New site, not to disease

[Nettex]

I'll start by saying I'm glad to be a part of this community! I have to admit I was a little apprehensive at first. However, I checked out what going on and decided this might be a good place for me.  It will probably be evident that I don't usually subscribe to forum sites. So bare with me please. 

A little about myself: I am a married mother of two. I am currently a supporting teacher.  What does that mean?  Well I taught for twelve yrs. until I was told I would need dialysis and my health was declining.  So recently after  4 yrs of a long sabbatical, I'm easing my way back into education by volunteering and short term teaching opportunities. 

I am very close to and supportive of my immediate family. I have a 19 year old son who is studying abroad who I'm so proud of. My 9 yr. old daughter is my mini-me and I'm enjoying the time I spend with her. My marriage has lasted 20 yrs to a man I can truly say is my soulmate. (ikr? A little cliche but o so true!) My family, God and career are what make me complete. On the outside things seem sane and simple.   

Now let me talk about the inside.  Not so easy. I was diagnosed with lupus at the age of 14.  This diagnosis was devastating at the time not only because I was so young, but also because the disease was not very well known at the time.  I did pretty well with treatment.  Things changed several years later with my first pregnancy.  Pregnancy tends to escalate the severity of Lupus.  When this happened, I became very sick and so began the decline of my kidney function.  I was fine for a few years afterward until about 1998 when my kidneys completely shut down and I started dialysis. I was fortunate enough to get a transplant the following year. Then 8 years later I was back on dialysis.  The second time has been a lot more difficult for me to deal with although I'm hanging in there. The saga continues...

[justjen321]

Welcome.

I'm new here too, but have been reading forever. There appears to be a veritable wealth of information, and lots of support.

Jen

[willowtreewren]

 

Nettex!

What kind of dialysis are you doing? There are many options available now. Yep, it can be a hard road, but we are here with you!

Aleta

[kristina]

Hello, Nettex and welcome to IHD.

I also suffer from Lupus (SLE & MCTD) and rare components like Vasculitis, Sjoegren’s,
Sicca, chron. proliferative Glomerulonephritis, drug-intolerance, allergies, photosensitivity, Hypertension...
..and I have probably suffered from SLE/MCTD all my life.

I was only diagnosed (by chance) with Lupus in 1995 and MCTD etc. in 2003
...and I was informed at the time that in my case it is genetically inherited.
My genetic mother died shortly after my birth...

My kidneys first failed in 1971 (uraemia & coma) and with lots of luck and a strict discipline
I kept my kidneys going and with a strict vegetarian diet and lots of luck
my kidney-function recovered again to 40-45%...
(no Dialysis, but I was put on the transplant-waiting-list at the time)...

 ...until August 2006, when again I was diagnosed with ESRF & only 6 months to go until Dialysis.
(The decline of my kidney-function is due to an undiagnosed/untreated SLE/MCTD-flare-up)...

“My” SLE/MCTD-flare-up remains untreated and I was informed by letter from a doctor
of my NHS-health authority (PCT) that no specialist in London or in the UK can be found to assist me medically...

...Because of my reduced circumstances I have no chance to pay any other doctor/specialist in any other country.

Fortunately there is the Internet and IHD and with the help of the Internet and IHD
I was able refine my vegetarian diet further, and it keeps my kidneys (~10-12.3% function) still going, I am still pre-Dialysis...

My hope is that “my” SLE/MCTD-flare-up will decline eventually and give my kidneys and my body
another chance to recover again, if that is still possible...

Lupus is a very strange disease and, living in London, I had no luck to meet a competent NHS-GP/specialist
who was able to diagnose, assist and/or treat me medically...
 
That is why I suffered in the past cerebral haemorrhages, chron. osteomyelitis, a severe stroke and now ESRF.

Of course, there is a very well known NHS-Lupus-Centre in Central London,
but all the Lupus/SLE-patients I have met over the years who were registered at this NHS-Lupus-Centre,
are not alive anymore....I find that very odd and it made me think ...

I am without any medical assistance, but I do my own research on the Internet
and the Internet also helps me to decipher my Creatinine/Urea/Sodium/Potassium-blood-test-results.
(I do have to save-up money to pay for my blood-tests).

My question is this: how do other SLE/MCTD patients deal with ESRF  and how are they medically treated by doctors/specialists ?

Are there doctors to assist SLE/MCTD-patients medically or is there only research/medical experimentation done and only the lucky patients survive ?

Or is there a definite treatment? Are there any doctors who have an answer as how to treat ESRF-Lupus/MCTD-patients?

Do you also suffer from drug-intolerance/allergies to medication, photosensitivity etc. as I do?

I do apologize if I have asked you so many questions and I do send you my kind wishes

from Kristina. 

[billybags]

  To the site Nettex, glad to have you.

[Poppylicious]

  Nettex! Lovely to 'meet' you!

[lmunchkin]

Hi & Welcome Nettex.  So glad you found us!  Ask away and someone will answer! Tremendous support here.

lmunchkin