Wednesday, August 22, 2012

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. 
 

Friday, August 17, 2012

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!

 

Tuesday, August 14, 2012

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.

Tuesday, August 7, 2012

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. . . 



Friday, July 27, 2012

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.

Thursday, July 26, 2012

I did it this time

Well it is official the ankle is broken. The ligament is pulled off of the ankle bone and the Orthopedic Foot and Ankle Surgeon said there are 2 ways to look at this 1) it is the very very worst sprain ever or 2) the easiest break ever. Either way it is a 7 week recover time 3 in a cast and hopefully the other 4 in a boot. 


So I am taking the week off to figure out how to walk in this darn thing. So far the worst part is trying to sleep. The cast is so heavy I can't get comfortable and it is on my left leg which is the same side I had the hip surgery on so it is affecting my hip as well. 


I went to the gym yesterday and tried to figure out what exercises I could do since swimming is not an option for a while. Turns out there are very few left. I was hoping that I could do the rower but even that is not going to work if the cast were an inch shorter then maybe... but in it's current configuration not happening. I ended up lifting weights and using the cable fly machine to do some upper body /oblique exercises. I ran into the gym manager as I was going in and he suggested I check with the Chiropractor on site to see if he had an Upper body bike I could use. The UBE is a great cardio machine that uses only the arms but gets the heart pumping. Unfortunately they do not have one at the gym or in the Chiropractor's office. 


I spent the day working on a project at the desk and running some errands and by the time I got to bed my leg was very swollen and throbbing. Today I must take it a bit easier and keep the leg propped up more.



Sunday, July 22, 2012

Maybe I should listen to the Universe

It is becoming fairly obvious to me this year that the universe is trying to tell me something. Every time I start to get going and am feeling fairly good something puts a "hitch in my get a-long". Today was not any different. 


I was helping my son move a queen size bed to his apartment and we had just taken the frame out of the back of my van and he was walking it into the building, while I turned around to start unhooking the ratchet straps. When suddenly my left ankle twisted to the side and I heard a snap and I stumbled to the ground. Of course my all purpose word flew out of my yap (actually several times) as I lay on the sidewalk. 


I got up and assisted in getting the mattress and box springs off the roof of my van and up the stairs but the more I tried to walk the more it hurt and having heard the snap I decided the prudent thing would be to get an x-ray. So we headed off to the Emergency Department. Where we spent the next 3 hours UGH. And yes it is technically a broken Ankle... not of the bone itself but the ligament has pulled off the bone. 


So now I am in an air cast and need to get in to see an Orthopedic Surgeon this week. What a coincidence that Andy already has an appointment with his Foot and Ankle specialist on Tuesday in Columbus, and I was planning on going along any way. Now to see if they will put me on the schedule also. Luckily I have been to see this guy once before myself so it is not a new patient consult. 


REGARDLESS I am back on crutches and I am moving slowly again. Awake and unable to get comfortable so that I can sleep.

This is the 4th thing that has happened this year that has slowed me down. January was my hip surgery with 8 weeks off work for recovery. I was feeling fairly good and then in April was hit by a softball in a batting cage and apparently cracked my pinkie which fully broke 4 days later when I got it caught on my steering wheel. 

In June I spent the first week of the month working around the house climbing ladders painting etc. and ended up causing a flare up of my hip joint which filled up with fluid. Now 7 weeks later my hip has finally started to feel better and whamo I screw up my ankle. 


There is a message here.... 
SLOW DOWN! 


So maybe my life is due for a course correction? I have a tendency to let fear rule my decisions and while I know that there is a purpose to all of this I get fearful that I won't be able to pay the bills if I can't work. This is no small problem it is all encompassing and terrifying. I know that with this hip problem I can't continue in my present job forever. And yet I can't come up with any other solution. My line of work is specialized and going back to work at a hospital is not much of an option. 


While I know that I need to make a plan of action I am stymied and don't know where to turn. For a while I was thinking that I should look into the chaplain training at the local hospital, but since that is strictly a Seventh Day Adventist hospital and I have left the SDA church I do not want to have to be forced into a strictly SDA style of chaplaincy. I believe that every one has a piece of the "truth" and no one race or religion holds all the pieces. And I think everyone should be accorded a modicum of respect for their beliefs. 


So where to  turn ? I have been working on staying in touch with my inner peace and find while I swim that I am most connected and I find myself repeating the lines to the hymn "When Peace Like a River attendeth my way, when sorrows like sea billows roll. What ever my lot thou hast taught me to say it is well, it is well with my soul." This has become a sort of mantra that I repeat as I work my way up and down the lane of the pool. It sounds strange I know but it makes me feel calm and focused on the moment. 


So now grasping those words I have to say ... what's next universe?