I have just had my appointment which I have waited 8 months for cancelled because of the junior doctors strike next week and she could not give me another date.
I just cannot believe my bad luck here.
I just do not know what to do now - how will I know if its progressing or not.
I am on 20 gfr at the moment and I was relying on the consultation to find out if things were going well or not.
I have yet another blood test coming up but that is for my own gp with whom I have an appointment with at the end of March.
Its wait wait wait all the while now and I just do not know what is happening - I am scared and frightened - no one seems to care anymore.
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fartikins
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I don't know where you are. Do you have something like Quest which is a clinical laboratory. They do blood test for people for a fee. You can do your blood test there, at least you'll get the results and have an idea what is your latest GFR. Sometimes the blood test results do give you a brief description telling you if it's too low or too high. Just an idea.
hello thanks for your kind reply - I am in the uk and there is nothing you can do about it. its awful especially like me you are on the edge and you don't know what is happening whether its good or bad.
I did buy some blood tests from Amazon but haven’t used it. Could that be an option. I’m in the USA so my primary doctor runs labs in between visits with the nephrologist.
Get your GP to requisition a Renal blood draw at your upcoming appointment.
Edit: It's only a 72-hour walkout. I'm sure you can reschedule in a timely fashion, tell them you will accept a cancellation slot, whatever will get you in as soon as possible. That's always worked for me.
You have your resuts.. research... nothing will change... just keep doing the right things... all you can do.. and if do not think you can handle the wait.. you have an option of buying private health insurance..many places do telehealth .. for a fee...sometimes we need to pay for the things we need...you said a while back your days our numbered.. all of our days are numbered...live today as if it were your last and the same tomorrow...you are CEO of your life...
you should request that your gp put in an order for your kidney labs. i would stress that your egfr was 20 as a result of your most recent labs.it sounds like things are very different in the uk. if you were in stage 3 i could maybe see waiting but not in stage 4 or 5. also as ckd gurl sais ask to be put on the cancellation list. i know in the us i've been able to get appts. sooner that way. often times you won't get much notification but you need will to be flexible.
rhank you for your reply, I am afraid things are so bad over here now you are having wait 6 months for a blood test even if your gfr is low - you can't just order one from the doctors - they would laugh you out of the surgery
I don’t have any answers just to reiterate that I’m also in the UK and I don’t think people understand how bad things are here. It was a sizeable peritoneal cyst that caused ckd I was at 22 and whilst in hospital after months of not knowing it was at 20, possibly lower at times. I’m at 38 now which is lots better. I have bilateral stents, after I had bilateral nephrostomy’s. But again, they took 10 weeks to switch them over instead of the 4 weeks they assured me they would take.
They drained the cyst and now it’s back for a third time. And the surgical consultant has been dragging his heels. About getting interventional radiology involved to drain it again as it’s too dangerous to remove. I’ve been told my case is complex and complicated after having septic shock, due to a perforated bowel, which was removed completely. Was in a coma for nearly 3 weeks in ICU. And they believe that’s why I have the cyst. So I also have a permanent ileostomy.
I’ve been emailing and trying to push to get things sped up. But like you I know the NHS is already broken. My urologist is doing what she can but the surgical consultant isn’t the best when it comes to getting things going (an older friend of mine also has him as a consultant)
Just to say I empathise and get you about the state of our healthcare. And most of us can’t afford private healthcare. I realise people think the NHS is fantastic and yes most of the staff are fantastic but the whose system is broken sadly. And it’s a worry. Thinking of you.
So sorry to hear this. I wonder if this is the aftermath following Brexit, a massive restructuring of your economy and institutions and affecting the movement and acquisition of pay of goods and personnel (including doctors). Sadly, the most vulnerable in society often can become casualties. Hope it all sorts out quickly for you and your nation.
very true. Part of it is brexit and losing staff from European countries etc. a huge part of it is the way the government has run our NHS into the ground over the last decade. It will end up being a mostly privatised health system, and those working in the NHS don’t want this either. I chat to one of the nurses who works in Interventional radiology and he has worked in both and prefers the NHS. It’s genuinely very sad and frightening at times.
I thought this was the situation. In the US, many of our nephrologists are from abroad. If it's privatized, your nation will likely be competing for doctors against other nations - pay, benefits, locations, etc. become important. It's very concerning for the vulnerable. Praying that it's resolved soon and well for all of us.
Hello - yes I et very scared about what is happening in the uk - all the medics are going to Australia who are actively recruiting. This country I so over crowded with migrants now and yet they are first in the Q before our nationals. I would rather die than grow old in this country I loved so much.
No - its all political - the nurses were offered a really good pay deal to stop them striking but they will reject it - they want more. They say we can't afford it yet we are paying 6 million pounds a day to house migrants who cross the channel. Unless you can afford to stay in the Dorchester don't come to the uk because the hotel will partly be used to house young migrant men - that is scary.
im so sorry to hear that. please try and take care of yourself. the us also has its problems. as you probably know there is no national system. you either need a job that offers health insurance ( usually expensive) or be over 65 and qualify for medicare. most states offer a medicaid program for very low income people. and there are still millions of people without insurance.
I realise we have been very lucky with the NHS. Just hearing about insurance over with you guys since my early twenties terrified me. What I think, and many think will happen is that the government will continue to sell off and privatise more and more of our NHS. And their will be a similar system to what the US has eventually. The conservative government have spent the last decade running the NHS further and further into the ground. It’s so sad. When you work part of your tax goes into the NHS. Many have paid into the system for years. Some of us have had to stop working due to ill health but the NHS was set up for everyone. It’s a sad state of affairs.
I have had the best of the NHS. I have worked for 53 years and have always paid my national insurance -now I am old and sick no one wants to know. I have to fight tooth and nail for any tests I need - I haven't had a urine test for 4 months despite having a constant UTI - they just won't do it. I am going to try again tomorrow - I take an antibiotic every day and I just do not know how things stand at the moment.
they end up in an emergency room and work with social workers to try and get on state medicaid or some sort of charity program if eligible . some people are responsible for payment.
Do you have to wait 14 hours in the er while all the staff stand around looking at their mobile phones - woe betide you if you dare say anything though.They will just ignore you.
it depends on the seriousness of the problem. i have heard some horror stories. there have been a lot of issues in health care since the start of the covid 19 pandemic. there has been a general shortage of health care personnel.
you are 100% right.. when you are old a sick you die..it is the way of nature
here in america the nurses are not standing around...they are working their asses of ..often caring for non complient complaining patients when the real sick ones wait...sigh.. my son working in ER said the beds in the halls were full and two young people died just waiting and the staff was exhausted and overworked...that was last week... so stay out of the ER if it is not critical.. so real ill people get care..
I have to disagree with your stance on migrants and refugees. I don’t align myself with those beliefs. I also know that when I go into hospital which I have often since I nearly died of septic shock in 2020 of a bowel perforation that 99.9% of the staff aren’t standing around doing nothing. I go into a very busy ward, they don’t have time to stand around and if any staff member was doing so I wouldn’t go down well with the rest of the team. I don’t put staff on pedestals, call them heroes or angels. And I’ve met a few nasty ones but they aren’t standing around doing nothing up here. Maybe in another hospital I know of well lol. But that’s another story. 😬
All the best. Definitely give them a call and say you would be willing to take a cancellation.
I would assume you know that they cannot get an accurate UA if you are taking antibiotics ..even one a day...not sure why you need to see your doc now.. and stay away from the ER and let the wonderful health care overworked workers take care of people with real emergencies.. getting lab work is not an emergency..that is why the emebgency rooms are so crowded.. people runnhin to the er instead of waiting to see their doc..lol
Kudos.. see you solved your wown problem...not sure why you were going on about the long waits in ER if you do not use it..lol..I do hope you informed the nu4se you were on antibiotics tho..makes a difference.. but you put on your problem solving hat and took care of it... great
Hello - the er waits are a national scandal and there are some real horror stories emerging from there. Problem is we are such a small island with a huge population which is growing by 2/300 per day with illegal boat people rocking up in Kent via our life boat service. It costs a fortune keeping them in hotels - money that could be spent on our health personnel and updating old and antiquated buildings. An average er serves a population of over 5 million and its getting worse. I get frightened because I have this illness and it makes you feel very vulnerable. there are er departments areeras in every major city in the uk and we have a population of over 60 million to be divided out among them . No urgent care centres to speak of and I was told yesterday that 3 old people collapsed in the queue waiting to try and get a gp appointment - its a national disgrace. Now I hear the gp,s does want to come out on strike because they don't like their new contract which means they have to offer some sort of help to everyone who rings up.
The old saying life is tough ad then you die...lol....Think of all the centuries the UK was an empire and what it did to the rest of the world... call it retribution..lol...your true colors are showing...and smile👍😋
To go off on a tangent we hear how horrible the immigrants are here in the US too. But what exactly do you expect them to do? They risk their lives trying to escape the violence and wars in their nations. It's a global problem. Have you read about what goes on in refugee camps? They have no reliable food, water, basic sanitation, lack of medical care. If you are warm, dry, have a roof over yourself and have food and water then consider yourself fortunate as millions do not. I consider the fact that I have access to dialysis a blessing. Rant over.
Thank you!!! and remember it is all those hard working young immigrants that pay taxes that support us old folks.. we need young people... We are all immingrnt...
Yes! This is very, very true. Most Western nations now have a stagnant or near-stagnant birthrate - these nations have a hard time replacing those retiring and then passing away. In the US, the shrinking workface is creating dramatic problems. In 1940, there were 42 workers per retiree. Today the ratio is 3-to-1; by 2050 it will be 2-to-1. Many more workers are needed to meet and fund senior citizen needs re medical care, retirement income, and more. Some countries are smart - they're issuing easy to get visas to those migrants that fit or can be trained for hard to fill jobs.
So right.... Japan is getting hit hard and a lot of Europe..We desperately need yung healthy workers from all over the world to breathe life into an aging outdated economy..I love the diversity of the imigrants..they bring far more than they take.. far more..
When I see someone on this site disparaging the "boat people" it sickens me..She aught to be grateful these people are here paying taxes and working taking care of our old people in nursing homes for low wages..thank you for your reply.. Bravo!!!
Here in the US a lot of immigrants work jobs no one else wants....packing houses, slaughter houses. Those packaged chickens and beef. And while plant based is all the rage who do you think picks those veggies and fruits? It's certainly not any teenager around here. You can't even get them to come out and help fix a fence and get paid to do it.
ou are so right. Many years ago wwhen I was working in Fresno at Hospital I had to go out to a "migrant farm worker ...horrendous place in horrible conditions to check on a group of women who were accidently sprayed with pestacide by a plane..those poor women with young babies forced to live in old trailers with the kids.. while the growers got rich off of them and we get cheap food..and they could not even complain as they were not documented.. modern slavery
It irks me to no end when people complain about a situation but don't offer any solutions. The UK House of Commons are voted in, correct? So they are your representatives.
Finding possible solutions takes a little work. Take a piece of paper and at the top put the "problem". Then under it document what happened - appointments are delayed, hard to get, take x amount of time. Then be specific....on May 8th I applied for (or however your appt system works), requested and appointment to a nephrologist. If you called write down who you spoke to, the date and time. (it's best to get stuff in writing). Ask other people if they have the same issue, keep them anonymous but date and time. Then see if you can get to the root cause of the issue (it's always money). Do you have investigative reporters? If so see if they can follow the money trail to see where the fraud, waste and abuse is...there always is with govt entities. Then you can offer a solution when you understand the root cause.
Perhaps defund the Royals.. that should save a bit...lol Seriously I agree..I stay political and volunteer.. primarily for animals.. my view is the buck stops with me..
When Canadians were slaughtering baby seals we organized..and it grew from there with a boycott on Canadian fish..it sure helped..Lack of health care has many many reasons why..in US there are litigation issues..We seniors expect to live forever and with the new expensive technologies we want it all.. we also have far more obese and eat far more crap..and no one wants to take care of themselves.. and the system in the UK or here is so mismanaged..
Defunding the Royals and lot of our congress is a good start..laugh
We have gotten off track.. but it is interesting.. I doubt Fatikins will change.. it is sad situation for her family.. There ar so many people here that a good and kind so I keep that in mind..I will everyone the best..
Problem is here the migrants are not allowed to work. They get paid some money and generally are well looked after in 4star hotels.and they keep coming. We should prioritise our own old poor people first.
Hello - this is a problem unique to the uk - all the migrants make its to France and people smugglers are waiting to crowd them onto inflatables at 50 a time to cross the channel at the narrowest ;point between Calais and Dover. We had 50000 last year and we are expecting 80000 this year - the French will not help in any way so we cannot turn the boats back. We have just given the French 150 million pounds to building a migrant centre within the next five years - that won't happen. e are only a small island and we have had 12 million extra people in the last decade - no gp services no school places -and yet the government won't do anything to stop them coming over at the rate of 500 per day. Anywhere where there is a hotel now it is commandeered for these people. There are hardly any women or children they are all young men of fighting age and all they do all day is stand on street corners harrassing the local females. Yes I am angry and so are all the other people who forefathers fought to keep us free. We have no go areas now because it is too dangerous to walk there. I despise living in this country now because if you are ill you can't get any treatment unless you pay fortune out and we have already done that through our taxes when we worked.All these people will need some sort of medical service and they are usually seen before our own countrymen. We have always been a fair free and open society but that has gone now because of a very weak government.
Thought you were speaking of the Vietnamese Boat People from the 70s. lol
This issue is neither new nor unique to the U.K. War, famine, poverty and political repression have put millions on the move around the globe. Britain receives fewer asylum-seekers than European nations including Italy, Germany and France.
Well said CKD girl.. well said ..and to Fatin person.. I live in Arizona.. a border state and we have far far more migrants escaping horrendous conditions in both central and south america..and as a caring mother i woud be doing the same thing to protect my children.. what a sad selfish person you are.. the system needs to be quicker to bring thee peple into society and allow thwm to work.. as an old person.. imagine them saying .. the young people that they sure do not want to spend any money on the old folks who use up all the resources.. a 20 yearl old man from afric can do more for socety and a 70 year old selfish ignorant woman who has kidney failure and will die soon anyway..
And to Fartikins.. if you despise the UK.. then leave... go live with your son... you said he lives abroad...perhaps then you can find soke peace yu need........and for a moment appreciate what you have... and realize everyone deserves a chance
Indeed, Kelly. I hate even a whiff of racism, I just had my bladder cancer surgery and I'm feeling a little cranky, but nothing make me more cranky than racism. We have plenty of immigrants in Canada, and they help to make our country more interesting and vibrant; we are a melting pot, we all are a bit of one now I think, and immigrants do many jobs that others are not interested in doing. They don't just stand on the corner and take up spots at the hospitals as some might infer. lol
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Stage 2 ckd and autoimmune disease, what can I take for inflammation?
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