hi from UK jim

[jemmans]

 
 
Single man never married was planning to get married on May 10th to Filippino girl called Mae, but the illness has put a stop to the relationship, it was a mountain to climb anyway so that is all off now   

Due for dialysis soon and was recently diagnosed with CKD. I was a healthy man of 45 getting ready for a 'drug trail' when they discovered I was not a suitable subject. So you can see this is all new to me. Currently learning how to reduce K in the diet, (not to be confused with vitamin K; that is fatal mistake!). Life has changed quite a bit for me.

Is it better to reply by modifying the original message? or is that confusing?   I wanted to say this:

Well I live in the London leafy suburbs and went to do a drug trial with a Swiss company that uses the company name of "trial4us"  They invited me for trial at the Mayday Hospital in Croydon.
 Why did I do this risk taking activity? Well I always was a bit of a worrier about my health and I new they do a very detailed check up for free. The drug trial was concerning a drug already on the market for a common illness, they where just modifying it. I made that call, asking for if I was chosen to do the trial, they gave me the news nobody would ever expect.
Out of interest they emailed me this week asking for people with fungal infection of the toe nails, they need you urgently!!   


How did I get CKD???

Well my ultra scan showed one kidney was abnormally small, so the doctors assume it is not working and may have been like that since birth? or an injury? Although I was never involved in a serious accident, it is a mystery. 
They did a biopsy that went very well and the even looked at the cells under an electron microscope. But they could not see what happened to me. They did not rule out genetic illness.
Out of interest, kidneys normally are different sizes.

[Dannyboy]

Welcome Jemmans.
 

Getting a surprise like learning you have CKD is not pleasant, but here on IHD you'll find lots and lots of caring, knowledgeable folks who have a wide range of experiences with CKD, some pre-Dialysis like me right now, others with experience with Dialysis for many years.

This is a great place to learn about CKD, what might be done to slow it down, and also info on the various modes of Dialysis.     

---Dan

[kristina]

Hello, Jim,

and welcome to IHD. 

You say you were getting ready for a “drug-trial”
and “they” discovered you were not a suitable subject?
Could you please tell us more about it? It sounds so fantastic...

Where in the UK are you?
I live in Central-London and I am also pre-Dialysis.

Kind regards and welcome again from Kristina.

[willowtreewren]

Hi, Jim!

 

Yes, do tell us about the drug trial you were going to do.

You'll be able to learn so much about your condition here. Knowledge is power!

Aleta

[MooseMom]

Whereabouts in the UK are you?  I lived over there for 18 years.  If I'm able to ever get a transplant, the first thing I'm going to do is return to England for a visit!  My avatar is of an English bluebell wood that I lived close to.

Oh yeah, I'm sure life is gonna be quite different for you; must feel like the world has turned on its axis.  Well, we all know what that feels like, so I know we can help you if you need us.  I'm glad you've joined us and trust we can support you.

Do you know what has caused your kidneys to go pear-shaped?

[jemmans]

Well I live in the London leafy suburbs and went to do a drug trial with a Swiss company that uses the company name of "trial4us"  They invited me for trial at the Mayday Hospital in Croydon.
 Why did I do this risk taking activity? Well I always was a bit of a worrier about my health and I new they do a very detailed check up for free. The drug trial was concerning a drug already on the market for a common illness, they where just modifying it. I made that call, asking for if I was chosen to do the trial, they gave me the news nobody would ever expect.
Out of interest they emailed me this week asking for people with fungal infection of the toe nails, they need you urgently!!   

[MooseMom]

Well I live in the London leafy suburbs and went to do a drug trial with a Swiss company that uses the company name of "trial4us"  They invited me for trial at the Mayday Hospital in Croydon.
Out of interest they emailed me this week asking for people with fungal infection of the toe nails, they need you urgently!!   

OMG, my son was born in Mayday!!!  I lived in Sanderstead.  Are you anywhere near there?

Do you have dodgy toe nails?

[jemmans]

OMG, my son was born in Mayday!!!  I lived in Sanderstead.  Are you anywhere near there?

unfortunately I have perfect feet, just spent time in the Philippines and they really like english feet, did you know english feet are different shape to their feet?  The reason is we develop narrow feet due to wearing shoes in our cold climate! 

Sanderstead must be one of the many places around London I dont know of. I am from sunbury on Thames Walton weybridge area.

[jemmans]

Kind regards and welcome again from Kristina


I feel welcome here, thanks for warm welcome kristina, and others..  Jim

[MooseMom]

OMG, my son was born in Mayday!!!  I lived in Sanderstead.  Are you anywhere near there?

unfortunately I have perfect feet, just spent time in the Philippines and they really like english feet, did you know english feet are different shape to their feet?  The reason is we develop narrow feet due to wearing shoes in our cold climate! 

Sanderstead must be one of the many places around London I dont know of. I am from sunbury on Thames Walton weybridge area.

No, I did not know that about English feet, but I do now!

I don't know Weybridge well, but I know where it is.  Sanderstead is south of south Croydon.  It's a nice part of London, unlike Croydon.

[jemmans]

I don't know Weybridge well, but I know where it is.  Sanderstead is south of south Croydon.  It's a nice part of London, unlike Croydon.



Must be near Epsom my renal unit is St Helier, On Monday I will be going to Epsom where my sister and brother in law lives.  I better check the map. 

[AlasdairUK]

Hi Jim,

I go to St Georges, I had my TX there too + dialysis. As far as I know the St Georges trust covers St Heliers. St Georges has been the best unit for dialysis I have ever been to, so fingers crossed you have a positive experience.

All the best,
Al

[Ang]

 

[MooseMom]

Must be near Epsom my renal unit is St Helier, On Monday I will be going to Epsom where my sister and brother in law lives.  I better check the map.

I was admitted to Mayday in my 28th week of pregnancy because of pre-eclampsia.  The symptoms didn't go away after my son was born, so I was sent to St. Helier's for an initial consultation with a nephrologist.  St. Helier's is big and white and up on a hill, as I recall.

[kristina]

Hello again, Jim,

thanks for the information, it is very much appreciated.

I have never heard of “trial4us”, but I am aware of the Mayday Hospital
in the context of their medical-research/medical trials on NHS-patients.
I was warned about this by a Lupus-patient I am in contact with...
You see, many Lupus/SLE-MCTD-patients die so unexpectedly early
and it makes many people think...

I have not been to Sunbury yet, but I have visited places nearby such as Wentworth,
and Hampton Court is a wonderful palace with Jean Tijou’s Screen,
Lucas Cranach’s paintings, Titian’s wonderful art etc.,
and of course I have been to Twickenham and Heathrow.

Thanks again for the information and best wishes from Kristina.

P.S. Did they tell you about your pre-Dialysis kidney-function?

[billybags]

Hi Jim, first of all    to the site and welcome to the world of dialysis. We live in Nottingham not to far from you. You were very lucky or should I say, unlucky that your kidneys were picked up from the trial. Some people can go for years not knowing that they have problems, so being picked up early is a benefit. Lets hope things are not as bad as you think.

[Poppylicious]

  Jim, from another UKian (East Anglia).  It's lovely to 'meet' you; thank goodness you went for this medical trial and they gave you a thorough work-over. 

[jemmans]

Hello again, Jim,

thanks for the information, it is very much appreciated.

I have never heard of “trial4us”, but I am aware of the Mayday Hospital
in the context of their medical-research/medical trials on NHS-patients.
I was warned about this by a Lupus-patient I am in contact with...
You see, many Lupus/SLE-MCTD-patients die so unexpectedly early
and it makes many people think...

I have not been to Sunbury yet, but I have visited places nearby such as Wentworth,
and Hampton Court is a wonderful palace with Jean Tijou’s Screen,
Lucas Cranach’s paintings, Titian’s wonderful art etc.,
and of course I have been to Twickenham and Heathrow.

Thanks again for the information and best wishes from Kristina.

P.S. Did they tell you about your pre-Dialysis kidney-function?

They said I had 25% function and sent letter to my doctor, I am now down to 15% in quite a short time (5 months).  Who are Lupus/SLE-MCTD patients? not heard of those terms before.

[jemmans]

Hi Jim, first of all    to the site and welcome to the world of dialysis. We live in Nottingham not to far from you. You were very lucky or should I say, unlucky that your kidneys were picked up from the trial. Some people can go for years not knowing that they have problems, so being picked up early is a benefit. Lets hope things are not as bad as you think.

Agree with you, it was a very good thing to find out what would have happened to me, for sure my case could have ended up in emergency ICU. Now is the luxury of going through the process of learning and physiologically adjusting.     

[jemmans]

Jim, from another UKian (East Anglia).  It's lovely to 'meet' you; thank goodness you went for this medical trial and they gave you a thorough work-over.

Meeting of sorts, I would have liked to post my profile pic as well, but looks like I am not allowed yet     Yes one thing about drug trials is they work very hard getting healthy subjects, partly to get the most accurate results and also avoid legal problems that would result if a health issue was missed and it caused injury.

[kristina]

Hello again, Jim,

thanks for the information.

I do hope your kidneys function for a long time to come.
(Mine have been functioning pre-Dialysis on 10-12%
for almost 2½ years and I do hope, they continue much longer.)
 
You ask about Lupus/SLE/MCTD:
Lupus/SLE/MCTD are autoimmune diseases which cause many symptoms
and if they attack major organs in a flare-up, it can be life dangerous.
With me it seems my kidneys are particularly vulnerable to attack.

Lupus is a basic diagnosis but it can be systemic
and then it is referred to as Systemic Lupus Erythematosus (SLE),
and if it is diagnosed that a patient has many types of autoimmune diseases,
it is referred to as Mixed Connective Tissue Disease (MCTD).

I have been diagnosed with MCTD, which means, I have several types of autoimmune diseases
which include SLE and other diseases like Vasculitis, Antiphospholipid Syndrome,
Sjoegren’s Syndrome and a variety of other less prominent autoimmune diseases.
 
In addition, a kidney biopsy taken many years ago diagnosed
that I also suffer from chronic proliferative glomerulonephritis with hypertension.

I do hope, your kidney-function remains pre-Dialysis for a long time
and I send you my best wishes, Kristina.

[jemmans]

Hello again, Jim,

thanks for the information.

I do hope your kidneys function for a long time to come.
(Mine have been functioning pre-Dialysis on 10-12%
for almost 2½ years and I do hope, they continue much longer.)
 
You ask about Lupus/SLE/MCTD:
Lupus/SLE/MCTD are autoimmune diseases which cause many symptoms
and if they attack major organs in a flare-up, it can be life dangerous.
With me it seems my kidneys are particularly vulnerable to attack.

Lupus is a basic diagnosis but it can be systemic
and then it is referred to as Systemic Lupus Erythematosus (SLE),
and if it is diagnosed that a patient has many types of autoimmune diseases,
it is referred to as Mixed Connective Tissue Disease (MCTD).

I have been diagnosed with MCTD, which means, I have several types of autoimmune diseases
which include SLE and other diseases like Vasculitis, Antiphospholipid Syndrome,
Sjoegren’s Syndrome and a variety of other less prominent autoimmune diseases.
 
In addition, a kidney biopsy taken many years ago diagnosed
that I also suffer from chronic proliferative glomerulonephritis with hypertension.

I do hope, your kidney-function remains pre-Dialysis for a long time
and I send you my best wishes, Kristina.

Thanks for the detailed answer, my doctor thinks I may have a syndrome it could be a autoimmune disease but they have not made a positive ID yet.

If you are lasting so well on 10 - 12% that does give me hope for remaining at my stage for some time. My last test showed a result of 18% so that is a better result. My doctor said keep to the low potassium/ salt diet. This is what I am attempting but it is very difficult.

Thanks a lot Jim

[kristina]

Jim, I do hope you are lucky,

Best wishes from Kristina.