My pre-dialysis-days have finally come to an end...

[okarol]

  Hope all continues to go well.
Jenna started emergency dialysis 2 days before Christmas 2004.
I am glad you were prepared, much better that way.

[kristina]

Thank you okarol, for your kind thought, it is very much appreciated.
I do hope Jenna is doing well, is in good health
and I am very sorry that she had to start with dialysis in 2004 two days before Christmas...
... It made me feel very strange when I was "entwined with the machine" in the dialysis-centre before Christmas ...
... Thankfully I was already mentally prepared for dialysis when I started with it, but strangely enough,
the actual experience was very different again and I am still trying to find my way into the new routine,
and also try very hard to make it a success and I feel very grateful that I am still alive
because without the invention of dialysis I would not be alive anymore right now ...
and that is a very strange feeling... almost a little bit eerie...
... I have also noticed, that in order to avoid too many mishaps with dialysis,
I better stick vigilantly to my healthy vegetarian diet ... and also better stick to the limited liquid-intake....
... it is hard and unfortunately there is no other way...
Thanks again and best wishes from Kristina.

[kristina]

Hello again,
Having used one of the dialysis-machines in “my” dialysis-centre for 16 times during the last 4 weeks and 5 days,
I have noticed that the transition from pre-dialysis to dialysis has happened
without any noticeable "hiccups" or "upsets" within my body ... (touch wood)...
...and I feel extremely relieved and very grateful about this ...
...The transition from being pre-dialysis to my starting with dialysis was perhaps not overly hard or abrupt to my body,
because I did continue to eat exactly the same vegetarian diet as I did in all those years whilst being pre-dialysis ...
... Perhaps my body has remained so calm during all this upheaval and great transition,
 because there was no change whatsoever with my diet  ...  ?

[cassandra]

Sounds very poss Kristina. I hope you'll keep feeling well till your transplant honey

       


Love, Cas

[kristina]

Thank you for your kind thoughts, Cassandra,
I do appreciate it very much.
Best wishes and thanks again from Kristina.

[kristina]

... I have asked the medical team and the dietician how I should continue with my vegetarian diet since starting dialysis,
because supposedly I need so much more protein whilst on dialysis... They all had a look at my monthly-blood-test-results
and told me that I should certainly "continue with what I am doing" because all my blood-test-results are fine
and there is nothing at all that needs a change in my vegetarian diet ...
Because of that I shall continue with the same vegetarian diet as I did before in my pre-dialysis-years  ...

[PrimeTimer]

kristina, that is great news! Paying attention to your lab results each month will tell you if/when your diet needs some tweaking. It will also tell you if you have room to spare and can indulge in something you normally wouldn't...hee, hee.  It's good that you don't have to change anything right now. Good luck, keep well!

[graciekycats]

Hey Kristina - I am almost there myself GFR dropped to 13.5 from 18 a month ago.  I'm a little scared about those huge needles.  I plan on in-center hemo to begin with.  We have a lot of people pulling for us here.  Group hug is needed  and welcome.

[kristina]

Hello Gracie,
... It depends how you feel with your GFR in the near future and I am sure you know when your body needs dialysis...
... I have a "tunneled chest-catheter" and I get "my" dialysis through the catheter and don't  "need" any needles,
 which is very important for me because I am not quite a "needlephobic", but I am not that far off from it either...
... It is true that we have lot of people pulling us here and there is always lots of support to be found here...
I do wish you good luck and all the best,
Kristina.

[Simon Dog]

Take a small water and a snack if they let you eat at your center

Take it even if they don't.  Often the rules "as applied" differ significantly from those "as posted" (or in the literature)

[kristina]

Take a small water and a snack if they let you eat at your center

Take it even if they don't.  Often the rules "as applied" differ significantly from those "as posted" (or in the literature)

... I always take a sandwich with me and eating this sandwich at the very beginning of each session,
seems to "ease my body" into the procedure...
...  after about two hours of each dialysis-session a lady comes along with a tray of sandwiches and I always chose one ...
... she also offers coffee or tea and a biscuit...  and all that helps a lot to make each session a little bit easier to take ...
... and it also puts a human touch into it ...
Thanks again from Kristina.

[kristina]

... My husband kindly offered to donate one of his kidneys in an exchange,
so that I could have a kidney-transplant and we both went through all the necessary medical examinations...
... I was very lucky and "sailed through" every medical examination without any medical problem being noticed or found
and unfortunately my husband was diagnosed with cancer...
... But we were very lucky, because the cancer was "spotted" in its very early stage
and my husband "only" needed a quick operation and no other treatment was necessary for him ...
... After his very successful operation we were being told that we now have to "wait and see" for about two years
to have another chance and try again...

P.S. We still can't believe that without my husband's kidney-donation-work-up
this cancer would not have been noticed or diagnosed, because there were no symptoms at all ...
... and we still can't believe how quickly it was medically sorted out ...
... It feels now like a nightmare which disappeared as quickly as it came about ...

Kristina.

[Athena]

... My husband kindly offered to donate one of his kidneys in an exchange,
so that I could have a kidney-transplant and we both went through all the necessary medical examinations...
... I was very lucky and "sailed through" every medical examination without any medical problem being noticed or found
and unfortunately my husband was diagnosed with cancer...
... But we were very lucky, because the cancer was "spotted" in its very early stage
and my husband "only" needed a quick operation and no other treatment was necessary for him ...
... After his very successful operation we were being told that we now have to "wait and see" for about two years
to have another chance and try again...

P.S. We still can't believe that without my husband's kidney-donation-work-up
this cancer would not have been noticed or diagnosed, because there were no symptoms at all ...
... and we still can't believe how quickly it was medically sorted out ...
... It feels now like a nightmare which disappeared as quickly as it came about ...

Kristina.

Kristina, I am truly sorry to hear this. But at the same time so glad that your husband's cancer was found at such an early stage. Most cancer evades detection until there are some symptoms, and even when there are some symptoms, a lot of people ignore them. Your husband sure was lucky and you were the reason for this luck.
Best of luck to you both 

[MooseMom]

Kristina, two years must seem like a long time, especially since we were all thinking that you'd be transplanted possibly this summer.  So, I'm sorry to hear this news, but I'm sure your husband will be checked frequently.  Perhaps his doctor will give his consent for your husband to donate in less than two years if all of his reports come back clean.  We will all be hoping for the best.

In the meantime, you have always taken good care of yourself, so I am very confident that you will cope well with dialysis just as you've coped well for so long during your years of pre-dialysis.  Are you still on the transplant list in the UK?  Would you be willing to have a cadaveric donor?  If so, is it possible that you won't have to wait for 2 years for a new kidney?

 

[cassandra]

Dear Kristina, I'm sorry to read your news, and agree with Athena about your husband's 'luck' with the early detection.
 Best of luck, and health to the both of you of course, and I would think you are on the waiting list anyway, so you never know, those 2 years might be much shorter.

Lots of love, luck and strength to you both, Cas

[kristina]

Many thanks for your kind support Athena, MooseMom and cassandra,
it is very much appreciated because at the moment I feel a bit "down in the dumps" about the attitude of some nurses at "my" dialysis-centre...
Unfortunately, not many nurses/medics appreciate my suffering from severe photosensitivity due to "my" SLE/Lupus/MCTD
and that is the reason why I find myself again and again explaining again and again my severe symptoms etc. of photosensitivity
(even though it is already medically gone into and clearly medically explained in my medical file ...)
... This situation makes me feel sometimes like a hopeless parrot who has to repeat (and explain) the same story over and over again 
and it really brings me down, because by being forced to explain over and over again my situation, it really "rubs in" my terrible medical condition ...
The problem is unfortunately, that in my case it can become seriously life-dangerous, if I am exposed to artificial ultraviolet lighting for too long,
because that causes an SLE/MCTD-flare-up and raises my BP to such an extend, that in the past it has caused me to suffer
from cerebral haemorrhages, a severe CVA-stroke and some other life-threatening medical complaints ...
It should then go without saying that such a severe condition explains itself without much to add, but unfortunately that is not so...
Yesterday I was forced to put on my "parrot-suit" again to defend my position again and again
and fortunately I finally could stand my ground two hours later ...
... The question is now, what might happen the next time at the dialysis-centre and what is going on in the first place
when all about my medical condition has already been fully explained in my medical file anyway ...?
Thanks again from Kristina.

[Athena]

Oh Kristina, I sure do know how it feels like to have to adopt the position of being a parrot. When I was one week in hospital earlier this year (which was a renal ward), I had to repeat myself over and over again that the airconditioning was too cold for me & that I was constantly freezing. When my body temperature reached 35 degrees, they decided to 'approve' an electric blanket for me - and then at the last minute, they changed their minds because my next temperature reading, while I was waiting for the electric blanket to arrive, was 36 degrees! I positively felt tortured. And I thought doctors & nurses understood that kidney patients readily feel cold. I felt like I was tortured for 1 week.

I don't know anything about photo-sensitivity but if it's documented in your medical file and is a recognised condition - then they CANNOT ignore it. It's all there in black & white. If they are ignoring or neglecting this, are you able to write a letter of complaint to the hospital or any other appropriate health complaints regulatory body? That is what we are advised to do here in Australia if there is any unsatisfactory element of healthcare. If there is a formal letter of complaint, they are not able to ignore it. Is that how it works in the UK as well?

(Making a complaint is never an easy thing though. I'm still procrastinating about making my formal complaint).

[kristina]

Thank you for your kind support Athena,
... unfortunately there is a problem about complaining when it concerns my suffering from photosensitivity,
because practically all public places and hospitals have these new artificial ultraviolet lightings installed
and if the complaints of the very few who suffer from photosensitivity would be taken on,
all these artificial ultraviolet lightings would have to be changed and that would be very serious money ...
... My sort of "compromise" has been for many years, that I am quite happy, if my suffering from photosensitivity
(as a result of my suffering from Lupus/SLE/MCTD etc.) is being taken into account and taken care of,
by giving me a chance to be put into a place/room/corner where I am given a chance to switch off this light ...
... Lets hope things improve ...
Thanks again and best wishes from Kristina.

[Athena]

Kristina, I don't know how your photosensitivity manifests itself but I have to just add that I find these new environmentally friendly ultraviolet lights to have a horrible depressing effect on me. The light is so dull. And any photo that is taken in that light makes people look awful as well! I think I can understand how some people can actually fall ill from them.

Hopefully from all the repetitive feedback you've given them, they will ensure you get a good corner with proper lighting in future.

[kitkatz]

Unfortunately as busy as medical people are in a dialysis center, your file has probably not been read by more than two people and they need YOU to speak up for yourself.  Be the parrot and ask for what you need. I have asked for TVs that are around and on to be turned off if no patient is using them due to it being a light source.  I have also had to ask for the blinds to be lowered so street lights are not glaring into the room at night ay my center.

In addition at Kaiser hospital I am like a vampire in my room. The lights are off and I want the curtain and door closed so lights and noise from the hallway are not bothering me.  I have had to ask nurses to put on their work lights over the counter and try to keep from turning on the over head lights when coming in to do vitals.  After explaining that the lights bother me they have always been nice about it.

[kristina]

Many thanks for your kind understanding Athena and kitkatz, it is very much appreciated.
Fortunately "my" photosensitivity was being accommodated for
at my last dialyse-session and hopefully "things" are eventually getting sorted out.
Thanks again from Kristina.

[kristina]

... After "jumping" through many (uncounted) "hoops" because of former cancer-issues ...
... and after waiting patiently for a considerable time, I have just been informed
that I have (finally) been put onto the UK-kidney-transplant-waiting-list...
... But I still have to continue being patient, because I have also been informed,
that waiting on the kidney-transplant-waiting-list can still take up to 3 to 4 years  ...
... But at least I can be rest-assured, that I am now on the transplant-waiting-list ......
... and I feel truly ready for this next adventure...
... and ...  hopefully it all goes - eventually - well ...

[cassandra]

Congrats Kristina, maybe next time at your (probably) yearly transplant waitinglist visit you can ask what your antibodies are.

Wishing you all the luck and love in the world, Cas

[kristina]

Thank you Cassandra for your lovely thoughts, they are very much appreciated !
The doctors told me during my medical transplant-waiting-list-work-up that I am a "lucky girl" because no antibodies were found ...
... They were quite surprised that despite my dreadful health-history I could avoid blood-transfusions etc. during all those years ...
... and hopefully it brings good luck in the future ...
Many thanks again from Kristina.

[Blake nighsonger]

Thank you there ...that's what I get to do now seems my fistula isn't working right ...
Get to get catheter in neck bone ..... Funny happened though .... Nice short little asian lady was humm ing in my ear' as she put needles in , then when she started having trouble she cussed....(under her breath). Made me feel right at (ship) home !

She said it was to deep and surgeon would work on it.
Needle has to be near vertical and was to short.
Anyway , I don't like to talk
about it ---