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| This is what I call "The Hospital Haircut." The nurses washed my hair with a no rinse shampoo and left it. I did not have a brush and by the time I got one I couldn't get it through the tangled mess. I had to go to the hair salon to get out the 2 weeks of bed knots. It was bad, very bad. She had to cut to get the snarls out. I said go for it I wanted my hair short anyway, I knew I could not take care of it long. |
Ugh! This is crazy. I have been in the hospital every year that I have lived in Virginia. I am coming up on 4 years. That's 4 times in the Hospital for a week or more.
This has ended up a long post, so I have separated the events into sections.
The Symptoms
Their were clues that my body was failing. I went and looked up the symptoms for Kidney failure and almost everything I was suffering from was on the list. I called up the kidney doctor's office for an appointment, but that ended up being almost a month away, so I suffered.
One of my clues was another eye bleed. That seems to happen when my body is failing. I got myself to Dr. Vogel and had to endure a shot in my eye and the awful laser surgery. I think the laser is getting worse each time I do it. This was my third trip to the torture chair. The pain was so bad I was on the edge of crying even though I had the lens that forces my eye open. Dr Vogel was amazing and actually sang me a sweet song as he tortured me. It proved to be enough for me to get through. I am suppose to go back for a 4 weeks check up and I need it, my eye isn't doing too well, but I just can't make the hour drive to Lynchburg.
Then I was experiencing terrible pain in my belly. One of the symptoms on the list is the monthly period becoming extremely painful. I knew I was starting mine and I thought the pain was from that monthly joke. Plus peeing has become an issue with the kidney failure, so again I thought that symptom was from my kidney's.
Then the fever came. I really felt I was going to die. I have been in severe pain. I was prepared to lose a limb. I am facing kidney failure on a daily bases, but this was the first time I thought my life was over. I was so hot and cold at the same time. I couldn't control my temperature. I couldn't eat or drink. My mother heard me moaning, which I don't remember doing. She called my Doctor and of course he said to go to the E.R.
I did not want to. Most of the time it is nothing and you have to wait for hours to hear it is nothing, but my mother wanted me to go. I could barely move. She threaten me with calling an ambulance. I did not think I was that bad, so I took a shower, took an Advil to get my fever down, even though I am not suppose to because of my kidney's and waddled to the car.
The Emergency Room
I was very sick and didn't know it. I hurt all over and I could not lie down on the bed because then I could not breath. It felt excruciating. Even the simple task of taking my blood pressure with the machine hurt. I screamed at the nurse to take it off. The pressure was killing my veins. My kidney's were falling apart along with my bladder. Oh, my poor bladder. It is only meant to hold 400ml, but mine was holding 800ml. I ended up with a catheter. That was a great experience. NOT! So after hours of tests and blood taking, I end up in a back room of the ER with a blood pressure monitor, an IV line and a nice dose of morphine.
After all the test they found out I had an infection. I had another spot on the right foot and that leg was hot and swollen and red. The ER Doctor Dr, Durr said I had cellulitis in my leg and had to be admitted to the hospital. (Cellulitis is a common skin infection that happens when bacteria spread through the skin to deeper tissues. Most cases are mild and last several days to a couple of weeks. But cellulitis can sometimes progress to a more serious infection, causing severe illness that affects the whole body (sepsis) or other dangerous problems.) I had no idea anything was wrong in my right leg because it always swells with the heat of summer. It is so bad that the skin actually rips from the inside out and I have scabs on the shin of my right leg. But the Doctors were concerned with a spot on the bottom of my foot in nearly the same place as the left foot. Of course in an area that I can't see and check. It was the fever that told me something was really wrong.
It is common in the for my leg to swell in the summer causing scabs. But the infection is in my Heel!
The Hospital Stay
They admitted me to the hospital that night. You know how truly sick you are when you are grateful for the nurses care. I could not move. I could not make it to the bathroom. Those working their took care of me. They cleaned me off when I messed myself. I was so bad off that I didn't feel embarrassed being naked in front of a stranger. I knew I was getting better when I did mind them barging in when I was on the toilet.
I was bombarded with Doctor after Doctor coming into my room. I had the kidney Doctor to stabilize my kidney's, a foot Doctor to look at the spot on my right foot, the Doctor who admitted me and his assistance, who were in charge of my over all care. I had a bladder doctor because of my problem in the ER, an infectious disease Doctor because of the fever which meant infection and a surgeon. I made sure to know almost every Doctor's name and which Doctor decided on which care. It is so hard when you are sick to concentrate on those details, but I was alone. I am almost always alone and I am the one who has to tell each Doctor what the others are doing. It is nuts.
The foot Dr. looked at me and said that it was a blister and their shouldn't be any problems with the foot. The infectious Disease Dr, asked for a bone scan. I thought it was a little much since I had a bone scan with Dr. Bajwa in Dec. Well the scan came back positive. I have a bone infection in the heel of my right foot. I was shocked. A bone infection! What does that mean for me? Well, It meant 6 weeks of strong IV antibiotics. I protested.
The Doctor's were talking about me coming back to the hospital each day, which I can not stand doing. It was so hard when Bajwa said I had to do it from December through February. I just don't want to leave the house because I have terrible tummy problems, my body reacts to the trauma of getting into the car by swelling up. I can do it once a week, but not everyday. Plus the hospital furniture is so uncomfortable. The very worst is getting stuck for the IV. I am really difficult to find a vein on. The majority of nurses would have to try 2 or 3 times to get the needle in. I would go home looking like a pin cushion I had so many needle marks on me. I protested.
There had to be another option. I mention the PICC line (A PICC line is, by definition and per its acronym, a peripherally inserted central catheter. It is long, slender, small, flexible tube that is inserted into a peripheral vein, typically in the upper arm, and advanced until the catheter tip terminates in a large vein in the chest near the heart to obtain intravenous access. It is similar to other central lines as it terminates into a large vessel near the heart. However, unlike other central lines, its point of entry is from the periphery of the body the extremities. And typically the upper arm is the area of choice.) The nurses had suggested it when I was getting the IV antibiotics under Bajwa, but he had said no to that option. Now, they were seeing if my insurance would cover home nursing, they would be in charge of the IV antibiotic being administered to me.
Meanwhile, Back at Home
I was alone on this particular visit to the hospital because my poor, poor mother was and still is suffering with Shingles. (Shingles is a viral infection that causes a painful rash. Although shingles can occur anywhere on your body, it most often appears as a single stripe of blisters that wraps around either the left or the right side of your torso. Shingles is caused by the varicella-zoster virus — the same virus that causes chickenpox. After you've had chickenpox, the virus lies inactive in nerve tissue near your spinal cord and brain. Years later, the virus may reactivate as shingles as your immune system weakens.) She figured out what the pain was after the rash appeared. I was feeling Okay at this point and feeling terrible for her. She went to the Doctor and got the treatment, but the diabetes made it hard to beat and she had to get another round of meds. She was suffering from it when she convinced me to go to the ER.
On my 2 day in the hospital my Mother calls me to say that her right side was drooping. The Doctor said it was Bell's Palsy (Bell's palsy is a paralysis or weakness of the muscles on one side of your face. Damage to the facial nerve that controls muscles on one side of the face causes that side of your face to droop . The nerve damage may also affect your sense of taste and how you make tears and saliva. This condition comes on suddenly, often overnight, and usually gets better on its own within a few weeks.) brought on by the shingles. It is bad. I know Mom is suffering. She will sleep for hours in the day just to escape the pain. The bell's palsy makes it hard for Mom to talk on the phone and she loves to do that. It is getting better, but it is a slow process. I forgave Mom for not being at the hospital. I think she stresses herself out when I am in the hospital and each time she has managed to get herself sick.
The Surgery
You may be wondering why a surgeon. I still have my leg for now. I had a Groshong Catheter put in. (A Groshong® catheter is a small hollow tube that is inserted into a large vein just below the collarbone. This type of catheter may used for long-term intravenous therapy and infusions. This intravenous catheter can also be used for blood draws.) The tubing has to be placed into a large vein and so that requires an Orperating Room and a surgeon.
This surgery was one of the worst experiences of my life. And things have been on the edge of excruciating.
First I had to stay in the hospital an extra day because the operating rooms were full. I just can't stand the hospital when I am well. I am like a kid waiting to go to Disneyland, when I hear I can get out. I get very impatient. So the day of the surgery comes and it was explained to me that I would be put into a state know as Twilight sleep. I wouldn't be fully under, but I wouldn't feel anything.
I don't worry about the surgeries I have had because events are outside of my control, but this was a complete "eff up" in my opinion. The Twilight sleep did not work on me. I realize now that it only paralyed me. The whole surgery was like a nightmare scene in a horror movie. I heard and felt everything. I felt the surgeons body resting on my right side. I felt the towels put on my face, (I thought it was a bag), I felt the needle going into my chest and I heard the anesthesiologist ask if I needed more medicine in his very broken English. I couldn't answer back, not only because of the towels covering my face, but because I was unable to move. I tried desperately to tell him I needed more medicine.
I told myself I can endure this. I only have to do it once. I can endure this and it will be done. Finally they finished. I was wheeled out, but before I left they needed to take an x-ray to be sure it was in the right place. I was roughly lifted up so a plate could be put under my back. That's when I heard the tubing had been ripped out.
Enough of the drug had passed that I could speak. They asked for someone who could give permission for me to go back in the OR. I was too drugged up for my permission to work.. No one was at the hospital because it was early, but I told them to call my Dad's cell. I gave them a number. but realized I a number off. I of course had his number in my cell up in my room. The time was up. The OR were taken and I would have to wait until later that day. If I could cry I would. I was taken back to my room the surgery unsuccessful. I lay huddled in my bed, very angry and not very nice to the nurses.
My Dad said he got a call from everyone. The nurse said the device ripped out. He could not understand the anesthesiologist at all and the surgeon explained that she "didn't like the placement and thought it would leak causing problems" She used that line on me when I saw her again that afternoon to try putting it in for a second time. I knew it had ripped out, but I didn't say anything.
The second time the anesthesiologist was the same woman who had taken care of me in December. I asked for what she had done then and she said that we couldn't because the mask used would block the movement of my neck. My choice was Twilight sleep or full sleep. They wanted to know NOW. I felt pressured to make a choice and neither was very good. I can't wake from full sleep. The last full sleep surgery I vomited and had to stay the night in the hospital. Meanwhile the IV in my hand failed causing my hand to swell 3x's its size because no one caught it. Proving why I need the central line. I thought of what I had endured that morning and knew I couldn't do it again. I pictured myself screaming in the middle of the surgery. I chose full sleep.
Trying to wake from the full sleep was torturous because I didn't want to feel the pain. My whole body hurt for days after. I did not know that the slice in my neck was from the mistake. I thought it was the tip of the tubing. It was put into the center of my chest the second time. I thought she was trying to put it in my neck. I like my chest better, much easier to hide. The surgeon also put stitches into my chest to hold the central line in place and another stitch for the mistake. My chest and neck hurt beyond what I can describe. You know when you feel pain and you think it is the worst you have ever felt, well add to that pain and add some more and maybe a little more. I couldn't talk because of the what the tube in my throat during surgery had done to me and I wasn't able to make any spit for 2 days. My parents came to visit and they said my hands were so swollen it looked like I had boxing gloves on. Earlier that day. but after the surgery a nurse came in to give me the antibiotic in my new line started the thumb of my other hand for the surgery. She hooked it up, started it and I began screaming even in my drugged up state. It felt like she was putting liquid fire into my hand. She asked what was wrong. I could have killed her right then. I couldn't form words at that moment. The only thing she had done was start the meds. Why couldn't she figure out that was the problem? Finally I cried out. The IV feels like fire. She had to give me my meds. I pleaded not to be stuck again. Guess what? She used the Groshong only hours after it was put in. I felt the effect of those needle sticks for weeks after, especially the thumb one. The strip of muscle in my arm would feel pain each time I moved it. I even had to hold my arm at my waist because when I let it drop the pressure made it feel as if it would explode. I was silent about the pain. I don't like to complain.
My Dad went to get me some water, since I could not stand the hospital water due to the meds I was getting. Mom and I cried together. It was too much for me. That day had pushed me over my limit. I had to stop though because it hurt to cry. You use the muscles in your chest and I had just had that area cut into twice. I knew the full sleep would kept me in the hospital another day.
I was released the next day with all kinds of orders and medicine and Doctors appointments. I was willing to endure all of it if I could go home. I knew I was going to have to take care of myself because of my mother's illness. After 8 days in the hospital they let me go. I felt like a prisoner freed from jail.
The mark doesn't look to bad, but it feels huge. It grosses me out because it feels like something is in it. I think this is where the tub was originally going to go.I have to say up front that despite the terrible, horrible, no good, very bad surgery to get the central line. The device itself has been a dream. I am so grateful that I can sit in my recliner and go to sleep or play on the kindle and listen to music in the comfort of my own home. The medical buildings are cold and white. I do not feel comfortable in them especially with my history.
This is the Groshong or I hear everyone call it a central line. I Love It! My life is so much easier now. It ended up in my chest instead of my neck.I give myself the antibiotics. In the picture you see two tubes hanging down. One is to administer the medicine through and the other is to draw blood. I have to get up at 9 am everyday to take out the balls of medicine, so they can warm up to room temp. Then I have to start the process at 10 o'clock. It isn't important for the Rocephin that I take everyday, but a big deal is made about the Vancomycin. That antibiotic can be harsh to the system. When I was taking it with Bajwa it managed to tank my kidney's. I warned the Doctor's of that event and so they have been taking that part of the treatment slower. I take the Vanc every 3 days. I feel fatigued and under the weather when I give myself that drug, so I try to plan for it.
This is everything I use. Cloth wipes to clean my hands. Plungers full of saline to flush or clean the line of lingering medicine. I now have a blue one full of heparin for the blood line. I have alcohol wipes to wash each connect thoroughly. And the balls are my medicine. I have to keep a big bag of the supplies, that is the bag next to my ottoman. Great present from my Dad. Bet he didn't guess that it would be used for this!In this next picture is the set of tools for the treatment I give myself. I have to flush the tube before and after I put the antibiotic in. The medicine is in these amazing balloon like balls. I just hook it up to my line, undo the clamp and the pressure pushes the liquid out. It doesn't matter if it is hung up or laying on my lap. The Rocephin takes a half hour and the Vancomycin runs about two hours.
A nurse comes over once a week and takes blood out of the other tube to test my kidney function and other levels, its called a trough. I was doing what the nurses told me to do and they still had trouble getting blood out of the tube. I tried not to freak because that was one of the main reasons for putting in the central line. It turns out that the body wants to close the hole the tube is making and it will form a membrane. I now have to flush using a blue plunger with Heparin, a blood thinner, in it. Thankfully that works and the nurse can get blood easily now.
Along with the antibiotics, I have to take care of my feet. I followed up with a pediatrics, a foot doctor. I really liked him, but he doesn't take my insurance. That visit alone cost me over $200. He looked at my right foot and said that it was a blister and it would heal. We had caught it in time. Then he looked at my left foot, the one with the scab. He actually took the scab off, which hurt quite a bit, and said that this could become a problem again. The scab gets a callus that pushes the hard skin back into the flesh causing it to go bad. He said it didn't look to good. Because of that visit I have a daily foot regime. I have to spray my right foot with disinfectant and rub on a protective, thick kind of ointment. Turn around in the bed because that is the only place I can bend my knee and reach my foot. Then spray my left foot to work off the bandage. Take that off, get my new bandage ready with medicine I slather on with a tongue depressor and place it over my wound.
I still have an appointment with the bladder Doctor and the infectious disease Doctor. But I did meet with Kidney Doctor. He isn't giving me any more meds, thank goodness, but since I am in stage 4 failure I was introduce to the nurse who knows about treatment options. They mentioned doing dialysis at home. I like that idea because I was watching the dialysis patient in the waiting room and I did not want to be one of them.
I am only 38 when I write to you about this. Others my age are dealing with their teenage children They have problems and wants that I don't understand. I know there are people out there dealing with Cancer or some other awful disease. When I was sitting in the Emergency room for hours after coming home because my nurse though I had the symptoms of a blood clot in my leg and wanted me to go to the ER. I went even though I did not think that was true, but I went anyway because I might be wrong and I did not want to lose my leg when I could prevent it., I sat by myself for 4 hours and I pondered on the question. Am I brave?
I do no think it is bravery I am exhibiting. I think it is survival. Everything out of a Doctor's mouth has been bad news. Do I blame the Doctor? Some I don't believe, but in the hospital I know that everyone is working to get me better, even if that can't be done. Do I blame God? Why? I have come to realize that God is not a magical genie in lamp who will grant my every wish. He is a comforter. I do not blame Him for my sickness. The sickness is my trial. I do not have a family to teach me. I have this mess, which I am freely telling you I do not know how to use this to make me better. No, I am in survival mode and I do it for my family. I am not afraid of death. Even if it is just darkness at least it will be rest. But, I do not believe it will be darkness. I believe with all my heart that I will see my family that has passed on and most importantly I will see Jesus Christ. I will hug Him and tell Him how much I love Him. I am trying to push my death back as much as I can for my family and especially my parents, since I live with them. I know my mother would enter a deep depression. She has been depressed with me here and I don't blame her. The sickness she has is physically very painful.
So, I hear the Doctor's orders and I hear what I have to do and it doesn't matter how much I hate it. It doesn't matter how tired I am, I still do it.
That is not bravery. That is survival
