I am so sick of fighting

[lynnconnolly]

As some of you will know, I've had terrible difficulties with the health service - as have many of us I know, but I'm sooooo sick of fighting them just to get them to listen and do something constructive.

In a previous post, I asked advice about these odd episodes I get which involve first feeling very sick and dizzy, colour draining away followed by my heart bouncing around totally out of rhythm and all over shaking. Well, lots of you kindly replied and suggested I may be having small heart attacks or that my symptoms could be indicative of endocarditis.

I told my cardiologist about them and he said he couldn't think what my 'funny symptoms' may be but he gave me a portable ecg gadget and anyway, this morning, I had a similar, but not the same, episode. This one hardly affect my ticker at all except my heart was racing and felt 'weak' but I had the weirdest shaking/tremors. For some reason, my head nodded or shook totally independently and uncontrollably, followed by the rest of my body shaking and a weird sensation of something fluttering in my abdomen and groin. This came and went for about 30 minutes.

I went very white apparently, was cold to touch but was sweating and had the rapid heartbeat and dizziness. I thought 'this is it, I'm about to have a stroke' because I also felt kinda woolly headed.

So, my husband called an ambulance. The man who turned up couldn't pronounce aorta or mitral and called it 'atrial and mitrial regergitation' and pronounced it re-gerg-atation not the phonetic regurjitation. He couldn't spell it either so I had to tell him it was spelled regurgitation. When I told him I had pulmonary hypertension, he said 'oh no, your blood pressure's fine'

He then did an ecg which he said was fine but frankly, I wouldn't trust him to interpret my shopping list.

He asked why I had heart failure and what the cardiologist was going to do about the valves. I explained everything and he said, 'they used to use pig valves didn't they, dunno what they do nowadays'

At which point, I could've punched his lights out if I'd had the energy. He then rang my gp and told him I'd woken up feeling sick and got shaky, felt tired etc and had a temp of 37.9. Not unreasonably, my gp said I probably had a virus and should take 2 paracetamol and rest... by now, I didn't actually care if I lived or died and couldn't be bothered making him tell the gp the true story which is that it came out of nowhere - as always - and that I'm always tired because of the heart failure.

I'm so tired of fighting - it was the nhs who caused my heart disease with a drug I should never have been given, then they spent months telling me there was nothing wrong with me before eventually diagnosing me with a chest infection made worse by a panic attack - which they said was why I was sob and why my heart was racing - and sending me home with what turned out to be a heart enlarged to more than double its normal size and two severely regurgitating valves as well as - at the time - severe PH. Not only that, I had so much fluid around my heart and lungs I couldn't breathe enough to get off the floor.

I'm absolutely at the end of my tether and honestly believe they are going to kill me from negligence and/or ignorance. If I went into the a&e under my own steam, they'd just leave me sitting there for four hours and send me home with paracetamol and clearly, calling an ambulance via 999 has no better a result.

In fact, several years ago, I went to a&e because I couldn't move my arm and it was swollen and very painful round my shoulder. They said it was probably frozen shoulder and sent me home with codeine. Turned out it was dislocated. Years before that, I had what turned out to be a ruptured ectopic pregnancy and was 2 hours from death according to the surgeon but I was diagnosed initially as having gastro enteritis and told to stay in bed and have fluids.

I'm pretty certain I've either got endocarditis or endocarditis and clots. Oh yeah, nearly forgot, when they diagnosed my heart failure, I had lungs full of clots and I told them then that about 6 weeks before, my right leg was so painful I couldn't move it and my hip was red hot and so painful I couldn't touch it. My gp at the time said I had sciatica. I now know it was a clot on its way to join the chronic clots I already had.

I don't know what more to do. Nobody within the nhs gives a shi*, they don't listen, they don't care and I truly believe I'm going to have to die before they take me seriously, at which point, the pm will show what they didn't see and they'll tell my kids what a shame it was that it wasn't spotted earlier. The fact I've been telling anyone who'll listen for months that there's something really wrong with me won't count for anything.

Sorry that was so long and so self-pitying but I just needed to rant. Thanks all for reading - you guys are the only people who understand

Lynn

 

[Bridgette]

Hi Lynn

I can't offer you any advice really but just wanted to say that I feel for you.

Is going private an option for you at all?

Bridgette

 

[lynnconnolly]

Hi Bridgette, thanks so much for replying and for your understanding. No, going private isn't possible unfortunately. I so wish it was but there's no hope of getting the money together to do that.

Thanks again, Lynn

 

[netmiff]

Lynn :

I feel for you. Has the NHS really got that bad? I haven't lived in the UK since 1985, but I have heard horror stories on other subjects, the amount of petty theft and general delinquency and vandalism just leaves me gobsmacked!

Any chance you could move? other parts of Britain may not be as bad, and you do have the whole of Europe to choose from, too. What happens if you go to, say, Germany, on holiday, and take sick?? Are you covered?? it might just be worth arranging a "holiday" somewhere, take sick and check into their emergency ! A bit contrived, maybe, but if it works . . . .

I am going to take a flying leap into left field, as we say here...... and suggest that maybe, could be a little depressed? these kinds of fights and illnessed and worries can take a toll on our systems, which can take a toll on our mental health, too. Please consider it, and consider getting the head examined at a mental health clinic. I know it sounds scary, but they really have thrown away the strait-jackets - well, most of them lol

 

[aussiemember]

Lynn,

I just wanted to write and say I can't believe what you are going through - I totally understand why you are so sick of fighting - it is incredible how negligent they are being about your health. I have no answers but just wish I was there to at least give you a hug. Please continue to share on here if it helps - I will pray that you finally get the treatment you need and the answers you want. Jeanne

 

[lynnconnolly]

Thank you Jeanne and Jeanette - I so appreciate your replies. I am depressed about it, most definitely, so maybe I will go and see the gp and ask about anti-depressants. It's not possible to move right now because of money and ditto the going on holiday too. And Jeanne, thank you for being so kind and saying you'll keep me in your prayers. it means a lot to me - as does your offer of a hug

Thank you again all
Lynn

 

[deano89]

can you not asked to be referred to a hosital of your choice under the newish NHS rules, the doctor i saw after explaining all the little changes i had experienced told me i was being obsessive looking for everthing then listened to my heart and said you do know you have an innocent heart murmur and your exercise tolerance is down to your asthma, i replied it was innocent!! and this is not asthma, he went on to say i am going to refer you to hospital cause your not going to believe anything i say,
now i am waiting mitral valve repair, he almost broke me to the point where i felt it was all in my head and i was a hypocondriac and i was wasting his and other peoples time! i so nearly didnt bother going!!
as many have said on here you know somethings not right so you need someone who will investigate it ,i would try to get refered to another hospital via your GP

 

[Woodbutcher]

Blimey, I dont blame you for having a rant, you've every right. I really feel for you.
It may be an idea to write or see your local MP about your case, sometimes they can shake things up a bit ?
Years ago my father was on a waiting list here in the UK for bypass surgery and he'd got to a point where he could hardly walk up a small hill. So, he took a trip to France and saw a local doctor, was sent straight for a scan or something and directly to hospital for surgery. With five times as many doctors and surgeons and the same population as us, there is no waiting list... And wine served with meals and all private rooms ! And mostly paid for by Uk through a E111 card! Infact if I dont get a date in the next couple of weeks that's what I'll be doing too...
Best of luck ...

 

[Guest]

Lynn,

I don't have any advice for you, but do know that thoughts/prayers are en route to you....



Cort | 35swm | "Mr Monte Carlo"."Mr Road Trip" | pig valve.pacemaker ...MidW Blast = 01/17/09
WRMNshowcase.legos.HO.models.MCs.RTs.CHD = http://www.chevyasylum.com/cort
"Gonna do my very best" ... ABBA ... 'Take A Chance On Me'

 

[lynnconnolly]

Thanks so much for your replies guys. Deano, I can totally empathise with you. They make you feel like the world's biggest hypochondriac don't they?

I was going to get a second opinion at one point but it does mean going to Sheffield for one thing but secondly, everyone - but everyone - tells me that my cardiologist is one of the best cardio in the country!

And to be honest, it's not just him, it's the whole system. I really believe that the nhs has an unspoken policy that is words to the effect of 'if the patient isn't at crisis/life & death point, do fri* all and wait and see'

I feel like I'm not so much slipping through the net as trying to find a net!

Woodbutcher, I did also look into the issue about going abroad - but money's a bit prohibitive at the mo - but from what I could tell, the new EHIC card only entitles you to emergency treatment abroad, as in, stabilising a condition until you can get home or doing urgent surgery such as appendix removal. I wonder then if your dad was given the surgery because they didn't think he'd survive the trip home and it was urgently needed?

And Knightfan, thank you, I truly appreciate that

I'm going to go and see my gp and ask him to do a set of bloods to test for endocarditis which I imagine he'll do if he can but we shouldn't have to chase everything should we? I mean, why is it not occurring to any of my 'health professionals' that these symptoms may be endocarditis? It seems to me that if you can't diagnose yourself, you're screwed. Unless you can go to someone and say 'I think it may be this so do this to find out' you're probably not going to be diagnosed.

The same happened to my mum. She had a pulmonary embolism which was diagnosed as asthma - despite the fact she was 68 and had never had asthma - and she died of it because nobody correctly diagnosed her. My sister had had the same thing and survived and she told the doctors that was what she thought my mum had and they just dismissed her.

It really is very demoralising to feel so alone in a system that on the face of it, doesn't give a stuff. It's a bit like drowning when you can see a boat 50ft away but the boatowner doesn't want to waste his fuel on rescuing you.

Thank you all again for your messages - I'll try to stop sounding like such a whinge now ;-)

Lynn

 

[Mimi]

Hi Lynn,

My advice is not to give up!

I used to tell myself, 'they don't understand, how ill I am because it's beyond their comprehension'.

My mitral valve blew out during the strain of labour. At the time, I was struggling to breath and the nurse thought it was due to labour. I was so frustrated because something was clearly wrong and I was very fortunate that I didn't go into cardiac arrest.

After the birth of my son, I spent three days in hospital. I regularly complained to the hospital staff that something was seriously wrong, but their standard response was, 'you just had a baby, what do you expect'.

Every day I pleaded with the medical staff that I required medical attention. When I was discharged from the hospital I was so angry. In the end, when I left the hospital I went to a GP and told her my concerns. She immediately organized for tests to be done and shortly after I had OHS.

If I learnt anything from that experience is to never give up on yourself. You are the best person to determine how ill you really are. Always seek addition medical advice if you are that concerned. In my case, it saved my life.

Just never give up on the system because whilst sometimes it fails big time, other times it might just save your life.

Good luck, Lynn. Keep strong.

Regards,

Mimi

 

[kfay]

Lynn, when you had this last attack did you still have your event monitor? If not, how long did you have it? You may need to ask to keep it for a month or longer so that you can capture one of these. Are you on coumadin? I'm assuming you are since you said you previously have had blood clots and if I'm not mistaken you have a-fib. If you aren't, and you are concerned that this really could be blood clots, I would get my gp to put me on it asap.

I'm sorry that you have to deal with an inept medical system. I personally have experienced the NHS first hand and was really shocked at the differences between there and the US. I realize that our system certainly has it's own shortcomings, but, quiet honestly, I'll take it any day.

I can totally relate to your experience with the ambulance guy. When we lived there, I was having terrible chest pains one day while I was at a restaurant with friends. A Dr. came in to eat lunch and came right over to the table and asked if I was ok...he thought I looked really unwell. They ended up calling an ambulance and once it got there, all the guy kept asking me was if I had been having marital problems that were causing me to have anxiety. He said I was too young to have chest pains. He literally kept trying to get me to "confess" my problems to him the whole way to the hospital. It was ridiculous. Once I got to the hospital, as usual, I became as huge guinea pig and they had one medical student after another into my room. They wanted to start doing invasive procedures on me and there was no way I was going to let that happen. After four days in the hospital, I finally told them I was going home....period.

Even though I know it is very frustrating, don't give up....keep pushing for answers. I would go for a second opinion even if your Dr. is supposed to be one of the best. Good luck and keep us posted on what is going on.

Kim

 

[Freddie]

Hi Lynn, I may be way off base here, but its just a thought.

It has been said that it is very therapeutic to write everything down when one feels lost, discouraged etc. Therefore, is there a higher medical personal to whom you can write a letter to; to explain your concerns and symptoms?

 

[EireCara]

Lynn, I truly know what you are going through. Its a very lonely and helpless place, when you are so unwell and the very people who are meant to look after you let you down.

I agree with Freddie, and think she is right....at this stage circumstances probably call for some drastic action.

Thinking of you. x (((((HUGS)))))

 

[The English Patient]

Hi Lynn

Hi Lynn

You are obviously feeling really down, I read your post and want to share a couple of thoughts with you. First of all who am I to ask you anything, you know how you are feeling but I couldn't help but feel concerned about the title of your post. First things first if you are feeling like that then go and tell your doctor. Even with the anxiety of leaky heart valves thinking like that is something that is quite likely to be contributing to how you are feeling.

You mention anti depressents but a much better first thought is the opportunity to spend sometime with a cognitive behavioural therapist and you can be referred by your doctor. I can tell you from personal experience as a sufferer from anxiety that symptoms manifest themselves in the oddest ways, aches and pains in all the most concerning places. Some so apparent that it seems something is happening when in fact nothing actually is.

Now please understand I am not saying your symptoms are not real I am not a doctor and I wouldnt dream of offering such an opinion. But I know from my own visits to A&R with 'symptoms' that felt all too real they have all been about my underlying unconscious anxiety.

I have been 'lucky' enough to have experienced CBT and have spent many years learning to understand its principles and even though sometimes my fears get the better of me 95% of the time even with my condition I am calmer and more centered than ever and it is all about the principles of CBT and some self awareness.

I have had my own reasons to be concerned with the NHS; when first diagnosed it was clear the the Countess (a hospital I know you know) were struggling to come up with a diagnosis that fitted some standard box. I had doctors telling me about how I was an Angina sufferer when I didint have one iota of discomfort? I wrote a letter to the Chief Executive admonishing my treatment and was taken care of very quickly. Every now and again I think a good letter is like a shot across the bows, 'a little livener'. I know you are a writer so go on write a belter to the CEO of the Trust demanding a second opinion. You know the saying honey, when the going gets tough the tough get going. Never give up, just try to think differently. I remember when my wife had been in labour for over 24 hours one word to the senior doctor about us wanting to go to an alternative hospital got them very busy very quickly. Gone on babe, kick some ass. They are great people doing their best under lots of pressure but sometimes you have to go beyond that and make them sit up. The squeaky wheel always gets the oil so go on kick up some fuss.

Love and best wishes from a fellow Cestrian.

 

[lynnconnolly]

Hi all,and once again, thank you all so much for your replies. Those of you who have mentioned that I am clearly depressed, you're right, I am, but I have a problem over getting counselling in that I am a psychotherapist so it's all a bit physician heal thyself That said, if I can put aside the fact that I know exactly what any counsellor would say, it probably would do me good.

The other problem is, and this may sound ridiculous but I know it to be true, once you see a counsellor or go on anti-depressants in this country, you're labelled neurotic and I get the feeling I've already got that tag to some degree. The one of only two times in my entire life that I've called an ambulance was in March when all this first became apparent. I was on my bathroom floor and turning blue because I just couldn't move any air. When the paramedics arrived and gave me oxygen, I began to feel better. Their diagnosis was panic attack but because I knew it wasn't and insisted, they took me to hospital, very reluctantly.

So many of you have had your own terrible experiences with the nhs - and my thanks for sharing them, it lets me know I'm not just being singled out by karma - and some of you mentioned my writing to a higher authority about my experiences. Well, that's already underway in that I wrote to the Chief Exec of the Chesterfield Royal to complain about the arrogant dismissive pri** who saw me after I collapsed at work prior to my diagnosis being correctly made. That was about 3 months ago and I keep getting letters from them to say they're waiting for this or waiting for that and thanking me for my patience... if only they knew.

Kim, I did have the monitor and did record 4 mins worth of the heart activity during this latest weirdness but oddly enough, this time, my heart was the least of the problems. What really worried me was the freaky head movements that I had no control over. My first thought was that I had some kind of embolism somewhere that was causing this bizarre shaking thing. The ambulance guy witnessed it coming and going every few minutes but was infinitely more interested in the fact that my date of bith was the same as his wife's.

And EP,as to the Countess of Chester... well, good luck dude. Despite the fact that 2 of my sisters work there - one a sister one a services co-ordinator - it's one of the worst hospitals I've ever come across and was where my mother, sister and brother died. I'm not over fond of the place... I do however appreciate your good wishes

Although, to be fair, I think they are all the same unless it's a BUPA hospital.

Thanks so much again to all of you. I can't tell you how good it is to talk to people who understand and don't fob me off wtih platitudes and - well meant - hollow assurances.

Lynn

 

[Freddie]

Lynn, have you written to anyone in regards of what you said in your first post?
I would keep the letters going to whom ever it may concern. Don't back down.

 

[hall]

Hi Lynn. Unfortunatly, I don't have any answers for you but I feel bad reading your post. Keep up the fight and hopfully you will win soon. Prayers for you! Wishing you the best of luck.

 

[Dawn-Marie]

Hi Lynn ~ I don't have any answers for you, but i just wanted to say i'm so sorry for what you're going through and i understand why you feel the way you do. I've got severe aortic stenosis and severe pulmonary hypertension and i just had a valvuloplasty done, which has made me feel worse. They have said i'm inoperable and say that they talked with a Dr. Svensson at Cleveland Clinic about something coming from France that might help me, but they give me the runaround when i ask exactly what Dr. Svensson said. Thenurses that are the main nurses in The Partner Study there say nothing is going to happen (not in 2009 anyway, like Dr. Svensson is saying). So, i know how frustrating it can be, as i am so upset that nobody is helping me. I'm swelling and having more shortness of breath since i came home from the hospital and all their goal is is to keep my potassium level from falling, nothing more, as they say there is nothing more they can do.

I pray that you find a doctor who will listen to you and take you seriously and be able to help you soon.

Best wishes,

Dawn-Marie

 

[abbanabba]

Oh Lynn (((hugs))) it's disgraceful what you have been through. I'm glad you've put this in writing to a higher authority - which was what I was going to suggest. Over here we have a health ombudsman to deal with complaints of this nature, so I hope you're system has the same checks and balances.

I hope you are also documenting your symptoms and treatments so there is a record of what has been going on. I would also write a letter to your local GP outlining your health issues and why you think certain steps should be taken because of that. I know many doctors get funny when patients start dictating how things should go... but they are not always the most informed and should be able to take some "sensible" directives. At worst, I have instructed mine to "humour me and prove me wrong!".

Hang in there lovey. I hope resolution is in sight for you soon.

A x