Posts filed under ‘medical’

May 3rd – No Limits- Chapter 16- Chris Ritchey

 

Forward: https://thatwoman.wordpress.com/2020/01/02/jan-3rd-no-limits-the-forward-chris-ritchey/

Chapter One :https://thatwoman.wordpress.com/2020/02/03/feb-3rd-no-limits-chapter-1-chris-ritchey/

Chapter Two:https://thatwoman.wordpress.com/2020/03/03/march-3rd-no-limits-

Chapter Three: https://thatwoman.wordpress.com/2020/04/03/april-3rd-no-limits-chapt-3-chris-ritchey/

Chapter Four: https://thatwoman.wordpress.com/2020/05/03/no-limits-chapter-4-chris-ritchey/

Chapter Five: https://thatwoman.wordpress.com/2020/06/03/june-3rd-no-limits-chapter-5-chris-ritchey/

Chapter Six: https://thatwoman.wordpress.com/2020/07/03/july-3rd-no-limits-chapter-6-chris-ritchey/

Chapter Seven: https://thatwoman.wordpress.com/2020/08/03/august-3rd-no-limits-chapter7-chris-ritchey/

Chapter Eight: https://thatwoman.wordpress.com/2020/09/03/sept-3rd-no-limits-chapter-8-chris-ritchey/

Chapter Nine: https://thatwoman.wordpress.com/2020/10/03/oct-3rd-no-limits-chapter-9-chris-ritchey/

Chapter Ten: NO LIMITS- Nov 3rd- Chapter 10- Chris Ritchey | That Woman’s Weblog (wordpress.com)

Chapter Eleven: NO LIMITS-Dec. 3rd- Chris Ritchey- Chapter 11 | That Woman’s Weblog (wordpress.com)

Chapter Twelve: NO LIMITS-Jan 3rd- Chris Ritchey- Chapter 12 | That Woman’s Weblog (wordpress.com)

Chapter Thirteen : NO LIMITS- FEB 3rd- Chris Ritchey- Chapter 13 | That Woman’s Weblog (wordpress.com)

Chapter Fourteen: March 3rd, NO LIMITS, Chapter 14- Chris Ritchey | That Woman’s Weblog (wordpress.com)

Chapter Fifteen: April 3rd- No Limits- Chapter 15- Chris Ritchey | That Woman’s Weblog (wordpress.com)

Houston Days and Nights- continued

I haven’t the words to eloquently or adequately   explain the emotions that crash  in and out of your being as you  watch your child battle to  stay  alive. This enemy, came to  conquer , not with guns , bombs or knives it was insidious in its will to  win turning the very  body  of  its victim  against itself. Cells that were made large so  the pumps of the body (lymph nodes) plug  and distort. It circulated through  the life giving blood stream through  the lungs causing coughing that wracked the very  body  trying to deal with  the attacks.  Cancer in all its forms is and obscenity .

I tried so  hard to  keep  cheerful, what 29 year old wants to  be with  his mother. I  know he wanted Angela there knowing the trial was his last hope for a cure or at least remission. I know he wanted to  spend what time he had left with  her . I know I  was the best of a bad deal . I argued with  myself, stop  watching his every move, deliberately  giving him space, taking myself out to  the  pool side to  read, even though  I  was petrified of the little gecko  things running about the pergolas and tables, I  didn’t scream when  they  ran across my  foot or thought I was a roadway  across a chair.

Chris, would spend time going to  the rifle range or to Cabelas.  We tried to  see some of the area when we could and when he felt up to  it.  JD  and Karen, had been out of town for a bit. Chris, after one of the infusions  of SGN 35 could barely  speak the the next day  but when JD called he put strength into  his voice so  JD would not realize how poorly  he was feeling.

Tears welled up  in my  eyes and I  had to  go  out into  the lawn area and have a silent cry  by  myself. Only  I wasn’t by  myself one of the other residents I had noticed  sitting by  the pool, looking as I must look, was there.  She looked up  and me as I was not winning the battle of holding in the tears and noticed she too was crying. She reached up to  hold my  hand  and I  sat down and there we sat for a long time. Two  humans knowing nothing about each other, never speaking  sharing  the impact of cancer. I learned she too, was caring for her  grown daughter as the husband had to  stay  in Indiana for his job and children.  Her daughter was also  on a trial at MD Anderson and a last hope.

 

Hands – Touching- Hands – art work Christopher Ritchey

On the good days we toured Houston. He had wanted to  go  horse back riding. I hadn’t been on a horse in 20 years ( I was then  a lot thinner and in better shape)  and Chris  hadn’t ridden since he was a little one. I made arrangements for the following day. Of course,  that night poured with  rain and  a warm front came  dripping over Houston. I  wrote on my  blog at the time :

NOOOOOO!!! this isn’t a picture of the horse after I rode it. Whew! 90 degrees yesterday after a rain that could’ve floated a boat. My foray into the wild west “avec” plastic helmet. I realize that horse rentals have to protect their clients but you tend to lose heat through your head … just ask a politician 🙂 and when it is covered with plastic and foam OMG!!!! Anyway 2 hours later after riding through swamp and shrub and bush I now remember why cowboys are bowlegged. 

Chris, had become very  interested in life in Texas , so  different from Lorain , Ohio.  One of our days ( again in that heat) was spent at George Ranch Historical Park. It was fascinating seeing the 1830’s cabin and farm  the humble beginnings  to  the 1930’s house “George Cattle Complex” . Of course then there was that oil that helped

“The discovery of oil on the Ranch in the 1920s changed the fortunes of the family and the community forever. The George’s son and only child died while just a toddler and their beloved cousin and presumed heir Mary died tragically when she was a young woman. With no living heirs and a considerable estate, the Georges established The George Foundation to ensure that their wealth would continue to benefit communities across the county into the foreseeable future. This charitable Foundation still exists and gives back today and helps bring you the story of the remarkable family who loved, grieved, rejoiced and lived on this enduring stretch of Texas prairie.”

It was a good day  and Chris was enthusiastic. I  was once again feeling like I would die from the humidity  and heat at any moment but we laughed  and enjoyed a day  without the mention of Doctors or cancer . I would have put up with  heat, humidity  and wading across  the little river filled with  alligators just to  see him smile and laugh .

Mothers and Fathers who  are losing their child will do  the deal with  God, the stars , fate  whatever they  believe, ”

“take me instead  let my  son/ daughter have life and laughter and old age…………”

To  be continued………

 

May 3, 2021 at 1:53 pm 3 comments

March 3rd, NO LIMITS, Chapter 14- Chris Ritchey

No  Limits – The Book

Forward: https://thatwoman.wordpress.com/2020/01/02/jan-3rd-no-limits-the-forward-chris-ritchey/

Chapter One :https://thatwoman.wordpress.com/2020/02/03/feb-3rd-no-limits-chapter-1-chris-ritchey/

Chapter Two:https://thatwoman.wordpress.com/2020/03/03/march-3rd-no-limits-

Chapter Three: https://thatwoman.wordpress.com/2020/04/03/april-3rd-no-limits-chapt-3-chris-ritchey/

Chapter Four: https://thatwoman.wordpress.com/2020/05/03/no-limits-chapter-4-chris-ritchey/

Chapter Five: https://thatwoman.wordpress.com/2020/06/03/june-3rd-no-limits-chapter-5-chris-ritchey/

Chapter Six: https://thatwoman.wordpress.com/2020/07/03/july-3rd-no-limits-chapter-6-chris-ritchey/

Chapter Seven: https://thatwoman.wordpress.com/2020/08/03/august-3rd-no-limits-chapter7-chris-ritchey/

Chapter Eight: https://thatwoman.wordpress.com/2020/09/03/sept-3rd-no-limits-chapter-8-chris-ritchey/

Chapter Nine: https://thatwoman.wordpress.com/2020/10/03/oct-3rd-no-limits-chapter-9-chris-ritchey/

Chapter Ten: NO LIMITS- Nov 3rd- Chapter 10- Chris Ritchey | That Woman’s Weblog (wordpress.com)

Chapter Eleven: NO LIMITS-Dec. 3rd- Chris Ritchey- Chapter 11 | That Woman’s Weblog (wordpress.com)

Chapter Twelve: NO LIMITS-Jan 3rd- Chris Ritchey- Chapter 12 | That Woman’s Weblog (wordpress.com)

Chapter Thirteen : NO LIMITS- FEB 3rd- Chris Ritchey- Chapter 13 | That Woman’s Weblog (wordpress.com)

Houston Days and Nights / CONTINUED

The flight  from Cleveland to  Houston Airport was filled with  angst and anticipation  at the same time.  I  certainly  didn’t know what to  expect , either with  the living accommodations or what was going  happen with  the “infusions of SGN35. Since it was a “trial drug”  the  side effects and how Chris would react with  just me supporting him in Houston. I am not in the medical field, obviously,  and  my  trusted support team were 1,400 miles away.

Houston. I left Cleveland on a sunny  crisp September morning and landed into  heat, humidity  and strangeness.

I don’t handle heat well and humidity that is torture for me . I sucked up  my  discomfort  and headed toward the baggage claim. Chris had had his first infusion the previous afternoon and since I  was worried about  any  side effects. I  told him I  would grab a taxi from the airport, he shouldn’t worry  about picking me up.  JD and Karen, the Houston couple, who took Chris and Angela  under their  wing the previous weekend  had lent Chris the  ranch  truck to  use for a few days.

I hadn’t realized how far the airport was to  Houston proper. The taxi fair was 59 dollars plus tip.  I thought thank heavens  I  had put a hundred dollars in Chris shirt pocket as  he and Angela left Cleveland. The younger generation is all about “the plastic” and I tried to  drum into  them

always have at least a hundred in cash  for emergencies. You  never know when cash is the only  option  

I am sure I  could have  hired a taxi  on my  plastic but the first one in the rank only  took cash. I had no  clue where this chap was taking me and we seemed to  be driving for ever. I was so  apprehensive about the apartment complex because when the Lombardis ( Tim and Sue)  had shown up the night before with  the suitcase  Sue, kept on about  how Angela was very  concerned about the accommodations, the neighborhood.

What had I  done ? I had tried my  best in a limited housing situation  in a limited time frame . I thought well I  am here now and can  change the location  and find something else.

I was relieved when we finally  arrived at the apartment complex, it certainly  was not  this terrible place I had now pictured in my head after Sue Lombardi’s visit.  I called Chris who came to  the entrance  to  meet me .

Chris was very  white and had dark circles and not looking at all well. I said look you  go  back  to  bed  and I  will unpack.

The apartment consisted on a galley  type kitchen, complete with  dishes and all items needed  except food.  open to  a small dining area and living room with  desk  . The sofa was a pull out Queen , large tv and looked out onto  the pool area.  Off the living room was a bedroom and ensuite. The bed was a king sized and  the  bedroom with  2nd TV also   looked out onto  the pool area. The bathroom was very  large and also  contained  stackable washer and dryer and large walk in closet. All linens and towels etc were supplied

As I  walked around to  get my  bearings I wondered  whatever Angela was talking about?  There were many amenities, media room, computer room, gym and workout room, coffee bar , barbeque areas, designated parking  with  secure entrances,   all available to  us as no  extra charge. There was even a dog park and I thought maybe if Chris has to  spend weeks down here Misty  might be an option for a visit.

I checked the refrigerator , as I  desperately  needed some sustenance. Apart from a bottle of water and left over spaghetti  there was nothing, the cupboards held microwavable mac and cheese, just add water. Not at all appetizing in my  opinion.  So much  for Angela’s  thoughts on the matter

photo Angela by Chris Ritchey

Angela said:“He will be fine…. there is a kitchen and he can order in pizza and JD and Karen had lent him a truck……he has to  take ownership  of his illness”

First things first when Chris woke up  I said “time to  get some  food and items , washing up soap , and detergent, garbage bags etc. Are you  up to  driving me to  the store?

 

There was a large grocery  store  about a mile and a half away  and I loaded up. The only issue was the distance from the covered parking garage to  the apartment with  groceries. We had bags  and bags and I watched as my  beautiful strong son , now a shadow of what he once was ,  wearying  under the weight of carrying and fetching the shopping . I  wanted to  scream and cry  at what this bloody  disease was doing to  him. But we managed, he went back to  bed and I  unpacked and made him  dinner. His favourite,  stewed  beef, mashed potatoes and carrots.

 

 

I had learned over the months of cooking  for him with  this disease and treatments to “hide” calories. The mashed potatoes which are easier to  eat when your mouth  is sore,  whipped with extra butter and an  egg hidden and cream instead of milk. The beef slow cooked so  it is really  tender  and the gravy  laden with  richness and calories. Always a vegetable or two not cooked to death  but more than “al dente” . Of course ice cream and calorie laden desserts such  as orange whip. This could be made with  any canned or fresh  fruit, in this case mandarin oranges, orange Jell-O  and heavy  whipping cream.

Chris spent the rest of the evening watching TV in the bedroom and  sleeping on and off.

Sunday  , Chris looked much  better in his color  and less tired.  I don’t believe he had eaten anything but a half a plate of spaghetti and drank water for at least three  days.

Chris came out of the bedroom  said JD and Karen had called and would I like to go with  him and join them for dinner. Chris had had the use of the truck for over a week and I was going to  rent a car , so I could drive if need be, and we then could return JD’s truck to  him after dinner. We went to  Enterprise, which  was around the corner, and rented a car.

Chris had already formed a sort of bond with  JD , who  was older  of course, and I was looking forward to  meeting the people who  were being so  lovely  to  my  son and Angela.

I saw immediately  why  Chris had taken an instant liking to  JD apart form the fact he was younger and taller  , his hair, he general appearance was so  reminiscent of my  father and Chris grandfather who  had died when Chris was 8. Chris had spent a few weeks with his grandfather  that year when my  dad came to  visit us.

JD was humorous, kind and interested. Karen his wife was tall and elegant and as my  dad would say  “had legs that went on forever”.  Karen  too was very  kind and knew what I  was going through as her son had been diagnosed with  cancer when he was very young. Luckily  , her son, was cured but she knew  the heartbreak and the terror that I  was feeling.  I was so  relieved  to  have these lovely  people in our lives at that time. JD assured me  the apartment was one of the better ones and we could call for anything anytime.

That night as I  got into  the “sofa bed” trying to  see the stars, my  husband said were so  prevalent in Texas, I realized that Sunday night was the first time in many  months I  did not go  to  bed with  a raging  headache. Being able to  take care of my  son, and being met with  kindness and support had done that.

To  be continued………..

March 3, 2021 at 12:41 pm 4 comments

Oct. 3rd No Limits Chapter 9 – Chris Ritchey

 

No Limits- The book

Forward: https://thatwoman.wordpress.com/2020/01/02/jan-3rd-no-limits-the-forward-chris-ritchey/

Chapter One :https://thatwoman.wordpress.com/2020/02/03/feb-3rd-no-limits-chapter-1-chris-ritchey/

Chapter Two:https://thatwoman.wordpress.com/2020/03/03/march-3rd-no-limits-

Chapter Three: https://thatwoman.wordpress.com/2020/04/03/april-3rd-no-limits-chapt-3-chris-ritchey/

Chapter Four: https://thatwoman.wordpress.com/2020/05/03/no-limits-chapter-4-chris-ritchey/

Chapter Five: https://thatwoman.wordpress.com/2020/06/03/june-3rd-no-limits-chapter-5-chris-ritchey/

Chapter Six: https://thatwoman.wordpress.com/2020/07/03/july-3rd-no-limits-chapter-6-chris-ritchey/

Chapter Seven: https://thatwoman.wordpress.com/2020/08/03/august-3rd-no-limits-chapter7-chris-ritchey/

Chapter Eight: https://thatwoman.wordpress.com/2020/09/03/sept-3rd-no-limits-chapter-8-chris-ritchey/

Double Cell Transplant:

We went to  see  Dr. Brad Pohlman  who  had been involved through  South Pointe with Chris’ initial treatment.

:Brad Pohlman, MD, is Vice Chair of Operations at Cleveland Clinic Taussig Cancer Institute. DrPohlman is a member of the American Society of Hematology, American Society of Clinical Oncology, and American Society for Blood and Marrow Transplantation.https://www.youtube.com/watch?v=sngT_dShxsw

 

So  much  for the 95% cure rate  re Hodgkin’s Lymphoma, Chris was  now diagnosed with   Refractory  Hodgkin’s Lymphoma , the cancer came back very  quickly https://www.webmd.com/cancer/lymphoma/qa/what-is-refractory-or-recurrent-hodgkins-lymphoma

The day, Chris and Angela and I  went to   we went to the Cleveland Clinic and saw the Lymphoma specialist Dr. Brad Pohlman, once again we rode the rails of hope. My son wanted to  do  whatever it took to

get this “crap” out of me, cut it, burn it, kill it, I want to  reach  the age of 50″.

I looked at his face as he said those words and my heart ached for him.

It was suggested that Chris undergo  a Double Stem Cell transplant ,  good results had been seen in a study  out of California . A tandem (double autologous) transplant is a process in which you have two stem cell transplants with your own cells — done about three to six months apart — to increase chances of success.

Basically  this involved removing stem cells  from Chris  through  his blood. The need a certain amount and they  did manage to  get all they  needed in one  removal

https://www.nhs.uk/conditions/stem-cell-transplant/what-happens/

The most common way to harvest stem cells involves temporarily removing blood from the body, separating out the stem cells, and then returning the blood to the body.

To boost the number of stem cells in the blood, medication that stimulates their production will be given for about 4 days beforehand. On the fifth day, a blood test will be carried out to check there are enough circulating stem cells.

If there are enough cells, veins in each arm will be connected by tubes to a cell-separator machine. Blood is removed from one arm and passed through a filter, before being returned to the body through the other arm.

This procedure isn’t painful and is done while you’re awake. It takes around 3 hours and may need to be repeated the next day if not enough cells are removed the first time.”

He then, after harvesting, went through more Chemo therapy  and  in one year from his first chemo  was back in the Cleveland Clinic isolation  etc. to be chemically  killed . There is no  other word for it. We prepared as best we could because of the high risk of infection he was initially  behind a glass window. The side effects of the first transplant  were given to  us :

  • Nausea and vomiting
  • Diarrhea
  • Hair loss
  • Mouth sores or ulcers
  • Infection
  • Bleeding
  • Infertility or sterility
  • Anemia
  • Fatigue
  • Cataracts
  • Organ complications, such as heart, liver or lung failure

As he went through the  first of the stem cell transplants I would go to the hospital every day, he hated the food, refused to eat it. Apparently  the smell of the plastic covers covering the food  and the steam coming off of them  nauseated him. I would cook him lunch and supper, trying to devise a menu which would appeal to the lack of appetite, high calorie content that slipped down easily, dishes he liked from childhood. Then I  would take the dishes to  him. The nutritionist had to  OK what I  cooked, but they  were more nutritious than what they  were trying to  give him so  I was allowed.

Finally  the glass screen came down, he was supposed to  be the hospital that first time around for at least 4 weeks. He experienced most of the side effects.  I still suffer from that place and  that transplant. The nurse warned me they  would be putting his own irradiated and treated cells back into  his body  and the preservative  used would smell like creamed corn and it did. The smell permeated the very  air  for hours. I can no longer smell  creamed corn cooking  or dished out  without being violently  ill both  in mind and body.

I would arrived at 11:30 am, most of the time he would be in the chair by the time I arrived, hooked up to poisons and fluids. I would get clean sheets from the nurse every day and make up his bed.  This was my only way of trying to make him comfortable, with clean sheets and freshly made bed. I would stay whilst he slept, or watched TV. Most of the time I read. I can’t remember one book or title of any book during that time.

I would stay with him in that “cell” because that is what it became for both of us a cancerous prison but with hope the door would be unlocked to a future.  I would heat his supper in the hospital’s “family room” microwave – clean up and come home at 7 to get dishes etc. for the next day and start all over again.

My daughter was at the end of her pregnancy, when Chris was admitted for the first stem cell procedure.  She wasn’t due until at least two  weeks after Chris was due to  be released from the first stem cell transplant ( Autologous) , but once again, somehow I  KNEW  (yet another premonition) , I was going to  be torn would   between hospitals –  I would be travelling between hospitals and the needs of my  two  children.   I was right, Chris was at the end of the first procedure when Nikki went into labor two  weeks early .

I had just crawled, exhausted,  into  bed when my  son in law called to  say  Nikki’s water had broken and to  meet them at the hospital as Nikki  wanted me  with  her when she gave birth.  Even though Chris had been in one hospital being chemically killed he was on the phone to Nikki the whole time talking her through the pain of birth, making her laugh, easing her mind. They were miles apart and yet Chris was there for her as I knew he would be. Chris talked to  her through  the hours of labor, making her laugh, getting her through. They  were always there for each  other

Chris and his sister, Nikki – on the happiest night of her life

Chris said:

hey  at least you  will get out of there in a couple of days  even when I  get out I  will have to  come back….. hang in there … you  can do  this….

 

 

He said to  Nikki  after he heard  it was a baby  boy. let me tell Nana and Dad and he did .  I didn’t see him for 4 days after the birth  as I  was with  Nikki, but his counts came back quickly , quicker than expected and he was released/

Chris came home on April 3rd and met his nephew for the first time, he was amazed at how tiny  Gavin was. Nikki’s house was the first place he came straight from the hospital . Nikki, with  Gavin in her arms   and Chris and held onto  each  other that afternoon ….

To be continued

October 3, 2020 at 12:00 pm 1 comment

Medical Care – a consumer’s perspective-Cleveland Clinic Rehab Hospital

Part Onehttps://thatwoman.wordpress.com/2019/03/22/the-ratings-of-medical-facilities-series-it-begins/

Part Two- https://thatwoman.wordpress.com/2019/04/09/medical-care-from-a-consumers-perspective-ohio/

Part Three- https://thatwoman.wordpress.com/2019/04/22/medical-care-a-consumers-prospective-mercy-health-lorain/

Part Fourhttps://thatwoman.wordpress.com/2019/04/29/medical-care-a-consumers-perspective-mercy-health-lorain-2/

 

Cleveland Clinic Rehabilitation Hospital Avon Ohio, was NOT on the list of 34 facilities given to  us by  Mercy Health social workers – Lorain Ohio.  I  did some research  on my  own, went to  the internet and to  my  facebook page and asked local friends if they  had had good or even poor experiences with  facilities in the area. Cleveland Clinic Rehabilitation Hospital came up as being a good facility.  https://my.clevelandclinic.org/locations/rehabilitation-hospital/specialties

My  daughter and I  spent a Thursday  morning touring the facility. It has all the benefits of a hospital doctors  , rehabilitation therapists,  nurses,  aides and the focus is of course on rehabilitation. The facility  is only  a few years old and shiny  , white and extremely  clean. The rooms were large , bright and airy. We were most impressed with  the rehabilitation area and the state of the art equipment .

However, my  husband ( due to  Medicare Insurance  rules) apparently  could only stay  for 19  days.  It is my  belief  he probably  should have been released to  that facility  further along in his recovery. He was paralyzed down one side  and was on a plethora of medications. One which  was given to  him at Mercy  by the “ghost dr.” which  causes confusion etc. Again not being a physician and not knowing at the time he was even on this medication I was also  unaware  that in order to  combat the confusion ( also  he was on pain killers) he was being given another drug for Alzheimers.

I must interject here as to  hospital to  hospital transportation, I  wish  I  had something good to  say , you  really  are at the transporters “mercy”. The time arranged   leaving Mercy to  the Clinic was supposed to  be 11 a.m However, although  I  was supposed to  follow him to  the new facility  I  couldn’t by  6 in the evening after waiting hours and hours I went home and told them to  call me when he was being transported . You  see I  had to  sign the admittance papers and permission to  treat. At 9:00 p.m. I  called the Clinic who  told me that it was so  late he would probably  now be transported the following morning . I went to  bed only  to  be called at 11:15 by  the Cleveland Clinic Nurse that he had been sent to  them a few minutes prior  and could I  give the permissions verbally. ( This was not the only hiccup with transport).

I was, on the whole, extremely  pleased with  this facility  but it was not all good news. Once again the rehab staff were wonderful, and it was so  organized, you  knew exactly what he would be doing and when, I  was very  impressed with  the rehab staff, also  the cleaning staff once again were in the rooms every  day  and sometimes more than once. The nurses were for the most part very  professional and helpful as were 80 percent of the aides.

My  husband needed help  initially from two  and on some occasions three individuals to  see to  his needs. The confusion caused by  the drugs  did not help, that and the weakness and immobility of his left side. He had to  learn to  use his vocal cords  again ( which were stretched due to  the intubation) . It was a few days before I  realized he was still taking the medication for gout  which  should have been stopped at Mercy.  The medication Colchicine, can  and does cause diarrhea  and stomach  upset. The gout symptoms had abated and he really  should not have been still on this drug , especially  since it does also react with  Digoxin  but of course I  was unaware he was on this drug as well.

I  did insist since the diarrhea was an issue  they  stop the Colchicine. I also , once I  found out he was on Digoxin  ( Lanoxin),  they  stop or change that medication    BUT and here is the issue  it seems that doctors at this facility  and other facilities in the chain are loathe to  change another “specialists” diagnosis and treatment.  This was a huge problem  for us. One because we were out of our network and OUR team of physicians and specialists who  knew his history  and his courses of treatment we had to  rely  on basically  strangers to  his situation.

Therefore I  started asking for a daily  list of all his medications

Once he was off the Colchicine he stomach  upset went away. BUT not for long  a woman in the next room came down with  C’diff https://www.cdc.gov/cdiff/what-is.html . Now it was put to  us that my  husband came down with  this due to  the huge amount of antibiotics he was taking and had taken. BUT that is not the whole story:

IF the lady  in the next room and not had the infection first I would not have done more research thinking  it was because of the antibiotics . Although  the staff were for the most part adhering to   handwashing etc protocol not all of them did . Infact  I  would say  20  percent of the aides were lax in that area. I  actually  had to  throw away  his cellphone as it somehow became covered in fecal matter ( C’diff contamination) and was put on the bedside table. My  husband was incapable of having reached the table.  I  will say  that for the most part the aides and nurses did respond to  his call light in a timely  manner.

One aide,  in particular, left a lot to  be desired, from his treatment of my  husband  and his response times were not great, his laxness in this area and lack  of hand washing protocol  was a great concern.

 

Please understand a patient is in pain  and although  they  had been told of the back injury   it took at least a week for them to  address the situation ( it hadn’t been addressed at Mercy so  not on his record) , which  meant sitting in one position or laying ( when you  are partially  paralyzed) can be unbearable and since you  can’t move  the aides had to  do  it for him. This did cause “some ” of the aides  frustration and it showed.

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There was  another aide  who also  needed to  be retrained or let go  in my  opinion.  I came into  find my  husband half in  and half out of the bed, the top  sheet wrapped around him and soaked with  water. Actually  I  had just walked into  the room with  one of the hospital administrators, so  she did witness the situation. She immediately  went to  work taking care of my husbands comfort. The aide , when she was called , said he spilled water on himself… remembering the jug was on a table  out of his reach and he was not able to  move his left arm at all, that scenario was very  unlikely. I looked at this aide and said:

“so  he spills a jug of water all over his bedding and you  leave him laying in it?”  

The aid turned to  me and said:

“SORREEEEEEE”( in a very  sarcastic tone)

I then turned to  the administrator ( names available) and said

“she is done I  don’t want her anywhere near my  husband

The administrators at the Cleveland Clinic Rehabilitation hospital did address my  concerns but as I  told them what stopped them from getting  great review  on the place as a whole in my  opinion  was 20 percent of their “aides”  and it was those 20  percent that  caused situations that should not have happened, but it is those situations you  remember .

HEALTHCARE IS A HUGE BUSINESS AND EVEN THOUGH  WE THE CONSUMERS ARE PRETTY  MUCH  AT THEIR MERCY (NO  PUN INTENDED) WE ARE STILL CONSUMERS PAYING FOR A SERVICE.

We were assigned one doctor for my  husband and he called in others as needed  such  as another cardiologist, ultra sound  etc.  The doctor was quite nice, spoke very  softly but with  a heavy  accent so  I  was once again forever asking him to  repeat what he was saying and every time he was in the room he was costing ( according to  the bills I  received) 350 to  500 dollars for up to  35 minutes. I should go  through  the dates to  see how many  times a day  but considering I received 74 pages of bills each  page having at least 5 charges on them I am honestly  too tired to  do  the homework.

The discharge date  ( the 19 days being almost up) I was given another list of this time 54 “skilled nursing facilities ” for the next part of the journey  and this time I  did have time to do  some homework……….. To  Be continued

 

Cleveland Clinic Rehabilitation Hospital gets a B plus…. it was an A minus  But then that C’diff situation  was made worse…… more on that as we continue….

 

 

 

May 27, 2019 at 10:02 pm 1 comment

Medical Care, a consumer’s perspective- Mercy Health – Lorain ( 2)

Part Onehttps://thatwoman.wordpress.com/2019/03/22/the-ratings-of-medical-facilities-series-it-begins/

Part Two- https://thatwoman.wordpress.com/2019/04/09/medical-care-from-a-consumers-perspective-ohio/

Part Three- https://thatwoman.wordpress.com/2019/04/22/medical-care-a-consumers-prospective-mercy-health-lorain/

Mercy Health — Lorain Hospital https://www.mercy.com/locations/hospitals/lorain

After hours of torment and worry , my  husband was in ICU- Mercy  Health , Lorain. The brain surgery  went well, now a matter of time.  I  have been in ICU’s more times than I  care to  remember , each  hospital a little different.

I have to  state here and now the  ICU nurses and team at Mercy were wonderful to  us. I cannot say  enough  about them , they  were so  caring and compassionate. The housekeeping staff who  cleaned  and cleaned would see me sitting in the small waiting room whilst tests and all things happening to  make my  husband comfortable were happening. I would see a hand reach  out and put down a cup  of coffee or fruit drink and a smile.

Yes, they  made things so  much  easier.

I really  had to  force myself to  think and stay  upright and ask questions of the myriad of people who would come in an out including physicians, physicians assistants, residents.

 

Indeed  on a few occasions I had no  clue as to  who  they  were , some not all introduced  themselves, very  businesslike  and with  a clipped manner  when answering my  questions or observations. In the end, I  learned to   ask  those questions of the nurses and they  would check  for me. When  dealing with  “one or two  of the physicians”  the answers were ensconced in medical terms  and a couple of times I  had to  have them repeat their answers  due to  heavily accented language I  found difficult to  grasp. That was something I also  had to  deal with  later on as well.

I wrote to  the CEO of Mercy ( Edwin Oley) after we transferred to  the Cleveland Clinic Rehab Hospital . I have copied parts of the letter and my concerns . I  have left out the physicians names  for this blog but they  were named in my  letter. Needless to  say  I  have not received any  response from Mercy  Health  Lorain ( not that I  expected  any    but “received and filed ” might have been polite at least :

Excerpts and notes  from the letter- February  12th 2019

For the attention of Edwin Oley, Mark Rau and Cheryl Rieves

Dear Mr. Oley,

I am writing today not only to thank the nursing staff for their excellent care, and also “housekeeping ladies” in the ICU who were so kind and helpful during our time of crisis and all but one of the physicians.

January 18th my husband had a fall – although his Doctors are at St. John’s West Shore we were taken to your ER. I have no complaints with the treatment there . He was admitted with a small brain bleed , which they felt would be absorbed and that is what looked like was happening. He was in ICU for a couple of days , then in general population and then sent to your REHAB unit. Again, I find no fault with the care, the nursing and rehab staff or physicians .

January 24th my husband suffered another major brain bleed in your Rehab unit ( on the right side of his brain) It was totally due to your response team , staff and Dr. XXXXX that my husband didn’t die, he literally was minutes away from that happening .

We were so grateful this happened IN the hospital had he been elsewhere he would have died. After major surgery he was sent back to CC11 in ICU – he was intubated and the care was wonderful . It was there I encountered Dr. PXXXX who did not impress me, I didn’t even know who he was and he certainly did not interact with me at all.

 

Wednesday January 30th my husband was finally able to come off the “tube” I must state here , my daughter and I had been putting in 15 hours shifts, trading off so one of us would be there , a terrible and emotionally draining time .

 

Six days after the surgery and two hours off the breathing apparatus I went home for a rest . I was woken by a Social Worker phoning me to explain “I would have to make a decision as to my plans for my husband “ I told her I have no plans he hasn’t even woken up – any plan I would have would be to get him sitting in a chair. She stated I would have to let them know and would leave a list of facilities in his room . which she did!

NOTE THIS IS THE LIST OF FACILITIES GIVEN TO  US BY  MERCY HEALTH  SOCIAL WORKERS!

 

 I want you  to  put yourself in our position, we had had a terribly  traumatic time very  little sleep for days  and we were given a list of 34 places  one of which   my  husband needed to  be transferred to  in coming days. We didn’t know “what his prognosis would be, if he had major brain damage and here is the list  “check them out…….( this certainly  was not helpful)

Saturday February 2nd My husband was moved to Tower two North– Once again hours after being in the new room I was sent another Social Worker – I had to make plans – he was still out of it and on a feeding tube and unable to swallow on his own . I reiterated I had no plans I couldn’t make an educated decision until I talked to my medical professionals who knew his history and were not in your network. I asked if this is rehab why couldn’t he stay at Mercy in the Rehab unit where he was initially – I was told flat out he would no longer meet the criteria of 3 hours daily . Dr. AXXXXXXXXXXX of Rehab would not accept him. I said well I am not making a decision until I know more.

Every day I was prompted by   staff as to my decision.

Tuesday February 5th – during rounds – Dr. PXXXX and a host of people came into the room . I had only had cursory glances with this Doctor – I didn’t even know why he was there, every other physician explained who they were and what their specialty was , including therapy professionals. The communication in that area was excellent.

 

During this particular round Dr. PXXXX informed me they would have to put a feeding tube in his stomach, and I would have to make plans as to where I was sending him. The Social Worker also reiterated when I asked:

 Why can’t he stay at Mercy Rehab after all I felt comfortable and they saved his life.

ONCE again I was told Dr. AXXXXXXXXXX wouldn’t accept him .

 

Dr. PXXXX said:

you have to decide and he needed “skilled nursing”

I said

No I need to talk to his Drs.- PXXXX informed me “transfer him to St. Johns , I said the insurance wouldn’t cover that as it would be a lateral move, I would  check out some of the facilities on this list and since I had been in the hospital for days on end I hadn’t had time . He informed me that once the feeding tube was in he would be ready to leave.

I suggested, it seemed to me they were doing that to   get rid of him.

Dr. PXXXX left the room whilst my daughter was asking a question re the stomach tube….. only to return and said AXXXXXX  MXXXXX ( name of local facility) !!!! I understand he some interest in that facility.

Actually the next morning ,my husband who finally woke up to some degree, pulled out the feeding tube from his nose, they couldn’t put in the stomach tube due to food in the esophagus and it was delayed until Wednesday at which stage he had been now moved to Cardiology .

He has AFIB and because they couldn’t feed him his heart medication in liquid form they moved him so they could give it in his IV. Whilst in Cardiology they once again tested his swallowing capabilities and he passed- no stomach feeding tube)

 

Again another Social Worker came in what were my plans ????I spent the next hours researching and pop in visiting these facilities –

I was told Mercy Allen had no beds available and I couldn’t give them a date anyway .

 

At this point in the epistle I would like to add that my husband has for the past 16 years has NOT been able to take Statin Drugs of any kind. In fact in ER we specifically stated and it was put on his wrist ALLERGY STATINS  HOWEVER, some Physician , whom I never heard of or spoke to PRESCRIBED LIPITOR- A STATIN which actually started to cause my husband issues.

My daughter stopped the nurse from giving the 2nd dose. After checking I found written in the note “QUESTIONABLE ALLERGY”) NOT ONCE DID ANYONE ( INCLUDING THE PHYSICAN ) ‘QUESTION THE FAMILY AS TO WHY THIS DRUG WAS NOT ALLOWED!

 Cardiology sent my husband back to 2 north

( NOTE: it was only  later at the Cleveland Clinic  I  found out my  husband had been prescribed  Lanoxin by  the same “unknown physician”. Had I  known  I  would have mentioned that  it was found in a previous “heart issue” Lanoxin did cause serious side effects with  him.. such  as paranoia , confusion ( remember that  for chapters two  and three of the journey. Again this is partly  due to  my  not remembering all the drugs he has had issues with  and the fact they  did not have access to  his full medical history

As I researched, Wednesday and talked to many people I decided on the Cleveland Clinic Rehabilitation Hospital – Avon. Their representative came an evaluated my husband late Wednesday evening . My daughter and I toured the facility on Thursday morning the 7th . We were very pleased with what we found . THIS FACILITY WAS NOT ON THE LIST GIVEN TO ME!  ( Note you  can see I  penciled it in on the list from Mercy  Health)

 

THEN IT STARTED – For days and days I was told Mercy would not accept him back into their rehab unit WHERE we had asked to go time and time again. BUT LO AND BEHOLD HAVING BEEN TOLD FOR OVER A WEEK NO!!!!! ALL OF A SUDDEN – OH WE WANT HIM HERE- HE CAN STAY PLEASE ! I had all sorts of staff and Directors etc – stating he COULD GO BACK to Rehab. I spoke to Rehab representatives who had found out that morning he wasn’t coming back –

Dr. PXXXX actually told the staff  I was sending my husband to a skilled nursing facility – which was NOT TRUTHFUL I hadn’t made up my mind at that point and was waiting to hear back from the Clinic. HE HAD NO BUSINESS SPEAKING FOR ME!!!! AND Dr. AXXXXXXXXX had not made any such determination as to my husband’s status as I was told by Rehab. Staff on Thursday morning .

 

The decision to leave was very hard we had received excellent care but what with the No Room at the Inn fiasco  and the pushing to leave and make other plans during a time of great distress for me and my family and the “statin” situation we have moved my husband. He is very weak but starting to respond.

 

My feeling is your facility fell down in not communicating to the family properly – social workers should give “all pertinent information”- in laypersons language and a full explanation as to why ( days of paper work etc) to families who are under stress as it is.

 

At least two of your physicians caused more harm, emotionally to the family and in one case could have caused other issues. Due to the protein treatments given in ER , to combat the Xarelto I informed them that within days he would get a major gout flare up ( Gout initially   due to statins after his open heart surgery in 2002. Which is WHY NO Statins) . He did get a Gout attack on the Wednesday Jan 23rd in Rehab, they drained the knee and gave him a cortisone shot but the damage was done.

Photo  source : https://www.researchgate.net/figure/Healthcare-professional-views-of-hospital-to-home-care-transitions_fig1_230565561

Why the 2nd massive brain bleed the next morning – well we aren’t sure, but REHAB staff saved his life and the fact he isn’t there today at your facility is entirely at the hands of administrative decisions poor communication between social workers and overriding a medical allergy without discussing why it was necessary with the family. Questions feel free to contact me……

I  don’t think  I  need to  go  into  further detail this letter pretty  much  said it all. And the cost so  far  for Mercy Health  –  is approximately  $70,000.00 and climbing .

 

Next Up  Cleveland Clinic Rehabilitation Hospital

 

 

April 29, 2019 at 9:59 pm 9 comments

Medical Care -a consumers prospective-Mercy Health Lorain

 

Part Onehttps://thatwoman.wordpress.com/2019/03/22/the-ratings-of-medical-facilities-series-it-begins/

Part Two- https://thatwoman.wordpress.com/2019/04/09/medical-care-from-a-consumers-perspective-ohio/

Mercy Health — Lorain Hospital https://www.mercy.com/locations/hospitals/lorain

Our particular health  care journey started with  a fall January  18th/19th 2019 and a call to  911  and a rescue squad. Since the patient, my  husband, had fallen and was unconscious for a few minutes it was decided to  take him the the emergency  room. In this case  although  our physicians and hospital of choice is St. John’s Westshore, the drivers  would only  take him to  the nearest ER.

29000 Center Ridge Road
Westlake, OH 44145
https://www.uhhospitals.org/locations/uh-st-john-medical-center
 The rescue squad insisted he be taken to  Mercy Health Lorain.
https://www.cincinnati.com/story/news/2018/02/22/mercy-health-merge-bon-secours-health-system/362456002/

In July 2016 – another fall had required a trip  to  the Mercy  Health Lorain ER. I was not impressed at all with  that particular visit, the ER at that time left a lot to  be desired, imho  and after three hours of not seeing anyone higher that a Nurse Practitioner  I  insisted my  husband be transferred to  St. John’s West Shore.

The diagnosis was very  serious  Rhabdomyolysis 

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4365849/.

Many  days were spent in the hospital recovering from this health  issue and all the problems it entailed.

Needless to  say  a trip  to  the Mercy  Health ER in Lorain was not something I  relished, but I  knew I  could insist on him being transferred if worse came to  worse.  I  have to  say  I  was pleasantly  surprised in the difference from 2016.  We were seen quickly  by  a team of nurses and a physician ( not one lone nurse practitioner) and when the diagnosis of a small brain bleed an intracranial bleed   was determined.

A brain hemorrhage refers to bleeding in the brain. This medical condition is also known as a brain bleed or an intracranial hemorrhage.

I was relieved to  have a  Neurosurgeon who  was already  in the ER  come in an explain the situation. The fall had caused this small brain bleed but it was exasperated by  the fact that since 2016 my  husband was on the blood thinner  Xarelto

https://www.mayoclinic.org/drugs-supplements/rivaroxaban-oral-route/side-effects/drg-20075013

The ER “team” had to  use other meds in order to  lessen  and counteract the effects of the Xarelto. I had to  sign papers to  that effect. As I signed the required documents I read of the “proteins” that would be used.  This brought up  another problem … because all my  husband records were with  St. John’s and his UH physicians  the records at Mercy  were very  sketchy  and out of date.  Proteins being pumped in to  my  husband will cause ( within 4 days) an attack of gout.  Of course his doctors at UH  were aware of that  but I had to  inform the ER physician of this, I  think  he thought I  was  not at all to  be taken seriously  and the almost “pat on the head – there/ there” look crossed his face. Gout indeed?????

So  there you  are in the ER at 1 in the morning trying to  rack  your brain , as you  are worried and anxious as to  what this particular “team needed to  know” allergies, past medical history , medications he was on, when he last took anything, insurances  because Mercy  did not have access to  his patient information – they  are under a different system.

 

I  am sure they  thought I  was over stating the problems, gout and bad reactions to  statins, so  NO  STATINS- remember that because it does come back  to  haunt, both  the gout and the Statins.

This is something in my  opinion that needs to  be addressed. We  as a family  decided to  have him admitted to  Mercy  for observation, the bleed location was not operable and they  hoped it would be absorbed. The decision to  stay was based on two  reasons:

1. The Neurosurgeon  I  immediately  liked and felt comfortable with  and 2. that particular weekend there was a major  winter storm hitting the area and roads were closing.

Hindsight has confirmed that our decision to  stay  was indeed the right one.

A hell of a storm broke that morning and roads were closed. I  could not get out of my house for two  days. My  daughter and husband with  their large vehicle did manage.  Cat scans were done and all was progressing nicely . However, 4 1/2 days after he was admitted the “proteins” did do  their damndest   and a major gout attack  took place, blood pressure and pain were an issue. A doctor was called in to  give  a shot and to  drain the knee on that Wednesday  evening.

 

Early  Thursday  morning I received a call from the nurse at Mercy …

 

“my  family  had to  get to  the hospital right away – there had been a complication- my  husband had collapsed with  a massive brain bleed- we needed to  get there quickly”

By  the time we arrived at Mercy Health he was already  intubated and prepped for major brain surgery. He had had a massive subdural hematoma:

 

“People with a bleeding disorder and people who take blood thinners are more likely to develop a subdural hematoma. A relatively minor head injury can cause subdural hematoma in people with a bleeding tendency.”

  https://www.webmd.com/brain/subdural-hematoma-symptoms-causes-treatments#1

As luck  would have it the Neurosurgeon  that had inspired confidence in that ER was ready  to  operate . My  husband was rushed into  the operating room , we were told to call relatives etc. I  have to  say  the “rapid response team” of nurses and professionals were wonderful , they  did along with my  favorite neurosurgeon ( by  now)  saved his life that morning . 

Hours in the waiting room, moved to  ICU and prognosis iffy– the next 72 hours  would tell the tale …..

To be continued …………….

 

 

April 22, 2019 at 11:26 pm 3 comments

Medical Care – From a Consumer’s Perspective- Ohio

 

Photo Source :  https://revenuesandprofits.com/top-20-u-s-healthcare-companies-by-2016-revenues/

 

Part Onehttps://thatwoman.wordpress.com/2019/03/22/the-ratings-of-medical-facilities-series-it-begins/

 

The amount of money  spent “annually” in the United States on health  care  is, according to  Forbes Magazine

Americans spent $3.5 trillion on healthcare in 2017, adding up to 17.9% of GDP, nearly the same as 2016’s 18% share. Healthcare spending grew by 3.9%, the slowest it’s grown since 2013 and slower than the previous year’s 4.8%.

The main reason overall healthcare spending grew more slowly was because of less growth in the amount of healthcare services people used and in the use of fancier services like MRI instead of CT scans. This is one category called “use and intensity” and is what’s left over after the report authors at the Centers for Medicare and Medicaid Services subtract out spending growth that is attributable to U.S. population demographic changes and healthcare prices going up.

https://www.forbes.com/sites/elliekincaid/2018/12/06/the-amount-americans-spend-on-healthcare-is-still-growing-but-more-and-more-slowly/#66d12d242eea

And you  can find a good article on the breakdown of those costs in this article by  the Washington Post https://www.washingtonpost.com/news/wonk/wp/2016/12/27/the-u-s-spends-more-on-health-care-than-any-other-country-heres-what-were-buying/?noredirect=on&utm_term=.d76a430d79f9

White Coat of Death by Chris Ritchey

My  point is: This healthcare industry  is a HUGE , unwieldy , money  devouring creature ,  as we spend  to  stay  alive, enjoy a “healthy ” life for longer .   Americans are paying through  the nose.  The healthcare “industry” from doctors offices, clinics, drugstore/ drugs, emergency  rooms, ambulance services  hospitals , nursing homes – they  truly  do have a lucrative business https://www.payingforseniorcare.com/longtermcare/statistics.html

Percentage of all federal domestic spending that goes to the elderly: 46%. Average annual health care costs for older Americans who earn more than $30,000 a year: $11,000 … Average cost to stay in a US nursing home for one year: $76,680.
and yet  the hourly  wage for a nursing home assistant according to
https://www.indeed.com/cmp/Nursing-Home-Rehabilitation-Facility/salaries
Average Nursing Home / Rehabilitation Facility hourly pay ranges from approximately $11.46 per hour for Dietary Aide to $19.00 per hour for Admissions Coordinator
Photo Source https://smithandjones.com/resources/blog/rise-of-the-healthcare-consumer
“The consumer movement is partly an age-related phenomenon. Each generation of patients has unique emotional triggers and motivations for how they choose care providers. Seniors (age 70+) still follow their doctors’ recommendations, but Baby Boomers (age 45-65) treat healthcare decisions more like consumers: they research their options, challenge assumptions and rely on conversations to make their choices. Young adults (age 20-45) are more inclined to shop around and show preference for healthcare brands; while they won’t admit it, they’re heavily influenced by great advertising, social networks and word of mouth recommendations.”
All the cost involved in healthcare  comes from “we the people”  in the form of paying for insurances, through  various programs, government, private and out of  our pockets – we pay  one way  or another . Therefore, it seems to  me the healthcare industry  needs to “listen to  their consumers”. That is probably  wishful thinking  because  we the consumers are a “renewable source” so not really  important in the business plans of CEOs or CFOs.
One woman and her blog is not going to  change a damned thing ( and they  know it) , but at least the information will be out there and some of the situations that needn’t have happened on my  family’s latest “health  journey” could be addressed, by  Medicare , the hospitals and skilled nursing facilities  we have dealt with  in the past  three months – after all someone’s life , happiness and health  were at stake  and we are paying for it- big time .
I will document the good the bad and the downright ugly from my  perspective as a CONSUMER, NOT a MEDICAL PROFESSIONAL……….
To  be continued……..

April 9, 2019 at 12:52 pm 5 comments

March 3rd – The Rating – Chris Ritchey

ART WORK- CHRIS RITCHEY

It has been a short month  February  but one of the longest in other ways. We are now on our third  venue  with  regard to  “hospitals and rehab”. As we traverse yet another life changing road, I believe it is time to  rate the experiences.

Chris Ritchey Face book icon

Your hospital experience found me pretty  much  a novice and very  naïve, because your “bride” was part of the Cleveland Clinic System, Southpointe and Main Campus I  deferred to  her- a huge  mistake– I  will always believe that  to  be the case . That perceived mistake is not one I will ever make again.  Much  to  the irritation  of CEO’s, some Doctors, not so  much  the nurses,  but aides and hospital protocols I am involved more than just visiting at regular hour, I  am an advocate for “my  patient and loved one” and your sister  is just a younger version of me!

It is you  and your  strength  that has kept me , if not on an even keel  at least  afloat and once again it is anger that keeps me upright.

I know  the signs and I know you  are with  us on this journey , just as I  carried you  beneath  my  heart  and shared souls – that continues  as does my  love for you. I will write the story  of our latest journey , the Kudos, the positives and negatives of each  of the facilities – maybe others having similar journeys  will see the pitfalls and the solutions.

I love and miss you  more than ever ………

March 3, 2019 at 7:17 pm 2 comments

Feb 3rd- sick of hospitals- Chris Ritchey

Artwork Chris Ritchey Face Book page

A whole month  has passed since I  last wrote  and I  have in the last three weeks spent more time in ER’s  talking to  Doctors -that  don’t know us -explaining past issues. ICU becoming my  2nd home and all the different  protocols.

I want to  get off this band wagon of monitors, that beep  and fluctuate I have seen too many  of them since you  were in that dreadful Main Campus  Cleveland Clinic (Tausig).  I have traversed the  halls , waiting rooms in hospitals in Elyria, Westlake , Houston Texas  and Lorain.

I  am so  tired of the unexpected and having to  have the strength to  advocate.  This latest ill-health  go  around sudden and quick is going to  drag out into months. Touch  and go  10  days ago…….

The flawed Hand of the Healer by Chris Ritchey

.

I can spot an officious nurse at 10 places, know the ones that listen , talked to  professionals , that know their stuff I  am sure , but the accent is thick so  I  become infuriating to  them as I  have  to say  “repeat that please.”

 

I have sat in ER’s  waiting for results of scans and tests. I have sat in the waiting rooms with  total strangers that reflect the fear , hopefulness and dread that I know is written on my  face just as it is on theirs .

I am exhausted with illness, dying and decisions , keeping up my  strength  to be my  family’s advocate all the while wanting to  run away  and not have to  deal with  anything at all.  Life changes looming.

One of the most infuriating things is the fact that all these different hospital systems  but when it is  an emergency  you  are taken to  the  nearest ER . If they  are under a different network your health  records are not available, so  the ER does not have a base line as to  your previous health issues. Family  are left explaining in layman’s terms as to  your history and then when you  contact you  own medical team you  have to  explain the new issues. You  can request those medical records be sent  ( they  don’t like it  but insist).

Anyway   weeks of hell again looking at those monitors for every  heartbeat…………… and the horrible reminders of your last days flooding in my  brain as the smells , the squeak of rubber shoes on shiny  floor , the monitor alarms add yet another pain to  deal  with as you  sit quietly  waiting………..

I love you  still  and your bravery  still reminds me to  fight

Hands – Touching- Hands – art work Christopher Ritchey

 

 

February 3, 2019 at 11:54 am 3 comments

June 3rd – Coma – Chris Ritchey

Think I Am – Chris Ritchey

I used to love June -NOW another month that causes anguish to the soul- although life is bursting , skies blue, roses red I can’t abide the ‘happiness’- the June Brides make me cringe. I remember, the day you married and by doing so brought with it the eventual pain that was “gifted” to your family by those “people”

Lombardi (Vyka etc. )and Company

The “wedding anniversary” is also the day this year when the “Clinic” will “dispose of what was left of your life essence.
https://thatwoman.wordpress.com/2017/04/03/april-3rd-sample-of-life-chris-ritchey/

And here it was -the Clinic apparently had not “disposed of ” (their term) the sample upon your death as contracted . Now, I have to make the decision to call them re maintaining the samples – should I do nothing they will commence the disposal on what would ironically be your wedding anniversary !!!!

I have looked at the letter from those “other “doctors” telling me to make a legal decision otherwise they will dispose of….

I could not bring myself to ring them, or contact them – like an indecisive coward – I couldn’t bring anymore “finality ” into my being, I couldn’t make the decision, I couldn’t revisit the finality. I am not strong enough to face the reality of that. I know that by doing nothing the procedure of disposal will take place on what would have been your “wedding anniversary”. I wish I could dispose of those memories as easily but they come into being every June and with them the disgust I feel for the hypocrites of their religion. I am sickened by the controllers and “do overs”.

I wish things could have been different, that it was me that went on your last journey – not you. The memories of those last days and hours constantly being pushed away from conscious thought so I can “maintain some sort of balance”

Chris’ face book icon


Again the wondering and worrying of what was happening to you as you lay in that damned clinic like a lab rat on show. Could you hear as I sang to you, talked to you – tubes running everywhere. I asked for the Drs. to stop talking over you like a piece of meat that was cut off from “life”. I knew, as watched the stats, saw the rise in heart beats when they did that or when Sue Lombardi entered the room. (one of the reasons the head nurse expelled her as her presence aggravated you). Wanting “the invited others” by the Lombardis and co to leave the room as they did their collective death watch. I was frightened that if I did cause an issue it might effect or upset you and you unable to respond. Did you hear conversations? Did you know?

It was after you died and I was contacted by a young woman from the east coast in another June , she too was dying, going through the journey of hope with Hodgkin’s Lymphoma recurring , the trials, the chemo, the numerous hospital stays the days of dying.


Hi Lorraine, This is XXXXXXXX. I hope you still use this email. I found it in a post from Sept. Your blog is fantastic. Thank you so much for writing. It’s great to get a sense of the parents perspective. It’s a vision my parents like to keep from me. Take care.

We talked, via email, of how I felt and your dad as she was trying to help her parents and what they were feeling as they were being “brave”

She asked me if there was anything she could do to help me understand what you went through . I told her about your dad and how when he was intubated, after open heart surgery, in a induced coma and flooded with drugs as to how , although we could not see any movement , no squeezing of hands- he KNEW everything that we were saying and how awful it was to be trapped in his own mind.

http://www.jems.com/articles/print/volume-33/issue-1/patient-care/intubation-101-what-do-what-ca.html
In her case she too, numerous times had been intubated, drugged, paralized and comatose although she had managed to go through that so many times. Her Hodgkin’s came back 14 times before she eventually passed, she was still hopeful at the very end.
What she told me that email that June did help me some.


“your thoughts rush.. come in fragments .. you hear voices… see colors… , the movement is jarring yet you know you are not moving … you are between…. floating and yet tied… you struggle at times to surface as if drowning…

Assignment – Chris Ritchey-CIA


When you are brought back from the “sleep” you can’t really remember if you are waking from a bad dream , if the voices you heard are real and then you forget and move on to the next days. The doctors said I was dreaming that I couldn’t hear but I did tell one about his problem he was telling Nurse ( name given) , he was annoyed because someone had taken his parking place and he “was going to find out who”. He was very surprised.

She told me , for her, although what was happening was frightening she knew she was surrounded by her husband, mother , father and sister and they were keeping her safe. and that you drift in and out not knowing really what was or is real. ” it is all real your reality – to live with”

I have clung to her words , as a mother, hoping against hope that as you lay there those last days, never to come off that tube, you didn’t know the circus your dying was turning into – hoping that you thought you were dreaming and would awaken to sunlight not hearing the “dying words” – and you knew we loved you and still do

artwork Chris Ritchey

June 3, 2017 at 1:03 pm Leave a comment

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