It's Your Life, Choose Your Doctor Wisely- Bad Choices Could Be Fatal

I have been procrastinating or better yet, debating with myself about posting this article I'm about to write. I've been nudged by many to write and it's hard because it's such a personal topic. It's also a topic I hope sheds light- my goal is not attention seeking, it's my hope others may benefit from this article. 

Before we had Google

My husband (boyfriend at the time) was 18 years old and was always bruising easily, dislocating joints, had Chronic pain and bled easily too. He was also developing cysts on his elbows quite frequently.  I decided to use the Merck Manual and do some research. I was all too aware that he seemed to lack elasticity in his skin and that was why he was able to stretch his skin beyond the normal limits. After reading for a few weeks, I was convinced he had a disorder called Ehlers Danlos Syndrome. I told him to ask the Dr. to take a skin biopsy and send it off to a lab in order to rule this out. He thought I was nuts but he did bring it to the Dr's attention and one month later the diagnosis was confirmed- it was EDS.  EDS is a connective tissue disorder and patients don't produce enough collagen. There are many types of EDS, his is the most common form, The Hypermobility type which is what he has. 

And so our journey began with the Health Care System

Aside from the fact that he developed Bacterial Meningitis, Guillain Barre Syndrome, Basilar Migraines, Asthma, and Sarcoidosis, all before the age of 25, he rarely missed a day from work since the age of 14 when he began working 35 hours per week in order to pay for his Catholic Education.  My husband's work ethic is not only mind boggling to me but admirable. I believe he chose to focus on work instead of focusing on his ailments.  

When my husband was 39 years old he had GERD so bad he would wake up choking (literally) at night because he was aspirating. After tests were performed they concluded his Esophagus was flaccid. The valve which should close completely wasn't and it was stretched because of his underlying connective tissue disorder. He had surgery to tighten the Esophagus.

A year later he was in such extreme pain he went to the Emergency Department and was admitted. They later found during an emergency surgery that had to be performed that he had a large hiatal hernia and it 'appeared' the Esophagus was never re-attached properly, it had pulled away so his stomach was floating per se. He was a very ill man but his WILL was stronger than the sequence of events he endured.  He recovered and continued to work even while hospitalized. The second Physician who performed the Emergency surgery kept in contact with me as well as my husband. You need to be an informed caregiver in order to provide the proper level of care, which may include getting in touch with the Doctor if your loved one's condition changes. A good Physician will not only tell you what to watch for, they will also let you know they are available if you need to get in touch with them.  He was a good physician.

At age 41 my husband was feeling well with the exception of knee pain which Dr's told him it's just an unfortunate side effect from the EDS and they prescribed high dose steroids. The steroids seemed to be helping so he planned a remote trip to Algonquin Provincial Park in Ontario, Canada to do a canoe trip with my son, his brother and my son's friend. While he was in deep into Bush Country he ruptured both patellar tendons in a period of two days. He had surgery, kept working from the hospital and from home until he returned full time. It was determined that my husband probably had micro-tears in his patellar tendons prior to the steroids. Steroids can make tendons more brittle and they believe that's why he was an accident just waiting to happen. EDS happened to be the other factor which caused his tendons to develop micro-tears; they were stretching just like a rubber band being stretched beyond its limits. By the time my husband has this surgery I was determined to over- see his care 100% because I felt others had failed him in the past. He had a cocky Physician who didn't seem to respect women very much but I didn't allow that to stop me from voicing my concerns and speaking up for him when he was too weak to speak up for himself.  This physician did not try to stay in touch, thank goodness we had excellent nurses who were more than happy to keep me updated, along with, Physical and Occupational Therapists. 

The Final Staw

In 2009 my husband's asthma appeared to be getting much worse. He went to his PCP who eventually sent him to a Pulmonologist and it was determined that his sarcoidosis was probably symptomatic and causing his Asthma to flare up. For two years they treated his illness as Acute Asthma with no success.  In 2011 my husband's heart rate was also running fairly steady at 100 beats per minute so  they scheduled him for a cardiac cath.  After he had the Cardiac Cath done he had complications with his breathing and they admitted him to the Cardiac Floor at Hamot hospital. His breathing was not getting better and they did a CAT Scan which showed findings they were concerned about. After the scan was read they referred him to a surgeon while he was still an in-patient at Hamot Hospital. The Surgeon performed a lung biopsy. They had to collapse the lung in order to get to the section of the lung they wanted to biopsy. This procedure was called a VATS procedure. My husband was an in-patient for eight days and they discharged him the day they removed the chest tube. Yes, you must have a chest tube inserted during/after a VATS because the lung needs help to re-expand. He had an extremely large hematoma from the armpit to his groin and it covered half of his back and stomach. The Dr. said it was probably due to his EDS. All I can say is that the hematoma was very gross to look at and seriously scared me. They even 'joked' with him that they never had a patient develop a hematoma like that with a VATS and he looked like he had been thrown to the pavement from a motorcycle accident. Yet, they sent him home unhealed!  For the record- he continued to run his business from bed (remotely). He was only out of commission from work for the first 3-4 days.  Amazing guy!

Sequence of events after the VATS and why it's important to do your homework to be a good Patient Advocate

• He was discharged and ended up in the local ER 4 days later because his breathing became worse along with increased pain. 
• Our local ER sent him by ambulance back to Hamot Hospital and they admitted him for 24 hours stating his symptoms were normal under the circumstances.
• He was brought back home the next day and that evening he developed a fever of 101, I called the Surgeon on call with the group that did his surgery at Hamot Medical Center and was told to give him Tylenol. I was also told if the fever was not gone in the morning, to call back?!!
• Our local hospital's protocol was to send the patient back to the 'offending' hospital who performed the surgery.
• We were adamant that he was not to be sent back there, so they admitted him for 5 days and gave him 3 IV antibiotics. When he came home his breathing was better and the fever was gone. His hematoma was beginning to heal too. 
• At some point, his Pulmonologist called with the results of the biopsy stating it was Sarcoidosis, even though we were told years ago it went into complete remission. 
• Before we received the results I didn't trust this hospital or the Dr's we were dealing with there so I did a lot of research and made an appointment for a second opinion. 
• I was able to get him into to see the Medical Director of Pulmonology at the Simmon's lung Center at UPMC
• We were told to bring the pathology report along with the slides. After the Dr. examined my husband and went over his history he asked if he could take the slides to a Conference because he was fairly certain it wasn't Sarcoidosis, yet another illness. 
• After the slides were seen by UPMC's top Pathologist and Doctors at a Pathology Conference they determined it was not Sarcoid but an illness called Hypersensitivity Pneumonitis which was caused by a medication he was on.
• My husband already had some scarring because the illness was mis-diagnosed for over two years. His breathing became a bit better after the drug was removed.
• He was also referred to another Pulmonologist within the group for another opinion because he was struggling to breathe as time progressed over the next year or so. 
• They determined he had some damage, his EDS may be a factor and he needed to be put on an anti-rejection drug to lessen his symptoms and stop the scarring from progressing. It's been six months and I'm happy to say he's breathing much better, along with having his quality of life returned to him. 

The Caveat

Once he became a patient at the Simmons Lung Center at the University of Pittsburgh Medical Center the Doctors treated him as a human being, not just a number. Both Pulmonologists have called our home to check in on him, they've kept in contact via email and his second Pulmonologist even gave us his personal email address along with his cell phone number. How often do Doctors do this anymore? I don't think it's very frequent but I can say it adds not one but ten extra layers of reassurance when you know the Doctors care this much! One of his Pulmonologists even kept in touch via email from China after my husband was put on the *first* anti-rejection drug, unfortunately, he had a bad reaction and that is why the Dr. kept in touch. So far he's been tolerating the second anti-rejection drug well with much better lung function.  

Never stop fighting for your loved one if you suspect something is wrong or has been misdiagnosed. remember, Doctors are humans with flaws so do your homework. Go to sites that give real patient ratings on the Doctors you are seeing. Yes, please use google to research drugs, and diagnoses so you can be an informed patient or patient advocate. Education is vital today- we need to be our loved one's second set of  ears and eyes. Finally, never lose hope. There are good Doctors out there that truly care about their patients. It's just a matter of finding the right Doctor or Doctors. 

I can happily report that my husband is still working and running his own business 60 plus hours per week. He thrives on work and with the type of business he's in, he also thrives on keeping up with the latest technology. His love for his family has also been a major factor in his drive to get better and keep providing for us. I can't tell you how much I not only admire his strong will but love and respect him too. 

Photo credit- google images: 

http://www.upmc.com/Services/pulmonology/interstitial-lung-disease/Pages/default.aspx

The Doctor in the photo happens to be Dr. Kevin Gibson, my husband's primary Pulmonologist