no rant, just praise - for a change

[lynnconnolly]

Hi all, as I usually post angry rants about my doctors, I thought I'd let you know that I can appreciate the medical profession I went to my gp, Dr Collins, this morning because since I had my stress test last week, I've been feeling progressively worse. More sob, heart beating hard, swelling around my ribs and dizziness... anyway, he didn't faff about and prevaricate, he just gave me furosemide again (my cardio had taken me off it and wouldn't listen that I don't get swollen ankles, just swelling around my ribs so he took me off the furosemide)

Dr Collins showed me the letter he'd had from my cardio about having taken me off the dieuretic as I wasn't congesting any longer - based on my having no ankle swelling - but the gp said that he's quite happy to base his clinical decisions on what I'm saying rather than what should be textbook indications. What a breath of fresh air that man is! He renews my faith in medical personnel every time I see him.

So, with luck, I'll now lose this half a stone I've put on rather rapidly

Thanks to all for your help and advice through my previous ranty posts!

Lynn

 

[Ross]

But your beautiful when you rant.

 

[lynnconnolly]

But your beautiful when you rant.

marry me

 

[upchurch131]

marry me

Who said you can't find love on a valve replacement forum????

 

[Karlynn]

marry me

You are asking for trouble!!!! You gave him an opening.

God bless your GP! I had 3 doctors get all confused because I wasn't "text book". That's why I don't have a lot of patience for those that tell me "Well, you shouldn't be feeling that way because......blah blah blah." I'll just swim on over - we can go have some tea and rant together!!!

 

[marie]

I'm so happy to hear that. Take care of yourself and it's Ok to rant once in awhile. I do it and sometimes I can not even make sense.

 

[EireCara]

Thats great news Lynn, its makes such a difference when one has a positive outcome with the medical 'people'.

I just wondered would you explain the swelling around your ribs as apposed to your ankes...never heard of that. My ankes are puffy, but beause they dont look like ''CANKLES'' im told ''they are fine.

 

[ctyguy]

Glad to hear that you had a POSITIVE experience for a change ! Nice to hear that a doc is actually going to listen to the patient rather then tell the patient what they should/shouldn't be feeling. When I had my bout of pericardial effussion I went to the ER and the doctor told me is was simply a muscle cramp, gave me a scrib for Vicodin and sent me on my way. I went to my cardiologist's office the next day and they gave me the proper diagnosis and treatment. What really irked me about that whole incident is that the ER doc saw the xray and saw that there was more fluid around my heart than there should have been. So I just have to assume he was/is a dumb*ss and didn't diagnose my issues properly because of his lack of skills.

 

[pamela]

One symptom of early CHF can manifest as abdominal fluid build up.

Lynn, I'm glad you have at least one professional on your team. I can't believe a cardiologist wouldn't recognize the fluid in your tummy area as a problem even without lower extremity edema.

Start writing letters to the licensing body that regulates docs in the UK.

Take Heart, someone is listening after all,
Pamela

 

[lynnconnolly]

Thank you everyone for taking the time to post... especially that dude who called me beautiful Teeheee. But really, thanks for replying. It is indeed a rare day that a doctor shows good old common sense and listens to what IS happening rather than what should or should not be.

Ctyguy, the world seems to be full of those dumba** doctors who can stare like a slack jawed inbred at an xray 'til sundown and they wouldn't see what's staring back at them. Thank God you found one who knew what he was seeing!

Jacqui, even when I had a very lot of fluid around my heart and lungs, my ankles never became even a little bit swollen. Apparently, swollen ankles is *the* definitive thing for diagnosing congestive heart failure. As I say, it's never happened to me - I just put on weight and develop a 'spare tyre' that would appear to be flab around my ribs but is in fact fluid. It goes on rapidly and makes putting socks on a nightmare! Last time, I had IV furosemide and it went like magic over the course of those first days and then weeks when I was on the tablet form. My ribs went back to being ribs, not Kevlar-like rib padding.

Karlynn... the kettle's on and upchurch, Ross can put together my broken heart anytime Pamela and Marie, thank you for your kind comments. Hope you are doing ok at the moment too.

 

[Dawn-Marie]

Wow, finally a doctor who listens...so happy for you that you have a doctor like that. They are few and far between. With all the doctors i've had in the past (and now) i haven't had a one who will listen to me (but don't you know i'm a woman and disabled so, therefore, i'm stupid, lol). Sounds like your doctor's a keeper!!

 

[lynnconnolly]

Wow, finally a doctor who listens...so happy for you that you have a doctor like that. They are few and far between. With all the doctors i've had in the past (and now) i haven't had a one who will listen to me (but don't you know i'm a woman and disabled so, therefore, i'm stupid, lol). Sounds like your doctor's a keeper!!

Thanks Dawn-Marie, he is great it has to be said I'm sorry yours have treated you badly - if they've underestimated you, they're dorks and I bet they've regretted it!

 

[WendyD]

Hi Lynn
Glad to hear that you are feeling better and happier with your Doc's advice.
Best Wishes
Wendy

 

[tobagotwo]

Quick ankle check and pass her on, eh..?

It surprises me that a cardiologist would not also look for ascites, with this type of patient complaints. It's a fairly common condition associated with heart failure, in which your abdomen takes on a load of excess fluid. This excess fluid can cause problems with internal organs, and is often difficult to dislodge, even with diuretics.

There is an alternative treatment for this called aquapheresis, in which water and sodium are filtered from the blood. It's considered much more effective, faster, less chemically disturbing to the body, and certainly longer-lasting than diuretics, especially once they begin to lose their effectiveness. You may not be covered for it, as it requires hospital time to filter the blood, but it's good to know it's there as a backup, if the diuretics can't cut the mustard.

The expert on fluid retention is Nancy. Most of what I've learned about it came from or at least started with things that Nancy has explained over the years.

Best wishes,

 

[Ross]

You are asking for trouble!!!! You gave him an opening.

God bless your GP! I had 3 doctors get all confused because I wasn't "text book". That's why I don't have a lot of patience for those that tell me "Well, you shouldn't be feeling that way because......blah blah blah." I'll just swim on over - we can go have some tea and rant together!!!

She knows already, your late.

 

[Nancy]

Joe had CHF for years and years. He had really skinny legs and ankles, so even when he had fluid there, it just looked normal, but I could tell.

He got ascites (abdominal CHF) more often than he got it in his extremeties, so when it finally arrived in his ankles and legs, it was at a bad stage.

Yes, he had the dumbo doctors who just didn't think he had CHF--until they ran a BNP test, then it was clear. We got rid of them.

The most important thing you can do for yourself is to get a baseline weight. Weigh yourself when you are feeling very well, and feel fluid free. That will be your baseline. Even ascites will show up as sudden weight gain. Another thing you can do is to get a tapemeasure and take a girth at the same time. That will be your baseline girth. Ascites will show up as girth expansion. You can also do the same for your ankles and legs.

It is almost impossible to put on a lot of weight all at once from overeating and poor diet, that takes time. So when you gain suddenly, think fluid, not fat.

Keep your diet low in sodium!!!!!!!

This was THE most important thing I did with Joe regarding his CHF. I kept a daily diary. He weighed himself every day w/o clothing first thing in the morning after voiding.

I took his bloodpressure and got a heart rate and temp.

All of that was recorded faithfully every day. It became very important. With that information I was able to develop a plan of action with the cardiology nurse practitioner with whom I had an excellent relationship. We did everything over the phone, and I could call her and get a diuretic adjustment, even when Zaroxolyn was needed. We had all that available.

When it was necessary, I could take him to the local hospital and have bloodwork done, metabolic profiles, BNPs whatever the NP wanted.

This wouldn't have been possible if she didn't trust me to have accurate information to give her.

You may or may not be able to develop the same raport with a medical person, but you should always have an accurate record of what your CHF is doing each day. It isn't rocket science, it's just being practical.

I can assure you, if you bring your little black book daily diary with you to your next cardiology appt. you will get some attention.

If you are prone to CHF, I think this is vitally important.

 

[aussigal]

Good to read this happy post from you Lyn...I think you should go visit this wonderful GP for a confidence boost everytime you get the urge to strangle one of those other Dorks.!

 

[Dina]

Lynn and Karlynn :I'd like to do some 'ranting' ...... how about a slumber party , where we can also 'rave' about all the handsome doctors-
in between the ranting , I mean- Dina

 

[lynnconnolly]

Hi all, thank you so much for your posts. Bob - thanks very mucuh for your advice. I'd never heard of aquapheresis until your post, but given that the cardio did just check my ankles and dismissed it, I can't see he's going to expend any nhs money on what is probably an expensive treatment, but it's very good to know there's an alternative so that if I feel the dieuretic isn't working, I can talk to my gp about it.

Nancy - thank you as always for sharing your experiences. I'll do as you suggest and start to keep a diary daily with my weight and measurements.

Dina - my doctors aren't very easy on the eye to be honest, but I'm always up for a party and a rant

This forum is such a life saver, literally and metaphorically. If it weren't for posting here, I'd never have known that others have atypical symptoms... I'd have thought it was just me Thanks again everyone.

Lynn

 

[PairoDocs]

I agree that sometimes edema doesn't appear in all the 'right' places. People aren't 'average.' By definition, some are above and some are below average. Some folks with no heart trouble get 'tree trunk' "cankles" "lodge-pole" or other very swollen legs, ankles, and hands--and have thin waists, while others look like they've swallowed beach balls and have thin "chicken" legs. What I'm saying is a good doctor realizes this, and looks for ascites and edema, and doesn't dismiss one just because the other may or may not be present. Weirdly, my sister, when she used to jog, would have such swollen hands she could barely use them for an hour after running, while her feet and ankles never changed shape. I had lots of fluid retention in my abdominal organs during my flail valve induced heart failure, but my feet weren't really swollen appreciably no matter how critical I had been. Even when I gained 20 lbs. literally overnight in the ER 12/10-12/11/07, my feet and ankles stayed normal. In fact, if I had died I could have worn the standard sized toe-tag.

So I agree that we should look out for anomalous changes in our weight and waist measurements. I, for instance, suspected my pericardial effusion when I suddenly went from 190 lbs. to 205 lbs. in less than two weeks, and my medium shirts suddenly stopped fitting and some of my large shirts got tight, while I could still, for the most part, wear my normal pants (34 inch waist size). Now I can wear my regular shirts again--weight now 194 lbs. at the most recent weighing. Ankles, of course, and shoe size didn't change a bit during that time. My hands don't show much edema, either, though occasionally I find it difficult to take off my wedding ring at night--a little hand lotion helps me there when it does happen.

Chris