Annual Visit

Yesterday was full of nerves - the annual visit to Hopkins for B and G's checkups at the genetics clinic.  The result of the 6 hours worth of doctor appointments - status quo.  And I am just fine with that.

G has always gotten a good report.  B, on the other hand, not so much.  It seems like every time we talk to someone in the medical field, Hubby needs this or that or something else.  We both feel this way.  This time, though, was different.  While he is getting a referral to see one of the other rock-star cardiologists at Hopkins for a consult/review, he got a good report.  No surgeries in the near future.  Meds stay the same and we even got to add the miracle drug that is currently in trials for Marfan patients.  (And yes, I AM that excited about adding a medication - this med is doing remarkable things for Marfan patients with the kind of aorta damage that Hubby has.)  

I woke up this morning feeling so much better.  We got through it - surgery #2 is over.  Yep, Hubby will tick forever but with a good report from the Hopkins docs, I feel like I can relax and move on from that whole surgery management (thats what I call my role in the procedures!).  

The next hurdle starts tomorrow night. Last week B went in for a sleep study. The results were not surprising,,,,to me at least - sleep apnea - positive.  Looks like a CPAP machine is joining the family.  Tomorrow B goes back to the sleep center for a machine test and then we bring one home.  I am sure the machine will be irritating to us both but getting a real night's sleep is so important that it will be worth it.  I wonder how he will feel after getting a restful nights sleep - bet he feels like a whole new person!!

A Fresh Start

I started this blog for me. The intention was to give myself a place to "talk" about Marfan Syndrome and maybe one day have this blog reach others living with Marfan as well.  But I have not taken very good care of it, have I?  The last post was from 4 days into B's most recent surgery recovery.  That seems so long ago already.

How about a quick "catch up"?

Me:  Today is March 5 and I feel like the next few months, though the calendar is busy, are going to be good ones.  Not without challenges (more on those later!) but good times are ahead of us!

B:  Amazing recovery from his aortic valve replacement surgery in November.  The scar is looking better each day and we are getting used to the sound of the mechanical valve.  He is back at work full time; he actually started working again after 10 weeks at home.

G:  She is about the have a birthday - I cannot believe she is 6 years old.  No changes medically for her since the last appointment in Baltimore.

And so, I give this blog a fresh start.  Starting tomorrow morning.  We shall simply pick up there. 

Day 4

Surgery recovery is hard.  The incision hurts.  Nurses poke with needles at all hours of night.  Sleep is non-existent.  Machines beep.  And you have to drag an IV pole everywhere with you for days at a time.

What no one tells you is how boring it can be too.  You can only watch bad daytime tv for so long.  Magazines get so unexciting.  Yes, even the crappy gossip mags arent entertaining anymore.

Today we spent time napping and reading and did some Christmas shopping research online for Grace.

And tomorrow, we will probably do the same thing.

We are both really looking forward to going home to our own bed, our own tv selections, and most of all, our little girl.

New Ticker

5 1/2 hours of waiting.  Three update calls from the OR nurse.  Two magazines read cover to cover and back again.  Two trips to the coffee cart for more caffeine. 

And one really happy wife when the surgeon came out and said that the surgery went well and the patient was great!!!

On Thursday, B had aortic root replacement.  We had hoped going into the OR that the aortic valve could be saved - the valve-sparing procedure was just what we really wanted to do and it seemed that B was a good candidate for it with this surgeon.  Once in the OR, the aortic valve was damaged - a few tears and holes in the flaps indicated that it would have to be replaced within 10 years so the surgeon decided to replace it now.  A good decision as we would prefer to avoid this in the future but honestly, we were a bit disappointed.  With the mechanical valve, B will need to take blood thinner for the rest of his life.  You can hear the valve clicking - it sounds like a faint tick of a clock.  He says that he can feel it too.  Over time, we wont hear it anymore cause we will be used to the sound.  However, sitting in a meeting or in an elevator, people around B will hear it. 

B is doing so great......22 hours after being wheeled into the OR, he was released from ICU and is now resting in the cardiac surgery unit.  And it looks like we will be out of the hospital on Tuesday. 

My New Nickname

 Well, we have a surgery date but neither of us is really happy with it.  We have made all the decisions and just want to get on with the show.  Get in there, fix the problem, and move on with our life.  How many people do you know who wish for a surgery date sooner!!!???

It has only been a week or so since the consultation with the surgeon.  Since then, B has been to the dentist per the surgeon's request, flu shot appointments have been made for the entire family this weekend, and we have figured out vacation pay from both our jobs to cover our time out of the office.  I have my family on hold so that they can take care of G while I take care of B in the hospital for a week.  And I have updated the medical history and doctor contact information in B's Marfan Binder. 


All that in a week and we are still 6 1/2 weeks away from the surgery date.  My list of to dos as we get closer to the date gets longer and longer. 

But that is what the Marfan Manager Mom does.

Hubby's Marfan Report Card

So last month's visit to Hopk.ins was great for G - an A+ for her.

Hubby got an F.  A big fat red, bold, italicized F.

Besides a sleep study, monitoring his left kidney function, and a weight loss program, Hubby will be going under the knife again......very soon.  In 2007, he had his descending aorta repaired after a dissection that occurred in  2002.  Now, 2 1/2 years later, we are preparing for surgery on his ascending aorta and his aortic valve.   We knew this surgery was coming - just thought we had more time. 

I have Googl.ed.  I have researched the surgeon over and over (so cool that he has his own page on Wiki.pedia!!).  We have looked at the different kinds of procedures.  And all I have are more questions. 

On Tuesday, we meet the surgeon and get some answers.  And then the planning begins for the recovery.  Because for me, the caretaker, the time in the hospital is the easiest part - its the three month recovery at home that is the most challenging. 

History of Us

I feel like I have to qualify myself to write this blog. I know its my blog and I dont really have to but it feels good to look back sometimes. To acknowledge what we have experienced and what we have survived. Its cliche but it does make us stronger.

In 2001, I met the most hysterical, supportive, nicest guy ever. His name was B. We hit it off immediately.

In 2002, B called me from work to tell me he was going to the hospital and he wasnt sure what was wrong. He just knew something was seriosuly not right with him. Thank God he made that call and that the ER doctor listened to the crazy girlfirend (that's me!) about Marfan Syndrome. After a CT scan, it was determined that B was in the midst of a descending aortic dissection. A short helicopter ride later, he was in the ICU at a fabulous hospital for 8 days. That was the first introduction I had to Marfan-related issues.

After getting married, we welcome G into our hearts and lives in 2004. She is the light of our lives and yes, the world that we live in does actually revolve around her. :)

Just this week, Monday to be exact, we took G to the eye doctor. For the past few months, I noticed her eye turning in sometimes. I had "lazy eye" as a kid so that is what I thought it was. Even with all the years of researching and preparing, we werent ready to hear the words "Dislocated lenses. Yes, G has Marfan Syndrome as well".

And here we are today.