J A C K I E

"A  rose by any other name would smell as sweet." - William Shakespeare

It's petty but it's getting under my skin.  An old friend of mine, writes my name as Jacquie.  She comments frequently on my Facebook page.  Perhaps because people see her comments so often, a number of my other Facebook friends have started writing my name as Jacquie, Jaquie, Jaqui or even just Jacq, I guess as a derivation from my full first name.  But my name is Jackie.  I have always written it as Jackie.  I sign my name as Jackie.  I sell my wares under the name "Jackie's Creations".  I'm not sure why it bothers me so much but it does.  It annoys my sister, Cathy, when people spell her name with a K after they have seen her name correctly spelled with a C.  Perhaps we are all sensitive to the use of our names. Perhaps I'm just nuts.

My name is Jackie.  And while it is pronounced just the same as Jacquie, Jacquie and Jaqui, to my eyes it does not look as sweet when it is not correctly spelled.

Recovering

“Find a place inside where there's joy, and the joy will burn out the pain.” - Joseph Campbell

The truth is, it was worse than I had feared.  The level of pain was beyond anything I thought I could withstand.  I spoke to the nurse practitioner the day before and asked her to make a note on my file that I needed to speak to someone in anesthesiology about minimizing the pain.  She contacted them but they were not prepared to have a conversation with me.  So twenty minutes before surgery when I met the doctor who would be in charge of keeping me pain free, I alerted him to my concerns.  I talked to him about my last experience with pacemaker insertion and about the pain I suffered when I had an angiogram in October.  I begged him to be gentle with inserting the needles and tubes he would be putting in my arms.  I told him about the seven tries it took the team at Mt. Sinai to get an IV into my arm.  He rolled his eyes.  

I sobbed on the operating table for three and a half hours.  They tried to keep topping up the local but it didn't work.  They tried to put me to sleep but the pain was so intense, I could not sleep through it.  They kept my face draped.  No one saw the tears though I felt desperate for someone to wipe my wet face.  My right shoulder alternated between the sensation of a hot knife stabbing me and an unbearable ache.  It wasn't even the shoulder they were working on.  After a couple of hours, I begged them to allow me to reposition myself.  They stopped so I could shift.

At the end of the surgery I told the surgeon that I will die before I will allow him to do that to me again.  The battery on the defibrillator will expire in five years or less.  He clearly felt terrible.  He told me that while the vast majority of people have no nerve endings inside their veins, it is not true for everyone.  Ninety-nine point nine percent of people would feel no pain other than the topical reaction to an ineffective or inadequate local.  But a tiny fraction of people have nerve endings there.  I am one of them.  He had only had this happen once before. If he believes my heart can withstand it, all future surgeries will be done under a general anesthetic.  I suppose that is something.

I cried on and off throughout the rest of the day and night, saving my tears for the time I was alone.  I didn't want to upset my family.  Still, I felt overwhelmed with the trauma.  I'm still trying to work through it.  I tried to sleep it away but I was not in a private room.  The woman in the bed next to me had a lot of company.  Nine people shouting over one another in Italian stayed until almost 10 P.M.  They used the bathroom in our room.  I was disconcerted and disgusted.  When they finally left, the moaning and calling to God in Italian started.  It went on all night.  I was desperate to sleep, dehydrated and in pain.  There was no care, not a single person offered me a glass of water.  I drank the ginger-ale that my sister left next to my bed.  I was so grateful.  At 3 o'clock I got up, used the bathroom and read for a while.  At 4 o'clock I dropped my heart monitor from my bed, pulling the leads off my chest.  I could hear it beeping at the nursing station a few steps out my door.  No one came and I couldn't manage to reconnect it.  I got up and walked to the nursing station to get it reattached.  At 5 o'clock I finally fell asleep.  

Six o'clock brought a technician wanting to do an ECG.  Six ten brought someone who ordered me from my bed to get weighed.  Then there was blood work.  I pointed to the large red sign on the wall behind my bed - no blood work, IV or blood pressure to be done on the right arm.  The technician told me to get over it.  She stuck the needle in with hostility and walked away leaving my right arm badly bruised.  The night nurse came in to do my vitals.  She was supposed to do them hours earlier but she hadn't bothered with me during the night.  Ten minutes later when her shift ended, the day nurse came and did my vitals again.  She asked me if I had my own meds with me and I told her I did.  She told me to take them and I told her I would after breakfast.  I cannot take them on an empty stomach.  For some reason, breakfast came late to the unit.  Mine didn't come at all.  She checked once again to see if I had taken the meds.  I told her I was still waiting for breakfast.  She called the dietary department.  They had somehow forgotten me.  The food was disgusting - cream of wheat, a slice of Wonder bread, still partly frozen and a prepackaged hard-boiled egg.  I could not face the cream of wheat.  I ate the Wonder bread and opened the egg.  The smell was nauseating.  I held my nose and choked it down.

I didn't get picked up for my 9:10 x-ray until 9:40.  I stayed in the x-ray unit for thirty minutes after it was done. There was no porter to bring me back to my room.  The nurse practitioner wanted to know where I had been when I got back.  I was late for my meeting with her.  It had thrown off her schedule.  I tried to be patient.  She is no doubt, a competent young woman but she looks to me like she is twelve years old and she spoke to me like I am a doddering old lady. We were interrupted by the technician who came to check my device.  The nurse left me some meds to take.  I asked what they were.  She told me to take them.  I pointed out to her that they were not my meds. She took them away.  Then back to the nurse practitioner who told me that she was reluctant to let me go home as my blood pressure had been so low in the morning though it was back to the low end of normal.  I told her I was going home regardless.  The doctor came to see me.  He apologized again, saying that he didn't remember the pain issue from my first pacemaker surgery.  I told him I would forgive him as long as he let me go home.  He agreed.  The nurse practitioner would not execute the paperwork for three more hours.  At nearly 2 o'clock I was finally on my way.  Home has never looked sweeter.

It is now two days later.  I have mostly stopped crying though I still have my moments.  My husband has gone back to work.  I am alone though my sister drops in to feed and water me.  I'm relishing the solitude - relieved that I don't have to hide in the bathroom or pretend that I'm napping when I feel a bout of tears coming on.  I put on a little bit of makeup.  I look a bit gray and there are dark circles under my eyes.  I'm trying not to upset anyone.  The sun is shining - some respite in an otherwise gray day.  Tomorrow will be better.

Heart Strong - The Sequel

"A well adjusted person is one who makes the same mistake twice without getting nervous." - Alexander Hamilton

It is ten o'clock at night and I am trying to drink as much as I can.  As of midnight, I'm cut off.  Tomorrow is heart surgery - the sequel.  I am nervous.  I don't know how I will cope with the pain of another surgery.  Today I went for pre-op testing.  I had a long chat with a nurse practitioner.  She gave me a book about life after defibrillation implant and told me to read it so I could ask whatever questions I may have tomorrow.  It struck me as bizarre.  The lifelong implications of the implant are significant.  It seems to me, they should have talked to me about them before they put it in my chest.  Nonetheless, I am an educated patient.  I've already read volumes about the procedure and the ramifications.  It is the procedure I wanted to avoid and just opt for having my pacemaker upgraded to a biventrical device.  But after a lot of reflection and discussion, I could not ignore that my three cardiologists agree, the chance of me having a heart attack is just too high. So here I am, the night before another surgery, fretting about the coming day.

I asked the nurse practitioner to remind the surgical team that the local anesthetic I had for my last two procedures did not work.  In both events, it took them three tries to elicit a reaction.  In both procedures, the anesthetic wore off before the end.  The pain was breathtaking.  I get that it is better for me to avoid a general if I can, but there is something seductive about the idea of going to sleep and waking up four hours later with the procedure done.  Four hours is a long, long time to lay wide awake, immobile on a table.  At my last pacemaker surgery, they administered a sedative to help me at least be groggy.  I did not respond.  They tried again.  I did not respond.  They didn't bother a third time.  And while they normally administer a sedative during an angiogram, given my history and serene demeanor, they didn't bother at all.  The procedure was only supposed to last an hour and a half.  It lasted three and a half and I had a vasovagal incident in the middle of it from the pain.

I am tired tonight and I want to go to bed but it is too early.  I need to keep hydrating.  The more dehydrated I am, the more difficult it will be to get the I.V. into my already fragile veins.  The more times they need to stick me, the more pain I will have.  The nuclear scan I had in November took seven tries.  God help me.  I can barely face tomorrow.