When I woke up on the morning of January 1, 2001, it was just like any other morning. Had anyone traveled back in time to tell me how my first year of life in the new century was going to end, I would never have believed a word of it. It would have been easier to convince me that the time traveler was a lunatic. I was busy taking care of my Mom, and had been her caregiver since the end of 1997 when she had her first major health crisis. For a while back then, it seemed like Mom might recover quite well. Over time, however, she gradually deteriorated. By the new century, Mom had become incontinent. She'd had a stroke during surgery back in 1997. She could no longer feel things inside of her mouth and so no longer wore her dentures. If she consciously thought about using her right hand or arm, she told me everything seemed backwards. When she was released back in 1997, I was told she had cognitive deficiencies and she couldn't ever be left alone. Eventually, those deficiencies became dementia.
My world, the "real" one with "real" people, was very limited as a result. So the main part of my life was through my computer. I belong to a 12 step program, found meetings online a few years earlier along with a great bunch of people who became my online support system. Several of them actually became close friends. I was even planning to go down to Florida for the wedding of the daughter of one of them. Otherwise, life just kept creeping along. My kids, a daughter 19 years old and a son 18 years old, headed back to school after the winter break. And my husband worked hard.
I believe it was in February that Mom got sick with a massive kidney infection. For me that meant lots of running back and forth, lots of phone calls with doctors, lots of worrying. Mom always seemed to get worse whenever they had to put her on the respirator (called intubation) for any reason. So I always explained this to doctors who had to do anything on her that might require intubation. We had a few rough days, but within 4 or 5 weeks, Mom was home. It was also during this same period that my 12 step qualifier decided to seek help and, of course, I was the transportation which meant a round trip of almost two hours to be repeated when it was time for my qualifier to return back home.
Of course once Mom was home, we had the visiting nurse and various therapists coming to the house for a while. This house is not used to having company, an unfortunate course of events; so even though these people were helping Mom, it was stressful. She recovered as well as she could have.
As June approached, I got more and more excited. At the beginning of the month, I'd developed a bladder infection, was given the usual antibiotics, and had it flair up again. At the end of the month, I flew down to Tampa on my second flight ever and my first flight alone. Prior to leaving, I'd learned I could put Mom in a nursing home for respite care so I could take a vacation and that's exactly what I did. I just couldn't and wouldn't expect my family to take care of her. I typed up a detailed list of Mom's requirements and preferences, leaving it with the nurses when I dropped her off. Mom wasn't too happy about being left there, but she seemed to understand after I explained it to her.
The trip was fantastic!! Life had been so crazy for a good 3 years or so. On that trip, I felt like I'd walked into a different world. I had no cares or worries. I felt the most relaxed I'd every felt since childhood and discovered, maybe for the first time, that it was possible to have serenity in my life.
God must have known how much I needed that trip. From the moment I landed back home, there seemed to be nothing but chaos in my life. There was construction at the airport and they had changed where arrivals go. It took more than an hour for my husband and I to connect. The next day I went to get Mom only to have her end up in the hospital after she choked on her lunch. She was in for a week, home for a week, and had some kind of episode at home that put her back in for a week. They never did figured out what had happened. And yet again, my 12 step qualifier sought help and again, I was the mode of transportation. Another two hour round trip there and back.
It was during this second hospital admission of Mom's that I spoke with an attorney. I could see that as much as I'd hoped Mom would get back to where she was before she first got sick, she wasn't going to go any where near that; but rather, she was gradually going to get worse. Mom wasn't good with money and never really kept her legal papers in order. I am thankful that she finally listened to me in 1998 and updated her will (took 11 years after Daddy died). I had also told her what little I knew about giving someone power of attorney; so while we were at the lawyer's office (a different one than the one I spoke with in 2001) where she was updating her will, Mom also took care of the powers of attorney. And since I lived with her, she gave it to me. I did feel better after that because I could now legally do what I had been doing all along; taking care of business.
I explained to the attorney in 2001 that I wanted to do whatever was necessary to protect Mom's assets so that they would always be there for her. He explained to me that he thought the best thing to do would be to file for guardianship of Mom and ask the judge to award me the house. He seemed to think there would be no problem since I'd been living with first my parents then Mom since before my son was born in 1982 (I'd moved back home with husband, daughter and son to be in tow) and was Mom's caregiver.
After much thought, I told the lawyer to go ahead and start the ball rolling. The lawyer had also explained to me that I could sell some of Mom's stocks to get work done on the house if work was needed. And it did need work. The roof had been done by my brother and father somewhere between 1974 and 1978 when my brother was in college. The siding was 18 years old and some had blown off. The windows were 47 year old metal casement windows.
When Mom was released at the end of July, she was put on oxygen 24/7. Yes, she does have emphysema. She also had to have all of her solid food pureed and all of her liquids thickened. She had gotten just a little bit worse but was still able to get around on her own and feed herself.
Also by this point in time, I was running around to doctors ending up with a urologist. Tests discovered that I had a kidney stone, surprising both the doctor and myself. I had no pain from it (Thank God). So the next step was to get it blasted with sound waves. The "blasting" was scheduled and I spent many hours on the phone trying to find someone to be here for Mom while I was having the outpatient procedure done and for afterward in case I wasn't up to it.
It was also during this time, August 2001, that I'd found a contractor to do the work on the house. He started with the roof in the middle of the month. So while all that banging was going on, I was searching for some kind of help with Mom. Three days before my scheduled blasting, Mom fell down on her way to bed. Her slipper must have shifted when she was trying to step over the hose from the oxygen machine and when she put her foot down, she lost her balance. The next morning, she couldn't sit up in bed (and mind you, she slept through the night without a problem). I called 911 more or less as a precaution. It turned out she had broken her hip. She had hip replacement surgery done the day before my kidney stone blasting.
So that's what, the month of August, 2001 was like. I'm running around to doctor's offices and labs for tests, dealing with construction workers, trying to take care of Mom and family, running to the hospital once Mom was admitted. My bladder problem was waking me up many times each night. In fact, the night Mom fell I was up about every 30 minutes. Since I have to walk passed Mom's room to get to the bathroom, I know she slept well. So when I went for the blasting, I was exhausted. After the very first blast, when I realized it didn't hurt, I fell asleep and I slept through the whole procedure, which went well.
September was "normally" hectic. I say normally because that's what running to the hospital had begun to feel like--something normal. Plus I still had doctor's appointments and post procedure tests to get done. The stone was successfully blasted but I still had what was becoming chronic bladder infection symptoms. And now, the contractor had started the siding work. So again, I was dealing with construction workers. Mom's hip replacement surgery was successful and she started recovering quite well at first; but eventually she ended up with three cases of aspiration pneumonia (where she breathed in some food that gave her pneumonia). So that weakened her and prevented her from doing physical therapy in the hospital. At the end of September, Mom was transferred to a local nursing home where her therapy was to continue.
October was spent with me running back and forth to the nursing home almost daily, bring Mom's laundry home to bring back to her another day. I had a bladder biopsy done at the end of the month which came back negative for bladder cancer. Still, the urologist had no idea what was wrong with my bladder and the bladder infection symptoms were gradually getting worse. The construction workers discovered some nasty water and insect damage out in our carport when they stripped the old siding off. It turned into one of those "you might as well" things you hear about. The carport had been enclosed by my Dad with mostly windows, making it more like a sun room. The roof was held up by wooden posts and the cinder block wall on the outside of those poles had a thick plank of wood sitting on top. That's where the damage was. We had discussed closing it in someday and making it into a room but it turned out that someday was now.
As October rolled into November, Mom gave up on her physical therapy. Since she still needed speech therapy to help her learn how to eat better, she remained in the nursing home. When the windows were replaced in the house, a few places inside were damaged. I didn't know that repairing that damage wasn't part of what I had contracted for; and since this guy was slow getting supplies to his workers, I decided not to pay him any more money to do the work. I hired the guys he had working on the house on my own.
There was so much more we wanted to do with the house but we were getting close to the holidays and had run out of cash. So I worked on getting the living room presentable for the holidays. My husband painted and I shopped for shades and curtains. When it was finished, it looked great.
I had eating problems all year. As I'd mentioned earlier, Mom couldn't feel if there was anything in her mouth and she had stopped wearing her dentures. She was still able to eat regular food at the time, it just had to be cut up small like you'd cut it up for a little toddler just learning how to eat. So when Mom ate, if there was still food in her mouth from one forkful of food when she put in another forkful, whatever was in her mouth would fall out. Eating with Mom was difficult at best. Initially, I had become what I call selectively anorexic. I couldn't eat at dinner time, the only time we all ate together. In fact, just preparing dinner would start my stomach off on a bout of nausea. After a while, with all the things going on around me, and all the stress being thrown my way, I started to forget to eat. My husband would come home asking about dinner and that's when I'd realize I hadn't eaten that day. And when I did eat, it wasn't very much. Was I anorexic? Maybe. Also, I'm a type 2 diabetic and am supposed to be keeping it under control with diet, exercise and medicines. But if I didn't eat, I didn't take the medicines.
So now we have me running around to the nursing home, doctor's appointments, and for tests. I'm dealing with construction workers and trying to deal with my 12 step qualifier. My car was breaking down in minor ways but still causing stress. I'm not eating right or not eating at all and I'm feeling like I'm being pulled in all different directions.
In the middle of November, I developed a boil in my groin. I'd had them in the past but this one seemed more painful that I'd remembered. A doctor had once told me to use hot compresses to ease the pain and to help bring it to a head (this is really gross), and I searched around the house for something called "Boilease" but had none. On the Monday before Thanksgiving, I woke up with a fever of 102. I'd also gotten a phone call from the nursing home to make arrangements for a meeting to discuss Mom's discharge planning. I told the young lady I'd call back when I was better. I thought I was coming down with the flu and I knew that they don't want that at the home.
When I still had the fever the next day, I made an appointment with my doctor. I didn't have the flu. My lungs were clear as was my nose. I showed him the boil, which may actually have been a carbuncle (since I couldn't see it I'm not sure but that might explain why it was more painful than usual). He gave me the same advice on how to "care" for the boil that I'd gotten in the past and he gave me an antibiotic. My daughter was working on the pumpkin pie for me, trying to help me with my pre-Thanksgiving dinner work when the oven died-mid pie baking. We ended up taking everything over to my mother in law's house on Thanksgiving Day because the repairman I'd called couldn't fix the oven before the holiday. So I made the stuffing here at home, my daughter stuffed the bird and then she took everything over to get it started. She did a great job!!! My mother in law hadn't made a Thanksgiving dinner for so long that she was a little nervous (she does have a nerve problem), she did help my daughter as best she could, but my daughter did most of it from what she tells me. When the turkey was done, I was able to make the gravy.
The day before Thanksgiving, I'd noticed some pain in my abdomen on the left side. I thought that I had pulled or torn something in there trying to get up off of my futon the night before without sitting on the boil, which is a very painful thing to do. The pain was a little worse on Thanksgiving Day, but Advil seemed to be helping and I figured time would heal things. The boil began draining on its own the day after Thanksgiving and I had begun sleeping downstairs in my recliner in the living room because it was closer to the only bathroom in the house. My days were spent on that recliner, sleeping or trying to, taking my antibiotic, trying to eat or drink, and trying to get out of the recliner to run to the bathroom. I finally got to the point of putting a waste basket next to me on one side and the package of incontinence pads next to me on the other side. If I couldn't get out of the chair fast enough to make it to the bathroom, I just changed the pad right there in the chair under my blanket. I also made sure I had something underneath me so I wouldn't wet the cushion.
I found it quite embarrassing and degrading to have to wear those pads. But by this time I had to wear one whenever I went out just in case I couldn't get to a bathroom in time. Plus I had to always carry them with me. And wherever I went, I had to find the rest rooms first.
On Sunday afternoon, I still had a 102 fever. I knew that was not a good thing. The medicine should have already started working on whatever was causing the fever in the first place, unless it was viral. So I finally called my doctor. He gave me a choice to see him in his office the next day or go to the hospital. I told him I was too feverish to make any decisions so he sent me to the hospital.
A few hours later, after showering, shampooing and drying off, my husband was wheeling me into the emergency room. It didn't take too long for the triage nurse to see me; and after taking some information, getting a few vitals, and giving me some Tylenol, I was sent back out into the waiting room. I had my husband take me out for a cigarette and by the time I was done, I was wheeled to a bed in the ER. A doctor came in, asked questions, took a look at the draining boil and decided it needed lancing. I asked him to numb the area first, and thought he had done so; but as soon as he started doing whatever it was that he was doing, I felt pain like I'd never felt before. Little did I know that this was nothing in comparison to what I was about to feel. For some reason, he had placed his hand on my abdomen and made a comment that it was distended. All I knew was that it was so swollen on the left side that my navel had migrated to the right of center. I never saw any discoloration when I looked at it in a mirror, but then I hadn't ever really looked all that closely. I was admitted, brought up to a room, and settled myself in for the night. My husband went home.
The morning of the next day was rather quiet. I don't remember too much about it. Breakfast and lunch came and I ate what I could. I think I had a catheter in my bladder because I don't remember having to get in and out of bed much. The afternoon, on the other hand, was crazy. I went for x-rays. I had blood drawn. I went for a CT scan of my abdomen. Back and forth. Forth and back. Then they tell me I'm headed for surgery.
I was in pre-op when the surgeon asked me if I'd called my husband to let him know about the surgery. I never had the chance. So someone handed me a cell phone and I looked at it like it was something alien. I do not know how to use one of those things. So someone dialed my home phone number, gave me the cell phone, and I proceeded to hang up. The second try was successful. My husband answered and after saying Hi I told him I was headed for surgery. The next thing I knew, the surgeon asked if that was my husband and grabbed the phone out of my hand as soon as I said yes. I thought that was extremely rude. I didn't know at the time how seriously ill I was and found out later that he was telling my husband to get to the hospital ASAP because I might not make it through the surgery.
I also have bed vision and have worn glasses since I was 6 years old. They had already taken my glasses off and were wheeling me into the OR when I noticed my urologist there. I wasn't sure at first until I heard his voice. I thought that was a little strange. To this day, I don't really know why he was there. I keep thinking he might have been there because maybe he thought the biopsy he'd done a month earlier had caused this problem. Since researching this disease, I doubt that is possible. From what I've read, the bacteria that causes this disease is virulent and moves fast. If the biopsy were the cause, I think I'd have been in the hospital 2 or 3 weeks before I was. I don't know how long this surgery took, and I don't remember being in the recovery room. I vaguely remember them calling out my last name as they were wheeling me to my room and I think I heard my husband's voice.
I do remember being brought into a room in the ICU. In my drugged up haze I recognized it because my Mom had been there a few times. I think my husband came in briefly after they had me all settled in but I don't think he stayed long. My memory of that night is one of hourly finger pokes to check my blood sugar and a sweet nurse apologizing every time she had to poke a finger. And I vaguely remember someone telling me that I had a button I could push if the pain got really bad.
The next day, the nurse wanted me to get up out of bed. Well, I was ready right then and there and started to make the attempt to do so. She stopped me and told me I had to wait until there was at least one more nurse or aide there to help. I really didn't think it was necessary. I mean gee whiz. My computer is upstairs at home. Mom, the bathroom, the kitchen, the washing machine--they are all downstairs. So I was up and down those stairs many, many times daily. Since I hate difficult patients, I didn't want to be considered one myself; so I listened and waited.
I was shocked when my feet hit the floor. These legs that had run up and down the stair at home so much in the past were like rubber. I was so weak it was unbelievable. It wasn't exactly the way I wanted to get a better understanding of what my Mother had been through over the years. But the understanding came like a flood any way. And I never expected to have this experience in my life helping me to learn more about my 12 step program.
I ended up having two more surgeries that week, one on Wednesday and one on Friday. I remember them taking the respirator tube out of me one of those times, although the doctors told me that it wasn't possible. They never could explain why I was wheeled into the recovery room with both hands holding my throat that one time. I learned later on that holding one's throat with both hands is supposedly the international sign for choking. After one of the surgeries, when they were wheeling me back to my room, my ears had come around sooner than the rest of me and I heard the most beautiful, angelic music. I thought I'd died and gone to heaven--literally. That beautiful music was filling my ears and I felt like I was floating. It wasn't until they shifted me from the gurney to my bed that my eyes opened. There on the TV was Charlotte Church signing Christmas Hymns. That was the day I knew the angels were there watching over me, sent by all of the people in my life who were praying for me and sent by all the people I didn't know who were praying for me. It was on that day that I started to no longer fear death.
My first weekend in ICU was a nightmare. On Saturday, one of the surgeons came into my room for what I thought was a look see and dressing change. But whatever he was doing caused pain worse than what I felt in the ER when the boil was lanced. My nurse picked up my morphine button because I had dropped it. She kept pushing it for me trying to help me the only way she could. What I really wanted to do was kick or push or smack the surgeon away from me to stop him but I guess somehow I knew I couldn't. It was on this day that I came to the conclusion that I have a high pain threshold. It was that or the movies lie. You know the kind of movie I'm talking about? Where some cowboy gets shot, someone digs it out for him and he passes out from the pain?
The next day the same surgeon was back for the same reason and they gave me additional morphine. It wasn't enough. As I think back, I do not think the surgeon was changing my bandages. The nurses had been doing that several times a day every day and I didn't feel much pain at all when they did what they had to do. So I think he may have been cleaning it out. My head wasn't all that clear back then and it still is in a fog about several things that happened back then. I can only make assumptions which isn't always a good thing to do. I ended up with a fourth surgery the following Tuesday. I came out of that surgery with 5 manicotti noodle sized drains in me with sutures in between. The sutures weren't all that comfortable.
I have never seen so many different doctors in such a short period of time in my life. Of course, I saw my primary doctor every day. Then there was my surgeon and his two partners, an Infectious diseases group with I don't know how many doctors, an endocrinologist for my diabetes, and three surgical residents. Then there was the dietitian, the people from pastoral care and of course, all of the nurses and aides and even the cleaning lady. They were all so wonderful. They were my earthly angels, all of them.
Sometime during my first week in ICU, one of the nurses came up with a great idea that would save me a little bit of pain. She got something called Montgomery straps which, once put in place on either side of my incision, actually looked like the lace up part of a corset. The great thing about it was that once laced up, they kept the gauze in place and I didn't have to have surgical tape ripped off of me every time my dressing needed changing. The surgical residents, however, seemed to have a problem with them. Oh they were able to unlace them with no problem. But for some reason, none of them could lace it back up. So there I was, laying there in the bed watching what seemed like something out of an old, silent movie. I started laughing and told them I was glad surgeons didn't need to know how to lace things up because they were struggling with it too much. I had fun teasing them and I'm glad they all had a good sense of humor. Their response was to come into my room every morning at 6 am saying, "Happy Groundhog Day" referencing the movie of the same name with Bill Murray. They were three great guys, actually, and I hope the never get that attitude that many surgeons can get.
While I was in ICU, and for a while down in the regular room, I was getting IV antibiotics, three of them---Cipro, Vancomycin, and Flagel (please forgive any misspellings). Once the nurse told me about the Vancomycin, I knew I had to be really, really sick because I'd heard that is the antibiotic of last resort and quite powerful.
It was from one of the surgical residents that I got my diagnosis. He said it so fast I had to have him spell it for me. Necrotizing Fasciitis. I'd never heard of it. He seemed a little uncomfortable and I figured that was because he wasn't used to all of this and maybe was afraid he was answering questions he shouldn't be answering. Finally, he gave me the "generic" diagnosis--flesh eating disease. If I didn't know how seriously ill I was from being told about the antibiotics, I sure knew now. I eventually found out my exact diagnosis from the surgeon--Fournier's Gangrene with Necrotizing Fasciitis.
After being in ICU for two weeks, it was time for me to go to a regular room. I was scared because I knew I wouldn't get as much attention down there; but I also knew I couldn't stay in ICU forever. Again, I have to stress the wonderful care I got from the nurses and aides down in my regular room. I had another bunch of earthly angels taking care of me. They encouraged me to walk around the halls to build up my strength. The nurses and surgical residents kept telling me that I was a miracle. I did my best to accept that graciously. I didn't feel like a miracle nor did I think I deserved a miracle.
Now, after reading some of the other stories at the NF site, I understand what they meant. So many people have spent months and months in the hospital with this disease. And some have died. I am extremely humbled by this.
After a total of three weeks in the hospital, I was sent home. The orders for home care was that my incision has to be packed twice a day with gauze soaked in sterile saline solution, topped with dry gauze and the Montgomery straps laced back up. I was told this is called a wet to dry dressing. The visiting nurse wasn't going to get approval for twice daily visits, so my husband had to do the second packing since the visiting nurse came during the morning while he was at work. I had confidence in him since he had been a Navy Corpsman/Pharmacy Mate back during Viet Nam and had some medical training. I never thought how much it would impact on him emotionally. But in spite of that, he did his best and I think he did well. Three days after discharge, I saw the surgeon for my first follow up appointment. He stopped the wet to dry packing of my incision and changed it to irrigating with saline solution then covering it up.
My incision runs from just about the middle of my left hip all the down, around the flabby, hanging belly caused by having two large babies 14 months apart, and ends just above my right thigh. It is still not all the way healed. There's one little stubborn inch left at the spot where the last drain to come out was. So now I've got this nasty scar and I'm lopsided. Basically the surgeon did a modified tummy tuck. I would like to get reconstruction done and hope my insurance will cover it. Since a plastic surgeon won't do anything until I'm all healed, I'm waiting to see one. I tried once already and was basically turned down and told my insurance won't cover it. I think with the right wording and a little fight, they will. The explanation of what is and isn't covered where reconstruction is concerned is actually quite gray. Time will tell.
To top it off, I am still dealing with that bladder problem. I've had two bladder biopsies this year with another urologist and he has finally concluded that there is definitely no cancer. I didn't really think there was. I still have pain, frequency and incontinence. I am not getting a good night's sleep and haven't for a long time. All the tests I've had show that my bladder is very red and swollen. The last pathology report from my most recent biopsy, to my understanding, basically says I have chronic cystitis.
I am now headed for my third urologist, at the request of the second one. I hope he can find the answer. The sleep deprivation is getting to me. It has messed up my body's time clock. It doesn't know if it's day or night and doesn't know when to tell me to eat. My appetite is all messed up again. I quit smoking on July 9 and have gained at least 30 pounds since then because for a while, my appetite came back with a vengeance. Now, I nibble when I would have had a cigarette. I am always tired and it's beginning to scare me. I know that a major contributing factor to me getting NF was that I was running on empty which probably weakened my immune system. And I'm sure my diabetes just added to that since it was out of control. I was doing a great job keeping that under control but now I'm having a hard time. I don't know if my physical condition is affecting my numbers, or if it's what I am or am not eating or that I'm not exercising. It's hard to go take a gym class when you have to run to the bathroom every 15-20 minutes during the day.
So, that's about where I am right now. I did get guardianship of Mom. I was awarded the house. She is still in the nursing home. Her remaining stock had to be sold to pay them and she's now on Medicaid. And Medicaid is driving me nuts wanting this information and that information. They weren't happy to hear about the house. But I've been living here since 1982 and was Mom's caregiver since December 1997. Had we not been living here, she would have been in that nursing home 5 years ago. My lawyer says there is some kind of caregiver exception and that Mom's Medicaid approval will not be affected. I won't feel good about that until Medicaid tells me.
I have to admit that I feel almost embarrassed relating my experience with NF after reading some of the other stories. So many of you have had it so much worse than I could even imagine. I hope I haven't bored you and thank you for reading this to the end. This is a God awful nasty disease.