Recent check

[Mdea1988]

I had my annual check on my shones syndrome and as I explained to him that the surgery I had in 2018 to put in 2x mech valves I sadly don't feel much of the benefit and as since have had 2 strokes and heart attack, i brought up i noticed on my bloods that for a while now my red blood has been raised which he thought i meant on occasion but showed him the past 3 results and he looked bk as far as 2015 all were raised i thought it was cardio related but he assured me it wouldnt be likely this long after surgery he seemed baffled and concerned, asked if there are blood disorders in the family, he has ordered full bloods and a btnp blood test I noticed in my letter upon looking this up it is for indication of heart faliure test. This wasn't discussed at the appointment but looking at it for now he is doing what he can to make me feel better but it also causes some concern.

[BeKind28-]

Hello

Sorry you did not get any replies and I can understand your concerns but it is positive they are looking into things as if anything was wrong they could do something about it

Have you heard anymore from them and how are you feeling now x

[Bluehope81 in reply to BeKind28-]

Thanks for not letting this post go unanswered

[BeKind28- in reply to Bluehope81]

x

[Mdea1988 in reply to BeKind28-]

Hiya, having good and bad days I think my heads been elsewhere not knowing too much but it was put at rest a little when I called cardio to ask for follow up after bloods and the secretary was brill and had sent out my letter that day she remembered so it should be with me soon and I'll have more knowledge on what the plan will be and in the meantime I'm trying to loose a bit of weight and just do what exercise I'm comfortable doing a bit at a time. 💗

[BeKind28- in reply to Mdea1988]

Hello

When we are all waiting which is the worst bit I think we all feel like you do at the moment , head all over the place , worrying , we just want the answers and a plan and at least we know then what we are dealing with but from what you have said you will get that soon and I hope you will let us know when you do

Meanwhile you are doing a positive thing trying to lose a little weight so good for you that is great and you should feel so proud

It may not feel like it at the moment but everything will be ok x

[Mdea1988 in reply to BeKind28-]

I've had blood results back and have a few raised things, haemoglobin, hemacrit,white blood, ferritin monocyte count, had a repeat just for red blood a week later and second test is similar high red blood and hemacrit but white is normal again, I did had a bit of a viral so guessing that was white blood issue, waiting on letter from cardio to see what he thinks he did ask if there was any known blood issues in the family and to my knowledge there is non I asked a few relatives. According to my history of blood tests on my doctors app the 2 raised seen to be haemoglobin and hemacrit.

[BeKind28- in reply to Mdea1988]

Hello

At least now you have your blood tests back and they are looking into it they will sort this out

Thank you for the update x

[Mdea1988 in reply to BeKind28-]

Nothing else has happened yet, my gp seem to want to not let me order meds thinking cardio are doing something I called cardio early Oct they said a letter was been sent, not had anything so I called last week and letter had not been sent yet needed signing so I explained my gp aren't issuing meds I have to keep going pharmacy to get emergency meds, she assured me a letter will be sent and should arrive by end of the week. Still waiting on a 24 hour tape that was requested back in August.

[BeKind28- in reply to Mdea1988]

Hello

I am sorry that things have not moved on any this does not help us at all and it must be getting you down I would imagine

It must be a right nuisance keep having to go to the chemist to get emergency meds I really hope they sort it this week

Keep doing what you have been doing though contacting them chasing that letter again I know it is a nuisance but the more you do it hopefully they will get that needed letter sent

Let me know what happens and hope it is positive x

[Mdea1988 in reply to BeKind28-]

Finally got a reply from cardio, they have looked over blood results that were all abnormal and have come to a conclusion of polycythemia and increased ferritin, I don't really understand what these mean but I'm been referred to haematology for further investigation for causes of this, I don't trust google is a good place to know completely what this is but it says a lot of symptoms I can say I've had for years going bk to teens even which does co-inside with my elevated levels even back past 2015, can also be known to cause thicker blood maybe why I had 2 strokes, even when inr had been fine, and a silent heart attack in 2021, as for causes its not got much info but it does mention a type of blood cancer but I think instead of worrying too much I will see what haematology do and say.

[BeKind28- in reply to Mdea1988]

Hello

I am glad at last at least you have got a reply

I have to be honest I have not come across it before either but it seems to answer a lot to what you have gone through

I think we all worry and yet we have to remember the things they can do now are so much more advanced and I am sure when they see you they will have treatments they can do or put you on and will have dealt with this many times before so you will be in safe hands

Yes Google can give us an overall idea on things yet we have to remember it does not have our personal case unlike the Doctors looking after us so no do not worry I am sure you are going to be in safe hands

Let us know how you get on x

[Bluehope81]

Hello how are you doing? Sorry you didn't get many replies , your case is highly specialised, I am aware of Shones, do you meet all 4 defects of the heart? I think the same advice applies that you should have a good diet, and a comprehensive medical plan, did they say what caused the heart attacks, and the stroke, do you take a modern anti coagulant? I have a very rare condition , - not my heart, where the only people who knew about it was the National research team at Addenbrokes, there maybe some specialists out there at the National level, but many doctors don't know about these teams, are you able to carry out your own research on the internet?

Have you been over to achaheart.org/your-heart/ed...

I am not saying you should join, but it seems to be a good place for ACHD patients like yourself.

[Mdea1988 in reply to Bluehope81]

Hiya thanks for your reply, as far as I'm aware it was 4 defects since birth, I know early on my 1st op was done when I was so young it goes around my side as chest wasn't an option at that age (months old roughly) since then it's been artery working widening stents and so far 2 valves been done 1st was aorta in 2001 then as that was a child size it was redone along with mitral in 2018, my 1st stroke I learned was supposedly something that was a result of my last op in 2018 but can't be 100% conformed was my cardio words he said there was a clot noted on a valve but I was never told about it until I asked. And the heart attack he used the same reason it been to do with my op again, he just said it can't be 100% confirmed but it's his beliefs. Thank you I've mostly done reading up on the Internet about my condition, I've not heard of yours. I'll have a look at the link thank you. Hope you are well. X