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carnivalman
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1#
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Rank:none
Score:12
Posts:12
Registered:11/06/2004
Time spent: 0 hours
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(Date Posted:23/07/2004 10:58:13)
To all who have LPHS and are considering an autotransplant, please keep this info on hand. An autotransplant only severs the pathway over which the pain signal travels. Unfortunately, kidney nerves are one of the few nerves in the human body that can regenerate. It is the regeneration of kidney nerves, which cause the reoccurence. At the time of my wife's first surgery, we were advised that the reoccurence rate was about 10%, however if you went two years post-op, without a reoccurence, you were considered out of danger. So, the first sugery was performend and it was considered a success: NO pain on the right side. Six months later and a second surgery: NO pain on the right side.........
However, I wish this were an American fairy tale-- with a happy ending. Approx 4 1/2 years latter, my wife developed pain again. After researching and consulting with her nephrologist, it was concluded that LPHS had reoccurred. At first, the the nephrologist did not believe it had happened but after speaking to several doctors in the medical community, and with more surgeries taken place and more time having gone by, the reoccurence rate is about 30-40% To those of you, who are wondering, no a second autotransplant is considered too dangerous.
From my understanding, this surgery is no longer recomend in America or England.
It now appears, that the only successful treatment is the intrathecial pump and I would like to hear from anyone who has had the pump put in.
Regards,
carnivalman
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koorahk
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2#
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Rank:none
Score:150
Posts:150
Registered:29/04/2003
Time spent: 10193 hours
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(Date Posted:23/07/2004 18:39:12)
I have had lphs for almost 24 years, and in all that time, both my consultant, and GP's that I have been under, have always discouraged me from all of the so- called treatments for LPHS. For this, I am grateful, as they don't appeal to me whatsoever, and I would want 99.9999....% guaranteed success, from whatever procedure i was offered.
Helen
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Hez
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Kim Hughes
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3#
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Rank:none
Score:177
Posts:177
Registered:01/06/2003
Time spent: 0 hours
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(Date Posted:23/07/2004 21:20:42)
Hi Helen & Carnivalman,
So, you'd want a 99.9999% guarentee of success? Ever thought about the chances of contracting LPHS is about 1 in 10 million or so. Hmmmmm?
Thank you, Carnivalman, for your comments on the autotransplant. Ohio State University Medical Center (where mine was done) now recomends AGAINST having the procedure. That is why I was so surprised that the Cleveland Clinic recommended it. Over the past year I've posted my comments against having it done--so I guess I am biased--but I want to know the truth and I want anyone considering an autotransplant to have all the facts. Also, several months ago it was posted that the autotransplant is done for pain control only, just as you've noted. Doctors do not understand the disease process going on so they do not know how to "fix" it. The damage continues even though you may have pain relief for an uncertain period of time.
Finally, there are over 100 members on the forum now. Could all of you please vote, even if you never post another thing and even if you have not had an autotransplant? The more votes the better the picture. Maybe if my friend is considering the autotransplant she could then go to wherever the most success seems to be (She traveled about 2500 miles to the Cleveland Clinic).
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koorahk
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4#
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Rank:none
Score:150
Posts:150
Registered:29/04/2003
Time spent: 10193 hours
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(Date Posted:24/07/2004 18:13:51)
Kim, thanks for reading my posting re auto transplants. What did you mean by asking if I'd ever thought that the chances of contracting LPHS are 1:10 million?
The reason I would 99.9999....% guarantee of success, for any procedure as a so-called treatment for lphs, is that they are so drastic and from everything I've read, not really very successful.
Maybe if an auto -transplant had been offered to me when the condition first arose, when I was 22 years old, and I was working, had all my life before me, about to be married etc., I would have considered it, but at 47 years old I can't be bothered with any more messing about and certainly not an auto- as I belive it can take a lot of recovery and as said before not much success - I also have lphs in both kidneys, so wouldn't fancy having both transplanted!
Just my opinion based on my having lived with lphs all these years.
Helen
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Hez
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tootsiewest
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5#
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Registered:12/04/2004
Time spent: 0 hours
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(Date Posted:24/07/2004 20:29:47)
Hi everyone! I just wanted to throw in my vote of no- I have not had it done. I see a nephrologist at Ohio State and he has mentioned it to me as an option. After reading the negativity towards the transplant I am not sure I would have it done! But, I would almost consider anything if it meant being pain free for a while. I would also like to know if anyone has had a pump placed and so details on it if you could. I made a post about something very simply and sadly enough no one has answered me. All I wanted to know was people's experiences with kidney biopsies. I've heard some awful stories. I would appreciate any info from my fellow LPHS sufferers if you could. Have a good day.
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John01
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6#
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Rank:none
Score:377
Posts:377
Registered:07/10/2002
Time spent: 7701 hours
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(Date Posted:25/07/2004 21:19:57)
The only fault I can find with the survey, is that it only deals with a clear outcome and does not address the other outcome which is 'normal' in that the LPHS moves to the other Kidney.
Chris had her Auto done in 2002 and has been pain free in the transplanted organ ever since, but, it has now moved to her other Kidney. This is the missing category in the survey.
My transplant was successful but it has now moved to the other Kidney.
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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Kim Hughes
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7#
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Rank:none
Score:177
Posts:177
Registered:01/06/2003
Time spent: 0 hours
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(Date Posted:27/07/2004 22:27:26)
I mentioned the chances of getting LPHS as 1 in "whatever" because it really doesn't matter what the stats are if you are that 1. If an autotransplant was 99.999% successful it wouldn't mean much to that person who was that 0.001%-even though the odds look really good.
John, Chris would vote "Yes, it was successful. I had it in the UK." I just asked if the auto was succesful, not are you pain-free or "cured" of your LPHS.
I hope that Chris's autotransplant remains succesful. I'm concerned that anyone considering an auto would be misled by the term "success". Success at the 1 or 2 year point is much, much different than at the 5 year point. I have had LPHS in both kidneys for about the same time. My left one was autotransplanted and is now failing. Is it failing from the auto or from the LPHS? To me, a few years of pain relief is not worth risking the kidney failing 10-12 years later. And, I am really worried that doctors will leave a patient believing that this is a cure for LPHS, when in fact it is really just an incredibly invasive form of pain control. Until a doctor can fully understand the disease process going on they cannot understand why there is so much pain associated with it. And if they can't understand the disease process or the pain process how can they adequately treat LPHSespecially with an auto?
I admit that the reason for the poll was to show that an autotransplant is not 70-80% successful. the topic of an autotransplant shouldn't even be brought up until ALL other avenues have been explored: from therapy, narcotics, intrathecal pump and/or even accupuncture, whatever it takes.
Having lived with LPHS almost as long as Helen, I think we can both say that we have learned to live with it by whatever means available. It doesn't mean it is easy-in fact I am sure Helen has some pretty bad days just like I do. But having experienced an autransplant I would never, ever consider having it done again. Had the doctors been up-front with me back in 1990 I would never have agreed to a transplant at all.
The only thing missing from the poll is if you have had two autos and were they successful. I'll add that option minus where you had the surgery as it would make the poll too long.
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carolinew
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8#
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Registered:19/09/2003
Time spent: 0 hours
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(Date Posted:27/07/2004 22:42:43)
OK no I have not had a transplant, however I have been really interested by peoples conflicting views on transplant.
I come from the school of, I am willing to try anything, well almost at the moment. I have just had to take 10 weeks off work due to LPHS and am at the stage where if I think that I am always going to be like this then I may loose the will to keep going.
I agree that the chances of auto working may be not all that good, but I for one would seriously consider it if it was offered.
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Kim Hughes
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9#
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Rank:none
Score:177
Posts:177
Registered:01/06/2003
Time spent: 0 hours
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(Date Posted:29/07/2004 00:44:44)
I really and truly cannot blame someone for wanting to try the autotransplant. I may be of the same opinion had I not had one. And, granted, medicine has changed dramatically in the past 14 years since my surgery.
What I really want is for those thinking of this to have the full picture because I think the doctors are either not totally honest with patients or in our desparation to feel better we don't hear what they are saying.
Most importantly an autotransplant does not cure LPHS. Its only purpose is to relieve pain. I am sure that doctors understand this but I am not so sure the patient does.
And equally as important is the way we measure success. I am sure that carnivalman's wife's doctors view her autotransplants as a success. Afterall, she remained pain-free for 4.5 years. Had she remained pain-free for only six months they may have viewed that as a success, too. So, I have to ask, do you view this as a success? I don't. She would have to remain pain-free (at least from LPHS) for many years or until some sort of trauma, etc., triggered the LPHS again (since we really don't know what causes it). To undergo such a drastic measure, the "fix" would have to be almost permanent..at least 10 years or more. So, when the Cleveland Clinic claims a 70-80% success rate at what point in time are they measuring this? Are 70-80% of their patients pain-free at 6 months? How many are pain-free at 1 year? 70-80% would be a good number but will they tell you if the number drops to 10-20%?
When you are 25 and have your whole life ahead of you the thought of dealing with LPHS is horribly depressing. And having 3-4 years free of pain seems like a long time. But when you get into your 40s (and it comes much faster than you think) the risk far outweighs the benefit-at least to me. There are other ways of coping with LPHS than moving organs around in your belly.
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carolinew
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10#
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Registered:19/09/2003
Time spent: 0 hours
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(Date Posted:30/07/2004 18:04:15)
I totaly agree that there are other ways of treating LPHS but they all seem to involve large amouts of pain killers. Does nobody else get sick to death of living in a drug induced haze most of the time? Two and a half years ago, my pain could be controlled on DF118s and that was fine, but as time has passed and my body has got used to certain levels of drugs I have now be forced to move on to MST 60mgs along with all the other stuff, voltarol, tramadol, amatriptaline and oramorph for any break through, and then there are all the pills to counteract the side effects.
I WAS a person who would take paracetamol at a push for a head ache, and now I feel like the NHS has turned me into a junkie. If I sound angry , its because I am, I want to be normal again and am willing to take any chance no matter how small to get my life back and to give my family and friends the old me back!
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Rae40
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11#
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Rank:none
Score:2
Posts:2
Registered:18/03/2006
Time spent: 0 hours
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(Date Posted:19/03/2006 00:08:29)
Hi from Soth Africa....my urologists recommeded auto- in 1998 but thank goodness my nephrologist was against it as at that time it had never been done in South Africa so I was to be the guinea pig!! There was only 1 other reported sufferer of LPHS in Sa at that time. I still bleed and have severe pain on occassions but have learnt to deal with it and make some drastic changes in my lifestyle.
Rae
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