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Author Topic: Which sort of access at what place could be the least intrusive ?  (Read 5808 times)
kristina
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« on: February 22, 2014, 11:42:41 AM »

Hallo,
Last Monday I was told that it is time for me to consider dialysis ...
It did not come as a complete shock because loosing a very painful kidney stone in January 2014 left me very unwell
and I was battling against it ...since July 2013, but I, (or any doctor I went to) could not diagnose what went wrong,
until I finally lost a very painful kidney stone January 2014...
this excruciatingly painful kidney stone could develop because since August 2006 I was prescribed by automatic NHS repeat prescription very high dosages of a chewable calcium carbonate/colecalciferol medication with the equivalent of 500mg Calcium twice every day, plus 0.5 microgram alfacalcidol capsules daily as a „precaution to preserve my kidney function“ ... Of course, it had the reverse effect and from July 2013 until December 2013 I deteriorated and at the end of January 2014 I became very unwell, fragile and had developed many terrible symptoms, culminating finally in loosing a very painful kidney stone whilst  at home... Fortunately I had stopped taking these medications completely in December 2013 and had cut it down already in summer 2013 to only 50% of the huge daily dosage of this supposed preventative medication,
but the damage to my "two little fighters" had already been done ...
Because of my drug-intolerance and very fragile kidneys I could not even take any painkillers during that terrible experience...
No doctor had ever warned me of any dangers of these „precautions to preserve my kidney function“,
and whenever I consulted with any of them to get a diagnosis... there were no answers....
It was quite surprising that I managed to survive this experience...so far...
The CT scan and ultrasound showed no further kidney stones ...or any other stones...
... After I realized what had happened, I tried ever so hard to loose some of "my" calcium-overload in a most natural way...
...but the damage to my „two little fighters“ had already been done...
I have also tried to recover, but I had deteriorated so rapidly and so has my kidney function (now only 6,5% function, no symptoms at all, blood pressure still very well controlled and stable at 120/70)...but unfortunately the kidney stone and the resulting pain have caused my Creatinine and Urea (Bun) to have gone dangerously high...
Fortunately there is no swelling, no water retention and I still visit the bathroom „as normal“ and sleep well at night... hardly any symptoms, except my exhaustion...
...My struggle with this kidney stone has made me to loose weight (I weigh now only 52.2kg) and I have become fragile and weak...
...Of course I try ever so hard to do my best and get better to get some more of my former kidney function back
and I exercise a little gymnastics every morning,  keep strictly to my vegetarian kidney friendly diet
and I go every evening for a little walk „round the block“ ...
I already feel a little bit stronger and hopefully I shall be able to recover a little from this terrible kidney-stone-experience...

But I really have to prepare myself for the worst and I am wondering, which dialysis would be the most advantageous for me:
Dialysis Centres are not possible for me, because of my photosensitivity and drug-intolerance to many medicines plus many other allergies... Peritoneal Dialysis is not possible because of my many allergies, drug-intolerance etc...
...and there is not even a chance for me to hope for a transplant because of my drug-intolerance  to most medicines,
plus my many different allergies plus my medical history and the fact that I suffer not only from kidney failure
caused by chronic proliferative Glomerulonephritis & resulting Hypertension, but also from Systemic Lupus (SLE), 
Mixed Connective Tissue Disease (SLE), Vasculitis, Antiphospholipid Syndrome, Sjoegren’s- and Sicca Syndrome and severe Photosensitivity...

...it is highly unlikely that I would be able to take any medications after a transplant and because of that
I would not even have a chance to be considered for any transplant list... anywhere...

My question is this:
What is the best method for NX stage-access causing the least number of problems?
What is the operation composed of?
( I am allergic to all common anaesthetics, only the equivalent of a child’s dosage of inhaling a small amount of a certain gas is possible
and permissible in my case)...

I also have to be careful about operations because of my unfortunate health history
(i.e. two cerebral haemorrhages which had to be repaired
n two different very lengthy operations...ten years later a massive stroke which left me half-sided paralyzed for a long time, 
unable to speak and unable to look after myself ... and it took me many years of strict daily rehabilitation to recover reasonable again...
...and my medical history left my body rather fragile, especially because of „my“ regular SLE- and MCTD flare-ups...
... any operation has to be approached very carefully because of my medical history...
 
Which sort of access at what place could be the most advantageous and the least intrusive for me?

Has anyone had any adverse reactions or allergies to NX stage access?

Thank you for the information and kind regards from Kristina.
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obsidianom
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« Reply #1 on: February 22, 2014, 12:31:56 PM »

If you have decent veins and arteries then a radio-cephalic fistula in the lower arm would be the first choice. It isnt a terribly big surgery and can be done with a good local block for anesthetic.  Or it could be done higher up the arm if the vessels at the forarm arent capable of maturing.
You have a lot going on but with a good vascular surgeon it can be doen and work quite well.
You actually have a lot of the same issues my wife has including the auto immune issues and hypercalcemia and she was told originally that a fistula may not work due to small veins. We found a great vascular surgeon and in 2 surgeries he created a nice wide AV /radio-cephalic fistula . It works great on Nxstage.
You could start with a catheter but you would be at risk of infection and with your medication issues that would be dangerous.   
Get the fistula going ASAP as it will need a few months to fully mature. 
If you have any other questions , please ask.  I know it sounds scary but we can all talk you through it here.

The actual operation to create a fistula is quite simple. The artery is attached to the vein after the skin is incised to visualize the vessels. Then the 2 are attched near the wrist either by side to side or angled connection with stitches . Then you have to work the muscles in the arm to mature the fistula over a few weeks to months. The vein becomes larger over time as it matures and becomes usable for dialysis. You need to get enough blood flow to support  dialysis  . 
« Last Edit: February 22, 2014, 12:36:24 PM by obsidianom » Logged

My wife is the most important person in my life. Dialysis is an honor to do for her.
NxStage since June 2012 .
When not doing dialysis I am a physician ,for over 25 years now(not a nephrologist)

Any posting here should be used for informational purposes only . Talk to your own doctor about treatment decisions.
Jean
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« Reply #2 on: February 22, 2014, 01:04:04 PM »

Kristina, I am sorry, I have no advice, but I will surely remember you in my prayers. You are one tough cookie. Keep fighting!!
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kristina
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« Reply #3 on: February 22, 2014, 02:04:36 PM »

Thank you obsidianom for the information and your kind encouragement
and I am very sorry that your wife also suffers from auto immune issues...
very complicated and keeps me on my toes at all times because of impending flare-ups...
Fortunately my veins are decent and I shall try my  very best...

Thank you Jean, for your good wishes and kind thoughts... very much needed at this time,
because the kidney stone and excruciating pain were very frightening,
and I was getting concerned whether I might have another chance – or not... and I sometimes felt, my luck was running out...

I shall take obsidianom’s helpful explanations to my appointment next Friday with a nephrologist
who specializes particularly in dialysis and/or transplants ...

Thanks again from Kristina
« Last Edit: February 22, 2014, 02:30:28 PM by kristina » Logged

Bach was no pioneer; his style was not influenced by any past or contemporary century.
  He was completion and fulfillment in itself, like a meteor which follows its own path.
                                        -   Robert Schumann  -

                                          ...  Oportet Vivere ...
cassandra
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When all else fails run in circles, shout loudly

« Reply #4 on: February 22, 2014, 03:08:41 PM »

I agree with Obsi. The fistula surgery I've had at least twice (because of tiny veins) with just local anesthetic. The only allergic reaction I've had with Nxstage is asthma attacks due to the sterile gas in the dialyzer. TTL that's solved now by first 'tanking' the gas out before the start of treatment.

Lots of good luck, Cas
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I started out with nothing and I still have most of it left

1983 high proteinloss in urine, chemo, stroke,coma, dialysis
1984 double nephrectomy
1985 transplant from dad
1998 lost dads kidney, start PD
2003 peritineum burst, back to hemo
2012 start Nxstage home hemo
2020 start Gambro AK96

       still on waitinglist, still ok I think
MooseMom
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« Reply #5 on: February 22, 2014, 05:03:00 PM »

Oh Kristina, I know you and your two little fighters have been through so much, and I am hoping that you might still be able to avoid dialysis.  However, it's not a bad idea for you get an access ready and waiting.  Who knows, you might not ever have to use it.  I am thinking of you and am hoping you will keep us updated with what you decide to do.  You have always worked hard to keep yourself well informed and educated, so I know that you will take all of the data and will make a decision that works for you.  I know your health history is complicated, but I am confident that you will make a good choice.  We will help all we can!

Best regards, MM.
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noahvale
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« Reply #6 on: February 22, 2014, 07:15:11 PM »

^
« Last Edit: September 19, 2015, 06:57:35 AM by noahvale » Logged
obsidianom
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« Reply #7 on: February 23, 2014, 06:19:29 AM »

I agree with Noahvale on the vein mapping and need for the "best" vascular surgeon who can handle challenging cases. That is what we had to do.
The local vascular surgeon who I knew from years of sharing cases here in town professionally  was very negative toward creating a fistula for my wife. He didnt feel it would work. Thankfully I had a cousin who was a rheumatologist at a big out of state medical center and worked on the same floor as the nephrologists. He found us the best vascular surgeon there who did all the difficult cases. The first surgery created the fistula and after it matured but was small, he opened it up longitudinally and added a graft from another vein as a "patch " to widen it by more than double. After 2 months it was very wide and easy to access. We use it 5 times per week now on Nxstage.
My wife has tiny veins and abnormal anatomy in the vasculature so it was a ver challenging case. She had to have it in her right (dominant) arm as the left was even worse. So the moral of the story is GO TO THE BEST YOU CAN FIND.  It is your lifeline hopefully for years to come. We had top travel 150 miles each way for the surgeon and have made several visits and stayed overnight a few times there (2 states away) but it was well worth it.  Unlike dialysis it is worth going out of your home area for this procedure as sometimes the local surgeons arent as qualified. It is the single most important step to prepare for dialysis and will be something you will need to last for a long time. Doing it right initially will save a lot of trouble later.  So ask around and do some phone and internet searches for vascular surgeons who do a lot of fistulas. Dont let a general surgeon do it.
In case you dont know, vein mapping is a simple painless ultrasound imaging of the arteries and veins in the arm(or leg) . That lets the surgeon see the size and location of the vessels. Size is important as the veins particularly have to be large enough to eventually support the heavy flow required for dialysis. If I remember correctly the minimum size to start must be at least 2 mm. diameter for a vein. Also the surgeon can look at the health of the arteries to see if there is calcification and any potential blockages as the artery must "feed" the vein. The vein becomes the fistula as it becomes almost arterial after the surgery.
Maturation of the fistula involves the vein becoming larger in diameter and thicker walled over a period of weeks and months. It usually takes at least 2 months. Longer is better. This is Wolfs law. The anatomy will change in relation to the stresses put on it. In this case the increased flow from the artery into the vein directly puts a force on the vein causing it to enlarge and thicken just the way a muscle will when you lift weights.
I hope this isnt too much info. But going in with better understanding can help you pick the best options and surgeon.

You also asked about dialysis. I think Nxstage is an excellant choice if you are sensitive and have medical issues that are complex. It is more gentle on the body as you do it more frequently and with slower dialysate. It is a less harsh pulling of chemicals out of the body and ultra filtration (fliud removal) if required is done slower and less per treatment. This tends to reduce cramping and feeling as tired after. My wife as I wrote has similar issues to you and does much better on Nxstage 5 times per week then the 3 day standard treatment she started with long ago.

If you have more questions ask away. This hopefully will make you feel better about going into dialysis. All I can tell you is my wife was always feeling sick for months before dialysis and when we finally started she perked up the first session. It was like a miricle to see her back after being in a fog for weeks before. I was angry we hadnt started sooner. Dont go by numbers to decide when to start. Go by how you feel. 
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My wife is the most important person in my life. Dialysis is an honor to do for her.
NxStage since June 2012 .
When not doing dialysis I am a physician ,for over 25 years now(not a nephrologist)

Any posting here should be used for informational purposes only . Talk to your own doctor about treatment decisions.
kristina
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« Reply #8 on: February 23, 2014, 02:34:41 PM »

Hello again, and thank you very much for all the helpful thoughts and ideas, cassandra (fortunately I don’t suffer from asthma
and I am sorry what you had to go through)... thanks for your good wishes and encouragement MooseMom it is not only my experiences with some medics, but also the combination of my many rare diseases making it difficult for medics who might perhaps at first even have meant well... many of NHS medics for example have to work very fast, almost like factory workers in accord work (only 7 minutes per NHS patient) and it is impossible to listen to a patient with rare disease who is not medically trained... such short  allocated time is always detrimental for the patient with rare diseases... SLE and MCTD are often called „the secret lady killers“ because many patients don’t even realize when they suffer an SLE/MCTD flare-up and it cannot always be detected by blood tests and that is why so many die so very early...because it needs a doctor who believes them and is willing to help them despite the fact that flare-ups often cannot even be detected in the blood test...there is no cure and no real treatment for SLE/MCTD... and my drug-intolerance to most treatments has always prevented me from taking any medication for SLE or MCTD... thanks for the ideas for the important links to vain-mapping noahvale I shall study everything carefully and thanks for all the information again obsidianom. I also shall study all your information very carefully again...
It all has been very helpful and gave my some more „umpf“ to assist my "two little fighters" and perhaps find a way forward...
I do feel "my two little fighters" want to live as well...My kidneys and other organs (only my heart is normal size) have always been very small and tiny from when I was born and I was always told that my small kidneys are due to my kidney failure and chronic Proliferative Glomerulonephritis and I have tried to explain that I had small kidneys since I was born ... I would like to ask a few more questions:


May I be able to continue playing the piano ... and study new pieces? Might NHS stage dialysis influence the strengths of my hand or arms?

Apart from trying to go for as many walks as possible, I have started to learn with self-learn courses for beginners to rehabilitate on the piano and be able to move my arms and fingers again and get stronger after the stroke. Learning the piano also helped me to learn how to concentrate again....my right hand/fingers have become much stronger and my left hand has also become better and stronger again...
and my concentration has almost recovered completely again... not completely yet, but it certainly has become much better...

My Creatinine is now 672, Urea (Bun)  is 45.5 and potassium is 3.9 and Sodium is 132 and my weight is 52,2 kg with a height of 1.67... I am generally not too bad with my strengths and have always gone for lots of walks whenever possible and was originally trained in mountain climbing when I was a child... because I was so very tiny and my health was fragile ... I was constantly unwell as a child... Unfortunately I had to forget about mountain climbing up after the stroke... but it build up my strengths much better and assisted me to grow up...

How long would it take me before I would completely collapse with my failing kidneys?
 
I am asking because I shall try very hard to become a little bit stronger again and get my Urea a little lower again.
I shall try to go for as many walks as possible and have taken my light foldable mobile little seat with me
to have a chance and sit down immediately whenever I need it whilst going for a walk... this little seat is very practical
and helps me a lot...  it also takes the fear of „getting into trouble“ whilst going for a walk...
It also assists to hopefully get my Urea going down a little further and I drink 2,5 litres of liquid
i.e. hot  camomile tea every day until 6 o’clock in the evenings to stop me from getting up at night...

My kidneys first failed in Spring 1971 when I was found in a deep coma and brought to hospital by ambulance. Fortunately the doctors were fighting to assist me and did not put me on dialysis, but I was put on many different surviving drips during my coma which lasted for a very  long time... When I woke up naturally again a Professor took medical care of me and advised me on a very strict vegetarian diet which I have kept ever since: no alcohol, no smoking, no medication like pain-killers , no tin-food, no late nights, nothing artificial etc.
I also have baked my own (salt-less)  bread for many years and get all my food fresh from the weekly market from the farmers
(even in London)...

One year after my kidneys first failed I had a kidney biopsy taken and it was very dangerous
because the kidney was bleeding profusely for a long time ...
I had to be put on drips again I had to remaining in hospital for a long time to slowly recover again.. .

The biopsy was sent to a nephrologist who only specialized in diagnosing biopsies and he diagnosed chronic Proliferative Glomerulonephritis...
I was told I had to make sure in the future that I never ever have a kidney biopsy ever again...

The doctors even handed over to me a copy of the original  report of my diagnosis in 1972 stating clearly the I suffered chronic Proliferative Glomerulonephritis and I have kept this document ever since in a secure place together with all my other important documents
...and I  have shown this document to every nephrologist every since ...
... The problem was, that all  nephrologists insisted over the years again and again and again to on my permission to have another biopsy taken and I have always refused... always... always...
... I could not risk my life again only for another kidney biopsy, because I already had the diagnosis
and I had paid heavily for it with profuse bleeding of the kidney, needing some drips and a much longer stay in  hospital
plus constant medical care at all hours, because the proceedings of the biopsy had endangered my life already in 1972
when the only biopsy was ever taken...
... Unfortunately  my continued refusal lost  me the medical interest of each and every nephrologist ever since...
... but I need to live on... and so do my "two little fighters"... an I have always done my very best to protect and assist "my two little fighters"...

The question is now: How much time would I be given, before my kidneys would collapse completely as they did in 1971 ?
I need to get an idea because I shall fight tooth and toe to get many more exercises again (I was pretty immobile during this kidney stone episode over the last two months and I need to get on my feet again)...

...And I need lots of little walks every day again after this terrible kidney stone-episode and build-up of an overload plus "overkill" of calcium-intake every day since August 2006... But I am certainly was never a gambler and would not risk my life...

I drink during every day my 2,5 litres of camomile tea to help this great upheaval of my body calming down a little again ...
I feel I had such a terrible deal not only medically speaking but also with  the nature of all my very rare diseases,
that I really need to try and hopefully get something with my "two little fighters" going again ...

I thank you all very much again and kind regards from Kristina.

P.S. Sorry that this has become such a long letter, but I feel I had to explain a lot because "my" diseases are so rare and so very difficult to explain...
« Last Edit: February 23, 2014, 03:12:59 PM by kristina » Logged

Bach was no pioneer; his style was not influenced by any past or contemporary century.
  He was completion and fulfillment in itself, like a meteor which follows its own path.
                                        -   Robert Schumann  -

                                          ...  Oportet Vivere ...
obsidianom
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« Reply #9 on: February 24, 2014, 02:24:46 AM »

Have the doctors tries immunosupressive therapy for the glomerulonephritis/SLE ? 
Blood pressure control is the most important treatment to help hold on to your kidneys as long as possible.
Unfortunatly there is no way to predict the course of kidney failure. You are doing a lot to help yourself but with any chronic sisease it is impossible to know where it will go and when . Just keep fighting as you are and watch your blood pressure.
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My wife is the most important person in my life. Dialysis is an honor to do for her.
NxStage since June 2012 .
When not doing dialysis I am a physician ,for over 25 years now(not a nephrologist)

Any posting here should be used for informational purposes only . Talk to your own doctor about treatment decisions.
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« Reply #10 on: February 24, 2014, 10:04:46 AM »

Had my radio-cephalic fistula installed under conscious sedation (I think Fentanyl+Versed); required a second procedure to tie off some veins that were preventing it from maturing, but it works great and is easy to self canulate.
« Last Edit: February 26, 2014, 10:47:11 AM by Simon Dog » Logged
kristina
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« Reply #11 on: February 26, 2014, 07:07:53 AM »

Hello again obsidianom and hello Simon Dog and thanks for all the good information...

I have printed it and take it with me to my appointment with another nephrologist this afternoon...

Thanks Simon for the information about your radio-cephalic fistula,
 ...I shall get an opinion of the nephrologist and try to find out,
how long I may continue to keep my two „little fighters“ functioning ...

...Unfortunately I had to find another nephrologist, because the original appointment on Friday morning 8 am,
where I would have to get up at 5 am to be ready in time to travel & arrive at 8 am had to be cancelled...
... the nephrologist suddenly asked for £ 350 British Pounds (1 British Pound is currently 1.67 US Dollars....) payment (cash) for my very first consultation (lasting 45 minutes)
on Friday morning 8 am, plus another £ 1000 (English Pounds) for the necessary blood tests at his surgery,
...plus another £ 350 (English Pounds) for his opinion about my blood tests (another 45 minutes).
...He did not even need to be informed about anything beforehand i.e. my health-history or any other medical information...
... to explain my situation I feel I I would need a little more time...It occurred to me that there might be  a bit exploitation on desperate patients involved - added to that I would not even be able to afford it financially...
... it seems to border almost on „Creative Accountancy“ on his part... I have another appointment with another nephrologist who is much more reasonable financially and more reasonable with the time he gives patients and I just hope for the best...
obsidianom, many thanks for the encouragement and the mentioning of immunosuppressives...
I have  once tried some course of Retuximab infusions over many days together with infusions of Corticosteroid and it resulted in terrible SLE/MCTD flare-ups over the next few years, making me almost immobile...
... Other Immunosuppressants gave me constant  flare-ups with terrible side-effects every time and that was it...
...As a child I was given a medical emergency identity, stating that Penicillin would seriously endanger my life...

...Another point I should mention is that after my kidneys had recovered to 5% function after their first failure in 1971,
when I had recovered a little from the coma (which included already a very long time in hospital)),
the doctors allowed me to go back to my student accommodation and continue to prepare for my studies...
...the same doctors (including the Professor) continued to see me on a regular basis as an out-patient for the next years...
...it took another six to seven years for my kidneys to recover (very slowly and with many set-backs) to about 40% function and they have remained stable like this  until August 2006...
...I and steadily and slowly became so unwell, that I felt I needed to see a private consultant to get the diagnosis why I suffered unexplainable water retention and felt so unwell ,
... because my NHS consultant could not tell me anything, he told me "it was all in my mind"...
...But this private consultant informed me that I had reached end stage kidney failure and urgently needed to be trained by a dialysis nurse to be ready for dialysis within the next six months...
...I had no idea about my ESRF, despite always keeping strictly to my vegetarian diet and my Urea, Creatinine, Sodium and Potassium and many other SLE/MCTD blood tests were regularly checked-up every three months by this well known NHS rheumatological/nephrological consultant (who had told me "it was all in my mind"... over may years... during  the 7 minutes he "allowed me" every time to consult with him ...
...he never gave me any warnings about my failing kidneys... I wondered for whom and why and for what my blood tests were actually for?...
...Was I being misused again for NHS-medical experiments because of my rare diseases or was I being misused again for medical research? ...
To mention that I was traumatized by this well known NHS consultant and my own  NHS general practitioner who „worked with this consultant and knew him“  and also confirmed that "it was all in my mind"...plus the state of NHS state health care, would be a complete understatement ...
...I completely panicked and almost felt emotionally paralyzed with fears for my life...
...I also could not understand why this was happening to me... and what all my studies were for and the building-up of my whole (sometimes very public) promising career, whilst in the meantime I could not even rely on the medical integrity of NHS doctors who had a very nice and very regular yearly income through the state and the taxpayer... (some NHS general practitioners can make up to £  150.000 (hundred-and-fifty thousand English Ponds) per year...and the income of NHS consultants is not really known...
...and most of them work as private doctors as well to get much more income...
...and then they play such cruel medical tricks on a desperate patients who need to needs to get on with life but can't because they are too unwell...
...I began to get an idea about being  „shell-shocked“ because I felt emotionally completely traumatized and  I then I thought about my photosensitivity and drug-intolerance and realized I had to pull myself together and started to research the Internet for the best surviving diet in end stage kidney failure....
...I compared all existing typical treatment options in the context of my all my allergies and diseases (SLE, MCTD, chronic proliferative glomerulonephritis, hypertension, end stage kidney failure, Vasculitis, Antiphospholipid Syndrome etc...etc...) ...
...and then I began to research what all the diets suggested and what they had in common and what not...
...I then went through all of them and compatibility of my new vegetarian diet and have kept to these few options very day...
...since August 2006 I have been checking-up my Creatinine Urea, Potassium and Sodium every month privately and  look-up the results on the Cockcroft-Gault Estimator (according to Creatinine, Urea, Potassium, age, female, weight) and always according to the same Cockcroft–Gault-Estimator ...
...I then started a little list in a little corner in my kitchen and there I write it down every month  to observe the „trend“ of „my two little fighters“...

I shall give it my very best to give my „two little fighters“ the time and chance to recover from the kidney stone-upheaval and complete calcium-overload...
...and my circulation has already started to feel just a little better, especially since I have started to make sure to go for two little walks ever day...
...one in the afternoon round the block and one little one just before going to bed in the evening...
...I do hope, it makes me a little stronger and hopefully there is another chance...
...my blood pressure machine  assists me to check-up once every day andit is always around 120/70 with very little variations...

Thank you very much for your kind encouragement and thanks for all the information which I shall take with me this afternoon...
I shall  now prepare for my appointment this afternoon...

P.S. There is no chance for me to ever get a private insurance, because all my diseases are chronic, incurable  diseases...

Thanks from Kristina...
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Bach was no pioneer; his style was not influenced by any past or contemporary century.
  He was completion and fulfillment in itself, like a meteor which follows its own path.
                                        -   Robert Schumann  -

                                          ...  Oportet Vivere ...
MooseMom
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« Reply #12 on: February 26, 2014, 09:22:39 AM »

Kiristina, I am most interested to hear what you have to say about your appointment this afternoon.

You know I am a great believer in walking!  It's the perfect exercise.  Even better, it gets you out of the house and into the fresh air (or as fresh as it can be in London; perhaps all of the rain will have cleansed it!) and can be a great distraction.  Getting outside is good for the soul, and combine that with gentle walking, it's terrific!  I'm really glad you are so good about regularly taking your little walks.

Good luck to you!
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"Eggs are so inadequate, don't you think?  I mean, they ought to be able to become anything, but instead you always get a chicken.  Or a duck.  Or whatever they're programmed to be.  You never get anything interesting, like regret, or the middle of last week."
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« Reply #13 on: February 27, 2014, 04:44:22 AM »

How did you get on Kristina
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I started out with nothing and I still have most of it left

1983 high proteinloss in urine, chemo, stroke,coma, dialysis
1984 double nephrectomy
1985 transplant from dad
1998 lost dads kidney, start PD
2003 peritineum burst, back to hemo
2012 start Nxstage home hemo
2020 start Gambro AK96

       still on waitinglist, still ok I think
kristina
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« Reply #14 on: March 07, 2014, 01:56:01 AM »

How did you get on Kristina

Hello again,
I was very lucky because the private nephrologist happened to be one of the best nephrologists in the country ...
and he took one more blood test... he contacted me next day but he insisted to speak to my husband to have someone „ to take over“
and bring me to the nearest accident and emergency, because it so happened that I had already passed the stage of using dialysis –
I needed life-supporting health care much more urgently...
...This nephrologist made sure I was being seen in a hospital where they specialize in urgent dialysis and transplant...
and they urgently treated me first of all for all the lack of whatever I needed most urgently first...
...which was a concoction of life-important nutrients i.e. iron supply etc. for me to produce my own blood again...
I was life dangerously anaemic...and they also gave me lots of other nutrients I needed most urgently to survive again...
...after the first treatments I was already (again) on my feet... and then they discharged me from hospital.... to go back there ...
...for further blood tests next week again to see whether or not my body has been able to produce my own blood again...
...and then on to get an intellectual introduction into dialysis by a dialysis nurse... to be back in hospital for the „next big thing“
... whatever that may bring... dialysis or whatever...the next week after that...

 consulting with this private nephrologist was one of the best medical things happening to me during the past years ...
...and I am very grateful for that!!!

Best wishes from Kristina... (it may sound pathetic, but the battle continues from here... but this time I seem to have been a bit luckier ...
...than ever before...)...
P.S. They told me I would have lost all chances for a possible transplant if I would have had a blood transfusion...
...because of all the possible problems with allergens... whatever... better to "open" possibilities for me to produce my own blood again... whatever....
« Last Edit: March 07, 2014, 02:26:23 AM by kristina » Logged

Bach was no pioneer; his style was not influenced by any past or contemporary century.
  He was completion and fulfillment in itself, like a meteor which follows its own path.
                                        -   Robert Schumann  -

                                          ...  Oportet Vivere ...
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« Reply #15 on: March 07, 2014, 04:36:10 AM »

Have they started you on EPO?  Iron will help replenish iron stores and is necessary for making red blood cells.  However, the kidneys produce EPO, and without this, your stores can be saturated with iron but you will still not make healthy red blood cells; there will be a lot of them but they will not be the right size and you will remain anemic. 
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ESRD 22 years
  -PD for 18 months
  -Transplant 10 years
  -PD for 8 years
  -NxStage since October 2011
Healthy people may look upon me as weak because of my illness, but my illness has given me strength that they can't begin to imagine.

Always look on the bright side of life...
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« Reply #16 on: March 07, 2014, 09:34:42 AM »

Have they started you on EPO?  Iron will help replenish iron stores and is necessary for making red blood cells.  However, the kidneys produce EPO, and without this, your stores can be saturated with iron but you will still not make healthy red blood cells; there will be a lot of them but they will not be the right size and you will remain anemic.

P.S. I don't know what exactly it is they had put me on whilst I was completely bedridden in hospital...
...Fact is ... that I was only movable per wheelchair whilst in hospital...very weak and very vulnerable...
whilst back home right now I was (again) able to go for my first walk again this morning...
... no point to overanalyse it...no point of overanalysing anything anymore... I have had enough of my own overanalysing whilst I studied philosophy and literature... did not get me anywhere at all... apart from some meaningless papers and brilliantly passed exams...
...without any real meaning in the long run... whilst this simple hospital treatment really did help me... I feel so much stronger again...
... and I am almost back to my own little surviving tricks again... and only that really counts...in the long run... and nothing else...
as Dylan Thomas had told us so convincingly: ... do not go gentle ...into that dark night...
« Last Edit: March 07, 2014, 09:36:01 AM by kristina » Logged

Bach was no pioneer; his style was not influenced by any past or contemporary century.
  He was completion and fulfillment in itself, like a meteor which follows its own path.
                                        -   Robert Schumann  -

                                          ...  Oportet Vivere ...
MooseMom
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« Reply #17 on: March 07, 2014, 10:02:21 AM »

Kristina, I'm glad you are doing a bit better and that you are feeling stronger. 
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"Eggs are so inadequate, don't you think?  I mean, they ought to be able to become anything, but instead you always get a chicken.  Or a duck.  Or whatever they're programmed to be.  You never get anything interesting, like regret, or the middle of last week."
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« Reply #18 on: March 07, 2014, 12:54:58 PM »

Thanks MooseMum, your kind words are very much needed...
...thanks a lot... I shall do my best and try to get better soon....
thanks again... but there is no point in trying to ignore it:
...my two little fighters have come to the end of their long life...
...and they have certainly given me all their best and I do accept that they do need
...some medical help and assistance soon...
...and I have to accept it and give my two little fighters a well earned rest...soon...

P.S. reminds me almost of the song by Gilbert Becaud and/or Johnny HALLYDAY: et maintenant.2009.AVI
.... or Johnny Hallyday - L'envie.....
« Last Edit: March 07, 2014, 01:45:18 PM by kristina » Logged

Bach was no pioneer; his style was not influenced by any past or contemporary century.
  He was completion and fulfillment in itself, like a meteor which follows its own path.
                                        -   Robert Schumann  -

                                          ...  Oportet Vivere ...
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« Reply #19 on: March 09, 2014, 12:44:58 AM »

Last week I saw a picture of a fistula in the ankle. Or thereabouts. When you stop and think about it, that does have some advantages to it. Well, for one thing, you could still knit at treatment, or crochet and crossword puzzles and such. And maybe even wiggle around a little bit. But, there must be some really bad reasons to it too. Otherwise, every oe would be doing it.
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One day at a time, thats all I can do.
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« Reply #20 on: March 09, 2014, 11:59:17 AM »

Having recently had surgery on my hand off carpal tunnel syndrome and the docs trying to put an IV in my foot (unsuccessfully), I cannot begin to imagine anyone wanting an access anywhere near their foot.  It was so painful and that was a tiny needle.
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ESRD 22 years
  -PD for 18 months
  -Transplant 10 years
  -PD for 8 years
  -NxStage since October 2011
Healthy people may look upon me as weak because of my illness, but my illness has given me strength that they can't begin to imagine.

Always look on the bright side of life...
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« Reply #21 on: March 09, 2014, 12:05:47 PM »

Kristina, it's great to have some idea about where you would like to have your fistula, but only an assessment including vein mapping will actually reveal if where you want it may be a feasible option.  I was convinced that I would be able to have a fistula in my wrist; turned out that my veins were not big enough to support them.  Of course, you may opt for a graft but typically these have more problems than a fistula. 
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ESRD 22 years
  -PD for 18 months
  -Transplant 10 years
  -PD for 8 years
  -NxStage since October 2011
Healthy people may look upon me as weak because of my illness, but my illness has given me strength that they can't begin to imagine.

Always look on the bright side of life...
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