Leong Seng Chen
Extracted from ~ Back-to-School - Lesson 9 (Part II)
(Written on 23rd October 2016 & subjected to revision on 26th October 2016)
I had been closely observing with brief records of note-book on my dialysis treatment during every 4 hours since months ago after I had settled down comfortably with the wonderful machine at NKF Yishun DC1. So it had been 2 years since then, while 5 months in private clinic, before attaching with NKF for 19 months as per today this week. Generally I am quite satisfied & happy enough with my over all progression. However, no pain no gain as the philosophical concept normal saying. Through pain & suffering that possibly make one to better knowing understanding & realizing the true of nature of life-journey. (知这是苦，才可能赵越苦现象而觉之呀！）。
Dialysis treatment at NKF Singapore clinic or centre is now can rightly be considered as my 2nd home & naturally I feel more home nowadays than I was a year ago for which I had been struggling. I had learned quite a bit of thing by managing to adapt unforeseen situation or circumstance nowadays as a dialysis patient in addition to my personal invisible illness! My mental together with the physical body is getting fitter & stronger with cool calm & steady of mind-game despite all the odds about my invisible illness happening earlier! I am able to enjoy my usual habitual diet too within my personal medical category value card issued every 2 months by NKF DC. I am glad & happy this is now a road map & guidance for me along my long winding & tough dialysis journey. No one is happy & enjoying the dialysis journey if given a chance. We kidney failure patients are lucky enough to have artificial machine to help us to prolong & extend our life-span on earth.
Within my own extended families’ member around I had come across kidney transplant siblings too & they are so near to my family as well as some far relatives who had gone through many years of dialysis experience yet have difficulty to express or voice out effectively probably due to poor knowledge in medical field in term of medical illustrative wordings for which I too fall into the same category right now & here as a fresh & or new kidney failure patient.
As I am approaching 69 years old soon & in fact I am 69 already by actual birth date as according to my birth father’s note book record & I am happy enough that I am able to manage to knock down a few medicines since beginning of the dialysis treatment 2 years ago. I had no more gout flare or attack for many months already. No more swollen legs too as happening initially for the first few months during my early dialysis treatment. Today I visit SGH once a year for most of the specialists reviews. No more visiting heart-specialist unless necessary such as operation. Neither I experience frequent legs problem such as cramping both at home & dialysis session except with weak joints at both hips areas while walking a little further away for which I reported to our DC’s nurse manager. She advised to stop & have a little rest in between walking distance. It works well indeed! I also frequently approached our cool calm steady & mindful nurse manager for some medical advice etc ever since she had been settling well with us at our DC a year ago. She is truly an experienced nurse! So do some excellent nurses there who go extra miles as really & kind caregivers.
I hereby like to say that our NKF Yishun DC1 had been improving in many ways about the whole system recently too. And it is still in the process of improvement nowadays. It is so nice feeling & happy to see some improvement as a whole after 19 months as my 2nd home there. By the way this clinic or centre had been established or in operation since 21 years old ago & it is the first ever NKF clinic being established at Singapore Yishun area. Today we have another 2 DCs at Yishun which had been opening & in operating this year.
Basically I personally feel that NKF DC1 had done quite satisfactory in serving the basic Kidney Failure clients or patients. Of course there are rooms for further improvement or upgrading comparatively. The most important or essential is they had done their job satisfactory well enough! This is understandable as a client or patient after all NKF is the biggest public none profit charity of organization in Singapore. It truly provides the best & value for money & the cheapest means for Kidney Failure patients generally as well as encouraging & carry out implementation our Singapore National Kidney Transplant Projects. Now it is going even further & that’s beyond dialysis mission or goal too! I like & love the way the path NKF applying beautiful combination of formula for the overall successful growth & development of NKF in Singapore. Today they also connect well enough with Singapore public, government & private sectors such as:- MOH, Hospitals, Educational department, Family & Social Welfare Affairs department, various agencies, companies, enterprises, monastery etc as associated partnership etc etc running in parallel of co-existence in harmony. The bridge or link is so beautiful & wonderful indeed! The key & main mission is giving life & hope to all walks of life in Singapore for the sole benefit of humankind! Smile & Cheers for healthy & strong NKF Singapore!!!
My shallow & humble expression in this back-to-school lessens from 1 to 9 so far as I had been writing in my personal face book pages, is, to share & contribute, as an individual capacity cum medical patient in Singapore & Malaysia too. It is basically still a process of learning/experiencing stages via Singapore MOH & NKF. In addition, I like to keep a tracing record for a reliable information to my children, my next next generation, my present siblings relatives & friends too. Please kindly forgive me if I have done unintentional mistakes & or somehow neglect some points or topics in my expression or writing manner. I believe & confident that what I think speak do so are in one phase timing though they are not 100% perfect yet. However I am sincere & honest enough through my heart-mind. I hope & wish by frequent & constant practice will somehow some days help me to improve the contents in due course!
Lately I had discovered a little bit more about my personal body & mind game in respect to DIRECT hoping or ATTACHING onto the beautiful haemodialysis machine. I have been able to monitor a few things such as my blood flow rate on my AV Graft, blood pressure in variable stages or state of my body-mind conditions during the process of solid 4 hours dialysis treatment, ideal dry weight which may be variable too, additional weight, setting target weight to be drawn in each dialysis treatment despite my normal inclination of habitual lifestyle (meaning greedy for enjoying tasty food still) for which I like to remain as is where is condition & enjoy my life-journey to a maximum personal standard or level if possible provided of course my blood testing category value is within the normal range of trend plus I am fitter & stronger in most of my usual outdoor events or activities.
The only slightly out of control is on Monday as I am on 1-3-5 noon shift. Here I am talking before dialysis weight of 1-3-5! My average of additional weight for alternative day is averagely about 1 kg. So it works out an average of 2 kg on Wednesday & 2 kg on Friday but 3 kg+ on Monday. This is merely an average figure as a talking guideline! The blood pressure normally is low on Wednesday & Friday but slightly higher on Monday due to higher toxic & fluid contents building up in the body after the 2 days on weekend. Only on Monday my blood pressure can possibly slightly higher but unlikely over 140/80. If, with this slightly higher blood pressure on Monday, it is no much of a problem to draw more than 3 kg of additional weight then. As a result I was medically advised not to take any high blood pressure tablets then onward since many months ago. It is coming near to more than a year already. However the rest of most days in a week the blood pressure could possible drop as low as to below 100/60. Anyway so far so good! I just need to slow down my body-mind’s functional pace & be mindful every step I am moving along, be it in walking standing sitting or lying posture etc at home or outdoor. I was told/advised it is okay as long as I do not have dizzy feeling or fainting feeling. However sometime I do feel very light but I keep cool calm steady & mindful. To me mindfulness with sole awareness is the key to keep my overall body-mind system in its best stable state at all times or circumstances!
During the dialysis process if the blood pressure is low then the target to draw my fluid will always be adjustable to a lower reading of target. My maximum target lately was about 3.5 kg only happening once in blue moon on Monday provided my blood pressure is higher level too. By the way my highest target was 3.8 kg last year. That had given me an incident or some problem. Nowadays it uses to be around 2 to 2.8 kg on Wednesday & Friday anyway. My minimum target is slightly below 2 kg but it is very rare occasion unless I burnt out more calorie such as for more daily activities for example regular exercise & or frequent outings etc. It is very good & comfortable feeling if I can maintain at below 2 kg additional weight but I need to control my diet & life-style & that’s a little bit of restriction there. That’s what how & why I feel at the moment.
Going through the pro & con of the additional weight at alternative day I begin to learn & aware the fluid taking is my main problem of ALL. I always fond of drinking more cups daily yet I feel stronger with fitness apart from the low blood pressure which is the side-effect may be. Off & on I am still having urine but not much though. Morning perhaps a little bit more! As long as I can manage the minimium stress & strain of my body-mind system within the standard category value range I am very happy-living already! I estimate I drink more than 1000 ml of fluid a day. I have to control to drink lesser if possible as the NKF dietician advised me for about 600 to 800 ml fluid taking a day also depending upon my urine amount as well. I am still struggling about my balance of diet especially about nutrition but it shows sign of improving very slightly for last 3 reading from 0.93 to 1.05 to the latest 1.09 of my NPCR value. Another thing is my thyroid IPTH vitamin D injection had been increased by an extra injection weekly since about 2 months ago. I believe this thyroid IPTH is likely the side effect while patients subjective to while doing dialysis treatment.
I once kept on asking & or making enquire about the efficiency & effectiveness of a natural kidney vs transplanted-kidney together with the dialysis system. But no one give me a direct or convincing answer yet! I guess it is not easy to measure & or answer directly as they are subjective for various conditional factors as per individual patient due to complicated of body-mind system. Therefore I am trying to make a rough calculation about my own urea & creatinine levels of reading instead which stated in my bi-monthly detail report! It is indicating before dialysis & post dialysis treatment readings. The machine can actually knocked down about 3 to 5 times the value of urea & creatinine reading while at same time can clear off my additional body fluid by appropriate 2 to 3 kg depending upon the target setting & the body-mind response & condition at each session of dialysis treatment. This perhaps can possibly give me a clue or hint or indication somehow somewhere how effective the machine had done for my own personal blood cleaning task or job. By knowing understanding & realizing them as my personal statistic data I am able to somehow controlling my own body-mind system along my existing journey after all this very body & mind it is belonging to no one but me. The rest I leave to the professional in Singapore medical field & clinic at NKF.
As for the machine operation it is not so important at the moment for me unless or until I have decided to have home-dialysis one day which I need to be solely independent to master operating the machine too. However, it will be very nice to ease off nurses’ job by means of independent at the clinic & that perhaps will cut off overall manpower costing & effort at the clinics too. After all it is solely direct ground relationship between us as patients’ own physical body-mind & the dialysis machines. At the moment I have to still soley rely on NKF clinic & the nurses & renal doctor. Therefore I feel the most difficulty tasks likely to be the needling schedule process & final gauze wrapping job.
As the medical science & data technology so advance today, I hope & I wish I am able to keep learning along my brief life-journey till my last breathe on earth in order to get satisfaction with happiness in term of overall education culture & value not only for myself but also for my children my next generation, my siblings relatives & friends as well. Also I am attaching with a long & winding 2nd home journey too - no choice lah! Perhaps one day when we have completed the overall national project in medical health matters or health-care business such as nursing home or community hospitals etc nearby our respective housing estates then that may further benefit to us & our younger & well educated generation of Singaporeans. They may have great leverage of advantages when one works hard & put effort by keeping on learning/training/practicing along one’s journey as well as self-independent too. It is like self-services auto-machines everywhere in Singapore today. You only need/require minimum of technical manpower & maintenance skills to keep moving on...
I also manage to negotiate with nurses about the position or location for actual needling schedule & same time to describe the penetration feeling so that the nurse & I are able to mutually synchronize both feeling in term skill & overall mannerism. My feeling of description will add confidence about my AV Graft condition at that particular right spot too. Coming on this 1st November 2016 on Thursday next week, I will be visiting my renal surgeon & specialist at SGH for checking & reviewing my AV graft condition after 2 years of dialysis treatment. This is solely arranged by NKF DC’s nurses as I have some clotting around or at some part of the AV Graft because the blood rate flow at AV graft spot sometime is rather high too with some clotting blood appearance while needling schedule on few incidents.
For months I have brought along my own blood pressure device for convenient easy & frequent checking my own blood pressure as I need from time to time or case to case basis. This one way to read my body response to the dialysis treatment that is going on. The nurses only take on hourly basis on manual basis. I need it badly because my blood pressure quite often drop to low after 2 & half or 3 hours of each dialysis session. It is always happening that way! If it drops below 110/60 I will soon surely begin to feel a little bit of my body’s stress & strain symptom arising such as cramp or pain around the legs then travelling toward my abdomen portion! They are initially very subtle & if not mindful you hardly will notice or aware of it! The nurses normally will adjust the machine in due course to ease off any bodily or mental stress & strain. I have alerted them quite earlier lately instead of pending the machine giving alarm or signal. It is so nice to know your own body-mind system & you can have smooth sailing of dialysis life-journey comfortably too. That is one way of building self-confidence with awareness!
Today I am glad & happy enough that I will not waiting till the machine giving alarm or signal. Unless I am in resting or sleeping or not mindful or aware of it. As such if I do pending for the machine to give alarm I may end up sudden attack of cramp or pain (similar like those young days when I was a sporting boy or adult in the outdoor field) upon merely slight a turn or twisting movement of my body or legs. It is so sensitive indeed! This is my personal experiences on my own body-mind system at the moment during the process of 4 solid hours sit still posture at or on dialysis treatment station.
The other day my initial blood pressure before dialysis began was 139/78-67 on standing position while blood pressure was 126/72-67 on sitting posture (on 24th Oct 2016 last Monday, so the target was set at 3.5 kg). When I purposely checked my blood pressure, it dropped to 109/66-65 at the last 10 to 15 minutes toward the end session of dialysis treatment, I felt something happening on my stomach already. This is one of few areas that I am quite happy to gradually learn understand & realize with awareness on my own body & mind game during the 4 hours of dialysis treatment. Once I am able to understand better with awareness about my own personal body & mind game I feel much more comfortable & confident to keep on moving along the journey ahead. It is like driving a car you are the master at steering wheel & everything is within your control what you want to do & what you do not want to do along the road map right in front of you. For 2 years I have been managing to learn & pick up a thing or two about dialysis treatment knowledge though I am still far behind as far as its medical theories or knowledge are concerned. My family is quite satisfied & happy enough with my present progress in the clinic as I try to be independent in most of outgoing events or activities.
Comparatively I am still far behind than those experienced patients who are old timers with discipline about their well control & balance in diet plus regular exercise with proper medication in their respective well lifestyle mannerism. I truly admire those who have kidney failure & still keep on working either partially or fully. Some patients I met have more than 20 to 30 years experiences of dialysis treatment. They move around so lightly like dancing on the floor! I have yet many things to learn & pick up along my personal dialysis experiences & it is a broad topic to talk about. It is truly a lifelong learning topic with so advance of skillful hi-tech & data technology! The key here I am trying to stress is to try to be SELF-INDEPENDENT whether partially or fully in or on DIALYSIS TREATMENT whether at home or at clinic! Learn your own body-mind system in respect to the beautiful baby machine being invented you are relying on till you find an alternative solution for the best-bet in your own living lifestyle.
Thank you!
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