Sentiments of a dialysis patient….
This time last year, I was diagnosed with a kidney failure. I found it very hard at first to accept this, everything has to change including the fact that I have to adjust to an extremely busy job that I love to doing so much less. However, as days passed by, I’ve begun to accept this new normal life that has been bestowed upon me. Balancing the medication, dialysis, doctor visits, blood tests and so much more has become a way of life. Truthfully, I have no idea how long this can last, the only hope that I have apart from a sudden miracle is a kidney transplant and this is not as easy as counting stars but hey I’m holding on to faith! Having this condition, I have taught so much that I want to divulge the real impression I have as a dialysis patient.
When someone asks:
When someone asks me, how are you? I don’t really know how to respond it’s not as if hey! I am having dialysis sessions twice a week and I’m okay about it. Of course I am not okay, it is never ok. I wish to get better and I worry that I can’t have my old life back and I worry ‘coz I can’t help it but of course I try not to let it get the better of me because having this illness, the most needed quality is to have that right attitude, acceptance and discipline and always remind myself to never give up as God is always with me. So the next time you see a chronic patient like me, avoid asking them this question because they don’t need to feel how have things went wrong and faking an “I’m okay” answer only makes them feel worst.
I am confronted with a long list of strict renal diet which I do not really follow because eating foods with less taste is boring. I love to eat, although it doesn’t show with my physique I do love foods and I love delicious foods. I feel irritated when someone reminds me of my diet when I am just beginning to eat. I try to discipline myself on this matter but restraining myself from eating the foods that I want feels so much like a punishment to me and I do not want to punish myself so don’t go scolding me. Hey! I am trying really hard….
Being friends with other patients:
I like having conversations with those dialysis patients having the same age bracket as mine as it eases my misery because it’s like something is reassuring me that I am not alone and someone is also fighting the same battle as I am going through at the moment. I also gain day to day tips on everyday problems. I love it when I see a patient wearing a smile on their face despite what they are currently going through. I’ve known of a patient who takes everything as if it’s all a joke but despite that her attitude is spot-on and I admire her for all her honesty and how strong she is despite the wearies she’s confronted with, I’ve become close to this patient overtime and like myself, I wish her well. I also love it when a patient opens up that I learn different bits and pieces from their experiences. You see, worries are always less when shared with a person who understands.
I don’t know how each of the family members is holding on to this but I am aware how difficult the adjustment is for them. I used to be the breadwinner of the family and now I can’t even help them through our financial difficulty. There’s just a little income and too much expenses specially my medical expenses and this is what’s dragging it all down to adversity. Good thing we can easily adjust to adversity ‘coz we’ve been there, I just hope and I’m looking forward to the day when everything is through. Hey, there’s always a light at the end of the tunnel no matter how long the journey is. One thing that I am thankful for is that they are by my side no matter what the situation is and I am so blessed to have them although I don’t always say it I’m thankful to have my sisters, my parents and all the relatives who gives a helping hand every now and then.
It is true what they say, that you only realise who your true friends are in times of adversity. But lucky for me because I thought I had only few friends turned out I have so much. Thanks to all those people who keeps cheering me up, those who shows concern now and then and those who did me a hell lot of favours through this journey. The help and concern that I have been getting now and then from y’all since last year was amazing and I can’t thank you’ll enough. You’re all God sent. I sometimes can’t be with you on your celebrations or special occasions because of my medical condition but you know you’ll always be in my heart (and y’all know who you people are)… someday, I will be able to return all favours.
There’s a medical team behind this that I have to deal with, they are my Nephrologists, Dietician, my doctor’s secretaries, dialysis nurses, laboratory nurses and my favourite… myself, the patient haha.
Let’s start with my dietician: well I just met her few times giving me hand outs about my renal diets which I never really read, advices which I never really understood and supplements which I never really take. Haha
Laboratory Nurses: I only get to meet them once or twice a month depending on my condition but I’ve managed to know some of them and some gained my trust, I usually look for those people when I’m being examined. They seem so friendly and whenever they extract blood from my veins they seem to be enjoying it and that actually scares me haha. I like the fact that they always make me laugh, it lessens the tension that they are about to stab me with a needle and the fact that they want to hear my story over and over again haha… but with this, I also hope as much as I like the laboratory nurses I would also like the laboratory results haha..
Dialysis Nurses: these people are a part of a larger responsibility to monitoring us patients throughout this process. I have to deal with them two times a week and four hours each session or more. Of course I consider their profession very rewarding, they are the frontliners to saving our lives on a regular schedule of treatment. I have seen them work their tail of with sometimes 16 hour shift straight, they just keep adding patients. I do have a love and hate relationship with them as they are fun and they make me laugh but after a while when some of my simple requests like change of schedules are not met I want to strangle them haha, just kidding. There’s just one thing that I wonder about out of curiosity, how they are coping up when a patient they’ve grown close to suddenly passed away, of course I know that they are not supposed to be personally involved and I’m also aware about professional boundaries and information’s that they are not supposed to disclose but still I wonder how they cope up with it…. but then again this is none of my business. Although I don’t always say it I’m thankful that despite the fact that I can be a really annoying patient sometimes, they seize straight back to nursing me and that’s a good sign that they are good quality nurses. I’ve come to realize that their job isn’t just about the money but the passion one has to give back to someone that can make a difference to someones life from day to day and having this difficult job, I give them a lot of credit and a lot of respect.
My Doctor’s Secretaries: What I hate the most is when I cannot reach my doctor through her personal contacts and have to resort to her secretaries to be able to reach her. She works in four clinics and it’s really annoying to line up every now and then just for a check-up but I am also aware that it is a hospitals protocol so I try to go by the rules.
Nephrologists: I’ve had about two nephrologists before landing into a descent and honest one. My Nephrologist, she is one to admire. She is the decision maker into this life sustaining treatment that I have. With my experience, her decision, attitude and wit are the reasons why I gave her my trust. She wants me to get transplanted for me to be able to relive my life like I used to, well at least there is a way for me to get better no matter how hard it is, even if I have just a strand of hope to get well, then I’d take it. I also thank her for always being frank and letting me understand what’s on the table because if I don’t I wouldn’t be alive right now.
The Patient: I am writing this blog right now because I’ve got the news today that one of my favourite dialysis patients passed away. RIP Ate Aileen. Being a patient myself, to keep strong and tackle all symptoms that comes out each and every time is not an easy task but it is a challenge we must face because we stand no choice. A friend of mine once told me, God gives his toughest battles to his strongest soldiers. Indeed, am I that strong to be given such a battle where the only way out is a miracle? But still I have to believe in miracles, right? They sometimes come true. Over time, I have seen a lot of different scenes when I’m at the centre and the worst part is to see them die while having their medication. There are just few of us young patients who are still in hope to get well and majority part were patients probably waiting to die. Well… without this treatment, all of us would probably be dead anyway so kudos to science haha. Indeed, as bad as I make is sound, I have learned a lot from different people and I’ve grown accustomed to seeing scenes like these now. It makes me realize the true meaning of living. It makes me realize that none of these will matter in the end, no material things, that bad break up you once had, that stubbornness, that bitch whose giving you a hard time, the moving on, the success you once had and on and on…. None of them matters… because in the end it will be about the maker and you…. It will be about how you made HIM feel…. In judgment, your true worth is how you valued others.
By: Rhiana Jay Ruiz : 4/29/2015