Mr. Ross' MRSA

Below, you'll see a link to the topic on Lumigrate by award-winning author Martine Ehrenclou related to having an advocate with a person in the hospital.  Her piece is related to the elderly, but I wanted to write about my experiences in young adulthood related to his. 

In my mid 20s, when married for several years to my boyfriend from high school, who was completing a degree in computer science, I interviewed for a new BIG job that was arranged for me to interview for by the president of the company I'd worked for, as they were having to close their doors; he knew the woman who was leaving the job to become one of the vice presidents of Colorado State University.  Considering I didn't have a bachelors yet -- I'd stopped studying business due to poor grades and 'confusion', as well as fatigue; it's hard to do college, work part time/low paying jobs with no benefits, and my husband was really going to town on his studies.  You could find him at our dining table writing computer code, beer in hand, any time of the day, unless he was with his friend he'd go do outdoorsy things with.  Once a week one of his other friends came to dinner; he went on to have a long marriage and reflected upon the way I'd been judged for what happened next and said 'you weren't being treated right, I now realize'.  You see, after he'd come back from his week-day excursion with his outdoorsy friend, I'd say 'GREAT, lets go there this weekend together', and the weekend would come and he'd be 'recovering' from too much indulgence in the evenings, or things legal and not.  That had been going on for a couple of years by the time of my interview. 

I did my best to look mature, and I'd heard the guy I was interviewing with was called "Wild Bill"; I'd met him once when he ran into an office I was working at helping out, to grab his wife to run off and do something at lunch.  I dressed like a nun almost AND wore my glasses.  I didn't want to be offered the job based on my 'looks'.  There was another man in the interview, Mr. Ross, who was very easy going and friendly.  The interview went well, I committed to working two years if I was given the job as it would take me one year to learn the job, and I really put on my straightest and SMARTEST face I could.  Apparently I left the interview and Wild Bill turned to Mr. Ross and said 'what do you think' and he said 'she's a pervert, hire her!'.  They were both from Minnesota and that was a compliment -- there was a Ziggy card that came out about that time that said 'You're sick and perverted (then you open the card) ..... I like that in a person!'.  

I was offered the job and had never been so full of JOY in my life! I was going to be making $15,000/year! We'd been living so paycheck to paycheck, with my working as a receptionist/technical typist for a small upstart company after several years at age 19-22 as a statistical typist for Colorado State University's statistics department.  (I also types many theses and dissertations on the side.)  I went to my one week of training with the exiting employee and she clued me in that Mr Ross had hydrocephalus and at age 33 had almost 10 brain surgeries for shunts -- he had a sarcastic sense of humor, is how it came up, but I think she wanted me to know so that I could keep my eyes on him related to the seizure disorder that could occur as well.  

The three of us got along well, even taking off one day when they both had ridden their motorcycles to work; I'd never been on a motorcycle and it was REALLY fun -- I rode up with one of them and back with the other.. Mr Ross had to blast down the hill for a haircut.  My husband and I were invited to go boating and camping in Nebraska with a couple he knew from school, the husband was a petroleum engineer and they had been previously working out of Salt Lake City. We didn't have a cooler so borrowed Mr Ross'.  I came down with something on the trip and was violently ill in the middle of the night and my husband didn't even know I'd left the vehicle we were sleeping in -- I was discovered 'missing' in the morning when everyone got up.  It had been a VERY long night in (and out of) the outhouse.  The other weekends, I'd say at work on Friday what I hoped to do that weekend and then we'd not go and do anything; the same thing was happening at Mr Ross' house and on Mondays we'd be like 'well, another week of work'.  

Mr Ross would often say 'life's a ______, and then you die'.  Knowing what I did about his medical condition from the previous employee, I started thinking about 'what IF this were your last weekend to be alive..... am I living my life the way I want it to be?' I started suggesting to my husband that the 'partying' be reserved for when we got together with people for birthdays and not be a regular weekend activity.  

He didn't want to change anything.  I suggested 'we' go to counseling as it was included in his student benefits and he thought 'we were doing better than ever.'  I hadn't yet learned how much power I had just for being ME.  I didn't even think of doing an ultimatum -- I felt simply that if I put a request about how I wanted my life to be with another person and that wasn't what they wanted to do, well, then it was time for us to go our separate ways.  Happily, he met someone within weeks who he married and has a family with, a good career, and despite my attempts to reconcile the reasons for my leaving, since it was a bit 'messy' back in our 20s in the 80s, he continues to not accept responsibility for his actions (or lack of actions, when it comes to showing appreciation and honor for me with what all I was doing for him and us in our daily lives. No worries -- he's a good person and no longer do I have to take care of him or anybody!)

Seems something similar was going on for Mr Ross, except that he KNEW each weekend might be his last, and he initiated a separation in the fall of 1985.  He had been realizing that the teaching hospital he had always gone to was perhaps doing more surgeries than necessary in order to teach surgery, so he was not wanting to pursue more treatment about his condition, but wanted to just learn to handle the pain and effects better.  

The wife thought he must be crazy if he was not getting treatment and was leaving her, so she arranged for his doctor to participate in a hearing to have him committed for psychiatric observation if he didn't go with her to the hospital in Minnesota.  He didn't have an attorney, so I got him in with mine, a nice guy whose wife had befriended me and my husband in my previous job -- we'd played tennis and had dinner with them but there was a big age and income disparity.  The attorney said 'you'll ALWAYS have that on your record, and clearly you're not insane, so you might best comply with her wishes and then turn down what they recommend and be done with it'.  It blew my mind that someone could pull a legal move like that! What powers wives have!

When Mr Ross got to hearing what the doctors said, with his parents there, as they had been since the beginning of his life AND beginning of his seizures and unexplained problems, through Vietnam and his being in the Air Force overseas on a base readying the planes that were bombing, when he wasn't in the hospital in the Philippines with unexplained seizures, pain, pressure of the head, etc., he gave way to their unified pressure and had another surgery to yet again replace the shunts with different ones that might be the right 'pressure'.  He returned, head and beard gone, two scars in the scalp -- back at work within a week.  He filed for divorce immediately upon his return.  

This naturally had a big impact on me, and, having a father my whole life with migraines, chronic fatigue, and undiagnosed fibromyalgia, I wasn't scared of health problems with a man.  He also was codependent on my mother and her alcoholism and I was awakening to the realities of the impact of all of 'that stuff' on me as a child and going forward into my first relationship and later marriage.  It appealed to me to be with someone who didn't drink (much) or use drugs (aside from those prescribed), and mostly, someone who was into LIVING LIFE while you had it!  

It was the best change I've ever made in my life -- I learned an incredible amount, and his adoration of me had a huge impact on me; he saw how smart I was, he encouraged me and built me up.  This was something that had, unfortunately, been missing in my "formative years" -- and in a way it just felt like my "formative years" stretched to about age 30!  We ended up marrying, and that's how I have the last name "Ross".  I actually changed my first name when, at age 32, adding a 'd' to my given name of Mary, as I was named after an aunt, and was not Christian and it just never 'fit me'.

I felt like a NEW person in a way, or a DIFFERENT version of me, so I jokingly point out my name is with a "D for different".  Not being a 'wife' was a problem with the medical situations, and his daughter had come to live with us in the midst of the mayhem from the 'manging medicine' we went through the summer of 1986, when I was 26; she was 14.  We had an AWESOME Christmas and I had never been so happy, and he was finally totally 'well'!  So we 'sealed the deal' -- we were in the process of buying a lovely home and it just seemed all 'right'.  

We'd been happy in the very beginning too -- that DE-licious time when you're getting to know a new person and falling in love. We went to a party at our boss' house and that included hot tubbing and we came back to his apartment and he had a seizure -- I'd never been around someone having a seizure; they're terrifying if you don't know it's normal for them to stop breathing for a while in order to drop some of the gasses in the blood that occur with the seizure activity.  He gave me strict orders after that to not call an ambulance unless I 'knew' he would die if I didn't.  Oh.... kay.  Oh... my... What am I getting myself into!?

And then he was back to normal and being his loving, engaging self, doing things and being SO amazing.  He'd seemed to be kind of feverish that night and thereafter he would have troubles with seizures or sweats at night.  By spring, he had a mass the size of a half dollar form where the shunt's tube ended behind the wall of the abdomen. A huge spring snow dumped on us and the change in pressure lead to his having 36 grand mal seizures by 9 am, when I quit counting.  

I then had to clear the drive (with a snowshovel, no fancy gadgets/blowers/plows) by myself from our condo we rented to the road in order to get out for work. The other three people who lived there helped.  This is after I had a few health 'concerns' but before my health totally went out the window, that came in 1989, this was early 1986. Airplanes pressurizing and depressurizing would cause a LOT of problems too -- he actually would just pass out during that and takeoff and people around him would think he just went to sleep, but it cause a LOT of pain and a whole 'bad cycle' so flying was not something he did unless absolutely necessary; we got to Denver and on a plane as fast as we could to go to his doctors in Minnesota.  

They pushed on the shunt and looked at how it ran with fluid they could see on imaging and said it was FINE and dumping down in the belly fine, so why he was feeling pressure in the brain and seizuring, they did not know.  I said "what about the mass on the stomach" and the residents just shrugged their shoulders.  I should have asked to talk with their supervising surgeons but -- I was new at this.  I was mid 20s.  I was 'just' the girlfriend and his parents were always there and they had been there through all this so I was deferring to my elders and the 'chain of command' of 'family dynamics'.  

We returned to ongoing symptoms; I knew something wasn't right but it never occurred to me he had an infection in his brain.  The next summer, one day the mass on his abdomen, which had become the size of a small pie plate, burst, and we called his doctor, as we were now on an HMO -- same doctor who was going to tell a judge of his medical condition in the past when she thought he needed to go to the out of state doctors to get an opinion about his ongoing shunt problem that resulted in the surgery -- who said 'put a bandage on it and meet me in the ER'.  We had to use the local neurosurgeons, who he'd found insufficient in the past, but there was a new graduate who we got at the ER, and Mr Ross LIKED HIM.  As did I! He took time to show me the CT scan and explain everything really well.  He tapped the shunt and had the fluid cultured, which showed that there was MRSA; they did "culture and sensitivity" and found that Vancomycin would kill it, so the plan was to do a surgery to removed the tubing from the head down, then once a week or as needed we'd come into the ER and they'd drain the fluid off through the shunt's area designed for tapping into it, and they'd shoot the antibiotic down in.  The belly would would have to heal up before they could put in a new shunt, as well as the brain would have to no longer 'grow out' any MRSA when tapped/cultured.  

However, after the first surgery to remove the infected tubing, the good new doctor was going to be off studying for his board exams and his partner would do the regular tappings, but he agreed to come in to do the final surgery; we were satisfied with that.  I'd never met the other neurosurgeons and I could see why Mr Ross didn't like him; he was very arrogant.  They both drove Porsche's, and you could see where they parked by the hospital.  During the surgery hospitalization, I noticed how much their vehicles were there -- not moving it appeared.  Sure enough, they were there a LOT, sometimes up to 72 hours on end.  So I didn't 'mind' the talk later in ER during the tapping and injecting process, of helicopter skiing or the upcoming ball and what he was going to wear, but I did feel like perhaps not as much attention was being paid to the patient and medical process.

At first they'd carefully measure how much fluid they drained off and then once it was 'figured out' about how much fluid needed to be drained each time, they went to just holding it over the trash can and letting it flow in.  I would hope that was a red-lined can, disposed of as medical hazardous material, but I don't really recall.  I just know it felt 'not right'.  So when MRSA became more and more of a problem, as I went on to become an OT and work with people coming out of surgeries, some of whom would develop MRSA in the wound, I thought back on this.  I believe I was and am a better OT for having had these experiences, and have always worked harder at education than most other therapists because of all that I've been through learning about health "care". 

Twice daily I would do wound care as they instructed, pouring -- no kidding -- hydrogen peroxide into the gaping belly wound, then packing it with an iodine infused gauze.  Today, nobody knowledgeable would recommend using hydrogen peroxide!  It took FOREVER for the wound to heal, but finally after 2 months, in mid-September, a new shunt was installed in another hospitalization.  The treatments that happened every Friday at noon in the ER would render him absolutely a pain-ridden, neurologically compromised MESS -- he couldn't walk or stand and would be on the floor or crawling into and out of bed with help for days.  Nausea and vomiting would follow the double visions, which would follow a VERY pleasant elated time where he was just kind of 'slap happy' -- the first week we observed the cycle for the first time and he told me ALL the details of his master's thesis research (which was pretty interesting, I don't know why we'd not talked about it before).  The second week, his daughter, who had come to visit, used the opportunity of his elated hour to ask if she could move and live with us, something that had been my boundary of what we were NOT going to talk about as he was literally fighting for his life, so why have her move if he wasn't going to be alive? I found out about her having asked and his having said 'yes' when she ran inside and got on the phone to call her friend, excitingly saying 'My dad said I could move here!'  I had asked her to sit with him outside before the problems set on as they had the week before, as he smoked -- I 'd not known that at first --  and loved to be outside whenever possible anyway, so I could go inside and do some typing.  We had 13 professional papers going to a specialty conference in the middle of September and they were due soon.  To say I was 'slammed' is putting it lightly.

I'd been at the office once at 3 am and had earlier thrown the staff paper in the trash, but needed a mental break so pulled it out and for some reason read the ads: "Home to be loved" caught my eye.  It was meant to be -- he liked brick ranch houses and this was a beautifully constructed custom home on a very large lot, built at the start of retirement by an executive and his wife who had become older and needing to go live with more supervision; the mailman had discovered him on the floor after a fall.  They were so happy a 'family' was going to live in the house. The daughter was an interior designer and wife of the mayor and the curtains were a stunning blue; the walls, bookcase, fireplace and even outlet covers AND OUTLETS had been painted to match! Much painting went on before we moved in; Mr Ross' parents were amazing older people, and his daughter was too -- for her age, she was a very capable and hard worker.  It all came together and the movers literally pulled away just as the parents and daughter came home from the hospital with 'the patient' after his discharge from the hospital.  The neurosurgeon hadn't been allowed by his office managers to come in and do the final surgery and in our last appointment they shook hands and he said 'sorry I almost killed you but if I didn't, you would have died.'  

I divorced again, as I'd gotten on a path of returning to college and he secretly liked me being around at work and home with him 24/7 and was doing passive aggressive things to keep the 'plan' we had for me to return to college from happening.  I've not remarried; he's twice remarried and is still alive, quite a feat considering the significance of his health problems. It turns out the first wife died of a strange infection of some sort in 2010, and he had ongoing problems with the infection for another decade -- it really had never been resolved apparently.  I waited until everything was 'stable' before hopping off, with him and his daughter, who had some serious and understandable issues being raised in this type of pressure.  Again, I think it was 'meant to be' as part of my 'life course' related to health, and I understand not only from having been a child of a parent with health problems, but a step-parent trying to mentor and parent one. 

Which led eventually to Lumigrate: I have put much information on Lumigrate about boosting up the immune system; sound advise no matter what we're doing. I've been an OT since 1996 and have seen increasing rates of infection in post-surgical wounds in patients, and they tend to cluster based on the hospital or in one case the therapy team actually helped identify what surgical suite was the culprit.   So, I've learned over time to speak up increasingly and encourage people to do so as well.  Politely.  Respectfully.  I hope my sharing this story has helped you in some way -- if you read this far, perhaps so! 

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Link to piece by Martine Ehrenclou re: preparation for hospital (for everybody and for SURE elderly).  www.lumigrate.com/forum/older-patients-are-risk-hospital-how-advocate-0 [1]

If you want to read about my only experience in adulthood of being hospitalized for what I call my "Hysterical Hysterectomy", here's the link.  www.lumigrate.com/forum/my-hysterical-hysterectomy [2]