It started Sunday night. The all too familiar pains that has been the precursor to the living nightmare to come. I was worried the whole night. But on Monday morning he seemed fine. Good in fact. Felt like a normal day. I was still scared. This felt all too familiar. I wanted to believe that maybe he was ducking around so he wouldn’t have to be on the machine. That’s what I have told myself because it’s easier to be annoyed at him than it is to feel the fear that is now in my heart with every passing minute.
Monday and Tuesday were pain-free. Thank God. But Wednesday night he barely ate a few bites at dinner and he was feeling it. By 12:37am I got The Shout. LISA! I rub his belly to help sooth the pain. 2:47, 4:45, 6, 7…it’s a blur of his pain, vomiting, and Baby waking up twice. Every time I say we should go down to the hospital, he tells me it will pass. And I want to believe. The other reason I want to believe is because who should I wake in the dead of night to watch my kids? By 7am I take action.
I call my parents to ask to take them. They thankfully say yes. and even call back when I hadn’t arrived in the 15 minutes I said I would be there. They offer to drive up to get the kids. I want to cry at their unconditional love and kindness. I call his mom and leave a message. I’m taking your son to T.O. Gen. You can call me on my cell.
I manage to get Franklin into the car which wasn’t easy. Between his weakness and pain, I got him dressed and into the car. It is 8:14am and the peak of rush hour. I bring plastic bags just in case. Thank goodness I did. But it’s getting so painful for him he’s telling me to drive on the shoulder. I do. But with on-ramps and off-ramps and morning rush hour it’s still not fast enough to get him relief from the pain. “Lisa, pull over. I need to lie down.” We’re on the DVP. “Pull over now. It HURTS! I’ll jump!” He said to call 911 for the ambulance to meet us so he can get some morphine. I do. I am at the Bloor exit pulled over. He gets out of the car to throw up. All the while screaming IT HURTS! Help me Liiiiisa. He’s now lying on the road between the sidewalk and the open of the car. withering in pain. I get some honks. I get out of the car and release my wrath of helplessness. ARE YOU FUCKING HONKING AT ME?!?
One lady pulls over and asks if we need any help. She advises that she’s first aid and CPR certified. Thank you for your help, but I’ve called 911 and he is breathing. LISA!!! Aaaaahh! Would you like me to stay? Uuummm…it’s up to you. I’ve called 911 and hopefully the ambulance will be here soon. HELP ME! IT HURTS!! I feel helpless. I feel afraid. Where the fuck is that ambulance. I call 911 again. They’re here! Hang up with 911. The woman asks if I’ll be alright. I put my confidant mask on and tell it’s not the first time and I’m going to demand satisfaction this time. I will get him his morphine, a nephrologist, and NG tube STAT.
I had written out his meds list on Sunday. Perhaps it is the piece of foreshadowing or is it fate that I sealed us to. They are fast, kind, calm, and caring. The first ray of light in this dungeon. I will need it because the next gantlet that is the arena of hell is the hospital.
He has been sedated with 2 doses of morphine on the ambulance ride. But by the time we are triaged in and registered it has worn off. I resolved that this time Now the death of my soul begins. I buzz the nurse. Twice. I go out to the nurses hub only to be met with avoidance of eye contact. I can hear him screaming from the room. NURSE!! Nuuuurse!! Please help me! It hurts so much! NURSE! I buzz again. I go back in the hall to “demand satisfaction”. An orderly tries to help, but when I ask if he is a nurse and he says no, I plead with him to get the nurse. It hurts! It feels like I am going to explode. Help!! He is withering in pain, sitting up, red-faced, and now crying. I am crying now too. I join in the despair and say to anyone who is listening. Please help us! I am going to die, Lisa and suddenly goes quiet and still. Franklin! Franklin!!
Finally a nurse comes. It’s that cocksucker dred from the last time. Faaack. He put the blood pressure cuff on, presses the button, then never comes back. The machine doesn’t give a reading, but craps out and gives code C06. Whatever that means. We actually believed he was getting his stats so they could start the roller coaster that is getting pain relief. I hate him. Franklin is yelling from the excruciating pain. Another nurse comes and gives 4 mg of morphine. It’s not helping. He’s begging to be knocked out. I ask if she could escalate and get a doctor here to order the NG tube and x-ray. He says he feels like he’s going to explode!! Thank God again we get a nurse who is relatively new because instead of the hardened indifference of the seasoned bitter nurses, she pages the doctor to come see him. The doctor comes and gets things happening. NG tube ordered. Another 4 mg dose can be given.
This young nurse Adrian knows she needs assistance. Thank God again. Because Nurse Bert is an angel. Franklin calls out for the nurse. In a soft gentle voice….I’m here. Nurse! I’m here sir. We’re going to help you. He is obviously seasoned and has the demeanour of a guardian angel. Bless him.
8mg of morphine, NG tube, and x-ray done, I wait while he sleeps. I text his brothers. I call work. I call my parents. I write. I am exhausted, but am so grateful that I can be here for him. To be his advocate, his voice, a comfort, a loving wife. My mind’s eye and soul seared with his pain.
We’ve seen Nephrology. Thankfully they are involved and aware. Unlike the last time where he was so overloaded with fluids he had difficulty breathing! We await the surgery team so he can get admitted.
I have now been awake for 40-hrs. I cannot think straight.
Updates to come….
eleisawifelife 
My thoughts and prayers are with you and Franklin….
Thank you, very much, for telling your story and being so prepared with his meds and history so they know what to do, and you insisting they do it promptly!!! The squeaky wheel gets the grease is the phrase that comes to mind. Please keep us updated with his progress. I simply cannot imagine being in so much pain you need to be knocked out with morphine just to escape it. When my mom was in so much pain with intestinal sepsis, which came on so fast my sister didn’t have time to wait for the ambulance and drove her directly to the hospital, it broke my heart. My cousin has EPS disease and she was in tremendous pain with it as well, and described it to me as the worst pain ever. I am thinking of you and hope that his recovery is swift. I live on Long Island, New York and we have good hospitals and bad ones. However, it seems to be w universally acknowleded thing that nurses can be so hardened and nasty. Good Luck. Post Again Soon!
Thank you very much kellysusan48, for reading and your kind words. I am glad I was prepared with the meds list. knowing the names, dosages, frequency and what they’re for. Pending on the doctor, they’ve probably never heard of it before since they are mainly for kidney patients. I really should just type it into my phone considering the paramedic took it, gave the info to the triage nurse, and still the doctors asked me what his meds list was and couldn’t find it in the notes. You’re right. No matter where in the world you are, there will always be nurses (and other professions) who are hardened and nasty. Unfortunately, their bitterness effects lives.
Eleisa,
Your post brought tears to my eyes, which is very hard to do given the heavy doses of antidepressants I am on. 🙂
You posted a link to this post on my Facebook page: Encapsulating Peritoneal Sclerosis Awareness.
My God, I know what you described. I was there so many, many times. We had 21 ER visits before Luis was admitted to the hospital for the last year and a half of his life.
The pain they experience is SO bad. The doctors and nurses, because they didn’t know what was wrong and kept misdiagnosing him, didn’t believe Luis. The last ER visit the doctor called Luis a junky and refused him pain medication. Put him in a wheelchair at the door wrapped in a blanket with security watching him until I was able to get there.
He had a prescription of dilaudid at home. If he wanted drugs he could have taken that. But he couldn’t keep anything down to take it… This time I took him in and thinking that I knew what would happen after almost two dozen visits I left and went into work for a little while. My mistake not to be there to advocate for him.
He was so humiliated he waited 3 more days vomiting and in terrible pain before he would agree to go to a different hospital. He never came home again.
The thing that bothers me the most is that when his doctors finally confirmed my diagnosis of EPS, his primary said, “My God, he IS in a LOT of pain!!!” Well, no s#!+! A month before he died they finally believed him.
I know that confident face you put on when there is nothing for the well meaning to do, even though you are not confident at all. You are in fact scared and unsure what will happen this time. But this is not something that you can share in a few minutes with someone not already involved.
I know trying to be nice but assertive to emotionally detached and even inept nurses.
I know the differences in the nurses and doctors. I have found two major groups: new to the field with compassion and little knowledge, and long timers with lots of knowledge but no more compassion (“compassion fatigue” they call it). Rarely have I found one with lots of knowledge and compassion.
I know about that long meds list. Luis had a list of 30.
I know about sleepless nights worrying about him or being in the emergency room in the wee hours of the morning and going days without sleep to make sure he is taken care of.
I know the relief that you feel when he is finally comfortable no matter how short a time it is.
I am glad that you have good family to help you with your children. Support is so important to getting through this.
I wish you the absolute best. You will be in my thoughts and prayers from now on. Please keep sharing with the group. So few people have any knowledge of this illness; I am very glad to have a place where those affected by EPS can support each other.
Take care and I hope Franklin feels much better very soon.
Michelle
********************
Luis Menendez
10/20/1969-5/14/2009
Michelle, I am so sorry to hear the struggles you and Luis had to endure. The one that scares me the most is that they think he’s a junkie because he asks for the morphine. OMG! My heart died a little. Poor Luis, in pain and wheeled out. Franklin tells them he doesn’t need the morphine anymore once the pain subsides. He tells me he doesn’t understand how people get addicted to it, since it leaves you in a cloudy disconnected state. And when you’re in such pain, it sounds like the only thing to get away from the hell. They did ask me this time when was the last time he had morphine, which looking back I thought was a bit odd. I was like “the last time this happened back in January, duh”.
I understands why Luis wanted to wait. It is hell dealing with the pain, but before it gets to the point where you need to be knocked out, you’d rather deal with the pain then deal with the health care system and some of their front line workers. Not all of them are like that. We met the wonderful paramedics, our nurse Adrian and Bert, that made a huge difference in making this ordeal out with a bit of dignity than last time.
I am so thankful that through the FB group you started I was able to find out more about this horrible side effect of years on peritoneal dialysis. It is the only one that I know of! And having people like yourself, kellysusan48, and brian r. from the group have been a godsend. Bless you all.
I wish you peace, Michelle. I am so sorry that you lost Luis. You sharing his and your life stories are helping others. Like us. Thank you. Stay strong.
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