Sorry I haven't updated. Surgery went well on the 8th. I had heart rate issues on day 3&4. Heart rate was increase from lower hemoglobin,but I was also have 10 beat run of 180. Fortunately, not enough to set of my AICD. They adjusted my AICD limits. They also started me on the age ol' drug Digoxin. It worked like a charm so I was able to be discharged last Wednesday.
Friday, my sternal/chest/inscision pain was through the roof. I was on Percocet in the hospital and they sent me home on vicodin. It was a bit of a fiasco as the surgeons office had an across the board not to prescribe anything stronger and if I needed something else I had to go to pain management or my primary. Fortunately my PCP has know me for 18 years, I'm a nurse and was able to describe the pain sufficiently for her to know it wasn't some other complication.
Each day gets better. My best friend from nursing school helped my husband while I was in the hospital and at home. My son and his family arrived yesterday to help, giving Mike some well deserved time off.
Appointment with cardiologist tomorrow.
I was overly hopeful yesterday. Looking at Thursday for discharge. My heart is being a little excited and having some tachy episodes. Potassium and Magesium on the low side so I will be getting some of those. So, I'm going to hang out here and so they can make sure I will behave.
I had my Pulmonary Valve surgery Friday. Surgery went very well.. I hated waking up while still being intubated! Such a releif to get that out. Chest tubes and catheter came out yesterday (Sunday). Having the chest tubes out made such a difference in discomfort level. Able to get better sleep and deep breathe. Transfered from SICU to Telemetry on Sunday afternoon.
Today (Monday) my heart rate is a little high, otherwise they are quite pleased with my progress.. If my heart rate goes down, I may get to go home tomorrow!
When I was growing up, the only time I ever saw another kid with CHD was at my cardiology appointments. I certainly did not have anyone in my everyday life. I had my surgery when I was 16 and I was very alone in that aspect. My parents also did not have other parents to talk to. I don't think they ever sought others out either.
As a face surgery in less than 24 hours I am humbled by the love and support from the friends I have met in the online CHD community. Facebook, blogs, online support groups have all become a great source of information.
Also because of facebook, I reconnected with a sorority sister from college. I hadn't seen her in 35 years. Out of all my friends and relatives, she was one of three who has my she blood type. She took time to go donate blood for my surgery.
Yesterday I got the last of my pre-op tests done. Today I will go see my dad, pack my bag, bake cookies for the nurses, and clean my house. I will also try not to think about tomorrow when I go to the hospital for surgery. I will let everyone else worry about it.
This time next week I will be about 12 hours post op. I know the week will fly by much faster than I will be ready for.
Right now I am settled in my room, just down the hall from my three sleeping grandchildren. Two more days with them and then I fly home to finish the last few pre op tests.
Until today, it was just a date off in the future. Surgery will be in early June. Now it's June. Now it's less than a week away.
First I would like to thank everyone for sharing their stories and journals. It makes this journey easier.
This is a new journey for me. I have been a heart patient all my life. That's how it is when you are born with a heart defect. I had surgery as a infant and as a teenager. Like many others, I thought I was "fixed". About 6 years ago I discovered ACHA, the Adult Congenital Heart Association. Life long care is needed to live a long life.
I had been seeing a "regular" cardiologist who seemed to think I was doing just fine. A near fatal run of v-tach, an AICD placement, increased fatigue and shortness of breath with activity, I was doing fine. Compared to his Heart Attach patients, I was fine.
Fast forward to this year. I finally saw an Adult Congenital Cardiologist. The pulmonary valve that was rebuilt 40 years ago was no longer functioning. That certainly explains everything. An echo and heart cath confirmed this. My doctor and I were hoping a Melody valve would be an option, but it is not.
June 8th I am scheduled to have tissue pulmonary valve placed via open heart surgery. I never thought I would be going through this again. But here we go! The ride will be all worth it, so I may, literally, RUN with my grandchildren!