"Just live with it..."

Dear Doctors...
Feel free to put a Hickman power port surgically into your chest and keep it there indefinitely. Then, when you tell me it is hurting you terribly I will tell you to "live with it..." Let me know how that feels and then tell me how you would handle it better than I am?!

Thanks, Stacy

The long...overdue..update...

First let me say that I apologize for not updating my blog sooner. Adjusting back to full time work, then 3 hours of PT/OT after work 4xs a week has taken some toll on me. It is great to be back into a new school year. After having been out an entire year last year...so much has changed!

My recovery remains status quo. My long arm incision opens up, my surgeon wraps it for a few weeks and then it closes. And then it will open up again... this recovery will be very long. Next week I will be starting Kenalog injection shots into the scar as well as laser treatments because I've formed a large keloid over part of the incision and if that is not broken up soon...I will not regain normal function of my wrist or arm! I hope this doesn't break my scar down so much that the whole thing unravels.

During some recent vitamin blood tests that I had, it was determined that I am lacking a lot more than just Vitamin C in my body. My doctor told me it is "unheard of " to have "no traces of ..." Vitamin B1 in my body. He said that just does not happen with a woman in the USA. Well...you're looking at her! (Great.....) I got Zinc, Vitamin B1, and Vitamin B12 shots at his office and we are hoping that boosts me up some. He did say that Vitamin C is not abosorbed unless B1 is present in the body so maybe that's been my problem? And why has it taken since 1999 to figure this out!?

My port is going to need to be re-evaluated soon. There has to be a better way of administering Vitmain C into my body than via this Hickman port in my chest. Ports just are not meant to be in for life. I have 2 lumps that are painful and growning around the port in my chest. My Vascular surgeon is not sure what it is...I will probably need another venagram under anesthesia within the near future to assess what they are.

It looks unfortunate although true that the Dr. at John's Hopkins has once again dropped off the face of the earth. This is the second and LAST time I will be going there (hear that Uncle Mickey) to have my hopes raised with his "I really want to help you antics" and then he disappears with not a trace of help. I recently emailed him and he said, "I will look into it for you..." and I never heard back. Very upsetting and frustrating to have hopes so high and than dashed. I'm over it.. I'm over him!

Baby Andrew continues to do well at home! He's growing, happy, and so much fun!

To be continued...
Stacy

Wrist and Rehab...

The pins are out, the casts are off.. I am splinted but I have started my therapy with outpatient occupational therapy at Kessler Institute for Rehabilitation in West Orange..where I was inpatient for so long last year .

I have had years and years of PT (Physical therapy) and OT (Occupational therapy) and this is on my top 3 of pain induced therapies! And they are only moving my fingers. (Although my surgeon wrote the new script for them to do much more...) It is going to be a long, long, recovery. A small part of my large incision recently opened which is a real big healing issue with me. To the typical person it looks like a little 'boo boo' but we know that I'm not typical! I'm praying it heals with some silver-nitrate sticks (Ouch) and compression from the splint I have. I see my surgeon again on Monday to make sure I am on the right track!

With regards to John's Hopkins. I'm less optomistic that something will be accomplished being that I have left numerous messages the last 2 weeks regarding a fax and have not heard back as of yet. It is concerning that it is so hard to reach a secretary-- I hope it wasn't all for nothing . ( But that would be my luck!)

Baby Andrew remains hospitalized at CHOP (Children's Hospital of Philidelphia) with a ND tube going into his nose down into his intestines for feedings. It has been determined that he will have surgery in the near future called a "fundoplasty." They are doing this type of surgery because it is his best hope for thriving, gaining weight and growing. HE will also have an abdominal feeding tube placed for a while until he can take everything by mouth and his little stomach can tolerate liquids. Michele and David have stayed in Philly so Sarah is living with me and she's been a pleasure. Night times are hard because she really misses her parents, bed, and her dogs but she's a trooper and I'm treating her to a real good time here! (Pool at my house, TV in her room etc..)

To be continued...
Stacy

The ball is in his court....(My visit to John's Hopkins!)

This is how we felt after our day!

This is how we felt just before seeing the doctors on the first day!

Dr. Sack, my personal 'Dr. House'.. on the 2nd day!

On Tuesday, Uncle Mickey and I road tripped down to Baltimore, Maryland to see a top "complicated medical problems' doctor/researcher who made an appointment for me to see a specialized Gastroenterologist as well while I was down there. The plan was that they would review and discuss with me the specialized CT scan of my abdomen with a special small bowel enterography, that I had up here in New Jersey, to define whether or not I have a true Mal-absorption problem causing my complicated and rare deficiencies. When we got to Baltimore and had our first appointment with the GI (Gastroenterologist) coincidentally the man graduated high school at Livingston High school with my mother! (Class of 1965!) How 'small-world' is that!? The doctor although amazed with my complicated medical history and my review of systems that we discussed... he needed more information to make a diagnosis or speculation as to what might be my problems. When he was reviewing the specialized CT scan that I had just had done, it was brought to our attention that the radiologist (who shall remain nameless) read the scan incompletely and forgot to write about the "small bowel enterography" part.. the entire reason I had the test!! We left the GI doctor and headed upstairs to see Dr. Sack who I was to see directly afterwards and as we were walking out of the office the GI's secretary told me the secretary for Dr. Sack the "reason" we went down to John's Hopkins in the first place was on the phone. I guess Uncle Mickey got the hint to take the phone from me when I completely melted down in hallway yelling, "What do you mean the doctor left without seeing me!?!?!?!" It turns out that the secretary made a HUGE mistake and did not call to tell me that since the CT scan report was incomplete Dr. Sack did not have anything to offer me. Welllllllllllll, that just was not going to fly. Uncle Mickey (a doctor himself) took off 2 days of work, the emotional and nervous, anxiety (not to mention I am still in quit a bit of pain from my two recent major hand surgeries) and the 3 hour drive to see this man and he wasn't there!? Left? Just like that? Unacceptable!!

The next 2 hours , Uncle Mickey and I got into the car and drove from hotel to hotel, calling hotel after hotel looking for a place to stay for the night since we were told that Dr. Sack PROMISED to see me the next day (Wednesday).... we weren't very confident that was going to happen but decided to resign ourselves to believing they would not stand us up 2 days in a row. Finally, a Hyatt Regency on the Harbor had 2 rooms available and we grabbed them! (Due to a few conventions and the baseball game, most hotels had zero rooms available)

Thank goodness for Uncle Mickey.. he calmed me down, we relaxed for a few minutes in our rooms and then decided to make the best of a night...Uncle and Niece in Maryland. We went to a nice steak restaurant and I was so proud that Uncle Mickey was able to eat Fillet Mignon (for those of you who do not know.. Uncle Mickey recently had Lap Band surgery and is doing an amazing job! He also has a blog that some might find inspiring and helpful : http://michaelwasfat.blogspot.com/ if you would like to follow him!) After a relaxing dinner, we decided to walk around the Harbor. We saw hotels, boats, there was music and it was a really nice night out to just walk around, listen to the music, and have some bonding time! (Which I always love with Uncle Mickey)

The next day, we awoke and I was able to get us both a free Continental breakfast because when they know you are a "John's Hopkins Patient..." You get a Free breakfast which was nice and then we trekked over to see Dr. Sack. Nervously we awaited and after fighting some more with radiologists over the phone, we never did get the true reading of the CT scan but Dr. Sack agreed to see me anyway. Since Wednesday was not a clinic day for him, he had to rent space for the appointment in a Neurologist's office in a different area of the hospital. He spent over 2 hours with us, he has a great respect for me and could not believe how much I had been through since he last saw me. He was impressed with my comprehensive medical history when he questioned me and gave me the most thorough medical exam I have ever gotten from any medical doctor locally. Unfortunately, though, he needs more research, information, and time to determine any outcome for me. I left there feeling the same way I did 2 years ago, and although it was a good appointment and nice to talk to him and update him, I cannot get excited or hopeful until I see some movement from him. The ball is now in his court! He needs to produce answers for us... I just hope those answers come..and they are good.

After the appointment, Uncle Mickey drove the 3 hours home and again, I thank him publicly for his time, commitment to me, dedication, and advocacy. Really... without him none of this would be possible. I hope you know how valued you are in my life.. (and if you do not, go to my notes and re-read your poem..GIGGLE)

Last but NOT least...My poor 10 week old Nephew, Andrew, is having a real tough time. He has spent the last 3 weeks in the hospital due to (we are not sure what) but he's continuing to lose weight. After an NG tube, a brovaic port in his little chest and numerous tests a decision has been made to transfer him to CHOP (Children's Hospital of Philadelphia) tomorrow. After an MRA was done, there is reason to believe he may have some narrowing of his aorta and he needs an Angiogram to determine if this is true, the severity and the route to fix it. Prayers for this little guy and his family to get through. My sister Michele... unbelievably stayed all 3 weeks inpatient with Andrew and David and their 8 year old Sarah also there every step of the way. They are the strongest family I know and they will get through this.. We are all behind you guys...and LOVE you!!

To be continued...

Stacy

The surgerie.....s

I must apologize for the extended delay between entries however when you hear what has been going on the last month... You will better understand why it took me some time to type. I am using my iPad to update this blog because I am unable to type sufficiently on my laptop due to the immobility of my right hand and arm.

I must start by saying that you are all aware that a HUGE fear of mine before this hand surgery was the "team" that would follow me at the hospital. I wanted everyone to know that I was taken care of very well. My medical students ( hi to those "trolls and elves" who are reading this :) ), the Residents, and Attendings were all careful, attentive, extremely patient and nice with me. I was reassured when I was nervous and I was taken seriously. (If only my surgeon took me seriously... Well- I will get to that part in a bit).

I had successful CMC joint Arthroplasty. The pins were in place nicely, I was hospitalized for 6 days after the surgery to ensure no complications would arise. I am on high doses of blood thinners due to my clot disorder so a fine balance of blood thinners needed to be administered to make sure I did not bleed into my arm. Everything was on track and I left the hospital in a lot of pain (to be expected) but in good condition. I was discharged on a Sunday and I was to follow up with my surgeon the next day in his office. I just wanted to add a side note. For those of you who do not know me...I know my body VERY well! I have self diagnosed , DVTs, PEs, bleeding into joints, hands, and infections. I am rarely wrong...

When I saw my hand surgeon the next day...I knew something was not right. I had a lot of pressure building up in various places in my arm, significant bruising had started, but mostly the pain- it was intolerable. Yet when I presented to my surgeon, he said "I was fine... It is all normal, Stacy...do not worry" and I was resplinted and to go back in a week. During the week, I was progressively feeling worse. The pain was unmanageable so I called my hand surgeon's office Tuesday, Wednesday, Thursday, and Friday finally getting a call back from his sorry-to-say incompetent PA who told me he would discuss my concerns with my surgeon and someone would call me back. Well, by 8pm Friday night when I did not hear back from anyone, I decided to go to my local emergency room. (I had seen other doctors during the week...plastic knee surgeon, hematologist, regular knee surgeon) all of whom did not feel comfortable unwrapping this huge splint on my arm and told me to reach out to my hand surgeon! At the Emergency Room- immediately when they unwrapped my arm (I will spare you the pictures but I sure have a lot of them) I knew ut oh- I am going to need surgery to fix this. They rushed me into a Doppler ultrasound but when the tech said, "There is too much blood to see anything" my only thought was wondering if my Brother-in-Law, David, was going to be my ambulance driver.

Unfortunately, due to a case of the surgeon not listening to his patient...I had to have emergency surgery ... In the middle of the night (1:00am) for Compartment Syndrome. This is a very serious complication that if left untreated can lead to amputation. (Feel free too google it for a more comprehensive definition if you would like). After I was transferred back to the hospital that my surgeon operates out of at UMDNJ, and as I am being prepped faster than I have ever been prepped before for surgery.... My surgeon wheeled me into surgery telling me how I ruined a nice dinner at a restuarant he was at with his wife and how his secretary said she did not get my 5+ messages. Oh and he hoped I would not suffer any permanent damage in my arm..and then I was out.

7:45am, I was in my hospital room and was comforted by the familiar faces of my same medical students, residents....and attending doctors (The Trolls and Elves) who all felt so badly for me but I think they also had a new appreciation that my worrying about complications was not for nothing. ( right guys??). This new surgery left me with the most painful incision extending forearm side from the middle of my palm all the way down my arm to just above my elbow. There are 178 stitches. ( inside and outside combined) don't forget the 2 pins I still have in place from surgery #1. Due to my lack of Vitamin C Absorbtion (remember I have a port in my chest for daily IV infusions )... Healing this incision will be challenging for my body. I was hospialized for 10 days following the Compartment Syndrome surgery. During that hospitalization, it became July 1 which is the switching day for people who are in medical school and who are Resident doctors. I lost my most favorite medical students and residents who knew me, cared for me and understood the fragility of my situation. It was hard to have to re-teach new people about Stacy! And it definitely was a challenge the next few days until I was discharged.

To date: I have had 1 post- op visit and so far the surgeon is pleased. I am under poor pain control. It is debilitating. Usually when I have huge surgeries (such as the 3 knee replacements) I would go directly in-patient to Kessler Institute where pain is managed better acutely after surgery. This time, I came right home. It has been difficult to say the least. I remain in a splint that is non- removable and a sling 24 hours a day. I am still facing 8-12 weeks of a hard cast but I need all of the stitches out first ... This complication set me back about 1 month. I am facing a serious amount of Occupational Therapy to regain strength, mobility and function to be able to use my arm and hand again. I see my surgeon on Wednesday- I am praying everything is ok... I am so worried!

Hopefully the rest of this recovery will go smoothly. It is so upsetting that this could have been avoided had my surgeon just listened to me. I am praying for no permanent damage in the muscles, nerves, and tendons that were cut so emergently in the arm or hand...

On a different note, I will hopefully be going to Johns Hopkins to see Dr. Sack for a specialized CT scan next week. Perhaps there will be some answers to my extreme, unhealthy, weight loss , Vitamin malabsoption problem, and my general deteriorating condition. Someone has to have answers for me right??

As I end this blog...here is a quote that I recently heard..." If you are feeling blue, make it a bright blue..."

I am trying so hard not to give up....Good thing blue is my favorite color!

To be continued....
Stacy

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

New Baby, Ed's in town, the 10 day forecast and 3 months home!

Baby Andrew 8 days old!

Stacy and Andrew

My brother, Edward, and Me!


Michele holding her new baby boy!

**Andrew Noah Littman**

7 pounds 10 oz, 20 inches long!

And...HEALTHY!!

I have been home for 3 months!!

So much has happened since I last updated my blog! I am a proud Aunt (again) of a beautiful, healthy, Nephew! Andrew Noah was born on May 19th and he is a miracle baby in addition to having brought such happiness into this family! Congratulations to Michele for baking this baby for as long as she did and to David and Sarah for their new precious addition to their family!

What a nice pleasure it has been to have my brother, Edward, here from California for a month...staying with me! He and I are very close and it is so nice to have the company in the house and to spend so much time with him. Ed lives in California so it is not often we can catch up and have quality bonding time! Fortunately for him, I cannot drive yet so he gets to use my car and the pool is open so it is like a full resort for a guest who stays here! Love having you here, Ed... I will miss you when you leave!

I would like to say that my health is great and that I am on the road to complete recovery however that would be to easy for Stacy. Does it ever work that easy for Stacy? No! I have added a new "ist" doctor to my list and I now see a urologist. I will spare you all the details as to why I am now seeing a urologist but ... I will be having a cystoscopy on Thursday and I am hoping it all turns out OK because I am just about on the 10 day 'forecast" for my hand surgery. (if you are not familiar with the forecast reference, see previous blog entry entitled weather forecast) and it explains it all!

Like I mentioned in my previous blog entries, I am so worried that the "team" that needs to be put together at UMDNJ has not been established yet. None of my doctors have heard from any UMDNJ doctors, or my hand surgeon and that concerns me a lot. The recovery period after my CMC joint reconstruction that I will be having is so important to my healing-- if one mistake is made it can make or break my healing ... or my life. I am so worried. This week starts my WEEK of pre-admission testing for surgery. I need cardiac workups, gastrointestinal workups, urologist workups, endocrinologist clearance, and last but not least I need my internist to clear me. ( But Dr. Bulan will clear me... right?? wink wink)

A teensy weensy part of my knee surgery incision from this summer's surgery has re-opened. We caught it early enough and the surgeon re-bandaged it with an Unna Boot dressing...so I hope when he removes it Wednesday, it will be healed.

If there is anyone out there that knows about Vitamin C deficiency, or knows someone who does know about this rare condition (that requires a port in my chest and 2 1/2 hours of IV vitamin C every night) I would be forever grateful if you could help me! It is so hard to be bounced around and I just cannot accept that this will be my life forever.

Check back here on Wednesday, after I see my hand surgeon but as of now....

Surgery is Friday, June 10th. I will be at UMDNJ in Newark, NJ for "supposedly" 3-5 days!

To be continued...

Stacy

Surgery on the Horizon

So much has happened in the last month. And so much is going to happen in the coming month! Unfortunately, we lost a great man in our family. My Uncle David passed away (My dad's brother-in-law). This man had strength that nobody I know ever had...with the numbers tattooed on his arm from the concentration camps, it was always known that we were not to discuss with Uncle David his story. I wish I had known his story...but I did find out that he was a survivor of 11 concentration camps. What strength! He will be missed.

Michele is having a baby on Thursday! It is truly amazing and she did a great job baking this baby in a complicated, high-risk "oven!" If all goes as planned, I will have a little Nephew on Thursday, May 12, 2011!

I am so proud of Uncle Mickey! He made the most amazing, brave, decision to have lap band surgery and he did not get cold feet! (I would not let him!) He came out of surgery well today and his new life and lifestyles will lead him to a healthier way of life!

Now...for Me. I am still battling with 'hospitalitis'... maybe a little bit better since I got some flowers. Although I have lost now close to 60 pounds, and I look great, I am not losing it the right way so the doctors are trying to figure out what's wrong with me. They better work fast... I unfortunately need surgery on my wrist which will take place on Friday, June 10th. I do not think I have ever had surgery on a Friday before. It is taking place in a different hospital than my "team Stacy" doctors practice so a whole new team of doctors need to be put together for me before I can have an operation in another hospital. My post-operative plan is what will make or break my recovery so it needs to be clear to these new doctors what needs to take place. Frankly, it petrifies me... however, there is not a local doctor at my hospital that deals with the "complicated..." Did you all know that I am complicated? Do you know how many doctors have called me complicated? A lot! It is not a great feeling... nor does it leave me much hope, but my hand surgeon, Dr. Capo, is a great surgeon who came highly recommended and I have faith he can fix my hand/wrist. (I hope!)

For those of you who do not know...I have a blood clot disorder. For that reason, I am on blood thinners for life. January 2009, I was diagnosed with 2 pulmonary embolisms in my left lung and a subclavian blood clot on the blood thinner Coumadin. This is why I remain on the blood thinner Lovenox which is an injection in my belly nightly for life. I received a letter from my insurance company telling me that I need to take anti-inflammatories before they would OK a MRI before my hand surgery! Due to my being on Lovenox and my blood clot disorder, I am not allowed to take ANY anti-inflammatory medicines ..nothing! Even as much as 1 Advil can be detrimental to my health. It remains very frustrating that the underwriting doctors at these insurance companies do not pay attention to the medications that I take. See, I have a complex case manager (because I'm complicated) and she knows all of my medications....she is a nurse!

I did call the insurance company back and I informed them that If I take
anti-inflammatory medications they will be responsible for paying for my funeral. I think they got the hint!

To be continued...
Stacy

10 weeks and it feels harder than ever!

I have now been home just about 10 weeks and I cannot seem to get over the "hospitalitis" that I have. I know a lot of it has to do with not being able to drive and being alone all day, every day....on the days that I have a doctor appointment or physical therapy I get out a little bit but that's it.

Michele is due to have her baby any week (I think within the next 2 weeks) and I feel 'trapped!' I will not be able to just go to the hospital to see them when I want to or just go to her house when I feel like it. I will need to arrange transportation, I will need to impose on family to take me to and from. I feel badly about it on many different levels!

Perhaps as the weather turns nicer and I can maybe crutch outside...or when the pool opens and I can float in my raft, or I get my flowers, I will be more motivated. I know a lot of my lack of motivation and 'burned out feeling' is that I am still facing surgery-- which needs to happen sooner than later. I am trying to arrange it around when Michele has the baby. Right now so as not to miss the birth, and his first few weeks maybe I can have the surgery the beginning of June. Just thinking about needing anesthesia, stitches, pins, casts, and more hospital makes me weak and tired.

I had hoped that by now I would have been more adjusted to being home. I know it is not abnormal for what I have been through to feel this way. After all who spends 8 months away from home in a hospital setting? I need to just re-program myself to actually living life. However, it is much harder than it sounds.

It is tough, I am working hard, I just wish I felt better.

To be continued...
Stacy

5 weeks home and fish fiasco.

So, I have now been home for 5 weeks. My procedure at the hospital last week went well. Luckily, there was no damage to my Hickman catheter port in my chest just a lot of inflammation in the vein from running the IV to fast and the IV push I accidentially gave myself of the Vitamin C. This could take weeks to resolve, or I could be in pain forever from it. Just something I will need to learn to live with. But, very happy nonetheless that it did not need to be replaced and there was no surgery involved with that procedure!

On Monday night, I had a fish fisco like I have never experienced before! I have a 46 gallon fishtank that started leaking all of it's water onto the floor. Before I noticed it, it must have been a good 10-15 gallons already draining from the tank. Panic set in because I had NO idea what to do and this all happened at 1AM in the morning so I could not contact my fishtank cleaners, the Aquaholics (who are amazing!) Thank goodness for battery pack airpumps and a 5 gallon bucket. I took all my fish out and put them into the bucket to live until I could find a new fishtank. The only problem was, that my fishtank has been discontinued ....so it was just by luck and chance I found 1 last "floor model" at PETSMART. Thank you to my mom who took me to the store to buy it. I was so worried about my 12 year old Silver Dollar fish that I did not sleep for 2 nights checking on him, the battery pump and I was so anxious to get the new tank set up. Above are pictures. The top picture is one of my new tank that the Aquaholics set up. The second picture is me trying to "go fishing" in my old, draining fishtank for my fish to put in the bucket. And the last picture is the rediculous mess the leakage caused and you can see how low the water line was getting....very fast. I am happy to report that the fish transition went well. My silver dollar fish lived (so far ) and he ate today for the first time and I saw him swim across the tank instead of sit on the rocks like he had been doing since he was put into my new tank. For those of you who do not know me well. I have had a fish tank my whole life. I love my fish!

Regarding my health... Motivation is such a hard thing to work on for me. Whether it be physical therapy (i've been in PT for so many years), or eating/drinking ...which I still am having a hard time with...I know these things need to be done but they are hard for me to do. I continue to push myself daily to get up and not just lay around ...especially when I have no therapy or doctors appointments on certain days. Regarding my hand, I am status quo at this point until I see my hand surgeon on April 18th to decide when the surgery will be. I am leaning more towards after Michele's baby is born but before June because I need to be ready to go back to teaching in September and the recovery after surgery will be extensive. I continue working very hard in physical therapy to get off of this walker and onto 1 crutch. I realize now that the cast is off my arm that the pain is not bearable and something I can not just "live with". It needs to be fixed.

Again, thank you to my Dad who takes me to and from therapy 3xs a week and Uncle Mickey who was my doctor taxi the last week when I had all my appointments.

Happy Birthday to Aunt Eileen and Sarah lost another tooth!

To be continued....

Love, Stacy

3 weeks home!

I'm happy to report that I have now been home for 3 weeks and I've managed to stay home with little complication! Transitionally, I'm feeling a little bit stronger each day but continued work is necessary to get my motivation up to par regarding eating/drinking and finding things to keep me busy each day when I don't have a doctors appointment or physical therapy. I have been reading some, when concentration allows!

I saw a lot of surgeons this week (Thank you again, Uncle Mickey for being my doctor shuttle) The hand surgeon removed my cast...for the first time since December 2009. (well actually I did have it off for 4 weeks in between then and now) but I don't recall that period much! It is looking like I will need hand surgery similar to what I had on the left hand. CMC or basal joint reconstruction at the base of my thumb. Uncle Mickey and I both felt reassured that my hand surgeon (although not at "my hospital") was willing to work with us and listen to the usual plan to get me through surgery. More of a decision will be made when see him again in 4 weeks.

Yesterday, I saw both knee surgeons. Dr. Salas, the plastic surgeon who did both complicated Z-plasty scar revision surgeries on me this summer, was so pleased he said I don't have to go back to him for 3 months!! I cannot remember ever being on the "3 month plan" with a surgeon before! This is very good news. It means he continues to be happy with my skin, the way it is healing, and even having had started the process of physical therapy....things seem to be "Staying together..." which for me, is a great accomplishment!

Last but not least for my surgeons of the week, I saw Dr. Rosa my knee surgeon. I have been a patient of Dr. Rosa's since 1996 and he has done very many surgical procedures on me. He was happy with my progress (this is only the 2nd time I've seen him since he operated on me in July) however would like my knees to bend more. I reassured him that I am working hard and the progress that I have made in the last 3 weeks has been huge-- so he seemed happy by it. There is scar tissue rolling around in there causing "grinding" and "flapping" but we will pray this all breaks itself up since I won't EVER have it fixed!

Next week, Tuesday, I go under anesthesia to have my port assessed with a venogram and possible surgery to fix whatever damage there may be with the vein that the hickman catheter/port goes into. The port vein leads directly to my heart so any mishap, mistake, or complication could be detrimental to my health. I must be very careful when infusing at home....and hospitals must be very careful when administering the IV that the numbers on the IV pump are correct so ensure no problems. Unfortunately, there just are not many places for this port to go if the vein is damaged. So,we will see what my vascular surgeon (Dr. Addis) discovers during Tuesdays procedure....and pray that it is fixable.

All in all it has been a good 3 weeks at home. I met my new baby cousin from Maryland, Michele had a surprise 40th Birthday party for David, I had lunch at the Ritz Diner with Uncle Mickey and Eileen, and I made it to temple service with my mom and Michele....I just wish I did not have to rely so much on people to take me places and that I could be less of an imposition!

Thank you for your continued support...(you know who you are...)

To be continued....
Stacy

The first 2 weeks....

So it has been just about been 2 weeks that I have been home from my very long stay at the hospital and Kessler Institute for Rehabilitation (inpatient). Although I'm so happy to be home, the transition has not been the easiest. Learning to do things completely for myself by myself has been hard as well as finding motivation to get up and move and my continual lack of desire to eat ...which as we all know can cause more problems that I do NOT need!

I have started outpatient physical therapy and I am doing well. We are taking it slowly to ensure no complications...yet I am working hard so that I can get moving as soon as possible. I currently still walk with the platform walker..which works great on smooth surfaces but not so much on the pavement outside!

In the next 2 weeks I see all of my surgeons. (Vascular, hand, knee, plastic surgeon who did my Z-plasty knee surgeries this summer) I hope that I get all good reports and that maybe the hand surgeon will remove this cast for a few weeks to give my arm and skin a break... It has been casted for more than a year!

I had the extreme pleasure of accompanying Michele and David to their baby-ultrasound doctor appointment which was a huge highlight for me. It is amazing that there is a live being inside the belly of my identical twin....and my Nephew is quite active and the doctors are happy with her progress and his development. About 10 more weeks to go for her before he is here!

My dogs have probably been the happiest that I am home and that I actually stayed home, this time! They have been attatched to me with paws, tails, or noses at all times...I love it!

Thank you to everyone in my family... Dad, David, Mom, and Uncle Mickey for taking me to doctors appointments, physical therapy, and the hospital for tests. I know it's an interruption in your day to have to take me but it is greatly appreciated as always!

Lastly..throughout this whole process... you really find out who your true friends and family are. Who really cares about you in your time of need and it was a rude awakening for me to see how many family members just don't care. With that said, I have a huge support system with immediate family and friends (you all know who you are) but it's sad...when you think about it. Just be happy this is not you... but if it were you, I would have been there for you all!

I am happy to be home and will continue to update about my progress...

To be continued...

Stacy

Home Sweet Home

It's hard to believe that I did actually make it home today, Wednesday, February 23rd. Exactly 8 months to the day since the first of my latest hospitalizations and this medical mess began. As Uncle Mickey put it best... I missed 3 seasons!

I feel so much better than the first attempt at being home on January 3rd. My spirits are better, my legs are stronger and for starters I can walk to the bathroom with the walker and I'm not wheelchair bound in a house that cannot accomodate a wheelchair! I am taking it easy....yet being careful not to fall into the habit of just laying in bed. 21 hours of my day at Kessler was spent laying in a hospital bed. Needless to say my endurance is real low but each day I will try to sit up and build my strength.

Tomorrow, I start outpatient physical therapy. My therapist has worked with me for quite some time yet I'm so hesitant and nervous to start this new chapter of my recovery. I suppose the real work now begins and I worry for complications.

Thank you (ahead of time) to anybody who may be a part of the "schlepping" Stacy to doctors appointments, physical therapy, or the hospital. You know who you are and I greatly appreciate the transporation rides.... for I would give anything to be able to take myself but it will be quite some time before I can drive again.

So, as I end this update, let me just say...although this has been a very long, painful, frustrating 8 months, I learned a lot. I learned a lot about myself and how much strength, determination, motivation and perserverence I have. I learned how thankful I am that although I have such a complicated medical history and I am facing more surgeries in my future and I have serious chronic medical issues that will last my lifetime...I will recover. I will go back to teaching. I will walk again. So many people I met along this journey will never have those options... will never talk or smile again. So I would like you all to know that I feel rather greatful right now because I learned and witnessed that it could be so much worse...

Last but not least... I would like to say a huge thank you to my Dad. My dad, a very quiet, hard to read emotion-wise man... visited me just about every day, twice a day throughout this entire ordeal. Whether it be at the hospital or at Kessler, he was there. A quick wave to make sure his daughter was ok... Thanks Dad for being so devoted. I appreciate your effort to see me twice a day and I love you!!

Thanks for reading,
To be continued.....

"Doctor Departo..."

As I type this entry.. I have finished my therapies for the day. I had my first (of I hope many ) huge accomplishments today. For the first time since June, I was able to independently stand up from the therapy mat!! Just myself and the walker - no hands or help from a physical therapist, no verbal cues... I just used all of my strength and stood up! My regular "mean" physical therapist has been away for the week-- hopefully he will also acknowledge this great accomplishment!

Last week,at the hand surgeon, as Uncle Mickey and I were watching the medical student wrap layer after layer of fiberglass on my arm for my new cast, we contemplated having them cut the whole thing off and restart because it was done so incorrectly. I thought I would be able to deal with the uncomfortableness for 6 weeks but Kessler actually fixed some of it with their cast saw. It's maybe 10% better- we will see if I can deal with it for 5 more weeks!

I've neglected to mention in previous posts that Kessler does offer art therapy. I wouldn't be telling the truth if I tell you that I thought that I would have ended up enjoying this past time as much as I do. The art therapist, Chris, is an amazing artist, patient with me ( as some of you may know I do not take after my dad's artistic skills) and the art helps at least provide temporary distractions from this medical hell. I've done work with clay, painting, mosaic tials, coloring, and more. I look forward to the days Kessler offers this service!

Lastly..."Dr. Departo"... Due to the fact that many of the brain injured patients on my floor try to escape because they are disoriented and want to leave... They wear ankle monitoring bracelets. If a patient with a bracelet gets too close to a door or an elevator- loudly over the intercom system notifying the whole hospital you hear, "Dr. Departo side door east" or "Dr. Departo elevator west. For the last 3 nights starting at 2am, every 5 minutes this announcement repeats itself. Just put these people back to bed.... PLEASE!!

Thanks for reading!!
To be continued...

Thanks for reading and to be continued...

The 3rd floor...

When people find out that they need to be a patient at Kessler Institute... And you have NOT suffered a traumatic brain injury... The 3rd floor is not where you want to be. Aside from the sad stories, the significant cognitive impairment, and it being a locked ward... I'm one of the only speaking people who in addition doesn't think we are living in the year 1910. Like I said- it's very sad and I do not belong up here. I am more than grateful that I am back at Kessker where I can get the appropriate care... However, I miss the first floor terribly.

I have been working so hard in therapy ... Harder than I've ever worked before and my therapists are the toughest than I've ever had. Yeah, yeah I know- this is great. It's what I need but there should be a happy medium/ a compromise. I'm talked to and treated as if I have a brain injury- I have orthopedic issues. Again- don't interpret this post as being ungrateful that I am back here- I'm not... It's just trying to deal with the lack of appropriateness for me and it is hard.

My medications are being administered appropriately, I watch out for my very impaired roomate, and I walked 35 feet with a rolling platform walker (therapist holding on of course).

My doctor here likes me a lot and is trying to find me a private room up here.

I'm working hard... Harder than I've ever worked before.

Tomorrow I see the hand surgeon for a new cast... I'm thinking blue again!

To be continued...

I'm back on the saddle again...

After 19 long, depressing days at CareOne nursing home... I'm happy to write that I'm back at Kessler Institute! Unlike previous admissions I am on the Traumatic Brain Injury floor and although it's difficult for me emotionally- my main focus now is rehabilitating me-- so I am working very hard to get back to being functional enough to go home.

Tomorrow, I see the surgeon and I'm hoping the bandage can finally be removed from my leg.

On a totally different note- for those of you who know about my "tiny" obsession with snow--- here comes another one on Thursday!!

Hopefully this is the beginning of the end of this nightmare for me...

Thanks for reading and to be continued...

Stacy

Half of 2010...

Rewind a few weeks... As I lay in Kessler Institute for Rehabilitation and I watch the Ball drop in Time Square the only thought that comes to mind was.... "is it truly possible that Ive been hospitalized for half of 2010??" It's been a while since I've written- let me fill you in...

Firstly- had anyone known how extensive my rehabilitation would have been with the 3 major knee surgeries I had June, July, and September--it's questionable whether I would have gone through with them despite my doctors telling me it was a must... Apparently the risk of losing my leg due to an infection from a non- healing wound was worse off than the 7 months it's been since I have been home.

I was immobilized with a fiberglass cast from toe to hip for 12 weeks -- then put into a soft Velcro Full leg brace for an additional 8 weeks. In the process of healing the right (surgerized knee) the left knee ( which has been healed since 2005 ) decided to open up. Unfortunately- this is something that I will continually battle with for the rest of my life because of my vitamin C deficiency. When my levels drop low- incisions- no matter how old or healed they are... they just open up. My surgeon then decided to immobilize BOTH legs in full leg braces to ensure healing. This meant no active therapy on either leg for upwards of 9 weeks! Unfortunately, my insurance company didn't want to pay the high costs of Kessler if I wasn't completely "rehabilitatable" so I was discharged on January 3rd to home.

Since I was immobilized since June- my muscles decided to take their own sweet time coming back to life so when I was home for the 20 hours --- I was bedridden....and this was not allowed by the visiting nurse who was overseeing my home care!

Which brings us where I am today. As I type this at 3:15am- I reside in CareOne nursing home in Livingston. A place nobody should have to be in -- especially someone of my age. The therapy is mediocre at best and the place is unsanitary and they are unable to care for my
complex medical needs- causing a blood clot in my port requiring the hospital to repair it..

Until my surgeon lifted ALL restrictions on both legs- I wasn't moving from this nursing home. As of Wednesday- since my surgeon got the message loud and clear and CareOne can't handle me... I'm happy to report that on Monday I will be going back to Kessler Institute for
Rehabilitation to get the appropriate therapy that I need so that I can walk and finallly go home...

7 months- gone in an instant- but all I can do is move on from here (now that I am allowed to) and I will work so hard to better myself to return home and go back to teaching... My only normalcy.

My journey continues... I will require extensive wrist surgery so I remain in a cast now for 13 months until my legs are healed enough to have my arm fixed.

I appreciate those of you who have provided endless support and caring through what has been the toughest experience of my life....