Please pretend I called this thread something more imaginative than "Hello".

[Paul]

My name is Paul, I have been on HD since March this year. I live in England, but the dialysis is run by a German company (sub contracted by a local NHS hospital). The last two years have not been good to me:

My kidneys had been slowly dying due to hereditary high blood pressure (very high blood pressure) aggravated by type two diabetes. However about 2 years ago I contracted a bone virus in my foot, and treating that seriously sped up the death of the kidneys. Also, more annoyingly, I was due to go on PD, but due to the virus my doctor's opinion was that it would probably spread to the PD tubes, and he convinced me that this would be a bad idea with the line "...And then you'd probably die." That sold me on HD.

I live in England in a town called Croydon, which won an award a few years ago as "The Scummiest Place In Britain", and that does not do it justice, it is a lot worse than that. I'm currently living in one of the worst buildings in the worst town. Rear wall is only half there, back end of the building is held up by things like giant car jacks. It was a good building when I moved it, then the landlord sold out and the new owner is incompetent, thoughtless, stupid, and greedy. Not to mention a crook. My plans were to move out, had everything almost sorted out, was about a month or two from leaving when I got very ill. After a couple of weeks in bed I made it to my GP, who took a blood test, and when the results came in immediately ordered me an ambulance and sent me to hospital. I ended up spending three months in hospital with the bone virus I mentioned above.

When I got out of hospital I had been robbed (it later turned out that the thief was one of my neighbours). He took everything I had of value and a hell of a lot that had sentimental value too. I had already packed most of my stuff in the hopes of moving, he simply emptied all the boxes on the floor and took what he wanted, leaving the less valuable stuff covering the floor. On top of my medical problems this sent me into depression, I simply cleared a corridor from the door to a chair (the kitchen was relatively unscathed) and lived in the chair and kitchen for several months, doing not much more than sitting staring at the walls (even slept in the chair, as the bedroom was inaccessible). I'd lost my job because I was no longer fit enough to do it, so I basically got through my savings. Eventually, when the money ran out I gathered enough sense to go looking for state benefits, which is what I am living on now.

My place is still a mess, I'm slowly clearing up from the robbery, but it is depressing, and I'm not allowed to use my left side for heavy work, which makes it slow going. But as soon as I've finished I hope to move out of this building and out of this town. That may happen sooner than I intend, because my landlord wants to redevelop the building, so wants me out (The other apartments  are already empty).  He has threatened that, if I do not move soon, he will just hire a couple of guys to throw my stuff out in the street and change the locks while I am at dialysis (I listed his shortcomings above, I could also add a word that brings into question the marital status of his parents at the time of his birth).

Basically, that is my life at the moment (and I left a few bad bits out). I still have times when I have to talk myself out of stepping in front of a tram. The only thing keeping me going is the hope of eventually getting on the transplant list (another bad story as to why I'm not there already) and the hope of moving to Norfolk (Norfolk, England, not the American one) where the land is flat and the sea is close. But most importantly, where it is not Croydon.

[smartcookie]

   I first have to congratulate you on how witty and imaginative the title of this tread is!  I can already tell you are going to be a great asset to IHD! 

Secondly, wow.  That is one crazy and awful situation you are in.  I cannot even imagine what you have been through.  Please consider us an outlet for your frustrations because it sounds like you need to vent.  I am sure Kitkat will loan you her big stick to help with your landlord, too!

[MooseMom]

Croydon!  You are right...it is the armpit of England.  I lived in Riddlesdown (between Sanderstead and Purley and Selsdon) for almost 20 years, and I can attest to the nastiness that is Croydon.  I hope you get to Norfolk quickly because it is a much nicer part of the world.

Do you do dialysis at Mayday?

Dialysis and chronic ill health are so much more difficult to cope with when your living conditions are depressing.

We are all pleased that you have joined our community and look forward to hearing much more from you.  Thank you for joining!  Let us know how you get on, OK?

[Michael Murphy]

Good Luck I hope you escape Croydon, it sounds like Trenton in New Jersey.  I hope things turn around for you. But welcome to the site.

[Paul]

Thanks for your replies.

[Paul]

Do you do dialysis at Mayday?

No Purley. It is a Fresenius centre under contract to St Hellier Hospital, which is my main Kidney hospital. I was given the choice of Purley or Mayday as I live equal distance between them. I chose Purley, as Mayday is really good at killing patients (they have had a few goes at me), and their staff know nothing about kidney disease.

Basically, Mayday is one of the worst hospitals in London. My ex-boss' father ended up being rushed to hospital in an emergency ambulance (I forget why). As they drove past Mayday he laughed and said "You've missed the hospital." The paramedic replied to tell him he would never drop a patient off at Mayday unless it was so urgent that they did not have time to get to the next nearest hospital.

[iolaire]

Welcome to the group.  Sorry to hear about your housing problems well you are dealing with two major health issues.  I've been to various Fresenius centers in different countries (non in UK) and generally find them to appear fairly good quality.

[MooseMom]

Do you do dialysis at Mayday?

No Purley. It is a Fresenius centre under contract to St Hellier Hospital, which is my main Kidney hospital. I was given the choice of Purley or Mayday as I live equal distance between them. I chose Purley, as Mayday is really good at killing patients (they have had a few goes at me), and their staff know nothing about kidney disease.

Basically, Mayday is one of the worst hospitals in London. My ex-boss' father ended up being rushed to hospital in an emergency ambulance (I forget why). As they drove past Mayday he laughed and said "You've missed the hospital." The paramedic replied to tell him he would never drop a patient off at Mayday unless it was so urgent that they did not have time to get to the next nearest hospital.

Is there still that dialysis clinic in Purley right in the middle of a roundabout?  Right where Riddlesdown Road meets the Brighton Road?  Is that where you go?

(PS:  I just have to ask.  Are you a Palace supporter?  If so, my condolences.  Terrible season so far.)

I had to go to St. Hellier for my first renal biopsy that diagnosed my fsgs. 

I spent 6 weeks at Mayday when I was pregnant/after the birth of my son.  Mind you, that was back in 1991, so maybe Mayday was better back then.  I'm glad to know that it's pretty bad with patients with kidney disease because whenever I go back to visit, I always wonder where I should go if I got into some sort of renal difficulty (I have a transplant).  I guess I won't be asking to go to Mayday!!  I DO know that they have a good eye clinic there.

Well, that was all apropos of nothing, but I was surprised to encounter someone on IHD who knows where Purley is.  It IS a small world!

[Sue]

Hi Paul, I was born in Croydon and most of my family on my fathers side still live there. I left there as a child to live in Bucks and now live in sunny Perth Western Australia. I am pre-dialysis, Welcome to IHD.

[cassandra]

Welcome to the site Paul


 


Take care, Cas

[kristina]

Hello Paul,
I am very sorry how you feel about Croydon and I can't blame you for feeling like that, given your terrible experiences!
But ... I myself had only good experiences with Croydon. First of all, many ages ago I had my second art-exhibition at the Central Library in Croydon and it was quite a success and the other good experience with Croydon was, when I was still pre-dialysis, my husband and I had the good luck to get an introductory lecture about "survival on dialysis" and we still feel very grateful for that "no frills" lecture. We had travelled all the way to Croydon for this lecture and it was certainly worth it!
I am very sorry about your experiences with your landlord. Is there any possibility that you could apply - through your council - for a place in a Housing Trust ? At least you would not have any landlord-problems there ...  and I fully agree with you about the question you have about the marital status of your current landlord's parents when he was born ...
What your neighbour did to you is just unspeakable! It really sound as if you are at the moment at the wrong place at the wrong time and I do hope you can leave this horrible house with its evil people behind you as soon as possible.
You might have guessed already that I am a Londoner and I love every minute of it. I think it was Samuel Johnson who said : a person who is tired of London is tired of life...
I do hope your situation gets much better soon and I send you my kindest regards from Kristina.
P.S. You say your dialysis-unit is run by a German company (sub contracted by a local NHS hospital), how come?

[Simon Dog]

P.S. You say your dialysis-unit is run by a German company (sub contracted by a local NHS hospital), how come?

My guess is he is referring to Fresenius, a multi-national with tentacles in dozens of countries but headquartered in Bad Homberg, Germany.

FMC is the largest (by patient count) chain in the US and has a US regional HQ as well.   I suspect England may be similar.

[Charlie B53]

Welcome to our IHD 'Family'.

One thing no one can take away from you is your warped sense of humor.  Much like mine, it helps me to survive.

Life delivers a lot of surprises, testing us in so many different ways.  Somehow, we find ways to manage and live on.  It ain't easy.

Letting off stress, venting, raging, can be such a relief.  We've seen a lot of that, and encourage it, as we know just how good it can feel to air it out.   Sort of like eating a huge meal of something that creates a lot of gas during digestion.  The pressure builds and builds....until you just GOT TO let it off before it makes up blow apart at the seams.

We will be here for you.

Take Care,

Charlie B53

[Paul]

Thanks for your replies, Sorry it has taken a couple of days to answer, for some reason this thread is not sending me "new reply" messages, and I only just realized that there were more. In answer to several questions posed (by several different people):

Is there still that dialysis clinic in Purley right in the middle of a roundabout?  Right where Riddlesdown Road meets the Brighton Road?  Is that where you go?

Yes, that is the place. It is weird in there at the moment because Dialysis has the top floor of an office building and all five floors below it are unoccupied. So you go up through an entirely empty building to dialysis and it has the same effect when, on a TV cop show, someone has set up an illegal transplant theatre in an empty office block.

(PS:  I just have to ask.  Are you a Palace supporter?  If so, my condolences.  Terrible season so far.)

Ooooh no, don't follow soccer, apart from the occasional ladies' game.

I'm glad to know that it's pretty bad with patients with kidney disease because whenever I go back to visit, I always wonder where I should go if I got into some sort of renal difficulty (I have a transplant).

St Hellier. They have a dedicated renal department in St Hellier with two wards for kidney patients. Although I was dumped in Mayday for my foot, they sent me to St Hellier for the actual operation in case there were problems with the kidney at the time.

I DO know that they have a good eye clinic there.

I beg to differ. I edited my first post down considerably before hitting "Post" because it was a lot longer, and full of all my medical problems. There are more than those I have posted here. I removed several because I was in danger of being a bore. One of the ones I removed was my eye problems (Doctor: "The bad news is you are steadily loosing your sight, you will be blind in about twenty or thirty years. The good news is: Don't worry about it, long before then, your kidneys will have killed you.") And I can tell you, that in my experience, Mayday's eye department was awful. A few years back they got so bad that the health authority stepped in and closed the department down. It is now run as a satellite department by a different hospital.

I myself had only good experiences with Croydon.

I'm guessing you only visited, you never lived here. Either that or it was back in the 1980s (or earlier) before the decent people moved out and the drug dealers, professional thieves, and other undesirables moved in.

Is there any possibility that you could apply - through your council - for a place in a Housing Trust ?

As an absolute last resort. That is where they put sick old people while they wait for them to die.

I think it was Samuel Johnson who said : a person who is tired of London is tired of life.

One of my favourite quotes, but I do not include the outer boroughs in that.

You say your dialysis-unit is run by a German company (sub contracted by a local NHS hospital), how come?

Nowadays the NHS sub contracts a lot of work to private clinics (and occasionally to private hospitals). Fresenius is a German dialysis company who had (by the time the NHS was "part privatised") spread over the USA and much of Europe. So as soon as they were legally able, it made sense for them to branch out into Britain and start offering their services to the NHS.

[MooseMom]

Paul, please don't ever worry about boring us with other medical problems besides kidney related maladies.  Many, if not most, of us have other physical problems.

Yes, you are right about the eye clinic at Mayday!  My son still lives outside of Croydon (although he has lots of mates there so often ventures into Croydon to meet up with them.  Still, the town is not his favourite place to spend a Friday or Saturday night!) and attended the eye clinic at Mayday over the course of a couple of years.  Now that you mention it, I do seem to remember that it is affiliated with Moorfields.  Is that right?

What is your dialysis clinic like?  Do you like it?  Are the techs good to you?  Such an odd place for a clinic!  Every time I pass it, I wonder what it must be like to be a patient there.

[Paul]

Moorfields is not affiliated with it, it replaced it. The Mayday unit was closed down andMoorfields was contracted to take over.

As to the Dialysis clinic. It has more space that either hospital (per patient) but it is understaffed. This may not be their fault, it may be due to the NHS contract. Unlike the NHS clinics you get a TV each (in the NHS you look at one big screen), which is good but can cause problems with the remote controls clashing. They prefer using pipes to fistulas, my fistula was supposed to start being used at Easter. They have only just started using it (although there is a longish story about that). Their biggest problem in normal times is their promotion system. Basically the best two nurses get promoted to management, and when one leaves the next best nurse gets promoted. This has three problems. Firstly they keep loosing the best nurses from the nursing pool as most of their time is taken up in administration. Secondly good nurses do not necessarily make good managers, and they have had two poor quality ones and one truly dreadful one (the truly dreadful one, at least, fell off the command chain). However the second in command at the moment is a very good manager, but not the best of nurses, so I'm hoping this means that they are learning.

As to "Do I like it?" The answer is "No, it is dialysis, so I don't like it" However as a clinic (building layout etc) it is the best in the area. Nurse wise, they are considerate and caring (I had to sneak through the "staff only" corridor once when the door to the other side of the clinic was locked, and the walls are filled with notices telling the staff to smile and look happy, so I'm guessing this is a front for most of them, but they do it well). However the nurses in St Hellier were better nurses, on average.

As to "Paul, please don't ever worry about boring us with other medical problems", think before you offer! My first attempt at the post was so long I doubt anyone would have got to the end, and so depressing that some of you would probably be offering me suicide pills.

(Interesting side note. I was sure my spelling of suicide was wrong so I tried to spell check it in Google. Rather than just give the correct spelling, it gave me the 'phone number for the local Samaritans!)

[Paul]

Sorry, just noticed you asked about techs. Unlike the hospitals which have nurses and techs (techs sort the machines, nurses put you on), all the work at the clinic is done by nurses except for one tech, who is still a trainee. He seems nice, but he is too busy concentrating and trying to get it right. He will probably be OK when he is more confident. The previous tech was very nice, but knew nothing about Shakespeare (we did a TV quiz on the subject and as well as getting all the questions wrong, she was impressed at my knowledge, which is limited at best). However I don't see a knowledge of Shakespeare being important in that job.

[MooseMom]

Yes, of course you're right; Moorfields is not affiliated with Mayday in any way.  Apologies for my unclear wording.

I've never understood why organizations "promote" their best people into positions that do not necessarily suit them.  I see it all the time in sports, and it rarely works out well.

What is a "pipe" as opposed to a fistula?  We must use some other term here in the US.  Do you mean something like a chest catheter?

Who "likes" dialysis?   Still, I'm glad to hear that you seem to be reasonably happy with the staff who oversee your treatments.

Paul, I've been a member of IHD for 10 years now, and I've read many, MANY intros from new members that are very dark and disturbing.  Some people bare their souls, telling their stories that have nothing to do with dialysis but, rather, have everything to do with loneliness or rage or disappointment in the way their lives have gone.  Others just give truncated versions of their stories, but you can tell there is more to it..  Others still have not much to say other than the simple truth of their situations.

It is entirely up to you how much you wish to post on this forum.  Some people may not read all of a long post, but others most certainly will.  Some may even discover that they are feeling just as you do, or they may have some of the co-morbidities you've hinted at.  This forum is for YOU to use as YOU see fit.  You have no obligation to entertain us or to make us feel good or to ensure that we don't feel BAD.  We're tough.  We can take it.  You don't have to protect us from yourself.

The offer stands.

[Paul]

What is a "pipe" as opposed to a fistula?  We must use some other term here in the US.

Sorry, slang term probably only used in the clinic I use. The medical term is a "A tunneled catheter" or "venous catheter". In my case, yes a chest catheter however other people have them elsewhere on the body.

It is entirely up to you how much you wish to post on this forum...........

Oh you may one day regret saying that, and other members may come to hate you for it.

[kristina]

Is there any possibility that you could apply - through your council - for a place in a Housing Trust ?

As an absolute last resort. That is where they put sick old people while they wait for them to die.

I think it was Samuel Johnson who said : a person who is tired of London is tired of life.

One of my favourite quotes, but I do not include the outer boroughs in that.

Hello again Paul and thanks for answering my question.
I just wanted to add that Housing Trusts would not like to be regarded as an absolute last resort. Many Housing Trusts were set up in London to provide affordable accommodation for people in need of housing, mainly around 1917 by people like Mr. Sutton or Mr. Samuel Lewis and his wife. She was passionate to set up Housing Trusts in 1917 for single mothers where they had their one or two bedroom flats to pay reasonable rent whilst bringing up their child.
These days the Housing Trusts are often connected to the Council and it might be a good idea to find out about such a possibility from your Council? You could be put on an urgent waiting-list in another district because living in such circumstances as you are now, could that not be detrimental to your health? Please give it a try!
I wish you good luck and send you my best wishes from Kristina.

[MooseMom]

It is entirely up to you how much you wish to post on this forum...........

Oh you may one day regret saying that, and other members may come to hate you for it.

If you were to post something the moderators considered to be inappropriate, they would probably PM you and deal with your post accordingly.

It is up to individual members to decide which posts are worth their time to read.  But if you are truly worried about the effect a more complete introduction might have on other members, then I will just trust your good judgment.