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jfkimberly
15th September 2007, 12:57 AM
I have congenital scoliosis (*pokes siggy*), and with it I only have one kidney and mitral valve prolapse with regurgitation. So far as I know, my kidney is fine. However, I get my heart checked annually to see how it's doing. Today was my checkup, and I'm not sure what to think. *fret*

1. The regurgitation was classed "mild-to-moderate" last time, but he said "moderate" today. I asked if it was worse, and he said there was more regurgitation. This means that there is a marginal increase in the amount of blood that is back-flowing through the valve when it should be closed. He didn't seem terribly concerned with the change.

2. On the other hand, there is no sign of damage to my heart. No thickening of the walls, no injury to the muscle, no enlargement of my heart generally.

3. However, my blood pressure is/was extremely low. On sitting, it was 96/58 (not too bad). On standing, it was 74/40-something (pretty low).

4. My pulse was 120-something. It was high on Tuesday for my pulmonology checkup, as well. But my BP was 110/86 then, which is more normal.

He said something about not wanting to adjust my medication, and I said I wasn't taking any... he seemed surprised. But then said, "Well, we can't give you a beta blocker to lower your heart rate because your blood pressure is already too low..." I don't know what to think! I asked if there was something I could do to improve my blood pressure, and he said I could eat more salt. !!!

*frump* I don't know how I'm doing. Subjectively, I feel fine. But because of my reduced lung capacity, I'm always short of breath, so I wouldn't know if I was *more* short of breath.

nutmeg
15th September 2007, 04:33 AM
I wonder if your fast pulse was just a result of being in a potentially stressful situation. Doctors have often commented that my pulse is fast when they check my blood pressure, but when I measure my BP with one of those monitors designed for home use my pulse is usually between 80 and 90.

jfkimberly
15th September 2007, 05:14 AM
No, my pulse is always high. It was higher today and on Tuesday than prior measures. I've never found doctor visits to be stressful, but even if I did, prior checks would have also been high if that's the cause.

GillyG
15th September 2007, 02:53 PM
Just out of interest, I also have a rapid (and often fluctuating) pulse rate, as do quite a few others on here - we had a thread about it once. My BP has always been fine (for my age!), it's just my heart that races.

I'm sorry to hear that things seem a bit worse re your regurgitating valve. Is there nothing they can do for that?

Good news that your heart is healthy though - especially since you often make a reference to 'siggy's' - naughty Kimberley! :P

Hope you feel a bit brighter soon.

Gilly xx

jfkimberly
15th September 2007, 05:17 PM
Gilly! I would never! "Siggy", not "ciggy"! Siggy = my signature. It's a shorthand I borrowed from an online game site. Can you imagine smoking with 25% lung capacity?

Amazed Jean
15th September 2007, 05:24 PM
I cannot imagine smoking at all but I'm glad someone finally asked you about "siggy". I thought it was either cigarettes or a imaginary friend. LOL
I also know people who have been on oxygen and still smoke. Even after being diagnosed with lung cancer and another diagnosed with emphasema and being on oxygen and complaining about the cost of oxygen my soon to be ex son in law's grandmother was smoking a pack a day !

jfkimberly
15th September 2007, 05:28 PM
Originally posted by Amazed Jean@Sep 15 2007, 11:24 AM
I also know people who have been on oxygen and still smoke. Even after being diagnosed with lung cancer and another diagnosed with emphasema and being on oxygen and complaining about the cost of oxygen my soon to be ex son in law's grandmother was smoking a pack a day !
That's ridiculous. I have an oxygen generator machine in my room, and when it was issued to me by my medical equipment supplier, they gave us signs to post at the front door that say "No Smoking - Oxygen In Use"... it's very dangerous, as oxygen is explosive. Not to mention the severe health risks of smoking. *disgust*

Amazed Jean
15th September 2007, 05:32 PM
Kim, I have no idea why we are gifted with mitral valve prolapse and you have reminded me that it's been a long time since I had mine checked. I also don't relish going in though - they always tell me my heart rate is like a bird's. Fast and shallow. My blood pressure is elevated "a bit." I finally said to tell me when they get worried so I can worry too. In the meantime I am trying to give other people high blood pressure. A short aside - I was on blood pressure medication for about a year but mine kept dipping so low that they couldn't get the doseage right. I think it was the grapefruit I eat everyday and they agreed so I am back to slightly elevated status.

GillyG
15th September 2007, 06:19 PM
Originally posted by jfkimberly@Sep 15 2007, 04:17 PM
Gilly! I would never! "Siggy", not "ciggy"! Siggy = my signature. It's a shorthand I borrowed from an online game site. Can you imagine smoking with 25% lung capacity?
Phew!! Am I glad to hear that!!

Sorry, my mistake, I'm a bit old for all this trendy-speak you know! :P

Incidentally, my Dad died at 49 with lung cancer, (used to smoke non filter-tipped cigs), my Mum died at 67 of Chronic Obstructive Airways Disease, (complicated by emphysema caused by smoking), and my Father-in-law lived to be 80 but finally died of lung cancer and the last thing he did was light up!!!

So I guess you could say I'm a bit anti-smoking myself! ;-)

Gilly xx

RocketQueen
17th September 2007, 07:12 PM
Hey Kimberly.

Emily here, scoliosis and Tetrology Of Fallot Baby. I have a leaky valve too. I don't know which one it is exactly, I try not too think about it. They did the ole treadmill and breathing test with me 2 months ago but I had to miss my check up as I had just started a new job.
I am going back Jan 31st to hear what they have to say. Sucks don't it?
I always feel like Heart doctors are never straight with you, I actually hate them, all of them, but I think thats just issues I carry from when I was young and spent 6 years in and out of hospital before I had the full correction.
I added you on msn by the way. Hope you don't mind.
I know how u feel when they tell you these things they usally say "It's not really anything to worry about at the moment" But then ur like "When should I worry? and well if it;s nothing to worry about why are you doing tests etc"?

Ugh! Rant over. Hope you sort it out. x

jfkimberly
18th September 2007, 04:23 AM
Exactly, Emily! EXACTLY! I have done enough research that I know what they're looking for, and I know the significance of their questions. But if I wasn't informed, I could come away from my appointments thinking that I'm just spinning my wheels going back for checkup every year. Stupids.

RocketQueen
18th September 2007, 06:43 PM
Lol! Nice to find someone who knows what I mean when I slag off heart doctors. Anyways, i'll talk more to u on msn sometime I am sure.

x

ELLA22
20th September 2007, 07:11 AM
Sorry to hear your results are not as good :( . I know what you mean about heart doctors! Cerys has a heart murmur and has had a big checkup, when they did the ecg, it printed out with possible problem. The doctor looked and said she was fine! We have to be checked every so often as my mum has a rare heart condition which can be passed on. The doctor said there is no way Cerys has it when even I know that it rarely shown on an ecg until teen years!!
I hope that you're feeling ok about everything. Have you got to go back soon for a follow up?
Love Ella x

jfkimberly
20th September 2007, 06:13 PM
Emily, thank you for mentioning your heart defect. I had heard the term before, but wasn't sure what it was, so I just looked it up. And in doing so, I accidentally came across the exact blurb of information I was looking for regarding my own health and potential risk if I were to try to have a baby. I found the information to be encouraging, and... well... thank you. I know it was a series of coincidences that got me to the page, but your post triggered that series of clicks.

Ella, I go back annually. But this time, it seemed my cardiologist hesitated a bit longer than usual before telling me when to come back... as if he considered a shorter time between appointments. I doubt he was considering a longer time.