Hi there !

[Litegirl]

First of all I am pleased to be accepted to the forum. I wish everyone a very Merry Christmas and a Happy New Year. I am 40y.o. female from Germany. Previously I had 6 years of HD. Last year I got a kidney from my mother, bless her . I am having problems with my immunosuppression drugs - shortness of breath and burning feeling in the bronchi on Prograf, Sandimmune. Now I am switched to Rapamune. It's a bit better, if I may call so a big tightness in chest. But I definitely cannot function normally when I feel my chest very heavy and when I suffer scratching and burning sensation in the bronchi.

So I would like to communicate with people here and search for some information about different immunosuppression regimens.  It was very interested for me to read a story of a man who's under nickname "openboat".. He was taking part in a clinical trial which included Sirolimus and Belatacept. The initial plan was aiming to wean off the drugs in 6 or some more months later.  There is a similar trial in Germany as well, but I didn't know anything about immunosuppression before my kidney transplant surgery was done. Now I am too late to be included in the trial because I was transplanted already.
 
I have not found any recent inputs from openboat  though. I would like to talk to him if it's possible. Does anyone know how's everything going to him? Hope he is doing well.

[kristina]

Hello Litegirl,

and welcome to IHD !

I am still pre-dialysis and never had any kidney transplant,
but I study as much as I possibly can - as an ESRF patient - about medical research-results
... which is a bit difficult sometimes, because I am not medically trained...

I have read about such trials on the Continent, especially the one’s performed at the Charité Hospital in Berlin
and some others in Paris Pitié-Salpêtrière Hospital (? not sure anymore which Hospital it was) and in Florence...
but I have not come across any positive medical results yet...

I do hope you find a way to deal with your drug-intolerance to the immunosuppressant
and I do wish you the best of luck in succeeding.

Kind regards from Kristina.

[Litegirl]

Hi Kristina,

Thank you for your lovely wishes. As far as I know Massachusetts General Hospital was quite successful in immunosuppression free kidney transplant regimens
http://thirdcenturyofmedicine.org/#

If you are interested in clinical trials as well, you may have a look here as well  http://www.nature.com/news/drug-free-organ-transplants-without-tissue-matching-1.10188
and here http://www.northwestern.edu/newscenter/stories/2012/03/kidney-transplant-leventhal.html

Thank you for the information about the trials in the Charité Clinic in Berlin and some of those in Paris and in Florence. Have not found anything about Berlin so far.

[noahvale]

^

[Bambino_Bear]

 

[kporter85db]

  We're glad you're here. 

[Litegirl]

Litegirl - have you checked out the Immune Tolerance Network?  (http://www.immunetolerance.org/public/transplantation)

Thank you for a link !

[Litegirl]

Hi there ! I wish you a successful kidney transplant surgery ! Happy New Year to you both !

[Litegirl]

We're glad you're here. 

Hi Ken. Thank you for your warm welcoming  Nice to meet you too ! I wish you a Happy New Year.

[kristina]

Thanks Litegirl and noahvale for your kind information.

I read Nephro-Magazines and/or medical magazines whenever I get a chance and I believe it was mentioned there...

... I am not particularly interested in medical trials as such (I could not take part in any,
because I suffer from severe drug intolerance and allergies to all sorts of medicines...)...

... I also suffer from chronic proliferative glomerulonephritis (“responsible” for my pre-dialysis ESRF)...

... and I suffer from Systemic Lupus Erythematosus (SLE), Mixed Connective Tissue Disease (MCTD),
Vasculitis, Antiphospholipid Syndrome, Sjoegren’s Syndrome and Sicca Syndrome...

...any of these may give me a flare-up at any time, which always cause immunological disturbances
“attacking wrongly”  one of my organs through these flare-ups;

... because of my drug-intolerance, my body has reacted allergic to all possible immunological treatments/medicines
whenever I suffered an SLE/MCTD flare-up ... and that is one of the reasons for my great interest in all medical research results
connected with immunological allergies/rejections and drug-intolerance...

Best wishes and good luck from Kristina.

[Poppylicious]

Hi Litegirl and !

I don't know openboat so I can't tell you anything about how he's doing now, but I imagine somebody will be able to!

Lovely to 'meet' you.

Poppylicious, Moderator

[Litegirl]

Sjoegren’s Syndrome and Sicca Syndrome...
... because of my drug-intolerance, my body has reacted allergic to all possible immunological treatments/medicines
whenever I suffered an SLE/MCTD flare-up ... and that is one of the reasons for my great interest in all medical research results
connected with immunological allergies/rejections and drug-intolerance...

I am so sorry to read about your drug-intolerance and allergic reactions, Kristina. It sounds really complicated. How are you coping with your medications? Do you take any for your conditions?
I hope you would never need a kidney transplant. My best wishes to you as well. It seems to me it's too late for me to take a part in any clinical trial because I was transplanted already.
Shame I didn't know about those possibilities before my surgery was done. Now I just hope my body can adjust to Sirolimus. If not, my clinic want to try Belatacept infusions monthly.
First of all I have to get a consent of my medical insurance company for that. Hope they would fund the drug and treatment in case I need them.

Kristina, is Sjoegren’s Syndrome not the same condition as Sicca Syndrome? Surely I don't know, I am just asking. Hope you are feeling well.

[Litegirl]

Hi Poppylicious.

Nice to meet you too  I will have a look if openboat set up a permission in his forum profile to contact him via email . That would help

[okarol]

It looks like openboat has not been active on the forum in 3 years, but you can try sending him a PM.
http://ihatedialysis.com/forum/index.php?action=profile;u=41224

[Litegirl]

Thanks, okarol! Just sent him  a PM here on the forum.  We'll see if he replies.

[kristina]

Hello Litegirl and thanks for your kind wishes.

Sorry to answer so late but I am currently battling with a flu and I do hope my “two little fighters” are not getting over challenged...

... here are my answers: I am not on any ESRF-medication and/or on any SLE/MCTD medication, because of my drug-intolerance and allergies...
The only medication my body is able to tolerate is my antihypertensive Amlodipine/Istin 5 mg per day...

I do hope your body can soon adjust to your own medication without any further drug-intolerance complications....

... Sicca Syndrome involves mainly dry eyes, a dry mouth, dry skin and an allergy to artificial fibres/colours.
To protect my skin from possible allergies, I avoid direct contact with such fibres. Sjoegren’s Syndrome also involves all of the Sicca-Syndrome-Symptoms
and “goes a little further” by probably involving arthritis as well... Sjoegren’s and Sicca Syndrome are very difficult to diagnose
and when the Dept. of Health became exasperated with my constant complaints and letters, they “took matters into their own hands”
and assisted me to get diagnosed by medical professionals... who were not on the NHS...

NHS doctors in London were not able to diagnose me with any of “my” diseases, even though I have always remained to be
a very slim vegetarian, very fit, not drinking any alcohol, conducting a regular life-style etc. and I have always made sure
to express my symptoms well to doctors ... I even made a point to write down all my symptoms before consulting with NHS doctors,
but all my efforts did not matter... NHS doctors did not assist me to get a diagnosis for any of my symptoms...
... and NHS doctors were also not able to diagnose my presenting the (typical) symptoms before I suffered two cerebral haemorrhages
and therefore they did not treat my very high blood pressure beforehand to avoid such a catastrophy...
NHS doctors also never diagnosed my suffering from chron. osteomyelitis even though my ankle was almost black after “my” fracture ...
and NHS doctors never diagnosed my typical symptoms of Ischaemic Attacks before I suffered a severe stroke ...
... and they never even assisted me to receive rehabilitation after the stroke... all that had to be sorted out with the help
of the Dept. of Health... I was also finally diagnosed –  again with the help of the Dept. of Health with all "my" above mentioned diseases...
and finally in 1995 with the added Systemic Lupus (SLE) and in 2003 with Mixed Connective Tissue Disease (MCTD) ...
 
Unfortunately, the Dept. of Health does no longer offer such assistance to NHS-victims and Heaven help all these NHS-victims now,
becausse no longer can any Department (or lawyer) be approached for practical help by any victim  of the NHS health system... 

... My Odyssey over many years as a victim of theNHS health system taught me, that a “free” health system like the NHS
does not necessarily provide a good quality professional health care for everyone ...

If I really need a very good quality health care by professional medics with real medical integrity, I have to pay cash ...
... and the more cash I am able to pay the better and longer-lasting the health service I receive...
... the same goes for my dental care as well...
That – of course - causes me another serious problem:  I cannot afford the NHS Health System because of my fragile health,
especially after all my traumatic and horrid NHS-experiences... and also, because I have serious doubts that I would be given a chance to survive on the NHS...
... and I certainly cannot afford private health care because of my serious lack of funds ...
This continuous conflict has taught me to become a highly skilled high-wire performer, practically walking on “a high wire in the air” ...
whilst battling with my poor health ... paying cash for all my blood test ... and any other health tests/treatments I need ... and trying to survive...
 ... all at the same time...

... I did mention the Charité in Berlin because I remember reading about a medical trial which involved a desperate SLE/MCTD-patient
who also suffered intolerably from drug-intolerance... this trial went miserably wrong and she died during the trial...

... I do hope, “Openboat” is doing well and answers your letter soon... as soon as I find out about any similar trials I shall let you know...

Good luck from Kristina.

[Litegirl]

Hello Kristina,
I’m also very sorry for a late reply. I’ve been at the hospital. Not feeling well because of my side effects from immunosuppressive and other types of drugs.
Feeling week and exhausted .

How are you doing? Hope you are fine after the flu. I see now the difference between your diseases. Thank you very much for explaining me that.  I am glad to hear you can tolerate Amlodine/Istin. I have horrible headaches after taking it.
The NHS approach to your diagnosing and rehabilitation after the stroke was absolutely appallig. I am really very sorry to read about your ordeal with NHS and two cerebral haemorrages.
By now I am very well acquainted  with appalling and self-interested NHS and German medical care culture.
I had a misfortune to be a victim of the NHS myself. So I can relate to some of your ordeals. I am speaking about  your traumatic and horrid NHS-experiences and  continuous conflict with the NHS.
As you say let Heaven help me, you  and other victims of the NHS system. Here in continental Europe I have to go through some difficult experiences with medical system as well unfortunately.

I have not heard back from Openboat and another person on the forum who is named Just Me. Just Me also was taking a part in the clinical trial with immunosuppressive drugs taken after kidney transplant surgery.
I even don’t know what to think why they have not replied and why they both have not been on the forum for a very long time.  Hope everything is fine with them both.

That’s very sad to read about unsuccessful outcome of the clinical trial with the drug-allergy sufferer in Berlin . Having read your message I am not so careless and lighthearted about any clinical trial, Kristina.
Thank you very much for sharing your experiences with the NHS .

I do hope you are doing well. As for me, I just don’t know what to do at the moment.

[kristina]

Hello Litegirl,
I am so glad that you are out of hospital and I do hope you have a chance to recover soon...
....I am sorry but not surprised about your experiences on the NHS... I have met and talked to so many NHS victims that nothing surprises me anymore...

I am at the moment trying to recover from another ghastly NHS experience:  When I was diagnosed with ESRF in August 2006 I was prescribed
”as a precaution”  a huge amount of Calcium and Vitamin B supplements to take daily “to save the function of my kidneys for as long as possible...”
It was a repeat prescription and came automatically... it was never medically checked by the NHS anymore...
... I believed that it was only a precaution and not a medication as such...
... I developed a very painful kidney stone and very nasty symptoms of hypercalcemia...
...my good luck was that I ate  every day a portion of salad with lots of cider vinegar and I also felt I needed a needed a little bit of lemon with honey in my drinking water...
... .it must have been my instinct “kicking in” to protect me... because, as soon as I  began to feel a little better I could not take cider vinegar or lemon any longer...
Of course, I needed an expensive CT-scan plus and expensive Ultrasound plus the interpretation of an expensive medical specialist to have this mess looked at...
 ...my best “surviving assistance”  was my instinct and I do hope I can rely on it for much longer...
.... hopefully my “two little fighters” have a chance to recover again from this ghastly experience...

... Unfortunately there are hardly any indigenous medics/specialist//nurses within the NHS system anymore...
 ... many NHS nurses/doctors/specialists working in the UK come from all over the world and “just do a job here”
...  and send their income to assist their families in their homeland...
some are hardly able to understand the English language... or any other European language...
... and some NHS nurses/medics/specialists care mainly for members of their own community/ religion...

Mind you, the same problem has spread all over Europe, including Germany, Italy, Spain, France etc... 
... many people in the UK suspect (and say it on the radio) that the UK has become a ground for medical experiments on unsuspecting NHS patients...
many NHS patients are too weak to protest or “take to the barricades” and healthy people are always sure it could never happen to them...
... until it does happen and then it is often too late...

Much of the country and many of the houses have become flooded at the moment... our government is very busy talking about it ... as usual...
... they try to get the army in to assist flooded people... unfortunately there is not much money to assist victims in those flooded areas...
... I have heard it said on the radio that the debt the government has caused the UK to get into is quite enormous...
... one economical specialist mentioned on the radio that the dept of the UK comes nationwide to several hundred English Pounds per person every year... in interest alone...

I do hope you have better luck in Germany. I have read that there are two specialized University centres in Duesseldorf and Kiel
to treat autoimmune problems, autoimmune diseases and drug intolerance...
I am so glad that you want to be more careful in the future about clinical medical trials because being desperate could lead you to make mistakes...
... much better to do your research first...

...  if I can be of any help, please don’t hesitate to contact me...

Best wishes and good luck again from Kristina.

[Poppylicious]

And just to give a different slant on things ... No, the NHS aren't perfect, but without the NHS I doubt my Blokey would be here today. I am grateful for having the NHS and will fight to retain it - and defend it. The positive experiences we've had far outweigh the negative ones (not just kidney related but throughout life).

I had a misfortune to be a victim of the NHS myself.

Sorry to hear that, Litegirl.

[kristina]

                   Facts are stubborn things and if you shut up truth and bury it under the ground,
it will but grow, and gather to itself such explosive power that the day it bursts through it will blow up everything in its way.

                                                             EMILE ZOLA