Wait time is unknown. It could be days, weeks, months. It has to be in a 1600 mile radius and 4 hour travel time window from CHOA. Once they get the call and Dr. Kanter evaluates and sees if he thinks it's a good match then he will have the surgical team (which he is a part of) fly out to wherever the heart is and remove it (fully disconnect it from the body) and bring it here, where Andrew will be prepped and waiting in the OR for transplant. He will go on tons of medications and anti-rejection meds immediately and will always have a very low and supressed immune system, so that his body will not try to reject the foreign organ.
There are risks such as rejection, sudden death, death on the surgery table from the heart rejecting immediately (less than 2% chance that will happen), and risks and side effects from the medications he will be put on which can also damage the liver and kidneys. Another risk is developing a type of cancer from the lymphnodes sending huge amounts of antibodies out in the body that doesn't need those and obviously infections that could potentially be fatal because he will have such a low immune system.
There are POSITIVES!! Unlike HLHS, Andrew will be able to experience for the first time in his life a fully healthy beating heart. He will feel good,he will have good oxygen levels at a normal 100%. He will also after his first year to five years have absolutely ZERO medical restrictions, so he can run, play, play sports, gym class etc. like any other normal child.
He absolutely CANNOT miss a dose of his medications and he will be on those for the rest of his life. If he misses a dose of his anti-rejection medicines then his body could start attacking the new heart immediately. He could be on anywhere from 8-15 medications post transplant and up to the first year. Eventually he will get down to maybe 4 or less, but for life.
This WILL NOT be Andrew's only heart transplant, hence the serious need for donations as quickly as possible before his first transplant and that this is a for life medical condition. He will outlive the life of his heart by age 15-18 and require a new heart as long as the new heart stays on track and at their average expectancy. He will be in the hospital way more than he is now and constantly having blood draws, biopsies, heart cath etc. to make sure his medicine levels are therapeutic and not damaging any of his other organs, but also high enough to do their job of suppressing his immune system.
Donations- The transplant social worker informed us that this is a very expensive surgery(ies), and medications are ridiculously expensive, and life long. Issues with insurance changes and drops are high concern for the transplant team and being able to continue clinic visits, treatment and potential transplants in the future etc. For Andrew all of his visits will be held in Atlanta. We do not have the option of a Dalton clinic anymore, so traveling expenses are going to get outrageous. The bigger worry is when they turn 18 and are no longer on insurance like they were growing up. We are going to actively list him on a foundations site called COTA where the transplant social worker said to raise absolutely as much money as possible before his transplant, and those organizations to help cover all these daunting costs and they will match what we raise. As transplants etc. are very expensive and lifelong then no set amount is there. He said the more the better, but after transplant they will no longer match that amount. He offered suggestions such as fundraisers, reaching out to the newspapers and news, and starting something like we have with the youcaring fundraiser site. Since we don't have a time frame before transplant is received, we are trying to move as quickly as possible to make sure Andrew will be covered financially, we will be here in Atlanta for some time.
There are several restrictions for Andrew, especially in the first year such as no pets, no dogs, no cats, no birds. Bird cages, litter boxes, dog wastes, etc. is something he cannot be around at all, nor sick animals. If anyone pets one of these animals they have to wash their hands before they touch him. He can't be out in public or crowded places. He will never be able to rake leaves, dig around in the garden, or cut grass etc. or have a bonfire, or any type of construction or remodeling cannot be done around him (also lifelong risks). All of these things can potentially house fungal infectious diseases and mold and bacterias and get into his lungs and kill him from his body's immune system being so low.
Everyone will have to: (lifelong risks)
*wash hands before touching him
*after gardening or touching plants and animals wash hands
*during flu season he cannot go out much at all
*avoid all cigarette smoke because the toxins in those can get in his lungs and make him very sick
*If any of us get sick we have to wear a mask and properly disinfect everything that could be or become contaminated
* His water has to be boiled or bottle water used
*no hot tubs
*no well water
*cuts or scrapes have to be cleaned and disinfected, especially fresh and salt water wounds immediately
*no raw, or unpasteurized foods and meats
no cold cuts, meat spreads, or smoked seafoods
We also have to avoid significant mosquito bites etc.
*His bottle and food cannot be prepared in a place where I am preparing a dinner where raw meats and uncleaned veggies etc. have been.
His labs and tests are being done now and we should have results back tomorrow for the transplant team evaluation and then they will regroup, discuss if this is best, get our consent and have him actively listed. After he is listed he will continue to receive care here until the match is found and transplant completed. Getting him to the transplant is main concern as his heart could get worse and require added medications to function and if that doesn't work he will be placed on ECMO. ECMO is life support that will pump his heart for him. After long periods of time on ECMO, or even shorter durations there is chances of severe bleeding, stroke, and loss of limbs on this machine and death. There is an 18% chance that he wont make it to transplant, but we know God already has everything in order for our son's new heart. We are believing!
This wait and new heart journey is going to be very stressful to say the least, but we are so overwhelmed by so many prayers and the words of encouragement we are receiving from everyone. After the transplant we will be kept around a while here in the transplant wing at the Ronald McDonald house to follow very closely with medication levels and to be sure the new heart isn't going to be rejected since we live so far away. Our families are working out bringing our daughters up on weekends to visit and trying to maintain as "normal" as possible of a life for them at home until we all return under one roof together.Thank you for all the prayers and support.<3