Thursday, October 19, 2017

How I Became a Health care Consumer and not Just a Patient - Part 4

When I go to the doctor's office, hospital or clinic, I don't think of myself as a "patient" in the traditional sense of the word anymore. I don't think of medical professionals as omnipotent beings oozing with right judgment and wisdom with my best interest in the forefront either. But it took a while to get here - decades in fact. Over the next few posts, I'm going to explore how I got to this point in my life for myself and my family.

Part 1

Part 2

Part 3

Mama circa 1950?

My Mom was a DES mother.

We found out about this as she was reminiscing informally about her pregnancies and the care she received as a young wife and mother back in the early 1960s. And, we were horrified.

Rightly so. 

My own medical experiences aren't as dramatic as my mom's but they still affected me profoundly.

After high school I enrolled in a Medical Assistant program and got a job as an x-ray clerk in a local hospital. Most of the people I worked with were wonderful and I have fond memories of that time.
Aside from a doctor telling my supervisor that I had used profanity (I was 19 at the time and too afraid to speak out on the job let alone swear!) and another doctor making a pass at me during my medical assistant internship, I hadn't had any personal bad medical experiences at the hands of medical personnel.

And then I had my first birth experience which I also consider a sexual assault. 


When my first son was born, an OB at the hospital came in and announced that he was going to break my water. There was no discussion following that even resembling informed consent! He put his hand inside of me to break my water and when he complained that I was "breaking his wrist" the two students, or residents (I'm not even really sure who they were) both forcibly grabbed and opened my legs, so that he could force his hand further inside of me. My husband watched in horror. I felt humiliated and was in a lot of pain. I later felt that what I experienced must be very close to what it would be like to be raped. 



But that experience made me start questioning everything.

 I tried to put it behind me. I healed from the surgery, I had a healthy baby, and I never wanted to give birth again. Problem solved. By chance I found the book A Good Birth, A Safe Birth, in the grocery store of all places! I started reading about the interventions and and things that happened to me and realized that it hadn't been all good or even all necessary!  My life and my perspective changed by the time I finished the pages.  


I no longer trusted blindly and followed unquestionably. I researched circumcision, immunizations, breastfeeding - basically everything about having a baby and raising a child. I read both sides and followed my own instincts, which were usually right.


A few years ago this paid off for me. In 2013, I was diagnosed with ulcerative colitis. I blogged about that here. 


Last fall things were going pretty normally for me health wise until I developed an unexpected infection that required a course of two antibiotics.  I carefully read both of the drug inserts when I got home and read that one of the antibiotics cautioned that it could cause rectal bleeding and if that occurred, I should contact the hospital immediately.

Well, I'm glad I read the insert because the next day, I did experience a lot of bleeding - the kind of bleeding you never want to see when you go to the bathroom. When the bleeding wouldn't go away on its own, and because I was over 50, I was scheduled for a colonoscopy. That's how I found out that I had ulcerative colitis. That's also how my journey to better self-care started.

In followup after the colonoscopy, my new GI doctor prescribed steroidal enemas, and another drug, Asacol, to keep the condition under control. When I asked him if there was something I could do to my diet to help heal, he said there was nothing I could do. 

And that just didn't ring true to me.  How could it be that food wouldn't affect the digestive system in either a good or bad way?  So I took my prescriptions and filled the enemas, but held off on the other one because it was over $400.  Instead I took to the internet and the library for answers.

UC granularity.png What I learned easily on my own made a lot of sense.  I learned that most of our immune system is in the digestive system where our good bacteria and bad bacterial live in perfect balance.  Antibiotics to kill of bad bacteria certainly affect the good bacteria as well, and as that good bacteria helps to keep the lining of our colons protected, it makes sense that killing that off would cause problems like bleeding!  When I asked my doctor about that he said he had never heard that before, but in several ulcerative colitis forums I read the stories of ulcerative colitis patients who started to have bleedingAFTER taking antibiotics.  How could it not have an effect?


I have been gluten free now for four years. And while I may cheat and have an occasional nibble here or there, bread is no longer a staple in my diet. I have greatly reduced my sugar intake. But most importantly, I remain prescription drug-free and symptom-free as well.


I share all of this with the hope that my kids will read this one day when they have to make their own medical decisions. It's great to live in an age when we have so many technological advantages. But you only get one body and you have to live with the medical choices you make, and sometimes there is no turning back.

I'm not anti-medicine, anti-vaccine, anti-hospital birth, or anti-surgery. I think all of those things can be important tools in healthcare. What I am is pro-informed consent. And luckily one of the other benefits of living in a technological age is the ease of looking at a treatment plan or medication and learning as much as possible about that choice.

We will all die one day. I will die one day. I accept that. But my goal is to live out the rest of my days in the best possible state of health as naturally as possible with a dependence on God as the greatest healer, and seeking wise medical help when necessary.

Wednesday, October 18, 2017

How I Became a Health Care Consumer, and not Just a Patient Part 3

When I go to the doctor's office, hospital or clinic, I don't think of myself as a "patient" in the traditional sense of the word anymore. I don't think of medical professionals as omnipotent beings oozing with right judgment and wisdom with my best interest in the forefront either. But it took a while to get here - decades in fact. Over the next few posts, I'm going to explore how I got to this point in my life for myself and my family.

Part 1

Part 2

My mother was living in rural northern New Mexico when she noted blood in her urine consistently. After a workup and a referral to a urologist, she was diagnosed with bladder cancer and underwent a bladder surgery. At the time I  was living on the other side of the country and pregnant with my 4th child. I only heard about her condition when she could update me and I do remember getting at least one phone call from her urologist.

But Mom's phone calls started sounding a little weird. She had stents placed in her bladder that extended through her urethra. When she talked to my sister about these stents she was alarmed and called them "snakes."  There were other things about the way she spoke that made us worry about her mentally. I wrote about that period of time here. 


A few months later, Sis mentioned to me that Mom wasn't sounding right on the phone. Her conversation sounded nonsensical and she just wasn't being herself.  After talking to mom myself, I agreed that something was a little "off" about her, but I wasn't alarmed until I tried to call mom and discovered that her phone had been shut off for nonpayment! That really was not like my mother to let her bills go! I wondered if her cancer was back and causing problems with dementia.

In a panic, I called the phone company and got her phone back on.  Then I called my mother to find out what was wrong.  And she couldn't tell me.  In fact, she said she just didn't have much energy and couldn't talk.  This really concerned me.

... she gave my mother an empty suitcase and popped her on a train towards Ohio.

Mr. Pete and I were stunned by her appearance.  She was disheveled, she smelled bad and she was swimming in clothes that were much too large for her.  And aside from all that, Lucia had put her on a train in the winter time without a coat. 


We discovered that my mother had a large frontal meningioma - a brain tumor. From that moment on, I found myself in a new and uncomfortable role in my life - advocate for my mother's health care.

A couple of things happened in the process of getting her diagnosed and treated. First of all, no one was really able to diagnose this quickly when she first arrived. When she accidentally set her apartment on fire we did find a psychiatrist who was willing to put her in a psychiatric ward. but it was a family practitioner who finally ordered the scans that found the tumor. But he even did them reluctantly after I started asking about getting a CAT scan.

When she was in the middle of her 15-hour surgery to have this tumor removed, the exhausted surgeon came in and talked to me about my mother's age. She was only 69. If she had been older he would have considered cutting the optic nerve to reduce the surgical time. I begged him not to do that and he complied. That was one of the oddest conversations I have ever had in my life.

She survived this surgery well and started to have a more normal affect. Unfortunately, because she was under anesthesia for so long with her arm extended for blood pressure and IVs etc, she suffered a brachial plexus injury. Simply put, if someone had thought to move her extended arm sometime during the surgery, she would have not only survived the surgery unscathed, but she would have had a pain free recovery. Because of this injury, she was in constant pain and could no longer feel her little finger and lost some of the strength needed to play the piano.

This is now the second family member I had to lose important function in their hands due to surgery. I took note.

During mom's recovery in the ICU, I noticed some things too. The nurses and technicians who were caring for mom didn't seem to regard her as a person. I realize that they were super busy and had a lot of responsibility for all of the patient's in ICU, but I wanted them to see my mother as she was before the surgery. So I made a poster. I blogged about that here.  


In 1998 my mother had a very large brain tumor removed and spent several days afterwards in a coma. I noticed while I was visiting that the caregivers were very competent, very professional, but somewhat detached from my mother. It was as if she was a body to care for but not a person. So one night my kids and I made a poster. I put a picture of her in the center in a nice dress with her hair fixed beautifully, and pictures of the kids doing funny things like swimming and playing. 
We also wrote "Get well soon" and "We love grandma" on red hearts around the picture. The next time I went to ICU, I put the poster up near her bed. Many of her nurses and caregivers saw it and smiled. They started asking me questions about my mom like, what she use to do? how many grandkids? and stuff like that. She became more personal for them, and when she finally woke up, she was pleasantly surprised to find that her caregivers already knew a little bit about her life.

During this recent hospitalization, I took a a brag book up to the hospital, and she has been sharing her family and her experiences with the nurse's aids and staff when they come to her room. Mom told me that she's had several pleasant visits with people looking at her pictures. 

Today mom will go to surgery and I plan to make another poster to hang in her room, that will speak about who she is and what her life is like while mom can't so that she will be more of a complete person to the people caring for her. I think that it is so important for them to see her as a woman with a life and loved ones instead of merely an 81-year-old cancer patient, with the goal that they will each give her the best of care. That's the plan anyway!

P1050284

Mom recovered from both the bladder cancer and the brain tumor. She was seeing a primary care doctor regularly who eventually diagnosed her with multiple myeloma. She was then under the care of an oncologist almost monthly.

Which makes me absolutely astounded that he missed the subtle but unmistakable signs of ovarian cancer. I blogged about that here.


I am writing now to let you know how disappointed I am that this was not caught sooner. I understand that there is no reliable “screening” mechanism for ovarian cancer. However, since my mother was seeing you regularly and her signs were classic for the disease AND since she already had cancer which made her at higher risk for ovarian cancer, I am astonished that this wasn’t picked up sooner.

In my opinion, you dropped the ball on this one. I don’t know if it would have made a difference if you had drawn a CA 125 earlier or if you had really listened to her and suspected ovarian cancer last December or January if it would have prolonged her life or not. But I do know that by the time it was found she was too weak to do the chemotherapy protocols and she never had a chance or a choice. And so now I am without my mother and my children no longer have a grandmother.

I know she was an 81-year-old woman with terminal cancer anyway, but before the ovarian cancer became symptomatic, she had a good, vibrant and productive life with her family and the community. Her life had meaning and was important to a lot of people. She mattered and I think it is tragic that this was not diagnosed sooner particularly since her symptoms were precisely what is presented on the Ovarian Cancer web site. I hold you partially responsible for this.

I would hope that in the future, if any other older women present this way that you would immediately suspect ovarian cancer and treat them accordingly.



Lastly, I was very disappointed with hospice care. I remember when they told us that Mom had to go on hospice and asked me which hospice care provider I wanted, I asked the nurse which one she preferred. She told me, and that's the one we went with. What I didn't know was she picked the hospice care that was BETTER FOR THE NURSING STAFF, and not necessarily best for my mother.

Once again, I blogged about that here.

I should also mention that we picked this particular hospice, Asera Care, on the recommendation of one of the nursing home nurses. I asked her which hospice was best, and she said that one.  In retrospect I should have asked her which hospice would have been best FOR MOM AND FOR US, and not for her.  The reality was the nursing staff liked Asera Care because they stayed out of their way.  I felt in some ways that mom's care fell into a limbo once hospice came on board - the nursing staff felt it was the hospice's responsibility and the hospice felt the nursing home staff  should always be responsible. It was in retrospect, a mess. 


To add insult to injury, some weeks later I got a veiled threat from the hospice care that they were going to bill me for something if I didn't come down and sign some paperwork. I made them send it - I don't think I could have been civil if I had shown up in purpose.


But it wasn't just the experiences of my elders that have shaped my views on seeking and receiving medical care. My sibling and my children and I have had some bad experiences as well.

Feast of St. Luke

Saint Luke with winged ox by Rosie.


Today is the feast day of St. Luke the Evangelist, author of the beloved Gospel of Luke, as well as the Acts of the Apostles.

St. Luke is the patron saint of artists, writers and physicians, surgeons and students, but perhaps he should also be a patron for busy wives and mothers striving to keep “orderly accounts” while making and keeping memories for and about their families and friends.


Scholars know a lot from studying the Gospel of Luke and Acts. For example, we know that St. Luke did not have the chance to know Jesus and did not have any first hand experience with Jesus’ ministry. Luke was not an apostle or a disciple. But he was a good friend of St. Paul. Scholars believe that what became the Gospel of Luke and the Acts of the Apostles was initially St. Luke’s thoroughly investigated and carefully written testimony for his friend imprisoned in Rome.

St. Luke had three special skills that assisted him in writing this account. First, he was a Gentile, not a Jew. In fact, he is the only Gentile to have authored in any part of the Bible. So his viewpoint may have been especially interesting to a non-Jewish audience.

St. Luke was also a physician (Col 4:10-14). His medical observations are sprinkled throughout his books. He uses medical terms in a way that the other writers omit; when he speaks of salt it is as a disinfectant or fertilizer. His skill in observation as a physician also transferred to his written accounts. Luke is an accurate and proven historian.

Lastly, scholars suspect that Luke was well traveled. Other accounts of the Sea of Galilee show it as massive, yet Luke refers to it as a lake! Most likely Luke had some experience with the Mediterranean and had experience with different kinds of people and cultures.

St. Luke put his talents to good use. He set out to thoroughly and completely investigate the life of Jesus Christ and the lives of his apostles. He interviewed James, John and Matthew to get their perspective. But perhaps most significantly, he was able to get the story of Jesus’ conception and birth from His mother. One can only imagine the genial physician with the comforting way and good listening skills, taking notes while Mary shares all of those special stories that she has been pondering in her heart, including the story of a 12-year-old Jesus missing in the temple and her Magnificat! How many of us long to be able to share with such an interesting and genial doctor?

Scholars also tell us that St. Luke had quite a literary knack! The parables and stories that appear in his gospel are written to appeal to a larger audience. And indeed they do! The theme of “lost and found: (from the prodigal son to the lost coin, or the lost sheep) is universal and highly relatable! But St. Luke also takes the reader into the spiritual realm by revealing God’s angels active in the lives of the Holy Family. Perhaps it his description of the shipwreck at the end of Acts of the Apostles that truly shows Luke as a master storyteller.


Tradition tells us that the good physician was also a painter and the painted some of the first icons. Hobbies enrich our lives and the lives of those around us!

It is not known how St. Luke died. Some say he attained old age, and others say he was martyred by the Romans.

On his feast day, let us contemplate St. Luke’s gospel, particularly the words of Our Lady, and inspired by St. Luke’s example, let us determine within to use the talents God has given us to bring to our lives and to our homes.

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