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View Full Version : Where/how are post transplant patients treated?



JustaCFmom
02-12-2013, 01:27 AM
Hi :confused:
I just wanted to know if CF ers are still treated at CF clinics after they have undergone a transplant? Are they still seen by a multidisciplinary team?

What is life after transplant like?

Thanks!

Daverog75
02-12-2013, 12:52 PM
hello,

I am currently on the list but I have a twin brother who had a double lung transplant just over 4 years ago, and he is mainly treated now by the transplant centre. He does still have CF but only needs to see the cf team once a year now.

beautifulsoul
02-12-2013, 01:16 PM
Hi there,

To answer your first question, yes CFers are still treated at CF clinics after transplants. (where I'm at anyways) Where else would they boot us? lol :D If you go to a transplant center already, many of the CF doctors are very knowledgable about transplants as well as CF and everything that comes along with it (hence being a transplant center AND CF clinic) There is really no difference. CF/Transplant doctors are the same thing. (at specific centers) You might see the actual surgeon a few times right after transplant but that's all. At my clinic my team works amazingly well together.

Question two. Just like with CF, every one can lead a different road after transplant. The first year after transplant is known to be the riskiest part for infection, rejection and other medical issues. The main similarity for everyone after transplant is the anti-rejection medication like, Prograf, Cellcept, Prednisone, etc. Everyone gets Prograf levels monthly or every few months to make sure the level of medicine is not too high or too low. Just like you have to do with some other CF meds. Follow ups with the clinic every 3-6 months. MANY bronchoscopies! If, after 2 years (depending on the center) the results of Bronch's are clean (no rejection/infection) then, no more unless a problem arises. Those are the only major things I can think of at the moment. I hope I could answer some of your questions

Side note: All other organs still have CF. Lung transplants only replace the lungs, not everything else. For example, you still have to take enzymes or insulin if you use that too.

If you have any other questions feel free to PM me. I'm way past everything I mentioned above as I'm almost 6 years post Transplant this March :) I'm doing very well. I see my transplant team on Thursday. I enjoy my life being "free" being able to breathe and walk, swim, talk, laugh...I try to cherish every moment I can with the people I love. I thank god for my donor family (L)

edited to add : You're probably going to get various answers from people. I would keep in mind that not every transplant center does things the exact same way.

Liza
02-12-2013, 05:48 PM
As Amber said, every center does things differently.

At Stanford, you followup with the tx team post tx and don't go back to the CF clinic, at least for adults. Everything from tx forward has to be cross checked with your tx team. Every single medication you take, OTC & prescription. You will and can be followed by other specialists for other non tx issues but most things will need to be "approved" by your team. For example, you'll go to a dermatologist yearly, well woman exams if your female, endocrine (if needed) etc. But, say you have chronic pain issues and go to pain management (not necessarily tx related, say migraines) and they want to do a treatment, depending on that treatment (say injections of some sort), it would have to be "approved" by the tx team.

We were surprised when they said, even eye drops had to be approved. It all sounds intimidating but only at first. Once you know what you can take/use, it's not so bad. It's a learning process. Now, if your normal location is not where your tx center is, then yes, you are followed by your CF team who works closely with your tx team. This was how it was done for my daughter. We/she, did not live near her tx center and so was seen by her CF docs, who then reported and worked closely with her tx team, on every single issue. We/she were very adamant about following the rules on that, after all, she wanted to take the best care of her gift that she could.

BTW, if your CF clinic doesn't require wearing a mask, my post tx advice: ALWAYS wear at least a P95 when you enter a hospital or clinic environment. That yellow paper mask was referred to as a "show" mask by her tx clinic. My other daughter uses a P95 when she goes to clinic or the hospital even though she's not a tx patient.

As for post tx life. Free! Life is free! Take advantage of your new lungs and do everything you can! I've been told by many post transplantees, that they hated running but did so now because they can! What you can and can't do depends on your team. Tatoo's post tx is a giant NO! by just about every team I've heard. Stanford for sure! Scuba diving, snorkling... go for it! Although my daughter team didn't like the idea of sky diving, they didn't forbid it. Public hot tubs are a no no but a privately owned one where you know it's clean and properly maintained was ok.

There's a lot of oral meds to take, but it's all manageable. My daughter said, she'd rather take 30 pills a day in trade for breathing treatments and PT any day. There's a lot to learn when it comes to meds, but you will learn all of the names, brand and generic. It's amazing what you will know by the time you get through the process. As a mom, I started to feel like we should have an honorary degree with all the knowledge we absorb about meds and side effects and interactions (PILLS). I'm sure I didn't fully answer your questions but I hope that I've helped. I hope your kids are doing well and that tx is not in your near future and you're just wondering.

Liza
02-12-2013, 05:58 PM
Oh! If you don't get enough replies, try reposting this in the transplant section too.

beautifulsoul
02-12-2013, 06:07 PM
As Amber said, every center does things differently.

At Stanford, you followup with the tx team post tx and don't go back to the CF clinic, at least for adults. Everything from tx forward has to be cross checked with your tx team. Every single medication you take, OTC & prescription. You will and can be followed by other specialists for other non tx issues but most things will need to be "approved" by your team. For example, you'll go to a dermatologist yearly, well woman exams if your female, endocrine (if needed) etc. But, say you have chronic pain issues and go to pain management (not necessarily tx related, say migraines) and they want to do a treatment, depending on that treatment (say injections of some sort), it would have to be "approved" by the tx team.

Well said Liza. I forgot about the med approval! My center is very strict on that as well. Any meds prescribed by other doctors and even over the counter stuff HAS to be approved by the transplant team...I agree with your daughter, I would rather take a butt load of pills in trade for doing treatments several hours a day.

Also, another thing I just thought of is swimming pools. Be cautious if your kids are wanting to go swimming after transplant. Public pools are very risky with bacteria. My center also gave me a list of foods that are off limits after transplant. I brake the food rules every once in a while and I'm still okay. Not saying it's okay for everyone though. There is also a no tattoo/piercing rule which I also broke 2 years after I had my transplant. :P I have two tattoos. I contacted my center before I got my tattoos to see if they wanted me on extra meds and they told me to do it at my own risk.

Like Liza said, it's a lot to learn but eventually won't be so bad after you've gotten into a daily routine.