Asd ongoing update

[gandrdixon]

Still waiting for operation since july only to find out didnt go on list till november for open heart surgery. Problem is im getting more out of breath, dizzyness and pains in left arm more regular. Should i go to my doctors or inform cardiology at QE ?? There may be a chance i may have to wait till May next year for operation

[Fredders]

I would contact cardiology and let them know your symptoms are getting worse. Hopefully they will at least get you in for a further check up to see if they need to bring your op forward. If you don't get any joy from them then go to your GP, but I would be very surprised if they did nothing as my cardiologist has always said to ring the cardiology department if I have any problems or change in symptoms.

Hope you get sorted.

Wendy

[skid112 Heart Star]

HI gandrdixon , sorry to hear it getting worse. Firstly, meds do you have a GTN spray and are you using it? When was the last time you saw your GP for a check up or your cardiologist? Do they know the symptoms are worsening?

Do you have contact details for the hospital, a cardiac nurse or anyone? If so you should contact them and tell them your symptoms are worsening.

I think your symptoms merit further investigation, if all the above questions are negative I think you should visit your nearest A&E

[skid112 Heart Star]

Hi

Sorry if you feel that, it isn't intended

[gal4God]

Inform the hospital.

[Midgeymoo17]

It will be QE Birmingham as it is the on QE Hospital that can treat congenital diagnosis (ASD is a form of congenital heart condition).

[Midgeymoo17]

I would recommend talking to the cardiology team at the QE. I assume by your diagnosis that this is the ACHD Unit in the midlands and therefore all the nurse contact number will be on the top of your clinic letters. Can not promise it will do any good as I know they have often not taken me seriously on a number of things.However, they did always hear me out.

When you talk to them, I would also stress the pains in your left arm. Although I am no expert based on my understanding of ASD's, to me this does not sound like a typical ASD symptom. The breathlessness and dizziness are explained by ASD diagnosis but the left arm pain is certainly not typically associated with (I have checked a number of reputable US Congenital Sources on this while writing and does not mean yours is not related to the ASD). So I would ask the nurses to explain why they believe your ASD to be causing the left arm pain.

If this fails to achieve anything, which I suspect it will, go speak to your GP. They will not manage to move the operation but can offer advice on how to manage symptoms and provide intervening support. Also if they agree the left arm pain is an unusual ASD symptom could refer you for a second opinion of the cause of the left arm pain (small provisio on this one- this is only possible if you GP is convinced the left arm pain is not related to the ASD. If GP suspects cardiac cause they are unlikely to request second opinion as it would suspend your place on the waiting list I think).

I know over the years I have experienced a number of symptoms that could have been cardiac but also other things. My GP has often sought second opinions from non- specialist hospitals. Previously I was experiencing severe breathlessness (went from swimming 4 times a week to not able to walk 10 yards in 6 weeks) and my Congenital Unit would not listen to my parents and refused to see me so my GP sought a second opinion from another hospital where I saw a general consultant peaditrican that ruled out other causes such as Asthma, Allergies and pneumonia. Based on the clinical findings of the paediatrician, who confirmed the severity of my breathing problems and reduced lung function, the cardiology team finally agreed to see me. Currently have a symptom that suggests the congenital heart operation I had at the QE last year may not have achieved as much as was hoped, no surprise that I was accused of making it up at my last outpatient appointment at the QE. My GP has referred me elsewhere to rule out other potential causes and again to collect a second opinion on the severity of the problem.

However, I never hd an issue on the waiting list so think it is possible you GP maybe cautious about asking for any second opinions as it can affect waiting lists.

[Midgeymoo17 in reply to Midgeymoo17]

Sorry just seen previous post about the calcium build up. That sounds more like the cause of the left arm pain.

[gandrdixon in reply to Midgeymoo17]

thanks for the reply, i had a scan September which showed calcium build up but when i saw surgeon November he didn't mention it. have organised phone call with Doctor next Thursday, but i will speak to cardio tomorrow as i cant keep suffering as its starting to affect my work now too

[Midgeymoo17 in reply to gandrdixon]

Good luck with speaking to cardio. I know calling is difficult as I have Fallots tetralogy (includes vsd).

[gandrdixon in reply to Midgeymoo17]

problem is i was promised July,operation would be completed in 5 months. visited surgeon November and he said mid Jan worst, and waiting list lady told we only on list for after seeing surgeon and could be Feb. we are due to got to Mexico 14/4/18 for our 20th anniversary.waiting lady said my have to have operation start of May!!!!!!

[Midgeymoo17 in reply to gandrdixon]

I am making the assumption my original assumption about waiting list you are on is correct. I understand the frustration. When i saw the congenital surgeon at QE was told February ended up in August (more than one reason for this but one reason was surgeon did not know how long list was- so I would trust the estimate by the waiting list lady unfortunately).

To me it is sounds likely when you saw the Cardiologist in July the Multidisciplinary team (MDT) meeting for your case had not occurred.In fact reading previous posts I am 100% that was the case- my scans were July based on these scans surgery was suggested by MDT that reviewed the scans in October of 2016. As such the Cardiologist should have more accurately said they believe surgery would be necessary and as such would now proceed to discussing your case with the surgeons. This is slightly different to actually going on the list. Going on the list is a decision that can only be made at a MDT by the whole care team- not just the decision of one cardiologist(the fact the catheter failed meant their was no dispute but you still could not be added until MDT review) . Then between July and October your case was reviewed at the MDT with the surgeons, anaesthetists and cardiologists where a final decision made.

I am a congenital patient who had surgery at the QE last summer, I assure that unless it is an emergency they only add to the list after your consultation with the surgeon. Personally think it is bad practice because it makes their waiting list look shorter than it really is (there is a twelve week wait to see the surgeons I think- although not sure about this one as I ran away from them and they had difficulty finding or contacting me to say I needed surgery). This said, whoever, told you a maximum of 5 months was having clearly having a laugh at your expense (I got the same story) . After going on the list end of December 2016/beginning of January 2017 I was operated on 20th July 2017- so more like 7 months and over a year from my scans.

Can I say despite my moans about their waiting list management, of which their are more than I have listed here, the care I received as an inpatient was surprisingly good. It was not perfect but all issues I had were related to co-esisting extremely rare congenital disorders that they just did not understand. The care was so much better than the standard of care I get as an outpatient.

[gandrdixon]

i always feel welcome in the QE even when my previous first attempt to cover my hole didnt work. to be truth full it is stressing me out.

[Midgeymoo17 in reply to gandrdixon]

It will be fine. As I said my inpatient care was excellent.

[kingalfred]

The answer is quite simple - see your doctor IMMEDIATELY.

[MrMusic]

Wow! I didn’t know there was a list? When I found out (on the table) that I was too blocked for stents... they scheduled me in 2 days as per my request.. they would have done my CABG on the spot...

[gandrdixon in reply to MrMusic]

Just been told another 2/3 months wait

[MrMusic in reply to gandrdixon]

??! Wow... go to emergency and say you’re having chest pains... but be ready to go.