Roller coaster

[srwieland]

To all of my great heart buddies out there:

As some of you may know, I have been on quite a bit of a roller coaster over the last few months. Well, the ride has now gotten even wilder!

Last week, I had a very difficult time, with severe edema in my ankles, shins, and stomach, extreme fatigue, and much wooziness. Last Thursday, I ended up going in an ambulance to the ER for a near fainting episode and then was admitted to the hospital. They said that, given these symptoms and the fact that my last echo in mid-May had shown a left ventricle size of 64 and severe aortic regurgitation, they would keep me in over the weekend and perform AVR on Monday.

After 2 days in a hospital bed, I was much improved and so they released me on Saturday to check in with the surgeon on Monday. On Monday, he scheduled my surgery for June 12, next Wednesday. He also had me do another echo. My cardiologist was still extremely anxious that I have the surgery STAT (hospital lingo for immediately).

This morning (Thursday), my surgeon calls me to say that the echo done on Monday has shown a most phenomenal turnaround; my left ventricle size had reduced to 55 and the leakage to mild. My EF had risen again to the 55-60% level. All of this is truly remarkable and completely baffling to my surgeon and cardiologist.

So, they have canceled my surgery for now and have ordered a new battery of tests involving tilt boards, etc. Perhaps some of you are familiar with these sorts of things better than I, since it will be my first time to have them. In any case, they want to try to precipitate some of my symptoms in the lab, since it is very clear that my heart functions very differently under different conditions. Basically, it does really well when I'm horizontal and goes downhill really fast when I'm vertical!!!

Of course, this makes it really hard to work and carry on a normal life. It has been a very rough spring and I had finally resigned myself to having surgery again. Now, I'm totally bewildered.

Has anyone else ever experience or know of anyone who has experienced such a fluctuation in echo readings and symptoms? Any references or sources on this??

Thank you all again for all of your support, encouragement, information, and help in the past. A special thanks to Hank Eyring for creating and maintaining this wonderful site. By the way, I told quite a few patients, nurses, and doctors about this site during my last hospital stay, and they were all very interested. In fact, one of the nurses said that she was going to recommend it to all the valve replacement patients on her watch.

Steve

 

[Nancy]

Steve-

Riding a rollercoaster like that is puzzling and scary. It's especially hard when the doctors are puzzled. I can sympathize. We've been in those types of situations when Joe has had some really weird things happen.

I've discovered that when unusual things happen, you get lots of medical attention and generate interest from some of the best experts, sort of like a research project. Eventually they will have the right exact answer for you. I'm sure you're the subject of some medical meetings.

This will all work to your benefit though and I have confidence that everything will come out OK.

Stay brave and tough. My thoughts are with you.

 

[srwieland]

Thanks Nancy,

Your comments were especially helpful to see the silver lining in all this. It is true that I am getting a lot of good attention from various docs.

I always have to count my blessings and remember that others have gone through as much or more than me already. A good example is yourself and Joe. So, I'll take heart from your words and advantage of the special attention I'm getting and just accept this thing however it goes.

Thanks again and God bless,

Steve

 

[sylviayasgur]

wow steve!
you ARE on a rollercoaster! as nancy said though, you will be thoroughly checked now that the docs know that something is amiss. hopefully they will resolve whatever it is that is causing all these problems. hopefully, they will arrive at a way of keeping all those positive symptoms all the time.
wishing you all the best. please keep us up to date,
sylvia

 

[srwieland]

Thanks Sylvia,

Over the weekend, I got a second opinion from a Dr. McGiffin in Alabama.

He questions the accuracy of the echos I received and suspects that the variance between them is due to differences in how they were performed rather than in my condition. He suggested that an MRI would best determine the actual size of my left ventricle at this time. I will pose that possibility to my surgeon here in Florida.

Dr. McGiffin also did not feel that my valve choice options for this second surgery were any different than for the first. In that sense, I may be back to 'square one' in every sense!

He also believes that the wooziness and near fainting episodes are more from the meds, but that the extreme fatigue and edema are more from the condition.

I also visited on Saturday a local general practice physician who integrates conventional and alternative approaches. He encouraged me to do whatever I can to improve my circulation because this should prevent edema as well as help my heart get blood to my head to avoid dizziness. For this purpose, he suggested a minute or two a day, as much as I can tolerate, on a small trampoline, and an ayurvedic tonic. I've done the trampoline for two days now and it has already cleared up my ankles and shins.

Anyway, thank you again very much for all your support and encouragement.

Steve

 

[Ross]

Maybe we should change your screen name to bouncer?

You sure have your hands full. Let us know how it all works out in the long run. I'm sure you will, but I had to say it.

 

[srwieland]

Thanks Ross,

Yeah, either that or 'bullrider'! Of course, both might give the impression that I'm really tougher than I am!

By the way, how are you doing? What's happening with your bronchitis and surgery? You've been rollin' on the coaster a bit yourself!

Thanks again,

Steve

 

[Nancy]

Hi Steve-

I have to ask the obvious, and I'm sure with all the attention you've been getting from the "brains" that this has been covered, but anyhow:

Did you have a Holter monitor or event monitor for your fainting episodes? Did they check out yout heart rhythm?

When Joe had his fainting problems, it was due to wide variances in heart rhythm, from 40 bpm or less to 160 bpm or more. The low end rhythm caused the faints, of course. The pacemaker and beta blocker combo took care of that.

 

[srwieland]

Hi Nancy,

Yes, I have been outfitted with a Holter monitor several times for 24 hour periods, and wore an event monitor for about 45 days back in March/April. We were able to record minor episodes but none of the major ones (especially the near fainting).

Soon I will be undergoing an electrophysiology battery of tests, which should be able to precipitate variances in heart rhythm and associated symptoms while being monitored. They're definitely looking for some way to manage my condition in a way that will either delay or even eliminate my need for surgery.

If I can stay upright without my heart failing so I can work and lead a relatively normal life, I will certainly welcome putting off another surgery as long as possible, even if I am on medications and more or less back where I was for 25 years before my first surgery.

Thanks again and I'll keep you posted.

Steve

 

[Johnny Stephens]

Wow, Steve, you're really going through the wringer! It does sound as though the wide discrepancy between your echoes has raised some eyebrows. The MRI would be the definitive measurement of your LV size..are they going to do the MRI or are you going to have to push for it?

I had some dizziness and light-headedness before my meds were straightened out. Couple of times my BP was 90/55....turns out the dosage of Beta blocker I needed after surgery was only half what I needed pre-surgery. Once this was cut back, my wife didn't need to be in the room every time I stood up

 

[Nancy]

Hi Steve-

That battery of electrophysiology tests should be very helpful. What you want to happen never happens at the right time.

I always wondered about the event monitor. Uh--if Joe was on the floor in a faint, how could he possibly push the event button, unless of course, he woke up right away. As luck would have it, I was always there when these things happened, but he never had an event when the monitor was being used. It was the EMTs who clocked his heart rate, and that was after they got there quite a few minutes later. A couple of times right after the faint, I couldn't get a pulse. I guess, his heart was pausing also.

Take care,

 

[srwieland]

Johnny--I have yet to talk to my cardiologist or surgeon here about the MRI; hope to this week. Everyone I've consulted is pretty sure my dizziness/fainting is due to the meds, especially since my first near fainting episode was the same day I began them!

Nancy--the event monitor was great because it always had a couple minutes recorded, so that when I would experience an episode of dizziness or arrhythmia, I would hit the button and it would immediately save a minute and a half before and a minute after. Unfortunately, I only captured relatively minor events on it because the more serious events occurred before and after I was using it. Fortunately, I have never fully passed out, although I am sure I would have if I didn't follow the advice to get down horizontal right away to avert it.

Thanks again to you both, your comments have been very helpful and it's great not to feel so alone with this. Heck, my condition is clearly not as bad as some others. But, when it first happens to you and you don't know anything about it and never heard of anyone else having it, it can be pretty scary, especially feeling faint, because, for all you know at the time, you feel like you're dying.

Steve

 

[ALCapshaw]

Hi Steve,

Did you go to the University of Alabama Hospital in Birmingham (ALA)? Or did you just have a telephone interview with Dr. McGiffin?

While (back) in the CICU at UAB following my AVR for closer monitoring due to an A-fib event on day 4, I saw a most impressive surgeon making rounds. He went around talking to patients and nurses, the nurses obviously felt comfortable coming up to him with questions, and he had a pleasant manner / sense of humor all the while 'taking care of business'. It was none other than a Dr. McGiffin who had come to UAB from Australia. I was VERY impressed with his style and it was clear that the nurses held him in high regard. He is one of the 3 senior surgeons at UAB which is a highly regarded teaching hospital for heart surgery. I believe he specializes in 'high risk' heart surgeries but you may want to confirm that.

You didn't mention which medicines you were placed on prior to your latest episodes. I for one am curious. I had a LOT of 'events' during
my first two weeks of recovery including suspected TIA's, memory loss, momentarily not recognizing family members, onfusion, dizzyness, headache, and lightheadedness. I'm highly suspicious of my pain meds plus Lasix and maybe potassium.

Here's hoping you get some answers Steve, and especially relief!

'AL'

 

[srwieland]

Thanks Al.

I only had a phone conference with Dr. McGiffin, after he had reviewed all my records. Actually, he called me on my cell phone on a Sunday afternoon, which was pretty surprising. I too was very impressed with him and comfortable with his advice.

For the last month, until today, I have been on Accupril 20 mg in the morning and 40 mg in the evening, hydralazine 20 mg three times a day, and aspirin 325 mg. I have been swelling up in the ankles, shins, stomach, and face ever since starting on the hydralazine.

I did a net search the other day for edema of the stomach above the diaphragm, which I was experiencing almost to the point of bursting the other day, and among the dozen or so possible causes listed, the first was in fact hydralazine by name!

I informed my cardiologist and he asked me who had prescribed the hydralazine, since he had not. I informed him that it was a surgery resident when I was hospitalized in mid-May. He replied, "stop it immediately," which was music to my ears. Another lesson that you've always got to look out for yourself in this business.

In fact, I believe that most, if not all, of my symptoms have been due to the meds and not to my condition. I started out in January with the discovery of a mild to moderate leak, which was alarming, but not such an immediate problem. However, ever since I started back on meds, I've been woozy, extremely fatigued, unable to exert myself physically in any way, and now swelling up all over. I feel like just stopping the meds altogether.

On the bright side, I'm getting lots of extra attention lately. Today, Dr. Zehr from Mayo in Rochester called my echocardiology specialist and stirred up a lot of activity between her, my surgeon, and my cardiologist. Upon Dr. Zehr's recommendation, they are now going to do a TEE on me in two weeks. They want to get better and more reliable pictures of my heart size and function in order to determine if I can safely put off surgery any more or not.

In the meatime, indeed tomorrow, I will be undergoing a tilt table test to try to understand under what conditions I am feeling faint. Based on this, they will probably adjust my medication regimen.

Surgery is still not off the discussion table but is at least delayed. If they can keep my left ventricle size down on a medicaiton regimen that doesn't wreak havoc on me in other ways, then I won't be having surgery anytime soon. Otherwise, I'll be back on the chopping block in a month or two.

That's the latest update. I'll keep ya'll posted.

Thanks again,

Steve

 

[Nancy]

Good luck Steve. Thanks for letting us know what's happening. Please keep us posted.

 

[srwieland]

Thanks Nancy,

Just finished my tilt test and totally flunked! They couldn't get me to faint for nothing.

They told me all kinds of bad things would happen when they administered the Isuprel, such as nausea, flu symptoms, feeling really yukky, heart racing. Instead, it made me feel great. I had been feeling kind of yukky this morning already, but the drug made me feel like a million dollars. Go figure! I asked if I could take some more home with me, but they looked at me kind of funny! Oh well. Maybe I'm an alien!

Now they've given me a different kind of event monitor, like a card, and told me not to hold back in my activities to see if that will precipitate the fainting again.

So, the roller coaster is back on the upswing, which I think is a good thing. I will keep you posted.

Thanks again,

Steve