Log in

No account? Create an account
Long Tall Folks' Journal [entries|friends|calendar]
Long Tall Folks

[ userinfo | livejournal userinfo ]
[ calendar | livejournal calendar ]

Losartan: morning or evening? [23 Jun 2011|09:14pm]

Hello, Marfs.

I've just been put on Losartan by my cardiologist. The packet is sitting here with me, but I'm unsure when to take my first one. Morning or evening?

My blood pressure is low to low-end-of-normal. I've been on Losartan before, but only for a brief period as it made me feel unwell. I need to stick with them now, though, so I wondered if anyone here had advice to offer.
2 comments|post comment

Well, bugger. Chocolate and Marfans. [23 Mar 2009|07:18pm]

[ mood | grumpy ]

Oh, science. Why must you ruin everything?

Apparently, the procyanidine in dark chocolate is really good for you - unless you're a Marf.

It opens up the blood vessels almost instantly, dilating arteries, protecting against heart disease. Suffice to say, if you're a Marf, dilating, bendy blood vessels are pretty much the last thing you want. The studies I've read don't really elaborate, but the basic thrust is this: if you don't have Marfans, enjoy dark chocolate! Bastards.

However, procyanidine only appears in the darkest of dark chocolate - which is the only type I really like, incidentally - as well as apples and red wine.

Sigh. Shall I cancel my trip to Hotel Chocolat?

7 comments|post comment

[19 Mar 2009|03:30pm]

So, I never really cared what celebrity had Marfan Syndrome. The guy who wrote Rent had it, and some volleyball player, and that pot head swimmer.

But Joey Ramone also had it. Joey Freaking Ramone.

Then I started thinking: What if all Ramones songs were about having Marfan Syndrome?

The KKK Took My Aortic Root and Valve Away.

Sheena is an Orthopedic Surgeon.

I Wanna Be Sedated.

Merry Christmas (I Don't Want to Fight Tonight About Taking More Than My Recommended Dose of Pain Pills.)

Now you!
3 comments|post comment

Marfans + winter = ? [14 Dec 2008|06:24pm]

[ mood | tired ]

I bloody hate winter.

Not purely because I cannot stand the cold, but because winter seriously messes with my joints. My left knee has been wobbly and painful for two weeks and is only getting worse. I feel all the extra connective tissue moving about when I'm walking.

How does winter affect you, as a Marf? I'm curious.

4 comments|post comment

Ludicrous Marfans hips [18 Nov 2008|10:57pm]

[ mood | curious ]

Something's been bugging me for a while and I wanted to ask fellow Marfs:

Does anyone else have oddly wide, sticky-outie hipbones?

The rest of my skeleton is out of a medical textbook. I have the Marfans height (6'1"), the disproportionately long limbs and the wonky chest, but I haven't read anything (beyond descriptions of Pharoah Ahkenaten) that attribute weirdly wide, squared-off hip bones to Marfans. I haven't known enough people with Marfan Syndrome to notice it as a skeletal symptom, but I have my suspicions.

Any thoughts?

11 comments|post comment

[08 Nov 2008|09:05am]

Hey there... I'm new to this community. I was recently diagnosed with Marfans after getting an echo... I'm now 14 wks and 4 days prgnant with my first child and my cardiologist has made it abundantly clear that he thinks I shouldn't be having kids. I'm absolutely loving the frequent visits to my OB, my cardiologist, and maternal fetal medicine.... but I can't wait to have this baby even if it kills me. They're recommending I get on beta blockers once I hit 20 weeks and I'm a little freaked out about taking them. I need to research them a little more to see what the effects on my fetus will be.
12 comments|post comment

Dural Ecstasia [11 Sep 2008|10:48pm]
Hey Y'all,

I've posted here once or twice, but I come today to ask for some information/experience sharing. I'm pretty sure that I'm experiencing the effects of some good ol' Dural Ecstasia (expressing itself as some numbness or pain in my left hip). It's also likely that I could have a pinched nerve...or MS...Christ knows, I tend to be a bit of an alarmist. But my rational side tells me it's more likely than not a pinched nervey nerve or dural ecstasia. I haven't actually gone to the appropriate doctor yet, as he's berludy hard to book an appointment with, but I have one in a month or so. I was wondering if any one had experience with said symptom and what worked for you. I'm currently doing yoga, to stretch everything out...in general I'm also more of a natural remedy kinda gal, though not opposed to conventional medicine.

Fire away!
I appreciate it.
1 comment|post comment

Good Evening [02 Sep 2008|05:16pm]

I believe my son may have Marfan Syndrome. He has been having chest pain since March. We started on the track with the General Physician. We've moved toward the pediatric cardiologist in the area. First it was his stomach/stress. Then it was that his chest wall was inflamed. This has been a scary 6 months. I have contacted the local doctors in the Marfan Syndrome Foundation directory. I have heard back from one that moved out of the area. I am waiting to hear back from the other. Nice to meet you guys.
1 comment|post comment

[01 Aug 2008|04:26pm]

[ mood | hopeful ]

Hey everyone. I don't think I've ever posted in this community before, but I have a couple of questions so I guess now is a good time to start.

My first question involves Cozaar/Losartan. My last cardiologist started me on 50 mg of Atenolol a day about 2 years ago when I was first diagnosed with Marfan Syndrome. I've been feeling great ever since and haven't had any problems with it. Now I have a new cardiologist and he thinks it's best that I stay on Atenolol. However, he also wants to try 25 mg of Cozaar per day for a month while I'm still taking Atenolol to see if it will help my aorta. This seems like a great idea and I'm really excited because it seems to be working wonders for a lot of people. But I'm worried that taking the two of together is going to make me totally exhausted or have other side effects. I'm about to go back to school to take 20 credit hours and work during the week so I can't afford to be tired all the time. So my question is: Have any of you taken Atenolol and Cozaar together and had any weird or unwanted side effects?

My other question is about yoga. I'll be starting my junior year of college in a few weeks and I'm taking yoga this semester. I can't wait! But I'm a little worried that I won't be able to do some poses because of the way I'm built. I actually can't even sit Indian style on the floor. I don't know if it's because of how long my legs are or because my joints can't handle it, but my legs just won't go that way. I can do it sitting on a bed, but not without difficulty. Has anyone else had similar issues? Does it keep you from being able to do yoga poses correctly?

I hope you guys have some answers. Thanks in advance.

3 comments|post comment

False lense replacement? [10 Jul 2008|09:38pm]

Bah! Inactivity.

Okay, so. Awhile back, I went to the Mayo Clinic in Rochester, Minnesota. (Which is nothing new, it's my hospital/clinic/whatev. after all) and, since I had my lenses removed eleven years ago, I've been greatly awaiting the day when my optometrists would say: "You can have artificial lenses put in your eyes now, with no problems!"

Well, I didn't exactly get that, but it was close.

When they took my lenses out, they also took it's surrounding connective tissue - which isn't bad, but that's proving to be an issue. Basically, what the doctor said was that I did choose to have the lenses put in, they would either have to stitch them in, or they'd just let it rest behind my iris.

If they stitch them in, there's a BIG CHANCE of infection, and that's to be expected, and then there's the chance that they'll need to be replaced.

The chances of them just setting the lens behind my iris is little, because they don't think it would be the best option for me. So we really didn't go into discussion about that.

I'm almost 20 now, and while I'd LOVELOVELOVE to never have to deal with these thick, gaudy contacts ever again, and to just have decent eyesight where nobody would be able to tell the difference - I don't like the chance that I'll end up having an infection, nor do I want to end up going back in 10 years from now and having to have them replaced.

So, even though my minds slightly made up already, what would you all do? Would you take the chance if it meant that you wouldn't have to deal with contacts/coke bottle glasses ever again? Have any of you had this procedure before? If so, how've you done with it thus far?

Any and all responses and opinions are greatly appreciated!

AND! Because I just got my hair cut and coloured last week, and I absolutely adore it - here's a new picture!Collapse )
1 comment|post comment

[07 Jun 2008|02:24pm]

post comment

Coumadin sux [29 Apr 2008|09:18pm]

I`ve been away fer awhile

took a break from the world and focused locally

las time I posted, I had just got home from my aortic root/valve replacement

bout a month and a half after the knife, I was resting at home and started getting pressure in my chest...steadily increasing in intensity for acouple days....lost my appetite, thought I had gas and was nauseated....that turned into vomiting uncontrollably about two days later and dizziness and shortness of breathe...I didn`t have the energy to stand up, my chest hurt, my neck hurt, and I felt like there was a rock in my throat

after 4 days of this crap, Dee talked me into going to the doctor (I thought it was the bad flu that was going around)

I rolled into the Docs office in a wheelchair unable to walk or stand....long story short, I was hospitalized for anemia and dehydration....the IV fluids made my abdomen grow....yeah....I said to myself "I have a hemmorhage"....after NUMEROUS explanations of Marfan`s to thew nurse, I called my surgeon from my hospital room and asked for his Nurse to have me CT scanned for a hemmorhage (which he explained he would do however, I should not worry as I shouldn`t be able to self-diagnose a hemmorhage anyway)

CT scan tech called the other hospital in town (the one I got the surgery at) and had an ambulance sent right over...tests showed I had a HUGE hemmorhage....pericarditis....went into surgery AGAIN and had it drained....TWO LITRES of blood/fluid in my pericardial sack....largest they had ever seen...8 more days in the hospital and I will NEVER skip a PTIR test again....I was in the 7`s, I think they said....they claimed I missed dying by about 6 hours


get yer PTIR tests done REGULARLY and follow the instructional packet TO A "T".....or suffer like I did...about 4 lbs of broccoli and a gallon of cranbery juice and missing my blood test that week damn near nailed my coffin
17 comments|post comment

[30 Mar 2008|09:57pm]

Hi everyone, I was wondering if anyone had any experience with the repair of pectus excavatum? Or any experiences in general? Thanks!
2 comments|post comment

ATTN: Need an Accupuncturist! [12 Mar 2008|08:05pm]

[ mood | desperate ]


Like many of you, I suffer from chronic pain. I have been searching for over 3 months for an accupuncturist in the METRO RICHMOND, VIRGINIA area w/o any success; since I had my second lense removal surgery and cannot do much research on my own w/o having to take a rest. (My eyes are currently not working together.) I have asked many of my Dr's for a name, but the only responses I've gotten are "I know of one, but forgot their name", and a referral from my Neurologist that just says "Ref for Accupuncture". When I asked if he knew anyone, he said no.


Thank you!

~ Jibrille

post comment

Kind of venting... [28 Feb 2008|01:53pm]

 As a person with Marfan Syndrome, I've grown up hearing the danger of enlarged arteries.  My focus has been being healthy and doing everything I can to prevent an aneurysm. I haven't been able to participate in some contact sports that I otherwise would have enjoyed.  I have the same issues most of you have finding long enough pants and big enough shoes.  I see many different doctors annually.  But, that is the extent that having Marfan has affected me.  I'm 22, and my aorta is only slightly dilated.  My pulmonary artery is actually the artery that's been expanding more than a usual, but it hasn't been a big concern.  I'm really lucky, because I haven't had to deal with heart surgeries like some of you, I don't have that chest hole thing, and I don't even have to take beta blockers since my blood pressure is very low as it is.  I got out with the best case scenario with this condition.

With that said, two months ago, I got a huge surprise!  My arteries WEREN'T the only things that could go wrong now.  The connective tissue holding my retinas in place are weak, and I had a retinal detachment in one eye.  There were breaks everywhere.  I was completely surprised by this.  I see a very good eye doctor every summer.  I had to undergo emergency surgery Dec. 23rd.  The surgeon had to buckle and laser my retina in place, and further keep it's position by putting an air bubble in my eye.  For two weeks, I had to keep my head parallel to the ground to keep the air bubble in position which in turn kept my retina in position.  I had to sleep with my head face down.  It was the most uncomfortable experience I have ever had.  I couldn't go back to college this spring semester, because healing was taking so long, and there were complications in my cornea.  All last month, I was in so much pain, that getting up was just wasn't plausible.  When your eye hurts, your nose and your head hurts too, and then it just gets to you.  Thankfully, the surgery was a success, and I have regained my vision.  However, the air bubble is still in my eye.  It is supposed to dissipate over time, which it has, but it goes away very slowly.  And today, I just about had it.  I am so sick of this stupid bubble being in my eye.  And lately, it's been splitting up into smaller bubbles, so it's not one bubble anymore, but a cluster of little bubbles.  It's been over two months, and I am just sick of dealing with this!  And when this eye heals, I have to get another surgery done on my other eye, because there is retinal tearing there.  The recovery process won't be nearly as bad.

I just had to vent to you guys, because I think you would understand. I know there are much much worse things that could happen to me with this condition.  I have my vision back, and it'll be even better than it was before once the bubbles go away.  But I just had to get all this negative energy OUT!  

Thanks for reading :D
6 comments|post comment

Newbie [19 Jan 2008|08:39pm]

Hey there guys! I stumbled across this group in a search, and so joined. 

I haven't been officially diagnosed with Marfan's as of yet (am age 18, currently, was evaluated when I was 15), but I'm pretty sure that I have it. I'm short one major criteria required for diagnosis, because my aorta is dialated a bit more than normal but the cardiologist said I'll probably grow into it (then again, I haven't been back in two years, so dunno how that worked out), and my eyes are normal. I am, however, the posterboy for skeletal symptoms, being 6'1" and 135 lbs, pectus carinatum, hypermobility, stretch marks, positive wrist and thumb indicators, scoliosis, and flat feet. I'm pretty sure my wingspan exceed my height by a slight margin too, but haven't accurately measured lately. 

Anyway, I also lack a family history of official Marfan's, but the men on my dad's side were always tall, and some were noticeably thin, and hence I get told that I look like my great-grandfather or whatnot. However, no one before me was diagnosed or even evaluated, so family history is out the window, as my father doesn't have it and neither does my grandfather. BUT, another twist in the plot, my youngest brother exhibits symptoms, like being tall and thin for his age, with a pectus carinatum. He hasn't been evaluated for Marfan's. That's enough familial evidence for me, but not for doctors. I don't necessarily blame them, but it sucks. 

So in essence, I think I have it. It's one of those thing you just <i>know</i>, you know? The echocardiogram didn't show any dangerous abnormalities with my heart, but oftentimes I'm very... aware of my heart because the beating produces a sensation, a feeling. It's something akin to pain, but it's not painful. It's strange. I also, after sitting down and then standing up (especially when hot), get tunnel vision and feel faint (and have fainted on occasion). I know that's nothing spectacular in relation to Marfan's, but fainting because of that is because of the blood flow to your brain, and if there's an abnormality in my heart, however slight, then that would explain why the blood flow would induce such spells. 

Yeah. It's basically a waiting game for me; not a question of if, but when. Until either my aorta goes to hell, or my eyes screw up royally (both of which, coincidentally, are associated with age), I doubt I'll be diagnosed, which sucks majorly. In any event, (if I do have it) I have a rather mild case of it, from what I've seen/read of you all. Anyway, I'm happy to be here, even if I'm not officially a Marf kid. XD
1 comment|post comment

HOME!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!! [05 Dec 2007|01:13pm]

I am sorry forhogging up this place and such but I just got realeasedd

I am zHOme...(on lots meds) but I will tell later...new valve new aortic root and was back home on the 4thd day thanks to former Walter Reed Medical Center surgeon (US ARMY) Paul Moore MD who happpens to do Brechtal or whatever the tech name for the replace is right friggin here in BG KY nowadays....had the absolute best nursing staff and recovery staf ever...narrow scar but long, cheslooks more pronounced at the sternum now but screw it....I am alive and I can`t feel any pain either meds,high on life, or both

wiill tell y`all later the whole story


12 comments|post comment

Update part three [04 Dec 2007|08:43am]

this is De'Onna, delivering a message from Doug...

Thank you, thank you, thank you, every single one... for all the prayers and positive energy. It worked!!! Doug is, as usual, FABULOUS!!! He came through everything brilliantly. We hope to get the drainage tube out tonight and tomorrow he can come home!! It's almost bizarre how well everything has gone. We are so very blessed with SO MANY good friends and you all, in particular, have been a GREAT source of strength to him. I have never seen this man afraid of anything... and that has been the worst part of this whole thing... to see him afraid and be helpless to ease his fears. This board was the only place that really could appreciate what he was going through... and when we first got the news, I know you all calmed him considerably. So THANK YOU ALL SO MUCH!

He actually looks better than he did before the surgery... he's absolutely gorgeous! He gave us all an immediate thumbs up after surgery and as soon as they extubated him he said, "I'm alive!! I made it!!"... over and over again, with this big cheezy grin on his face... LOL... it was GREAT.

Neither one of us thinks we could have gotten through all this without your love and support.

Thanks you guys. :)
7 comments|post comment

Update part two [27 Nov 2007|01:37pm]

Ok....got the call from the Surgeon this afternoon

Surgery Monday Dec. 3...."get here at crack of dawn,we`ll be waiting for you as yer the first surgery that day" is what I was told...

Send good energy toward The Medical Center in Bowling Green KY....Surgeon is Doctor Paul Moore...my real name is Doug Henricks...I need the positive energy...and I`m a little scared NOT to ask for it and ain`t afraid to admit that.

and if I haven`t said it before, I am truly thankful for all the kind words, the support of this community, and how much you all have helped put my fears at ease....I hope to repay the favor someday and I urge you all here who aren`t taking good care of yourselves to get on the ball and love yerself enough to get regular checkups...I am so thankfull they found this in time....7.1 cm is so close to disaster and I wouldn`t have known had it not been for a long overdue visit to the Family Doc for a checkup...as I haven`t had a Doc visit since 2001 until three weeks ago....way too long I have neglected this condition...I chalk it up to laziness, fear, procrastination, and outright denial and would hope not to lose anyone from here because they chose to follow in my footsteps.

I would like to try and get a good vid camera and document the whole thing in the hopes that I might even ease the fears of anyone else facing this same stuff....thanks to those from here who have been through this all before I was, I was able to come to grips with my fears and denial and have the courage to go through with it ASAP...instead of running away from the Doc`s office screaming...I always thought I was tough enough not to fear anythign but I guess I was wrong..and if it weren`t for the Surgery victims from here, I would have had noone to talk to and had no idea what to expect except the worse...and I am so VERY thankful

take care of yourselves...I can`t emphasize that enough

4 comments|post comment

Update [23 Nov 2007|07:25am]

found a surgeon here in BG with experience doing aortic grafts and valve replacements....so I get to stay here @ the Medical Center...they have other Marf patients as well

CT scan with contrast dye showed I am actually dilated to 7.1 cm and not 6.1 as originally thought

I go in Tues. for oral surgery to remove problem teeth to insure no orally-based infections getting to my heart during surgery

arch looks good...got a catheter thru the groin yesterday to look for coronary artery disease in case they would have to fix that as well...all looks great on that...

after three or four days to heal from oral surgery, I go in for the aorta and valve....they say two weeks in hosp. recov. and two weeks home best-case and I`ll be back up and running

My Docs were so arrogant, I can`t help but feel confident....not arrogant in a rude way....very nice but very self-assured....they showed me the video form the CT also to help me understand the scope of the aneurism

7.1 cm is one big-ass aneurism!!!!!...I`m supposed to stayed rested so as not to dissect it before I get in on the table....updates to come later

thanks for your thoughts and prayers
4 comments|post comment

[ viewing | most recent entries ]
[ go | earlier ]