The call finally came yesterday. After 3 weeks of waiting, the call lasted about 45 seconds but changed the entire month of November in our lives.
Surgery date has been moved up......to November 5. NEXT WEEK!
When I tell people that we finally have a date, they say "Oh thats great news!" or "Congratulations!" And I guess it is great news. Originally, surgery was in December and the docs felt strongly enough that they arranged the OR scheduled to move it up. And honestly, it was the date I originally wanted - 4 to 5 weeks after the consultation appointment.
Why then do I feel paniced?!
Tuesday, October 27, 2009
Tuesday, October 20, 2009
A Teacher
We have started telling our friends and co-workers about the upcoming surgery. We didnt tell too many people when we were first told that we needed to start talking to the surgeon and making decisions. Its hard to tell people that you are having surgery when you dont have any information like when, where, and specifics about why and what the surgery is. And so, we told our immediate family and that's it.
Now, we still dont have a firm date but we know that it is sometime between next week and December 2. Seriously, that's all we know. At this point, we are on the surgery calendar for December 2 but the genetics doc and surgeon are working to move that date closer. And so, we wait for that phone call or email.
In the meantime, we are preparing. Dentist visits to check for gum infections. Flu shots to prevent the family from getting sick during recovery. Not RSVPing to any invitations because we have no idea if we can go to events.
But most of all, I find myself teaching. My friends, family, co-workers. Everyone I tell about the surgery it seems. Heart surgery - everyone gets that part of it. But throw in a term like "Marfan Syndrome" and the glossy look spreads across their eyes because they have no idea what that is. I think I have developed a pretty good "elevator speech" for describing the condition.
Sometimes I get tired of explaining it. Sometimes I just want them to already know about it and not ask me to tell them that my daughter has it too. But most of the time, I am thrilled that I have a chance to teach one more person what Marfan Syndrome is and what to look for if they think someone in their family could have the condition. Because the more people we teach about Marfan Syndrome, the more lives can be saved by management of the condition.
And that is my job as the wife and mother of Marfan patients. So teach I will.
Now, we still dont have a firm date but we know that it is sometime between next week and December 2. Seriously, that's all we know. At this point, we are on the surgery calendar for December 2 but the genetics doc and surgeon are working to move that date closer. And so, we wait for that phone call or email.
In the meantime, we are preparing. Dentist visits to check for gum infections. Flu shots to prevent the family from getting sick during recovery. Not RSVPing to any invitations because we have no idea if we can go to events.
But most of all, I find myself teaching. My friends, family, co-workers. Everyone I tell about the surgery it seems. Heart surgery - everyone gets that part of it. But throw in a term like "Marfan Syndrome" and the glossy look spreads across their eyes because they have no idea what that is. I think I have developed a pretty good "elevator speech" for describing the condition.
Sometimes I get tired of explaining it. Sometimes I just want them to already know about it and not ask me to tell them that my daughter has it too. But most of the time, I am thrilled that I have a chance to teach one more person what Marfan Syndrome is and what to look for if they think someone in their family could have the condition. Because the more people we teach about Marfan Syndrome, the more lives can be saved by management of the condition.
And that is my job as the wife and mother of Marfan patients. So teach I will.
Thursday, October 15, 2009
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.
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.
Wednesday, October 7, 2009
Being Prepared
Preparation is key to living our lives with Marfan Syndrome. Sure, there are so many things you cant plan for but having the right doctors, asking the right questions, gathering the information to manage the syndrome makes life a little easier for us.
We have known for years that Hubby would have to have Aortic Root surgery - its one of the unfortunate realities of having Marfan Syndrome. We just weren't ready to hear that it was time. Yesterday, we met the surgeon. We heard about the procedure and about valves. We talked about all the "what ifs". And we made decisions.
Now we wait for the call from the scheduler with the surgery date.
A month ago, when we found out that the surgery needed to be done now (not in 2 years like we thought), I was not prepared. The last few weeks, I have been sad, angry, frustarated, stressed, and depressed. And Hubby has too. Its not a fun way to exist. Through all the research we did on our own, all the statistics we learned and all the forum messages we read from past patients, we walked into that appointment yesterday knowing what was happening.
And that made it better. And it will make the next few weeks of surgery prep better. Because being prepared makes the process just a little easier on us.
We have known for years that Hubby would have to have Aortic Root surgery - its one of the unfortunate realities of having Marfan Syndrome. We just weren't ready to hear that it was time. Yesterday, we met the surgeon. We heard about the procedure and about valves. We talked about all the "what ifs". And we made decisions.
Now we wait for the call from the scheduler with the surgery date.
A month ago, when we found out that the surgery needed to be done now (not in 2 years like we thought), I was not prepared. The last few weeks, I have been sad, angry, frustarated, stressed, and depressed. And Hubby has too. Its not a fun way to exist. Through all the research we did on our own, all the statistics we learned and all the forum messages we read from past patients, we walked into that appointment yesterday knowing what was happening.
And that made it better. And it will make the next few weeks of surgery prep better. Because being prepared makes the process just a little easier on us.
Friday, October 2, 2009
Our Doc's Award
Dr Duke Cameron was honored with the 2009 Antoine Marfan Award. I am so thrilled that he will be the doctor performing Hubby's surgery - we really are lucky to live so close to great Marfan doctors.
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.
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.
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