The lightbulb....

You know when they say that the light bulb goes off in your head and finally you understand something? I had the unbelievable experience of watching the light bulb go off in my hand surgeon's head (literally) during my appointment this past week. It truly was baffling and if Uncle Mickey were not there to hear and experience it with me....nobody would have believed me!

My new hand surgery date is Wednesday, June 15th because my hand surgeon finally listened to me and determined that it is not safe to operate on a Friday and then leave me with a "skeleton" staff the next few days, over a weekend, as I will be admitted after the surgery. A team is being put in place --once again it is so important that I be my own advocate (with Uncle Mickey's help) and push my team here to get doctors together at UMDNJ. (Did I mention that I continue to beg my surgeon who revised my knee incisions...Dr. Salas... and he is also a hand surgeon...and I wish he would do this surgery!!) I have TOTAL faith in Dr. Salas as he takes my complicated-ness into account, takes me seriously, has a terrific bedside manner, and I know I would end up with a fantastic looking scar. I begged and begged but, it probably is wise to stick with a trauma hand surgeon just incase something out of the ordinary happens ...which could very possibly happen with me. (G-d for bid!)

I have made appointments with an endocrinologist and an internist (hematologist pending) all at UMDNJ so that they will be fully prepared and aware of what needs to take place immediately following surgery and while I remain admitted. Needless to say, I am seriously worried (And if Dr. Salas is reading this...I will still beg when I see you on Wednesday! :) )

Friday evening, I got a phone call from my cardiologist and to paraphrase, it went as follows...: "Hi Stacy, I just reviewed the results of your 24 hour Holter Monitor and you need to go to the emergency right now immediately. Either the port in your chest is pressing on your right ventricle or something bad is happening and you need to go right now!" Well, I started laughing- but apparently it was not a joke so I rushed over to the emergency room (even Uncle Mickey came!) and....all they did was a chest x-ray and said, the placement of my filter is fine go home. Now anyone who reads this blog knows that very recently I had a venogram to check the placement of my port because I have been experiencing palpitations. It is just something I will deal with having this port. (apparently what the cardiologist saw on the monitor was more than palpitations..) I was more than happy to go home but please explain to me WHY this could not have been done on an outpatient basis?

Words cannot describe how frustrating it is when as I am being triaged and I give my medical and surgical history to doctors and nurses and they STILL require that I submit a urine specimen before any x-ray to ensure that I am not pregnant. Well folks, if I am pregnant...call Replies believe it or not AND Oprah because in 2008, I had a total abdominal hysterectomy. It is physically impossible for me to carry a child. Despite showing my incision, having doctors report it, having had a CT scan (as recently as 2 weeks ago) that clearly said "uterus not found.." it continues to be an ongoing issue with me. Not to mention the whole emotional aspect of having to repeat over and over again the story about why it needed to be removed in the first place! My point of mentioning all of this is.. I had to wait 2+ hours for 1 chest x-ray because of a urine test!

On another shocking yet exciting note... I made the decision to just call up Johns Hopkins in Maryland and make an appointment to go back to Dr. Sack the doctor who saw me 2 years ago. At the time, he had left me with a lot of hope but due to various circumstances I have not been able to go back or be in touch with him. My plan is to see him on July 12th in Maryland (Uncle Mickey will take me) so I hope this brings some kind of plan for me,my port,and for the rest of my life. I have also decided that if I need further testing, it is probably wise to have it done down there as it is difficult to have testing done in NJ without specimens being lost or having to be repeated various times .

Check back next week- I will have seen my "new team" at UMDNJ and will have all the details of the wrist surgery I am having.

To be continued,
Stacy