After a good week another bad info.

[antonb]

After 81/2 month on ibrutinib i posted last week ,that my labs were great and CT showed a dramatic shrinkage of lymph nodes..

I did a echocardiogram ...rutine , my heart seems to be strong and working normal, but i have a mild pulmonary insufficiency . So this was unexpected kind of discouraging and a slapp in my face.....Dr says that we will control it , but i didn´t expect this, as i live in a third floor by stairs and i feel normal going up and down stairs ............Is like one can´t have a break ...

[Shedman]

I feel your pain!

I'd like to come away from the doctors with one fewer medicines, instead, I am still finding the discussion is about which of several new drugs is most appropriate.. and although I have some grounds for thinking they might not be necessary (ease with stairs, reducing resting heart rate, and so on), the discussion indicates I am medically incorrect.

I wish to be less medicalised - this would suit my spirits and desired self-image, but I know another new drug is on the cards for a different health review in August.. All in some way related to CLL consequences.

Follow-up to pulmonary embolism required a fancy CT scan. My lungs are not quite right. (Echocardiogram as well, soon..)

When I got to the scan room, it occurred to me that I simply did not know why this could not wait for the CT scan on end of CLL treatment..?

I apologised, but kicked off (with frustration and doubt) all the same.

The head of nuclear medicine came out. Nicest guy you could wish to meet.. He explained. It was necessary -- the best scan option according to latest medical science and development.. The scan took a few minutes.

At some point I hope my part in the world of medicine will become smaller; of course I am grateful for all the clever treatments.. And the quality of care received.

But like you, I'd prefer a 'de-escalation' of medical need and interventions and surprises.

On the upside, I too feel pretty good right now.

[LovecuresCLL]

Maybe there are things you can do to improve lung function? If you smoke, quit. Maybe a nebulizer?

Maybe regular exercise?

Get a air filter for you bedroom to remove particulates such as pollen and dust and other allergens from the air in bedroom..

These are little things you can do to “baby” your lungs.

Maybe getting flu shot so you don’t get bronchitis or pneumonia in winter.

Wish I could help more. Best wishes and good luck,

-John

[Jm954 Administrator in reply to LovecuresCLL]

Good suggestions but this is a problem with the valve in his heart John, not a lot he can do.

Jackie

[Jm954 Administrator]

There always seems to be something else around the corner doesn't there!

It can't be too bad if you can get up three flights of stairs with no problem so the valve can't be leaking too much. Take some comfort from that even though it was an unwelcome surprise to find out.

Keep running up those stairs, all the best

Jackie

[LovecuresCLL]

I did not know about the valve. Valve replacement surgery can correct a defect. My brother in law had that done and he is doing great.

[MsLockYourPosts Passed Volunteer]

Many do well with a minor leaky valve problem. Is this your mitral valve? If it worsens valve repair is an option rather than valve replacement in many cases.