Category Archives: Myasthenia Gravis

Hospitalization Stress

On day two in the hospital, I woke up feeling relieved that last night’s irresponsible nurse had said that she would not be here today.  Actually, she never returned.  Today’s nurse was wonderful.  She was efficient, kind, smart, and helpful.  Yet her hands were somewhat tied by mistakes that had been made he night before.  I was patient when my morning medicine was late.  I am aware that it can take some time to get things rolling along for a new patient.  When I finally put my call light on, my nurse looked baffled.  She stated that the night nurse had not put through my admitting orders.  This nurse did not know about my med order. In addition to my doctor’s orders,  I had arrived with a list of my meds, doses, and frequencies.

This day nurse worked hard to contact the pharmacy and to fix what the previous nurse had neglected.  However, this meant that I missed my 7pm, 8 am, & 12 pm doses of Mestinon.  This is an oral medication that has helped me for these past two years, as I cope with Myasthenia Gravis, an autoimmune disease that effects all my voluntary muscles.  On my own, I have managed not to miss any doses, prior to today.  This really good nurse got my Immunoglobulin transfusions flowing without further pain or bruises. The night nurse was also great.  She helped me feel safe and cared for while in the hospital, quite a contrast to the previous day.  I had no idea what was going to happen the next day.  My doctor was angry about my missed doses.  He talked with me about how he hated to raise his voice to staff, but it had been needed.  I appreciated his advocacy.

The events of the morning seemed routine on day three.  My oral meds were on time. Breakfast was tasty.  My  nurse was friendly.  Mid morning, I asked my nurse when she would be starting my IVIG.  She responded by saying that I could not have it until 10pm.  I explained that the only reason for this hospitalization was to receive these transfusions each day.  She shook computer print outs at me to prove she was right.  I explained the importance of my treatment.  I stated that her papers were mistaken.  Four times, she said, “Don’t cry”.  This baffled me because my emotions were nowhere near tears. I was assertive, as I asked for my treatment.  Without explanation, at 2 pm she started by transfusion, rather than holding it until 10pm, as she said that she would.

I was enjoying an afternoon visit with my son.  At 4:30pm, I put on my call light for my 4pm Mestinon.  C NA’s responded, but my nurse did not appear until 5:10pm.  She announced that she had to pass all her 5pm meds first.  She would then bring my pills.  My son said, “She will bring your 4pm medicine after she passes her 5pm meds to other patients”?   I continued to use my call light.  I told others what I needed.  One half hour later, she returned and announced that I could not have my 4pm dosage until 7pm. Again she waved her papers at me as proof that I could not have the medicine that my doctor ordered for me.  As I explained  the importance of my medicine,  she said “Don’t Cry”.  I explained that my voice is weak and raspy for the past two years because by breathing muscles are not strong enough to move my voice box, not because I am crying.  My son reminded the nurse that I had told her earlier that my impaired speech is a symptom, due to my disease, not due to crying.  My husband said to this nurse, “Look at her, do you see any tears?.  I asked my nurse to call the doctor.  She scolded me and said the doctor doesn’t make the decisions: the pharmacy and nurses do.  I felt that staff forgot that I was sick and weak.

At this point, we could hear my son speaking to my doctor’s answering service.  He asked to be called back because of the poor care I was receiving.  He asked the nurse if she would like her mother to be treated the way that I was being treated.  She looked sad and she said,”No”.  “Well, this is my Mother and I don’t like how you are treating her. Do you say ‘Don’t cry’ to all your patients just to placate and shut them up? She is not crying.”

The phone in my room rang.  It was my doctor,  He apologized to me for the mistakes of the pharmacy and nurse.  He stated that if there were any more late meds, I should call him directly  He then spoke firmly with the nurse.  Arrangements were  made for meds from home to be brought to me so that I would  self administer from this point on.

This nurse left and I never saw her again.  The night nurses for future shifts were good.  By this, I mean that they did their job and for that I was grateful.  I had the same day nurse for the remainder of my stay.  My IVIG transfusions were started promptly at 7 AM on days four, five, and six.  My medicines arrived on time.  I was discharged on the evening of day six.  I was grateful for the kind, accurate care that I received during my last few days. I felt exhausted and relieved to have survived the stress and mistakes of the hospital.

It is two weeks since my treatment.  I have been feeling quite sick. This is a common side effect of the IVIG transfusions. The benefits will be here soon and I will feel this experience was worth it.

All of these experiences have been reported to proper authorities.  I hope education will be provided to the staff who need it and that praise will be given to those who fixed mistakes.  I have been able to forgive and move on .  This does not mean that the mistreatment was O.K.  It does not mean that I was not angry and scared.   It means that I can let go of it in the healing environment that I have created at home.

There will be future articles about this hospital stay.  They will about less extreme situations. Actually,  one of the scenarios is quite funny.  I also plan to write about what I’ve learned and how I hope to use it to help others.

 

 

 

 

Unusual Hospital Admission (I hope so)

I am hoping this was an unusual hospital admission and not the norm.  I am trying to have some compassion for my admitting nurse’s behavior because I arrived at change of shift  time.  I know this can be difficult.  This nurse’s comments and dirty looks toward the previous shift nurse told me that she wanted the previous shift nurse to do the admission tasks.

My nurse was grumpy and did look at me.   With a scowl on her face, she stared at the computer screen and scrolled down.  She said, “Why are you here?  I responded, ”  I am here for five IVIG transfusions.  My diagnosis is Myasthenia Gravis.”    She continued to scroll and then said  that there is no such thing as IVIG; you mean IVP; you are a kidney transplant.”I am not here for a kidney transplant” was my quick response; “My diagnosis is Myasthenia Gravis”

My bed was also the scale.  It showed my weight as being 20 pounds less than my actual weight.  I made a joking comment about liking the lighter weight.  I emphasized that my doctor’s scale and my scale matched.  She said she needed the bed scale’s number (wrong weight) to calculate my IV.

As she continued to try to argue with me, I suggested that she search for IV immunoglobulin.  She found it and with a click, she moved on.  IVIG is one of the few treatments for Myasthenia Gravis.  It was becoming very clear to me that she did not know anything  about my disease or it’s treatment.  Sadly, it was more clear that she was not interested in learning about it.

Four times, she asked if I was diabetic.  Each time , I said “No”.  She seemed to be obsessed with her diabetes question.  She seemed to forget my answer each time.  Several times, I told her that I need oxygen  and that I  have used 2 liters of oxygen for the past two years.  I looked at her blank face and wondered if she noticed I was short of breath.  I also  did not receive my Mestinon, the oral medicine that I have taken for the past two years.

This admitting nurse attempted to start my IV four  times  My arm was quickly purple and swollen.  She said , “Look at how puffed up your arm is..that proves I am in your vein.”  Her logic was so bizarre.  She then said she would not try any more and that the IV would be started the next day.  She answered her phone and she argued with someone who was reprimanding her for not having given morning meds to a different patient.

Our relationship began when she brought me a pill at about 7:30pm.  She announced that the pill would relax me and make me sleepy.  I asked if she was still planning to do my admission procedure and start my IV.  She said “yes” and I said that I would decline her 7:30pm sleeping pill. Her admission interactions concluded about midnight.

I asked for some hot water to use for the herbal tea bag that I brought from home.  She told me that patients were not allowed to drink hot drinks, in effort to prevent burns. This was not true. Hot soups, tea, and coffee were brought regularly to patients by others.  Another nurse saw me running tap water, as I tried to make my tea.  She immediately brought me a cup of microwaved water while telling me I should have asked my nurse for hot water. Yikes????

Needless to say, I was sick and weak during this episode. I would like to say that things got better during the next six days.  It did not get better.  I will be telling stories of my experiences in upcoming blogs.

 

 

 

Health Care Visit Day

IMG_4193 (2)The day began with a reminder call that my portable oxygen tanks would be delivered between ten and twelve o’clock. “O.K.” is my standard answer.  I have learned that the delivery may happen at any time.  Sometimes the delivery time may be a different day.  These tanks are not an emergency.  They will be available for times when I leave the house.  I have a large concentrator that is to be used  around the clock at home.  I also have a large portable tank that will be available in case of a power outage.

I have needed these tanks for the past 1 1/2 years.  I smile as I remember the beginning of all this.  I cleaned the house to the best of my ability.  I wore clothes that would have been reserved for dress up.  Now days, the oxygen delivery finds me and the house “as is”.  What was once a big deal is now a casual occurrence.

The need for this delivery has not yet become a casual occurrence.  A huge part of me wants to say that this delivery person must have the wrong house.  This part of me finds it hard to believe that I am considered this ill.

For many years, when I worked for a family service agency, a large part of my job was to serve people via home visits.  I was the one who rang people’s bell and entered their homes.   I was the healthy one who climbed over drifting snow to get to the door.  They put the Christmas tree out for me.  Sometimes I would be the only visitor that season.

I still feel like that provider of services.  As I open the door and accept the oxygen, I tell the provider how I am doing.  The other part of me is also present.  That part says that the person must have the wrong house.  They better leave now because I have to go to work.

 

 

 

Introversion and Chronic Illness

IMG_0587 (2)The traits of introversion are an asset when someone is burdened with a chronic illness.  It has been two years since my diagnosis of Myasthenia Gravis.  All of my muscles are weakened.  My arms, hands and legs have lost strength.  I have double/triple vision.  It is difficult to speak because my chest muscles are not strong enough to move my vocal chords. Over exerting makes all of this worse.  Rest has been emphasized as a key part of treatment.  When this began, I was still working.  I expected the illness to be followed by recovery.  I grieved my busy life.

Prior to this illness, I developed the ability to go inside myself for answers.  I love to read.  I love to make art.  I find myself in the zone, when creating.  Seclusion doesn’t scare me; it delights me.  Silence fills me up.

I know people who need commotion and drama to fill themselves up.  They need outside structure and conversation.  A person with those needs would have a much more difficult time coping with the isolation  of chronic illness.

I am not accepting my situation.  I do miss my activities.  However, I believe that I am having an easier time because I can find joy in solitude.

 

HOPE

IMG_3943 (2)Hope in itself is healing.  I left my Doctor’s appointment with a smile on my face.  I almost had a spring to my step. My doctor’s parting words to me were “I will help you.”

These past two years I have learned about acceptance.  I have found ways to live within limits.  I have given up many activities.  I have practiced doing things differently.  Muscles throughout my body are weakened by Myasthenia Gravis.  Hopelessness moved in right next to acceptance.

Today I am beginning a new medication regime. My physician’s hope is contagious.  I am hopeful.