Post-Op Day 2 & 3: Discharged

Stapel closure

Approximately 3 A.M. on day 2 they had to switch me to injectable Dilaudid which finally got the pain under control, pain scale 8. I only had to take a couple doses of Dilaudid. The fluid flowing from my knee from the Jackson-Pratt drain was beginning to slow down. This drain removes excess fluid from the surgical site... if removed too early a hematoma could form that may necessitate reopening the surgical site. During the evening I have been using the commode that is next to my bed making things much easier.  

I'm in a lot of discomfort pain scale 6-8 and now experiencing a lot of nausea from the narcotics so they have added Reglan and Zofran to help decrease the nausea.. Note to self: eat crackers to settle tummy prior to taking narcotics I was able to take a sponge bath but I feel very weak and not well at all. I just want this day to be over.

Post-Op day 2 late afternoon,  pain level is at a 4 and it's time to get the Johnson Pratt Drain pulled. I highly recommend taking your pain medication at least a half hour before the procedure primarily to help you relax. Melissa the PA explained to me that the drain has a flat end and that is what I will feel as it exits my skin. She took off the tape that was holding the drain in place and had me look away and concentrate on a good thought. I went to my happy place that I have created in my mind. It's located in a jungle with waterfalls, beautiful foliage and butterflies (Don't laugh a famous surgical hypnotist taught me to create this place and it works well when you need to refocus). I focused on my breathing and I felt the tube sliding out which wasn't painful just weird feeling and then a a one second momentary catch of the drainage end as it was exiting the skin. It was all done within 2-3 seconds. The catch is rather intense but it's over with almost before you can process the pain. It wasn't as bad as I thought it would be.


Post-Op day 3 and I'm so excited because I'm able to go home today and I feel well prepared to do so. I have missed my husband this week. I haven't seen him since Wednesday, the day of surgery because I didn't want him to spend 1 1/2-2 hrs in rush hour traffic in order to visit me after work, and that is one way. We talked on the phone a lot and it was kind of fun because it reminded me of when we were dating and would spend hours on the phone talking about everything and nothing. I haven't been away from him this long since we started dating over three years ago. He is literally my best friend and we have done nothing but laugh for three years.

We had planned to spend the rest of our lives together and were totally committed and didn't feel the need for marriage. My health began to decline and I was unable to get health insurance so he brought up the idea of marriage. After much discussion and time we were married on September 31 of this year and have never been happier. People get married for many different reasons, but his decision to marry me knowing that I wasn't healthy holds a very special place in my heart. He is such a happy, upbeat person who I draw so much strength from. We have been through a lot in our short time together. We don't take each other for granted and the challenges that we have faced only bring us closer. I'm not more committed being married but I do feel a closer bond with him and he with I.

Time to see my husband again and go home. I took my medication shortly before my departure. Steve placed the seat as far back as possible and adjusted the back to my comfort. I slowly put my bad leg in the car first and then slowly slid the rest of my body onto the seat. I placed a pillow behind my knee for support and used a small blanket for cushioning. I filled my ice bag just before leaving and placed it on my knee. I would also recommend a large zip lock bag in case you become nauseated on the way home. I was very grateful to have these provisions in the car with me. I was taken directly home and by the time I was getting set up in bed I was totally exhausted and wanted nothing more than to lay down.

Post-Op Day 1

My journey began as an out-patient, however, once the PVNS was confirmed they had to switch to an open synovectomy which required an in-patient hospital stay. 

First post-op day I found myself in a very quiet, comfortable room filled with state of the art equipment, fully equipped with all of the amenities that a VIP would expect, however, I wasn’t a VIP. It has interactive TV which provides my personally assigned education videos, relaxation videos, cable, movies, games, internet access.  The view out the window was amazing where I could see the snow capped mountains, palms and even the fall colors of the trees. My view overlooked the entrance of the hospital displaying beautifully chiseled fountains in a zen like healing garden, a life sized metal tree and overflowing elevated ponds. At night it was beautifully illuminated. Most important was the exceptional care that I received from every member of the staff...doctors, nurses, CNA’s, laboratory personnel, dietary, PT, OT and the housekeeping staff. Everyone represented their profession in the best way possible.

After breakfast I I went with physical and occupational therapy to get cleared using crutches on the stairs, toilet, shower and such. It was a good time to do this before the block wore off. I was feeling great and wanted my surgeon to release me to home, however, she was much wiser than myself and said she couldn't discharge me with my leg still draining at 180 cc and they couldn't send me home with the drain due to the high rate of infection. I checked on the PVNS is Pants site and others where saying that they stayed at least three days when they had this procedure. The phrase that caught my attention was "wait until the block wears off." I reevaluated my status and decided to stay thank God because at about the 36 hour mark I was in excruciating pain.

I was taking Tylenol, 10 mg Oxycontin ER every 12 hrs, Oxycodone 5 mg for break thorough pain, and injectable morphine every half hour and I was still crying like a baby. My knee throbbed and burned and I would have given anything for just one minute to be pain free.  

PVNS Open Synovectomy Surgery Day

Metal Tree in Zen Healing Garden

Day One Post Surgery:  I was diagnosed with PVNS on November 7th 2011 and will have surgery 5 weeks later on December 14th. I’m scheduled to have an arthroscopic meniscal repair and biopsy of possible pvns and an open anterior synovectomy.

I was very impressed upon our arrival at the hospital for it felt like we were walking into a five star health spa. The hospital was serving a holiday meal for employees and visitors and the aroma of home cooked food filled the spacious multilevel golden domed entry. Who cares if I haven't been able to eat for the last 14 hours. The hospital is carpeted and beautifully decorated with garland and colorful decorations wrapped around the handrails of each level.

We  journeyed up to the second floor and checked into the Out Patient Surgery Unit. We arrived two hours early... which is the customary time to enroll in the hurry up and wait to get sliced and diced game.  As I looked around the elaborately decorated waiting room...I noticed some of the amenities that I was gladly paying extra for. They have a dedicated flat screen that is updated every minute to notify the families where the surgical patients are at all times in the process (pt is identified by a number).

"I'm going to be your nurse please follow me and we'll get you all set up for your surgery." My eyes kept darting around pre-op in amazement, We need to start an IV, however you look like a difficult stick so I'm going to call a technician in to use the ultrasound machine to visualize our vein, no worries she will inject an anesthetic to decrease the amount of discomfort that you may feel while we start the IV.  Man I was just thinking "I love any place that cares about how much pain I may feel from a needle stick. They must be really good in managing surgical pain." If you'd like we can give you a femoral nerve block so you don't feel the surgical pain for 24-48 hours. "Oh hell yes I want that too."  I was definitely being pampered by all who crossed my path.

I was even given a pretty purple marker to keep as a souvenir after my surgeon and I marked my surgical site together. Oops, I guess no funny stuff is supposed to be written on your surgical sight.  The surgeon showed me a pain scale chart and asked what level of pain would be acceptable after surgery. I may be blond but I can spot a trick question. "Zero!! would be the most acceptable. I just figured if this place was giving me an option, I didn't want to feel any pain. Hells yes, I'll pay extra for that.

My husband was given a pager with a read out in the center that would say for example "surgery is going well, surgery is almost over, patient is in recovery" allowing them to explore the the healing gardens and fountains on the hospital campus while I was having surgery. Time to say good bye to my sweetheart and be ushered off to the O.R.  Just when I thought every possible comfort was being given I suddenly feel a warm fuzzy surge of happy juice flowing through my body...whoosh nightie night.

"Hey when are you guys going to get started?" "Surgery is all done." But I feel great!!. Dang is that my leg. It looks like it should hurt.  Hmm? Oh I remember being given the compassion block so I wouldn't be in any more discomfort than necessary. Do you think they could make it last a week? Time to take a picture for my blog.  Just when I start thinking this has been the best surgery that I've ever experienced, I'm told I have diffuse PVNS and they had to open up my knee which is going to require me to stay the night.

I didn't realize it at the time but I am very fortunate to be in a country where the doctor can still choose what is best for their patient and It's not solely based on economics. That luxury is quickly coming to an end with the new health care bill that has been shoved up our asses. The majority of Americans said no and Obama ignored our pleas and said I'm going to do this whether you want to do this or not. Isn't that called rape?

Two Days Until Surgery

I'm so ready for all of this drama to be over. I like wearing shorts and skirts but now I'm going to have an ugly scar on my knee and I'm angry. I’m only 47 I've had over 20 surgeries and now scars on every part of my body. I'm angry that I'm going to have a huge one on my knee where everyone will be able to see it. I've learned to cover most of my scars by wearing the right kinds of clothes but in Arizona how are you supposed to hide a huge scar on the knee. I'm not vain, well maybe a little. I have a very handsome younger husband who loves me very much scars and all but sometimes I feel bad about being all scarred up. 

I know I could have the surgeon only use the arthroscope but I also know it won't provide the best chances of destroying this hideous monsters bone eating destruction long term. I don't want more surgery than is absolutely necessary, but how is one to know?  I suppose that's where trusting your surgeon comes into play. Cartoon from: klefever.blogspot.com

 I saw my primary care doc on Thursday to get my health clearance for surgery. He was very honest with me and said he really didn't know much about PVNS. I told him my take on it in the short amount of time we had. I was joking and said I was going to have a centipede tattooed on my scar. He just laughed. He's the kind of doc that everyone should have. He really cares and has very good intuition of what a patient is going through.

The good news is that I will have my back MRIs done tonight and it should rule in or out some stuff. Maybe I’ll actually find out why I went to the doctor in the first place

Appointment with Surgeon Episode 1, Part 2

My head is spinning and I'm so stressed about making the right decision. I'm fortunate that my surgeon is familiar with PVNS, however, as she put it there aren't any clear cut answers as far as over treating or under treating because everyone is so different. 

I have diffuse PVNS in my knee and already have a significant amount of arthritis. I'm scheduled for surgery next Wednesday and have some big decisions to make. This will be the first and hopefully the last surgery.  Dr. D will begin surgery arthroscopically...take a frozen section for biopsy.

If confirmed to be PVNS the surgeon needs to know beforehand how aggressively I want to her to treat it. Continue with the arthroscope or revert to an open synovectomy. Post surgery she will have me speak with an oncologist radiologist. 

Dr. D looked over my chest ct with me. She just said “no, don’t go there. It would be so incredibly rare for it to show up in your lungs.” What ever is in my lungs grew in the last month and is now involving the lymph nodes in the mediastium... they will take another ct of the lungs in 3 months. I’m still trying to get authorization from insurance for my thoracic and lumbar spine MRI to help them figure out why I have so much back/flank pain. Hopefully not PVNS.  

When a person starts aging they require more tests to make sure your healthy enough to survive surgery. Personally I think all of the tests are to cover the anesthesiologists butt. It would be cheaper for him to just wear depends in case I scare the piss out of him instead of me paying several hundred dollars to have tests repeated within the 30 day criteria window. 

Oh well, going to my primary care doc tomorrow to obtain a health clearance. I haven’t been healthy for a longtime and the PVNS was just a side trip on the way to finding out what’s causing me to feel so ill and cause so much pain.

I’m going to use distraction and refocussing now and go make some cut out Christmas cookies. 

Appointment With Surgeon: Episode 1, Part 1

I had my first appointment with the surgeon on Friday. Fortunately, she is experienced with PVNS and in the last 1 1/2 years since being in Phoenix she has treated 2 cases of nodular and 1 case of diffuse PVNS. She also has had experience with this disease while working at MD Anderson Cancer Center in Texas. 

When I arrived at the office, I had a x-ray done of my left knee and then the medical assistant did a very thorough job of obtaining my medical history.   It’s amazing how technology has advanced....allowing Dr. D to pull up my MRI and x-rays films on the computer. She explained to me that the narrowed space where the femur and tibia are almost touching is arthritis. I told her... “no!! on the arthritis I’m not accepting any more diseases.” Then she showed me the films of the mri...explaining that the dark spots that where showing up was the diffuse PVNS and that I have a Bakers Cyst and a meniscal tear. 

If broken ribs can be fixed by Photoshop then I'm sure this monstrous bone eating entity that is living inside of my joint can be erased.  Photoshop program is $ and surgery is $$$, well that's a no brainer. Hip hip hurray for Photoshop I'll fix my PVNS with a few clicks on the computer!  A cure has been found :-) PVNS wasn't that difficult to get rid of after all. I sure wasted a lot of energy worrying. Phew!! Dodged the bullet there.  Ok, enough with the denial, but it felt so good.

Questions to ask the Doctor

From: CSL Cartoon Stock

I saw the brainy doctor yesterday....as her staff describes her. Actually her biography is absolutely amazing and that is why I chose to interview her. Yes, I interviewed her to see if I wanted to hire her to be my physician. Just because a surgeon is willing to take your case doesn't mean that they are the best doctor for you in the long run. There are many things that you must consider.

What distance are you willing to travel and how often. If traveling a long distance... after surgery when would you be able to comfortably return home and who would you follow up with. I'm learning quickly that it takes a team to manage this disease. A primary care who coordinates all aspects of your care, a surgeon, radiation oncologist and a physical therapist. Your life may depend on how well you get along with your doctor and the staff.

Story Time:

A few years ago I was admitted to the hospital with septicemia. My internist had another physician covering him on that day. Long story short, the physician on call ordered an antibiotic and after it was running into my IV for about an hour, I started to get itchy and that feeling  of impending doom overwhelmed my body.  I've had allergic reactions before and notified my nurse of my symptoms and concern that I may be starting an allergic reaction. She called the doctor who said that I could have some Benedryl but insisted that the antibiotic continue to run until he could see me in the morning. I took the Benedryl and tried to relax. A few minutes later the itchiness had increased with very slight difficulty breathing but now it felt like adrenaline was pouring into my system. I asked the nurse to turn off the IV antibiotic and to call the doctor...she said, she couldn't turn off the IV but would call the doctor. 

After speaking with the doctor again she informed me that the antibiotic had to continue to run until the doctor could see me in the morning. By this time I was having more apprehension, itchiness and slightly more difficulty breathing. I ended up turning off the IV and said "I can't tolerate any more of this antibiotic and it needs to be changed. He isn't listening and I'm not going to let him kill me." Soon afterwards the doctor came into my room and I told him that I couldn't have any more of this specific type of antibiotic because of my symptoms and fear of going into anaphalaxis if I continue. He said in a very angry tone "If you don't let us restart that IV right now I'm discharging you to home and you'll be dead in a few hours.  After the statement that you made to the nurse about me trying to kill you...do you think I care whether you live or die? Do whatever you want because I honestly don't care."

Feeling very ill, alone, completely worn down, in tears and against every instinct, I foolishly consented for the IV to be turned back on. Within a few moments I was having great difficulty breathing, hives were emerging and my hands were blue. I frantically rang for the nurse multiple times, she never responded. I turned off the IV again and as I took my last gasping breaths I hit the code button on the wall and fell to the floor unconscious. In a nutshell, I awoke in the ICU after a severe anaphalactic reaction, very ill with septicemia and now a chest that felt like someone took a bat to it. I almost died that night because of personality conflicts and I was too ill to fight with the doctor... even though I knew restarting the IV could have deadly consequences. Yes, he was fired from my internists practice and the nurse was put on report. 

This was a very highly skill physician who I had seen in the office previously and knew he didn't like me and I didn't like him. It was just some type of negative chemistry and my instincts told me to stay away from him, but he was just there as backup for my physician. It's important to listen to your gut feeling and make sure that you trust and like your physician and the others in his office. I have dealt with many physicians and compatible personality trumps skill any day. Of course there needs to be a balance.

Don't underestimate the financial aspect of health care....can you afford to be treated by a specific doctor.

Questions to ask during your doctors appointment:

• What type of experience do you have with PVNS?
• What type of PVNS do I have?
• Is a biopsy required to make a definitive diagnosis? When will the biopsy be taken and how long for results?
• How has this disease affected my joint?
• Can it affect other parts of my body?
• What are my treatment choices and which is the best treatment for this type of PVNS?
• What are the risks and possible side effects of each treatment and long term effects?
• Will I need surgery or will I need it in the future?
• What are the risks of delaying or opting out of surgery?
• Are there any complementary or alternative therapies that I should consider? internal or external radiation
• Do any clinical trials or research support these alternative therapies?
• Are there any clinical trials that would be appropriate for me?
• Do you recommend any herbs or other supplements- such as fish oil or glucosamine?
• What should I do if my symptom worsen?
• Is there medication that I can take on an as-needed basis to decrease the discomfort?
• Would exercising make my condition worse or would it help it?
• What can I do to preserve my joint?
• About how much would surgery cost?
• What kind of out-of pocket cost can I expect?
• How often will I need checkups?
• Will I need physical therapy after surgery, when will it begin and for how long?
• How painful is each type of surgery and when would I be able to return to normal activities?