This Is Me

I have suffered with heart problems since I was born & will do for the rest of my life with various problems, some have been sorted, some can & haven't & some I don't think can. It's not easy, but I take each day @ a time & await the next hospital appointment next yr

[izzyg43]

Hi there!

Just read your post. I think you are the only one here I can relate to as I myself was born with congenital heart disease with continual hospital check ups for life. I have always like you taken one day at a time but not worrying about too much until lately as I have got older. So if you want to talk then please get back in touch. Take care.

Izzyg

[Hidden in reply to izzyg43]

Thanks izzyg, I have since developed other problems as I've got older & these are slowing me down, but the hospital can't see it & the other problems are slowly getting worse

Thankfully it hasn't affected my job as I don't do a great deal amount of walking as I used to, just every now & then if I'm doing xtra shifts & not supervisor

[izzyg43 in reply to Hidden]

Hi again Hero Of Time. Thanks for the reply. I have in the last few months been finding it hard to ride my bike to and from work, so I have given up on that for now, but walking is okay and I am getting older as people like to remind me lol. I have appointment in March, so we will see. I just hope I don't have to have any tests that include needles as I will run a mile. I have been watching a cardiologist on youtube called Sanjay Guptar york cardiology he is really good and he does talk about issues relating to us hearties and I find that he does put your mind at rest, give it a look you might find it helpful. I am quite lucky at the moment as although I have a complex condition I have only got one other health issue. If your other health issues can be sorted you might begin to feel a little bit better and that is a good thing for the heart to manage.

Take care

Here if you want to talk ( blow off steam) god knows I have felt like it at times.

Izzyg

[Hidden in reply to izzyg43]

It's always nice having someone who understands to talk to izzy. My biggest problem is that my local hospital is seeing a middle aged person with all these problems & they are always trying to find other things to blame it on & ignore the truth

Heck even another doctor who doesn't deal with hearts found stuff before them & wrote to them asking if anything could be done & they simply didn't want to know & the same when my husband & I go to appointments

I don't know if I'll ever get sorted out again, but they say they are keeping an eye on me & yet missed stuff, it took my GP finding some of to alert them & even them over 12 months to admit to what was found!

[izzyg43 in reply to Hidden]

Hello again Hero Of Time.

I am sorry to hear that you are not having a positive time with your hospital. I can't really comment on that as it is not my place. It must be frustrating. Have you spoke to the cardiac nurse at the hospital I hear they are quite good ?. The only thing I can say is to try to keep your chin up and hopefully that you will get it sorted out. I was asked if I was going through the change on my last visit and it is fair to ask as there is a link between that and people with or without a heart condition. I think I read it on this site somewhere.

Take care

Izzy

[Hidden in reply to izzyg43]

Hello again izzy

They 1st of all tried blaming it on other stuff before finally admitting the new stuff, it's very annoying as my pace of life has slowed down again, this was blamed on my weight, but I've lost weight & it's still no better

The surgery ain't pushing it & since my legs have swollen are cold along with my hands & feet plus the hairs on my legs have gone

None of my family have heart problems, so I guess I was unlucky to have them when I was born

[izzyg43 in reply to Hidden]

Hi again Hero of Time.

Just to say it must be frustrating when you know your own body and different little changes occur, other people don't understand that it is a worrying time for us. Like you I am the only one with heart disease in the entire family. Because I look healthy on the outside that is all people can see. You should really speak to your cardiac nurse and you can also ask for a second opinion if your not satisfied. I have very cold hands and feet but I think most of the medication I am on that is probably a side effect and I have been having sore throbbing feet and legs with cramps, so I will be telling the cardiologist this in March. I must be one of the lucky ones as I have not had any major problems when I have been seen by the cardiologist. The only thing that I feel unnerving is nearly every year there seems to be a different person you see, so to me it is like starting over. Although I have been looked after really well. As we get older there are new and difficult challenges we have to face.

I wish you well and hope you can get this sorted out, let me know how it goes.

Take Care

Izzy.

[Hidden in reply to izzyg43]

I don't think I have a cardiac nurse izzy, yes it's very unerving seeing different people on your appointments as you have to go through everything time & time again, I'm not even sure my doctors surgery is aware of my heart problems as I changed a few yrs ago

[izzyg43 in reply to Hidden]

Hi again!

All your records would have been transferred over so I assume that the gp knows. I assume you have had regular annual check ups at the hospital from a very early age!. I have never called a cardiac nurse but you can phone one at your local hospital and ask to speak to one, I don't think it has to be a specific one just one that is there on that day. I think there are cardiac nurses that is on this website if you need to ask them a question.

Izzy

[Hidden in reply to izzyg43]

Since secondary school I have been going up to my local hospital every 2 yrs, even to another hospital @ one point

They did, but I don't think they took the time to read them as have never mentioned it as was entitled to the free flu jab @ my old surgery because of it & my new surgery didn't know any of this

My husband is supportive now he knows, but wasn't to begin with as was going along with what the surgery was doing, but now I've explained it all to him & that all the problems are still there, he understands

[Hidden]

That's what I thought as well, but I don't think the previous surgery said why I was allowed the flu jab & so caused the problems, it is worth having

They just monitor mine & act should they need to, but can't see that happening for a long if ever as they seem to think someone of my age can cope & it can vary from day to day

[izzyg43 in reply to Hidden]

Hello!

Sorry I have not replied sooner. I hope you are having more good days than bad ones. I have my appointment with cardiology in the next couple of weeks and I have been trying to get something written down so I don't forget to ask, however it seems like an endless list. I don't want to sound to bad in case they send me for endless tests, I will let you know how I get on.

Regards

Izzy

[Hidden in reply to izzyg43]

That's ok if you take a little while to reply back, we are all busy @ times

They're averaging out, buttoday my right arm has been sore all day & sometimes the pain goes down my hand as well, yet my job doesn't involve heavy lifting

Hope your appointment goes well when it happens