Finally saw my med records

[lynnconnolly]

Hi all, sorry I haven't been around much but I should have more time now. Anyway, I finally got to see my medical records and I found a few surprises. I'd obviously been told my aortic and mitral valves were in trouble, but nobody told me my tricuspid valve was also leaking. It was classed as 'mild' so evidently I didn't need to know about that.

I also found out that when I was taken to hospital by ambulance on 19th March, I was in heart block; wasn't told that either. I also got copies of the x-ray that the first doctor I saw - who discharged me saying I had a chest infection - apparently couldn't interpret. I also found that when the x-ray was reviewed a few days later, as it seems all x-rays are, the reviewing doctor stated suspected heart failure and noted that I had pleural effusions, but I wasn't contacted.

As things are at the moment, I was supposed to be going back to work on the 22nd July but that's been postponed as I've been feeling so ill lately. I had an urgent cardiac ultrasound last week but as yet, haven't heard from the hospital regarding the results. My cardiologist normally does them, but he wasn't available. I'll just have to keep chasing I guess. I've had a nasty 'flu that's taken nearly a month to clear, so I guess that's dragged me down somewhat. I'm back on the furosemide, but personally, I don't think I should ever have been taken off them in the first place.

Still getting unexplained pain in my chest and back that's much worse at night... although in my chest, it's more like pressure than pain. A new thing with that though is that it's tending to go from under my sternum up to my throat - which feels as though there's a lump stuck there - and then up to my jaw and teeth or sometimes, I feel it in my ears. Again, my cardiologist just sort of shrugs when I tell him and still says there's no reason for it.... same old same old there

Anyway, it's good to be back! I found doing the freelance writing a lot of fun but extremely demanding of my time and hard work... I kinda didn't expect that! It was also unfortunate that my 'flu and chest infection started up on the first day of the job so it took a lot of effort to write 'funny' stuff when I spent a lot of the time feeling very sorry for myself and blubbing like a girl Hope you guys are all doing ok?

Lynn

 

[Ross]

Looks to me that you still have some effusion. More on the left then the right. I think it's effusion, but don't hold me to that. Wish my lungs looked that good.

 

[perrypiratesdad]

Lynn, I have to second what Ross says. I have had pleural effusions, and had many of the symptoms that you described (sore chest, worse when lying down). In fact, mine went into a really bad stage and was a whole new experience in pain every time I would breath in.

I'm not going to comment on any of the other items, but I do know when you have fluid in and around your lungs it does funny things to the heart. My advice would be to go to a good pulmonary doctor for your lungs and get that taken care of and hopefully that will take care of your issues.

 

[BDMc]

Lynn, Just wanted to say" hi" and offer support. I'm starting to hate doctors. Doesn't seem like medical care is any better across the pond! I do hope and pray you have some luck getting answers, and treatment! Brian Mc

 

[zipper2]

Hi Lynn, Good to see you back,sorry to hear it's same old and your
not feeling to par
Just wanted to say hi and good to see you back.


zipper2

 

[lynnconnolly]

Hi and thank you all so much for your replies, welcome backs and kind words I'm feeling very fed up at the mo and it's so nice to be able to come and talk to you all. When my cardiologist told me that I don't need surgery immediately - as they first thought I would - nobody else could understand why I was disappointed. Everyone around me thought I should be celebrating the good news that my valve function had improved and therefore I don't need to have the surgery so soon.

What I couldn't make them understand was that while I thought the surgery was to be this summer, I had a finite 'finishing' time in my head. I figured that assuming the surgery went well, then at most, one year later, I could be as good as new. I know it's not necessarily the case and lots of people post-op have troubles, but as it is, now there's no end in sight. I can just see a future of feeling this bad all the time, except for a rare few days when I feel relatively ok.

I hate that my life is literally in the hands of one person - my cardiologist - and that he is the only one who can affect how the rest of my life is to be. I just want this over and done. I would rather take the risk of dying during surgery than not have it at this point.

Sorry to moan and moan. I'm just feeling sorry for myself today, but thank you so much for your support

 

[sue943]

I know what you mean by just wanting to get it over with. When I was waiting I just wanted mine over with too, it couldn't have been at a more inconvenient time for me with my daughter's wedding looming, in the end I said if it couldn't be soon then I wanted to wait until after the wedding - that proved not to be an option, I ended up on the table two weeks before. Then just for fun was re-admitted with heartblock the day before the wedding so missed it anyway.

Good luck.

 

[Marguerite53]

This is the dance that some of us must do.

I really truly hear where you are. There is no lifting of it unless you choose to lift yourself. And that is what you must learn to do right now. Stay dilligent with your efforts to learn, understand, push for answers. But realize that you are advocating for yourself and be proud and satisfied in it. Patience is the lesson. This is silly, but it popped up in my mind... think back when you just couldn't wait for Christmas (or whatever particular holiday you grew up celebrating with fanfare), or your birthday or something. It was just killing you to have to wait. But you did. And then you had your time, and it was good and somewhat silly to have spent so much emotional time thinking of it.

I'm certainly not saying that you are silly. Rather, I am completely empathizing with you. And I'm not saying to give in. But while you are actively persuing all that you must, please be kind to your inner self. Wrestling with the angst will get you nowhere. In my case, I think I allowed that wrestling to get in the way of some experiences that I might have allowed myself to experience more richly had I just found a way to let go of that inner angst. Work to live your life...that dream inside you (writing?). Do it now. If you feel miserable, yes, you feel miserable. Find a place inside that miserable feeling and rise above it. You can. And you know you can. You simply need to allow yourself to make that choice and move through it.

Again. Do not let up on advocating for your best health. Stay with it. Don't give up.

Please feel free to come here and say anything! We're here for you!

Best wishes.

Marguerite

Hi and thank you all so much for your replies, welcome backs and kind words I'm feeling very fed up at the mo and it's so nice to be able to come and talk to you all. When my cardiologist told me that I don't need surgery immediately - as they first thought I would - nobody else could understand why I was disappointed. Everyone around me thought I should be celebrating the good news that my valve function had improved and therefore I don't need to have the surgery so soon.

What I couldn't make them understand was that while I thought the surgery was to be this summer, I had a finite 'finishing' time in my head. I figured that assuming the surgery went well, then at most, one year later, I could be as good as new. I know it's not necessarily the case and lots of people post-op have troubles, but as it is, now there's no end in sight. I can just see a future of feeling this bad all the time, except for a rare few days when I feel relatively ok.

I hate that my life is literally in the hands of one person - my cardiologist - and that he is the only one who can affect how the rest of my life is to be. I just want this over and done. I would rather take the risk of dying during surgery than not have it at this point.

Sorry to moan and moan. I'm just feeling sorry for myself today, but thank you so much for your support

 

[EireCara]

Lynn, sorry I havent been on to wish you well lately, been struggeling to cope with stuff very similar to your own. Feeling unwell, with no end in sight is sooo difficult. Sending you good wishes for improved health. ((((( HUGS )))))

 

[Jkm7]

I don't understand health care in the UK, but can't you see another doctor? If you think the cardio is not giving you the appropriate care, go to another. That is what I would do.

Are you not able to do that?

We keep hearing health care is free (which, of course, it isn't - your taxes pay for it) but when I read posts about people who cannot get the care they need or have to wait very long times for it, I have to think it could be improved. NOT to Say that healthcare in the U.S. doesn't also need improvement. We all know it does.

I hope I haven't offended anyone. That isn't my intention. My hope is to learn what limitations the patient must accept under other health care systems. What we possibly could be faced with in the U.S. in the near future.

Thanks and by all means, please know I hope you find help and relief. I very much feel for you.

 

[bird lady50]

to lynn collnlolly

to lynn collnlolly

I know excatly how you feel I have been told that I have a B. a. v and that I will need need it replacing at some time. When i dont know . I have chest pain sob talked to my cardoilstst but still no answer. . So I feel just like you. I think lets get this valve replaced while it is not too bad Than wait untill they have to do it. I cant understand why they say wait. surely it is better to do it while you are are not feeling to bad . In my way off thinking you would get over the op more quickly .If they did it sooner than later. I would have mine replaced tommorrow if I could . I find it hard not knowing when it going to replaced.