Lyn and Nancy, Thanks so much for your great info!!
Lyn, You have certainly gone through alot with your son. It is so hard to be the "mom", isn't it? You are so right about giving Colin some decision making in this whole thing. Up till now, I have managed the whole shebang. I think it is only now that the realization of having Marfan has hit Colin. Luckily, he has been spared what alot of others have had to deal with as far as Marfan goes. He has scoliosis, but just a bit under what would be required to need surgery. And, up till now, that was always true of his aorta. It is comforting to know that you go to CHOP too. We see Dr. Reed Pyeritz, who is head of the Clinical Genetics department. He said he will review the MRA with Dr. Bavaria to come to a decision. Up to now, Colin has only had echos done to measure the root size. Dr.P said he would set up a consult for us with Dr. Bavaria. Unfortunately, he sees patients on Tuesdays and Dr. P sees Colin on a Thursday. I am not sure what we will do. Maybe we will schedule it and drive down again. I definitely would like to confer with Dr. Cameron because of his expertise with Marfan. As I said, I know I should let Colin do more, but I have been the one to seek out all the knowledge over the years. I am even wondering how much to tell him about what to expect. He had a small panic attack last week, but last night said he feels good about it all and wants to have the surgery soon. I don't think he ever worried about a dissection before now. I almost want to shield him from the info about the surgery and what to expect after. I am sure you went though this. I almost want to take on all of his worries and have him not think about the down side of it all. I sent an email to Dr. Svensson and will probably do some phone calls this week. I hope your son is doing well at this point in time!
Nancy, My condolences to you on the death of your husband. I admire the fact that you take the time to help out others after having gone though such a loss. I actually started a support group in the Capital District for Marfan. Now I am a telephone support person for the area. I do not know Dr. DePan. I imagine he is in the group with Dr. Britton who I had come to speak to our group. My friend's son had the aortic root replaced by him a year ago and is doing well. He had a mechanical valve put in and my hopes are that my son can have a repair done. His aortic valve does not leak and the mitral valve leaks just a tiny bit. I do have alot of faith in Albany Med and know that would be our ER of choice if necessary. The only reason I want to look out of area is that I would like a surgeon who does more surgeries in Marfan patients, who have weakness in the tissues. It makes the suturing even tougher. I will look up both of your links and so appreciate your help.
Thanks again, Barb
Just a couple things to consider, that i am throwing out there, Since he goes to CHOP have you considerred Doctor Spray? One of the reasons I ask, is Justin's last surgery he was 19, Spray operates at both CHOP/UofP and gave justin the choice where he wanted to have his surgery. We all including Spray thought the whole experience would be much better for Justin at CHOP. It is just much more cheery, and all the rooms have video games ect, and over all geared toward teen/young adults, plus Justin thought he would be much more comfortable with the other patients being children/young adults instead of much older patients.
This is just MY OPINION, and of course You know your son better than anyone, but since he is 24, I would be as honest as possible and as much as you want to protect them and have them not worry, I think it was better for Justin at least that we taked about everything before he went to the surgeon and definately before the pre op tests. Since he is an adult , unless there are special circumstances and you are hsi guardian, he will be the one that has to sign all the consent forms, they will as about living wills ask if he is an organ donor ect and go into great detail about what the surgery and recovery will involve. I wanted Justin to know about this as much as i knew, so he wasnt blindsided when he went for all the discussion with the surgeons and more importanlt all the pre op discussions, form signing.
A little background, when Justin was 10, that was the surgery he had the day after his "routine" cath. We talked all about the cath, what he would feel when he woke up ect, well he was groggy from the cath when we told him he was having surgery the next morning, so from his perspective he believed he was going for a cath and should wake up with a sotre leg, but instead woke up on a vent, with tubes everywhere and his sternum cut.
he was SOO angry a couple days because he thought we knew he was having surgery but didn't tell him. He had to hear froseveral nurses and doctors that we really did not know he was having surgery and that he was told after the cath. I felt bad, because I worked hard to be honest, not scare him but be honest about what was going one, what things hurt or didn't, ect and for a while he lost the trust. I know for justin and me, If i kept anything about his surgery from him and he found out the day before surgery, since they HAVE to tell the patient everything that could possible go wrong ect, he would be very upset, he didn't know more before and he would lose some of the trust he has in me for the future.
beside the trust issues, I really believe the more you know and can prepare for, the better. Even if it is just the basics, like there is a good chance you will wake up on a vent, and not to fight it and tell him, this is a good thing to discuss with the surgeon and anesthesia that you really want to be off the vent ASAP, Tell him of course there will be some pain but they work very hard to keep the pain as low as posssible and don't be brave and try to not use your pain meds in the beginning, it is easier to keep pain under controll if you take the pills before the pain is bad. Also let him know he will have to work hard, he probably will be sitting up eating and starting short walks the day after surgery..that kind of thing.
PS as for the surgeons seeing patients on different days, I persoonally would call and explain your situation, about how far you lives ect and you will be there a certain day. OFTEN if possible the surgeons will find a way to meet with you. Even if it is between surgeries ect. We've met with Spray on a day he was in the OR, of course the timing won't be perfect, since you will have to wait for the surgery to be done and sometimes they take longer ect, But we would go eat and they would call us when we could go to his office.
Here is sprays bios, the reason i thought of him, was he is one of the leaders in Ross procedures for children and does alot of aorta work
http://www.chop.edu/doctors/spray-thomas-l.html?view=2 I know he operates at both CHOP and HUP, but don't know if Bavaria his on staff at CHOP
