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reddvl31
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1#
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Rank:none
Score:159
Posts:159
Registered:24/10/2002
Time spent: 0 hours
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(Date Posted:28/07/2007 08:00:53)
Hi Tracey,
I am surprised that your doctors are telling you to do the autotransplant. There are a couple of people of this website that have had it done, and it has not worked for them. So far, I only know of 1 person this worked for, and it was for a limited amount of time. Back when I was first diagnosed over 10 years ago, they wanted to do the autotransplant. That was really all they had at the time to try and alleviate the LPHS. I chose not to have it done because I did some research on the internet and the success rate for autotransplant is very low. Not to mention all of the complications. I have heard of way too many people who move their kidney only to have it completely removed because of complications. There are some great articles on the internet about the autotransplant. Try to do a google search. I hope you can find something that works for you. Good luck.
Jori
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stmll
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2#
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Registered:09/04/2007
Time spent: 0 hours
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(Date Posted:01/08/2007 05:53:28)
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Hi Jori
I met with the urologist who would be doing the Auto transplant, people all over Canada come too see him, and London Universty Hospital is known as a great hospital one of the best in Canada, Dr.Luke(The Urolgist) was just wonderful, Another huge advancement is how they remove the kidney. They no longer remove any ribs and are able to remove your kidney orthascopicly with a hand assist through the incision in your abdomen. There is a very intense screening before they perfom this, they have to make sure #1 is that there is nothing else wrong with the kidney and #2 is they have to make sure that your other Kidney is functioninf properly as a risk in the surgery is you could lose the kidney,and they make sure that the other kidney is functiong properly s29 th I go for ao you will not end up on Dialysis.
Dr.Luke has performed 5 AT, 3 are living pain free lives, 1 their kidney clotted and resulted with losing the kidney, but she is pain free and living just fine with 1 kidney and no pain, and to be honest I can not remember what happened to the 5th.
On August 28 & 29th I go for a Cat-scan and then on then on the 29th I have a Renogram with a GFR, to test the kidney function, I pray that my right Kidney is fine and can handle the load if I happen to lose the Kidney in the operation. I then go back on Sept 6th to find out the results and see is if I can have the surgry, If I can I then go see a Pshychatrist(SP) to se if I can handle all of this, if so I will probably booked @ November.
I know everyone has their own opions on this AT, I know it is not a permenant fix, I also know that it may not work, but 4 out of 5 is not bad odds, I have also been in contact with 3 other ppl that have had this AT, and they are now living pain free lives.
I would just about do anything to be out of pain, I pretty much live in my recliner, i have no quality of life anymore, I have 3 children, I have 1 life and if I can try something that might work, I have to go for it, maybe it will work for 5 years, and maybe in 5 yrs they will have found out something on LPHS, maybe some new treatment,and I will try that if it comes back, but anytime that I can get that I can spend with my family and be me again,pain free even if it is for a year,it will be worth it to me, I miss so much the things I use too do, I know it is a long recovery, but it shall pass, and hopefuly with any luck it will work for me and I can get some of my life back and LIVE!!!
I hope your doing well, and being pain free as possible, I appreciate your post and concern, I think we really need to help each other as there are not many of us, and we need to share ideas, and info as much as we can, I will keep you posted on my tests and what the Dr, says..
Take Care
Tracey |
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reddvl31
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3#
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Rank:none
Score:159
Posts:159
Registered:24/10/2002
Time spent: 0 hours
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(Date Posted:01/08/2007 08:28:38)
Tracey,
I hope you don't think that I was being negative on you because you want the autotransplant....that's not the case at all. I just want you to be fully prepared for what is about to happen to you. Only you can make that choice as to what is best for you....don't ever let anyone else tell you differently. If you feel that the AT would be the best move for you, then go and do it. I just wonder why there is a big discrepancy between what your doctor has done, and what is being done in the U.S.A. Who knows....maybe he's just the best doctor in the world!!
You are right...we need to share all of our treatments and ideas about LPHS. No one else is going to do that for us....there isn't any ongoing research about LPHS..just a paper here and there. So please keep up informed on how you are doing and what you have decided. If you do go through with it....I hope it works for you. None of us deserve what has happened to us. And it is devestating. We all know that first hand.
Good luck to you...I will keep my fingers (and toes!!) crossed for you!!
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stmll
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4#
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Registered:09/04/2007
Time spent: 0 hours
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(Date Posted:01/08/2007 17:49:05)
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Hi Jori,
Oh No, not at all, I was not offended in any way!!, I absolutely agree with you, that we need to share everything, good or bad, as there is not alot of info out there for us, you know I had done some research on AT, before I went to the London Univerity Hospital, and i remember saying to my husband.."ohhh I don't know about that" I have been very very lucky to get into that hospital ,in Canada,it is renowend for being the BEST, best at research,care, everything, it is about 5 hrs from us but we don't mind, because it is that good, And like I said after his screening he has only had 5 candidates that are qualified too do this AT, and 4 out of 5, maybe even 5 out of 5, because I can't remember what the 5th was like, are pretty good odds, I was talking with someone else from the states, who has has a AT, and the diffrence in the surgery was they add a damn around the kidney to prevent nerve reattatchment, I asked the Dr. about this and he said" there is not enough research out there for me too do it, and I belive putting a foreign substance in your body would be worse" and this guy had his AT in the last year, so I am not sure why the diffrence between countries, like I said to my hubby, I wonder who is further in their research my Dr. or the states DR. I will find out on Sept 6th after he gets the test results from my kidneys too see if I am able too do this, and I will definetly keep you posted, you know I have seen alot of Dr.s, as I am sure you have through this awful disease and I just didn't "feel good" after I left, but after talking with and having tests done in London, we both knew that these were the Dr.s for me, The Dr.s names are Dr.F.Rehman-Nephrologist,and Dr.P.Luke-urologist and the hospital's name is London Health Sciences Centre University Hospital, London, Ontario, I don't know if you google that, you will get some info on them and the hospital, I hope your doing good, and I will talk with you soon.
Take Care
Tracey |
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Kim Hughes
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5#
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Rank:none
Score:177
Posts:177
Registered:01/06/2003
Time spent: 0 hours
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(Date Posted:05/08/2007 04:38:27)
Reply to : stmll
Hi All,Well I just got back from London Universtiy Hospital and I went and saw 2 Nephrologist in the chronic Kidney Ward and it was sooo nice to be validated, they both agreed I have LPHS, so this is 3 Dr.s now that have given me this diagnoisis, this should be enough for my family gp that gives me my meds...sigh!!!, anyway he took 18 vials of blood, just to make sure nothing else was going on with my Kidney and I have this kinda of rash looks more like blood under the surface of my skin really bad on my back and a little on my legs, he thinks this might be the first st
This makes me abosolutely sick to my stomach when I read this. I FULLY understand the desperation of someone seeking an autotransplant. Tracey, I had the auto back in 1990 and it was a total loss. I didn't get any relief at all. You seem like you've made up your mind so I won't try and change it, but please consider this:
A urologist shouldn't even be considered as the surgeon to do this surgery, and one who has only done 5 is a novice at best. You need someone who has done 30, 40 -- or more -- transplants. There are plenty of good transplant surgeons in Canada which would be a much better choice of surgeon. Yes, urologists are surgeons but they operate on bladders, not kidneys. The closest they get to kidney surgery is removing kidney stones. And they remove kidneys, too. That's fine but that's the easy part. You need someone who is experienced with reattaching a kidney and getting it working again. That's the hard part! And that's why I think you need to consult a transplant surgeon. If the transplant surgeon tells you no, then go to another transplant surgeon. If you get a second no, then you need to stop and take a hard look at what you're doing. If you're still wanting the auto then keep going until you find a transplant surgeon to do this. I can't believe any urologist would even consider this. They are making you a gueanie pig.
You mention you've seen three doctors who say you have LPHS. May I ask, how were you diagnosed? It can't be done with a blood test. I only ask because you indicated you may have lupus.
Another thing you should consider is how they will be shortening the ureter. Mine was cut off at the bladder, left attached to the kidney, cut, then reattached to my bladder. What this did is "cut away" the valve that's at my bladder that prevents back flux of urine. And since the ureter was left attached to the kidney, shortened to about 2 inches, I have a rather large (by comparison) ureter emptying into my bladder. (The ureter gets narrower the closer it gets to your bladder.) The good side of this, according to my urologist, is I'll never have a problem passing a kidney stone on that side. The bad part is, if I sleep on my left side (the side of the transplant) I have a rather large ureter that allows urine to flow freely into my kidney -- remember, they cut off the valve that prevented backflow and the ureter is only 2 inches. So, now I have chronic kidney infections that are hard to eradicate.
"I would just about sell my soul" is what you wrote. Girlfriend, I hate to be so harsh but I fear for you. Please think about what I've said. Five AT procedures is nothing. I'd be asking him how long has it been since his patients had the AT. You're thinking you're getting a chance at 5 years of pain-free existence. His patients may only be at the 6-month or 1-year time frame and if that's the case his patients haven't even made it past the point of reinervation. He may not have the 80% success rate he claims.
This is major surgery, and I mean MAJOR. Please, please, please, slow down and consult someone in Canada who has treated more than 5 patients. You are risking your life with this surgery. You have less than 1 in a million chance of developing LPHS. This surgeon has a 1 in 5 failure rate -- if this doctor is being honest with you, and you really have no way of knowing if he is. I dearly love my nephrologist and when he recommeded the auto transplant I went for it. I was told it had a 100% success rate. Three years later I found out that I was only the 14th person in the WORLD to undergo this procedure and there had been failures, something that wasn't shared with me. I didn't have all the facts when I made the decision back in 1990, but that's one advantage you have. A lot more has been written on the AT. My nephrologist, whom I still love, has treated over 80 patients with LPHS and now is dead set AGAINST doing the auto. Almost every doctor who has been involved with more than a few autotransplants is now dead-set against it.
Please don't let your desperation lead you into something you'll regret. You mention tests at the end of the month, please use the time until then to educate yourself.
I truly want the best for you!
Kim
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stmll
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6#
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Registered:09/04/2007
Time spent: 0 hours
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(Date Posted:05/08/2007 17:40:48)
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HI Kim,
I am not sure why it would make you absolutely sick to your stomach reading this, maybe I did not explain myself to well then, so let me get more in detail, medical director (Dr. A. Jevnikar) , a transplant surgical director (Dr. P. Luke), basic research director (Dr. A. Jevnikar), a transplant pathologist (Dr. M. Moussa), and an HLA lab director (Dr. B. Howsen).----------- Dr.Luke is ALSO a transplant surgical director, he is the best in Canada, and his team plus the Nephrologist would be in the surgery with me, the only reason he has done 5 AT is because of the screening process, he Will not perform this surgery if your other Kidney is not strong enough, so you don't end up on Diaylisis(sp)and other criteria that youhave too meet, I can not say where things will be cut as I have not asked him that yet,, as we are not sure if I can even have this until Spt.6, My husband and myself feel very confident in this Dr and his staff, London University Hospital is renowend in Canada as being the BEST at ahat they do, I don;t think I would want a Dr, who has done 30 to 40 and just hands them out like candy, I personally would prefer a Dr. who takes them very seriously and does all the appropriate testing,
I am sorry yours did not work for you, this Dr who has performend 5, and like I said I can not remember what was with the 5th person, maybe they are ok, I can not honestly say as I really can not remember what he said, let's say that person is doing ok that is 5 AT and 5 success's that's pretty good I believe, and if you are speaking of the 2 year hurdle and then your kinda out of the woods,(what I have read on the internet) that is not true, I have been in contact with someone who has gone 5 years and the kidney has started ascting up again, I really believe that there is not enough info on LPHS and we all have diffrent characterstics with this awful disease, we can not all be catergorized in the same group, what works for 1, may not work for the other, that's why there is no cure for this disease.
I have talked to 2 ppl in the States that have had LPHS and they swear by the transplants, they are living pain free lives,and would have it performed again if there other kidney flares up, which 95% chance it will, and 1 person has had both their kidneys AT and does not regret it for 1 single moment.
I did get me blood work back, everything is ok with that, no I realize that there is no blood test for LPHS, there are alot of steps, at least here in Canada there is from my experience to be DX with LPHS -
Step 1: The exclusion criteria: -
Step 2. The Inclusion criteria:-
The pain is typical of kidney pain.
The pain is chronic and severe
Hematuria greater than 5 red cells per high power field is present in almost all urinalyses
The kidney pain is unusually severe, chronic, and requiring substantial daily opioid use
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And all the Dr.s have used this method, you said "Girlfried I hate to be so harsh but I fear for you" I appreciate your concern, but you do not have to fear for me, I have done ALOT of research on LPHS and yes I have no quality of life right now, So that's why I am choosing too be proactive about this, I have seen approx 15 , Dr.s through this journey, and i have researched the hell out of everything, I have 1 life, and I choose to be pro active in it, I believe I have found the best, and I feel that I am in VERY capable hands. Dr. Luke explained over and over again that this is major surgery not to be taken lightly. which I don'tt, and I believe what he is telling me, he has no reason to lye, he is not even sure at this point I can have the surgery, he won't know until he gets all the tests back, he has told me that it might not work he has been very honest with me, I am sorry your Dr, led you to believe something that was not true, thati s not fair as you did not have all the fact's so you could make an informed decession, I would have dropped his ass and found a new Dr that would not lye to me, I really believe everyone is going to have their own oppions on AT, the ones it does not work for are never going to recomend this procedure, and the ones that got their life back of course are going to recomend it, Again I am very sorry that yours did not work for you, I hope you are able to have some quality of life with your meds.
Take Care
Tracey
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stmll
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7#
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Registered:09/04/2007
Time spent: 0 hours
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(Date Posted:05/08/2007 18:02:36)
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I am not sure where the rest of my post went so I will continue here.....you wrote " Girlfriend I hate to be so harsh but I fear for you" I appreciate your concern but you don't need to be ,I have done ALOT of research on LPHS, I have seen over 15 Dr.s in this journey and I believe that I have 1 life and I choose to be pro-active in it, Dr. Luke said to me over and over agian how major this surgery and it might not work,and not to take it lightly, which I am not. I am sorry that your Dr. lied to you and did not give you the proper info so you could make an informes decession, I would have dropped his ass and found one that would be honest with me,My husband and I both believe that ours is not, he has nothing to lye about, he does not even know if he can preform the surgery at this point until he gets the test back, I trully believe that the ones the AT did not work for obviously will be against them and the ones that it did work for are going to recomed them, this life I am living now has no quality of life, I have a CHANCE yes just a chance to maybe be pain free, I know this is nt a permenant fix but the research that I have done on it and the ppl I have been in contact with via e-mail, and the ppl I have talked to that it has not worked for and all the RESEARCH that I have done on the net, I believe I have all the facts to make a informed decession, and I choose to be pro-active in my life. Again I am sorry that yours did not work for you and your Drs were not fair in the info they gave you, I hope you have some quality of life with your meds, and I wish you the best.
Take Care
Tracey | |
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I am not sure where the rest of my post went so I will continue here.....you wrote " Girlfriend I hate to be so harsh but I fear for you" I appreciate your concern but you don't need to be ,I have done ALOT of research on LPHS, I have seen over 15 Dr.s in this journey and I believe that I have 1 life and I choose to be pro-active in it, Dr. Luke said to me over and over agian how major this surgery and it might not work, I am sorry that your Dr. lied to you and did not give you the proper info so you could make an informes decession, I would have dropped his ass and found one that would be honest with me, and my husband and I both believe that he ours is not, he has nothing to lye about, he does not even know if he can preform the surgery at this point until he gets the test back, I trully believe that the ones the AT did not work for obviously will be against them and the ones that it did work for are going to recomed them, this life I am living now has no quality of life, I have a CHANCE yes just a chance to maybe be pain free, I know this is nt a permenant fix but the research that I have done on it and the ppl I have been in contact with via e-mail, and the ppl I have talked to that it has not worked for and all the RESEARCH that I have done on the net, I believe I have all the facts to make a informed decession, and I choose to be pro-active in my life. Again I am sorry that yours did not work for you and your Drs were not fair in the info they gave you, I hope you have some quality of life with your meds, and I wish you the best.
Take Care
Tracey |
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Kim Hughes
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8#
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Rank:none
Score:177
Posts:177
Registered:01/06/2003
Time spent: 0 hours
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(Date Posted:06/08/2007 14:16:10)
Reply to : stmll
It makes me sick to my stomach to know that physicians -- are/may be taking -- advantage of someone who is desparate for pain relief. My suggestion was to consult someone with more experience than treating 5 patients. I was recommending seeking the advice of a transplant surgeon who has done 30, 40 or more kidney transplants, not 30 or 40 AUTO transplants. Hopefully there is no one who has done that. The surgery you are xxxx-bent on having is really two surgeries: you're the kidney donor AND the kidney recipient. You need a transplant surgeon for both portions of this surgery. In your list of doctors I see "surgical director", "research director", "transplant pathologist". I don't see "surgeon". A urologist removes bad kidneys with no need to consider that the organ must be handled carefully to ensure it will still work once it is placed back in the body. That's why transplant surgeons do the harvesting of donor organs, the procedures for removing the organs are different. And that's why it's critical to consult an experienced transplant surgeon. You said these doctors will be in the surgery with you. Who is doing the cutting?
I must have missed how you were diagnosed. The gold standard is the kidney biopsy. There are clinical findings that can be seen from a biopsy even when all other tests prove negative. I only emphasize this because you indicated you may have lupus. If lupus, an autoimmune disease, is destroying your kidney, or is causing the kidney pain, an autotransplant is useless. Some doctors will tell you that the biopsy is not necessary. I truly believe the lack of a biopsy is why no head-way is being made in the management of LPHS. Too many people are being diagnosed with LPHS who do not even have it so the pool of patients have too many symptoms.
My surgeons did not lie to me when I had my surgery. As I said before, I was the 14th person in the WORLD to undergo the auto for LPHS. My doctors felt this was the best course of treatment. Now, 18 years later a lot of water has gone under the bridge and, believe it or not, a lot more is known about the disease. At the time of my surgery I was only the second patient diagnosed with LPHS at Ohio State University. I was diagnosed in 1987 by exclusion -- meaning nothing else could be found so I must have LPHS-- then diagnosed with biopsy in 1989. The doctor who diagnosed me in 1987 is now 20 years smarter and has treated over 80 patients with LPHS. He, along with the entire nephrology and transplant departments at Ohio State, is dead-set against the autotransplant.
You have to stop and ask yourself why are so many doctors who have much more experience with this disease against the auto? I think it's because the auto is nothing more than pain management. The only reason they do this surgery is to manage pain, it's not going to do one thing to stop the progression of the disease. There are less invasive ways of trying to manage the pain than taking your kidney out of your body and putting it into your pelvis. The destruction within your kidney will continue. But worse, they aren't even sure what is causing the pain in the first place. One of the theories is the tubules become blocked and as a result the entire kidney swells. You may no longer have nerves to your kidney but the area surrounding the kidney still does. When swelling and inflammation occur, it's not just the organ that feels pain, it is the surrounding tissue as well. That's why people experiencing renal colic frequently have diarrhea and vomiting. In this scenario the auto will not stop the pain. You don't mention what other means you have tried to manage this without surgery.
I did a search on the Internet hoping that maybe I had read your post wrong or that I was missing something. Maybe your hospital was better prepared than I thought. What I found was:
"transplantation program, which currently performs approximately 200 transplants each year in the areas of heart, liver, kidney, bone marrow and multi-visceral transplantation," said Dr. William Wall, director of LHSC's Multi-Organ Transplant Program. " at http://www.lhsc.on.ca/transplant/lfp86.htm (that is if I found the right hospital: University Hospitals, London, Ontario) That's 200 transplants a year. There is surprisingly little info on the Internet about this hospital.
By contrast Ohio State University in Columbus, Ohio -- who refuses to do the autotransplant-- "OSU transplant surgeons perform more than 250 kidney transplants per year." at http://medicalcenter.osu.edu/patientcare/healthcare_services/transplant/types/kidney/ and "More than 5,250 people have received transplantation services at OSU in the past 40 years.
More than 400 transplants are performed annually at OSU." at http://medicalcenter.osu.edu/patientcare/healthcare_services/transplant/about/ OSU (It is 4th best in the country for kidney transplants.)does a greater number of kidney transplants than London does of all types of transplants and they recommend against it. Why is that? (This is where I had my surgery.)
The University of Pittsburg (in Pennsylvania): "Today, UPMC performs more types of transplantation than any other center in the world, including liver, kidney, pancreas, small bowel, liver/small bowel, heart, heart/lung, double-lung, single-lung, and multiple-organ transplants. On average, a transplant is performed every 12 hours at UPMC. Since 1981, we have conducted more than 12,000 organ transplants. More important than the number of procedures is the number of people who thrive as a result: UPMC's transplant recipients have survival rates that are higher than the national average." at http://www.upmc.com/Services/TransplantationServices/TransplantionatUPMC.htm University of Pittsburg doctors, which is the top kidney transplant hospital in the United States, also refuses to do the auto. Why is that? (This is where "carnivalman's" wife had both kidneys autotransplanted.)
Carnivalman's wife had a double autotransplant and was pain-free for about 4 years. Frank, would you explain why you now recommend against the procedure?
Tracey, I see someone who is desperate for pain relief -- and who could blame you. I certainly understand, I've been living with LPHS chronically for 22 years. Your husband wants his wife back, your kids want their mother back. I'm only asking that you slow down, consult doctors who have dealt with more than 5 patients and weigh the consequences. Any doctor who tells you he has a 100% success rate is lying to you, but more frighteningly he's lying to himself. It's cocky doctors that get people killed. Even if the doctor is not telling you he has a 100% success rate, that's what you are hearing, you've said it several times that the odds are pretty good. Even if you don't report it here, please find out when the 3 successful transplants were done. His patient #4 is not "doing OK". She lost a kidney. This is the real success rate of the doctor:
- 60% are pain-free, but long-term prognosis is not known as no long-term care has been observed or reported;
- 20% lost a vital organ, prognosis is not known as almost all develop LPHS in both kidneys, possibility is dialysis is greatly increased do to loss of organ;
- 20% prognosis is not known, no data available
From what you've written and what I see on the web about your hospital and doctor, I see a hospital trying to build up its transplant program. There's nothing wrong in that, you just have to decide if you want to be part of the process as they perfect their techniques. I'm only asking you to find someone with more experience -- which won't guarentee success, but will improve your odds. The other thing I would consider is traveling to the hospital where the people you've talked with have found success.
You don't have to justify your decision to anyone but yourself, so please don't think you have to answer any of my questions, either publicly or privately. I want you to ask them of yourself and be brutally honest with the answers. I think having the surgery is wrong. It's not my mission to stop you, only to inform you of all the risks.
Kim
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stmll
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9#
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Registered:09/04/2007
Time spent: 0 hours
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(Date Posted:07/08/2007 01:08:39)
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Hi Kim,
Obvioulsy your not from Canada, you just have to mention that hospital and evryone knows how great it is, when your sick this is the place too be, the the Dr. and I have not gone in to all the details about the surgery as I have said before that I have to wait until the 6th too see if I can have this surgery, This Dr. has performed more then 5 transplants the team of the Nephrology unit is very capable and educated and experienced, along with the Urology Clinic, Nobody seems to be getting the reason why he has only performed 5 AT, I am not saying that he has only performed 5 transplants, I am sating that he has only performed 5 AT, as the screening process is very in depth and he is not going to do something that is going to hurt the patient.
Population wise Ohio has 11,353,140 (as of 2000) [Ohio is the seventh most populous state in the USA..and London has 457,720, so when you compare trantsplant surgeries you MUST look at population of course, so really when you do the math on that, London actually performs more surgeries per capita.
Another thing we have to get clear I DO NOT have Lupus, and many papers have been written and there is lots of data to back up the fact , that when Biopsys have been performed on a group of people some have had normal findings, some have had thin glumeral basemnet, ect, ect, so a biopsy can not prove 100% of the time if one had LPHS or not, if it could it would be impemented around the world to save the patient all the unnescesary tests.
Because the Ohio State and pittsburg refuse too do the surgery, does not mean that that is the RIGHT decession, there are alot of hospitals that believe they can help by performing this surgery, Like I said before the people that it did not work for of course are going to say NO DON"T DO IT and the ones who it did work for will say YES DO IT.. I have spoken by e-mail to a person whoi has had a dbl AT and is doing well and fine, another who has had the AT and said it has saved his life, he has finally gotten his life back.
This Dr. has consulted more then 5 patients, I am not that stupid to just jump on the band wagon, or do something with out researching the hell out of it, for me slowing down, that has all I have been doing for the last year,everythign I have spoken to Dr,s and Dr,s and Dr,s and people that have been living with LPHS for the last year, researching and reading everything I can get my hands on about LPHS, listening and asking questions tp people that can see both sides of the coin, not just going NOPE NOPE don't do it, slow down, I fear for you , Like really I don't see how helpful that is to someone, I live in Canada and I know what the hospitals are like here, I know which ones are good and which ones aren't, just like you living in the states know which is good and which isn't, there are diffent policies inplace here then the states, who is to say that this isn't the Dr. that can help with LPHS, you don't kow, you have never met him, and yes I do believe 4 out of 5 or maybe 5 out of 5 are VERY GOOD ODDS, and too say that they are not, is just not true.
I am not justifying anything to amyone I do not need too, and that is ot the purpose of this post, the purpose is to gave been on all kinds ive more accurate info then what you posted. I realize thatbthis is 2 surgeries, I realize on exactly what they are doing, and I also realize that this may not work, I realize that this is not a permenant fix, I have 3 options #1- get the pain pump, which they do not do here in Canada so it would be a visit to tjer States approx $40.000.00 dollars later plus $800.-900 a fill here in canad when I needed the meds, OHIP does not cover this so this is out of the question, # 2- Stay living on meds that just reek havoc on my system, hurt my liver I am sure with all the crap that I am on, and stay in this forever, which I will get to a point where the meds do not wok anymore and they will have to put me on something else, then there will come a time where they will just be nothing stronger, then what??? # 3- Trt this surgery, YES with knowing all the risks involved.
I am sorry I mentioned this on this board, I feel like I am being attacked, I feel like you think I am stupid, and have not sone any research on this, I feel like everything I say on here is being twisted and distorted to make me sound like I have no frickin idea what I am doing,"your scared for me, slow it down: ect ect....this is ot a way to help someone, this is a way to piss someone off, and really not want to ask anymore questions, or keep anyone informed on what is going on with my life, and making it sound like one of the BEST hospitals that we have here in Canada, does not know what they are doing, and my DR, is just some hick that wants to make me his guinny pig, when that is so far from the truth, and I am a very bright person, just to let you know..My DR, did not guarentee succes, I never said that so I am not sure where that came from, he stressed ove and over that this is a very serious operation, and not to take it lightly, I never said that this ws going to be a success, I am ot stupid...Yes I do need pain control and i have decided that I BELIEVE, this is an appopriate course of treatment in MY case, and I was just looking for a little communication maybe a bit of support and some kind words, not a bashing and twisting and making up stuff that I did not say and bashing of my DR, -who which I must say has never lied to me nor led me onto believe something that was not true, like other Dr,s I have read about on this forum, nor bashing of one of the greatest hospitals that we have here, nor bashing of my sense as a person, I do have common sense, and i can see both sides of the coin, but unfortnately, you can only see 1 side.....
Tracey |
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John01
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10#
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Rank:none
Score:377
Posts:377
Registered:07/10/2002
Time spent: 7701 hours
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(Date Posted:07/08/2007 02:12:50)
Reply to : stmll
utHi Kim,Obvioulsy your not from Canada, you just have to mention that hospital and evryone knows how great it is, when your sick this is the place too be, the the Dr. and I have not gone in to all the details about the surgery as I have said before that I have to wait until the 6th too see if I can have this surgery, This Dr. has performed more then 5 transplants the team of the Nephrology unit is very capable and educated and experienced, along with the Urology Clinic, Nobody seems to be getting the reason why he has only performed 5 AT, I am not saying that he has only performed 5 transplants, I
Whoa Whoa Ladies,
Sure this is a very hot topic and I dont think anyone is calling anyone stupid.
Both of you are going to have to agree that this subject is emotive for both of you, but lets not get into a pitched battle, pull back before it gets too bloody and take a couple of days to simmer down.
So far in the life of this Forum I have never locked a subject or barred anyone for their opinion.
Please just agree to disagree.
John 
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If you have had several good ideas today; keep quiet about them. Someone might steal them.
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reddvl31
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11#
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Rank:none
Score:159
Posts:159
Registered:24/10/2002
Time spent: 0 hours
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(Date Posted:07/08/2007 03:39:41)
Amen to that John!
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stmll
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12#
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Registered:09/04/2007
Time spent: 0 hours
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(Date Posted:07/08/2007 05:45:20)
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Hi All,
I just wanted to post this, some may find it very useful, this was used to help my DR.s help the DX of LPHS, it came from DR.Lee Hebert, Ohio State University, I have been in contact with him via e-mail,
My Dr.s found this very interesting, if anyone would like it please feel free to e-mail me and I can send it to you, you can share it with your Dr, if you are still trying to get a DX, or just for an intersting read...
Take Care
Tracey
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stmll
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13#
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Registered:09/04/2007
Time spent: 0 hours
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(Date Posted:07/08/2007 18:35:30)
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Kim,
You know what there are better ways to inform people, if that's truly how you feel, it's your mission to inform people! I respect my Dr. and the team down at London hospital, and feel I am in very capable hands down there, and I beg to differ with you, you did make me feel like I was stupid or not capable enough to know that things had to be read up on, or like I was not taking this seriously, and personally stress, makes me feel worse, so I think it would be best if you just left your opinions abut the AT to yourself, I have read and heard what you are trying to say, and I have a diffrence of opinion on this, but that's what makes this big world go round is people's diffrences.
Tracey |
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