PVNS study

Novartis is doing a clinical trial of a new medication for PVNS ... MCS110. Here is a link to the study.

http://clinicaltrials.gov/ct2/show/NCT01643850

Long time gone

Hello again, 
I have not been in the mood to stop and write for quite a while. I have finally gotten out of the cast and out of the boot which were supporting my broken ankle (evulsion fracture). And I have had three PT appointments and my ankle is healing fairly well. I am still not supposed to be doing a lot of walking and swimming laps is still out. Both of these being missing in my world have caused me to gain 15 lbs since the ankle break. I am VERY fluffy now! YUCK!
I am sure that once I can swim again I will be able to drop the weight but it is frustrating none the less. 

I have even been delinquent in my duties to the PVNS organization that we are starting. Although with school starting everyone else has been preoccupied also. I will be getting back to it this week while I am on vacation!

Speaking of vacation I booked the last two weeks of September as vacation time. . . even though I was not planning a trip I have all this time I must use up. So I completely forgot and booked work for Monday and Tuesday this past week which ended up causing me to work the entire week. I was so frustrated and upset on Thursday that I was in tears at a hospital where I was working. This is never good. But climbing up and down from the floor was hurting my hip and the boards I got from the factory did not work for the second day in a row and I had a melt down. 

Thankfully the set of boards that I got on Friday worked and I was able to get the Anesthesia machine calibrated and tested and in working order. I told the office that I was turning off the phone and running away this week. I called a friend from Toronto to see about going for a visit but I don't think that will work. 



I am dog sitting a 120 lb Bull Mastiff for a friend who is in the nursing home doing rehab after having had her neck fused. When I was leaving the hospital yesterday my younger son who is staying at my house to help care for the dog, texted to tell me that he (the dog) was being bad. I later learned that the dog had gotten in to his (Dan's) back pack and eaten something. Well at midnight I learned that the dumb animal ate several packs of food...packaging and all. All of which he puked on the floors of my house. So at 1 AM I was dashing to Walmart to get a carpet cleaner machine. Damn dog!
So with a stupid beast in the house and a son who doesn't think it is a big deal that the dog ate this stuff I can't leave the two alone in my house for a few days!
 

UGH! Calgon take me away!!!

Patients need an advocate

I spent the majority of the day with a friend who is in the hospital. The care she was receiving was not adequate and she needed someone to be there with her even though she was lucid the staff was not taking her seriously. Missteps, miscommunication and poor treatment were the issues at hand. 

Sadly perception is the biggest problem in any patient care situation. And what one person says in what they feel is a perfectly reasonable tone of voice and perfectly reasonable delivery style, can when heard by someone in extreme pain be completely misconstrued. A problem arises from this mis-perception of the discussion, or the treatment. And lack of understanding of the patient and their specific psychological and emotional problems can exacerbate the issue. 

Today a doctor came into my friends room and proposed a plan of action for the following day. Unfortunately I stepped out and was not privy to the entire conversation and I really wish I had stayed. Because the understanding of the patient was that this doctor wanted to get her up and moving so that she could be booted out of the room and out of the hospital ASAP. He left and I returned and she became hysterical in the retelling of the episode. The surgeon had not been in at this point and the idea of being booted out of the hospital with a pain level of 8-10 uncontrolled pain had her completely freaked out. Worry about possible continued damage from this suggested proposed plan had her thinking she would end up paralyzed. By the time the surgeon had finally come to see her and confirmed  that surgery would be the best course of action she had calmed down and was able to speak to him and have her questions answered. But she had been put through a needlessly stress full situation that could have been avoided had the doctor taken the time to stop and read her chart before walking into the room and by simply listening to the conversation rather than taking notes and getting caught up in what he was writing and missing sections of the conversation. This simple act of not being heard and not caring enough to walk into the room prepared was ridiculous.

Here is my concern, what happens with patients who are not able to advocate for themselves; those who are incapacitated, those who speak another language or those who can't speak or hear at all; who looks after them and their needs? With the new Electronic Medical Record age nurses spend so much time with the COW (computer on wheels) that their time with the patients is diminished, especially if they have 4 or 5 patients at a time. 

I wonder if the incapacitated patient is a preferable one for the lazy nurse. With an incapacitated patient the nurse doesn't have to answer the call lights all day long. When the nurse has a non lucid patient they won't know what they have been given for medications, and won't know that what the nurse is trying to give  them is not correct, and above all will not argue.This makes life so much simpler for the nurse who does not want to be bothered.

How can patients protect themselves? Have a friend or family member present at all discussions. Someone must be there for you and only you. Someone who you can trust who will assist in speaking for you if you can't and will understand the medical lingo. DO NOT bring your family member who has challenges of their own to be this person. If you do not have a family member or friend who can be this person for you where can you turn? 

This is the dilemma I saw today. For those who are language challenged all hospitals offer interpreter services but sometimes it takes a while to get them lined up. For those who can't speak there needs to be an alternative to the nurse call box. What good is a box that they need to speak into if the patient can't speak? In this modern computer age we should build tablets into each bed with a messenger program for the patient to message the nurse. Call boxes are old school! Actually this would work also if they had a built in interpreter that the patient could select the language. Of course this idea only works on lucid patients!!!! 

We are left with those who are completely incapacitated with no family or friends to speak for them. And sadly we will need to rely on medical personnel and hope and pray that they got into nursing to care for people and not just for the outrageous salary's that they are paying these days. 
 

Happy Dance

I can stop worrying! YAY! 

I got a call from my Human Resources office yesterday and found out that I have 17 weeks of short term disability left for this year. This is AWESOME news since I thought I only had 8 weeks and I know I will most likely need more than that for the hip replacement this December.

On top of this happy news when I called my boss to let him know the good news. I mentioned how worried I had been that I was going to lose my job because I needed surgery. His response was even if he had to terminate me due to going over the allotted time he would have held my job open for me! Whoot this is amazing! So here I have had myself in a dither for nothing. It is nice to hear such things from the boss. 

So now my panic and fears can be put to rest and I can work on getting stronger before the surgery. I went to the pool on Weds and Thursday and tried to swim. Unfortunately the kicking motion you need to use to swim freestyle is too hard on my ankle at present. I was able to swim on my back a few laps just using my arms. I also did a few laps of leg exercises, high knee lifts, side steps. On Thursday I wore my air cast into the pool to support the ankle which made a big difference. I also used these foam dumb bells which don't look like they would be of much use but when you hold them under the surface of the water they provide a resistance that is quite useful in muscle strengthening. I will be swimming again soon...This is not going to stop me!

 

The Ups and Downs on the Roller Coaster of My life

It is Tuesday and it has already been an up and down ride on the coaster of life. Funny how that works. 

So today 8/14/12 was visit the orthopedic foot and ankle specialist for both my son Andy and myself. This was a fairly positive event because I got my cast off and graduated into a boot. The worst part of getting the cast off is I am SO TICKLISH! The ortho tech was surprised at my reaction to the cast saw. . . namely I can't sit still and I yelp! Once off the view of my leg which had been trapped for 3 weeks was so not pretty. Xrays showed that the break  is healing well and I am allowed to be in a boot rather than a cast for the next 4 weeks and will follow up with PT. Even more good news I can go back to swimming tomorrow!!!! Yeah! 

Andy got some ok news... not great but not rushing into surgery which is what we thought was going to have to happen. He has arthritis and two of his bones in his right foot are 50% bone on bone. This can be dealt with for  a while but he will eventually need to have the ankle fused. He wants to wait a while to see what is happening with Susie's job, since she learned there will be cut backs to the Respiratory department at the hospital. So he is going to try to cope for a  while longer and then get it fixed. 

I emailed my hip surgeon's PA last week with all my questions regarding the possibility of a total hip replacement. She emailed me yesterday with answers to all my concerns and I now have a date scheduled for my surgery (LTHR =left total hip replacement)  which will now be 12/4/12. I really like that date... seems like it is an auspicious date. I won't know the scheduled time until the week before surgery. I am coming to grips with the idea that I might as well just get it fixed now! 

I even joined a new group on Facebook called Young Total Hips. . . a group for people under 50 who have had or are having a total hip replacement. It looks like they will be a great resource and are already an inspiration. One guy on there posted a pic of him on a hike 3 months and 9 days post op, and they hiked 10 miles that day! Wow I am impressed. I am looking forward to great results and have to get back to the gym and swim and get my muscles all ready for this surgery. Here is a link to the approach the surgeon is planning on using. http://www.newhipnews.com/patient/index.html

I like that it has a faster recovery time than a conventional approach. And since I only have 8 weeks left of our allowed short term disability I am concerned about getting back to work ASAP. 

I am still not sleeping well due to waking up in pain but I am hoping that this will solve 60% of my issues! I still need to get my shoulder fixed as well but that has to wait, I have lived with shoulder pain for 20 years a few more months will not make a difference. 

Back into the pool tomorrow...strengthening my muscles...gotta get them all ready for 12/4/12.

My mind is a whirling

Today I had a follow up visit with my Orthopedic Surgeon Dr. E. I was really happy to have this scheduled as I have been having a lot of trouble with my hip. It has been acting up since the beginning of June and it is getting worse. I am limping again and the weight of the cast and the instability of the walking shoe are not helping matters in the least.


So after talking to the PA and the research assistant who is running the study on hip arthroscopy's my doctor came in and checked me out. He looked over the MRI that was done in June and is not happy with what he sees in the image. There is a ton of fluid around the ball of the femur as well as several pockets of something. Hard to tell what it may be but the Radiologist listed several possibilities all of which are meaningless without going in and visualizing the joint up close.
 
Dr. E. feels that it is most likely damaged cartilage and gave me 2 options. The first is to have another hip arthroscopy which would be another 50,000$ surgery, in which he may not be able to fix the problem if it is really damaged cartilage and/or damaged bone. The second is to get a Total hip replacement. 
Because of the history of PVNS and knowing that most people who have the disease as well do better once the joint is replaced I am leaning towards the replacement. 

Of course I had my freak out in the car on the way home and a pity party at home... ate lots of chocolate and ice cream. Now the pity party is over and I must make a decision. I did some research on the joint that he uses and it is definitely the type that I have read about being a better hip replacement. He uses the Stryker Accolade joint and it is a ceramic ball and a polyethylene cup. Some of the things I have read indicate with proper care (not jogging playing tennis etc) I could get up to 20 years with this joint.



So my big concern now is when to schedule this. . . I already used 8 weeks for the arthroscopy in January and FMLA (Family Medical Leave Act) allows for up to 12 weeks off work. My job gives up to 4 months off and if we are out more than 6 they will post our jobs. 

So here is the thing. . . I know that with my hip the way it is I can't keep doing this job. Once I have the hip replaced will I be able to drive the long distances?  Will my job even be available to me when I am recovered? 

The strangest thing about all this is other than my joint problems I actually feel better and stronger than I have ever felt. I used to be severely anemic and had 12 IV rounds of Venofer to pump me up. Since then I have gotten my hormone levels correct and I feel great. I just can't move like I want to... which blows.

Decisions, decisions, decisions. . . 

What Are You Willing To Risk To Truly Live?

“And the day came when the risk to remain tight in a bud was more painful than the risk it took to blossom.” Anais Nin

I found this question and quote on the discussion board of the Shameless Community. It was posed by Pamela Madsen the author, fertility expert, and sexalogolical therapist, to the community at large asking everyone what is holding you back, what do you fear. I find it interesting that she not only asks but answers the question from her own perspective and talks about her fears and what she struggles with every day.

I have been thinking about this question for some time and fear is a difficult thing to name sometimes. First you have to acknowledge that you have the fear then claim it and address it.

My life has taken an unexpected twist due to being diagnosed as part of 1.8 people per million with a rare joint disease called PVNS. Because of this my fears have changed and while I know I will need to make changes in my life to accommodate this disease I am terrified of the changes. First and for most is that I will not be able to continue my current profession forever. I am, like most people self identified by this career, and the loss of that identity will be huge.

On top of that a career change will entail loss of financial security that I have worked so hard to establish. Don't get me wrong I am not wealthy but I am making enough to supply what I need and most of what I want. Any change will mean immediate loss of that security.

At the same time I can totally see that this disease has opened an opportunity for me to continue to develop and grow in my spiritual and personal beliefs and I can so understand that this is the Universe telling me it is time to make a change.

So no the next step is to embrace it and believe that the changes will be good for me in the long run and by accepting that I can allow myself the opportunity to blossom.

Thanks for the reminder.