We started the transplant evaluation process in November 2012 after both Nicole's PH specialist and her cardiologist agreed that it was time for this. She saw the heart/lung surgeon and than she saw the lung director at the transplant center. The doctor ordered several tests which included an echocardiogram, a CCTA scan in which they inject dye into the patient and watch how it flows through the heart, a TEE which is where a tube was stuck down her throat with a camera which shows images being seen on the sonogram machine, and lastly a right heart catheterization. After the doctor had gotten the results of all these tests the doctors at the transplant center, another heart surgeon that specializes in congenital heart defects, her cardiologist, and her PH specialist were all going to sit down to discuss a plan of action, namely can they repair Nicole's heart or does she need a new one in addition to two lungs. I know there was a meeting schedule for the second week in January but one of the doctor's at the transplant center had a heart transplant and couldn't attend. The PH specialist told me that only himself and the lung director showed up for that meeting. To my knowledge another meeting has not be scheduled. During the week of January 21st when Nicole was in the hospital the transplant center center had called because they had received an email about the PH support group meeting which also stated that Nicole was in the hospital. The doctor wanted his coordinator to call and find out how Nicole was doing. She also wanted to schedule an appointment to come in and continue with the transplant process and told me to call either the following week or week after. It has been two full weeks since Nicole was released and I have been procrastinating about calling. They did call on Friday but my cell phone was in Nicole's room as I have her medicine alarms on it. I had a call so Nicole had to take her medicine without me waking her up. I didn't return the call on Friday like I should have either. I MUST DO this on Monday regardless of my fears.
My friend, Denise, founder of caregiving.com, had asked me to blog about this and write out my feelings. I am hoping that this will let me come to terms with my feelings. I am procrastinating because I am afraid. I am afraid because I don't want to hear the results of the testing and what they will determine, I am afraid she will die during the transplant itself or after the transplant because of complications (infection, rejection). The 5 year survival rate for lung transplants is not as good as I would like and while I don't have the exact number in front of me I believe it is right around 50%. I am afraid I will not be strong enough to endure this as it will mean a long hospital stay and require Nicole being hooked up to many machines and breathing devices. I can't in good conscience leave Nicole by herself in the hospital. I am afraid that they will deny her (either the transplant center or Medicaid) or we will not be able to raise the money needed. The estimated cost of a double lung transplant in 2011 was $797,300 and the cost of a heart/lung is $1,248,400.
I'm afraid that Nicole's perception of being "normal" after a transplant is unrealistic. I don't have the specific information in front of me but I know that while she will be "cured" of PH and she will no longer have heart issues she will not be able to go out into any public place like malls, Disney etc. for the first six months after transplant. She will have to wear a mask to protect from germs in public for the rest of her life. She will have to visit the center on a weekly basis for either the first six months or year. She will also get regular testing. She will still take a lot of medication (maybe not as much as she does now). She will have to keep a daily log of symptoms and all her vitals including blood pressure, oxygen saturation levels, temperature twice a day for the rest of her life. She will be normal in the respect that she will be able to breath normal but I don't think she really grasp what after transplant life will be like... the question is will it better than it is now or not??????