Hi Folks, I haven't posted for some time. I was recently taken by ambulance to CCF from a local hospital due to a pulmonary embolism (blood clot in the lung) and pericardial effusion (fluid around the heart). During the course of testing and treatment they found I also have pulmonary hypertension. I had been complaining to my doc that I couldn't even walk 10 feet without being totally out of breath and feeling like I was going to fall down since September. In retrospect, I do believe the episode that landed me in the hospital in April was actually a pulmonary embolism and NOT pneumonia.
The right side of my heart is having a heck of a time getting oxygen to my lungs (pulmonary hypertension), so when I do exert myself, my pulse ox drops quite a bit, hence, the shortness of breath. The only "cure" for pulmonary hypertension is a heart and lung transplant (Ha! of course of which I am certainly not a candidate). They now have medications, continuous infusion, to try to control the pulmonary hypertension. They don't know if it was the Sprycel that caused this chain of events (I'm off it for now), or a URI virus which I had a few weeks before admission, or if the blood clot caused the pulmonary hypertension. I am having a heart catheterization in January to determine the volumes in my heart, and if they are too high, I will be admitted and put on IV medication. Then, they will insert a port-a-cath and pump so I can receive continuous medication infusion to try to control the pulmonary hypertension. The pulmonary doc put me on Aldactone and Demadex to get rid of excess fluid. Wow! What a difference. I've lost at least 15 lbs. and I can walk upstairs without having to pull myself up by the hand rail. I couldn't tolerate the Gleevec and now they are afraid to put me back on the Sprycel, although the oncologists say it is not to blame and the cardiologists say it is the cause........sigh......All the docs said I looked "great" and a pulmonary doc even said I was one of those patients that "fascinate" them. Needless to say, I didn't find that encouraging, it pissed me off. Problem is, when I tell them I'm sick - they don't take me seriously. The tests prove my point. I was so tired of being looked at like a "little Sarah Heartburn" that I put up with the symptoms until I couldn't any longer. Even THEN, my PCP didn't even look at my test results until I called 2 days later and they flipped and told me to get to the hospital immediately because my D-dimer was positive (blood clot). So, to make a very long story even longer..if you have symptoms, demand treatment. If anyone else on Sprycel has had problems like these, I'd like to hear about it. Thank you all for being here, you are my lifeline. Sometimes I feel like I can't trust the docs, but I can trust the wisdom, advice and life experiences shared by all of you. Happy Holidays! Kelly -- [CMLHope] A support group of http://cmlhope.com ------------------------------------------------- You received this message because you are subscribed to the Google Groups "CMLHope" group. To post to this group, send email to [email protected] To unsubscribe from this group, send email to [email protected] For more options, visit this group at http://groups.google.com/group/CMLHope
