Sunday, November 14, 2010
Blog Mission/My Story
The Mission of this Blog:
There are about 11,000 patients at risk for needing replacement of the DePuy hips that have been sold on the market since 2003. I am one of those patients. Becoming a very informed patient at this point is my objective and I thought there must be many others out there who are going through this awful nite mare. Maybe we can help each other. How? If you are equally concerned about this process by attemptiong to identify answers to the questions noted below, I would like to hear from you. Maybe it is true that there is strength in numbers. Maybe we can combine the determination of Erin Brokovitch along with the social media tools available to us today and work as a group to answer these types of questions and many more which others who are subjected to this recall might have. The mission of this blog:
· Surface as much information for the hip replacement patient
· Provide independent research into the issues involved in this recall so that we can examine all sides of the questions to become informed patients.
Stories of hip replacements are always associated with people in their late 70s and 80s, or at least that is what I thought until I was advised I needed one at the ripe old age of 52. In retrospect, I was so debilitated at that point from my inability to do much of anything involving movement, that I had to take some action.
I learned that replacing one’s hip is, in part a medical recommendation and in part a personal decision on the timing of the surgery. Given my tolerance for physical pain, I postponed it as long as I could, as I imagine many do who are advised to replace a hip. After all, I had my hip for 52 years and parting with it, despite the issues I had walking-(if you want to call leaning on a 3 wheeled walker walking)-or crawling into and out of a car-my Saab sports car (not on the recommended list for people who can’t bend over or even pet and feed my 13 year old cat)…No, a hip replacement was not at the top of my list of things to do at the age of 52. However, all tasks ultimately became so insurmountable that the hip replacement was inevitable. So, I relented, checked into the hospital and had my hip replaced…. But not without a great deal of research to determine which doctor, which procedure, which hospital and where and how would I recuperate as a single person (note, I spent no real time researching which prosthesis I should consider other than to read up a bit on the one my surgeon recommended. I do recall him telling me about the durability of the metal prosthesis for younger patients vs considering the plastic or the ceramic options that older patients might consider.)
To make a long story short in 2006, I decided to use a surgeon who came highly recommended by a friend of mine who was a physician on the medical staff at the local medical center. He would perform a minimally invasive surgery using small incisions to replace the hip which required significantly less recovery time. Sounded like my kind of procedure! I was out of the hospital in a few days, recuperated for a week in a local nursing home, spent a week at home and was driving and back to work the 3rd week or so following surgery. I was left with 2 scars, each measuring about 2-3 inches in length; one on the front of my upper quad and one on the back.
I thought the whole thing was a medical miracle as most who have hip replacements can attest. You literally get your life back again. I was so pleased that I really never thought again about my hip until a year ago. I started having pain on my walks. Of course, I initially blamed that pain on the sidewalks, my shoes or anything else that could possibly be associated with causing that pain. I did visit my surgeon at the time and he didn’t think much of it. I recall speaking to my Internist about the pain and she commented that it was awfully soon to experience hip pain after only 4 years.
Fast Forward to August 27th 2010. “J&J’s DePuy Unit Recalls Hip Implants” was the cover page in the Marketplace section of the Wall Street Journal that day. Yikes, this sounded familiar!...As I read on, I noted the following:
· 93,000 units (hip replacements) were in question because too many patients needed surgeries to replace the DePuy devices. (Generally only 5% of hips need replacing after 5 years. These recalled implants had to be replaced at the rate of 12%-13% after 5 years. That means, at this moment, there are approximately 11,000-12,000 patients who are at risk for the need for a new hip replacement!)
As I read on, I got a really sick feeling in the pit of my stomach:
“Metal on Metal implants have drawn scrutiny because ware can kick up metal debris that damages surrounding muscle and tissue in some patients, thereby requiring that the implants be replaced earlier than usual…Surgeons try to avoid doing hip operations because ‘revision’ surgeries carry risks and successive implants don’t tend to fit as well as the first ones…revision surgeries ‘are technically more difficult, they take longer and the patient is more at risk of complications and the recovery is more prolonged…’revision’ surgeries are also expensive. “
I knew I had the DePuy hip but perhaps I was lucky and somehow missed the whole recall. Surely, I would hear if I were one of the anointed.
Fast Forward to the end of October of 2010; eight weeks following the recall. I had not been formally notified by my surgeon that I was on the recall list. I wonder why I never got a notification? I decided to call the orthopedic surgeon and sure enough, they confirmed that my hip was one on the recall list. I was told that the hospital had inadequate records so the office staff had to review all of the patients one by one to figure out who was involved with the recall! What?
To then add insult to injury, while I was not notified by my physician, I got my first e-mail (if you can believe this) from a litigation team-to my office e-mail- soliciting my business for participating in a class action suit for my hip. What? How in the world would a litigation firm know about my hip replacement when the surgeon didn’t know if I was on the recall list? Isn’t there a HIPPA law that prohibits disclosure of medical information?
So, there you have it. My current symptoms (revised on 4/23/11-those symptoms were short lived..a few weeks or so...currently, I have no pain or outward sympoms of any issues):
· Hard time getting up out of my chair.
· Can’t put much weight on my left leg.
· Difficulty climbing stairs.
Here are a short list of my questions:
1. Risk from a new hip replacement:
· What is the real risk to us?
· What are the complications to revision surgery?
· What are the symptoms that would necessitate removing this?
· What are the chances that we might have permanent impairment?
· What kind of impairment?
· Who really knows the answers to these questions since this recall is the first one for this unit?
· Are all patients being told the similar things in answer to these questions?
2. The Implant:
· What is the real data that led to the implant being approved in the first place?
· What new implant should be put in if it has to be replaced?
· What does that data look like for other hip replacement options?
3. Physicians :
· Who best to perform revision surgery?
· Are the physicians who put the hip in initially the best people to replace them?
· Are their experts out there in revision hip replacement?
· Who are they?
· What is their success rate?
· Why doesn’t the hospital have computerized records of what prosthetics were placed into patients for rapid response to recalls like this?
5. J &J:
· What did they know and when did they know it?
· Who are all of these litigators out there trying to represent us? Who should we work with and why?
· How did these litigators get our name? Is there a leak in the system that would enable our privacy to be violated by circulating the names of people who have had hip surgery?
My commitment to you:
As a business person in a small VC funded company, I have more than full time job but I will try to post something helpful each day that I find in my research to provide me with answers to the above questions. It would be great if there are more of you out there who can offer feedback and information as well. I have a strong sense that the patients need to become empowered with information in order to make it through this ordeal. I look forward to hearing from you.
Posted by Connie at 4:20 AM