Kate's life with dextro-Transposition of the Great Arteries and Septal Defect.
Kate who has Dextro-Transposition of the Great Arteries along with a Septal Defect has wrote down her life in the form of medical
notes, which we have found very interesting and asked her if we could post it on CHD-UK's website. Kate, has given us permission to
do so and she will give CHD-UK updates to add as and when they occurr.
Please note that the dates are in American.
I wanted to give some of you a run-down of what's going on with my heart. Some of you know most of this info already, but here's the abridged version:
1973 - born with dextro-transposition of the great arteries, along with a septal defect. Had a palliative surgery to keep me going until I was bigger.
1974 - more complex heart surgery called the Mustard repair (named for the doctor that invented it). Then symptom free and healthy until...
1994 - started having rhythm problems; got my first pacemaker when I happened to be just 3 months shy of getting health insurance. Turned my parents' dining room into a fund raising office and got it mostly paid for with the help of friends, family, churches, etc.
2000 - went into atrial fibrillation during excercise, and ignored the sensation for 5 days thinking it "must be the flu". (I know, I know...) Finally got a cardioversion, but short-term "flutters" continued.
2001 - Got a fancy schmancy new pacemaker - on my 2nd wedding anniversary no less - as part of a clinical trial, due to continued atrial fibrillation and other problems.
2005 - July... went to the ER for heart attack - like symptoms. No heart attack, but was monitored for 4 hours. Heart and respiration went back to (mostly) normal on their own by the next day. No one knows exactly what happened.
2006 - Aug... needed a new pacemaker; the other was too run down. No issues with that surgery.
2006 - Sept... pacemaker "pocket" got infected. Was put on mega antibiotics and checked regularly. Infection wouldn't go away.
2006 - Oct... was hospitalized due to severity of the infection. After 10 days, docs decided to take out the pacemaker. The "pocket" was too infected for them to put in a new pacemaker. Was sent home with an antibiotic pic line for 3 weeks, along with more oral antibiotics, but no pacemaker.
2007 -Jan ... finally able to get a new pacemaker, which was done with no problems.
2008 - July ... yearly check up revealed more rhythm problems that the pacemaker and med aren't managing. Discussed possibility of either a stronger med or ablation.
2009 - Jan ... prescribed Sotalol. After researching this med, I decided to ask more questions before starting it. As of 1/19/09, still waiting for a call/email from my doc about this medication, because it can be risky. Also, during the appointment it seemed as though my 2 docs were in disagreement about whether to use the med or not, and I wanted to get both their perspectives.
1/23/09 - No call back from the docs, but I've spent more time reading about Sotalol and "talking" online with others on who are taking it, and I decided to start taking it. We'll see ...
1/29/09 - Got a call from my electrophysiologist. He said that he had seen all my emails and that the "team" had decided to go ahead and do an ablation. He spent 45 min. on the phone with me discussing my physiology, my prognosis, the ablation procedure, alternative treatments, etc. I feel much better about this decision and - even though any operation is risky and scary - it will offer the best chance right now for more normal heart rhythm. The hospital will be calling in the next few days to schedule the surgery...
2/2/09 - No call yet about when the surgery will be. Still taking the Sotalol but it makes me feel incredibly sleepy.
2/4/09 - Got a date for surgery - 3/24/09, then found out my parents will be away that week, so I'll have to reschedule (because they can't move their trip). Still feeling terrible on this med. I think that if there is a hell, the first thing they do when you arrive is give you a Sotalol. I sent emails to both my doctors asking if I can discontinue it, or have the surgery moved sooner. No response yet.
2/6/09 - Got a call from my electrophysiologist, who said I could stop taking the Sotalol and go back to my old med for now. The date for the operation has also been moved to 3/31/09, when my parents will be around.
2/9/08 - Feeling much better after not having taken the Sotalol for a few days.
3/21/09 - Just waiting for surgery and trying not to freak out too much. David & I will be heading out to Boston on the 29th.
To be updated as and when.