I Hate Dialysis Message Board
Dialysis Discussion => Dialysis: General Discussion => Topic started by: kristina on February 24, 2010, 03:25:48 AM
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After my first kidney failure with uraemia and coma in 1971
I was put on the kidney transplant waiting list straight away.
When the medical report (31.1.1973) of my kidney biopsy taken confirmed
my diagnosis of chronic proliferative glomerulonephritis with hypertension
it was checked-up & confirmed again by doctors that I was on this waiting list.
Fortunately my kidneys very slowly recovered to a function of ~40%,
so I thought no more about the waiting list
but I was never notified that I was taken off the waiting list.
Since I have been in ESRF (kidney function now ~10%)
with the unpleasant prospect of losing my kidneys
I naturally wondered how I was doing on the kidney transplant waiting list
& so I made enquiries to that effect.
What I came across was a completely new set-up with regard to the waiting list:
it is no longer a national issue only, it has become an European matter,
meaning, the transplant list is run by a European Central Office. Furthermore,
they have no record whatsoever of my being on their kidney transplant waiting list,
& they were quiet evasive and unpleasant when I pushed them for an explanation.
Unfortunately the Hospital where I was treated at the time
no longer has my medical records as too long a time has passed.
I personally have kept the medical letter of diagnosis of 31.1.1973 of my kidney-biopsy taken
which proves my vulnerable state with my kidney function.
My question is: has anyone experienced being taken off the kidney waiting-list without being notified?
Did you think this was possible? I got a very bad impression from dealing with these offices
& I wonder whether anyone has any insight into this transplant listing matter?
Thank you, Kristina.
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You are not going to like my response.. but then again my response isn't really an answer to your question.
You were on the list nearly 40 years ago. That's a very VERY long time ago. And, as you yourself say, your kidney function improved considerably - to the point that you have not required dialysis in those 40 years (is this a correct understanding?).
I can't speak for where you're from (UK I believe) but down here, you are not put on the transplant list until you start dialysis (or you may be put on, but you are not made ACTIVE). Now I actually think that what most likely happened was that since your kidney function improved (which is pretty impressive, by the way :) ), that you were naturally taken off it as there wasn't a need for you to receive a transplant.
Now I do agree that you should have been informed when that decision was made. It may well have been (also consider this is the 70's we're talking about, when policies and procedures were probably quite different) that you were simply dropped from the list due to your doctor at the time, or hospital simply didn't renew you on the list at some point because of your kidney function. They probably thought it wasn't really an issue because your kidney function had improved so much.
Anyway as I said if you were here even if you wanted to go on the list now you wouldn't be made active(as far as I am aware) until you had to start dialysis (or had a live donor, of course - in which case you wouldn't need the list). It may be different in the UK.
At any rate yes - this is quite a surprise - I would discuss this with your nephrologist at any rate - and get yourself listed(even if not active, so everything's ready for when you start dialysis).
At the end of the day what's happened has happened and it's time to concentrate on the future and not the past IMHO.
(oh and no, I have never been pulled off the list - though sometimes I wonder if I'm still on it given the lack of a call!!! :rofl;)
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Thanks for this extremely logical reply, Richard and I think you are probably right.
I remember being told that I was put on the transplant list because
at that time doctors did not consider that my kidneys would recover at all
& that I would very soon be on dialysis & therefore I would be up for a transplant.
I had no idea that someone on the list had to be activated,
& I do not know whether this same procedure existed when I was put on the list in 1971.
So, you could well be right with your analysis.
I think I should explain that occasionally people who suffer from Lupus/SLE/MCTD like myself
& who suffer total kidney failure, it is not unheard of for the kidneys to completely collapse
& then recover some degree of function which may then last for some time.
This obviously happened to me and I think my kidneys kept going for so long
because I had some extremely good medical advice at that time on diet and life style.
Thanks from Kristina.
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In the last 2 years we have been on and off this list 3 or 4 times, at the moment we are off it and being as my husband is 68 and has started to develop other things I very much doubt we will be on it again. I must say that we have been told every time.
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Hello billibags,
may I please ask you, why is your husband on the waiting list one minute and off it the next?
Is this something your medic does by following a "protocol" for the kidney waiting list?
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We use UNOS or United Network for Organ Sharing here in the United States. They have very strict rules. I imagine it is no different over there.
My wife has been on the waiting list twice (between transplants) and we are trying to get on a third time. The hospital we are working with to get on the list has a very slow process. Jenn has had to have referral from a nephrologist, seminar class, chest xray, CT scan, blood work, gynecologist visit, trip to the dentist. They also will take you off our list if you are "noncompliant" (which is a somewhat subjective measure). When she gets on the list, they will want her mobile phone number, occasional testing, and a blood sample ever so often.
When you get a kidney from someone who is brain dead, they need to have your blood on file (for a crossmatch) and a way to contact you immediately. This requires work on your part and there is really no way around it. They only have a few hours after removing the kidney to put it in you. They aren't going to dust off your old file, hire the police to find you, then evaluate your health to see if you would make it through the operation. They have to know all of that beforehand.
My wife has gone to the hospital a few times while waiting for a transplant as kind of the first runner up should something happen to the first person picked to get a transplant. Waiting to know if you are going to get that kidney can be very a very stressful. She used to carry a pager around with her in the '90's should her number come up to get the next transplant. When they do call, it is a serious emotional experience. If they don't get you, they will call everyone on a list you give them to try to find you. My wife had about 5 voice mails in a matter of 20 minutes when she was out walking around and got the call.
Wish I had an easy answer for you.
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"Noncompliance" ?
After my first kidney failure in 1971 I met a Professor of Medicine who advised me
to eat a vegetarian diet, keep a perfect weight, avoid alcohol & pain-killers etc. and I certainly did that.
"Noncompliance" ?
When I came to London in 1979/1980 I was referred to two NHS-nephrologists at the UCH
and they tried to make me get involved with them but I refused.
They then made sure I received no health care.
Could it be that my refusal to become personally involved with them
made them take me off the kidney waiting list without my knowledge?
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I think that's a bit of a stretch.. but you also have to remember you're talking about events 30+ years ago. So much has changed since then - the technologies and understanding of the problems (for example folks these days wouldn't be advised to become vegetarian!). Non compliance is definitely a reason to be taken off the list, at least temporaraily - but that non compliance is medical in nature in most cases - eg: not taking binders correctly, not fufilling dialysis requirements and so on. I couldn't see how not going with some doctors would take you off a list - after all you'd think they'd need a good reason to have you taken off - and that doesn't sound like it qualifies.
Again though I think you're focusing on events in the distant past looking for a reason - I don't quite understand why the focus is on events in the 1970''s. Nobody here will be able to tell you what happened or why. You've gone almost 40 years avoiding dialysis which is absolutely amazing in my book. I'd want to focus on that than why you were taken off a transplant list 30+ years ago. It could have even been something as simple as that you matched way back then, they contacted your doctor or whatever who informed them that you'd improved and at that point didn't need a transplant and the natural reaction probably would have been to take you off the list in that case until such time as you needed it again. That time is now coming up.....
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Never heard of someone being taken off the list, but a gentleman who started his testing with me thought he had been placed on "the list" about the same time as I, maybe a month later, only to find out several months later that he was "on hold" because he needed some procedure they didn't tell him about. He was very frustrated.
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Is your status removed or inactive?
This is from the USA organization UNOS that maintains the wait list for organ transplant candidates:
At any given moment, not all patients who are listed are actively awaiting a transplant. Those who are in inactive status have been evaluated and accepted by a transplant center. They are not actively eligible for an organ offer due to their current health status, incomplete insurance/financial arrangements or other reasons. These individuals could be reactivated by their transplant center at any time without losing priority for an organ offer.
In the USA the transplant hospital evaluates candidates and communicates with UNOS. They require annual follow-ups to maintain the status on the list. I know it may be different in the UK, but if I were you I would ask the transplant team you are connected with to update your status (or clarify it.)
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If you had regained 40% kidney function you probably would have been disqualified for a transplant. Now that you are at 10% kidney function, it's time to take matters into your own hands and talk to your nephrologist about getting listed again. Do this as soon as possible because you need to start accruing time. Who knows what happened back in the 1970's and you may never find out. I can say for sure that a lot has changed since I've been listed for just these seven years.
At my transplant center in the U.S. you can be referred for transplant at 20% GFR. If you pass all the physicals they then put you on the waiting list and you are placed as "inactive" but accruing time. This means You will NEVER be called until they list you as "active" on the list, which happens only when GFR is 14% or lower and they will definitely call to tell you when you are activated because they will require a monthly vial of blood to put on file for checking matches.In the U.S. a person could conceivably obtain a pre-emptive cadaver transplant without ever having dialysis. These have been the new rules in place for the last year. I am sure rules could change again over time and they already have since I was listed 7 years ago. My GFR hovers around 13-16% GFR and I have been "activated" and "de-activated" 4 times in the last year alone. It's enough to drive me crazy, but they make the rules and if I want a transplant, I must be compliant.
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kristina, My husband was on the waiting list in 2008 then he had a heart attack and they took him off it, then he was back on until he got peritonitis e-coli bug, he is now off it because they have found out that the heart attack caused more problems than they thought plus I also think his age has a lot to do with it.
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Thank you for your kind thoughts, it is very much appreciated.
I desperately need a chance to survive my ESRF with a kidney function of 10%. I try find answers what has gone wrong in the past, to find my future.
Here are a few examples why it is so crucial for me to find a positive way forward:
1) It was very unlucky to meet the above mentioned NHS-nephrologists at the UCH. I was also very unlucky to be registered with a female NHS-GP who tried to befriend me in a strange & odd way. I refused & wonder if this NHS-GP gave me a bad reputation after I refused to accommodate her private wishes?
2) Before suffering cerebral haemorrhages I was very unwell & went to NHS-doctors. They did not check my blood pressure & I suffered cerebral haemorrhages due to untreated & uncontrolled high blood pressure. It was a miracle that I survived.
3) My discharge letter (typed on 2nd June 1982) states “patient has been instructed about home dressings”. There was no NHS-nurse/doctor to assist & I was forced to do the dressings of the wounds myself at home. I lived alone, was too weak to do my own shopping and on top of it all I had to do the dressing of the two huge operation wounds. I had no NHS-health care & it was a miracle that I survived.
4) I suffered a stroke on 13th October 1991 due to untreated high blood pressure. Again I went to the NHS-GP with whom I was registered. Instead of being medically helpful & checking my blood pressure, he used me for his own medical gynaecological research & he did not assist me medically to control my blood pressure & because of this I suffered a stroke due to uncontrolled high blood pressure.
5) After my discharge from St. Thomas Hospital I was half-sided paralyzed on my right side, unable to speak or feed myself, but whilst in hospital with the stroke, the NHS-GP with whom I was registered with, had me already taken off his NHS-register. For the next 13 months I was left without any NHS medical care and no NHS-GP in my district would let me register with them; it was a miracle that I survived.
6) My Lupus/SLE/MCTD was diagnosed in another country on the Continent when I was given a chance to be diagnosed in 1995 and 2003. Unfortunately this chance no longer exists.
7) Because of my experiences I contacted Sir Liam Joseph Donaldson for help and on 23rd September 2003 his Senior Personal Secretary Miss Lee Morris sent me a letter saying a NHS-GP had been found to help me medically. When I first saw this NHS-GP I was told, he could not possibly look after me medically & he made sure I understood there was no point seeing him. On 11th April 2005 I received a medical letter stating no specialist can be found in the UK to treat my Lupus/SLE/MCTD.
I have gone through all possible help-lines, UK-charities, NHS-complaints procedures without getting anywhere. The NHS-Medical Ombudsman (Ms. Abraham) investigated my case & does not think I have reason to complain. No solicitor takes my case.
The Prime Minister’s office published a fax-number (0207-9250918) for help. On 25th September 2008 I faxed my letter but received no help & no reply. I tried again & again but have not received a reply.
I am in no position to do this, but for years I had to pay for my blood tests (Creatinine, Urea, Potassium & Sodium).
For over 6 years I have not seen a NHS-GP, I have no NHS-nephrologist/specialist to go to for medical help, never had NHS-dialysis/transplant information & have no NHS-doctor to go to. I am aware there is not much time to find a positive way forward with my kidneys functioning only 10%., but I don’t think there is a real chance for me to survive on the NHS.
What would you do in my situation?
Thanks, Kristina.
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Hello.
First of all... I think it's pretty obvious you were taken off the list due to your kidney's recovering. You cannot be on the waiting list if your kidney's are functioning and your not needing dialysis and your kidney function isn't declining. So whenever your kidneys got better and stopped declining, you were no longer elegible to be on the list. They should have notified you, unless that wasn't how they did it long ago, but other than that, they were correct to take you off the list.
As for your kidney's recovering, what treatments were you receiving to help them recover? I have SLE, which BTW is Lupus (Systemic lupus Erythematosus). I don't know if you knew that or not because you keep saying "Lupus/SLE" when they are the same thing. Anyways, as I was saying. I have SLE, and when my kidney's were first failing when I was 15, I started Cytoxin and during the coarse of 12-18 months my kidney function reversed and my kidney's worked fine again. So just wondering what treatment you had.
Why are they telling you there is no Rheumatologist's in the UK? I don't live there, and I have never been there... but I found tons of Rheumatologists in the UK in 5 minutes doing a search online for them. Maybe I am not understanding something?
Angie
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Huh, harsh words from another Lupus-patient!
There are different versions of Lupus (i.e. Discoid Lupus Erythematosus etc) & mine is Lupus/SLE (Systemic Lupus Erythematosus) & MCTD (Mixed Connective Tissue Disease) with their components.
When I suffered my first kidney failure in 1971 I was admitted to Hospital in a coma in winter and discharged in summer when my kidneys were at ~ 3% to 5% function. I don’t know what treatment I was given whilst I was in a coma. The biopsy taken when I was a little stronger, diagnosed chronic proliferative glomerulonephritis with hypertension.
In 1995 I was sent to another EU-country for diagnosis and there I was diagnosed with Lupus/SLE.
I was registered here (in London) with a NHS-rheumatologist at Charing Cross from 1995-2003. He had no treatment & no answers. I suffered a SLE-flare-up & was in excruciating pain. He did not take notice of my flare-up or the deterioration of my kidney-function caused by that flare-up.
Why did I go there? Because I was very unwell & I kept hoping he could give me treatment or medical help.
In 2003 I was (again) sent for diagnosis to another EU-country and there I was diagnosed with MCTD.
My excruciating pain was explained as fibromyalgia.
Back here I was referred to a NHS-rheumatologist at the Royal Free. He frightened me by telling me he was there “on probation” because he had a “black belt in karate” & had harmed a patient. He admitted he knew very little about Lupus/SLE/MCTD. No treatment & no medical help were offered.
Asking other SLE-patients how to find a NHS-specialist did not help either, they were petrified of their NHS-rheumatologists and many young SLE-patients I knew from 1995 had already died.
I asked Lupus UK for help. They do not help. They either want my money (which I don’t have) or they want me to raise money (cannot do, I am too unwell) or they want me to take part in medical research (not well enough).
On 11th April 2005 I received a medical letter stating there is no specialist in the UK to treat my Lupus/SLE/MCTD. No help was offered.
My kidneys only function now ~10%
What would you do in my situation?
Thanks, Kristina.
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First of all I am with RichardMel. Look you went about 40 years without needing dialysis.
To be honest wth you I cannot blame lupus for your kidney failure. According to you In 1971 you had a kidney biopsy adn it stated " chronic proliferative glomerulonephritis with hypertension". That is not lupus. With or without lupus, your kidneys will continue to decline even once they reached 40%, because in my :twocents; at 40% they are not 100%.
I have lupus, was diagnosed at the age of 16. THe biopsy confirmed that lupus attacked my kidneys. I had predisone and cytoxin. Without a kidney biopsy to blame lupus, you cant put the blame on lupus. YOu probably do have SLE. But way before you were diagnosed with it, you already had a decline in kidney function.
As for the transplant list. Why would they keep you on if you no longer needed dialysis or had to start dialysis? I have a friend of mine in person who after being listed for 4 years and on dialysis for 4 years, got his kidney function back enough to get off of dialysis for a year and a half! So they decided to put him on hold because they said his kidneys would not last more then just a few months. And when he did go back to dialysis he was on hold for 6 months to make sure he didnt go off of dialysis again.
But for you, I would think after you not needing dialysis for as long as you have, they just had no idea if you were ever going to need it. Remember you must have the need or be ready to start dialysis to be on the transplant list. THere are sooo many people who are and have been on dialysis for many, many years who are still waiting for a kidney.
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What is stopping you from getting a doctor referral to start the process of getting on the transplant list?
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Questions aside, Kristina, if I were you I would move the heck out of there and go someplace where you can get some medical treatment.
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I heard healthcare is free in Hawaii... not sure how long you have to wait to be an eligible "citizen".
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Just to clarify, I wasn't intending to sound harsh. I apologize if you took it that way.
I have dealt with Lupus since age 12, so by no means did I mean to come off as harsh.
I agree with all the other posters.
Angie
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in oz you cannot be on the list if you aren't on dialysis. Also if you skip more than 3 monthly bloods you are taken off the list (we must give the red cross a new sample of blood by the 15th of each month for them to do cross matching on any possible kidneys) if you fail to have your transplant bloods done you are off the list.
I'm assuming you weren't having bloods done? i don't know how it goes in other countries but providing blood samples seems as though it would be universal (from commonsense, i mean how else would they cross match you) so i'm not meaning to sound harsh but if you weren't doing those then one would assume you weren't on the list????
My function went up to 23% back in 04/05 and they took me off PD (catheter out and all) and the moment they stopped D i was off the list, stopped taking my transplant bloods and my name was put as inactive. Because i was only out for just under 18 months i was still down as 7 years active on list when i got my transplant. but being that the time between you regaining your function and sadly losing it agian i doubt they would have kept you as inactive, you probably were totally removed.
The main reason as others have stated is that when you have enough function to survive without D they don't want you (regardless of your country or other health issues) on the list as you don't need a transplant, and since so few cadaveric transplants are done each year (compared to those waiting) keeping you on the list when you don't need D is rather selfish to those who are waiting, doing D every day or every other day and are desperate for some kind of normal life.
Also you really need to see a neph, you need to get assessed as other health issues can preclude you from having a transplant, if you aren't healthy enough to recieve one then they will be very hesitant in giving you one (regarldless of the health system, OZ, US NZ UK dones't matter). Also Obesity (i don't know your size just speaking generally), wether or not a previous transplant failed through you wilfully stopping your meds, other diseases, how well you are (eg if you need dialysis and reufse to start and get too sick they may not consider you for a transplant), all this affects wether or not you will be eligable.
Considering your health issues you may need to see more than one DR, holding out hope for one specialist to treat you obviously isn't working, you need to put the issues you have with NHS on the back burner and think of your health. Unfortunately it will be hard for you to get help anyother way. No other country will be willing to accept the financial cost of such healthcare unless you can get free healthcare some how. Being a citizen of the UK they will generally insist you get medical attention there. (govts are pretty much the same, OZ even reject a brit a visa as his daughter was chronically ill and didn't want to absorb her medical costs).
I really feel for your situation but i that i what i think. I hate a Dr in particular, had he not been more interested in golfing than me i wouldn't have ever needed a transplant, he had 36 hours to treat me and did nothing, my DR found me by chance and saved my life by airlifting me to another hospital. So yes i can understand how bad some Dr's can be but..... Your health and quality of life need to come first so as i said, put any issues on the back burner and get yourself sorted out first.
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Thanks for your kind replies and thanks for clearing a misunderstanding.
Over the past 30 years I have tried to find a helpful NHS-doctor & came across mayhem, confusion, pandemonium, discrimination & apartheid.
I find it impossible to receive NHS-health care in my ESRF.
I was told by a senior PALS-officer – an office set up to assist people like myself - that NHS-patients with chronic diseases are being “weeded out”
& undergo experiments like Germany 1933-1945 & vulnerable patients with rare diseases like mine are being misused by the NHS for medical experiments.
I was informed I "have the wrong disease" to receive proper NHS medical care.
I was also told by the“Advocacy Alliance” – an office set up to assist people like myself - I should “do a Camilla or a Fergie” to receive NHS-medical care,
that females in the House of Commons are called “Blair’s Babe’s” & a Leader of the Lords was an actress who had become respectable.
I am not a moralist, they can do as they like. But their life-style would not suit me.
It made me very sad to listen to such worthless information when I was hoping to receive some positive help forward to receive health care in my ESRF.
I came to London over 30 years ago to study manuscripts and rare books at the British (Museum) Library.
The British (Museum) Library has played a very important role in my career.
NHS-GP’s/doctors/nephrologists/specialists were always aware of this fact.
I realize that I have to prioritize & need to find urgent medical care in my ESRF.
I have survived well with the medical advice given by a Professor of Medicine after my first kidney failure in 1971.
But I can’t survive any longer on his medical advice given to me almost 40 years ago.
He also told me in 1971 that a perfect weight & a vegetarian diet might give my kidneys a chance.
I have always been a slim vegetarian.
I have tried for medical support in my ESRF from the Red Cross, Médecins Sans Frontières (MSF), Médecins du Monde (MDM)
& many other organizations/charities. There is no help & no reply.
EU-organizations claim we are a big European Family, but when one is in need of help one is alone.
I have contacted nephrologists/rheumatologists in Switzerland, Germany, Italy, France & Spain for medical help in my ESRF,
but they are not prepared to pick up victims of the NHS. I was particularly disappointed by specialists in Italy & Germany.
They are aware NHS-healthcare discriminates against patients with rare diseases like my Lupus/SLE/MCTD & ESRF.
The UK-Healthcare Commission informed me in no uncertain terms that a NHS-doctor to give me NHS-healthcare for my Lupus/SLE/MCTD & ESRF does not exist.
If anyone knows an organization/charity to contact, where & how to get genuine medical care in my ESRF, I would be very grateful.
I have read many UK-citizens travel abroad (i.e. Spain) for medical care. HOW do they do it??? HOW is it done?
Thanks, Kristina.
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That is crazy to hear. I have never been out of the country, so I really have no idea how any other country works.
It's extremely sad to hear that your being told all of this stuff by professionals, and extremely terrifying to hear as well. To treat people like this in 2010 is just insane, let alone any year.
Lupus isn't rare at all. Actually when I was dx'd at age 12, 19 years ago, it wasn't rare then either... however I had never heard of it before, and it wasn't getting hardly any attention as far as medical diseases go. So I am not sure why they told you it's a rare disease.
Personally I think they are diagnosing way too many people with Lupus these days, and anyone who has some symptoms but can't get a DX for anything else they stamp them with Lupus. It's sad. Okay... back on subject.
Your diet and exercise and all of that can play an important role in helping keep your kidneys going longer... however, if they are decreasing then they are going to continue to decrease over time no matter how slim or what you eat, they will eventually fail.
Since your basically saying the country you live in will not give you any medical care... do you plan on moving? You said you need to seek medical treatment immediately, so then what are you doing as of now to make that priority happen?
Is your only concern getting on the transplant list? Or are you trying to get a nephrologist to start dialysis?
Is your Lupus currently active? I don't recall if you said so or not, but if your Lupus is active, your not going to be allowed on the transplant list until it's in remission. (At least that's how it works here.)
Angie
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To be honest wth you I cannot blame lupus for your kidney failure. According to you In 1971 you had a kidney biopsy adn it stated " chronic proliferative glomerulonephritis with hypertension". That is not lupus. With or without lupus, your kidneys will continue to decline even once they reached 40%, because in my :twocents; at 40% they are not 100%.
I just wanted to add my thoughts on this as well. Just because she wasn't DX'd with Lupus in 1971, doesn't mean she didn't have Lupus then. Many people go years and years with other problems being treated and never knowing the underlying cause of Lupus until after the fact. Glomerulonephritis with hypertension is seen more commonly in people with Lupus, because the Lupus caused the GN, and as we all know, Lupus causes hypertension.
I do believe however, that not being proactive in your health care and knowing your kidney function wasn't 100% anymore, she should of been being seen by a doctor on a regular basis to monitor her kidney function.
I have lupus, was diagnosed at the age of 16. THe biopsy confirmed that lupus attacked my kidneys. I had predisone and cytoxin. Without a kidney biopsy to blame lupus, you cant put the blame on lupus. YOu probably do have SLE. But way before you were diagnosed with it, you already had a decline in kidney function.
You were DX'd young as well, I don't meet many other Lupus patients that were DX'd young. I was DX'd at age 12. I also suffered kidney failure due to Lupus nephritis, and I also had prednisone and cytoxin. That let my kidney's recover function and I went another 2 1/2 years before they started to decline again. I don't know her whole story, but it seems Lupus could be to blame for her kidney failure as well by causing the GN itself. Either way, it really don't matter the cause anymore and what matters is what she plans on doing about her situation now.
Anyways, all other views and opinions aside, nice to meet you Lillupie. It's nice to be able to talk to someone who has dealt with some of the same issues and around the same ages for once. Not so nice either of us had to deal with it to begin with, but you get what I am saying.
A little on topic and off topic responses here. My bad. ;)
Angie
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I sort of liken your Lupus with my Goodpasture's disease.
These are very rare diseases and not many specialists in the fields.
Stanford therefore simply sends me to the nephrologist department to help me manage my scarred kidneys.
There is no Goodpasture's Disease specialists to be found, and I was told it makes no difference anyway, because the nephrologist at Stanford can simply treat me for ESRD. That is what I'm suggesting to you. Perhaps you will not find a Lupus specialist, or the kind of specialist you want because that kind of doctor is a rarity. I recommend you move beyond that whole personal requriement and find a nephrologost in the English health system who can help you with ESRD. If you qualify for the English health care system, then you should find a way to use it. No other Country is going to willingly take on your health care issue if you haven't been paying into their system. Settle for where you live and what you can obtain there. (unless of course you are a multimillionaire and $ is not a factor). Find someone to treat your ESRD. Since you are 10% functioning, you cannot keep putting this off. Best of luck to you and your efforts.
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I guess I don't understand why you aren't being treated for just kidney failure. Why not at least treat one thing? My nephrologist only treats my kidney disease. I have go to other specialist for different things. Maybe just start with one part of your disease and not focus on the huge picture. Just my thoughts. Wishing you a good solution to this problem. :2thumbsup;
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Angela,
Dont you remember me?? i was Lillupie. I think i am on your myspace. We both know Shay. We were both in a online lupus support group for lupus years ago. I am Lisa Bongiovanni from Detroit, Mi. you are a few years older then me.
Lisa
rTo be honest wth you I cannot blame lupus for your kidney failure. According to you In 1971 you had a kidney biopsy adn it stated " chronic proliferative glomerulonephritis with hypertension". That is not lupus. With or without lupus, your kidneys will continue to decline even once they reached 40%, because in my :twocents; at 40% they are not 100%.
I just wanted to add my thoughts on this as well. Just because she wasn't DX'd with Lupus in 1971, doesn't mean she didn't have Lupus then. Many people go years and years with other problems being treated and never knowing the underlying cause of Lupus until after the fact. Glomerulonephritis with hypertension is seen more commonly in people with Lupus, because the Lupus caused the GN, and as we all know, Lupus causes hypertension.
I do believe however, that not being proactive in your health care and knowing your kidney function wasn't 100% anymore, she should of been being seen by a doctor on a regular basis to monitor her kidney function.
I have lupus, was diagnosed at the age of 16. THe biopsy confirmed that lupus attacked my kidneys. I had predisone and cytoxin. Without a kidney biopsy to blame lupus, you cant put the blame on lupus. YOu probably do have SLE. But way before you were diagnosed with it, you already had a decline in kidney function.
You were DX'd young as well, I don't meet many other Lupus patients that were DX'd young. I was DX'd at age 12. I also suffered kidney failure due to Lupus nephritis, and I also had prednisone and cytoxin. That let my kidney's recover function and I went another 2 1/2 years before they started to decline again. I don't know her whole story, but it seems Lupus could be to blame for her kidney failure as well by causing the GN itself. Either way, it really don't matter the cause anymore and what matters is what she plans on doing about her situation now.
Anyways, all other views and opinions aside, nice to meet you Lillupie. It's nice to be able to talk to someone who has dealt with some of the same issues and around the same ages for once. Not so nice either of us had to deal with it to begin with, but you get what I am saying.
A little on topic and off topic responses here. My bad. ;)
Angie
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i found this, Dr John Agar is in Melbourne Victoria (australia) but he appears to know a bit about SLE treatment both prior and after Dialysis. if you post a message for him he may be able to assist with guiding you in the right direction. I wouldn't get too deep into your dealings with NHS, just tell him that you cannot find a specialist and NHS wont refer you to one can he assist or guide you in what to so (my experience is that aussie DR's are very loyal to their compatriots, but i've never come across a bad neph out here so i guess they have a reason to be loyal to each other).
anyway good luck, i don't know if he can help but i do hope so. http://forums.homedialysis.org/showthread.php?2311-About-Dr.-John-Agar
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Angela,
Dont you remember me?? i was Lillupie. I think i am on your myspace. We both know Shay. We were both in a online lupus support group for lupus years ago. I am Lisa Bongiovanni from Detroit, Mi. you are a few years older then me.
Lisa
OH! :lol; Yes hun, I remember yew. I don't know why I didn't register it in my head that yew were Lisa.
I feel retarded now. ::)
Angie
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Thank you, Jenny. It is very sweet of you
to give me Dr. Agar's name & the name of the Hospital.
I shall check-up if I have already written to him
& if not I shall write a letter straight away. Thanks again.
I am pleased that Angie & Lisa have met again here.
I know how great it is to meet again after a long time.
Kind regards from Kristina.
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Dear Jenny,
thanks for Dr. John Agar’s contact details.
I tried to register on the forum of home dialysis on 2nd of March 2010
but I was unable to register & unable to get an e-mail through.
I tried several times again & again, but it did not work.
If you have any other ideas how I might contact Dr. Agar I would be grateful for your suggestions.
I don’t know why I could not register on this site & I wonder if the site is only for Australian residents?
Thanks, Kristina.
This is the message I tried to send him:
Dear Dr. Agar,
I am wondering if there is a chance that my ESRF (kidney function 10%)
will continue to complete renal failure, or stabilize, or have a chance of getting back more kidney function
as happened when I first suffered total kidney failure with uraemia and coma in 1971.
A biopsy in 1972, when my kidneys were stable enough for a biopsy,
diagnosed chronic proliferative glomerulonephritis with hypertension.
I have had lifelong Lupus/SLE/MCTD.
I weigh 57,5 kg and since 1971 I have been a vegetarian,
and since suffering from ESRF I have followed a much more strict diet
to control potassium and sodium without any medication.
I ask for your considered opinion, because for the past year my kidney function
has remained stable at about 10% and this makes me wonder
whether I have any hope of keeping my kidneys or am I fooling myself?
Thank you very much for your time in considering this,
I would be very grateful for your opinion.
Thanks, Kristina
email: schmidt56@yahoo.co.uk