Surgery Cancelled

[Jan]

Hi To Everyone
My AVR Surgery which was planned for Nov 7th has been cancelled and will not now be done untill after Christmas,

I had some pre op tests done on Oct 29th and some swabs taken, last Sat Nov 3rd the hosptal called and said I needed to get some antibiotic cream as I had a nasal bug I was told not to worry that it would not stop the surgery going ahead, I got the cream within the hour and have been using it since.

Today Nov 5th, they called again and said I needed antibiotic cream, I told them I had some and had been using it since Sat
the senior nurse said that was fine,
Two hours later the Surgeons secretary called and said because of the nasal bug he could not do the AVR and would not do it until after Christmas, There was no discussion the decision was final.

I realise that you cannot have AVR if you have any infection, but I think this should have been explained to me at the first call on Saturday, also I feel angry that I have not had the chance to speak to a doctor also that I have not been given another date just told "after Christmas"

Since I found out I needed AVR in June it has been a stressful time for myself and my family
As you all say The waiting is the worst
Now I feel that I am in limbo I do not Know when I can expect Surgery , I have always been a great believer in the UK NHS
But I feel so let down.

I think it was Billy who said people in the USA are customers
we in the UK are paitents, it is so true.
We in the UK pay into the system all our lives and when we need it we are at the mercy of these doctors, we have very little if any choice about our treatment I did not even know what valvle he was giving me.

So where do I go from here? do I complain and find myself pushed further down the list or do I just accept my situation
I am in a no win situation

please forgive me for moaning but I needed to let it all out

Thank you VR.COM I will always be grateful to you all,
you have been my friends and supported me please think of me I need your positve thoughts

Jan

 

[hensylee]

Jan - Well ain't that a crock? Just slapped you right down - shame on them. However, you might be better off if you truly do have an infection as other valve replacementers will come along to tell you that infection can be a danger. If you can just put it aside and enjoy the holiday season, that might help some, but you know it's still hanging over your head. We know - we understand - so many have had delays and that just makes it worse - but we are here to listen and to prop you when you need it, as you do now. I had a LONG drive today and that is when I do my prayers - so I prayed for you today. God bless

 

[sylviayasgur]

hi jan!
i am so sorry to hear about your postponement. yes, you have it right, the wait is agonizing.
my husband joey's surgery was postponed a week due to the wtc attack in nyc (it was scheduled for the day after the attack). we were pretty upset, but the awful events quickly put things into perspective for us.
by the time his day rolled around, he had caught a cold. at pre-op they drew his blood and the surgeon called to say that although his white blood count was borderline, he was willing to do the surgery the next day and didn't foresee any problem.

i'm sorry, but i'm not familiar with how the uk nhs works, but it must be quite different and difficult if you didn't get to speak with your surgeon personally.
also, you don't seem to have the choices we do here? did i get that right? do you have a choice of surgeon? procedure? i know you said you don't have a choice of valve, right? why is that? isn't it your body? wow! how awful!

you are in my thoughts. i'm truly sorry about the delay, but i am a very strong believer in "everything happens for a reason" . maybe the time wasn't right....

i know i speak for everyone here when i say we are here for you in every way. please do not hesitate to bring your feelings here to this forum, whether happy or sad or angry_whatever, we are here to listen and help.

please keep us informed as to what happens.
God bless you,
sylvia

 

[Gillian (in UK)]

Cancellation

Cancellation

Jan - What a blow for you and how stressed and helpless you must feel. In these sorts of circumstances I always feel I need to do something just in order to feel a bit better. For example, could you speak to the surgeon's secretary again and ask when the lists for January are arranged and when you might expect to hear?

I know you don't want to be labelled a nuisance, but sometimes its easy to be forgotten if you say nothing, and a little bit of assertiveness can help.

I agree with Sylvia that sometimes when I look back on things like this its possible to see that it was actually for the best in some strange way. But I'm sure that's not how you look at it right now.

Keep your chin up! And hopefully you'll soon be looking back on this time as just part of the story that lead to a new and much healthier you.

 

[Simon Gee]

bad news!

bad news!

Hi Jan,

so very sorry to hear your news. I can really understand your frustration and anguish, but there are sound medical reasons for delaying your surgery as the risk of infection is a real concern. However, Gillian is quite right - a little assertiveness wouldn't hurt. It sounds as though your surgeon's secretary has adopted that rather high handed attitude of many of the non-medical staff in the NHS, but just let her know that you are not prepared to be pushed around. Do ask her when the lists are prepared and for an indication of when your surgery is likely to be, something a little more specific than 'after Christmas'. I stayed in contact with my surgeon's office throughout the period I waited for a date for surgery, not making a nuisance of myself (I hope) but asking for information. I found them very helpful.

As everyone else has said, keep in touch. We're all here for each other.

Best regards

Simon (in Hampshire)

 

[Tammy]

What a Bummer.

What a Bummer.

Jan,
I know this is a difficult time. Just when you were all syched up they Delay the surgery.
Try to remember everything happens for a reason and if it is in your best interests than it is a good thing.
I would probably, as Gillian suggested, make a phone call just to get more info on why such a long delay etc. It may give you peace of mind to speak with the Doctor. I don't know how all that works in the UK but it may be worthwhile.
Kick back and enjoy the Holidays with family and friends and try to think happy thoughts. (Easier said than done - I know).

Take Care,

Tammy
MVR 04/06/89

 

[Jean]

POSTPONEMENT

POSTPONEMENT

JAN,

That is a real blow to be all set and ready and then have the rug pulled out from under you with no definate date coming up.

I had a somewhat similar situation...but my situation was much more palatable. My doctor's family was involved with that Egyptian Air crash two years ago and he had to deal with family matters. My surgery was put off until after the first of the year too with no real date set.

However, that was all very understandable and when they did call me right after New Years, they were very accommodating and eager to service me.

I hope everything goes ok for you from here on out. God bless.

 

[Jessica_B.]

How stressful!

How stressful!

At least they could, as you said, have offered you a proper explanation.

The waiting game sucks! You que and que forever and then something happens and all of a sudden whoosh! You're right back at the beginning, having to que your way back up! But if they are having you sort of start over again they can at least provide you with a better estimate on when you can expect the surgery to happen!

Endocarditis is no fun so you really shouldn't have valve replacement when you're working on an infection...

Take care of yourself! I hope your wait will not be too difficult! Or loooooong for that matter.
Good luck!
/Jessica

 

[Peachy]

Hi Jan

Bad news. You must be feeling really awful thinking it would all be over in a few days time and then this. I can understand that they don't want to operate if you have an infection but to not be able to give you a more precise date for your surgery is just unbelievable. You should get in touch with the surgeon's secretary and try to get a more precise time. I have been told that my surgery will be in the "Springtime". Not sure what month they mean. I intend to contact the hospital after the Christmas holidays to try and find out what month they are talking about. It is easier to make plans if you at least have an idea. All I know is that I will be getting 2 to 3 weeks notice. Take care and keep smiling.

Peachy

 

[Jan]

Thank you to all,
I've read all the very kind replies, and what you have all said is so true, things do happen for a reason I just cannot see it yet I am ashamed to say I am feeling sorry for myself, but I am going to snap out of it. I promise.

I saw my GP today and she intends to write to the hospital on my behalf,also we have decided that she will do nasal and throat swabs on a monthly basis to try and ensure that if I get any bugs the can be dealt with straight away, so WHEN I get a new date I should be healthy.

Once again thanks, you are all SIMPLY THE BEST

JAN

 

[joy]

i'm sorry!

i'm sorry!

I'm sorry your surgery got cancelled. I think it's a crock having to wait with no explaination, but maybe it's for the best? I understand that you are angry, you can vent to us, we understand! YOu have the kind of medical care it sounds like the Naval Hospital Bremerton has! HA! THEY shouldn't be able to call themselves doctors, but pompass (nevermind) . THey are mean, to say the least!
Well, take it easy, and feel free to e-mail me anytime if you need a shoulder! We're all your friends here.