Panicking

So I am an ex smoker for 2 plus years who still uses nicorette aka Nicotine Replacement Therapy.

I have never hid this fact from any of my physicians and even during my transplant eval mentioned it to them several times.  It is also listed in my electronic medical records.

I know that most transplant centers require abstaining from tobacco products, and knew that I needed to be clear that I use nicotine replacement.  I assumed if they were concerned about this they would have told me to stop the NRT before my tests.  Despite me mentioning it to them numerous times I was never told I needed to stop so I assumed they would run a more sensitive test for anabasine to differentiate between my NRT and smoking.  I think I may have assumed wrong.

One of the send out labs came back today and they had only tested for nicotine and cotine.  I am now in a panic that this one little detail will stop them from listing me for six months.  I should have assumed they weren't paying close attention when I told them about the nicotine replacement therapy and stopped completely (I started to taper down but stress got the better of me, and IMO I would rather use a safe nicotine replacement product than risk a relapse on smoking.

So now I guess I have to wait in an anxious panic state until Wendsday to see if I now have to wait six months for reconsideration OR if they were aware and will just discount the test.

Unfortunately, my heart is unlikely to make it the six months!  This is definitely on me, I should not have expected them to pay attention or be fully competent on the different test that needed to be preformed to differentiate between the two.

I am upset that each time I brought it up over the last year they never warned me.  Their policy is no tobacco products, it says nothing in regards to nicotine replacement therapy.

So I guess now I have to wait and see on Wendsday if I will be denied listing based on this alone (the rest of my labs look great).

In a total panic, but trying to remind myself what's done is done.


5 Comments

panic

by Julros - 2021-06-12 15:34:27

I am not familiar with your center's requirements, but I should certainly think they will take the seriousness of your cardiac status into consideration. And as you say, you never tried to hide it. 

Was the NRT prescribed? This may make a difference. 

just quit

by new to pace.... - 2021-06-12 17:07:28

If you are that concerned just stop the NRT.  Since, when you get the heart you will not be able to use the NRT nor any tobacco products.. 

 If the stress is causing you problems, just suck on a pacifer.  Will give you something to do.

new to pace

What would I do ?

by Gemita - 2021-06-12 18:11:00

Dear Asully,

I have to be honest with you, I was surprised and concerned to read your message but I am not going to judge you.  I only want you to have the very best chance of a successful outcome and I will continue to support you in whatever way I can.

My feeling is that it might be helpful to write a personal supporting letter to explain your side of the story;  why you started smoking and why you still need NRT.  I wouldn't just leave it for the transplant panel to open your medical file next Wednesday and to be hit by your history of smoking and long term use of NRT.   I feel they would want to be reassured that you realise you are fortunate to be considered for an urgent transplant and that you will not let yourself, your family, your doctors or the donor's family down at this critical stage.  

I believe the transplant authorities will need to be convinced that you will do everything possible to stop smoking, including perhaps trying to stop NRT, to give yourself the best possible chance of staying well with a donor heart and for them to be satisfied that the donor heart is going to a worthy recipient, a recipient who is doing everything in her power to stay well and to treasure the chance of a new, healthier life.  Perhaps your main consultant could also reconfirm your poor cardiac status, the fact that you have never hidden your history of smoking/NRT, and that you are having therapy to stop completely?

With a supporting letter I think you will have a good chance of getting on that wait list and by writing it all down, it will help you to feel less anxious of the outcome next Wednesday.  Did you have a psychiatrist assessment for the heart transplant?  I believe you did.  Did he/she ask about your smoking history?

Whatever you do, please do not panic.  You will just want to smoke even more.  Stay calm, but get your fears out into the open.

The NRT has been prescribed off and on but lately I have just been paying out of pocket.

by asully - 2021-06-12 19:50:22

It was disclosed to them prior the evaluation, and during evaluation and I was not told to discontinue.  My thinking has always been, I've been cigarette free for 2 years, last thing I need right now is to stop a proven successful therapy and risk relapsing on smoking.  I will stop obviously if they have issue, but I am shocked they didn't run the anabasine test since they already had knowledge I took NRT.  I guess we will see Wendsday, it may not be an issue, I may be panicking for no reason.

Yes my psychologist knows about my history and my NRT, my transplant cardiologist has been told numerous times over the last year (he has watched me chew nicorette in front of him), the social worker who did part of my eval was told and mentioned nothing, my carsiothoracic surgeon from my prior sternotomy last November knows, my primary knows.  Y'all are probably right in that I am anxious over nothing.  I reread the "agreement for AFTER listing, it simply states tobacco products which NRT is not and it also says they ask you to abstain once listed from tobacco products (again tobacco not nicotine).  I think I am panicking for no reason, and I suppose I can always offer to pay for the anabasine test to show I am cigarette free.

Hope you're Panicking for No Reason

by Marybird - 2021-06-13 16:06:53

Hi Asully,

I'm sure in your shoes I'd be doing exactly the same thing, from worrying about whether or not I'm a milrinone nonresponder to whether or not my addition to the transplant list will be postponed because of my nicotine patch to anything else I could conjure up that would muddy up my prospects for that much needed heart transplant, so I recognize those panicky feelings very well.

And I have to admit I know next to nothing about milrinone ( except what I've read online), or nicotine patches, so I'm a rank amateur about all this, but just wanted to pass along some thoughts about the process. My hopes are that these will bring another perspective, such as it is, into what you're going through, and maybe bring you a bit of reassurance. That's my hope, anyway.

After I saw your posts here, I read a number of references about heart transplants, from the donor and recipient qualifications, to the care of the organ donor before, and during the process of explanting the organs ( specifically the heart), the care of the heart once it's explanted till it gets into the donor,  the care of the recipient during and after the transplant, and the long term ( actually lifetime) followup care of the recipient.

One of the things I noted that as far as the donor and recipient is concerned, it's very much a case by case basis. They have specific guidelines for both, but whether each guideline is strictly adhered to for each detail to depends on the individual donor and how badly they need the donor's heart. The ideal recipient would be expected to be sick enough to need the transplant, well enough to regain his/her health and thrive after the transplant, have the demonstrated means, ability and willingness to comply with the long long term followup care and regimens, live a reasonably healthful life so as not to undo the good effects of the heart transplant. You have all that, and you're young, a productive member of society, I mean it seems to me you check all those boxes. You've shown a willingness to work with your doctors, comply with the program, and a strong understanding of the process, so how could there be a patient with better qualifications than you have for all this? I'm sure your doctors see it from this perspective.

Sure they have a number of items on that checklist that need to be there, such as cessation of alcohol, tobacco or illicit drug use, as the use of these products are known to compromise the cardiovascular, respiratory and other systems, and their continued use ( or damage from frequent use pre-transplant) tend to mess up the health and functions of the transplanted heart. But I'd have to question whether or the use of a nicotine patch ( which is supposed to be in use to help a smoker stop this habit, no?) would indicate the type of tobacco use that would compromise the health of a transplanted heart? You've mentioned you informed your doctors/care team about using the patch, and said you were told you could keep using it, I'd have to think it might not be as much of a problem as you think it is. Just speculation on my part, of course, and you'll get it all straightened out, I'm sure. But my thoughts are that you're such a stellar candidate otherwise, you need that heart and you'll do great things afterward, that your care team would not let such a thing as a use of a nicotine patch get in the way of the process. Just a thought.

All my best, Mary

 

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