All the ducks are lined up....

The day I have dreaded is fast approaching. Tomorrow, I will be admitted to the hospital and Wednesday at 8:30am, hand surgery and then the long, painful, recovery begins. I am told I will have 3 large incisions and they will take one of the tendons from my forearm and use it as a "pulley system" around a new CMC joint (otherwise known as Basal joint) at the base of my thumb. I will remain admitted to the hospital for a few days with 2 drains, IV Heparin and monitoring of my medical conditions. I will have an external pin. For 2 weeks following surgery, I will be in a soft cast and then for 4-6 weeks a hard cast. The external pin should be removed (not surgery) in his office somewhere around week 4.

The hand surgeon informed me today that the endocrinologist who was so arrogant to me last week is no longer on my case and I will be followed by a "chief attending" internist at the hospital. This doctor will manage my IV Heparin, IV Vitamin C, my port, my heart medication and everything else. Part of me is glad that I will have a day in the hospital before surgery to see how attentitive, diligent, patient, and understanding they are. If at anytime I do not feel the hospital is tending to my needs appropriately... I have time to fix it before the actual surgery. (I hope)

Thank you again everyone for your support, kind words, and patience with me during this tough time. I know that at times I have been unapproachable, irritable, tired, and unbelievably stressed out... but I am just burned out. This is surgery #62 and I feel like I do not have it in me after this past year-- to recover from another one. And a big one....

I will keep you all posted... and if per chance I cannot update because I will be 1 arm-ed, my sister, Michele will update for me.. (I guess I should ask her first.. Hey Michele... can you update for me if I need? GIGGLE)

Well... here goes...
Hugs,
Stacy

There are no words...(T-6 days)

I am not even sure where to begin with this blog but after 12 doctors appointments, 1 ER visit and an MRI...(just in 1 week) not much is resolved! As I've mentioned in previous blogs...I have a great hand surgeon but he operates out of a medical school which is not so great for someone as complicated as me. Now you would think that "new doctors", just starting out in their field after all the schooling would find someone like me fascinating but it's absolutely the opposite. I am just a waste of their time.

Tomorrow, I add a new doctor to "Team Stacy" (at my home hospital thankgoodness) ..an Electro-physiologist because apparently there are issues with my heart now. Lovely huh? I will know more tomorrow after seeing the doctor before I report what the problem is.

Uncle Mickey and I spent about 12 hours in 2 days at various doctor's offices trying to make a "Team B" for me while I will be admitted into the hospital next week. This proved unsuccessful -- but we finally got the arrogant endocrinologist who thought I was "below what he does" to agree to administer my IV Vitamin C... so important and imperitive for my healing. Actually, he will send his FELLOW to follow me. He is too important for trival things like me!

I am left dangling for who will be taking care of administering my IV Heparin. The hand surgeon, although an MD....and although he could get direct orders from my hematologist that I see regularly, does not feel comfortable writing orders for Heparin. I could write the orders frankly, I know exactly what needs to be done-- it really is not that complicated people...I'm more complicated than the orders are!

Usually when I find out I need surgery, it is unfortunate but expected with me so I have 4 phases to prepare myself. Right now, I would be in phase 4 because I am supposedly being admitted on Tuesday (for surgery on Wednesday) however, I am worried about all different things now. Usually, I worry about the recovery, pain, pins, casts, therapies etc. But for this surgery, I'm worried about living through it. About getting my meds dosed correctly, about doctors not re-writing orders because "who gets Heparin so soon after surgery?" I am petrified. So I am not really sure what phase I am in.. I just know it is not a good one.

I am trying to just resign myself to accept whatever happens. I can tell you though, this will be the FIRST and LAST time I have surgery at University Hospital in Newark! (Associated with UMDNJ medical school)

Lastly.... I appreciate so much the support of my family and friends. Please understand that some of you will want to visit me after the surgery in the hospital. I am really asking for no visitors. Those close to me or those who would like, you can get my cellphone number..others can follow me through the blog. Really, please understand this is very difficult for me... I appreciate your thought and care, but please respect my wishes. Thank you!

Will keep you posted...
Stacy

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