cannot believe this :(

[chocoholic]

Can you believe they have cancelled my mum's op twice now and we are still waiting to find out if it is this week? They give her a date every week for the following week and then phone me on the day to say it's moved again.

I am really losing my mind. I seriously cannot cope any more and just went back to bed yesterday because I felt so down about the whole situation and the effect it's having on our lives.

Has anyone else been through this? How did you cope with the constant uncertainty?

 

[Cameron]

I was "bumped" twice, once just before Christmas and then again in the early new year. The third try my date was actually moved UP to a Friday from a Monday, which meant we did not have the weekend to worry! The only solace I can give, and what kept me sane, is that they would not bump the surgery unless it was for someone even worse off. In a strange way I was calmer for the second and third attempts as I knew what I would feel like - kind of like a couple of training runs. I hope things get there for you.
Cameron

 

[torreypines]

Sorry to hear you're having such a rough time. It's tough being in limbo when you're dealing with a serious medical issue. While we haven't experienced having surgery delayed, I have recently experienced "not knowing" for several months. I was diagnosed with the BRCA1 mutation this summer. In short, this is the "breast cancer gene" that puts you at 87% risk of developing breast cancer and 44% of developing ovarian cancer. I was devastated and scared as we had already lost family members who were just a couple of years older than me. I was terrified that they would find ovarian cancer when they opened me up. We knew my husband had to have an AVR soon and this compounded the stress. There was a 2 month gap between the time I learned I had the mutation and the time I had the complete hysterectomy and received the pathology reports. And then another 5 weeks for my prophylactic bilateral mastectomy. Fortunately pathology was clean on both accounts. To get through this past 5 months we have had to change our perspective and give ourselves permission to be human and have bad days (like staying in bed). The new perspective is definitely one of faith and flexibility. Last week I bought Kurt some scotch. It was Johnnie Walker's blue label and their slogan is "just keep walking." I think this is apt for what you and your mom are dealing with. You'll get through it, even if it's one day at a time with a lot of walks and hot cups of tea. I agree with Cameron's philosophy. Best of luck to you. Keep reaching out and processing your frustration.

~Christine

 

[Lynlw]

Can you believe they have cancelled my mum's op twice now and we are still waiting to find out if it is this week? They give her a date every week for the following week and then phone me on the day to say it's moved again.

I am really losing my mind. I seriously cannot cope any more and just went back to bed yesterday because I felt so down about the whole situation and the effect it's having on our lives.

Has anyone else been through this? How did you cope with the constant uncertainty?

I'm sorry your family is going thru this Justin has had a few surgeries and 2 of them were post poned, The first one was postponed 3 times first time was because he got sick that was the first week of March,then the surgeon cancelled it the other 2 times he ended up having it in May.
then the next surgery was supposed to be June 5th then 6th and he had it the 19th. It is VERY hard and frustrating, both emotionally getting ready to just have it over with, and having to keep changing, what ever plans you need to make, like time off work, someone to watch kids or even pets if that is an issue, traveling ect. But deep down I really believe things work out how they are supposed to and as long as the person isn't getting worse with the added time, to the point it might affect the surgery or recovery I try to just have 1 temper tantrum, by myself, then take a deep breath and make the best of it. Especially if it postponed because someone really needs the surgery right then and not because of some schedualling error, like the surgeon is out of town. I now TRY not to really believe Justin WILL be having the surgery that day until he is being wheeled down to the OR. I make the plans needed and everything, but plan on it being cancelled that way if it is cancelled i'm not as upset and IF he has surgery, it's a plus.
Justin has also been the person that bumped other kids 2 times because he was the ER case and that is tough too, except you don't have time to do all the presurgery worries ect.

 

[chocoholic]

thanks so much for the replies.

I am doing exactly as Lyn says. Just assuming it's not happening until the day. But people are starting to notice the toll it's taking on me. I guess it's partly my fault for taking too much on myself in trying to be responsible for my mother's happiness through all this. You take too much onto your shoulders then if things go wrong you end up feeling responsible and that hurts.

 

[Gail in Ca]

I have had 3 OHS in 20 yrs and have never been bumped to another date. The surgeon's office gives me a date and that's it. I can't believe they do this to her and you. What kind of a surgeon does this? Do they feel her surgery isn't urgent, or what? I'm glad I live here and haven't been dealt these issues!!! Not yet, anyway!!!

 

[Lynlw]

I have had 3 OHS in 20 yrs and have never been bumped to another date. The surgeon's office gives me a date and that's it. I can't believe they do this to her and you. What kind of a surgeon does this? Do they feel her surgery isn't urgent, or what? I'm glad I live here and haven't been dealt these issues!!! Not yet, anyway!!!

When Justin was bumped it usually was because hearts became available for heart transplants or people were admited needing ER surgeries, who were more critical than someone with a planned surgery.

 

[Maryka]

I was bumped by one day. It was very frustrating and my employer (who had put me on short term disability) scolded me for not giving them the correct date for the beginning of my leave. But, first thing the next day I had the surgery and did not "wake up" for over a day. (I prayed for that--did not want to wake up with tubes down my throat). I woke up on Christmas Eve. A new heart valve--what a present! (My one year anniversary is almost here.)

 

[Jkm7]

I have had 3 OHS in 20 yrs and have never been bumped to another date. The surgeon's office gives me a date and that's it. I can't believe they do this to her and you. What kind of a surgeon does this? Do they feel her surgery isn't urgent, or what? I'm glad I live here and haven't been dealt these issues!!! Not yet, anyway!!!

What kind of surgeon does this?
Sometimes one of the very best in this country (U.S.) operating in one of this country's best heart centers.
My first OHS, I was the emergency and bumped someone who had been scheduled for surgery that morning. I would not have survived had I waited much longer. I was more emergent than the person on the schedule. I was being maintained on a heart balloon pump to help my heart with the load.

When I had my second OHS, I was NOT the emergency and full well knew I could be the one bumped. I prayed I wouldn't be as I fully acknowledge how very stressful it is. But had someone needed my surgeon at the time I was scheduled more than I needed him at that moment, I would have had no choice but to deal with it.

My surgeon was one of the senior, most experienced at Mass General Hospital, which is widely acknowledged to be among the best.

I don't mean to lecture. I simply wanted to explain.

 

[Kiwi Girl]

Can you believe they have cancelled my mum's op twice now and we are still waiting to find out if it is this week? They give her a date every week for the following week and then phone me on the day to say it's moved again.

I am really losing my mind. I seriously cannot cope any more and just went back to bed yesterday because I felt so down about the whole situation and the effect it's having on our lives.

Has anyone else been through this? How did you cope with the constant uncertainty?

I went through the exact same thing waiting for my operation and got it on the third try, you just have to hold on and know that it will happen

 

[sue943]

Which hospital is she going to have the surgery? You said that you had her moved.

Since it is elective surgery if it isn't done by about 16th then I would think it might be after Christmas, unless things have changed they tend to like to keep as few patients as possible over Christmas so unlikely to schedule OHS the week before.

 

[Gail in Ca]

Of course I know that sometimes an emergency comes up. However, even when I was the urgent emergency admitted patient for my 2nd AVR, Dr. Miller fit me in, and I hadn't even made an appt for my surgery with him at that time. My surgery was done late in the evening, after he had completed his other scheduled surgery(s). Was I just lucky that he knew my cardiologist who wanted him to do my surgery? Or is this typical of this surgeon, I don't know.

 

[river-wear]

Didn't Chris (Mainframe) get bumped by Dr. Miller just last month? I remember there being problems because he came all the way down from Washington.

Michele

 

[Jkm7]

Of course I know that sometimes an emergency comes up. However, even when I was the urgent emergency admitted patient for my 2nd AVR, Dr. Miller fit me in, and I hadn't even made an appt for my surgery with him at that time. My surgery was done late in the evening, after he had completed his other scheduled surgery(s). Was I just lucky that he knew my cardiologist who wanted him to do my surgery? Or is this typical of this surgeon, I don't know.

There are so many variables it isn't possible to answer. Has to be an available surgical team, an operating room, an CICU empty bed for post surgery, adequate support staff and so much I don't even know enough to imagine. Each situation is unique to itself.

 

[Lynlw]

Didn't Chris (Mainframe) get bumped by Dr. Miller just last month? I remember there being problems because he came all the way down from Washington.

Michele

Yes he was postponed, the day he got into town for the surgery (not even bumped for someone else) because Miller was "out of town" the day of his surgery, so he had to wait over a week and his CHF got much worse.

As JKM said there are so many things to play into it, depending on the surgeons day, maybe he could fit one more in, but IF they already operated on a full days worth and some were long /complex surgeries, I rather wait than have the surgeon and his staff go into surgery all ready tired.

 

[river-wear]

I rather wait than have the surgeon and his staff go into surgery all ready tired.

Amen to that!

Michele

 

[chocoholic]

Dear all, thanks for the replies., Just to let you know that my mum's surgery was on Weds 8th and she has survived thank goodness. So I will put my next question on post op.

 

[Lynlw]

I'm so happy they went thru with surgery