Monday, June 3, 2019

Reaching for the Sky


     It's no secret that 2018 was a terrible year for me.  Recovery has been my toughest physical challenge ever...harder than stage 4 cancer.  

     What I didn't appreciate until several months into my year of rehabilitation, was how my psyche had taken a hit.  In my continuous effort to balance that triad (my mind, body and spirit), I realized that, although my body was on its way to recovery, my mind and spirit were lagging behind.  It was as if I was experiencing some version of PTSD.    

      I have a good support system...family and friends.  But, despite many long conversations, questions about why my femur broke and indescribable uneasiness about my traumatic 2018 remained close to the surface of my consciousness. So, I did two things:
  • #1 - I made an appointment with a counselor
  • #2 - I made an appointment with the surgeon who did my first hip replacement
     I've sought counseling assistance to navigate my life, every so often, since my early twenties.  It was during graduate school (for genetic counseling) that I learned that talk therapy adds a different, and most times, healthier perspective. With my hip/femur trauma and cancer, coupled with life's other "stuff", what better time to seek another perspective of this overwhelming life of mine.  It has definitely helped me and I recommend it for anyone who finds themselves in "that" place.  You know. 

      It was also important that I met with the surgeon.  (Not only was he the guy who did the initial hip replacement, but he's also the attending physician that decided not to get an X-ray despite me telling his resident that I heard a "clunk" and had shooting pain down my leg on my maiden walk).  He was clearly nervous when he came into the meeting and started out, not unexpectedly, defensive.  I told him that I needed him to hear what happened to me...from me, (without interruptions), and that I had questions I needed answers to.  With hands up, palms facing me, he said, "OK...I'm listening."  I was sure he knew what had happened to me after that initial surgery.  My second surgeon is his partner and I was told they had communicated about me.  In any case, I wanted, needed, him to hear how each complication affected me and my family.  Wynn and I asked him a slew of very specific questions about my surgery...what he did and how he did it.  His answers were, in turn, very detailed.  When he finished, I asked, "So why did I fracture?" and he said, "I don't know."  

      We let him know that throughout the whole ordeal, the only person on his team to apologize was his physician assistant, who said that she was sorry this was happening to me.  We read no admission of guilt in her apology, only genuine sadness. He tried to remind us that he had apologized when he came to see me in the hospital, but we told him we recall his contrition and were hoping to hear the words, "I'm sorry" from him, but didn't. He said, "Well, if I didn't say it before, I'm saying it now.  I'm sorry.  I think about you all the time, wish I had ordered an X-ray, and have changed how I practice because of you."  So we said, "Like how?" 
  • #1 - He has lowered his standards for ordering an X-ray.  
  • #2 - Rather than having a check list for patients' benchmarks for discharge after his surgeries, [ie. Can walk 20 yards with a walker, Can walk up and down one flight of stairs, etc.], he now attaches quality measures [How well did the patient do these tasks?, and What is the patient's pain score when doing these tasks?] 
     Given that the guy doesn't know why I fractured, I have to swallow, yet another, pill of uncertainty.  Before the surgery, I recall a thorough consent discussion about risks, benefits and limitations.  And although I don't specifically recall any discussion about the possibility of a femur fracture, because I have metastatic disease in my femoral heads, I understand that this could happen.  Our discussion with the surgeon helped me put to rest the question of whether, or not, major mistakes occurred during surgery.

     Before this meeting, I thought about how the interaction might go.  And since then, I've spend more time contemplating how I feel and how I can move forward.  I have come to a place where I can live with more uncertainty, mostly since he was a nice guy about hearing me out, answering our questions, apologizing, and letting us know what he's learned from his experience with me.  I hope that, at minimum, he is a better doctor.  I feel that I'm on the path to finding my peace and hope I can successfully put 2018 behind me.

 



     It's not possible for me to come across a living thing, like this tree, without seeing some symbolic meaning.  I found this tree on the trail to ShiShi Beach on the Olympic Peninsula.  Look how it fell over, then contorted and twisted itself to continue to grow.  It looks like it had to work hard and stay the course to keep living.





     The center trunk in this picture is the top portion of the twisted tree above.  After some obvious challenges, it reached for the sky and grew tall and strong.  

     I hope I can do the same.

... Wish me luck.

Monday, April 29, 2019

What a Difference a Year Makes



Regal bald eagle, Olympic Peninsula, WA

     April, 2018...the lost month.  During the last week of March (2018), I had two major surgeries, and a third one in mid-April.  I spent all of April in the hospital and by the time I returned home, I had lost 20 pounds and was so weak that I struggled to sit up.  The only way I was able to get around my house was with a walker. A WALKER!

     
     In early May, I started going to physical therapy three days a week.  Initially, even getting to PT was a big deal...I was never sure I could get up and get my ass in the car. I had to prep myself before each appointment with a nap, and came home from each session needing another.  That went on for weeks.

     Incrementally, I got stronger and incrementally, I became hopeful.  Since then, I've been committed to exercising every day. I am stronger.  On most days, I don't need my cane, (except to go upstairs in my house).  I'm still a bit clumsy and trip fairly often, especially when fatigued.  I gained some weight back, which I needed to do in order to build stamina.  Overall, I'm doing OK.

Port Townsend


     April, 2019, has been much different. During the first week, combining work with pleasure, I spent three days with my dear friend, Stefanie, hanging around the Olympic Peninsula. We shopped, went on long walks, and hiked near ShiShi Beach. Then I  attended a genetics conference in Seattle.

 






     This is the trail to ShiShi Beach.  It's a 4-mile hike from the parking lot to the beach and back.  I didn't make it this time.  We arrived mid-afternoon and I didn't have the strength nor speed to get to the beach and back by sundown. So...I guess I need to go back when I'm stronger. I'm happy to try again.






 
     


     I came home for one week, then Wynn, Nina and I flew to Lisbon, Portugal.  Nathan and his girlfriend, Banshamlak, flew from Israel to meet us for part of the time. It was a glorious trip - not only because Portugal is beautiful and fascinating with a long, rich history and friendly people, but because we were together. From Magellan to the soccer superstar, Ronaldo, the Portuguese have lots to showcase.  It's a profoundly Roman Catholic country and we were told that 97% (that's a lot) identify as such. 


The Church of Sao Francisco



     The day after flying into Lisbon we took a train north to Porto, Portugal's second largest city.  This is a spectacular church in the heart of Porto.  Its (overly) ornate everything speaks to Portugal's history of exploration and colonization of other countries, then bringing riches home to decorate; a common practice back then.  









      On day 2 in Porto, we hired a guide to take us to the Douro Valley - the place in the world where port wines are made.  The hills along the Douro River were terraced hundreds of years ago and the terrace walls are protected by the UNESCO Heritage Foundation.  Grapes are grown in this valley, made into port wines, (wine with grappa or brandy as a preservative), then trucked an hour and a half to Porto to age in the cooler seaside air.

      We visited two vineyards; one small, family-run vineyard called Marrocos, where the operations are very different than larger ones, but both still stomp the grapes by feet. Because there are very large vineyards, some owned by foreign entities, there is a controlling body called the Port Wine Institute that regulates everything - how much wine is produced at each vineyard, the types of

grapes grown, the quality and distribution.  Each
legitimate bottle has an Institute sticker. We were told that the Institute protects the smaller vineyards from being bought out by the larger ones.
       We also visited and tasted ports at a large, British-owned vineyard called Croft.  Port wines are sweet, and I loved them.





     One of my favorite parts about traveling is noticing local residents.  This man is a friend of our guide and has lived in this region his whole life.  When I asked him if I could take his picture he said, "Why not?!"...in a charming Portuguese accent.

     No hotel rooms on this trip...we rented AirBnB apartments.  Although we ate out a lot, we enjoyed shopping at local markets for a few home cooked meals.  This is the garden of the place we stayed at in Porto.  That's Nina sitting and planning our day with the Douro River and Vila de Gaia, the city across the river from Porto, in the background.

Wynn




     We planned our trip a la Rick Steves' Portugal travel book.  We did several walking tours he suggested, which brought us to this beautiful city park.


     We walked across the bridge from Porto to Vila de Gaia.  In the olden days, these boats brought the port wine barrels from the Douro Valley to Vila de Gaia to age.  You can go to tasting rooms here, too, and the view of Porto from this side of the Douro River is beautiful.




Drinking cherry liqueur in chocolate cups is a thing in Portugal.  It's called Ginja, and is a great treat anytime of the day!

     The Portuguese love painted tiles and mosaic sidewalks.  This is just one example of the hundreds, perhaps thousands, of miles of mosaic sidewalks in this country.  Most streets are cobblestone and since they are so old, some are very uneven.  I saw several people turn an ankle while strolling along.  I may have missed a few sights because I was looking down while walking.  





     We walked through an open market one day.  The fresh finds were mouth watering.

     After a few days in Porto, we returned to Lisbon to meet Nathan and his girlfriend.




     This is the Monastery of Jeromimos in the Belem area of Lisbon.  It's massive.  If size and grandiose-ness was the measure of importance to these people, then religion was paramount. 





     This is a view of the church's dome from inside the monastery's courtyard. The Moorish architecture is throughout and like most all old churches in Portugal, the insides are covered in gold leaf.

     Close to the Monastery, on the banks of the Tagus River, is Padrão dos Descobrimentos, the Monument to the Discoveries.  It was built in 1960 and you can appreciate its size by the people in the bottom of this picture.  Henry the Navigator is at the tip with the likes of Magellan and Vasco de Gama represented.  It's also massive,  so discoverers must be important to the Portuguese as well.

 




     We spent a day with a guide, Hugo Martins, who took us to Sintra, Portugal.  It was a 20-30 minute drive from Lisbon and is home to many old palaces, castles, and beautiful parks.  On the top of the hill behind us is the Pena Palace.













     This is  the mansion and grounds of Quinta da Regaleira.  A really rich guy built this 19th century gothic home, gardens and chapel.  It's another UNESCO World Heritage site.






Nina and me









     This is the Initiation Well (Poço Iniciáticoin) at Quinta da Regaleira...






...and this is a view of the garden from the mansion.










Nathan and me




     




     Our guide, Hugo, drove us back to Lisbon along the Atlantic coast.




     I took this picture on the last day in Lisbon.  It's from the bedroom window of our AirBnB.  I love the sky, the church, and view of the Atlantic Ocean...note the ginormous cruise ship.



     This trip was really special to me.  Portugal is a hilly place with very steep streets in Lisbon and Porto.  Despite pushing myself to walk a little faster, go a little further, and stay up a little later,  I am certain I was still the limiting factor in some of the activities the rest of my family wanted to do.  But you know what...no one complained!  We all did our best to make this trip memorable...if for no other reason than there were no blowout arguments 😀. 

Friday, December 7, 2018

My 60th Year...what a doozy.

     Today is my birthday.  I am 60 years old and am delighted to be alive.  Really. Since I started blogging in 2012, I've been able to get to a happy place about my birthday.  I've been grateful about living, surrounded by my incredible posse of family and friends.  This birthday feels different because, without a doubt, this past year been the most acutely challenging year of my life.  All three parts of that "triad" I often refer to, (my mind, body, and spirit), were beaten up...beyond recognition.  

      Since my diagnosis, my health challenge has been my cancer. This past year, however, my life has been consumed with recovering from an elective hip replacement, and every conceivable complication possible, including a femur fracture, crazy infection, blood clots and internal bleeding.  It has now been 8 months since the last of three surgeries I had in 2018, and despite my total commitment to rehab, it has only been about a month since I've been able to walk without a cane.  

     Everyone's heard that old the proverb, "with age, comes wisdom", and during this past year I've aged, and had the opportunity to grasp a few of those pearls. I'm writing them down to share with my children, Nathan and Nina.   

     #1.  Shit happens...despite good planning.  I did my due diligence and scheduled surgery with the best orthopedic surgeon I could find. Shit still happened. 

     #2.  Weakness begets weakness.  Very soon after my femur broke and well into my rehab, I experienced indescribable fatigue, loss of muscle mass, and dwindling mental fortitude. The weaker I got, the weaker I got.  
     #3.  Strength begets strength. Rebuilding one's body takes a long time and requires the patience that often escapes me.  Somewhere along the rehab road I realized that I had less pain and more strength.  And then there were/are days when I only have pain because I've pushed myself too hard in workouts; a hazard of impatience.  But the pearl of wisdom I hold onto the hardest is that the stronger I get, the stronger I can get.  Strength builds upon itself.   

     #4.  When maintained, our bodies are amazing machines. I thought for sure that my body wouldn't be able to recover from my hip replacement/femur fracture fiasco and fight cancer.  I was wrong. 

     #5.  In a strong family, life doesn't happen in a vacuum.  A few days ago I told Wynn that 2018 has been the worst year of my life. He responded, "Mine, too." 

     So for this birthday, I'm going to do my best to look forward to my 61st birthday and hopefully by then, I'll be able to get back to that, more celebratory, place.  In the mean time, wish me luck!

Oh...also...

     In celebration of living with stage 4 lung cancer for 6 years now, I am raising funds for further lung cancer research - the kind of research that is keeping me alive.  If you can, please consider making a donation that will advance research in ROS1-mutation driven lung cancers - a rare cause of the #1 cancer killer.  Here's a link:

 



...and THANK YOU!


Thursday, November 8, 2018

Change is Good




Remember this?

Palatine police arrest Dr. Wynn Sheade as he and about 400 others protested Saturday outside the Palatine Township Republican Organization office in Palatine while U.S. Rep. Peter Roskam was inside talking to organization members.
Daily Herald, February 5, 2017.  Courtesy of Sanford Morganstein


     In early 2017, I blogged about my husband getting arrested while trying to attend a meeting with our Congressman, Peter Roskam - who was in our town to discuss healthcare and the Affordable Care Act.



Get this...


"Democrat Sean Casten declares victory over U.S. Rep. Peter Roskam in pivotal 6th Congressional District"
Chicago Tribune, November 6, 2018, 10:55 PM 
 
 
     Wynn and I worked hard to defeat Roskam. We attended candidate forums and "meet and greets".  We put our money where our mouths were.  We both phone banked for the Casten campaign and Wynn canvassed nearly every weekend in the months preceding election day.  Roskam voted 60 times against protections for Americans with pre-existing conditions - and we needed him out.    

'NUF SAID.

 

Tuesday, October 30, 2018

VOTE, Like Your Life Depends On It...



    ...because it does. 

Tuesday, November 6th is Election Day 

     
     For me, I'm voting for IL-6th District Congressional candidate, Sean Casten.  He's a new comer to politics - he's never held an elected position before.  He's a scientist and clean energy entrepreneur, which speaks to my passion to protect our environment for generations to come. But more urgently for me and for all cancer patients, Sean Casten supports protecting the pre-existing conditions clause in the Affordable Care Act, (ACA).  If insurance companies are allowed to drop members with pre-existing conditions, I will die.  No drama here, I mean it.  My medication costs $15,000/ month and if I lose my health insurance because I have cancer, I won't be able to afford my lifesaving oral chemotherapy on my own.

     Casten's opponent is our incumbent Congressman, Peter Roskam.  He's voted 60 times to allow insurance companies to drop members with pre-existing conditions.

     Take a quick glance at this list of pre-existing conditions under the GOP health plan proposed last year.  It was published by Business Insider in an article by Lydia Ramsey on May 5, 2017.  With the conditions listed here, the Kaiser Family Foundation estimates that 27% of Americans under age 65 years could become ineligible to get health insurance.

AIDS/HIV
Lupus
Alcohol/drug abuse with recent treatment
Severe mental disorders such as bipolar disorder or an eating disorder
Alzheimer's/dementia
Multiple sclerosis
Rheumatoid arthritis
Fibromyalgia and other inflammatory joint disease
Muscular dystrophy
Cancer
Severe obesity
Cerebral palsy
Organ transplant
Congestive heart failure
Paraplegia
Coronary artery/heart disease
Bypass surgery
Paralysis
Crohn's disease/ulcerative colitis
Parkinson's disease
Chronic obstructive pulmonary disease/emphysema
Pending surgery or hospitalization
Diabetes mellitus
Pneumocystis pneumonia
Epilepsy
Pregnancy or expectant parent
Hemophilia
Sleep apnea
Hepatitis C
Stroke
Kidney disease
Renal failure
Transsexualism

     Below is a list of other conditions that could make it harder, (more expensive), to purchase a health insurance plan, according to the Kaiser Family Foundation.

Acne
Allergies
Anxiety
Asthma
Basal cell skin cancer 
(a type of skin cancer that doesn't tend to spread)
Depression
Ear infections
Fractures
High cholesterol
Hypertension
Incontinence
Joint injuries
Kidney stones
Menstrual irregularities
Migraine headaches
Being overweight
Restless leg syndrome
Tonsillitis
Urinary tract infections
Varicose veins
Vertigo.

     The above lists are exhaustive.  (They left off hangnails.) EVERYONE at some point in life will have at least one of the above conditions, and if not you, someone you love will.

     Please VOTE for Congressional and Senatorial candidates that will ensure health care for all Americans and protecting those of us with pre-existing conditions. 

Find out what District you're in and who your Congressman is:  https://www.house.gov/representatives/find-your-representative

Find out who your Senator is:  https://www.senate.gov/general/contact_information/senators_cfm.cfm

Do your homework to learn about the candidates and  

VOTE!

     Other Illinois Congressional Candidates in my area that support protecting the pre-existing conditions clause in the ACA:
Image result for Raja Krishnamoorthi for congress logo
RajaforCongress.com
Raja Krishnamoorthi is the incumbent for IL-8th District.  He has a consistent record for protecting Americans with pre-existing conditions.


Image result for lauren underwood for congress logo
UnderwoodforCongress.com
 Lauren Underwood is the candidate running against incumbent, Randy Hultgren, in the IL-14th District race.  Hultgren votes against pre-existing condition protections.  Underwood, a registered nurse with a pre-existing heart condition, shares my fears of losing health insurance. 
 

Saturday, October 20, 2018

Update: Summer Setback, Fall Recovery

     This update is definitely overdue.  Thank you to friends who have contacted me to see how I am doing because I haven't posted a blog in a while.  

     I'm much better now.  July was another rough month.  Back in April I had a deep vein thrombosis, (DVT), and pulmonary emboli (PE) - following my series of surgeries and subsequent inactivity.  Anticoagulant therapy is standard following such clotting events. While still in the hospital, I was on a continuous heparin IV for a few days and went home on an injectable form of heparin called Lovenox.  Lovenox is no fun...either Wynn or I had to give me a shot in my lower abdomen, twice a day.  Being on multiple medications can be problematic and I started getting large hematomas at the sites where I got injections.  They were numerous and painful.  My hematologist, (who is also my oncologist), checked into alternative anticoagulants.  My choices were limited because I was on several medications that have adverse interactions with the alternatives.  We settled on an old, stand-by medication called Coumadin, which can be tricky.  The actions of Coumadin are influenced by dietary Vitamin K - which is in many foods that I eat, (ie. green leafy veggies, cabbage, brussels sprouts, etc.).  I was told to eat my usual diet and come in for blood testing a couple times per week and the Coumadin dosing would be adjusted to keep it at a therapeutic level. After a few weeks of adjustments, the sweet spot was found and blood monitoring became far less frequent.

     I was good, for about a month.  Then in mid-July I had internal bleeding causing my hemoglobin level to fall to 6 g/dL, requiring a few units of blood and a 5-day stay in the hospital...4 in the ICU. Coumadin was discontinued the day I was admitted, followed by an upper endoscopy, colonoscopy, and flexible sigmoidoscopy.  No source of bleeding was determined...but thankfully, the bleeding stopped.  The GI specialist recommended not doing anything, for now, unless I have another bleeding event.  

      The next question was whether or not to restart the anticoagulant.  The opinion of two oncologist/hematologists was to stop the anticoagulant because despite knowing that cancer patients have an increased risk of clots, for the 5+ years prior to my hip surgeries, I’d never had one.  They felt that my clotting event was far more likely to be related to my surgeries and inactivity than my cancer.  On the other hand, the GI specialist thought that I should go back on an anticoagulant because a GI bleed is more survivable than a pulmonary emboli. (I really hate it when my doctors have differing opinions.  I go to the doctors I go to because I trust each of them.)

      With trepidation, I stopped the anticoagulant.  Making the assumption that my clots were associated with my surgeries, the standard duration for anticoagulant therapy is 12 weeks.  I took them for 11 weeks before my bleed, so the two oncologist/hematologists felt that that was "close enough."  (If thought to be associated with my cancer, I would be on an anticoagulant for the rest of my life.)  However, I was, and am, nervous of getting another PE.  So...I bought an Apple Watch.  Prior to discovering my PE in the hospital the first thing I noticed before becoming short of breath was my rising resting heart rate.  Now I can check my resting heart rate everyday and make a mental note.  Maybe I can catch another PE early, before becoming symptomatic or dying suddenly. 

     Physical therapy has been vital to my recovery.  In the beginning, I went 3 times per week.  When I returned to work I scaled back to 2 times a week.  I, however, did the exercises the PT instructed me to do everyday.  Earlier this month I was discharged, after five months.  Although I was still walking with a limp, my PT and PT Assistant felt I had all the mechanics for a successful recovery, and that I just needed to get stronger.  I continue to workout on a daily basis, and I'm happy to report that my limp is definitely becoming less pronounced.  

     After going through three surgeries, joint infection, DVT and PE and spending a month in the hospital, I was very worried that my body would not be able to continue to fend off my cancer.  My last brain MRI and CT scans were in July.  I'm so relieved to report that all imaging and blood work indicate that my cancer continues to be stable on Xalkori.  My next series of MRI and scans are coming up in November.  

     Thanks again, everyone, for continuing to reach out to make sure I'm OK.    

Recent visits with friends and my brother-in-law:


     
     This past summer, we enjoyed a nice dinner with Laurie and her son, Jaime, who is working in Chicago until the mid-term elections.  

                   

                  Stephanie came to visit twice this year!  Along with Laurie, we all met in grad school...37 years ago.
                     


     Although we missed my sister-in-law, Tracey, on this trip, my brother-in-law, Bruce, met us in VT to enjoy the Fall colors.  If you haven't been to VT in the Fall, put it on your bucket list.  Burlington is a city with a great vibe!


     With other lung cancer ninjas at the Lungevity Hope Summit in Chicago, 2018.





       Kerry and I have been friends since junior high.  While on a road trip to the East Coast, he stopped by for a visit and joined us to see Nathan's comedy showcase. 









     Enjoyed an afternoon with Bill and Gwen...friends from my college days.  




 



      Dear family friend, Sumi, made a stop in Chicago on her way to Omaha and her 55th high school reunion.  Go Eagles!



 

     Family and friends...old and new...continue to make my very complicated life so do-able.  I couldn't be more grateful for their support.

Friday, June 22, 2018

"Who's My Quarterback?"...Navigating In-patient Care

     My recent surgeries and extended stays in the hospital were an eye opener into our in-patient healthcare system.  Despite the doctor missing my fractured femur, I feel I otherwise got good medical care.  But, I sometimes also felt confused and overwhelmed.  There was a team of physicians who saw me during my admissions:
  • Hospitalists, (5 different ones)
  • Surgeon, and surgical residents
  • Oncologist/Hematologist
  • Infectious Disease specialists, (5 different ones)
     The hospital is a large medical center and teaching hospital, so I expected there to be residents and medical students.  What I didn't expect was the number of different attendings that would be involved in my care, and my resulting confusion...I needed a medical point person. With so many physicians coming to see me every day, I started to ask them each, “Who's my quarterback?"  Interestingly, there wasn't one answer.  Most said it was the hospitalist, but two of the hospitalists said it was my surgeon. 

Here are a few highlight experiences:

     1- Every time I met a new hospitalist, I had to tell them my long and complicated medical history...including my stage 4 cancer diagnosis, hip replacement, femur fracture, and multiple complications.  Each hospitalist seemed to know some parts of my history, but none knew my whole story.  I wanted to trust that they had each read my chart, but it didn't seem like it.

     2- Although I only dealt with one attending surgeon at a time, there were 4 orthopedic surgery residents that I saw. Of the groups of doctors, this sub-team seemed to have the best communication between each other and with me.  But, there was confusion about which analgesic medications I should be taking since a few of them wrote orders for different pain meds.  In total, I was offered 6 analgesics: Norco, acetaminophen, oxycodone, tramadol, gabapentin, and Celebrex. If I was inclined to do so, I could have taken all of them.  (Any questions why we have an opioid problem in this country?)  Not knowing which painkiller was the best for me, I asked to speak to a Pharm D., who came to see me after she had reviewed my chart and pain scores.  I told her I would ideally like to be on a non-narcotic agent that would treat mild to moderate pain.  After a long discussion and based on the type of pain I was experiencing, we settled on gabapentin and tramadol, (a milder narcotic.) I took the reins on this one.

      3-  A day or two after my 3rd surgery, a nurse came into my room with an arm-load of IV supplies.  She told me that Dr. ??? (I didn't catch the name) called in an order for an IV medication and she was there to start it.  I told her that there must be some mistake because I've never seen Dr. ???.  The nurse told me that Dr. ??? is an infectious disease specialist.  I clarified that I had never met Dr. ??? and would never agree to an IV medication ordered by a doctor who had never examined me nor spoken to me.  The nurse paused, stared at me for a moment, then turned and walked out of my room with her armload of IV supplies.  Several hours later Dr. ??? came to my room, introduced herself and explained the need to start the IV medication.  With this discussion, I understood, and it was started.  

     4-  I'm on 7 medications now and when I was in the hospital, I was on a few more.  I became concerned about the interactive effects of being on multiple medications.  I Googled "drug interactions" and there are several helpful resources.  Input your medications and they give very important information about the effects of multiple medication use. I encourage everyone to check out their meds.  Here's one site:

https://www.drugs.com/drug_interactions.html


     In theory, the hospitalist, (usually an internal medicine physician), coordinates an in-patient's care.  In my experience, because a different hospitalist came to see me on most days, the care felt very fragmented.  In a move of necessity, I became my own quarterback.  I got a notebook and wrote down everything...medications I took and the time I took them, the names of the physicians who came to see me and what they said, when I went to physical and occupational therapies, my vitals (blood pressure, heart rate, temperature), and how I felt that day.  This detailed log turned out to be very helpful to me and my doctors.  Some, rather than reading my chart would ask me their question, I would reference my notes, and decisions were made.  I will always bring a notebook to any planned in-patient stay I may have in the future.  

     
  
     Medical care has become very specialized...so specialized that specialists don't always seem to have the ability or time to see the big picture of the patient.  Additionally, in my experience, hospitalists are spread thin and were not able to make me feel assured that they were coordinating my care.  So I say, 

             "BE YOUR OWN QUARTERBACK!"