I Hate Dialysis Message Board
Introduction => Introduce Yourself => Topic started by: virrat on January 13, 2007, 10:44:15 AM
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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 us.
I 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.
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Welcome to our community. We are really glad to have you with us.
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.
I am in total agreement with this. I was discussing this with a nurse the other day. Sometimes the practitioners seem to think that if they are taking care of the technical stuff and our dialysis sessions are according to the textbook, they have done all that they are to do.
I am looking forward to hearing much from you. I appreciate that you don't see this just as an academic exercise on your part.
Bajanne/Moderator
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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.
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:welcomesign; Virrat
Fixed Welcome sign - Rerun Moderator
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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.
Wow really? I always thought if my reflux had been corrected then that would be all and I would have been able to never be afflicted by this disease! I didn't realize.
It is good to hear from someone local (I am in Ontario as well!!!!! :clap; )
I hope to hear more from a fellow Canadian!! :) :2thumbsup;
You seem like an extremely intelligent and insightful person! :thumbup;
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Welcome to IHD, I think you will make a great addition to IHD, be sure to check out the sister sites of IHD. Just look in my signature line for the links. Again welcome to IHD. And great "intro" by the way.
- Epoman
Owner/Admin
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:welcomesign;
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Hi virrat, :waving;
Welcome to IHD. I am curious how you found this site? I always wonder because we all seem to come
from many different directions and backgrounds. Thanks for sharing your story. It will be interesting to
hear more about your thesis. I have been very disappointed in the social workers and liaisons that are
supposed to help patients. If you don't have an advocate helping you, the whole process is quite
daunting, as you know firsthand.
~Karol
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Welcome Virrat. Sounds like your medical history could be a good thesis! I'm so sorry you lost your transplant. It is such a wonderful gift. I hope you are able to get another one someday. I'm trying for my second one right now. Not easy! Best of luck with your thesis and if you need any help from us, just ask.
:welcomesign;
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Welcome Virrat, good to have you aboard.
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Hey, it's great to have you here. Good luck towards your PhD/LIS!!
:beer1;
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"Welcome to IHD. I am curious how you found this site?"
To answer okarol's question, my wife found the site while she was reading the blurb on dialysis on the Wikipedia site. She is a healthcare librarian (Yep, two librarian's in love. We met at the Library of Parliament in Canada) and she lets me know when she has come across a good site. We read the T-shirts, had a good chuckle and I decided to join.
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:welcomesign; virrat
Fantastic introduction.
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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.
I love the idea - 'our never ending honeymoon'. Best wishes to you guys.
Yes, there is another private dialysis clinic - Island Dialysis; you can check that too if you want, but I was quite pleased with Total Care. Nice to hear you have Bajan connections. Of course, no one can deal with fish like Bajans. Let me know how things turn out.
BTW, the Barbados Telephone Directory (yellow and white pages) is online at www.barbadosyp.com.
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:welcomesign;
Curious from Ont. what part
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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 us
I 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.
Just re-read your intro and find that your mention of your theme to be very much in line with what my son and I are going throught. To me the new patients here in Ontario are NOT given all the choices nor all the information to make informed decisions.. are we not competent eneough to know these options ? I don't know about you but we where never informed about nocturnal dialysis My son Jessie (18) was a PRIME candidate for PD ( pushed on us) until I learnt about peritonitis and then nocturnal ( Humber River and TO general). The idea of PD went straight out the window and we are now vigourously presuing nocturnal. I think Ottawa has a unit as well.... we will be watching for your postings perhaps you can let us know how your works are progressing Richard C/O Jessie
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I did my initial stint of hemodialysis (Feb 93-May94) in southwestern Ontario (west on the 401 from T.O.). I did PD while in Ottawa from June 2001 - August 2005. The PD unit in Ottawa is excellent. All the staff was helpful. I am not sure if Dr. Page is still there since he was overdue to retire while I was there, but if he is, then you are in good hands.
I came back to southwestern Ontario to pursue a PhD and transferred to the PD unit here. The nurses, social workers and dieticians were nice, but hit and miss with the docs (more miss than hit). Due to the peritoneal membrance failing, I went back to hemo in April 2006 and have been doing fairly well since then.
I remember not being offered PD when I first went on dialysis. I was about the same age as your son. I believe their idea is that since we are young, we have excellent veins, so why not do hemo. I find that docs look at you based on your numbers and not what might suit your lifestyle. There is obvious dramatic changes that occur in the body when you do hemo the way it is done in the hospital, but PD definitely offers a more stable lifestyle. In saying that, I should also say that I have heard great things about daily nocturnal home hemo. There are probably other people in the forum who may be able to back me up on this one. The way hemo is done in the hospital is counter productive to the way the kidneys work. Unfortunately, the demand for dialysis is growing, so there is no way our publicly funded hospitals could conceive of putting us on a machine each day for a couple of hours.
I really enjoyed being on PD. It gave me a little extra freedom (I did it at work and I travelled) that is more difficult to attain while on hemo.
I hope I answered your questions.
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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
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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 noticed you didn't put a URL. Did you mean this link that you pasted for me on D&T City? http://www.nocturnaldialysis.org
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Virrat, welcome! :welcomesign; I love the topic of your thesis - talk about making lemonade out of lemons!
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Welcome virrat, I totally agree with what you said:
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.
I'm really looking forward to your posts, and your intro was great! :welcomesign;