On March 21, 2012 I had my surgical consult for my upcoming open heart surgery. This will be my third OHS in my lifetime and the first one I have had to go through as an adult. I have been very nervous at the thought of undergoing such a procedure. I do not remember anything about my previous procedures because I was an infant and toddler during those surgeries. I have to say the mental anguish is possibly far worse than the physical pains of surgery. The anticipation is far worse than any other experience I have ever been exposed to.
My mother, step-father, Gabe and I met with my surgeon, Dr. Nigro,to discuss anything and everything about possible surgery. Dr. Nigro reviewed my anatomy and current heart health status with everyone and from there gave us 3 options. One, I can opt not to have surgery and regulate myself with medications which have already proved to be inadequate at controlling my rhythm issues. Two, I can opt to wait until my condition worsens to the point at which I can no longer wait and will die without immediate intervention. Lastly, I can have surgery now. Option one is out because medication has proven ineffective with me and has a good chance of destroying my liver and/or thyroid in the process. Option two is out because the longer I wait the worse my physical condition will become and the higher risk I will be as a surgical candidate. That only leaves option 3, operate now.
After reviewing all of this information Dr. Nigro invited us to ask any and all questions we may have. Here is the official list of Q&A between Dr. Nigro and I.
Q: What pre-op testing will be required of me before surgery? Is a heart cath going to be necessary?
A: Since having a cath only a year and a few months ago a cath is not required. I will be required to be subject to standard pre-op testing to include blood work. The team will conference one more time before surgery to ensure the game plan and if there is a piece of information they are missing they will contact me and let me know what they need me to do.
Q: What is the mortality rate for me specifically?
A: Mortality rate for this surgery is determined individually by how good your circulatory plumbing and ventricular function are at the time of surgery. My plumbing is excellent and so is my ventricular function as it is my atrium that is seriously in need of repair. My risk for death is 2-5% which may sound scary but at the time I had my first Fontan in 1986 the mortality rate for that procedure was 10-20%. The surgery is not risk free but is rather low risk. Complications can occur but things like thromboembolis and stroke during surgery are the exception rather than the rule. The most common complications and things that will be monitored closely are infection to the surgical site as well as fluid build up.
Q: How long does the actual surgical procedure take on average?
A: On average the surgery takes 4-6 hours with no complications. It can take longer but the aim is 4-6 hours.
Q: Will I have a permanent pacemaker put in place?
A: Dr. Nigro said they would be leaving pacing leads inside in case the need arose for me to have a permanent pacer. He explained that the pacer is computerized and smart enough to know when it does and does not need to be on. I told him that in that case I want the pacer put in during surgery. If I don’t need it great, it will just stay turned off but that I would rather have it there and not need it than to have to get cut open again to put it in place if I do need it. He agreed and will be putting a permanent pacer in.
Q: Will I have blood transfusions in recovery?
A: I will need several transfusions during surgery and probably one or two in ICU. There is risk of transfusion reaction but again, that is rare in this day in age.
Q: How long will I need to be on a respirator?
A: After surgery the ultimate goal would be to be off the respirator within the first few hours. Typically patients are off of the respirator within a few hours to 2 days of exiting the procedure.
Q: Will I have a feeding tube or colostomy bag?
A: No need for either of those but I will have to have a urinary catheter.
Q: Is there a possibility that my breasts won’t be the same as they are now? (I don’t want my girls lopsided or be a candidate for the nickname Biggie Smalls)
A: Dr. Nigro seemed shocked and laughed and said that my breasts will be just the same as before.
Q: Will the incision be sutured on the outside? Glued? How will that work?
A: Disolvable sutures will placed internally and there will be nothing on the outside holding the skin together.
Q: How long will I be in ICU/regular room (i.e. what is the average length of stay)?
A: Definitely two weeks minimum but four weeks is not unreasonable for an expectation either. My length of stay will depend on my progress. Dr. Nigro is concerned that I live in 2200 and 7700 feet elevation and has advised that I stay in Phoenix for at least 2 weeks after my release from the hospital. I have no idea what I will do for this as I am not sure if I can afford an extended stay hotel or to rent a house for a month. This is still up for debate and will be discussed with my cardiologist, Dr. Rhee, as well.
Q: What medications are patients that have this procedure typically expected to be on after release from the hospital?
A: Three medications will be prescribed with almost certainty and others may be added on depending on what my body does. Upon release I will be on Lasix, Enalipril, and Coumadin. Lasix is a water pill to make sure I keep fluid off of my heart and lungs. Enalipril is a blood pressure medication to make sure that my heart does not work to hard. Coumadin is a blood thinner that will be given for a short time to ensure I do not develop any clots.
Q: Will I have to have a home health care nurse after going home and for how long?
A: It is not unreasonable to have home health care for a short time after surgery. A nurse will come by to check my surgical site and take my vitals. This is to ensure there is no infection and that I do not develop any complications that I may be unaware of.
Q: When will I be able to resume normal activity and have sex again?
A: I will be able to resume activity in 2-6 weeks as well as resume my sex life (LOL). Dr. Nigro said he understood I was asking this because I didn’t want to have sex thinking I would break, which were my thoughts exactly. LOL!
Q: Will the surgery be held at St. Joseph’s or Phoenix Children’s Hospital?
A: Most adult patients have their procedures at St. Joseph’s. I told Dr. Nigro that I did not have a real preference but that I have been in Children’s hospitals my entire life. In certain cases Dr. Nigro will advocate for an adult to have their procedure at PCH versus St. Joseph’s and he believes my case is one of those cases. I am fairly certain I will be at PCH for this surgery which I am actually more comfortable with. The rooms look awesome and I hope to be able to visit the infant/children’s heart units and talk to CHD parents and kids while I am re-cooping.
That concludes the Q&A. The surgical coordinator called me yesterday and advised me that she is waiting on all of my records and dictation from Dr. Nigro to schedule the surgery. She asked when I was shooting for and I told her June. She said that would not be a problem as they do not currently have any surgeries scheduled yet for June so I get to choose to have it whenever I want. I also gave her the heads up that I wanted to have the surgery at PCH and that Dr. Nigro was in agreement. She again said no problem and that they would call me back to schedule as soon as all the records were in.
I am still nervous but feel better about the procedure over-all having met my surgeon. Dr. Nigro was straight forward and was able to answer all my questions without pause. He definitely knows his shit!
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