5/27/2014 2:53 PM
By Becca Atherton
After the frustrations in my last post, the plans to go to the new hospital were canceled because I got the stomach flu. This weekend I am headed up to California for a quick doctor appointment and to see my brother's girlfriend graduation! (Note: this post was written and submitted last week before the trip.) I don't expect too many tests or big changes to come from the appointment. I am meeting with my doctor to ask him questions about the upcoming heart cath that the new hospital I wrote about it my last post wants to do.
The plans for the cath have changed slightly over this past few weeks. At first they wanted to do a right heart cath. Now they are saying they want a more in-depth heart cath. Besides anesthesia and my lungs being a problem for me with a heart cath, I am worried about having irregular heartbeats because of the cath—something I already have enough trouble with. It's been a few months now since I've had any irregular heartbeats, which is wonderful, but my doctors and I agree that a cath could make them happen again. This is why the doctors up in California have been so hesitant to do a cath until it was absolutely necessary.
My doctor said that he would be glad to talk to me and answer any questions my family and I have about the cath that the new hospital wants to do. 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?
Other questions are not so simple: Why won’t this hospital let my regular team in California do the cath? 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 the California team trusts them and think it's alright for me to go ahead with it, then I will. I trust their judgment 100%.
But I'm worried about if they say no. What do I do then? Tell the new hospital 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 the new hospital will agree to take me on?
And what if the arrhythmias start again and I'm not in California where they know how to stop them? What if I get irregular heartbeats 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 and the new hospital doesn't take me into their program? Then I've done all of these tests and gotten irregular heartbeats for nothing. Or I could get sick again and the new hospital tells me I need to be listed, which means I have to move far away, another option I don't particularly like either.
I just hope that the team in California will help to ease my nerves and give me some answers. While I want answers… I am also dreading what they might be. I'm ready to go on vacation to Hawaii and put this all behind me while I tan (more like burn) on the beach and relax. Just a few more weeks.
Becca Atherton was born with tetralogy of Fallot, pulmonary atresia and pulmonary hypertension. She was adopted as a baby into a large multiracial family, where she is the second youngest. Becca was given a 13% chance of surviving to the age of five, but she is 21 years old and a college sophomore at her local community college. She loves to read, perform American Sign Language to music and write on her blog.
1 comment(s) so far...
By Samina on
8/25/2014 6:26 PM
Re: More Questions
I was reading your post and normally I'm not a big online person but felt I needed to tell you about an incident I had. First of all, I would advise you to not worry about upsetting your doctors...they're not the ones living with CHD, you are. I am a nurse and actually work with the cardiologist(s) who follow me. There came a time when I did not agree with what they were doing so I went to another center (which happens to be our competitor) because I felt that we were missing something and wanted another opinion. Needless to say, the competitor got to the cause of my problems and I ended up having two procedures with their doctor. I think they understood why I did what I did. They still continue to be very supportive of me and don't treat me any differently because I sought care with their competitor. CHD and all that comes with it is still not always clear and sometimes another group and a different opinion will help get to the root of the problem. Whatever you decide, just be sure you're both comfortable with having the procedure (or not having it) and that you feel confident in the doctor(s) who are treating you. I hope everything worked out for you!