Nursing Care As It Should Be

While I often devote many of my posts to problems with the medical care I encounter, I do think it is just as important to share my good experiences with medical professionals.  I have been fortunate over the last number of months to have had stellar nursing care when I have been at the hospital for infusion treatments.  These nurses make the ordeal of my monthly treatments at least bearable; and without their care and support I’m not sure that I could tolerate what I repeatedly go through.

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First and foremost, these nurses are obviously good at the medical part of their job.  In my case, they are constantly adjusting my infusions and dealing with the challenge of a having a highly allergic patient.  This usually means extra attention and care, which means extra time.  In addition, the nurses’ jobs are clearly stressful on a daily basis.  Every time I receive treatment, I see some sort of emergency situation arise during the day with one patient or another.  Yet, they are always handling these situations, seemingly with ease.  They take care of the problem and don’t ever seem to lose track of what’s going on with the other patients.   I know this is no accident and that they are highly trained to do just this, but it is still something I find remarkable.

But what led me to write this is post is not just the obvious things they do, but the assortment of little thinks they do that make having to spend time at the hospital a little less of a drag for me.  In short, these nurses provide humanizing care that helps me and I am sure other patients get through difficult health problems.

So many examples come to mind.  I am thinking of one nurse in particular who hugs me upon my arrival.  We share stories about our families and recent events in our lives.  When she finally met my husband, she was excited to put a name to his face and now asks about him every time I’m there.  I am not made to feel like just another patient or a nuisance, which has been the case in many other hospital situations I have had.  It seems to bother her more than me when she puts in my IV. She goes as far to apologize when she puts the needle in and especially if she has to do it a second time.  I know she really does care and such compassionate treatment is rare and truly makes a difference in how a patient feels.

I often observe how she and her co-workers talk to other patients as well. It is really they who explain the side effects of medications and treatment in an understandable way from what I can see.  On many occasions, I have heard other patients thanking these nurses for telling them something that they had no idea about or didn’t quite understand after their visit with their physician.  It is this rapport and relationship building that makes patients comfortable enough to ask a question and share information about a medical problem they are having, and as a result, better medical care occurs.

At the same time, I believe the welcoming atmosphere that the nurses create fosters an overall sense of camaraderie among patients at the infusion center.  I have my regular cross word puzzle buddy who is a grandmother, 40 years my senior.  There is my friend who accompanies his mother for infusions who started to bring me free movie tickets when he learned that I was a fan.  Patients share cookies they have baked.  You get the picture.

I do wonder if others have had similar experiences.  I am also curious if anyone has tried to track the effectiveness of various infusions centers, with patients receiving the same treatments.  I have to believe that the quality of the nursing care in the way they administer treatments, solve problems, and answer questions can really make a difference.  I am certainly grateful for the nurses who treat me and try to let them know it every chance I get.

"You Only Have Sjogren's"

"Only."  If it were "only" anything. What a dreaded word for many of us afflicted with this condition.  It's something I, and most others I know, have heard variations of before...from friends or colleagues.  But I don't expect to hear it from a doctor.

I was seeing a dermatologist for complications my doctors believe were related to my autoimmune disease. The resident came in first and asked about my rheumatological history.  When I said I had Sjogren's--which is only one part of my complicated history--his comment was, you guessed it, "You Only Have Sjogren's".   I could have strangled him with his stethoscope right there. Really? Only?  Like he had any idea what that meant.

At that moment, I decided that I needed to speak up instead of reaching for his neck.  If I had said yes, I would have been an accomplice in aiding and abetting ignorance. Playing into his ignorance that Sjogren's was not a serious, potentially multi-system, and disabling disease.  So, I opened my big mouth trying to strike a balance between being polite and firm and decided to start educating.  I informed him that "saying I only had Sjogren's is just not accurate" and I went on to outline some of the specifics of my illness and how it has affected my life. I included the fatigue, joint pain, eye pain, pulmonary problems, and, in my case, cranial neuropathies as well.  He seemed to think Sjogren's was just the dryness disease.  I almost laughed as I told him "I wish."  I am hoping that hearing my story of the years until diagnosis (some painful irony that this doctor was with the same hospital which had never figured out my diagnosis) and the range of symptoms I possessed would change how this doctor viewed the disease and would treat his future patients.

I have heard other doctors and lay people make this type of statement before. Though I always found it troubling in the past I would have often said nothing.  But I've decided educating everyone I can is a small thing I can do for others with Sjogren's.  If patients with Sjogren's like me are not going to educate others, the widespread lack of awareness will certainly stay the same.  People will continue just to associate Sjogren's with dry eyes and dry mouth--aliments that many consider a nuisance and can easily be managed (although we know even those symptoms are not so simple).  They will not understand how you can be disabled when you have Sjogren's and assume you can function just like anyone else.

I'll give the resident some credit. I think after recovering from being stunned after my lecture, he seemed to understand this was something he probably should think more about in the future.

This whole exchange got me thinking and doing some additional research. I wondered what the standard literature said. A little bit of google research took me to the American College of Rheumatology Sjogren's Patient Education Page.  Lo and behold, Sjogren's is made to sound like a very manageable disease where symptom relief mostly focuses around dry eyes and dry mouth.  A few eye drops and you should be all set. Complications beyond dry eye and dry mouth are made to seem like rare anomalies and it would appear those with Sjogren's have to make very few life changes.

To quote them:

BROADER HEALTH IMPACT OF SJÖGREN'S SYNDROME
A vast majority of patients with Sjögren's syndrome remain very healthy, without any serious complications. Patients should know that they face an increased risk for infections in and around the eyes and an increased risk for dental problems due to the long-term decrease in tears and saliva.

Rarely, patients may have complications related to inflammation in other body systems, including:

• Joint and muscle pain with fatigue
• Lung problems that may mimic pneumonia
• Abnormal liver and kidney function tests
• Skin rashes related to inflammation of small blood vessels
• Neurologic problems causing weakness and numbness

In a small number of people, Sjögren's syndrome may be associated with lymphoma, a cancer of the lymph glands.

Well, lucky me I've got four of them.  Most others I know who suffer from the condition have multiple symptoms and the list above is not even extensive (Check out this diagram from the Sjogren's Syndrome Foundation for a more comprehensive list of symptoms).  The broader medical community still seems very much behind the times with autoimmune diseases.  I'd say the burden for educating them and the broader public has to begin with us. If not us, who?

Calling My Doctor's Office: It Shouldn't Be This Hard

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I had an experience with my internist's office recently that just made my blood boil--and I know that many other patients have had similar interactions with their physician's offices.  My doctor had nothing to do with the interaction and it was a phone call with one of her office administrators that I am writing about.  It was a clear reminder why healthcare can be so unfriendly to patients and why for people with chronic illness constant interaction with the medical system is a stress on its own.

I called my doctor's office to deal with a timely and serious medication issue and to send recent abnormal test results.  I was doing what I was supposed to do--responsibly addressing and coordinating my own medical care between doctors' offices.  The story in brief is that the administrator on the phone repeatedly scolded me for calling the phone number that I did.  She kept repeating, "do not ever call on this number it is for emergencies and for physicians."  I explained that this is the phone number that my internist has specifically given me to call.  (Not to mention that my internist has also given me her cell phone number and direct email and there is good reason for this. She has told me I am one of her most complicated and sickest patients.)

Despite my best efforts to relay the instructions my doctor had given me, it was no use--the scolding just continued.  When I was finally able to relay the reason for my call, which was nearly impossible because the administrator was trying to get me off the phone as quickly as she could, she again repeated that I was never to call this number again. I felt as if I was being treated like a child who is told she had misbehaved.  Not surprisingly, the administrator did not help me with either of the two issues I was calling about.

The reason I see this internist is because she takes my health problems seriously, is responsive and compassionate, and encourages me to be in touch.  But this administrator clearly finds my interaction and communication with the physician bothersome.  I wish that I was not sick and did not require ongoing medical care.

The last thing most people want to do is be involved with a physician's office.  The people who work there should serve as a kind and a effective conduit between patient and doctor, making what is often an unpleasant experience better.  While this is not always the case, I have found that some administrators in physicians' offices seem to relish serving as a barrier between patients and doctors. They are officious as opposed to helping patients. 

I am sure this administrator's work is not always pleasant since it requires dealing with anxious and upset patients at times. But that is the nature of the job.  A helpful and friendly staff member behind the front desk or on the phone at a physician's office can make a huge difference for patients and their families.

As a patient, our best recourse is to file a complaint when we are treated poorly and if the situation is bad enough to leave the doctor's practice.  The next time I see my internist, I will tell her about my interaction with this staff member.  Doctors are in charge of their offices and it is their responsibility to make sure those who work for them do their job well.  In my opinion, there is a real problem in the culture of healthcare when patients, the consumers of healthcare and those who are sick, are treated as the enemy.