I Hate Dialysis Message Board
Dialysis Discussion => Dialysis: General Discussion => Topic started by: kristina on May 12, 2014, 04:25:22 AM
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Hello,
I would like to know if there are any pianists with a fistula? I am very concerned about loosing dexterity in my fingers
and concerned about my fingers becoming cold as this might also have an effect...
... I am also concerned about which arm to have the fistula in.
My learning to play the piano was originally “only” thought as a new method of rehabilitation
to get my right arm, hand and fingers moving again after “my” stroke,
but it has developed to be my favourite hobby ever since...
I was born left handed but brought up in a right handed way, which has left me with both hands almost being ambidextrous...
Where on the arm and on which arm should I have the fistula fitted to remain able to continue playing the piano?
What do I have to take care of to keep everything going despite the fistula and oncoming dialysis?
What do I have to make sure of before having the fistula fitted?
How important is vein mapping? How can I avoid possible nerve damage?
Thanks from Kristina.
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Hi i'm not a pianist, but i do have a fistula.
The surgeon will advise you on which arm he feels will be more successful. I have mine in my right arm and i am right handed. Before starting dialysis i had no issues with my hand at all. The lump where the vein was joined got in the way occaisanly (look at my blog for a picture).
However since i started dialysis i have noticed my hand going cold. I also get random pains in my arm/hand.
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Thank you Imden for raising these points.
I shall make a note of them and ask the specialist about this.
Thanks again from Kristina.
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You cant do a fistula without vein mapping as it is the way to identify the veins and measure the size and flow. The location of the fistula will depend on what the vein mapping shows. My wife ha s her fistula in her right or dominant arm and has no problems doing anything. She types with it all day and never has pain or issues. A good vascular surgeon is the key.
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Thank you very much for your advice obsidianom.
From what I keep hearing/reading, a good surgeon seems to be the most important aspect
of the fistula fitting.
The question is how to find a good reliable surgeon?
Thanks again from Kristina.
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Since I don't have a fistula, I don't have advice on where to place it. But most people advise against heavy lifting afterward. I would think piano playing would be allowed.
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Thank you Jeannea,
I have talked with my nephrologist.about my concerns about this and he agrees,
that my continuing to learn and play the piano is important to my well being...
He also promised to think about it and take my concerns into account ...
I thought that was very reassuring... I am aware that such priorities seem perhaps a little strange
because, after all, dialysis is really a life saver..... but my learning and playing the piano
has assisted me such lot to deal with serious health issues in the past
and I do hope it continues...
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Just no Rachmoninoff. Too many loud chords with too many notes in the chords. :) i wouldn't give up piano either.
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Thank you jeannea,
Unfortunately many pianists play Sergei Rachmaninov much too fast and it makes many of his compositions almost appear a little aggressive...
... But most of Rachmaninov's compositions are rather melancholic and his Piano Concerto No. 2 tells us the story of his upbringing
and childhood memories of “Old Tsarist Russia” with a touch of nostalgia and homesickness...
The best interpretation of this piano concerto is in my opinion Peter Katin playing the piano
with the New Symphony Orchestra of London conducted by Colin Davis in 1971...
... It is sad when some (very modern) Pianists play Rachmaninov very fast in order to show off their own “Olympic fast abilities on the piano”
and completely ignore Rachmaninovs sensitive and melancholic thought process...
... Piano playing and listening to music are wonderful hobbies and can act as assistance in all sorts of situations...
... and it would be very sad if I would have to give up my playing and learning the piano ... because it has helped me such a lot in the past...
I started very early on to get specialized in the music of Purcell, J.S. Bach, Friedemann Bach, Haendel, Arcangelo Corelli, Domenico Scarlatti,
Mozart, Elgar’s “Nimrod” and I feel very much "at home" with these composers, their compositions and their thinking as I understand it...
... at the moment I study J.S. Bach’s “Aria” from the Count Kayserling (Goldberg) Variations,
which is one of the most beautiful pieces in music... and certainly one of the most difficult one’s...
Do you play the piano as well?
Best wishes from Kristina.
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There is probably not a single study on this issue in the medical literature. I used to play fairly well having in my younger days been asked to play at a piano bar by the owner while I was fooling around late one night on his piano with some of my friends and another time, my music teacher signed me up for "talent" show that I really DIDN'T want to do and the lady doing the auditions stated, Oh I am sorry, we don't take professionals after I auditioned with Chopin's Military Polonaise. I guess that is my 15 minutes of musical fame so to speak. Interestingly, my piano teacher at that time used to play for the Boston Pops double piano with her husband and graduated from Juilliard with a Masters and Bachelors degree told me I played that same piece better than she did. Well, I guess you can't make a career out of one piece of music, but it did make my day. My wife can't believe that the story is true, but one again, that was my 15 minutes of musical fame, well acclaim might be a better word since only a few people ever heard me play.
I don't play anywhere near as much as I did when I was younger, but I can't see personally any reason not to do so. First, it is good exercise for the hands, wrists and arms which is a good thing for fistula's and there is no trauma to the arm itself. Does playing powerful chords have an adverse effect? None that I have personally experienced in the last 8 years of having my fistula. So, no direct medical evidence to turn to, but no problems in my own experience.
In fact, I have a 4 yo granddaughter who is interested in the piano and is smart as a whip. If she does take a serious interest in this, I will REALLY have to get back to pounding the keyboard so to speak to keep ahead of her at least in the early years. So, I have no plans whatsoever to give up playing the piano. I just wish I could still play as well as I did 30 years ago, but I can't run as fast as I did in those days either. Just my own take on the issue.
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Hello Hemodoc,
you were very lucky to have been taught by such a distinguished piano teacher.
I have read about the Juilliard School, because one of my favourite pianists Josef Lhevinne worked there. I have some of his early Ampico Recordings from rolls and one of my favourite recordings is his 1925 interpretation of Anton Rubinstein’s "Kamennoi Ostrow". The melody of “Kammeroy-Ostrow” was used in some “old” Russian films i.e. “Katherine the Great” (The Scarlet Empress 1934) etc. and it took me years to find the name of the composer of this melody, because he was never mentioned in any of these films ... and Lhevinne plays it very sensitive and dreamy on the Ampico roll...
I am sure you play extremely well, if you were thought of as a professional! Do you sometimes record your playing?
I always record some of my pieces to hear them, criticize them and learn better etc.
When I first started, I tried very hard to find a teacher, but it became difficult because I started as an adult from scratch and it is “only” my hobby. Finding a teacher was difficult, not only because of health issues but because I had no practical connection to the music world and I knew no one who could recommend a reliable teacher. I then started and learn on my own and it has been a wonderful journey of discovery ever since. I was lucky that the music scholars at the British Library were very helpful and allowed me to buy photocopies of the first Edition from Muzio Clementi’s “Introduction to the Art of playing on the Piano Forte” (1801) which is fascinating and inspiring to start learning, with interesting little pieces by Mozart and continuing in lesson III with Haendel’s “Air” in Atlanta. Lesson IV is the Air in Haendel’s “Saul” (including the “Dies Irae”), then Corelli, Couperin, Scarlatti, Pleyel, Rameau, Haydn and Dussek.
Clementi always printed his own idea of fingering onto each page and that assists the student to develop dexterity and an ear for tonality.
I later found a copy of Clementi’s Appendix to the 5th Edition (1811), which includes melodies by J.S. Bach and Christian Bach and many others and I have been enthusiastic about learning these lovely melodies ever since.
I also like the sensitive melodies of John Field and Chopin. Do you specialize in Chopin, or do you also play compositions and melodies by other composers ?
Kind regards from Kristina.
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Actually I knew how to play a few songs quite well but was greatly limited by my inability to sight read music well. I always memorized the music and played from memory. Obviously, that still takes a bit of time. I didn't start playing until I was 19. I had played the clarinet for about or three years so I knew the basic music scales etc. but sight reading is a different skill I have never really mastered.
Then with 20 years of medical practice, I have lost much of my musical ability. I am sure with 3-4 hours of practice I could get back in shape so to speak, but I have never had the heart for it as I did 30 years ago. With my granddaughter expressing an interest, I will get back into it, but it does take a lot of practice as you are well aware.
Yes, on a couple of occasions after playing for about 7 years, I had mastered a few pieces. I played the usual Clementi, Mozart and I did like Chopin more than others. I played several of the preludes, I was learning the revolutionary etude and I had done pretty well with some interesting nocturnes and one other Chopin piece that is escaping my dialysis brain right now, but I believe it was Opus 65. I will think of it in a minute, I think it starts with a B. Oh shucks, well so much for the memory any longer. I did like playing some of Scott Joplins works, Brian's Song and Bridge over troubled waters. I played a couple of the Mozart Sonatas and I still toy with the Turkish Rondo which is a bit of fun.
Well, thanks for the encouragement, I will have to get back to it. I have studied a little bit of improvisation from a church music perspective which is a whole new entity, I just haven't put the time in yet to gain much from it to date.
In any case, I am not giving up piano from my fistula. I wish I knew of some studies, but I am not aware of any right now. Take care and stay in touch.
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I've played since I was a child. I'm a better accompanist than soloist. I have a few books I like to dabble with and I also play hymns. I can sight read but find it impossible to memorize. Anymore it's just playing for me. I came out of "retirement" to accompany a children's camp where they learn a musical. I had done it for years and then couldn't keep up physically for the week. Last summer they had no one and I figured out a way to do it. I love playing but I lost some musical abilities when I lost some brain function in my coma 5 years ago.
It doesn't even matter what you play as long as you like it. Music can have great benefits.
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I've played since I was a child. I'm a better accompanist than soloist. I have a few books I like to dabble with and I also play hymns. I can sight read but find it impossible to memorize. Anymore it's just playing for me. I came out of "retirement" to accompany a children's camp where they learn a musical. I had done it for years and then couldn't keep up physically for the week. Last summer they had no one and I figured out a way to do it. I love playing but I lost some musical abilities when I lost some brain function in my coma 5 years ago.
It doesn't even matter what you play as long as you like it. Music can have great benefits.
So true, but at present because of my lack of practice, I am really out of practice so to speak. (Sorry). If I can get a bit more disciplined again, I should be able to handle an hour a day of practice and then when things start to come together, it is not longer practice but quite a bit of fun. It will take a bit to get back to the fun stage, but it is something I should get back into. Music is a wonderful gift. We should all keep it up as long as possible. My granddaughter is playing with the keys and beginning to learn how to read. I have heard that reading skills are something kids should have before diving into the piano seriously. We will see but I am hoping she gets interested in learning. We will see.
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Thank you hemodoc and jeannea for your kind thoughts and encouragement.
I also found it very difficult to learn how to read a score. Then I noticed that it helps me, if I take a score which may not even have a melody to remember and, whilst “working through it”, it can provide a good training for score-reading.
Of course, it takes time and I train myself regularly only for about 10-15 minutes, but this method has been very encouraging...
Perhaps we could inspire and encourage each other regularly?
I have collected some interesting scores from Charity Shops, Second Hand Book Shops etc. and a few years ago the BBC donated many of their LP’s to Charities. That gave me a chance to buy some interesting classical LP's for little money and it also gave me an idea how some “forgotten” early composers and/or pianists sound... Youtube is also a great help ... and Youtube also demonstrates, how different compositions are often being performed in many different ways...
Please don’t hesitate to let me know if you are looking for a particular score or a particular melody which I may have and I shall send it to you by e-mail .
Best wishes and kind regards from Kristina.
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It's like the old joke:
Patient - "Doc, will I be able to play the piano after this operation?"
Doc - Yes
Patient - "Doc, that's fantastic, since I never could play it before".
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I got my fistula in March of 2005. It didn't work well at first and had to be ballooned twice. Fortunately I had a nurse as opposed to a technician cannulating me for the first month. Once it started working it's been fine. It was unused for 6 years while I had a working transplant I restarted dialysis in January of 2102 and it's been working fine since then too. I've never had any issue with loss of feeling or my hand being cold. Other than the bumps on my arm, I have so side effects from it. I once told my Cub Scouts they were from a snake bite,so we need to be careful when camping. It worked.
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Thank you Speedy1wrc for sharing your experiences with your fistula,
it is very reassuring and gives more hope.
It made me smile to read what you said to your Club Scouts about the bump on your arm ,
and why you have to be careful when camping ...
the way you handled the situation with the little ones made me smile...
... and it also reminded me that once I was looking after children as "a job" during my studies:
When these children refused to eat because their parents were away,
I made up some very exotic long-winded names for all sorts of simple food
and because of these exotic names curiosity took over and the children were starting to eat again...
... it just goes to prove that there are always some little ways to get over a tricky situation...
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Working with the Scouts got me through a number of very rough years. I have very fond memories of it. Being distracted can go a long way with dealing with our hardships. Being on dialysis we sometimes need a lot of distractions. I'm glad you have your piano, that's perfect.
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Thank you Speedy1wrc, I agree with you. It does help a lot to have some other distraction/hobby/priority
and create for ourselves a chance to concentrate on other things as well, whilst we go through a rough time.
Having a distraction or a hobby or whatever keeps our life in much better shape and prevents us
from becoming overly focussed on the bad luck of going through rough times and/or our medical issues.
If you wish to start learning and playing the piano, please feel free to ask about books etc.
It is never too late to start ...
Best wishes from Kristina.
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my hobby is cutting down Maple trees with my chain saw and then cutting them up and splitting them into little peices with a 16 pound maul for firewood. That is what we heat our house with. I cut down 22 trees last weekend. I love to see them fall and crash when they hit. BOOM!!!
I also grow apples . I use my wifes used dialysate for fertilizer and this year we have a record number of blossums . Its like a field of white and pink out there in the orchard.
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Hello obsidianom,
I have not come across many maple trees and unfortunately I don't know much about them,
except that they have beautiful leaves (as shown in the Canadian flag) and produce Maple syrup...
... I admire that you heat you house with your own fire wood and have an orchard to grow apples ... it sounds very cosy...
Best wishes from Kristina.
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I've got a deep, and old fistula. 20 years plus. I find blood flow reduces if I raise it up. Hard to do pruning. Typing is OK, but handwriting results in cramp.
I recommend reading this: http://fistula.memberpath.com/Patients/PatientEducationalMaterials.aspx as a good resource for fistula care and development:)
I fly kites, quite a lot of pull in strong winds. Sometimes I have to pace myself, and its 'medically' probably a no no, but my fistula is well matured:)
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Hello,
I would like to know if there are any pianists with a fistula? I am very concerned about loosing dexterity in my fingers
and concerned about my fingers becoming cold as this might also have an effect...
Thanks from Kristina.
Kristina hi,
I am sorry to read you need to form a fistula. But I hope you will tolerate hemodialysis well. I am pretty sure you can keep enjoying your beautiful hobby with fistula also.
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Thank you very much for your great encouragement JW77 and Litegirl.
JW77, I am impressed that you are able to fly kites and that you have a functioning 20 years old fistula.
It sounds very positive and encouraging ...
Thanks Litegirl for your post.
I love Sviridov's "Time ahead" and it sounds extremely zestful !
"Cuban" reminds me very much of the music played and performed
in some of the fascinating Taverns in St. Petersburg...
How are you doing Litegirl? Do you still have problems with drug-intolerance or has it solved itself?
Are you getting on better with the medication you had problems with, I believe it was "Sirolimus"?
Best wishes and thanks again from Kristina.
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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.
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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.
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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 :waving;
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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.
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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.
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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.