[thin4good]

BACK STORY: I need to get this off my chest, I know it's going to be a bit long, but you girls really help me through this challenging situations and this one's a doozy!

As some of you probably remember from a month or so ago. Right after my B-I-L was killed, my best friend's father was rushed to the emergency room with a ruptured abdominal aortic aneurysm. Through a miracle and 2 weeks in the ICU, his father survived. 70% of people who have an aneurysm of the aorta rupture on them die before they make it to the hospital. Well his father remembered after all of this hat his father (my best friend's grandfather) had also suffered a ruptured aortic aneurysm in his 50s.

When my best friend told me about this, I strongly encouraged him to take a pro-active stance towards his health. We discussed ways he could do this, and I suggested he see about getting a full body scan done, and having one completed every 5-10 years or so, to monitor for any abnormalities (like an aortic aneurysm). We talked about getting insurance to pay for a scan of his aorta, but realized that without any symptoms the odds of getting insurance to pay for a preventative scan were probably not good.

I researched a place that does full body scans and we set up an appointment for him to have it done. We assumed everything would come back clear, he's only 25 years old and in good health. Well after the scan he stopped by my office to show me the results they gave him on a CD. When he got to my office he told me the doctor seemed to think everything was great, but there was one thing that he should keep an eye on, that he had one artery that was probably larger than it should be. At first he couldn't remember the name of it, so he showed me the scans and pointed to the area he should keep an eye on. It was obvious from the scans that the artery was in the heart.

So I pulled up some other CT scans of hearts from google images and learned the part the doc was talking about was his ascending aorta. My buddy said, "yeah that's what it's called! The doc said it was probably a bit bigger than it should be." I asked if the doctor was concerned about this, and he said he didn't seem to be, but he was going to have the radiologist email a report the following week with his conclusions.

On the scans, we had, my buddy showed me what was too large, and told me that the doc said that it was measuring between 5.3 and 6.8 cm. When I asked him what size it was supposed to be, he said it's supposed to be more like that one... pointing to his descending aorta which was half the size.

So, again, I go to google, and I look aroun for pics of CT scans of hearts that look similar to my buddies. I see some normal hearts and their aortas do look much smaller than my friends. I then come across an image of one that looks very similar to my buddies. As I am reading up on it, I see that the image I'm looking at is actually of someone who had had an aneurysm rupture in their heart. In fact, every scan I see of an aorta as large as my friends has some sort of description of "aneurysm" underneath it.

I didn't want to freak my friend out about what I had seen and decided to wait until he got the report from the radiologist to discuss with him. There was no sense in freaking him out unnecessarily. And for all we knew, his dad maybe had a large aortafor 30 years before it ruptured, it's not like 25 year olds typically get CT scans of their heart!

A week later (last friday) the radiologist from this private scanning facility sends us his report.... what a waste of a week! All it says is that the ascending aorta measures 5.5 cm and could be valvular and they recommend having an echocardiogram done by their regular physician.

Well now, I go into full research mode on what the typical size of an ascending aorta should be and if this is something that is seen in young adults. What I find is very scary. Just about all info on the web states that if the aorta is over 5.0 cm surgery to replace the valve in the heart is recommended.

Even worse, is that everywhere I research keeps mentioning a syndrome called Marfan's Syndrome. Something I've never heard of before. At first I thought it couldn't be related to my friend, as they said that typically Marfan's patients have abnormal skeleton systems, are incredibly thin with really longer arms and legs. Well, none of that sounds like my buddy!

However, as I read more I realize that the number one indicator of Marfan's Syndrome is a dilated ascending aorta. Then I also come across an article talking about the relation between Marfan's and clubbed hands, and I remember that my buddy did have a clubbed foot as a kid. So I search Mafan's and clubbed foot, and yep that's an inidicator. I also remember that he was super skinny and had hyperthyoridism until they radiated his thyroid as a teenager (I didnt' know him then), and he is taller than his family members. So I realize he has 3 -4 of probably the top 5-6 symptoms of this syndrome. I also read that with Marfan's, they typically start to recommend surgery on the aorta once it's increased to 4.5 cm and my buddy has 5.5 cm! Yikes!

I debate on whether to talk to my buddy about this or wait for him to go get the echocardiogram and see what the doc says before mentioning this. However, I realize that most cardiologists don't specialize in young adults, and am worried that if I dont' say something he might see a specialist who has never heard of this syndrome. So I do some research and find a major hospital/university near us has a center that specializes in this syndrome. So I email the director of this center, and explain my buddies situation, and ask if I'm just scaring myself with needless Internet info or could he possibly have this syndrome, and should I make him aware of the possibility?

This director/doctor emails me back over the weekend and tells me that it sounds very much like this syndrome could be what he has. He also says that he does accept patients and would be happy to see him. He also tells me to please make my friend aware of this risk ASAP, and to also have my friend refrain from any strenuous activity, weight lifting, etc. until he is fully diagnosed!!!

[thin4good]

So I tell my buddy all of this late Sunday night. I send him the email and I encourage him to set up an appointment on Monday morning.

When he calls to set up the appointment, the co-ordinator says that the director himself rarely does echocardiograms but that the director has requested to do his and can he come in next Tuesday for the tests and a clinical visit. I think this is great news! I ask my buddy to please promise me to take it easy this week and he just laughs.

Later that day he calls me and he says so if I have this syndrome, then what? I said well from what I can tell there's no cure for it, it's genetic, but they treat the symptoms and most people lead very normal lives. But that they have to keep a close on certain aspects of his health, like his heart and his lungs. I also said it is something he could pass on to kids if he has them, and he'd probably want to talk to a genetic counselor. Well he's Ok with all of this, and then he asks me, so what about my aorta being 5.5 cm. and I explain the odds are probably pretty good that if the first scan is accurate that they may want to replace that part of his heart, and that as long as it's done under non emergency situations the outcomes are almost always positive.

This is where the trouble starts! He says to me, "yeah I don't think I'm going to have open heart surgery." I said well no one wants to have it, but if that's what the doctor recommends, we'll get through it. He says, even if it's recommended I highly doubt I would do it, I don't want to have a big old scar on my chest. I said you do realize if you don't have this done waht could happen right? He says yeah my aorta could burst like my dad's did, but I highly doubt that will happen to me at 25. So I'd probably want to wait 5-10 years and see how I'm doing. I feel fine. I remind him his father felt fine right up until he went into the hospital. he reminds me that his father had high blood pressure, something he doesn't.

This guy is like my kid brother. He lives at my house every weekend. He even has his own room. He lives like 35 miles from me, so normally he spends his weekend with me and my bf and then spends his week at his house 35 miles away. Everything in me wants to scream at him, but I also realize he's just hearing about all of this and I've been reading up on it for several weeks.

Well, fast forward to this morning. He calls me and tells me that he did some research on all of it, and he was surprised taht he didn't see any statistics for at what age the aneurysm usually ruptures, I said that's because it's about what size not what age. And that normally anything over 5.0 cm is considered scary. He says yeah he read that, but that he doubts any doctor will really know if it's going to rupture in the next 5 years. And he reminds me how he spends tons of time in his workshop lifting 150 parts for his jeep and how he even went on a 22 mile bike ride w/ me a few weeks ago (something I've been regretting since I learned all this info), and if that didn't make his valve rupture he's sure he'll be just fine!

Ugh! I realize he is still coming to grips w/ this. I realize the test is not until next week. But this guy can be soo stubborn, and I know he wants to think he's immortal. But he is someone who is like me. He is always pushing himself. We go out into the middle of the nowhere to offroad, and often times are hours from civilization, we have had to push major rocks, repair jeeps on the side of mountains, and have often times gone long periods of time on little sleep and lots of adrenaline. NONE of which is good for someone with a compromised heart valve.

I also know that even if the doctor does want to take a "wait and see" attitude that my friend will NOT slow down his lifestyle. I am trying to be patient with him without trying to hammer him over the head with the details. But at this point he hasn't told his family about what's going on (he doesn't want to stress them with his dad still recovering) and he decided he doesn't want me to go to the appointment w/ him. I'm worried he's going to go to this appointment and regardless of what the doctor tells him, he's going to tell me the doc said lets wait and see.

I am going to wait until after the doctor's appointment and see what he says after meeting with them. I am hoping that as he has a week to think about it, he will realize it is better to have this taken care of than wonder if the next thing he attempts to do will be his last. If he comes back from the appointment with the same "it's no big deal" type of attitude, and can't produce any proof as to the doctor thinking it's no big deal, I'm torn on what I should do.

I've always said I can't care about someone more than they care about themselves. If he refuses to address the gravity of this situation I'm not sure I can maintain a friendship w/ him. I know he would be very upset w/ me, but I think I would be forced to tell his family what is going on, as well as his friends. Even if he hates me for it, I'd rather have him be healthy and mad at me, than in danger of losing his life. I also worry about the safety of our friends. As I mentioned, we offroad together, and there are many times when we are putting our lives in each other's hands. We spend a lot of time at high elevations which raises heart rates, we also have often found ourselves having to move large rocks by hand or attach ropes to people's vehicles and pull to keep them from sliding off the side of something. This friend is always in the mix during recovery like this and is also usually the most hard core wheeler of the bunch.

Him going out to the middle of nowhere and not telling our friends what he has going on, not only puts his life at risk, but also puts the lives of our friends at risk. And at the very least, is very selfish of him, because if something were to happen to him, that's not something a friend should have to watch a friend go through.

Anyway, I know I'm thinking out loud but this has been weighing heavy on me for weeks, and I can feel myself stressing about it, and stress usually leads me towards bad habits, and I needed to vent to people who can listen but also don't know him.

Thanks for listening!

[whathappened2me]

This is a tough one. But, before I start very nice picture. Those Irish eyes are smilin.

Part of me is like you can lead a horse to pasture, but you cannot make him drink. What else can you do. I am not trivializing your friendship, but you did research and foot work that maybe he should have been doing. You called the doctor and pushed (and pushing) him to save his own life. I think a lot of people do understand the power of genetics. I also think that he seen how old his dad was when it happened to him. And as a result he thinks he has time. But, so many factors weigh in on when and how it may occur; like lifestyle, environment, etc. The scar would probably be the least of my worries. I think he is scared.

The other part of me is like, it is hard to face your own mortality. And I would probably make my way to the appointment with him. I think the first doctor may have supported or laid the ground work for his complacency. If I just saw something that traumatic happening and was afraid, I would probably go with the least invasive and softer advice. Since the first doctor took a more laissez-faire approach in how he conveyed the potential severity, which hurt more than help. Again, I think he is scared and needs support.

I know that I did not have a definitive answer. It's hard when it is this personal. Has your BF tried to talk to him? I know your buddy is obviously cool with the opposite sex, but maybe he will respond to someone more of his likeness. Not necessarily the doctor or you, but someone who is male and in his age group, and leads a basically similar life. A person that almost mirrors him. Sometimes people relate better that way.

By the way you are an awesome friend.

[MaggieinATL]

Dr. Vincent Gott at Johns Hopkins is the leading expert on Marfan's Syndrome. You probably should reach out to him. He's retired but, he will probably answer your email. Marfan's Syndrom affects more than just the heart. There is usually a tumor in the pituary gland associated with it and generally speaking, people with Marfan's have growth spurts that are abnormal. Don't ask me how I know so much about this...that's a whole other story.

On a side note, he's an adult. It's his life. If he chooses to address this or not is his issue. You're taking this personally when you have zero control over the issue. Some people know they have problems and choose to ignore them until they get the "right" wake up call. It's great you care but, part of caring means you love your friend even when they make bad choices.

Sorry for the calious reply. Must be the nurse in me.

[LoSingWeightin08]

I know you feel concerned for him but I understand where he is coming from. A lot of my friends feel like we'll be young 4ever but it just doesnt work that way. I remember the summer b4 my junior year a very active guy from our school's basketball team died from @ heart attack at just 17 years old. I'll pray for your friend's situation & hope that he decides to make the right choice; ur health is something you cant play the guessing game with.

[thin4good]

Thank you all for the responses!

Whathappened - I've considered trying to get BF to talk to him. They are friends so it might work, though I will say that BF is the pacifist in our relationship (and I love him for that) . He often jokes that my best friend and I are like the irresistable force meeting the immovable object.

Also, it's not that my best friend isn't proactive, but between BF, best friend and I, we all are very good at trusting each other to handle the tasks that we are each best at. I'm the researcher, best friend is the fixer and boyfriend has the ability to troubleshoot the really challenging issues.

Maggie - thanks for the insight. I know that marfan's is much more than just heart related issues. I will look up the individual you mentioned. As for being callous, I don't think you are being callous at all! I worry that I am the callous one. For the people, I care about I will move mountains if I need to, but I have also learned to walk away from those that aren't willing to try to help themselves. I hear people say all the time, "but they are your friend or they are your family, you have to be there for them. " I will be there for them, but I won't sit by and watch someone destroy their life whether it be through ignoring their health, being addicted to something or staying in a relationship they know is wrong for them. I eventually move on, and let them know when they are ready to make a change I will be there for them, but I can't suffer with them.

Thanks losing for your thoughts too! You guys are awesome.

[want2lovemybody]

The first thing that popped into my head were the athletes who, at his age, dropped dead from complications related to Marfans. So, I started Googling to see if I could find a list of "famous people" with Marfans, and I learned something new today. Did you know that Michael Phelps has marfans? It's part of what makes his wingspan wider that he is tall, and what gives him those long fingers and feet. So when the media is all hyped up on how he has the perfect swimmers body, well, he has a Marfans body...and thats not good. According to what I found, he goes in for tests on his heart like twice a year. They are constantly watching for enlargement in his heart in an effort to keep him from basically "dying" in the pool. I know there have been several basketball players to die from heart problems related to Marfans. I was just thinking if you could show him some real life cases of people his own age that he might be a little more convinced. The truth is, he is scared of the pain associated with open heart surgery. He has to be convinced that the pain of surgery is better than the alternative.....death. Best of luck to you. It won't be easy.

Tina

[thin4good]

Wow want2, you know I was looking at Michael Phelps the other day thinking his body resembled someone w/ marfan's and then I thought I has clearly spent too long researching it! LOL, thanks for doing that.

You're right, he is scared, I think the reality of it hit him last night as I got a call at 12:45 and he was worried something was wrong, but honestly, he was having anxiety... I know how scary it is. I'm just trying to be there as much as we can.

[Lady Shazerz]

it's unfortunate but HE has to accept it and make a choice just like WE had to accept our weight and make a choice. How long did it take you to finally decide "I HAVE TO LOSE WEIGHT!"? It took me a LOOOOOOOOONG time, luckily my life wasn't on the line but in your friends mind, neither is his...he has time..."I'm only 25." Well, he just doesn't understand that 25 isn't a magical number. I understand your plight even though mine is not nearly as serious or urgent....My best friend smokes and he says he is trying to quit but it just doesn't seem to be working. Well, we made a deal for our health, I would quit eating and he would quit smoking. Well, he's losing the deal and he knows I'm upset with him but the fact of the matter is, it's SO not my choice EVEN THOUGH I DON'T WANT TO LOSE HIM!! All I can do is remind him that I love him and don't want to live without him in my life. But still, HE has to make that choice for HIS health just like I did to lose weight for my health.

Good luck, I hope he makes the right choices.

[countryasadirtroad]

D*mn girl... I don't know about this one. I'm in a similar situation with my hubby, so if you figure out what will get through to your friend, let me know and I'll try it on the hubby. You're a d*mn good researcher... I rarely see you reply to a thread that you didn't research first. When can we expect an update on this story??

[thin4good]

The update: I talked to him a few times yesterday and he kept being as nonchalant as he was the day before. Except his dad let him know that not only did he and his grandfather have aneurysms but his older brother (my best friend's uncle) died of a brain aneurysm at a young age too. Apparently info his dad had never pieced before until yesterday... Yikes!

While I was talking to him one of the times he was climbing down the access ladder that leads to the roof of his warehouse which is oh... 6 ot 7 stories tall. He was breathing crazy hard. As he caught his breath I asked him if he hated his life that much? He said no, bu