Dropped like a rock

[LoriSue]

HI All. It has been a while since my last post...or at least it feels that way. I have been trying to get myself together. I have been feeling real bizarre this week. My BP continues to stay in the 80's/50's range and when I wake up my diastolic is in the low 40's. I told the cardio about it last Tuesday and he responded with somewhat mild curiosity. He didn't seem overly concerned about it but for Pete's sakes......I feel like crap when it is that low. I thought when they gave me back my digoxin (14 days back on now) that I would feel much better than this. Don't get me wrong, I feel a lot better than I did about 4 weeks ago but I guess I expected to be better than this. Well, last week the cardio ordered a Cardiolite test which I had done this morning.
At last I might be able to get rid of some of this frustration. I finally passed out in front of the doctor instead of it happening at home. Before we even started the test he told me to let him know when I felt lightheaded or dizzy. I told him that I felt that way already. I guess he thought I was joking. My heart rate only got to 97 before I was having trouble with my vision. He told me that if we didn't get my heart rate up to 150 the test would not give the best results. Well, I thought about that while I was huffing and puffing my way into delirium and decided that I was going to keep going no matter what. I was tired of trying to explain the symptoms to doctors who want to blame hormones, anxiety, age, etc., etc. for the problems I am dealing with. So I kept going. I honestly could not see straight for about the last half of the test. I focused on one point on the wall in front of me the best I could and hung on the bar for all she was worth. It was probably a stupid thing to do but I was determined not to leave that treadmill until that test was completed and I figured it was probably best if I did pass out that it happen in front of the cardio and medical staff as opposed to at home by myself.
I don't know how long I actually went but one minute I was getting more disoriented and my vision was really bad but I was still upright and my feet were still moving and then the next minute the cardio, and the other two people were saying to me "you gave us quite a scare". I don't know what really happened but I ended up on the table in the room and they let me get oriented again. The cardio at that point said "you're a real trooper" and told me that it was a spectacular test. ??????? He muttered some things about the heart rate doing exactly what it should but the BP having an abnormal response. Mind you, I was still dizzy and as dumb as a box of rocks at this point. My brain turns to mush when I feel like that and I have a difficult time forming words let alone complete thoughts. After the cardio left, I asked the EKG guy "what did he just say" and he told me that my heart rate increases like it is supposed to but then my BP drops. He also told me to expect a call very soon from the cardio.
I know this doesn't sound like I have much news but I feel better now because it happened in front of the cardio instead of me trying to explain it to him. Somehow it seems a relief to me that he got to see it for himself as opposed to him trying to figure out what I was trying to explain to him.
Sorry I am rambling. I am not quite back to normal. Thanks to one and all for all your support through this.
Lori

 

[BillCobit]

"...yeah, and you're a real *******"

"...yeah, and you're a real *******"

Lori -

The cardio at that point said "you're a real trooper"

Is this the same cardio that has been attributing your serious symptoms to "hypochondriac chick syndrome?"

I know what MY retort wouldda be if I'd been in that situation! I can think of exactly the right 7-letter substitute I'd have used for "trooper." Not that that would have done anything positive for the clinician/patient relationship...and would probably have left me w/o a doctor at a time when I needed one most...but I don't think I could have resisted the urge.

I can only imagine how frustrating/enraging your experience has been.

I hope you now get the attention you desereve -- preferably from someone else who will take you seriously and understands cardiology better than this other jerk. I think a lot of doctors who act like yours just arent' that good at it. They have enormous egos and limited knowledge. If the encounter a patient complaint they don't understand, the logic goes like this:

"Hmmmm, let's see:

1) I'm omniscient
2) I've never heard of anything like this before
3) She must be fulla crap!"

I hope you are now able to get your situation under control. Depending on your health insurance situation, maybe you can get a referral to one of the big heart centers?

Good luck to you, Lori. Please keep us posted.

 

[Mary]

Lori,
You GO girl!
I've had several episodes at school but always deal with it on my own, and then tell the cardiologist about it later. Last week, I put in writing for the school nurse, that if she was called because I was having trouble, that I was authorizing her to send me to the Emergency Room with no discussion from me or anyone else.
It seems that you have to be in a medical facility to be taken seriously. I hate that you had to put yourself through the process, but I applaud your determination in doing it.
Mary

 

[Karlynn]

You know life is getting strange when you are happy you can actually demonstrate that you feel like crap in front of a doctor. It's like having a car that stalls out all the time and the mechanic telling you "Gee, never happened for me." You feel so vindicated when if finally happens in front of them. "See! I'm not nuts, but my health is making me nuts! And doctors are making me nuts, but I'm not nuts!"

The dig will help you with your heart rhythm, but it is also a blood pressure med, so will lower it. (Which I'm sure you already knew.) I have that same issue. My BP is normally low to begin with and the Toprol I take for my rhythm and HR lowers it more. Get up slowly from bed or a chair and stand for a moment before moving. If you are out somewhere and start to feel light headed, just sit down right there. I did that at KMart once. Kind of interesting.

Here's hoping you get some solid answers and , most importantly, solid solutions.

 

[tobagotwo]

This might seem harsh, so if you don't like strong opinions, best to leave it unread...

I'm no fan of doctors who think they're omniscient, and wave off their patients' observations with patronizing remarks. No one understands how your body works and feels like you do. Despite portions of the medical community's extreme attempts to reduce everything to formulas, there is no one-size-fits-all in medicine. Even antibiotics work differently in different people. This should be the most immediately and painfully obvious observation to anyone in the medical profession.

I am absolutely certain I'd have leveled some seriously sarcastic remarks at him, with intent to mortally embarrass. "You're a real trooper" is patronizing, as if he were an adult in charge of approving of your actions. What he should have said was that he was so sorry he put you through that, and that it never should have happened. It's too bad such a critical profession grows such self-inflated morons in its midst. That you had to go through this absolutely steams me. Fortunately, they're not all like that.

Unless you really feel that he has smartened up, my feeling is that as soon as you feel capable, you should find a more reasonable cardiologist. I do recognize that cardio-shopping is a tedious and difficult task. Don't worry about this one already understanding your condition, because his big head is apparently blocking his view of it anyway. If he asks why you're moving on, just say that you feel you need a cardiologist who will listen to what you have to say without requiring you to risk your life to prove it. Let him stew about it a little. He needs to reassess his approach.

Perhaps others will feel my response is too harsh, but I feel there isn't enough time in this life to deal with people who just don't get it. Maybe losing a patient under embarrassing circumstances might make him a better doctor for the next person.

 

[Nancy]

I give you a lot of credit for continuing the test in spite of how you were feeling. It must have been terribly frightening for you. I believe most people would have stopped the test at the first sign of problems.

I hope that this test will give the necessary answers so you can finally get the help that you need.

Take care.

 

[bvdr]

Lorisue,

I do know what you mean. It seems strange but the first time I went into the ER with an extremely rapid irregular heartbeat and told the triage nurse that I believed I was in rapid atrial fib, which was proved true on the monitor just a moment later, I felt relieved rather than upset.

By the way....I couldn't find the medical term we were trying to remember on chat last week, did you?

 

[strawberry]

Lori Sue, I know just what you mean. I told my doctor on and off about palpitatons and it was blown off. I was having numerous very prominent ones this past winter I just blew off. I went to the GI doctor who said do you know you have an extra heartbeat? I was soooo relieved. Someone heard it and I hadn't even mentioned it. The cardio didn't hear anything (the next week) and kind of smiled patronizingly and said we'll get an echo just in case. Then he must have barely looked at it cause he said it's just fine, took a phone call came back and said well you do have an MVP but no regurg so it's fine oh wait you have mild AI you have to take anti's and come back in a year. No discussion, nothing about what to expect in the future.

I also have a rib that springs forward out of place when I move the wrong way. I actually had to make it do this for the GP so he wouldn't think I was being nutty. It's excrutiating too. Keep plugging away!

 

[Abbanabba]

Hey LoriSue,

It really is a sad state of affairs when you have to take such extreme measures to be taken seriously..... but then let's hope the scare you gave your cardio makes him wake up a little!!!

I certainly know the frustration you are feeling right now and hope you start getting some answers SOON!!!! It really sucks when you feel so bad and no-one seems to be able to tell you why.

Hang in there and keep us posted on how you're doing.

Sending positive thoughts your way.....

Anna : )

 

[KimC]

Bob H.,

It's great to have you in our community. I don't think your words are too harsh.

My experience w/ my first cardio was similar to Lorie Sue's. He kept saying that I should be tolerating the AI well, i.e., having no symptoms, and that he had a marathon runner w/ severe AI who was as healthy as a horse. He treated me like a wayward daughter.

I appreciated his reassurring, fatherly approach until my chest pain grew worse. My family kept reassuring me, saying that the chest pain was GI-related or something else.

I knew -- and only the person experiencing the symptoms will know -- that something was wrong, and went to the ER of a major hospital center for an evaluation of the chest pain.

The cardiac MRI I had at rest in Oct. didn't reveal any perfusion defects. Only the nuclear stress test done while I was hospitalized revealed ischemia or mild perfusion defects. The doctors on staff, as I've said in previous posts, attributed it to breast attenuation but recommended closer monitoring and medication.

After that experience, I sought an opinion from the Cleveland Clinic. First, they determined that I had a four-leaflet aortic valve. Second, they said that the chest pain was probably due to coronary vasospasms and that a cath was indicated, if I continued to experience the spasms which I have.

I seem to live in a community where women have substandard cardiac care. We have a rural hospital run by Tenet, which overcharges for procedures. The main cardiologist on staff -- the guy who has been around the longest -- earned his M.D. at Grenada Univ. He's also a drunk, and has had numerous DUI's and has actually shown up on call drunk, according to a Harvard educated, retired Univ. of Penn. prof. who needed a stent here on the island and asked around about who's the best cardio.

The cardio's reportedly a compassionate man who earns the trust and love of his elderly patients. I guess if I were 85 and suffering with a terminal illness, I'd want such a cardio.

But I'm not. I have a long life to live with small children who need me and I no longer care who I offend if I'm not satisfied with the care I receive.

Lorie Sue, you have to be a warrior about your heart care. Keep pressing for answers, and seek the best cardio in your region if you can afford to.

Best,

 

[LoriSue]

Bill: I had quite a few retorts in mind at the time but my brain just wouldn't seem to work right to get the words out. At one point in the test the cardio pulled up a chair and put his feet up and said "this is exhausting".....I told him that was evil. I was assuming that his comment was an attempt at humor. I did think it was kind of funny at the time. I also thought it would have been funnier if it was him on the treadmill and me in the chair. Oh well.

Bob H: I don't think your words are harsh at all! I completely agree with you.

Karlynn: The car and mechanic analogy was exactly right. You summed it up in a nutshell. The digitalis does help with heart rhythm but it also helps to increase my blood pressure during "normal circumstances" (not necessarily during stress). The reason it helps raise my BP during normal routine is because the dig slows the frequency of contraction and increases the force of contraction. The reason this helps me is because the ventricles will have a longer period of time to fill before the next contraction. This allows for a greater cardic output for me. Without the dig, the rate of contraction is too rapid for an adequate amount of blood to fill before the next contraction begins. Does that make sense to you? Did I explain it good enough?

Nancy: I don't remember feeling scared.....what I remember is feeling stubborn and determined that I wasn't walking out of there without a test that was usable. I was tired of all this testing and was determined to not have to do it over again because I stopped before my heart rate hit 150. I feel dizzy and bad when my heart rate was 97 and so I just hang on to the bar and went for it. I actually went for about a minute and a half (so they tell me) after my heart rate hit 150. I don't remember what the final number was. I knew if I had to reschedule this test that this whole ordeal will just drag on and on and on. I want to make sure that I am in good shape for our wedding on June 19th and our honeymoon. We are going to fly to the Bahamas and spend a week down there before flying home. We decided we will take some more time in August and go on another vacation. I like that idea....I get two relaxing honeymoons 8 weeks apart!

Betty: I totally forgot about the "medical term" we were talking about on chat. I will do that as soon as I post this.

KimC: I have definitively taken a warrior approach to my medical treatment. It feels good.....I feel empowered!

 

[Harpoon]

"I also thought it would have been funnier if it was him on the treadmill and me in the chair."


SOmewhere along the way, I think in another message thread here, I said something about how I felt all doctors and nurses should be administered the tests and proceedures they perform at least once during their training, whenever possible....


This includes all "breeds" of stress tests...



In some sense, I think I understand the logic of needing to get yoru heart rate up to a certain point in oder for the test to be accurate, however it kind of boggles my mind that they intentionally did that to me given that a month later I nearly died in the operating room during an emergency valve replacement....


Oh well, I guess since I'm still here, it's ok.



You're pushing hard to get answers and you should be commended for that. Bravo! Too bad the docs aren't paying as much attention as maybe they should, but at least you're getting somewhere with their bullheadedness!!!


Keep it up.

 

[McCln]

Lon

Lon

Sounds like your cardio is bit freaky. If my cardio acted like that, I would have dropped him like a hot potato, and begun looking for another cardio. He should have listened to you and your symptoms. I wish luck on the results and good luck with the cardio. You should have been treated better, but as long as things gets checked. Take care and good luck.

Caroline
09-13-01
Aortic valve replacement
St. Jude's valve

 

[tobagotwo]

Kim C, I absolutely love that imagery, that you need to be "a warrior" about your heart care. I think most recupes can identify with that, or at least whistfully turn it over in thier minds. I yield to thee and LoriSue as Xena-class Heart Warriors.

This is most particularly and critically true for women. Most cardios are men, and unfortunately subject to the casually brutal dismissive attitude that men sociologically seem to adopt about women and physical complaints. How handy that we men, not sharing some of the more uncomfortable aspects of being female, can conveniently relegate them to hysterical handwringing. And by extension, we can pretty much ignore any other observations they make about their health that may make things more complicated for us.

The fact that cardios tend toward the egocentric (this is not mostly a bad thing - it helps drive them to excel) tends to aggravate that fault. Women must be especially vigilant that their reports are being carefully reviewed, and that their insights into their condition are being integrated into their treatment plans.

For many women, there is also conflict with the "inner negotiator/peacemaker." This is partly why women often make such great victims. Women are sociologically charged to mediate their responses and maintain some form of open communications with those they deal with, even when it has not been a largely beneficial relationship.

When a man gets fed up, one of his options is to loose a couple of apt epithets, flip off the transgressor, and stalk out of the office forever, displaying his plumage. Picture a woman doing this, and you may find that it somehow doesn't make an appropriate image in your mind. Well, think about it again. It should be totally appropriate. An idiot is an idiot, whether it is a man or a woman who has dealt with him.

Of course, much of empowerment has nothing to do with dealing with the negative. Knowing that you exert some control over your treatment (and thus your fate) has to improve your outlook toward it. We all feel better when we get to steer a little, especially when the sled sometimes goes very fast.

Bless those who help others, but also help themselves. Knowledge is power.

 

[Dee]

Lori,

I was so glad to see your post, I've been wondering where you were....now I know that you were passing out on treadmills I'm so sorry to hear that you're still going through the Doctors that won't listen to you crap!! You seem to be having bad luck with finding the right Dr. Are there any out there in Oregon? I'm proud of you for sticking to your guns and your perserverance on this. You have a lot of knowledge, so you have that on your side. There is a Dr. out there that is more than willing to listen and help you through this instead of humiliate you! Don't stick with a Dr. because you would feel bad if you left him. If you're not comfortable with the care you're getting, by all means start looking for a new one. This is YOUR health and this is a big issue, it's not just like a sore throat or something. You have to be your on advicate and take care of YOU. Your Dr. will be just fine, moving on to the next new patient he can humiliate!!

Stay strong and do what your heart's telling you too (no pun intended). Don't give up on finding a good Cardio, they are out there and you deserve it. Please keep us up to date on everything. When you're not posting I worry that something is wrong. Hang in there girl!!

~DeeDee~