John01
|
1#
|
Rank:none
Score:377
Posts:377
Registered:07/10/2002
Time spent: 7701 hours
|
(Date Posted:11/06/2007 14:01:00)
Hi Starsign,
Yes there several specialists treating LPHS in the UK, although I am not sure who to recommend, as I don't know your location.
In the North, there is Prof Flowers at Manchester.
In London at Guys/St Thomas's there are Mr Koffman and Mr Glass as well as several others at other hospitals, but these two are the best known, although I am sure that other members can also help you out with names.
I would also get yourself referred back to the Pain Clinic so that they can work out a treatment regime for you.
Regards
John
--------------------------------------------------------------
If you have had several good ideas today; keep quiet about them. Someone might steal them.
|
| Support us |
Create free forum and click the links below and your donations will make a difference here. |
 |
www.dinodirect.com
Online Huge Store for Various Cool Gadgets, Nintendo Wii Controller, iPod Charger, iPhone Cases, BlackBerry Cases, Laptop Accessories, Rechargeable Battery, LED Tactical Flashlight, iPod Earphones, iPhone Charger, Wii Controller, iPod Cables, Video Players, Music Players, Car Accessories, Cell Phone Accessories, Video Games Accessories and Hobby Gadgets.
If you use the code "DDLIFE", all orders will get 10% discount plus worldwide free shipping!
|
|
Alison Banister
|
2#
|
Rank:none
Score:68
Posts:68
Registered:04/10/2004
Time spent: 0 hours
|
(Date Posted:16/06/2007 16:38:43)
Dear Starsign12,
As John said, a good pain specialist is a priority as the best possible pain relief will help you to have pain controlled times. Each of us takes different cocktails of medication & every day I cannot believe how bad the pain is when it breaks through. And that's with Oxycodone in slow & fast release forms & Diamorphine injections. Oramorph never worked for me.
Re. a cure, it's only not found yet because not enough money is going into kidney research & not many medical practitioners are interested in LPHS. One of those who is is a Dr. Ahmed Ghanem & he is working at King's Lynn hospital in norfolk. He has researched a possibel link between hypermobile kidneys & LPHS. He has trouble with the medical profession being scathing about anything to do with LPHS & my local urologists don't even believe it exists!!!!! How ridiculous is that!
I think that we each need to raise awareness of this condition & then the care can only get better. Dr. Hebert has writen down his observations & a recommended plan of care for hospital admission. I have a copy if you would like it. I hope to be involved locally in devising a policy for caring for people with kidney pain. Things must be improving though as you got diagnosed in a year wheras many of us had a much longer wait than that.
Hang on in there. You will only ever have to take one moment at a time - that's what I based my NKF presentation on see www.kidney.org click on 'perceptions'.
I have seen specialists at The Royal Free & King's College hospital in London.
Yes there is a link between tiredness & LPHS. Chronic pain causes tiredness as does the medication.
Happy to support you in any way possible,
Best wishes from
Alison
--------------------------------------------------------------
Alison
|
|
kima
|
3#
|
Rank:none
Score:2
Posts:2
Registered:27/08/2007
Time spent: 0 hours
|
(Date Posted:28/08/2007 15:32:46)
Hi
Well this is my story!!
At the age of Eleven they found out that i was born with scarred kidneys and needed a stinct to be put in both kidneys because i had reflux. By the time i was seventeen, and after many tests and problems they removed my right kidney due to a lump and it had stopped working. For four years i had no trouble, no pain, no problems. Then in my last year at uni in 2003 i returned home one night form a meal in absolute pain. i was crippled over and though at one point i was dying. This was the start! i suffered with this over the next couple of months and was in and out of hospital. The doctors checked my kidney but there did not seem to be any problem.
By 2005 i nearly lost my job and was in a great depression with the pain. We had been to specialists in all the fields and had test after test. Each one came up with a different story even saying that i had created this pain in my head or that i was a druggie wanted pain killers. I was 22 years old and utterly depressed thinking i would spend the rest of my life going through this and being in so much pain. The worst time was when i nearly missed my graduation prom night as i was stuck in a hotel room on the floor in pain.
Over the time though the pain seemed to calm down and i accepted the fact i had this pain but nothing could be done. ONly one person though at this time had suggest LPHS, and they said that there was no research for it and could not be sure.
Well i have had nights of the pain since it started in 2003 but the worst it has ever got was over the last month, which has prompted me to join this community. Monday 6th August i woke at 2 in the morning to 'the pain' and spent four hours taking my medication, having hot baths, trying yoga and relaxation techniques to help it. By 6 when my partner came to see where i was the pain was getting worse. To cut a long story short i then spent two weeks in hospital, with one operation, and a full proper diagnosis of LPHS. I was then referred to a specialist ( thirs one in the past five years) and told to go home on morphin, adn strong painkillers. I was quite appalled that nothing could be done. i had missed three weeks of work only a month into my new job, was hooked on morphin that coming off gave me the sweats, and had stressed and worried my family. My docotr in the hospital was excellent and tried his best but he did not know enough about the LPHS so that is why he referred me to the pain guy.
Well after successfully getting off the medication morphin andcutting down the drugs so that i could actually have a bit of normality in my life i went to the pain specialist to see what he could offer. Well, other than Therapy he said nothing. I don't need Therapy i need someone to explain to me why are we left to just deal with this pain when most of us are not dealing very well. I am 25 years engaged and in a good job, but i find it hard to accept that i will have to spend the next 20 years or so hooked on drugs that do more damage to my kidney and bowel and no explanation of what is going on.
I believe in living my life to the full and i am thankful that there is nothing wrong with my kidney otherwise i would be in great trouble! I will live my life to the full and enjoy every minute but i still wish and hope there is someone out there taking this seriously and helping those people who need it.
Well there is is, i have great angry for this so called LPHS and feel sad that there is no real research or help. If i am mistake please let me know. If there is more than Therapy to help me, please tell me cos that is the only help they have offered me.
thanks
--------------------------------------------------------------
Kim l. Ashford
|
|
John01
|
4#
|
Rank:none
Score:377
Posts:377
Registered:07/10/2002
Time spent: 7701 hours
|
(Date Posted:29/08/2007 02:02:47)
Hi Kim,
You are not alone in your anger and frustration.
All of us, both patients and supporters go through this all the time and we all have to work out our own way of coping with it.
To a great extent it does impinge on your lifestyle, meaning that you always have to allow for LPHS to rear up and throw a spanner in the works. You can do something to reduce the occurences though but in saying this, what works for one may not the same for you.
Reduce your intake of caffeine or cut it out completely and the same with alcohol. Both can aggrevate the situation. Keep your intake of fluids up to keep the Kidney working regardless of what your Kidney is telling you not to do.
What medications are your taking at the moment?
Do you have Micro or Macroscopic haematuria.(whether you can see the blood and clots or not.)
I know that you don't like the long term implications, but until they come up with something better we have to bear it.
You also appear to have been through the usual ritual of accusations of being a junkie/pyscho etc which seems to be standard for the NHS.
The other advice I have for you is to get a copy of what material you can get on the Net together so that if you have to be taken to A&E the Doctors can see that it does exist and what you need to be treated also get your parents and fiance involved so they know what is 'normal' for you and can help your case when it happens.
The easiest way of explaining LPHS to people is that LPHS is like Renal Colic(Kidney Stones) without the stones, just all the pain and suffering.
It is down to you how you handle all of this but the most important thing is not to get over stressed as this is the greatest thing that sets it off.
I expect that other members will get in contact with you either through this Forum or by E Mail as you probably appreciate by now that there are many paths to coping with it.
Wishing you well
John
--------------------------------------------------------------
If you have had several good ideas today; keep quiet about them. Someone might steal them.
|
|
kima
|
5#
|
Rank:none
Score:2
Posts:2
Registered:27/08/2007
Time spent: 0 hours
|
(Date Posted:29/08/2007 14:03:38)
Hi John
Thank you for your reply. It was really good to hear from someone that actually understands this and how it makes you feel. My family and friends are amazing but they don't know the pain mentally and physically it puts us through. i suppose it is good to know that i am not alone out there!
To answer some of your questions i am on Diclofenac, co-dydramol, cyclizine ( for the sickness) and when the pain gets really bad they have now given me oramorph ( morphine in a bottle!). Before i was taking Tramadol but it made me so ill often did not help the pain. Everytime i get the pain and have gone into hospital they have checked a urine sample and it always has bloo though you can not see it it shows up when tested.
I am going to get as much info off the internet so that doctors, A & E staff and even my employers known about what is going on and that i am not just having a day off work cos i feel like it or in the hospital because i want my next fix or drugs. I hate the drugs, the make me so ill and not myself and i think that is one of the depressive sides is being on the medication. However i do try to not take any when i am well and not in pain. i also have had a good year in fitness and health so i am going to kick back into that to make sure my life is as fulfilled as possible!
I had heard about the caffine and alcohol and will definitly try to cut down. What about caffeine free coffees and tea ??? i don't smoke and have cut right down my intake of alchol so shouldn't be a problem to quit that.
Wow i feel better already, thanks so much i feel like i am so not alone anymore. i know i can deal with this and have a life i want!
xx
--------------------------------------------------------------
Kim l. Ashford
|
| Support us |
Just click the links below and your donations will make a difference here. |
|
|
|
stmll
|
6#
|
Registered:09/04/2007
Time spent: 0 hours
|
(Date Posted:30/08/2007 14:58:39)
|
Hi Kim,
Sorry to hear that you have this horrible disease, but glad you found your way here, you are not alone, I am still so angry sometimes that this has happened to me, and I get very angry and frustrated when we always seem to miss things because I am not doing well, I stay away from caffine, I drink decaf Tea, and I don't really have a problem with that, I stay waay from alcohol, I might have a glass of wine everynow and then which seems to be ok, try not to get too stressed, and I can't eat alot of red meat, I end up getting very sick, so it's just not worth it for me, I am on the Frntanyl Patch with Morphine for BT pain, I am not pain free by any means, I am actually looking in to get the Auto-Transplant, this is where they take the kidney and relocte it in your abdomen, hence you will still have LPHS, but hopefully you will no longer feel the pain, Not everyone agrees with this procedure, but for me where I am at, with what quality of life I have, I feel I have to try it, I am 34 married with 3 kids, The last cpl weeks I have been in bed 6 of the days due to pain. I know you don;t like the idea of being on meds the rest of your life but as John said there really is not much else out there for us, I could not imagine the pain I would experience if I did not hace the cocktail of meds that I m on, I would be in the hospital that's for sure, and when I get really bad the pain level still amazes me on how bad it is, I no longer can work due to the pain, I have always worked , I worked in an Insurance Brokerage, where I just had to sit at my desk, ad I could not even do that, On the days I am feeling ok I go to the grocery store amybe doa few errands and then that's it, I am back at home in major pain, somedays I cannot even get up to feed myself as the pain is so bad, even with the pain meds I am on, it hits everyone so diffrent and at diffrent levels and really what works for 1 does not work for the next, that is why it is so hard to treat LPHS, you might hae to go through alot of meds to find the right combo for you. I wish you the best of luck finding the right pain relief, and if you ever want to talk, you can just e-mail me, or talk to me on here.
Take Care
Tracey |
|
|
|
|
Alison Banister
|
7#
|
Rank:none
Score:68
Posts:68
Registered:04/10/2004
Time spent: 0 hours
|
(Date Posted:01/09/2007 17:10:42)
Dear Kima,
I am amazed at how you manage on the medication you are on. Like others I have to take far more than that to even touch the agonising pain. I have had one kidney denerved but it still hurts & that can happen with auto-tranplant too. Apparently it's more effective to have both kidneys denerved but who's to say what works as we are all different. I found that one kidney dropped 5cms & caused the ureter to kink & the other wasn't draining properly. The pain is just horrendous even with all the deep breathing & relaxation & this therapy & that. And I challenge anyone to relax during an acute attack! Can't type much as too drugged & in too much pain, see www.kidney.org under perceptions for an article I wrote.
Alison
--------------------------------------------------------------
Alison
|
|
|
