Frustrated!!!

[Abbanabba]

Hello again boys and girls.... goodness, I've not been able to check the forum for a week and I'm still catching up on everyone's posts!!

Well, I'm back from my cardio visit for my "second opinion" and am really no better off than before I went. This guy also doesn't seem to think there is anything "abnormally abnormal" with my heart - and certainly not anything to be causing the severity of symptoms I've been suffering. I'm having frequent ectopic events... but that's nothing new; I've got really low blood pressure (90/60 - and that's when I'm stressing at the doctors!!)... but that's nothing new; I've got some leakage... but that's nothing new.... So why are things taking such a downward plunge???

When I suggested he check for pulmonary hypertension he told me there was absolutely no reason to think this would be the problem. I showed him my 2002 Doppler with readings "..consistant with pulmonary hypertension.." and his response was: "I don't want to say this is wrong, but I don't think it's an accurate report.". When I queried how he came to that conclusion, he said that because there is a degree of scarring on my valves, that my systolic pulmonary pressure of 41mmHz needed to be "adjusted" and that 20mmHz should be taken off - which would then put me well within normal range (..????..).

He also went on to say that because I had a BT shunt as a child, this overrides any issues with blood flow to the pulmonary arteries and was another reason he thought I wouldn't have PH. MY understanding of this, is that the shunt is a stop-gap measure until corrective surgery can be done, at which time the shunt is REMOVED!!

At this stage, he is arranging for me to do another exercise stress test and also to hook up to an event monitor. He might follow that up with an oxygen level test, but was incredibly reluctant to do a right heart cath. I told him that if nothing conclusive could be drawn from these other tests, I would be insisting on the RHC. He asked me what I wanted him to tell me.... I said "I want some answers. I WANT MY LIFE BACK!! I'll do whatever tests I need to, to rule things out until we can find out what the hell is wrong and get it treated".

So here I am..... still in limbo. Pergatory is going to be a breeze after all of this!!!

The only "positive" that really came out of it was confirming that my dizzy spells are probably being caused by my low bp. I asked if there was anything that could be done to help this (..and to see if that would then make a difference overall..) and he said the only thing I could really do would be to increase my salt intake (...at this point we hear Harpoon falling over in dead faint!!! ...). Hmmmmmmm..... not too sure about that!

Anyhoo, I guess I'm just going to have to wait and see how things go. In the meantime I'm going back to my GP to see what her thoughts are. I still might get her to refer me to a PH specialist. I'd rather someone who KNOWS what they're dealing with tell me I don't have it, than someone who THINKS they know what they're dealing with.

Oh well..... no excuse not to get started on my writing now. It looks like I'm going to have plenty of spare time up my sleeve for some time yet.

Cheers all,
Anna : )

 

[Nancy]

How frustrating! I share your views.

"Thinking" something is thus and so, isn't proving it. Find someone who is not scientifically challenged who can prove or disprove what is causing your symptoms.

See a PH specialist, you know the drill from the PHA website. And let him/her make the final determination about PH. Most doctors don't have a clue about this disease.

 

[Karlynn]

Anna,
Keep pushing and demanding answers. A lot of us know the frustration you are experiencing in not getting answers.

 

[Lulabelle1]

Hi.
Where have I heard this before...?
"blockages not significant enough to be causing you the amount of pain you are in"
(developing 1 month later was.. 4+ bypasses & a heart valve replacement) Don't give up...keep on proddin those so called med experts.
YOU gotta watch over YOU.
Take care , Lulabelle1

 

[Harrybaby666]

I am having LBP Too Abba

I am having LBP Too Abba

Hi Abba,
It's been awhile since I have been on because I have been dealing with my kidney and getting that taken care of, but I wanted to write and let you know that I am right there with you when it comes to being not taken seriously by the doctors and pushed aside. I also have been having Dizzy Spells and my BP has been down to 80/40! Needless to say, the docs are not all that thrilled, but try telling that to my cardio...I just wanted to show my support and to let you know that I am not having any easier of a time than you are. Take Care, and Keep Me Posted...God Bless Harrybaby666

 

[Abbanabba]

I saw your thread Harry and haven't had much of a chance to respond... it sounds like you've been having a pretty rough time all round. I hope you can start getting things sorted out soon, because it's certainly no fun when you don't feel well.

I guess one thing about this site is it makes you appreciate that no matter how bad things may be for you, that there is always someone who is going through just as much, or even more, so I guess there's some small comfort in that (..not that I would wish worse on anyone, but I'm sure you know what I mean..).

Cheers to you all...
Anna : )

 

[Mark Wagner]

I think your on the right track Anna. I would insist your GP send you to someone else for a second opinion. It is your life your talking about, and you deserve some difinitive answers. Don't give up.

Mark

 

[tobagotwo]

I agree with Nancy and Mark. You need another opinion. You should not have to battle your cardiologist to get him to recognize symptoms or issues. They get so glued to their own high blood pressure hype that they seem to think that 80/60 has to be good, overall. Whoever has the power in your insurance system (here it is usually the GP) needs to open up another avenue for you.

The thing that should really set you apart from somebody who is just claiming symptoms for attention or out of irrational fear is your single, plaintive statement, "I want my life back!"

We all stand together here in saying that we hope you get your wish.

 

[Gemma]

Anna,
I agree with what everybody else has already said - you've got to keep plugging away until you get to the bottom of this. Find someone who will do the tests to prove you either have or haven't got whatever problem, not just someone who says the tests that have been done don't suggest anything's wrong.
The more I hear about people's experiences with awkward doctors the more angry I get! Jim's having a problem getting his cardiologist to treat him like a person instead of a statistic - even his GP has said there's no real evidence for him needing the meds he's taking, and that the cardio seems to be a great fan of pill-prescibing regardless of individual circumstances. I could write a book about how crazy this whole "trust me, I'm a doctor" mentality makes me!!!
Incidentally, when I went to Jim's first cardiac rehab session the rehab coordinator mentioned that she had very low blood pressure, I think she said it was something like 90/50 - but it had been low all her life so it didn't bother her, but that if it suddenly got lower than usual it could cause dizziness, etc.
Good luck in getting some answers - remember, it's the 21st century - women are allowed to have an education and ask questions too!!
Gemma.

 

[Abbanabba]

Squeak Squeak Squeak...

Squeak Squeak Squeak...

Thanks everyone for your ongoing support!!

I'm seeing my GP again on Thursday to let her know how unsatisfied I am with my "second opinion". The cardio was supposed to call me a week ago let me know what they had arranged for the tests, but when I hadn't heard anything by Friday, I rang them only to be told that "oh, they can't do those tests in your town - I told your doctor that.... he'll probably call you to arrange something else". Not happy!!!..... and still waiting.

In the meantime, I made the decision to ditch the anti-depressants. I know this is a big "no-no" without Dr approval, but I've been averaging 4hrs sleep a night (..if I'm lucky..) in the 6 weeks I've been on them. They were only making me feel worse because the lack of adequate rest was exacerbating my symptoms and also leaving me so run down that I've started getting mouth ulcers and my skin has started breaking out - which usually only happens when my body is very stressed. Since stopping, I've managed to get an enormous amount of sleep in and am already feeling better for it. It might only be a psychosymatic reaction - I'm sure it takes a while for the drugs to exit your system - but who cares?... as long as it's working!!

Anyhoo, I'll be letting my GP know what I think needs to be done and I definitely won't be taking "no" for an answer. I'm going to be such a pain in the *ss and will make all their lives such a misery, that they'll do whatever they can to make me go away

Cheers everyone,
Anna : )

 

[SJJ]

Anna,
Keep at it girl......I sure hope you can get some satisfaction soon.
Sue

 

[Glenda]

Anna, I like your spirit. You have got to take charge of yourself. Remember we pay the doctor's, they don't pay us. You certainly deserve some answers. I've changed doctor's several times, even right in the middle of cancer treatments and I've never been sorry. My problem now is so many of my symptoms can be caused by several of the problems that I have that I really don't know for sure which doctor to call. All four of my doctors are pretty good about keeping in touch with each other regarding my treatments. If you read my thread yesterday regarding my allergies, they are about to do me in. I haven't slept in four days because I can't breathe. I took some Claridin D but had a terrible reaction so I'm calling the cardio this morning.

Anna, hang there, things have got to get better for you. I'll remember you in my prayers. You sound like such a neat young lady with a wonderful sense of humor. You do whatever you have to do to get some help.

 

[Raverlaw]

Anna,

Keep squeaking! And by all means, do start in on that writing if you can. There's no need to put your *entire* life on hold, is there? Working on a personal project may help take your mind off of some of these issues, at least for a while.

I'll keep you in my thoughts and prayers.

 

[Abbanabba]

My problem now is so many of my symptoms can be caused by several of the problems that I have that I really don't know for sure which doctor to call. All four of my doctors are pretty good about keeping in touch with each other regarding my treatments. If you read my thread yesterday regarding my allergies, they are about to do me in. I haven't slept in four days because I can't breathe. I took some Claridin D but had a terrible reaction so I'm calling the cardio this morning.

I really hope you start feeling better soon Glenda. You sure have been through so much - it doesn't seem quite right that you have to put up with annoying allergies (..and not being able to treat them..) on top of everything else. I did catch your thread, but because our medical system and drugs are so different over here, I couldn't really offer you any practical advice. I hope, however, that your cardio can.
It's also very encouraging to hear that your medical team are all working together. I'm glad your persistance has paid off and you are getting the care you deserve. I'll be sure to check in to see how you're going....

All the best
Anna : )

 

[Abbanabba]

Hey Bill, where have you been hiding..??

Already onto the writing... I always seem have these really vivid and bizarre dreams which I jot down and "flesh out" into stories. I'm also in the process of trying to find somewhere that offers external studies and am tossing up between copywriting and psychology. I figure I might as well do something constructive with my time and if I can get myself a degree, then at least I'll have a much better chance of being able to work again once I get myself sorted out.

The hardest thing at the moment is deciding which direction to take... I love writing and I don't need "official" qualifications to become a copywriter. Then again, I've always been somewhat of a natural psychologist and love pulling people's minds apart (..figuratively - not literally!! ..), but I'm not sure I can afford to take 4 years off to study full-time. I've got another month or two before I have to make a decision, so I'll just have to wait and see what happens in the meantime......

Anyhoo, here I go running off at the "mouth" again... I really must learn to KEEP IT SUCCINCT!!!!

Cheers
Anna : )

 

[Bryan B]

Anna,

If you have been on the antidepressants for 6 weeks you really shouldn't just stop them completely. That can be very dangerous and lead to serious side effects. You need to tell your doctor, or at the very least wean yourself off of them slowly. Ya'll be careful out there with your drugs!

 

[Abbanabba]

Hi Bryan,

I appreciate your concern and was at my GP's today (..I have to keep this brief as my computer has crashed so I'm borrowing time on someone else's computer..) and she asked how I was going with the antidepressents. I told her the trouble I'd been having - especially with my sleep - and before I could tell her I'd stopped them, she said "OK, well we won't worry about those anymore!". She didn't discuss "weaning" off these, but I think I was on a fairly low dose anyway, and since they were capsules, I wasn't really able to cut them up.

It's been almost a week since I stopped and I've not really had any adverse side-effects - except for being able to sleep again - YAY!!!!


Meanwhile, she is referring me for a "tilt-table" (??) test, which will determine whether or not my BP will benefit from an increase in salt... if it does, I will be put on sodium tablets (..this should help my dizzy spells if my low BP is linked to insufficient sodium..), if not, then I guess I'll be back for another round!!

I am still actively pursuing a RHC for a ruling on PH - and actually found some information supporting a link between the BT shunt I had as a child and the development of PH at a later stage. My doctor has advised we will look at that after the tilt test.

I'm getting there......... slowly!!

Cheers all,
Anna : )

 

[Bryan B]

Anna,

Glad you could get off of those without any problems. The kind I'm taking I will have to wean off of them slowly. I've been on them for several months so I'll probably stick with them until everything is back to normal (whatever that is) for awhile before trying to get off of them.

The tilt test sounds interesting. I'm thinking of all kinds of smart-ass remarks to make about it but I'll just save them and wish you luck with the test.

 

[Abbanabba]

Oh come on Bryan - you know how much we all love smart-ass remarks in this forum (..I just read a doozy in your "what in the heck is going on" post - boy, didn't that one make me chuckle!!..).

By the way, it was interesting to read that BP readings should be higher upon waking, than later in the day. When I had a physical for a 3 month exercise trial last year, they made us come in as early as possible so our readings wouldn't be higher due to "running around". Hmmmmm..... It also amused the hell out of me that because of my low BP and heart-rate (..and sensational figure - of course!! (..but then having a rib taken out here and there really helps to keep one's waistline trim!..)..), they commented that with readings like that, I must be a very dedicated athlete. Boy howdy - didn't I just roll around on the floor clutching my sides at THAT one!!

A : )

 

[Raverlaw]

Anna,

Many thanks - you just solved one of the mysteries of my life. No matter what my weight or physical condition, I've never had a *waistline* (more like a handy spare tire ). Now I know that I just have too many ribs!