October 27, 2010

I've finally figured out a use for my blog - since I haven't posted anything to it in nearly a year! I will use this space to post updates on Jaime's health. After he's been stabilized and things are back to normal (whatever THAT is), I'll get back to posting pictures, etc.

You are welcome to leave comments. We can use all the emotional support we can get!

♥Jane

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Here are the e-mails I've sent out to date:

October 27, 2010


Dear Friends and family,

This past week and a half has been an emotional roller coaster. When Jaime was released from the hospital last week, he had great difficulty sleeping. Lying in bed, he would start choking and felt like he couldn’t draw in enough air. Propping him up with pillows helped, but it was a very worrisome time. By the weekend, Jaime was feeling better, and we began to think his trouble sleeping was possibly due to the residual pneumonia in his system.

On Monday, he saw Dr. Heery (his local cardiologist) who concurred that Jaime’s difficulty breathing was quite probably due to the lingering effects of the pneumonia. With regard to Jaime's heart function, Dr. Heery told us that an echocardiogram taken on October 14 when Jaime was in the hospital indicated an LVEF (left ventrical evacuation fraction) of 55%. (The echocardiogram taken on September 20 when Jaime had his first catheterization showed an LVEF of 35%.) Since any percentage above 50 -55% is considered “good”, Dr. Heery thought perhaps Jaime might not need to have the valve procedure at all! This was the best news we’d heard since this all started! He did mention, however, that if Jaime DID need to have the valve procedure, there were only three places that could do it: the Cleveland Clinic in Ohio, the Mayo Clinic in Minnesota and Brigham and Women’s Hospital (Harvard) in Massachusetts. Dr. Heery did another echocardiogram and asked Jaime to come back in two weeks.

On Tuesday (yesterday), Jaime and I went to Jacksonville to see Dr. Leon, hoping he would agree with Dr. Heery’s suggestion that Jaime might not need the valve procedure. Dr. Leon (after soundly scolding Jaime for not going directly to the ER last week when he was having breathing problems), concurred – with reservations. Should Jaime decide not to have anything done, his activities would be severely restricted. He would no longer be able to ride his bike or take long walks, for instance. Furthermore, his condition would steadily deteriorate – not necessarily any time soon, however. Jaime’s heart condition, we found out, is a lot more complicated than we initially thought, and any procedure done would be considered extremely high risk. Dr. Leon agreed with Dr. Heery that there are really only three places that could help Jaime. So that Jaime can make his decision with all the necessary information, we have decided to go to the Cleveland Clinic for consultation. Dr. Leon will be contacting an associate there and make the arrangements. In the meantime, he gave Jaime a prescription for a medication that will help the valve function and scheduled him for another appointment in Jacksonville on November 30. I don’t know when we’ll be going to Cleveland but, obviously, it won’t be before December.

So, anyway, this is where we stand as of October 27, 2010. I will probably not be updating this chronicle until after we visit the Cleveland Clinic - unless something new comes up.

In the meantime, we want you all to know how much your support has meant to us throughout this ordeal! Your positive thoughts, prayers, love, suggestions and advice have made a huge difference. Now that Jaime has decided he can start driving again and I’ll actually have a little free time, I hope to be able to start answering the backlog of e-mails!

…’til next time.

Love,
Jane & Jaime

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October 18, 2010


Hi, everyone!

Jaime was released from the hospital today. Yay! He'll be on a 5-day oral antibiotic regimen (one 750 mg Levaquin tab per day). I couldn't believe the cost: $182 for 5 pills!!! Yikes! But if they do the job, that's all that counts. Jaime's next appointments are with his local cardiologist and the lung specialist on November 1. By then, we'll know when Jaime will be able to travel to Jacksonville for his consultation with the St. Vincent's cardiologist. And from there we'll be ready - hopefully - to schedule his valve procedure.

Jaime is weak and tired and has pretty much lost his voice. Additionally, he has lost 14 pounds over the past 5 days! I know he wasn't eating the first couple days he was in the hospital - and he was on some pretty heavy-duty diuretics - but still, that is a lot of weight to lose in such a short period of time. Fortunately, his appetite has improved, and I'm hoping he'll regain his strength quickly.

Thanks to all of you for your support. I'll keep you posted as the saga continues to unfold....

Jane


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October 16, 2010


Dear friends and family,

I’m sorry I’ve been incommunicado for so long, but Jaime’s health has been a concern of late. His back problems, while still an issue, are waaaaaaaaay on the back burner for the time being. He’d been suffering a malaise for the past several months; then in early September he had a mild cardiac episode. Since it only lasted a few minutes and he felt no after-effects, he ignored it. Three weeks later, he had another one – not so mild. Although I could not convince him to go to the hospital, I did get him in to see his cardiologist the next day (Friday, September 17). The doctor, of course, wanted Jaime admitted to the hospital, but again, Jaime refused. He then said that Jaime needed to have a catheterization to see what the problem was and possibly have a stent (or two) inserted. The only problem with this was that our local hospital is not equipped for open-heart surgery (the back-up option if a stent is not possible), and so they could only do a simple stent. If a more complicated procedure was necessary, they would have to send him to Jacksonville. Since Jaime did not want to have to go through the procedure twice, he opted to go straight to Jacksonville (St. Vincent’s Hospital). Unfortunately, they couldn’t take him until the following Monday, so on Sunday, we drove down to Jacksonville and stayed in a hotel so we wouldn’t have to get up quite so early for his 6:30 am appointment. We were, of course, there in plenty of time to wait three hours!

Before the catheterization, they did some other tests, one of which revealed problems with Jaime’s heart valves. Three of them have fairly major leaks. Dr. Leon (the cardiologist who performed the procedure) did not insert a stent during the catheterization because Jaime’s heart went into fibrillation during the procedure, and they had to apply shock treatment. Afterwards, Dr. Leon called in a heart surgeon to discuss treatment options. Since Jaime cannot have further open heart surgery (as you may recall, he had to have a sternectomy following a horrendous staph infection six years ago), it was decided that they would go ahead and insert a stent in the LAD (lower anterior descending) artery and then send Jaime to the Cleveland Clinic (or another facility capable of performing minimally-invasive heart valve repair/replacement surgery. As you can imagine, there are not a whole lot of hospitals capable of performing this procedure, so Dr. Leon told us he would investigate the possibilities. Another catheterization was performed on Wednesday (September 22) and a stent inserted. Jaime was discharged the following day. A follow-up appointment was made with Dr. Leon for Tuesday, October 12 where his continued treatment would be discussed.

Although Jaime’s chest pains disappeared (thanks to the stent), his shortness of breath was becoming more pronounced – due to the leaky valves. On Saturday, October 9, I was away for the day, playing in a tennis tournament on Jekyll Island. When I got home, Jaime told me he had been running a fever all day and had tried to call his local cardiologist but, since it was the weekend, had not been able to reach him. The doctor handling calls, however, told him to go to ER for a blood culture. Jaime was afraid the stent had become infected. Both the cardiologist and the ER doctors assured him that that was not probable, but lung x-rays revealed the likelihood of pneumonia. He was given an intravenous antibiotic treatment. The ER doctor wanted Jaime admitted to the hospital for continued treatment, but Jaime adamantly refused, so he was given a prescription for oral antibiotics, and we went home. We changed Jaime’s appointment with the Jacksonville cardiologist to Tuesday, October 19.

Unfortunately, by Wednesday, Jaime was in worse shape than he’d been since the start of his treatments, so his local cardiologist referred him to a pulmonary physician who sent him directly to the hospital. He has been receiving proper care now, and we are hoping he will bounce back soon. The bad news is he cannot have the valve procedure until the pneumonia is completely gone – and we were told it could take 4 to 6 weeks. I don’t know how long he’ll be in the hospital, but I am hoping he won’t be discharged until things are completely under control. I do hope, however, that he will be able to see Dr. Leon soon to find out where he will be heading for the valve procedure when he is ready.

I will try to keep you updated, and I apologize for the informality of a “blanket” e-mail, but I have not been spending much time at home the past few days. If you would rather not receive these, please let me know.

Prayers and healing thoughts for Jaime’s speedy recovery will be much appreciated!!!

Love,
Jane