Breathlessness

Hello my kindred spirits. I'm desperate for advice if possible. I had my PM and defib fitted urgently On 1 October 2010 after VT block due to long QT Syndrome (I hadn't known I had this) and my heart stopped in resus.

I returned to work on 4 January but I'm devastated at the breathlessness I'm still experiencing. I'm a personal assistant to a consultant (I love my job) but I can't walk more than a few feet without stopping and gasping for breath. I've spoken to my cardiologist (my PM is set at 70 bpm) and he seemed unconcerned. I've also spoken to my GP but I'm
not getting any support. My PM has been checked and is said to be working perfectly. All well and good
but is this as good as it gets?

I walked everywhere before my op and was fit and healthy so to not be able to walk anywhere again fills me with dread. I thank God every day I'm alive but I can't imagine living life always gasping for breath when I've hardly walked anywhere.

Any advice would be gratefully received as I'm in constant tears of frustration.

Love and laughter to you all and may God bless you all
poppy x x

15 Comments

Gosh, you sound like I did before my

by janetinak - 2011-01-21 05:01:17

PM put in for Afib. I guess I would ask for a referral (if needed) to see a Pulmonologist (breathing specialist). At least then you coulld have your lungs & respiratory system checked out & make sure that is not the source of your breathing problems. I did that prior to PM & the breathing dr knew my cardio & said tell Dr ... to get you out of fib. He was saying that also. But my coworkers suggested the breathing dr & at least I knew to go on an get my PM which my dr said was & option. In your case, then you go back to your dr's & insist on a fix.

Hope that helps

Breathlessness

by drashmore - 2011-01-21 05:01:36

Are you on any medication? I was having that problem and they pulled me off my BP meds. It's totally disappeared. My bottom number of my BP was going down in the 40's.

Thank you

by Poppy - 2011-01-21 06:01:17

Thank you all so so much, especially agelbert. I will certainly see if I can get a referral to a pulmonologist. I am not on any medication except 2.5mg of ramipril. It certainly does feel as though my body is oxygen starved. It makes me constantly feel nauseous and light headed.
Thank you all again so much. I never ever feel like I'm on my own with you guys around.
Lots of love xx

breathlessness

by agelbert - 2011-01-21 06:01:18

Hi Poppy,
I'm sorry to hear you are experiencing discomfort from your breathlessness.
Remember that the rate of your breathing is an autonomic response. It is triggered by body chemistry and normally not voluntary. Of course you can voluntarily decrease or increase breathing rate for short periods but I assume your difficulty has to do with an autonomic response. Your HR is set by your PM but your body is somehow sensing the level of oxygen isn't exactly what it wants so it triggers the extra breathing demand. The whole thing normaly is a balance between the PH level in the blood stream needed for the enzymes in there to function properly. You have heard of acidosis and its' opposite, alkalosis. These conditions can be triggered by rapid breathing from anxiety (not oxygen demand) or being in an oxygen poor environment. The afferent (sensing portion) of your autonomic nervous system detects a certain PH level and the efferent (motor portion) sends the 'breath faster' command.
Your doctor doesn't want your HR any higher that absolutely necessary. The higher they set it, the more the PM is acting on your heart which reduces battery longevity and doesn't translate into improving your heart. Consequently, it will be hard to convince the doctor to increase your rate.
If you have a rate response PM, the temporary rise might be adjusted up. If you don't, you may have to try to convince your autonomic system somehow that your oxygen uptake is okay. Can you get the doctor to monitor dissolved oxygen levels during a stress test?
Finally, remember that your body will respond to this increasing breathlessness with some automatic (grow more capillary connections between blood vessels) attempt to increase oxygen uptake. That is a complicated subject and everyone is different but that may be why the doctor is adopting a wait and see attitude.
Hopefully, the doctor is not making the mistake of thinking your breathlessness is anxiety produced breathing. If I were you, I would clear that up with him to make sure he doesn't think it is 'all in your head'.
Looking up the breathing rate response of the autonomic nervous system will help you cope with your condition.
I hope this helps.

Omg

by Poppy - 2011-01-21 07:01:05

Drashmore thank you that's exactly my symptoms. I'm not going to take my meds tomorrow and see how I feel. I will also monitor my blood pressue which I know is on the low side, which all the medics are saying is really good! How can it be good when I can't breathe :-(
I will let you know how things work out. I'm keeping my fingers crossed very tightly xx

Breathlessness

by drashmore - 2011-01-21 07:01:09

I'm not a doctor but Ramipril is a ACE inhibitor. I was on Prinivil, which is also a ACE inhibitor. I started noticing I couldn't bend over and take clothes out of the dryer without feeling like I couldn't breathe. I started checking my BP. One night I went to Krogers and checked it when I started feeling bad. It was 123/52. The next day I went with my sister to Walmart and started getting short winded. We checked my BP and it had dropped to 133/42. I couldn't breath. I felt like I had someone sitting on my chest. I also had a dry hacky cough. After I had a few of these incidents I called my doctor and told him what I was doing and my readings and he stopped my meds. When I went in for my check up the following Tues I had my BP documented for a few weeks and they agreed to leave me off of the med and monitor me. The medicine just wasn't working for me.

Have you checked you BP when you have these issues? Once they took me off the med things turned around within 4 days. I walked 1.5 miles today on the Wii and didn't have any problems. My BP is staying around 132/75. I feel like a totally different person. I'm even thinking about going back to work.

I didnt' know whether it was my heart or the PM that giving me a problem.

Hope you get some answers.

Omg

by drashmore - 2011-01-21 07:01:25

It took me from a Wed to a Sat for things to start easing up. The internet said it could take up to a week but all mine just stopped after 4 days. My sister and I went to Kroger on Sat and walked around then went over and took my BP. I know people thought we were nuts because we high 5'd each other when it was 132/78.

When I went to my Dr on Tues he told me he wasn't saying I was never going to be on BP medicine but for now he would leave me off of it. I have to record my BP 3 times a week and go back in 4 weeks.

It's scary, you don't know what's going on and you're thinking all kinds of weird things. Just be sure and check your BP and maybe things will get better. I can't believe how much things have turned around for me just by getting off the meds.

Best of luck and let me know how you feel. Drop me a note.

Thanks again

by Poppy - 2011-01-21 07:01:52

The symptoms did indeed manifest themselves after my PM was fitted. I thought the breathlessness would improve over time but this has not been the case unfortunately.
I think you're right in being aggressive with the cardiologist but I get the impression he thinks I'm being silly. I've been positive from day one and am trying to live my life to the full, but when I can't even cook without gasping for breath, this is having a massive effect on my life. I'm thinking I'm going to have to stop working as my colleagues are very frightened when I arrive at work and can only manage a couple of steps at a time. They are trying to keep their distance from me as I know they think I'm going to collapse at any time, which is what it looks like of course.
I can't get an appontment to see the cardiologist until 4 May, if you can believe that, so God only knows how I'm going to cope until then.

Low BP

by agelbert - 2011-01-21 11:01:14

Poppy,
You are welcome. We are just trying to help each other here. For example, the explanation of PM syndrome just given by Cabg Patch helped me to understand what it is and what goes on in the heart when sombody has it.

At any rate, I wanted to add that, as Drashmore said, low BP definitely causes shortness of breath. Your medication Ramipril functions by lowering levels of angiotensin II which lowers BP. So stopping or reducing the dosage might clear up your problem with dyspnea (shortness of breath). You definitely do not want your BP to be too low for a host of reasons in addition to low oxygen uptake.

If you feel the symptoms only when you stand up from a sitting position (orthostatic hypotension) you might also look into special types of socks or support hose for your legs. They help the veins push the blood up towards your heart.
You should not have to stop working because of this. I hope you resolve your problems soon. When you get better you can (jokingly) tell your co-workers to stay clear because you feel so great you might do a handspring just for fun. That could shock them back to behaving normally. Society can sometimes be way too quick to relegate us to the 'invalid' category.
God Bless you

A lot of good ideas, BUT

by ElectricFrank - 2011-01-21 11:01:55

The suggestions above are mostly right on as far as possible causes, BUT the real issue is your cardiologist. At least from your description he/she is being pretty cavalier about a condition that is not normal and could be serious. This isn't going to just get better with time. I'm hearing this used more and more as an excuse for incompetent medical care.

I suggest that you find another cardiologist for a second opinion right away.

frank

Me too!

by #1grandma - 2011-01-22 01:01:57



I too am happy with my health insurance and I don't want ANYONE messing with it!! All the thousands of dollars that my surgery has cost and I only had to pay $50.00! Please leave it alone!

Sally

Low BP

by Poppy - 2011-01-22 05:01:05

Thanks again everyone from the bottom of my battery powered heart! I am not going to take my meds today and my husband is going to buy a BP machine so I can keep checking it. I know my cardiologist is taking a very cavalier attitude (which is polite!) I know he saved my life quite literally and that he's a fantastic surgeon but he doesn't have any people skills unfortunately.I get the feeling he thinks I'm 'just getting used to my PM' and that I'm a silly female - which couldnt be further from the truth - but unfortunately in the UK we are allocated a surgeon/consultant and can ask for a second opinion but that's when you're then treated as a troublemaker. The only option is to pay privately to see someone out if area which we are prepared to do as I certainly can't wait until 4 May for my 'urgent' appointment. My GP has even written to him asking if I can be seen as a matter of urgency and to his credit he's replied to her but the 4th May was the best he could come up with!!!!
Once I do get well again I am going to tell my colleagues that I will be doing some celebrating by doing some gymnastics ( goodness, I wish :-() and as you say that will teach them to treat us 'special ones' as invalids.
I will keep you posted as to what happens regarding BP etc.
Lots of love <3 xxx
but

The more I read your stories about

by walkerd - 2011-01-22 07:01:41

health care overseas I pray to god that the USA doesnt let Mr. Obamas health plan get thru, it would be the start of regulated medicine. I for one am happy with the health care I recieve and couldnt imagine going thru what some of you go thru in our friends overseas, when I had my heart condition begin in July of 08 and was told I couldnt get into see a cardio doc for a month or two because I was a new patient and my family doctor wasnt being persistent enough at the time and if we had the practices of what I read about overseas, I honestly wouldnt be here typeing this right now.
I would like Frank said somehow find another opinion from another cardio doc. Good luck poppy my prayers and thoughts are with you.
dave

Insurance

by Poppy - 2011-01-23 06:01:41

Hi folks. We do actually pay National insurance here in the UK for our 'dead on it's feet' National Health Service which is taken out of our salary on a pro rata basis. However due to the amount of unemployed in this once Great Britain the NHS is struggling to cope. I would welcome the advent of medical insurance but if I pay privately now I will probably end up with the NHS consultant I have a gripe against!!!! No win situation really.
Keep the faith in Obama as our treacherous Prime Minister said he wouldn't cut health workers but that's what he's gone and done!
I feel no medical staff are taking me seriously and I'm now feeling very depressed with my situation when I should be feeling so well by now.
Love to you all <3 x x

Health Insurance

by ElectricFrank - 2011-01-23 12:01:53

Having Medicare plus a supplement through my teaching job before I retired I too am happy with my health insurance. However, I'm not sure its fair for those of us that are so fortunate to dump those who aren't. I sure don't know the answer. My feeling is that whichever way we go the insurance industry will be the only one to come out on top. And when those who don't pay for insurance have a loved one develop cancer, they will be all over TV tugging at our emotions to pay for the treatment, and we don't have the guts to tell them they made there choice.

The real problem is people. I'm glad I'm not a people! LOL

frank

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