Might be too late but if sign in today I was wondering what your breathing problems were like before to decided on cytoxan?

My neuro appointment is tomorrow.

Thanks;

scrubbs

Hi Scrubbs,

My breathing was rarely horrible. I occasionally had times where I needed to rest, and be aware that I was breathing properly. I also had occasions where I would awake gurgling and gasping during the night. However, I never was vented or even hospitalized simply for breathing issues.

The big problem with my breathing was my dysphagia. I was so close to choking 24/7. It was only a matter of time before I choked to death or got aspiration pneumonia. I honestly don't know how I avoided pneumonia as I was constantly aspirating stuff. I had times where I couldn't handle saliva. My neuro considered that "crisis."

So, in summary, you don't have to be "vent worthy" to be "cytoxan worthy." You have to add the sum total of your quality of life and multiply it by the risks involved with the proposed treatment and then make the decision.

For me it was a no-brainer. Once it was offered I never waivered.

Good luck with your appt and your decision. Please keep us posted.

4-eyes

Thanks again for responding.

scrubbs