I am flying out Sunday to Johns Hopkins in Baltimore.
I am confused and scared and wondering if this is normal.
I have only had very limited contact with a "administrator" to 2 of the surgeons. She seems completely inept at her job. On the limited amount of calls she has returned, she has told me completely different things, ie: need blood tests/ then don't need them (just one example)
From the time she said that the surgeons accepted my case (2 weeks ago) she said I would receive email with instructions. I leave on Sunday, and after numerous requests, I received my first email this morning with highlighted instructions that I will need tests, xrays, etc, and orders are attached. BUT nothing was attached.
So, I email her, and she says, that is just a form letter that I put your name into. Don't worry about it. You don't need anything or if you do, we will do it then. She then starts a rant about how hard she has worked to get me scheduled there.
I feel like I am walking into a nightmare.
PLEASE has anyone else had experience there, and is this woman the one who will be coordinating (for better word) the rest of my care?!!!
All Hospitals have a routine of check in. You are going to perhaps the Best Hospital in the United States. Rest assured your surgery will be one of thousands performed this Month. People fly in from all over the World just to be treated at John Hopkins. Rather than be concerned, you should celebrate the fact that you get to be treated at John Hopkins. Lucky you! Go take a nap for goodness sake and stop worrying, peace be with you and have faith!
i can't blame you for questioning the 'Coordinator"in her actions (Or lack of actions)? as with a pending surgery lined up (and considering were talking about your brain, here) one would expect a more of a 'spot on' type of person to be handling your arrangements--and at an institution such as John Hopkins, I think you're right to be looking at that person in a questionable manner !
Once you're able to get into John Hopkins and once you feel they've got a handle on your particular situation (surgery/procedure)...I'd jot off more then a complaint to the administrators of John hopkins about this--I don't think you're wrong at all to be a bit irritated !
I know they do have a fantastic reputation for their abilities (their surgeons, etc)--evidently their hired help might be more then a little over whelmed though ! Best of luck to you Trish,
Hi Trish...sometimes phone calls, mail, emails, etc., don't seem to work in this day...surprising, but true...if I were you I would take a few breaths...and go to my appointment and see how you feel in person with all of these people...if there is still confusion, then you have the choice to get another opinion...but there is a chance you will feel much better after you met the Doctors...if you are still uncomfortable with this women...tell your Doctors...and why? You need to feel good about you, your decision, your Doctors and your facility...Gotcha in my Thoughts and sending a prayer your way ~ Colleen
Thank you Janet. Since she is the only contact I have, it has put a lot of stress on me about this. I hope that I don't get there just to have them say I needed to have "this or that" and cannot be treated now. That is what I am most afraid of. I just got the rx for the plavix and aspirin, and hope that I will be on it long enough to have the angiogram on Tuesday.
Because she has become so defensive, I imagine that it isn't just my case she is struggling to coordinate. I am thankful my husband is going with me to get me thru this.
Vicki, I AM grateful and I know this is a fabulous hospital, but right now, this coordinator has put a lot more stress on the situation, as if having an aneurysm is not enough! :) I am not a person who requires a lot of hand holding or babying. And, I am not demanding or rude. That is why it went to the very last minute to finally start realizing that she is not getting me the instructions, rx, and info that was promised 2 weeks ago. Perhaps this was my fault.
Oh well, leaving in the morning, hoping and praying for the best.
Trish, of course you are scared, who wouldn't be, that is completely normal. But, scared doesn't have to mean stupid or you give your power away to others - you are an expert on you!!! Know that you are going to the best of the best.
I have not had brain surgery, it's my daughter who will be going through this, but I have had some major, scary surgeries so I do understand that part of it. Just a few suggestions, breathe deeply often (when we're scared we do shallow breathing,) ask as many questions as you want and if you don't understand make them explain it until you do - they forget we are not medical experts. When anyone comes up to you make sure they identify themselves - even the nurses, ask their names and who they are. Everyone looks the same, no identifying garments anymore - even the painters wear scrubs of some sort. They don't mean to be rude or thoughtless, it's just that they are so busy and everything is routine to them - we are the scared ones. Remember, they have a whole protocol established for your surgery; nothing will be done to you until all the t's are crossed and the i's dotted - you have to be totally cleared so try not to worry about blood tests, etc. they will take care of all that when you get there, but, again, ask questions, ask questions, ask questions and make sure you get the answers you need,
Believe that all will be well, your surgery will go perfectly, your recovery will be smooth and soon this will all be behind you. We will be looking forward to hearing about it all.
If you are truly anxious, have them give you something, they can do that and it will take the scaries away.
You might take some time to visit this websites chat room, there are so many people that chat on there that have gone thru this surgery and survived. I think it might help you with your concerns and anxiety about your upcoming surgery. They might seem like a close knit group of people, many of them are elderly or alone, and have been disabled from this disease, but once you watch them they are really informative and helpful. I know once I decide what type of surgery, and when I am in convalescing, I will sit there all day and try to forget about what happened to me. My biggest worry is getting those debilitating headaches afterwards!