Are You Reading the Labels and Identifying Your Medication?

September 4, 2017

Several months ago I was hospitalized for a bone marrow transplant to treat cancer.  Fortunately, all went as well as can be expected for a very aggressive procedure.  During that time I kept learning/ re-learning how essential it is to read any product labels that are available to patients and to check/re-check all medications that are handed to you BEFORE you ingest them.  Although not always easy to do when you’re an inpatient, it’s most important to do everywhere – in the pharmacy, in the doctor’s office or in the hospital.  If you’re unable to ask about medications yourself because you’re too ill, your hearing/sight is impaired or you have difficulty with English, please ask a friend/family member to ask the questions for you.

Because my GI system doesn’t love dairy I do my best to stay away from it.  My appetite, as with most transplant patients, was pretty non-existent during my hospitalization.  So, it was suggested I try the newest supportive product called Ensure Clear to provide some much needed calories. I assumed it was dairy free, but when I read the label, I found it had whey protein that comes from milk.  Uh oh.  The dietary staff in the hospital kept sending it up to me and I kept returning it explaining Ensure Clear was actually a dairy product. Glad I read the label!

Additionally, whenever I was presented with a paper cup filled with medication I asked the nurse what was in it!  As I always do, I ask the nurse if he/she wouldn’t mind telling me the name of each drug and it’s intended purpose.  So far, I’ve never had a nurse get annoyed with my question.  Most nurses believe double checking on medications is a very good idea.

In order to be an effective healthcare advocate you’ve got to read labels and ask for help in identifying a drug and it’s intended use. As I’ve said before, this drug is going into your most precious possession – your very, own body.  Don’t be shy.  It’s worth remembering that medical professionals are educators as well as practitioners and therefore, it’s always more than okay to ask questions about a drug BEFORE you take it!  #askforwhatyouneed #trustyourdoctorbutnotthatmuch #whywaitreina #becomeyourownbesthealthcareadvocate

Right Folder, Wrong Chart

June 1, 2017

As most of you know, I have multiple myeloma – a cancer of the plasma cells often called a bone marrow cancer.  I recently underwent an outpatient procedure called a stem cell collection which provides cells for a future stem cell transplant.  The nurses who perform this procedure take great care to ensure sterile techniques are followed throughout to prevent infections.  Thankfully, my nurse paid meticulous attention during the procedure and I tolerated the process without any signs of infection or complications.

Okay. All is well, right?  Not quite. Well, while such focused attention is being paid to the complex procedure sometimes it’s a “little thing” that gets overlooked.  What could that be?  Since the preparation for this procedure involves quite a few injections and my response to them, it’s necessary for the nurse to call with the results of my blood work to determine if I would need additional injections.  Upon checking the phone number listed on my chart within the folder she asked me if the last four digits of my phone number were 1234.  No. Next she asked me if my cell phone area code was 123.  No. Hmm. I was  listening pretty closely now. (Obviously, I’ve changed these numbers for privacy purposes, but you get where this is going.) Then she walked over to the desk to see whose chart was within my folder.  Apparently, not mine.  Although my name and date of birth was clearly marked outside the folder, the chart with another patient’s medical and personal information was within my folder. Oops!! The nurse quickly removed Jane Doe’s chart from my folder, located my chart and placed it where it needed to be: in my folder!   Where had my chart been?  Most likely within Jane Doe’s folder!  Would that error have been picked up and rectified later on, if checking my phone number was unnecessary?  Maybe. And, at what potential cost to Jane Doe and me.

What does all this amount to?  It’s just what I have been writing/saying all along:  Pay attention, please. Ask for what you need.  Become your own, best healthcare advocate. Most importantly, if for whatever reason you can’t advocate for yourself, please find someone who can be there with you at the doctor’s office or in the hospital who can listen, speak up and advocate for you.  It’s that important.  #whywaitReina #askforwhatyouneed #trustyourdoctorbutnotthatmuch #payattention #becomeyourownbesthealthcareadvocate #findanadvocateifyoucan’tadvocateforyourself

“If it doesn’t challenge you, it doesn’t change you.” Fred DeVito

May 5, 2017

You gotta love this quote.  While I was at a local farmer’s market with a friend I decided to give myself just a tiny little challenge at a vendor who was selling kimchi.  I’ve often heard how pungent it was and how awful it tastes.  Too spicy, too hot and too “different!”  Ah ha – too different.  Therein lies the real reason people don’t try something new – it’s too “different.”  But, wait. These were the opinions/perspectives of others.  Was I going to base my choice on the opinions of others?  How would I know if I liked something, if I didn’t try it myself? And so, I did take up the challenge. Just a tiny challenge, nonetheless, but even tiny challenges count! “If it doesn’t challenge you, it doesn’t change you.”  Okay.  Done. Not so bad.  Yes,  a little spicy, but not bad. Couldn’t be worse than the haggus and neeps (turnips, sheep intestines and porridge) I had in Scotland after our server saw me contemplating it on the menu and said: “Aw, go ahead, be a devil !” Couldn’t resist that challenge. Why? Simply because I knew I wouldn’t be back there for a long time and how would I know if I liked it/hated it, if I didn’t eat it myself. Down the hatch! Not my favorite, but very glad I tried it.  If it doesn’t challenge you……..

After surviving the food challenges (ha!), I moved on to a medical challenge at the behest of my husband. I was scheduled for more blood work after I’ve had more blood tests and infusions than I’d like to think about.  My husband suggested I ask my oncologist if I really needed one more blood test at this time.  Weren’t there plenty of recent results he could rely on for accuracy?  And, then – I heard what I had been hoping for – I didn’t need one more blood test right now. Yay and yay.  Saved myself a procedure by challenging my doc in a respectful way by asking for what I hoped I didn’t need.  And just maybe, the doc would reconsider whether one more blood test, etc. was truly necessary for the next patient who came along.  And maybe, one or two people after reading this would ask their doc a similar question that relates to their health.

“If there’s no challenge, there’s no change.”  Thank you, Mr. Fred DeVito.  #whywait #trustyourdoctorbutnotthatmuch  #askforwhatyouneed.

Leaping Without a Net (Trusting Yourself)

April 21, 2017

How do I make a major decision – how do any of us – a potentially life changing/life affirming yet incredibly scary decision?  A choice that has no guarantee of the outcome – a real biggie. For me it’s still all about coming to a place where I trust myself.  But, how do I get there and what criteria do I use to make an informed, educated decision and advocate for myself?

In my case, my decision is whether to have a stem cell transplant recommended by my oncologist.  Pretty major.  More than major.  Without going into great detail – the purpose of the transplant is to replace my bone marrow with healthier cells.  It’s a promising procedure, but not an assured one. So, do I take the leap? And, most importantly, how do I get to a place where I’m comfortable with my decision – that I trust myself.

Here’s my process:  First, I ask the doctor a ton of questions.  Is this necessary?  Is this the optimum treatment at the moment?  What about the risks/benefits, side effects?  What other options do I have?  And then, I ask me (as I’ve mentioned in other blogs) what are my personal goals of treatment?  What am I willing to do/withstand/tolerate in order to potentially have a longer, better quality of life?  That’s a question I will consider over and over again.

Next, I do my own research – read clinical papers, get a second opinion, talk with other healthcare professionals and folks who’ve been through the procedure and finally do some serious soul searching.  Finally, the answer comes:  My own answer.  Yes, it’s the right time and the right procedure and I TRUST ME.

Am I scared?  Absolutely.  Am I sure this is going to work?  No.  But, there is a moment when I know I need to give it a shot.  To take the leap.  So, I’m going to step into it and keep trusting I’ve made the best decision I can at the time.

This is my story.  Everyone’s story is different – a story unique to their lives. If you have a moment, please share your story, your process when  a “fork” shows up in your life.  Keep advocating.  Keep trusting yourself.  #trustyourself  #askforwhatyouneed #trustyourdoctorbutnotthatmuch





April 13, 2017

My girlfriend, Carolyn, is a creative and a do-it-yourself woman. She’s always working on something in her home or just for fun in someone else’s. I’ve seen her up on a ladder creating gorgeous faux painting, installing a new toilet in her powder room and watched as she created the most beautifully decorated Xmas tree. All the while that Carolyn is busy with her projects, she’s in her home alone.

Several weeks ago while she was up on a ladder “creating” she had an epiphany. “What if I fall in my home while I’m alone? There will be no one here to help me. They’ll only know I’ve fallen, banged my head and died when the neighbors detect a strange odor!”

She’s not ready for the “I’ve fallen and I can’t get up” button to wear on a chain around her neck, but there is something she can do to feel safer – keep her cell phone on her when she’s working around her home alone with tools, ladders, shovels, rakes inside or outside her home. Anyone working by themselves can stick their cell phone in their pocket, tuck it into her bra or waistband of her pants. In 2017 we would be hard pressed to find someone who doesn’t have a cell phone between the ages of 5-100! I’ve seen kids so little they’re still in strollers playing on their mom’s cell phone while she shops!

Young or old we all “speak” cell phone and carry them with us as if we were expecting a call from the president.  Best use to of that device would be to keep it on us whenever we’re working on a project and there’s no one else around.  Or, you can get that “I’ve fallen and I can’t get up” button.  Nah!  I don’t think so.

#whywaitThursday  #haveyourcellonyouwhenclimbingthatladder #Trustyourdoctorbutnotthatmuch  #askforwhatyouneed #DIYkeepyourphoneonyou

Accentuate the Positive

April 6, 2017

As a patient, positive support means everything.  I know it has to me.  Fortunately, many friends and family members provide the love and support I need to help me through the treatment.  Like all patients know going through it, treatment can be challenging, difficult, bumpy and just plain depressing.  When you’ve got family and friends there for you cheering you on it makes the journey far less arduous.

So, why then do people tell you the sad, dramatic and often scary stories of what has happened to someone else who has the same illness (or they think has the same illness!) as you do?  I don’t know why, but they do.  It seems these stories come to mind and before they’re aware of it, the story comes spewing out of their mouth.  Whether the story is true, false or like the old game telephone, by the time you hear it the facts of the story have changed so many times it doesn’t even resemble the original account.  If your Aunt Matilda brother’s uncle’s cousin (you get it) told you this story, you may want to consider the source and even more importantly, what impact the story is going to have on a patient.  As I’ve said before, patients have enough “stuff” and questions going on in their own heads without any additional scary stuff increasing the volume.

Here’s what happened to me. Many years ago while I was having a great time at a wedding a friend told me her husband bled to death from the very same illness I had!  Try to enjoy the wedding after that!  Thankfully, I’ve not had the same issue, but I can tell you that story has been hard to forget, but I have realized it is not my story.  Sadly, it belonged to the man who experienced it. But,once heard there it is.  I realize people don’t mean to frighten you or wish you ill.  They simply speak first – almost unconsciously – without grasping the impact their words have on patients.  Well, those words have a very long half-life and are not easily forgotten.

Instead, why not choose uplifting words or stories to support those who need to hear them.  Before telling those dramatic, worrisome stories to a patient, why not give some thought to how those words will be received. Words of love, support and oftentimes, no words at all are just what the doctor ordered.