Further update
I went to transplant clinic and after being examined by surgeon was advised that I could be added to transplant list. Not sure how long it will take before I am officially on the list. I had all the work up done a couple of years ago but ended up not going on the list because surgeon said I had no room and had to have kidneys removed first. I may have to have some of the tests redone. The surgeon did advise that they would have to keep a very close eye on my liver though because there is only a bit of available space in my lower right side and this may still become crowded due to my growing liver. I am hoping that I am not waiting too long as I may get knocked off again. I may also have a possible donor in my niece who has expressed an interest in helping me and has taken the contact details of the transplant co-ordinator to find out more information, so I am just leaving this in her hands. I am still suffering with dialysis hangover and take oxycodone to manage this. I am used to this now and generally just write off my dialysis day as the pay continues for about 24 hours usually, sometimes less, sometimes more.
Since my operation I am leaking fluid which has an offensive smell like sour milk. This is really getting me down as I have to shower 4-5 times a day and use sanitation. My family have told me they too can smell the odour so as you can imagine I do not want to leave the house. I can mask it for about an hour and then it becomes overpowering 9even deoderant sprays do not help). I am awaiting the results of a scan I had on Tuesday to find out if I have accumalated a pool of luid in my abdomen, and if so I will then need an operation to have this drained- I imagine this will be in and out same day. I also need the results of the scan to decide what to do about a couple of cysts which are bulging through my abdomen (making me look deformed). They also get quite painful when I am ready for fluid to be drained i.e just before dialysis day when my tummy is bloated so am presuming that I will need these draining. I will know more once I have results.
I'm feeling really fed up at the moment and my family are not really supportive. They are all so caught up in their own social lives, so I just let them get on with it and then feel sorry for myself. I am back to sleeping on the couch because I keep having flashbacks to my hallucinatory period in hospital where I thought the nurses were trying to kill me and I was very fearful for my life. These are causing me panic attacks and I can't go to sleep in the dark so as to not disturb my husband I have agreed to sleep on the couch but to be honest am hardly getting any rest because I can't switch off from these bad feelings. I was also mentally and pysically abused by my mother when I was a child (every day of my life)- e.g I wasnt allowed to go to the toilet in the middle of the night and if I got caught I got battered- my brother and sister were allowed though. Lots of memories such as this keep creeping up on me in the night and I end up crying myself to sleep most nights. I know I need a lot of psychological support but since moving dialysis centres the counsellor has got a full workload and cant fit me in yet, so I'm just coping with it.
I don't know why I have mentioned this- I think I just need to get these bad feelings out. I am crying as I type this because I cannot understand why my own mother would do such awful things to me. I have a relationship with her although this is strained (at least on my side it is). She is still wierd and sometimes says horrible things but I can choose whether I see her or not. I only really have her in my life because this is the only way I can see my dad - who I love very much. He is unfortunately controlled by her and is not allowed to visit with me unless she is with him. He knew about all the stuff what went on and chose to turn a blind eye. I cannot forgive him for this but have pushed it to the back of my mind as he has tried to kill himself twice over last couple of years and the reason he has given me is because he cannot live with knowing that he let all the horrible things happen to me. I told him that I will never ever forgive him if he kills himself as I will be left with the guilt of knowing it was because of me.
Nobody needs to respond to this- I just needed to get some of it out because I'm feeling so s**t.
Since my operation I am leaking fluid which has an offensive smell like sour milk. This is really getting me down as I have to shower 4-5 times a day and use sanitation. My family have told me they too can smell the odour so as you can imagine I do not want to leave the house. I can mask it for about an hour and then it becomes overpowering 9even deoderant sprays do not help). I am awaiting the results of a scan I had on Tuesday to find out if I have accumalated a pool of luid in my abdomen, and if so I will then need an operation to have this drained- I imagine this will be in and out same day. I also need the results of the scan to decide what to do about a couple of cysts which are bulging through my abdomen (making me look deformed). They also get quite painful when I am ready for fluid to be drained i.e just before dialysis day when my tummy is bloated so am presuming that I will need these draining. I will know more once I have results.
I'm feeling really fed up at the moment and my family are not really supportive. They are all so caught up in their own social lives, so I just let them get on with it and then feel sorry for myself. I am back to sleeping on the couch because I keep having flashbacks to my hallucinatory period in hospital where I thought the nurses were trying to kill me and I was very fearful for my life. These are causing me panic attacks and I can't go to sleep in the dark so as to not disturb my husband I have agreed to sleep on the couch but to be honest am hardly getting any rest because I can't switch off from these bad feelings. I was also mentally and pysically abused by my mother when I was a child (every day of my life)- e.g I wasnt allowed to go to the toilet in the middle of the night and if I got caught I got battered- my brother and sister were allowed though. Lots of memories such as this keep creeping up on me in the night and I end up crying myself to sleep most nights. I know I need a lot of psychological support but since moving dialysis centres the counsellor has got a full workload and cant fit me in yet, so I'm just coping with it.
I don't know why I have mentioned this- I think I just need to get these bad feelings out. I am crying as I type this because I cannot understand why my own mother would do such awful things to me. I have a relationship with her although this is strained (at least on my side it is). She is still wierd and sometimes says horrible things but I can choose whether I see her or not. I only really have her in my life because this is the only way I can see my dad - who I love very much. He is unfortunately controlled by her and is not allowed to visit with me unless she is with him. He knew about all the stuff what went on and chose to turn a blind eye. I cannot forgive him for this but have pushed it to the back of my mind as he has tried to kill himself twice over last couple of years and the reason he has given me is because he cannot live with knowing that he let all the horrible things happen to me. I told him that I will never ever forgive him if he kills himself as I will be left with the guilt of knowing it was because of me.
Nobody needs to respond to this- I just needed to get some of it out because I'm feeling so s**t.
Replies
Oh, Darlin!
Reading this breaks my heart. It makes me sad knowing that you are dealing with so many serious health issues and also pshycological problems. No child should ever be abused. Unfortunately, this is not a perfect world...and too much of it goes on everywhere every day. I pray that you will be able to receive a transplant soon. Can\'t imagine how difficult all the dialysis must be.
Feel free to use your journal to express your feelings. Holding them inside is so toxic
I am here for you, my friend.
Love, Ingrid
Julie, my mother had a heck of a time with dialysis for the entire five years. She was constantly exhausted and did nothing most of the time. She also had a nephrectomy six weeks before her transplant.
I am so sorry this life is causing you so much pain. There is a therapy called EMDR - look it up - it targets trauma...and you have had your share of trauma.
As always, thinking about you :)
Thank you Ingrid. It is a blessing to have a forum like this where Ifeel I can say pretty much anything about my life and no-one will judge me. It may be helpful for me to update my journal more with some of the cr** I went through and help me open up about my real feelings towards my mother (which are most of the time bordering on hate). My husband knows all about what she did to me and their relationship is very strained and he has no time for me venting about my mother and the flashbacks I am having as he does not think I should allow her in my life. Unfortunately I am not that person that can just cut people out, especially sinceit affected my whole childhood and although very negative and violent was my whole childhood (from 3-16). I remember being worried about what she was going to do to me. Sometimes it involved locking me out on a freezing cold night in winter becasue she \'couldn\'t stand the sight of me\'. She would not allow me back in until I had suffered from the winter elements so was often left 2-3 hours. In fact relatives used to visit and know I was outside and although they argued with my mum for allowing me back in this never happened and they just went on with their own lives. So there are a lot of family members who left me to suffer knowing full well what was going on. I don\'t think I was ever serious but I did try slicing my wrist once with sharp stones. My aunty found out about and saw the scars and still did nothing. I asked the teachers and the neighbours for help and whist they all empathised they all stayed out of it and turned a blind eye. She would scream and shout at me every morning for not getting everyone\'s breakfast ready on time (this included for my brother and sistern). Then I had to help her with her makeup and hair, which then left me no time to even do my most basic hygeine. She thrived on this and would always call me \'dirty\' name like shit house and just generally belittled me every time she saw me. I remember being battered because my period started. She refused to buy me any kind of sanitation and said I was filthy so I had to cope with buying my own using dinner money or borrowing from other girls at school. She refused to acknowledge this and I had to keep my menstrual cycle hidden from her even though it made me really sick. I would still get up at 6.00 and do all my chores to make everone else\'s lives easier and had to hide my pain and sickness. Sometimes because she felt like it she would tip all the clothese that needed ironing over the floor when we were all in bed and then come and drag me out using my hair and I would have to stay up until 3-4 in the morning doing all the ironing whilst she went back to bed. I could go on forever and believe it or not it does make me feel so much better knowing I have told someone so I hope you are happy to keep listening. Thanks again
Jenny I will look it up- anything that may helpwould be a godsend at this moment as I feel as though I am slipping back into depression. I did manage to reduce my antidepressants to 10mg a day but now feel that I may need to consider increasing this as I am struggling to switch off from the night terrors. Thank you for listening x
dear Julie, how sad this all is. First of all you should not be sleeping on the sofa. You are ill and need to be comfortable and looked after. My heart goes out to you. I am so sorry also to hear of your childhood. Why was there no-one to help you. Poor little girl. I am always here for you. God bless you, Nita x
Nita- Thank you so much- your words of comfort make such a difference to me, especially at the moment when I am feeling \'down\'. I don\'t know why no-one helped me. Even now 30+ years on some of my relatives bring it up at get togethers and ask my mum why she did what she did. She then starts crying for sympathy and they all gather around her trying to console her. At this point I get up and walk out amd make my way home as I have no intention of discussing any of this with people who were not there for me- I see them as bad as the perpetrator most of the time.I made a real concious decision that when I had children I would be the complete opposite and I have spent my time with my children concentrating on making every day of their lives happy, and I know I have succeeded in this, so at least I have not cntinued with the cycle of abuse! Thanks again Julie x
I\'m ready to listen anytime so just go ahead and vent when ever you want. I had to laugh about your nurse trying to kill you. When I was in ICU the first seven weeks in 06 I had fantastic nurses I am told. My niece is an RN so she knows one when she sees one. This particular one \"Vince\" continually tried to kill me. I \"saw\" him kill others. You see vince was the captain of a luxury yacht belonging to a multi-millionaire who owned a beautiful island in the tropics somewhere. I was one of several stewards/servers on this yacht. There were all kinds of illegal things going on on this yacht. They were smuggling women onto this island for the millionaire and his friends. One of my co-workers told Vince that she knew what was going on and that she would report him when we got to the next port. I \"saw\" Vince grab her and slice her throat and dump her in the fish \"hatch\" they have to keep the fish fresh, except no one was doing any fishing. After that incident I was afraid of Vince. When he would come and give me an injection or to check on my moniter leads or drips I just knew that he was there to do me in and no one would know any better. They had to keep me sedated for 12 hrs. at a time as I was raging when I came to. They would bring me out of it every 12 hours to see if I had improved. NOT! The girl he killed had a british accent and was a pretty, petite blonde. About 8 months after I was released I went back to the hospital and went to ICU to surprise Vince. And surprised he was. All he could say to the others there was \"this was the patient who thought I was killing her\".(My niece had called him and told him why I acted like that when she found out). When I was there I asked if there was a nurse at that time who was petite, blonde and british. He exclaimed \"Yes, you remember her?\" \"Of course I do, Vince, I watched you slit her throat\". We laugh now but many people do not understand what meds can do to you. The next year I had a partial nephrectomy at the same hospital. Same thing happened. I dialed everyone in my mobile phone begging them to come and get me as they were trying to kill me. I mean I made calls all over the United States! I \"saw\" and \"heard\" nurses go into a room and kill patients. Sometimes with meds, other times with pilows. As usual I \"saw\" the dead bodies being removed from the floor by the nurses. The payoff came when I \"saw\" my nurse with a gasoline can in one hand and those sparklers you use on the 4th of July here heading towards my room. I called Atlanta, GA
(pretty big city) 911 and told them quickly what was going on. They asked what room I was in and I had to ask the nurse before I could answer! Long story short, they responded, SWAT team and all. It didn\'t take long for them to realize what was going on. The hospital head of security came to my room. Does anyone remember that film from years ago - King Kong??? That was the head of security. He was a huge black man, about 6\'4\", shoulders from hell and a demeaner (though calm) that had you listening to what he was saying to you. He asked me to give up my cell phone until discharge and that he personally would check on me a couple of times during the night which he did. I remember well as I was afraid to sleep. He said he would come in the next day even though he was off and he did so. God, he was huge. I willingly gave him my phone and signed the papers for it to be secured.The hospital called my daughter and the next night she drove to Atlanta to spend the night with me. I\'ll save that night for another time.It is now in my permanent records at that hospital that I am to surrender my phone at admission! Julie, I can sympathize with you. It\'s a horrible fear to go through. At least now you know you are not the only one. It\'s a good thing I was on a ventilator the whole 7 weeks when Vince was trying to kill me and couldn\'t use a phone!
I hope your family by now has come around and is more supportive of you.
Unfortunately, this is a time when you know who your friends are and exactly where you stand with your family. I\'ve always had the support of mine. I know someone else who has issues with both of her parents but particularly her Mother. They\'ve done terrible things to her too. Treated her really badly. She keeps trying to make amends for nothing she has done and they want no part of her. It\'s sad but she is truly better off without them. You\'ll never get an apology from your Mother I fear as most probably she doesn\'t think she\'s done anything wrong. Julie, concentrate on yourself for now. You are the priority at the moment. Work for the day that you can be independent and get along without them, even your husband if he\'s the same as he was. I\'d like to think that kiss meant something but I\'m not so sure. What is the latest news as far as test results? What about your niece - is she a match? Perhaps you could open a big bag of charcoal - just slit it from end to end . It absorbs odors really well. It sounds as though you may have an infection in those fluids that are building up. Have the docs been able to do anything about it? I definitely understand you having a pity party for yourself. You deserve to. But remember you have some devoted friends here for you. You can cry on our shoulders. Much love, Andrea