Still waiting for a reply

[RunMartin]

Hi
I am still waiting for a reply from the hospital as to whether I am going to have an AVR soon or whether they will leave it for a while. This was four and a half weeks ago! I have sent a letter asking why I have not heard anything yet but I have had no response from that either. I had my annual echo etc at the beginning of October and I was asked to see the cardio again two weeks later. He told me the echo had shown my heart had enlarged significantly since last year and it was probably time to have the valve replaced. They redid the echo and the mesasurement (LV DD) was 6.4 mm as opposed to 6.8 mm that was taken two weeks previously (last year it was 5.6 mm). The cardio said he needed to talk with someone else first before a decision is made. Note in England we have a National Health Service and therfore do not need private medical insurance. I am sure if I had medical insurance the response would be much quicker!

Martin

 

[Ross]

Does your Doctor have any input as to how fast things get done over there?

 

[Gemma]

Get on the phone

Get on the phone

Martin,
Phone them up!!!
When my boyfriend Jim was diagnosed as having a bicuspid aortic valve in Chester, the cardio he saw firstly went on holiday without signing the letter telling his GP what medication he should be on, then the cardio's secretary didn't forward his details to the hospital where he's having surgery. It was only in May (2 months later) when his dad phoned to see what was going on that he found the CTC still didn't even know Jim existed! And the secretary of the cardio in Chester was very reluctant to do anything about it so it took Jim's dad to phone the CTC and explain the situation. Later that week he had a letter from them saying how long he'd have to wait for surgery.
In my experience letter-writing doesn't always work! I'm an optical receptionist and we constantly have patients phoning to say their doctors haven't received referrals. In fact they usually turn up under a pile of other letters in the in-tray.
So the best option and the easiest way to get an answer is probably to ring and get the name of someone who will deal with your query so you can ask for them again in future!
Hope this helps,
Gemma.

 

[RunMartin]

Thanks for the replies,

I have just phoned the Hospital and spoke to the cardiologists secretary. She said the doctor received my letter and his reply is on a tape (recording) which has not been processed yet by whoever types the letters. The secretary did not know what the cardios reponse is until the tape is played, which is likely to be later on this week!!!!??????

Looks like I will have to wait a bit more!

At the moment I am positive about the situation. I know I will need to have the valve replaced soon and I am now more worried about the possible damage I can do to my heart in the mean time. I suppose I will have to leave it upto the experts.

I am still running and swimming (in competitions) but lately I have been noticing the signs of a slight shortness of breath, especially in the mornings and a sore chest/lungs after hard exercise. These things I probably ignored in the past but I am now more aware of due to recent events. I must admit I have been doing a lot mre training recently than I have over the past year, which probably does not help matters.

Anyway I will just have to wait for the letter!


Thanks

Martin

 

[RunMartin]

Fed up with waiting!!!

Fed up with waiting!!!

I phoned the cardiologists again today and spoke to his secretary regarding the cardios decision. She said he wants me to have another echo done by a different cardiologist who specialises in echos (Dr Hancock). She said that my athletics (running and swimming) was making the echo results difficult to interpret? I know that there are members of VR.com who were active up to their surgery (e.g. Conk and Chilihead). I was hoping for a decision of either "wait a few months" or "go and see the surgeon". I do not seem any nearer a decision. I must admit it made me feel a little angry, fed up, let down etc. I immediately went for a run after the phone call (as it was lunch time) and did a personal best for that particular course, even though the original record was a "soft" one. I felt much better when I got back though!!

The cardios secretary was quite helpful when she realised that I had been waiting almost five weeks for this reply (even though I have not got the letter yet!). She said she would try to get an appointment for the echo when Dr Hancock is actually there so I can actually speak to Dr Hancock and possibly get some immediate feedback. I think that originally that was not the case

It seems odd why a decision cannot be made now as the hospital should have my echo results from 1987 to refer to (I did move away from this hospital for three years and hopefully they have not been lost).

Has anyone else had this sort of problem with decisions being made?

I am not sure how to tackle this. Obviously I would rather not have to have the AVR but if it is necessary then it has to be done.

Martin

 

[Nancy]

You are in one of the most distressing and annoying situations. You've got this "thing" hanging over your head and no one seems to be doing much about it.

My husband was in a similar position prior to his last mitral valve surgery. His situation was a little different in that this would be his third heart valve surgery, and he was at higher risk, so it took much, much longer to get a final decision made, the risk to benefit ration comes into play here. He was also extremely symptomatic and was able to do nothing but sit on the sofa, and couldn't breathe even at that. He finally just told the doctor that he wanted to get things done before it was too late and didn't care what the risks were. He just wanted to get it over with and have a chance at living.

But you are in England, and things are a little different there.

It does seem that there is some movement to get you squared away.

I hope that a decision is made soon for you, it's not a fun thing to wait on serious medical problems.

Take care,

 

[RunMartin]

If the Doctor said they would reassess again in three months then things would be OK - I could make plans for the short term and I would be able to put it to the back of my mind. I get the feeling that it will be quite a while before I get the next appointment (if the past few weeks have anything to go by). I have been fairly positive over the last few weeks but this does not seem to help. I cannot plan too far ahead as I do not have any idea what the time scales are and how I fit into the order of urgency at the hospital.

Martin