Member: "Epoman" - Admin/Owner. Here's my story.

I will be writing my introduction in sections as it will be a long story. The dates that are shown are not when the situation happened rather when I wrote that particular part of the story. Enjoy.

(08/13/05)
I have been on dialysis for over 11 years as of this writing. Why my kidneys failed is a mystery, my kidneys just shrunk. I was 21 years old at the time. The doctors told me I most likely needed dialysis years ago, since my labs were so high. The doctors told me that my body was very strong and it just kept adapting. My only symptoms were that for about a year before I finally went to the hospital I would vomit every morning and would not be able to eat until the afternoon (I thought maybe I had an ulcer), plus I would be very lazy or tired all the time. The final straw that made me really worry was that I was at work and I almost passed out. Later the doctors would tell me that was my body about to go into a coma, and that they were really surprised that I drove myself to the hospital. On my very first Dialysis (at the hospital) I passed out a few times, my body was in shock. The next morning I had woken up and felt something I had forgotten what it felt like.... I was hungry.

(08/23/05)
I then was sent home a day or so later and was told which center I would be going to. It was in the city next to mine. So I went through what most people in our situation go through. I started going to my new center and I had an appointment to see the surgeon to discuss access options and I was not looking forward to that. After a few weeks I got my appointment. The surgeon and I discussed my options and he explained everything. I decided on a fistula if it was possible he told me he wouldn't know until he got inside. Luckily he was able to make a fistula with my veins. At the time they did not do upper arm fistulas so my only option was a lower arm fistula. I choose my right arm since I am left handed. My arm of course was very sore I was in a lot of pain. But the pain meds helped a lot. I was not admitted for the surgery it was out-patient surgery. So I am back at my center still using my chest access and exercising my arm by squeezing a ball hoping to get my fistula big enough so they can use it. After several weeks my fistula was not getting big it was a little bit bigger but not much. But we had to try so the nurse tried to use it and she infiltrated it, It was just too small. So after failed attempts or if it did work I got low blood flows. The doctor wanted to put a graft in until the fistula matures. So I went for the graft but in my case the surgeon put in half a graft and connected it to my fistula. So I had a working fistula and a graft.

(08/30/05)
So we started to use my graft and I it only clotted once and that was If I remember correctly within the first year. After I clotted they did angioplasty at the site where it connects to my fistula so I would be less likely to clot in the future. So as the next couple of years passed I had no problem with the graft and dialysis was going OK with the exception of I would get these "Sickness Spells" as I dubbed them. They were moments of time where I would feel really sick to my stomach and they would last anywhere from a few minutes to half an hour. It would be years later when I found out it was caused by my parathyroids and my PTH level of 3,000+ which is an astronomical number considering a normal range is 0.42 - 5.00 So as you can see my PTH was way above normal. But I'll get to that later in my story. For now back to the beginning. So as the years went by my fistula grew and also the angioplasty they had done to me caused a aneurysm at the site. Since I only had half a graft my options of puncture sites was small so eventually I started to use the fistula for the arterial line and the graft for the venous line. Any by doing so helped increase the size of my fistula greatly. It also increased the size of my aneurysm, but luckily it to this day it has caused me no harm except a bit of pressure and pain sometimes. It is getting bigger as the years go by so I may have to deal with it someday. And by deal with it I mean some kind of surgery. Well the day finally came when my graft clotted a second time. which was about 4 years after the graft clotted the first time. Not bad at all considering some people with grafts clot many times a year. Since we were already using my fistula and graft in combination I made the decision to instead of getting de-clotted to just go ahead and use my fistula for both lines. It was a smooth transition since I had the fistula nice and big by now.

(09/25/05)
So I was using my fistula and everything is going well. Then one day I get the idea "Hey I wonder what it is like to stick myself?" I had seen someone else doing it (I think I cannot remember if someone at my 1st or 2nd center cannulated themselves. But anyway I told the tech let me try it and I did it the first time and it slide right in no pain or anything. It was great the fear of a nurse or tech hurting me or "blowing" my arm was gone. I still to this day stick myself and I have not let anyone else do it but me. It's funny how some people are amazed or shocked when they see how I stick myself. If they only got over their fear they would do it themselves every time. When I stick myself I control everything, if it starts to hurt I stop. I know when I'm in too deep or not deep enough. I hope I am always able to stick myself.

So as the years pass about 5, the unthinkable happens. One day my wife, my son and I were at a swap meet and I walked over to pay the lady for the items I was buying and when I walked back I took a big step over some items and I slipped and my legs literally twisted and I heard and felt a loud "POP" I knew what happen I was so scared I didn't want anyone calling an ambulance. People asked if I needed help. Security came over and I asked them if my wife could bring the car into the swap meet area and I can get in and drive myself to the ER. Me being my usual self I was worried about the ambulance bill I might get since I was 15 miles from my hospital I was worried they might not cover it. As you can see I wasn't thinking straight. So my wife went to get the car and when she came a couple of guys helped me get into the backseat of my car so I can go to ER. The pain had really not set in yet and I was still in shock hoping and praying it wasn't a broken hip. Don't get me wrong I felt pain but the real pain was when I got to the hospital. It was a long drive to the hospital it was only about 12-15 miles but boy it seem like a long drive with so many terrible thoughts going through my head. Every little bump in the road hurt me, my wife tried to drive carefully but she also wanted to get me there as fast as possible. I did however tell her to stay within the speed limits. During the drive over my wife called my mom and my dad to have them meet us at the hospital. It amazes me the strength my wife has with all the things I have put her though she is always strong I think she stays strong for me to make me be brave. When we finally got to the hospital we drove up the ambulance bay and my wife ran in to grab a nurse. When the nurse asked me could I get out I told her no way it hurts too much. The pain had really set in my now. I would say at least 40 minutes had passed from the time I heard the "Pop" to the time we reached the ambulance bay. I was crying I was in so much pain and I was sitting in a position that any little movement it would hurt 10 times worse. The nurse went to get a gurney and some others to help me get out of the car. We were are trying to figure out the least painful way to get me out of the backseat. They slid the gurney under me and it was the worst pain I had ever felt. Or so I thought but I'll get to that a little latter in the story. The pain felt like someone was stabbing the inside of my bone with a knife.

(10/31/05)
OK so I now I am in the E.R. and the doctors take X rays and yeah I have a broken hip and the pain medicines they are giving helps a little and they tell me they will need to put metals pins inside to hold the hip together while it heals. So yet another surgery will have to be inflicted upon me. So after the surgery they put me in my room and they told me I would be starting physical therapy tomorrow I told them are they p*cking kidding me? are you nuts? they said no you will be discharged the next day. What? I told them. Man you have to love HMO's. so the next day I was in physical therapy and they wanted me to walk on my good leg and my hip that I had just broke and had 3 pins put in less than 24 hours ago while holding on to rails. The pain was just too great and I couldn't do it. They kept insisting that I do it but I told them no I can't it hurts too much and I am going back to my room. They thought I just had a low tolerance of pain I guess. I forget if it was the next day or the same day after physical therapy that they discharged me and I went home. I went home in crutches and they would a day or two latter send a wheelchair to my house. Well about a week passes and I am in a lot less pain and I decide to get out of my wheel chair and sit in my recliner well the unthinkable happens as I am twisting to get into my recliner my wife and I hear a loud "POP" my wife and I looked at each other and I just fell back into the recliner and screamed "NOOOOOOOOOO" I knew what had happened and I started to cry while my wife dialed 911, I had now broken my OTHER hip.

(12/11/05)
So there I sit waiting for the paramedics to arrive totally in a state of shock with all these thoughts going through my head. The ambulance got to my house fast I would say in under a few minutes. I told them the situation and they put me on a gurney and put me in the ambulance and off we went. My wife called my father and mother so they could meet us at the hospital, My wife took our car and I went in the ambulance by myself. The pain had really not set in yet. On the way to the hospital and by the time we got there the pain had really set in and I was in the most excruciating pain I have ever felt. I was begging for more pain medicine in fact my wife and mother both asked the doctor to give me more pain meds but the doctor said oh he must have a low tolerance of pain. I could not believe the son of a bitch said that, here I am with 2 broken hips and he thinks I have a low tolerance of pain? the pain was much more severe than when I broke my other hip it felt as though someone was sticking a knife into my bone it was horrendous, plus on top of it all my other hip hurt too. Remember I had just broke my other hip a week before. The doctor said after many pleas that he could not give me any more pain medicine because I was on so much already that if he gave me any more my heart would stop. I didn't care though I was in so much pain. I wish they would have just let me die. So now almost 3 hours has past since I broke the hip and I am still waiting to be taken to surgery then 4, then 5, it was almost 7 hours before they finally wheeled me into surgery to pins put in my other hip. I was surprised after I saw the incision they made on my first leg to put pins in, the incision was only about an inch long. So after I woke up from my surgery later in recovery the doctor told my wife that he was sorry that once they saw my hip from the inside they had seen that I had shattered it so bad and that I had bone fragments stabbing into the nerves he now understood how much pain I was really in. Now what's going to happen to me? Now I have two broken hips. But I had already knew that was going to happen to me. In fact a few days after I went home after I broke my first hip I had my wife take me to the ER because I had really bad pain in my hip more so than normal and the doctor said it was just bleeding inside at the pin site and that was normal. I had told the doctor I know I'm going to brake my other hip and he just laughed and said that would not happen. Well I got the last laugh, I was right (rolls eyes).

(02/06/06)
So here I was with two broken hips and there's nothing they can do for me. I'm laying in the hospital bed thinking OK what's going to happen to me now. I am in a lot of pain what's the next step. Well the doctors tell me you can go home now so after only 2 days in the hospital they are sending me home. The doctor had shipped to my home an electric hospital bed, a commode, a lift (so my wife could help me transfer form the bed to my wheelchair). They sent all that stuff to my house but they could not send a shower bench as the insurance would not cover it if you can believe that. We live in a apartment and so there it was a hospital bed in my living room. My dad had moved our love seat into my sons room. Man I was really depressed. Plus now my wife would need to take family leave from her job since I could not even wipe my own butt, I needed 24/7 care. But on top of all this I still needed to go to dialysis three times a week. I had a wheelchair accessible taxi/van take me and of course my insurance would not cover it so I had to pay $10 each way just to get to dialysis. Plus when I got to dialysis I was in so much pain I could not transfer to the reclining dialysis chairs so I just stayed in my wheelchair and got dialysised. It was terrible. So after several sessions of that I got tired of that and asked my wife to call the insurance and see if they would cover a reclining wheelchair and believe it or not they actually sent me one. So now dialysis was not so bad at least when my pressure dropped I could recline back. So I would go see the doctor once a week to see how my hips were healing they took x rays and every week the doctor would show me the x rays and say well there's not much improvement. Finally after several weeks of my life consisting just of going to dialysis and coming back home and getting in my home hospital bed and not getting out of that bed until it was time to go to dialysis again, I went to see the doctor and again like always he took x rays and this time out of his mouth came the words that I knew all along. He said I'm sorry but there has been no improvement and I don't think you'll ever walk again.

(07/07/06)
Well So now here I am on dialysis and now I can't walk, I am in so much pain due to my hips still really being sore. and I still have the hospital bed in my living room. So now I need to face the truth that I NEED to have my parathyroids removed bottom line, before my other bones break. My life for a couple of months consisted of laying in my hospital bed in my living room all day and night until it was time to go to dialysis. That's all I did, well that and watch TV and be on the Internet. I had not had a real bath or shower for a while and I was going crazy. Christmas was really a sad time, we had a small little tree because we had this huge hospital bed in our living room. I laid in the bed while my son opened his presents, I cried I thought this is it, this is what my life has become. Just when I think life couldn't get any worse. Well it did I started the new year off going to have my parathyroids removed and wouldn't you know like all things in my life nothing comes easy. I went through the surgery and of course they said they only were able to find a couple of the paras, but they did find a LUMP on my thyroid, and they removed half of my thyroid. Oh great, they told me they sent it off to be tested. My throat was sore for a few days. But the messed up thing is my PTH level never dropped, so the surgery was in vain. But wait I'm getting to the good part of the story. So here I am again a couple of weeks after my surgery laying yet again in my hospital bed in my home, and I get a phone call from the doctor herself. oh uh that's strange why is she calling me herself? She was calling to tell me to make an appointment to see her as soon as possible. Oh shit, so I freak out and ask her why? She says she can't discuss it over the phone, after several attempts of me pleading with her to tell me, she still said no, so I finally gave her an ultimatum, either you tell me now or I will get my gun and blow my p*cking head off right now. Well that worked and she told me that they checked the lump and it was indeed cancer, thyroid cancer to be exact. I screamed at her "what the p*ck are you telling me, I have cancer?" she said yes. But she said there were 3 kinds of thyroid cancer and I got the good kind, the good kind? yeah that's what I thought. She explained that they removed the lump but in case it spread they wanted to go back in and remove the remaining part of my thyroid and well they were there, look for the remaining parathyroids. I hung up the phone and my wife and I cried together, well after I screamed and shouted at GOD for a while. The usual "why me?", "what did I do to deserve this?" you know the usual things people say. So a week or so later I had an appointment with the surgeon who cut me open the first time. To discuss my options. He basically said I was lucky and they think it won't be a problem and he recommend since he had to go back in anyway that he would remove the remaining part of my thyroid. He assured me that a person could simply take a pill to replace thyroid function, well he never said it would be a battle finding the correct dosage, but I'll get to that later. He also said I would not have to do chemo unless I really wanted to play it safe. He thought it wasn't necessary. So obviously I was not going to argue with him. That news sort of relieved me. He also said take your time and think about what you want to do. He claimed I had plenty of time to make my decision, months in fact. Well I did take my sweet ass time making a decision, I spent several months debating if I should let them go back in and cut me open again, and run the risk of him cutting my vocal cords. He had also told me in the visit with him, that the risk to the vocal cords increases dramatically with the second surgery. I told him I would die if I could not tell my son I love him.

(12/17/06)

So months had passed, 2 and a half years to be exact, yeah, yeah I know 2 and half years later? Well the doctor told me I had time to think about going back in to remove the remaining thyroid since I had the "good" kind of cancer and he believed he got it all. My hips were still broken and not healing, the pain got less and less as time went on, however if I move a certain way or stand for to long, I am reminded by the pain that my hips are still indeed broken. But I lived in constant fear of breaking another bone, I mean what if I broke my shoulder? I would be an invalid. So I thought long and hard about it, since my PTH levels were still outragously high, in the 3,000+ range, as the first operation was a failure. Well it was a failure in the sense of correcting my PTH levels but it was a good thing I guess because they found cancer before it had a chance to spread. So I go in for the 2nd surgery this time to remove the remaining part of my thyroid as a precaution just in case it did spread, because the other half was removed due to cancer and to find those parathyroids that are hiding in my neck somewhere, I will be having the same surgeon and I know the risks and I told him, I have to be able to tell my son I love him. Please do your best to protect my vocal cords, but at the same time don't bring me out of the surgery until you find those para-thyroids. From what my wife tells me, I was in surgery for hours. The finally the doctor came out and told my wife that they removed two more parathyriods, he told her one was enlarged and one was enormous. he told her he believed, it was a successful surgery and that my PTH level was dropping significantly, he didn't go into to much detail. So later I awake in my hospital bed and I couldn't talk my voice was very horse and only as loud as a whisper. I had a drain tube sticking out of my neck to help stop the swelling. I was in some pain, but the pain meds helped. The drain tude caused most of my discomfort. I had it in for 2 days and I felt much better after it was taken out, in fact after it was taken out my pain level was very low. But the surgeon was right, it was a success. My PTH dropped to under a 100. Imagine from 3,000+ down to 100. But my calcium dropped really low like in the 6's because they said my bones were sucking all the calicum up after years of having a high PTH, he said my bones were thirsty. So they wouldn't release me from the hospital until I had a stable calcium level. I was in the hospital about a week. And during that time it was very hard to speak and I was taking a ton of calcium pills to help raise my calcium to a safe level. I wanted to leave so bad, but they wouldn't let me unless I signed a "AMA" form which stands for "Against Medical Advice". And I didn't want to do that, so I just toughed it out. While I was still in the hospital the surgeon came to see me and explained the surgery to me and he said it was a success and that one of my parathyroids was the size of a golf ball, remember parathyroids should be the size of a grain of rice. He said he called in a cardiologist because he had to dig in my chest down from my neck to search for the parathyroid. He brought the heart doctor in as a precaution just in case something went wrong. He told me he did not want to "close" me up until he had my PTH down. I was gratefull for that, but I still was very horse in my voice and he just said it "should" get better. When my Calcium finally got to like a safe level, it was low still but they finally gave in and released me, I think they were sick of me by now, they knew I just wanted to go home. I was literally on 25-30 calcium pills a day and Vitamin D as well, along with my other usual meds. And now for the first time I am on Thyroid replacement pills due to the fact I now have no more thyroid fuction. All those pills were making my stomach so upset. What was great though was that my phosphorus had never been better it was actually low for the first time ever. I was able to eat so many high phosphorus foods, not like I didn't in the past already but now I could do it and not worry about my phosphorus levels. Real fast before I move on with this story, I want to mention one of the nights I had in the hospital, I think it was like the 2 day after surgery. I still could not speak louder than a whisper, and my wife had left and I was in a private room. I was in such pain due to the drain tube so I could not move. I kept hitting the "call" button and they ignored it, I needed my pain medicine. I was long over due for it. And a nurse was no where to be found. I felt so helpless I could not get up and find a nurse as my wheelchair was way out of reach and besides it hurt so much I couldn't even sit up if I wanted to. The rooms lights were off and I was totally in the dark. I sat there crying in pain, waiting and doing what ever I could to make any noise to get their attention to come help me. I threw stuff from my bed tray at the door (it was closed) But no one came. It was a time in my life I will never forget feeling so alone and helpless. Finally hours later they came in to give me my pain medicine. Let's just say I let the nurse have it, well the best I could with my voice being no louder than an ant's fart. Now back to the story so now I am home and a few weeks have passed and my voice has gotten better but it is still very hard to speak and the funny thing is that I was only able to speak if I turned my head to the "right". But at least I was able to tell my wife and son I loved them. So we waited a few more weeks and finally I made an appointment to visit an "ear, nose and throat" doctor so he can give me an answer is one of my cords cut? Will I ever be able to speak normal again?

Stay tuned the story is just getting started.

Too be continued. I'm busy working on the site.