update to niggling concern....

[lynnconnolly]

Hi everyone, my sincere thanks to everyone who posted replies to my concerns about the endotrachial tube. Your advice and honesty about your experiences has helped enormously. It now seems however that I won't be having to worry about the vent in the immediate future.

I went for an echo yesterday and received some unexpected good news and not some not entirely welcome news. Basically, because my condition was caused by Cabergoline (Dostinex), and my doctor has never treated a similar case, nor have his colleagues, he has no precedent to help him decide what's likely to happen with me except that some people have been known to recover to some degree - though not a complete reversal of the conditions - once they stopped taking Cabergoline. When I was first admitted to hospital I was in a critical and life threatening condition and lucky to be alive. The cardiologist first said that my mitral valve would have to be replaced but didn't mention the aortic valve at the time. He said my PH was 'significant' but I don't know what the figures were that are associated with that.

Then, after my angiogram, he said that the mitral valve had improved somewhat and could possibly be repaired but the aortic valve had to be replaced. The PH was still 'significant' and I still had left-sided heart failure.

Yesterday, I went for a follow up echo and the good news is that both valves continue to improve and now, he says I don't need surgery in any kind of a hurry. It could even be years away. Previously, the only reason they were delaying doing it was because he wasn't sure I'd make it through the op and wanted the meds to have a chance to make me stronger and hoped that the PH would abate enough so that the pressure wasn't so bad in my lungs.

Yesterday, he described both valves as 'moderate' while he was talking wiht his student doctor who carried out the echo while he looked on. He wants me to stop taking furosemide for two weeks, then go back for another echo to see how things are going without it. He said my PH has improved radically too. On the face of it, these are of course all good news things however I'm now in limbo...

He said that looking at the echo yesterday, he can see no reason why I'd feel as unwell as I do or have the chest pain that I do or find even moderate exercise a huge uphill battle. This is a familiar and depressing story to me as I was seeing doctors for six months before my emergency admission to hospital and they all said they couldn't find anything wrong with me. So I spent months battling against exhaustion and feeling awful all the time, dragging myself to work and believing myself to be a hypochondriac only to end up finally being diagnosed once I was at death's door.

Now, I'm faced with feeling like this for an indefinite period of time, whereas even though I didn't want the surgery itself, I did want the positive gains after it. While I had an approximate time scale for surgery, I could reassure myself that this feeling ghastly all the time would soon be over. X number of months, and I'd be back to normal, or better than normal. Now, there's no finite time and I'm back to being told I shouldn't be feeling this unwell.

It's depressed me a lot. It should have been the best news I could get and I should be overjoyed. The fact I'm not makes me feel somewhat hypochondriac because it makes it sound like I wanted the surgery and therefore wanted to be very ill. That's not it, it's just that I hate uncertainty and I hate that I'm back to square one in many ways with him saying he can't see why I feel this ill. So, as I say, I'm now faced with the prospect of feeling like this for god-knows how long, with no end in sight, and worse still, the doctor telling me there's no good reason for me to feel this bad.

He's a lovely man and a good doctor, but he never gives me the opportunity to ask him much. I wanted to know the figures relating to heart and lung pressures for example so I could ask you guys about them. I wanted to know if I still had heart-failure etc., but he's very brusque and moves on very very fast, so I don't get to ask these things. I suppose what I wanted was to say to you all, 'this is the pressure figure he gave me' or 'this is the x-value of this thing' if you see what I mean because then, if someone said, 'yes, that's the same as mine and I too still feel this ill' then I wouldn't be stuck with this horrible feeling of being a malingerer. I'd feel validated if you see what I mean. Ultimately, the doctor knows the medical mechanics of my condition of course, but he's never had it himself so he can't know what I'm feeling.

I feel guilty that I'm not happier that my surgery has been delayed. There must be dozens of people on this forum who would give their right arm to spontaneously improve and not need urgent surgery but I can't help feeling very depressed that it looks like there's now no end in sight to feeling this crappy. Thanks for letting me whinge... again... at length, again... and I can't tell you how glad I am that I have you all to talk to. People who don't have these problems just don't understand so it means a lot to me to have you guys. Thank you.

Lynn

 

[Bonzo Dog]

............. Basically, because my condition was caused by Cabergoline (Dostinex), and my doctor has never treated a similar case, nor have his colleagues, he has no precedent to help him decide what's likely to happen with me except ...............................
Lynn

Be hard here Lynn. Do you want to be this guys learning curve? Could be time to spread the net and find a cardiologist with experience in valve damage from Cabergoline and/or other connective tissue assaulting drugs.

 

[ctyguy]

Bonzo Dog is right, if this doctor hasn't treated a case like yours then it might be time to find someone who has and get another opinion. Nothing against your cardiologist but it sounds like your circling back to where you started and you already know where that leads.

 

[lynnconnolly]

Hi Bonzo and ctyguy... you may well be right, and thank you for your replies. I do feel like I'm going around in a depressing circle. The cardiologist does seem to be a very good doctor - at least all the other doctors rave about him. An 'eccentric genius' one said - but he is kind of dismissive and has a tendancy to make you feel like you just have a cold or something. For instance, when I was first in hospital I mentioned going back to work to him and he sort of shrugged and said 'well there's no reason you can't go to work if you feel like it' At the time, I hadn't realised the gravity of my situation and it was only when I repeated what he'd said to other doctors that they sort of looked incredulous and said words to the effect of 'no chance, you can't go back to work in the forseeable future'

I'll take in a list of things I want answers to when I have the next echo in 2 weeks and if I don't get decent responses, I may well ask to see someone else. I hate that kind of thing though... I'm not good with confrontational type things and I presume he'd think I was doubting his abilities if I asked for someone elses opinion.

 

[Dina]

Just to start off , please dont feel like its you - a hypochondriac and all.
I had serious tricuspid regurgitation with pulmonary hypertension for 6 years
before my they finally did my surgery. I told them how bad my symptoms were ; the breathing , the fluid accumulation , but no one wanted me to have
the valve replacement.I know how it feels when they brush off these symptoms as minor and you know they are not.So as I waited my condition got worse ,now I have rt. heart failure because of the waiting.
But you are improving on the echo, though still have the symptoms. Are your
symptoms any better at all? If not I would give yourself a little time to see
if your body catches up to your results,but if you are the same after 6 months or worsening , demand answers and action.
I looked on my old echo for some normal values and MY pulmonary artery
systolic pressure was 39 and this was described as mild pulmonary hypertension. I know it is higher now ,like in the 40's and it seems I was told
that 40 was a moderately high pressure .The ejection fraction norm is
53-77% ;Mitral EF slope is 80-150 ;Aortic opening is 11-26 ;Aortic root is
20-37 ;Lt Vent. diameter during diastole is38-57 ;Lt Vent septal thickness
is7-11. If I find anything more relevant I'll mail you , otherwise Im sure someone will give you some info soon.
I want to say congratulations since you may really be on the mend, but
I understand the ambiguity of this news .
Wishing the Best for you

 

[lynnconnolly]

Thank you Dina, you're all so understanding. I don't know what I'd do without you all. I have a GP appointment later today so I will ask him what the figures were from when I was first in hospital so that I can then compare them with what I find out at the next echo. Sorry to hear you had such a struggle for so long. It's very hard when you know how bad you feel but it's not acknowledged isn't it. Thanks for all the facts and figures too.

Lynn

 

[Bonzo Dog]

I'm not good with confrontational type things and I presume he'd think I was doubting his abilities if I asked for someone elses opinion.

Does it matter what he thinks!!!? WHAT MATTERS IS YOUR HEALTH. If you have to ruffle some medical egos, well so be it.

Previous posts indicate you are an organised and resourceful researcher into medical matters. You may be able to locate a Cardiologist with experience in your problem area. Ring their hospital, ask to speak to their secretary,( all Consultants have them squirreled away in hospitals), push to be reviewed by them.

It's not ditching your existing Dr, it's getting a second opinion. Perfectly acceptable.

 

[lynnconnolly]

Does it matter what he thinks!!!? WHAT MATTERS IS YOUR HEALTH. If you have to ruffle some medical egos, well so be it.

Simon, you're right. I should do just that and will in fact have a look now if I can find a cardiologist with that experience. Thank you

 

[ALCapshaw2]

Can you obtain copies of your Test Results?

In the USA, there is Federal LAW that requires medical care providers to provide copies of their records when requested. There may be a copying charge but that is usually waved if you are taking the copy to another Doctor (such as your Primary Care Physician...or another Specialist).

YES, write down all of your questions, maybe even make 2 copies, and present your questions to the Doctor on your next visit.

'AL Capshaw'

 

[Nancy]

I haven't been following your posts too closely, but I did read this one and see that your diagnosis included PH among other things.

My husband had PH. It is a rare disease, and not too many doctors really know how to treat it. The PH associations recommend getting to a specialist who sees only PH patients. I don't know how that would be managed with your healthcare system. Many cardiologists and pulmonologists "think" they know what it is all about, but in the vast majority of cases, they are so wrong.

Here is a link to the Pulmonary Hypertension Association forum. I suggest that you join and post there too. The people on the boards there are very nice and helpful.

http://www.phassociation.org/Message_Boards/main.asp?board=1

In my husband's case, his former cardiologist just ignored the increasing pressures until he was near death. I took him to the Emergency Room, and after they ran some tests, the on call cardiologist told us about the PH and that it was severe. He also told us the only one who could treat PH was located about 20 miles away, and that there probably wasn't much hope.

Well, I contacted that doctor, Joe was taken in within the week and admitted to the hospital right from the appt. He stayed a month in the hospital, but they did straighten him out, and got him on a (then) experimental drug, Tracleer. That worked and after being on it for a while, his pressures dropped to the mild to moderate range.

PH used to be considered an end stage disease with no help. All that has changed with the advent of many new treatments and a lot of research. People are living longer and with a good quality of life. There is now hope. But most of the doctors out of the loop in PH management don't have a clue what is going on with PH treatments and research.

If you have a doctor who is having "duh" moments when presented with your medical problems, then you have to get very tough and proactive in getting help for yourself. The doctor's brusque manner may be a purposely designed attitude to put you off and keep you from asking questions that he cannot answer because he doesn't know, and he doesn't want you to know that he doesn't know.

Remember the old saying, "The best defense is a good offense". That would be the case with your doctor.

You need to find out what your pressures are, and you should try to get a copy of your actual TEE report.

PH can cause a host of nasty symptoms. One of the most troubling one is fluid retention (CHF), which with PH is more severe than with other heart related conditions. Keeping fluid levels under control is one of the keystones of PH management and it is not an easy thing to do.

Here are some links to a site for CHF, which discusses PH. This is run by a man who has CHF and he discusses things in ordinary terms. It's quite helpful.

http://www.chfpatients.com/ph.htm

http://www.chfpatients.com/ph.htm

 

[lynnconnolly]

Nancy and Al, thank you very much for your replies. Al, we can see our medical records if we request them and pay for them, but a friend of mine once did that and it took them ages to finally give her access, then they took out several things saying that it wasn't in her best interests to see these things - as in, would be detrimental to her health to see them - which they are allowed to do. I will ask to see them though when I see my GP today and see what his response is.

Nancy, I'm so sorry to hear that you and Joe suffered such a lot, and thank you for your advice regarding the PH. Certainly my cardiologist gives me the impression that it's not worth bothering about but I do want to look into it further so will check out those links. I suspect you may well be right about his attitude too.

Thanks again, Lynn

 

[Curtsmum]

Lynn, wishing you luck and hope you can get some answers, if you feel so bad in your health, i'm not suprised you feel depressed. like others have said try to find somebody with experience, if you was feeling good it would be great that you dont need the surgery yet. Hope you can get this sorted all the best.

 

[lynnconnolly]

Hi Paula, thank you for your message and your kind concerns. I'm feeling a bit better now I've seen my GP today. He was very reassuring and much more clued up than the last GP I saw, so I'm going to make sure I always see him in future Hope Curt's ok.

All the best to you both,#

Lynn

 

[lynnconnolly]

Be hard here Lynn. Do you want to be this guys learning curve? Could be time to spread the net and find a cardiologist with experience in valve damage from Cabergoline and/or other connective tissue assaulting drugs.

Simon, I've taken your advice and contacted a specialist at Sheffield centre for pulmonary hypertension. I've always felt that the PH was being largely ignored and so I emailed him to see if the symptoms I have at the mo might be because of that more than the heart problems. I'll let you know when/if he replies.

Lynn

 

[Nancy]

I am very happy to see this post about a PH specialist.

 

[lynnconnolly]

I am very happy to see this post about a PH specialist.

Hi Nancy, thank you. It was your advice as well as Simon's that prompted me to email the PH specialist, as well as ctyguy and others. I'm very grateful to you all for your continued help and advice. It means such a lot to me

Lynn