hello OTI dear friends!!! Please indulge me and read this short story (a real story!)- if it helps ONE CAREGIVER or ONE person to take an alternate route than I did, it will have been all worth it. September 15th- flu like symptoms put me on the couch with some fluids to hydrate- and Tylenol to take the aches and pain away. I am a caregiver to my husband whom is waiting for a liver- UNOS-going on 6 yrs now as many of you know. I honestly cannot say I have been much of a caregiver to him for about two years now. The anger, bitterness, and frustration of waiting for a life saving organ with no end in sight whatsoever has worn us both down. I began shutting down long before this flu hit me. I was overeating, using food to feel, Id tried Overeaters Anonymous but unlike the other 12 step programs my husband and I had much success with in our 15 years recovery from drug addiction, this one didnt feel right to me. I had been existing on junk- fooling myself into thinking carmel ricecakes were sufficient for a diet- two bags a day-along with ten sugar packed yogurts- and sneaking in junk food. I would say over and over did you take your meds Peter? but not a real inquiry, more of a compulsive need to feel I was in control. I would fill his glass of Gatorade when it was empty, and was barely monitoring his med refills and appointments for almost everything BUT the transplant institute were blown off- (cardiology for his pacemaker, urology for his kidney stones, and on and on it went) He didnt want to go, and I didnt have the energy to nag him anymore. We were not living, we were existing. I was miserable. I was out of control. I felt behind all the time- as if I could not catch up to any of the goals I had, no matter how large or small. I needed help, and I knew how to ask for it- but I did not. I simply was shutting down, and we are now back to the couch- where my flu was taking a turn for the worse. My heart was pounding- I could barely sleep- my skin was on fire, my bones felt as if they were breaking- and now Id developed some bowel issues which NEVER happens to me. This is a BAD flu- wow I said, because at the time, I knew it all and had no need to call my wonderful PCP. Fast forward 4 days later, where I am now almost incapacitated. I made myself go to an appointment for therapy, but was turned away by my wise therapist with the advice go to your doctor ASAP. This was September 19th. Within 12 hours, I would be in the Intensive Care Unit of Beth Israel Medical Center- the very hospital my husband and I spent the better part of the last 5 years in. I was on the WRONG side of the bedtable! I told my terrified husband to call an ambulance. He was in denial at first, as Id been hibernating on the couch, and he felt I had the flu- as I had said I told him again to call an ambulance, because I was in the bathroom ready to jump out of my own skin- and my heart was racing- Id been a nurse for a few years before my addiction and own stupidity took me to the floor and I passed in my wings- so I knew what a tachy and thread pulse was- and I knew I had one. 152 beats in a full minute at rest, and I could barely palpate the pulse on my wrist- it was light and thread. I was going into shock of some kind Peter called the ambulance ,and they came about 12 minutes later- it felt like five years. They treated me as if I was a pain in their ass- So you have a stomach ache? they said in a condescending manner, I said yes, but a little bit more than that. They finally took me seriously when they took my vital signs, and away we went pretty quickly to the ER. They brought me into the ambulance bay where my only company was 3 drunk people. They were different ages and socio-economic levels- one being a college student who was crying because her parents were being notified. The other two were regulars. I was scared because the two nurses on duty did not seem to understand how sick I was, and I begged them to at least go and ask a doctor to come and give me a once over because quite frankly , I was losing it. The pain in my head was searing as if I was going to burst, and my stomach was making noises that Id never heard in anyone before. The pain in my whole body was exploding- and I could not even walk at that point. All I could do was hold onto the side rails and say over and over againPlease God, help me. I am SURE I am not telling anyone here anything they have not faced in their own lifetime. That is one reason I am writing this. This is the point where they separate the agnostics from the believers- if there was ever a time where I felt that God was with me- and though I suffered, was going to do great things with me- or, let me come home to His loving Arms, it was now. All the people I know here on FB, all the people I have in my family came to mind- their suffering and pain made me hold on just one more minute- one more second- knowing that if they came through, then so would I. For once in my life, I could not even talk- even when spoken to. FINALLY I Was wheeled back into the ER- and within a minute I was sent to a Cat Scan, and I was screaming in pain the entire time- and once I returned from that and began getting sick from every orifice available- I was being prepped to be sent to the ICU. By now I had taken leave of my mind and was almost combative- and they were asking me if I wanted to be a full code- I dont know about all of you, but when you are wanting the sweet relief of death- not even caring about those you will leave behind- this is NOT the time to be pondering such questions. I told them that if this was the way I was going to be left to feel with no end in sight, then NO, I dont want to be a full code. They called my husband, who thought Id be getting some IV Zantac and fluids and sent home- and he was flabbergasted to hear them using words like unstable vital signs and if the need arises do we have your permission to rescuscitate? I am not being dramatic, this actually happened. I have no drama left IN me. The diagnosis? (and here where I will say it, but hope that it is used discreetly) COLITIS- a massive case of colitis where my colon was visible from the outside of my abdomen- 4 times the normal size- and a virus had apparently knocked my immune system down and opened it up to Clostridium Dificile- or C-DIFF a highly contagious infectious disease of the digestive system- and its hallmark is diarrhea and an incredibly foul odor that most nurses and doctors only need experience one time- and usually dont need to even test to be able to diagnose. Id been exposed to this as a nurse dozens of times-Id never had any digestive issues save the occasional hernia or acid reflux. But I had opened the gates to poor health by ignoring all the life preservers God had sent me- one being my two dearest friends Al Simmons and Bob Aronson- who for years had been predicting this very event- but gently allowed me to make my own mistakes. The virus knocked me on my butt, and then somehow the C-diff invaded my colon and went like an errant locomotive. It was the worst case the infectious disease people had seen in many years. I was, of course, in the ICU under isolation- I dont remember much of that- except wondering how people who are not blessed with good, clean water get by each day- my thirst was unquenchable- even on a liter of fluid IV per hour- they told me that the fluid actually LEAVES your veins to go right to the infection- I didnt know that- and I began realizing bit by bit- I didnt know a dam thing. I thought I did- I thought I had a good grasp on all things medical. I could not have been more wrong. The nurses and doctors in that hospital are brilliant- 99% of them anyways. I wont mention the one or two ignorant nurses who truly made life even more unbearable- because it would diminish the message that the 99% are gifted- and sent straight from heaven. The smallest of tasks- wiping my body with a warm, medicated towel made me cry with gratitude- a fan the nurse dragged in for me so I could get an hour of sleep = HEAVEN. Do you know what I mean? The smallest gestures are the biggest ones! So many of you already know this- having spent so much time in the hospital. Id love to hear about the small gestures you received- and I KNOW you have not forgotten them!!! After two days in the ICU, I was transferred to a private room in MED SURG. I had no idea that I was about to spend the next 8 days there. I shook, rattled and rolled. I cried out in pain, I went from bed to commode, ed to commode- and the only other activity was drinking water- icy and cool water- and then, apple juice. I drove the staff crazy because I was drinking well over a liter of fluid per hour- so they began lining up the beverages in the beginning of their shift. I didnt care if I EVER saw food again- I was on IV Flagyl, and Vancomycin- then Vancomycin by mouth but in a clear, bitter tube of fluid. Apparently C-diff has been found (the severe cases) to respond better to IV Flagyl and Vancomycin by MOUTH rather than IV. Surgery came in several times a day, and at the time I did not know this but I was as close to having my infected colon parts cut out of me as a person could be- but they wanted to truly avoid surgery- and get the infection under control. My White Blood Cell count continued to climb- and the Infectious Disease people- whom I at first called QUACKS decided to triple the Vancomycin. That very night- after the second dose of the tripled Vanco- I woke up and froze. The nurse came in and looked at me holding on to a frozen position and said are you al right? and I said yes- thats the problem I am alright. I said I dont want to move- I am supposed to wake agony-but I am not IN agony I had turned the corner. Meanwhile, back at the very small subsidized city ranch, my poor husband was , for the first time in 15 years- ALONE. He didnt want to ask for help, he didnt want anyone checking on him, and I was helpless and had no control over his decision. I knew he wasnt eating, and was probably barely drinking- but all I could do was call him when I wasnt suffering- and beg him to take his meds, eat something- and somehow take care of himself. I couldnt care- and the guilt couldnt even come in-I couldnt even feel could only focus on treating the pain, and receiving help. My heart was breaking. He could not even visit- as I was infectious- and he had not even had his flu shot yet- the doctors told me to tell him to stay home, and not even enter the hospital to bring me my glasses. (he did) I had NO idea how I was going to go home with this disease, and no idea how we were going to get by- but again no condition to even care. They told me when I was admitted to the ER that I was in shock, and as close to being septic as a patient can be. (The infection goes into your blood stream and attacks the body) This was a strange place for me- Id been the one calling relatives, visiting, worrying, and feeling powerless and sometimes even guilty for having my health. Now, I was the sick one- I was the one who needed care. I just fell to my knees, and simply broke. I knew nothing. I had been arrogant- I had been rebelling against the very people who wanted to do nothing but help me, and help my husband. I embraced my helplessness- and I learned, finally, how to ask for what I needed. My Mom, who had been a wreck for days- finally got a call from me- and I couldnt talk for long- I had no stamina for anything- but she asked me Why do you keep saying Im SORRY to every nurse or aide that comes in to see you? This was because I was sorry. I was sorry they had to clean up after me. Sorry they had to help me to the bathroom. Sorry Id been so miserable for so long. I was sorry not just to them but to those who were in MY care! I finally began to get well- a little bit each day- I was discharged on the 29th- and collapsed in my house- and got on the phone and called for MORe help- and now, we are starting services of every kind- from laundry to food shopping- to help with cleaning. We are in the care of Elder Services- (because I am disabled)- and it is a breath of fresh air to be able to feel a weight off my back. My husband? He made it through- and had a youthful appearance hwen he picked me up! I had been smothering him with my bitter and angry feelings and rhetoric. He had ten days of calm, peace, and meditation. We appreciate each other more now- we eat MEALS together because I am fixing them- and no longer afraid of the kitchen! I can say thng? It was a GIFT. Has anyone else ever felt this way? I lost 24 pounds- and it feels GOOD. I no longer eat SUGAR. I fix small, nutritious meals. We have a schedule- and it doesnt include sleeping all day. My White count is normal- infection gone- but I have a LOT of medical issues that have gone unaddressed by me. My pituitary gland has a lesion- a common issue but a pressing one- as my prolactin level is 40 at this time, and has been rising for over a year. Thyroid issues, and diabetes Type 2 are up for grabs. But now, MY appointments are JUST AS IMPORTANT AS PETERS! Who knew? IF I FALL, then he will. (although he was a CHAMP- I love him so much!!! He has been a hero to me!) My life is full- and I have learned what I was told years ago...If you dont care for yourself FIRST, you will never be able to care for your husband or anyone else . They say on an airplane in an emergency that when the oxygen mask drops, to put it over your face first, and THEN assist your child. This is the best analogy I have heard for a Caregiver. I was, for a period of time, a CARE-TAKER. I bet you know the difference. I didnt, but I DO NOW. Peter always said to me Slow and steady wins the race. I guess I had to figure that one out for myself. He will get his liver- and we will rejoice. Life is good now, and his turn at health will come. I declare it!! God has ordained it. WE WILL CARE FOR EACH OTHER. Thanks for reading this- and GOD BLESS THE OTI...I could not have made it without you!!!
Posted on: Sun, 12 Oct 2014 15:57:00 +0000
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