Upcoming Doctor's Appointment

As many of you know, the plans to go to Pittsburgh were canceled due to the fact that I had the stomach flu. This weekend though I am headed up to California for a quick doctors appointment and to see my brother's girlfriend graduate from Curating school! I don't expect too many tests or big changes to come from the doctor appointment this weekend. I am meeting with doctor Feinstein to ask him questions about the upcoming heart cath that Pittsburgh wants to do on me. 
The plans for a heart cath have changed slightly over this past few weeks. At first they wanted to do a right heart cath with me not under anesthesia. Now they are saying they want a full heart cath - which is more invasive than just a right. Besides anesthesia and my lungs being a problem for me with a heart cath, caths are known to cause irregular heart beats - something I already have enough trouble with. It's been a few months now since I've had any irregular heart beats which is wonderful, but my doctors and I agree that a cath could make them happen - again. Which is why the doctors up in California have been so hesitant to do a cath until it was absolutely necessary. 

Dr. Feinstein said that he would be glad to talk to me and answer any questions my family and I have about the cath that Pittsburgh wants to do. (Since we can't seem to get a hold of any of the doctors up there to ask them...). Some of my questions are easy: can they still go through my neck with a full cath? Or are they going to have to use anesthesia on me for it? But other questions not so simple... Why can't Pittsburgh let you guys do it? Is it an ego thing? How am I supposed to trust them when I can't even talk to them? Do you trust them? Do you think I should let them do the cath? If Dr. F and the rest of the team trust them and think it's alright for me to go ahead with it, then I will. I trust their judgement 100%. But I'm worried about if they say no, that they don't trust them or want me to do the cath. What do I do then? Tell Pittsburgh no and then not have a center for the transplant when I need one? 

Or do I go against the doctors I've known and trusted since I was in 6th grade in hopes that maybe Pittsburgh will agree to take me on? And what if the arrhythmias start again because of the cath and I'm not at LPCH where they know how to stop them? What if I get irregular heart beats again after doing the cath and it pulls me back to where my health was back in December? What if I get sick again like I did earlier this year but Pittsburgh doesn't take me into their program? I've done all of these tests and gotten irregular heartbeats for nothing. Or I could get sick again and Pittsburgh tells me I need to be listed, which means I have to move there, another option I don't particularly like either. 

I just hope that Dr. F and the team up there will help to ease my nerves and give me some answers because I am clearly not getting any from Pittsburgh. While I want answers... I am also dreading what they might be. I'm ready to go to Hawaii and put this all behind me while I tan (more like burn) on the beach and relax. Just a few more weeks. 

Hope and Love,


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My Life As A Chronically
Ill Young Adult
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