Playing piano with fistula?

[Litegirl]

I am glad you liked the videos, Kristina. They very encouraging, aren't they? Life doesn't stop with the beginning of dialysis.
Thanks for asking how I am doing.  You are right, it was Sirolimus indeed. In 2 months after starting it I developed pulmonary thromboebmolism and pulmonary infiltrates of unknown aetiology. No infection was found. On the 2nd thorax CT infiltrates were a little bit reduced. Going for 3rd CT somehow in the summer hopefully, the waitig list is too long. Frankly speaking I am feeling not very great. But I don't know what I can do. The doctors don't exclude lung toxicity of Myfortic and Sirolimus together. But I don't have a clear medical report yet. It takes a very long time as you probably know… When do you need to start hemodialysis? Very soon or in a few years? Best wishes to you from me.

[kristina]

Hello Litegirl,
I am very sorry for what you go through and I am also very sorry for the long time it takes for you to get diagnosed ... 
...I do hope you are getting sorted out soon...
Are you being treated here or on the Continent?
Thanks for asking, my “two little fighters” have been functioning better since I started treatment with an iron infusion and a few “Mircera” injections for “my” severe anaemia.
It worked a treat and I have no idea why the anaemia treatment had such a positive effect on my kidney function and the rest of my body,
but as a result of this good effect my being put on emergency-dialysis has been postponed for the time being...
...I feel quite chuffed about it, because I usually suffer from all sorts of allergies and drug intolerances and just this time the medicine has had a good effect on my body without side-effects... This gives me lots of hope for the future...
I shall see the nephrologist soon and see how my future could plan out, because there is no doubt that my “two little fighters” need help soon...

I do hope your luck changes very soon as well and I also hope, you get a diagnosis and treatment soon.

I send you my best wishes, Kristina.

[Litegirl]

Hi Kristina,
That's a very good news your body accepts iron (Venofer?) and epoetin beta infusions without allergic reactions. You will need these infusions later on HD. I also hope you can extend you dialysis free time.
 I tolerated iron+epoetin therapy pretty well also. But now my nephrologist is reluctant to prescribe iron infusion despite my iron deficiency. She worries about my possible allergy to the iron.

I am on the Continent just now. I'd love to go back to the UK but my health doesn't let me at the moment. It looks like I have a few medical investigations in the nearest future. Myfortic and Sirolimus seems to be lung,kidney and liver toxic for me. Some of the doctors realise the problem ( drug intolerance) but they need proofs - biopsy, CT, blood tests, MRI etc. Hope I can manage all those. Every week my blood tests and condition worsen unfortunately. Today I woke up to find my legs extremely swollen. As far as I know it's a common side effect of Sirolimus but why I developed it just now, in 6 months after I started taking S.? I still have some medical mystery to resolve 
Enjoy your time before HD. You might go somewhere as well   

[kristina]

Hi Litegirl and thank you for the kind wishes.

I also hope that my “two little fighters” can “hang on” a little longer with these “Mircera” injections.
Fortunately I don’t have any of the typical ESRF symptoms yet and I also try to keep as fit as possible.
I am not sure what sort of Iron infusion I had, I think it might have been "Venofer".

I am very sorry for what you are going through. Have the doctors tried to change your medication?
"My" drug-intolerance is always noticed how my body reacts, like blisters all over, high temperature, high BP and all sorts of other allergic reactions... these symptoms always subside as soon as the particular medication is being stopped... and another medication has to be tried out...
... I remember that it took ages to find an anti-hypertensive medication which my body could tolerate ... and I have been taking the same anti-hypertensive medication (Pfizer Istin/Amlodipine) for many years ever since... Because of my drug-intolerance it has to be always the same Istin/Amlodipine from the same company every time the same without any change... I do know how difficult it can become to find the right treatment when drug-intolerance makes life very difficult. It was always very difficult for me to wait patiently for the right medication which would not give me terrible side-effects...

Unfortunately I could not find any new research-results, but I know that at the Clinic in Kiel (not at the University) medics continuously research about drug-intolerance, because SLE/MCTD patients are being diagnosed and treated there and drug-intolerance is well known to create great difficulties to treat SLE/MCTD patients...

... Last summer I also had a hard time when my legs were swelling up. In my case it was due to the reaction of my poor kidney function to extremely hot summer temperatures and as soon as it became a little cooler, the swelling subsided again... could that be the same reason for the swelling in in your case ?

I do hope you are getting sorted out and hopefully you feel better soon ! I keep my fingers crossed and send you my best wishes,

Kristina.

P.S. I just remember the terrible struggles I had with anti-hypertensives like the betablocker "Atenolol", before I suffered a stroke: My drug-intolerance to "Atenolol" caused me to suffer an SLE/MCTD flare-up, which made my BP going very high, completely out of control and my pulse became at the same time unnaturally slow, whilst my extremities (hands and feet) went ice cold... Another anti-hypertensive medicine made my glands swell to such an extend that I could hardly swallow my food or breath... these were some of the most severe drug-intolerances I have experienced. One doctor said that because I have always been allergic to Penicillin might also be connected to my drug-intolerance.

[Litegirl]

Oh you've described really severe symptoms of your drug intolerance! I am sorry about that. Especially because I have  some of those myself also. I can imagine how you feel if you have to go through something horrible like drug intolerance. My side effects look like breathlessness, drug induced asthma and rash. My immune system is probably also involved in my symptoms.
As fas as I see all people react differently to the same medicines, also the reactions may be different at different time. I could tolerate amplodipine just perfect in the UK, but now I have awful headache after 1-2 tablets of it.
Today my legs are not so swollen, I believe it's due to the reduced Sirolimus blood concentration.

Kristina, thank you very much for the information about the Clinic in Kiel which is involved into drug intolerance researches. If you have any links to the research done in this clinic, would you share them with me here please?

You have a very positive attitude to your kidney failure. As far as I can judge you are not depressed or feeling low. You keep your  mind and body fit. Just don't delay dialysis too long. When your GFR is down to 15mL/min, you would need to start HD.  Here is a good MDRD calculator   http://www.patient.co.uk/doctor/estimated-glomerular-filtration-rate-gfr-calculator   I guess you know about the calculator but I just wanted to remind you about health benefits of timely scheduled dialysis.  Great you can keep your normal life style and adjust it and your mind well in advance to the future treatment. Hope you will start it smoothly.
My warm wishes to you.

[kristina]

Thanks again Litegirl for your kind wishes and thank you for the link to the estimation of glomerular filtration rate.
It is strange that many symptoms of drug-intolerance and allergies can be so similar with different people and it is true,
that drug intolerance can be extremely frustrating and sometimes hard to convince doctors,
that we have already done “the eliminating job” and the terrible symptoms can only be due to the new medication ...
... and that can be an added weight and very depressing at times...
I have sent you some more information about the Clinic in Kiel
and I keep my fingers crossed that with a bit of luck they can help you there
or give you some helpful information, where you can go to sort this out...

Good luck and best wishes from Kristina.