07-2007
| | Posted on Thursday, May 20, 2010 - 10:28 pm: |
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Brian:
Once again, you have gotten some really great answers. The drugs are so individualized that it's so hard to give you a direct answer.
I can tell you what I take - that might help. I take prograf, medrol (same as prednisone), valcyte, sporanox, vitamin D, calcium, magniesium, protonix, xanax, folic acid, baby asprin, probiotics, multivitamin, and dapsone. I think that's all?!?!? LOL! It seems like a lot, but it really isn't that bad. I always say that it's a very small price to pay for being able to breathe!!
Hope that helps!
God Bless!
Karen
Dx: BOOP - May 2006. Rediagnosed with Bronchiolitis Obliterans Nov. 2006
Double lung transplant on Dec. 1st, 2009
Cleveland Clinic
Ohio, USA
Be kinder than necessary because everyone you meet is fighting some kind of battle. |
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gratefuldeb
Member
Username: Gratefuldeb
Post Number: 126
Registered: 05-2009
| | Posted on Friday, May 21, 2010 - 05:02 pm: |
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Hi Brian,
You have received some great info already, so I won't add anything about the types of drugs you may be on. To get a better idea about what all this looks like, I can remember taking 57 pills each day shortly after transplant! Mind you, that's not 57 different types of drugs, it's the total number of pills swallowed! I was taking the highest number in the morning, a few at different times during the day, then another big load at night. It took a little getting used to, but wasn't too bad. I'm at 18 months post heart tx, and I now take about half that number. You'll also see your pharmacy bill go down dramatically as time goes on. I felt like cheering when I was finally able to discontinue the Valcyte and my anti-fungal meds, as those co-pays were horrendous!
Best of luck,
Deb
Debra
Heart Tx 9/08
Stanford University Medical Center
Dx: Right sided heart failure due to a rare form of muscular dystrophy
I have a beautiful new heart from a wonderful donor named Robin, to whom I will be forever grateful.
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Russ
Member
Username: Rjwitte
Post Number: 41
Registered: 06-2009
| | Posted on Friday, May 21, 2010 - 05:15 pm: |
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Grateful Deb ... You're making me smile ... I remember looking at the drug cost for Cytovene after my transplant and realized that I paid less for my last car than the insurance company was billed for a month of treatment! Thank goodness I only had to pay the horrendous co-pay!
Russ - Heart Txp, 1-1-1999
Univ. of Michigan |
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