I am a firm believer that (a) our psychological needs are not adequately dealt with and (b) having information about the different aspects of our condition helps us.
Hello all;I was diagnosed with ESRF in 1992 - a day before my 20th birthday (that really sucked the feeling of immortality that I felt as a former teenager). It was the reflux (corrected when I was nine) that I had as a kid catching up me.
I am so happy that you have replied to my introduction. My wife and I have been reading your posts and saw your lovely pictures of Barbados. Her late mother was born in Barbados and we are planning a trip to visit family. My wife has promised that I will eat the best fish dishes I could ever hope to taste. I was going to contact you via email to ask about where you had your dialysis sessions, but we eventually found out that you went to Total Care. I have contacted them and I am waiting for a reply. Did you happen to check out any of the other clinics? My wife and I were married in September and we want to make this trip part of our never ending honeymoon.
Hello all;I was diagnosed with ESRF in 1992 - a day before my 20th birthday (that really sucked the feeling of immortality that I felt as a former teenager). It was the reflux (corrected when I was nine) that I had as a kid catching up me. After the ESRF diagnosis, a fistula was put in my left arm and I started hemodialysis five months after the initial diagnosis. I was on dialysis until May 2, 1994 when I received a cadaveric kidney. It worked well right from the beginning and I felt great. I was studying Russian at the time and decided to spend ten months in Belarus to improve my communication abilities. I took a suitcase of clothes and a suitcase of cyclosporine and relished the opportunity that having the transplant gave me. Every so often I checked in with a clinic that took a blood sample and gave me the results. I did not have any problems while in Belarus and, due to the lack of heat in my room and poor diet, I was able to shed the post transplant weight that I had gained.When I came back, my docs had decided to switch me from cyclosporine to neoral. Since neoral supposedly allowed for better absorption into the blood stream, I questioned whether I needed a smaller dose, i.e. better absorption equals higher potency. The docs said no. Two months later, I had a minor rejection. This was the beginning of the end for that wonderful transplant. My kidney function declined slowly over the next five years. During that time, I completed a Master’s in Library and Information Science. I also met my wife at library school. I began a job with the government soon after graduation. I began PD June 2001. Getting the catheter put in was fun. The urologist was seemingly unaware that I had transplant and pushed the camera through it during the procedure. Nine units of blood later and a week’s stay in the hospital, I had me a new appendage. I took to PD, because I enjoyed the stability it offers compared to the up and down of hemodialysis. My peritoneal membrane worked well. Unfortunately, a bout of peritonitis in the winter of 2005 started its decline. I thought I had recovered, but my membrane was slowly losing its ability to capture fluid to be drained. In April 2006, I went back on hemodialysis. I am using the permacath the doc inserted while the fistula in my right arm matures. It should be ready for needles in a few weeks. Right now, I am dealing with a carry over from my PD days. It is called encapsulating peritoneal sclerosis. It is usually caused by a bout of peritonitis and the peritoneal membrane wearing itself out because it is high functioning. I have pockets of acetic fluid in my abdomen. I recently started tamoxifen to see if that will help reduce the effects. Because of the fluid buildup, it will be difficult to get a new transplant because there is a chance the pressure from the fluid will crush the new kidney. This is what I am dealing with now and I believe some progress is being made. In the fall of 2005, I left my job with the government to pursue a doctorate in Library and Information Science. The theme that I intend to explore during my research is the flow of health information between healthcare professionals who work within dialysis units and the patients for whom they provide care. I plan to investigate each team member’s information seeking, provision and sharing behaviours as part of and independent from the team environment. Patients’ roles as providers of information to their respective healthcare teams will be considered along with how they seek information sources beyond the realm of their healthcare team and how they use this information to cope with their chronic condition. I am a firm believer that (a) our psychological needs are not adequately dealt with and (b) having information about the different aspects of our condition helps usI promise that I will not take any quotes from this forum and incorporate them into the thesis. I do believe that the forum should be mentioned as a means of sharing information. I did not join the forum to lurk; I joined because, first and foremost, I have renal failure and enjoy sharing information. I am taking time off from the PhD to rest and focus on my health.That’s about it. I am looking forward to hearing from the rest of the members.
Yup you got that right their are a lot of people on this site who are very experienced with nocturnal and home hemo dialysis.... The reason why we opted not to do PD was exactly what happened to you "peritonitis" in the US ( USRD ) as far as I can see throught thier data the case of infection are out of hand ... we read too many horror stories about PD ... besides Jess DID NOT want to have something in his gut. The boy play's high school hockey and with the peer group thing and having to do 4-6 exchanges daily ( we started counting hours ) it was just not for him. Even after Jess started hemo he was questioned by nurses as to why he was doing hemo and he's pretty well got the answer down pat and firm... perhaps you have already been to this site but just the same check out nocturnal haemodialysis ... great site from Australia .... and to think this site and clinic start came fromm wWelsely now (Humber River ) TO Richard C/O Jessie
I Hate Dialysis Message Board
I Hate Dialysis Message Board
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