If you are on the transplant road like I am the first thing you learn is that there will be hurdles to jump, plenty of hurdles. These hurdles will either make you run for cover or build you up to the point where nothing will break or tear down your resolve. I have been jumping hurdles since I first found out I needed dialysis in 2010. This post is bout my latest hurdle and I will need to jump big for this one.
As you all know I have been going through a battery of tests just to evaluate whether I am healthy enough to be on the transplant list to begin with. Most tests have been accomplished and I am happy to report, passed with flying colors. Well almost all. Last week I went for my first ever much dreaded mammogram. I know every woman is cringing at the word as I type and they have a perfect right to for it is an excruciating procedure. Lord in heaven it’s like being felt up by an enemy. The way they twist and smash and pull can only be described as a baker kneading dough but I did it. I was a champ for the cause but of course it never ends there. A few days later I was called to come back for as they put it, a second look. Can you smell the fear?
The call we all dread. Still I was told it’s routine because they have nothing to compare it to this being my first mammogram of all time so of course I go. This time certain areas are focused on, 3D scans are taken and even a sonogram is performed all during the same visit. Now I am nervous. Well as you might suspect by now something was found on my right breast. Two areas as of yesterday were biopsied and I am currently recovering at home. The biopsy was not so bad and I am currently awaiting my results which will be given to me on Monday. For some reason I am not afraid. Whatever will be will be and this is my hurdle. A new hurdle I will clear like all the others because that is my fate. I will survive in this life or the next. Fear has no place in me, it’s just not part of my makeup. As the hurdle gets closer I am preparing to jump and up is not such a bad place to go.
Everyone knows that I am on dialysis. I have been on it for a little over five years now. It hasn’t been easy in fact it has been a challenge and a trial for me. I’m sure that all of the people currently facing this disease feel exactly the same as I do. You merely exist while you’re on dialysis. Life becomes something only healthy people seem to experience. Our existence surrounds the need for treatment and when or where it will happen. We live from one treatment to another so plans for any other life experience must submit to the need for dialysis first. So here I am five years in but things are changing and I have decided to take you all on the road with me.
Yesterday was an all important day. After years of fighting with Medicaid I finally got the insurance I needed to get evaluated to finally get on the donor list. I am on my way! My evaluation went well. I spoke with doctors, nurses, social workers and dieticians. I still have to have many tests run before I am listed but the ball is rolling and that for me spells hope. The hope for renewed life. I took various tests while at the hospital yesterday. There were chest ex rays, blood tests and an electrocardiogram. Everything must be good before you’re even considered for a transplant. I must take optimal care of myself, I must be my greatest advocate if I want to be healthy again and I will be. Today is a dialysis day but today the light at the end of the tunnel is bright and I can feel its warmth on my face. I’m on my way.
I was sitting in the living room with my very intelligent daughter when she asked me this brilliant question. Sometimes I look at her and I’m so proud of the young lady she’s becoming and also proud that I’ve had something to do with it.
After the initial shock off the question I decided to give it some serious thought. Would I want to know how my whole life is to be played out right there in black and white? Facts on paper. Life and death and how?
My answer I would have to say is no.
I would not want to read about my whole life on paper before I have had a chance to live it. I would not want to know when i would be getting sick or how or when I would draw my last breath. I also would not want to know when or if I would lose a loved one. If dialysis has taught me anything it’s to love and live in the now. Nothing is guaranteed. No day is promised.
Can you imagine the kind of stress you would be under just knowing and waiting for the tragedies that might befall you? I mean I’m certain there would be enormous joys as well in your life but isn’t the greatest joy in the surprise of it all? What is the sense of living if you know everything coming your way? Still, it’s quite a poignant question so…
I ask you, would you read your story to the last page? Riddle me that.
We all have fears. Some overpower us and make us into a mere shadow of who we are meant to be, what we are meant to do.
Before my fortieth birthday I would venture to say that my fears were minimal. There were few things I could honestly say I feared besides my children’s safety, their upkeep or raising them properly. I honestly think it is inherent in all of us to believe ourselves invincible.
That is why we find it so difficult to accept death or illness. God taught us to create life and so death seems unnatural although it is not.
Perhaps it is the fear of the unknown that shocks us most. Not knowing where you’re going can be a powerful catalyst for stopping you in your tracks and shaking your boots loose.
Still, fear has finally found me as it finds us all some time or other. It has found me in the form of kidney failure and dialysis treatments. It found me in the form of needing a transplant.
My fear is not getting the kidney I need to keep living. That I will have to continue existing plugged into a machine twice a week until my body gives out. That my life will not be all that I know it can be. This fear has in turn has caused a snowball effect as most fears do. Once we fear one thing we open the door to so many other fears. Now I fear not seeing my children getting married, not seeing graduations or grandchildren. Fear of this disease and what it does to my body has made less of me but not to the point where I have lost the woman I am underneath.
Fear can overpower us, yes it can, but only if we allow it. It can transform us into shadows but only if we dim our inner light and stop holding steadfast to our faith. It can change us but it doesn’t have to alter who we are.
I fall into my fear sometimes still but every day is less. Every day I remind myself that I am not the only ill person in the world. There are people out there suffering of terrible ailments worst than mine without the love and support I am blessed to have. I know that as bad as this may seem at times I am here for a reason.
I am alive for a purpose. I have been blessed.
So if you find yourself in fear remember all of those things we forget when fear grips us in its icy hold. You are still here. You are alive for a purpose. Fear does not have you unless you give it permission so hold fast to what you believe and turn up your light.
And if all else fails, come to me and I will help you remember that you too are blessed.
This is a loaded question. There are so many things I wish I knew when I was 18 that had I known them my life would be unrecognizable even to me.
The greatest of those would have been slow down, nothing is that serious! You can cruise your life and do it right.
You don’t have to run.
Had I followed this knowledge perhaps I would have not committed half of the mistakes I committed in my life or at the very least I would have made different ones with better results.
I also wish I had known I had options in life. That I had better choices than the ones other people had for me. That I could be myself and my choices were mine to make. Had I known this I would have lived fuller and taken the world by storm much sooner.
I am still trying to take it though and that counts don’t it?
Still I would have explored the world.
Chosen many more adventures, seen many more sights.
Had I slowed down I would have waited to do many of the things I did way too soon like getting married at 18,having three children by the age of 29, or quitting college that I may have been a better, more educated parent for my children. Although I did the best I could and to this day I am quite proud of y sons and daughter. I still wish I had known that I could do better, for me.
Because I know that I could have been greater than I am now.
Still, I also know that everything happens for a reason. I know that I traded being a wiser mother for being a mother who was more open minded, virile and willing to learn from her children. As they grew I grew. I taught them and they taught me that I didn’t have to be perfect. That I was o.k. the way I was because I truly loved them.
I learned that I became a mom at just the right time because had I waited too long I would, because of my kidney disease not been able to be a mom at all and that would have hurt me more than any needle. So God had a plan after all and I am good with that.
So yes, I wish I had known a few things when I was younger but I guess that’s what youth is all about. Learning and becoming. I figure if we knew everything there would be no need to live and I intend to live with all my mistakes and success in tow.
All I can honestly tell you is to be proud of you. We have come this far and too many haven’t. Plus I am correcting one mistake this fall. I’m going back to college. And I won’t quit because this time my kids will be in the audience to see me.
I wouldn’t miss it for the world!
My addiction was an addiction that many people have and struggle with every day. Smoking. I was a smoker. I did not smoke two or three packs a day it was not that serious but I was addicted just the same. There were times in my day where I just had to have a smoke like after meals, when I woke up and before bed. At first I could curb the nicotine need but as you smoke for a longer period of time it becomes ore and more difficult to avert the desire to light one up.
I had always prided myself in not being addicted to anything or at least in being able to quit cold turkey which I did with smoking a few times when I got tired of it or the smoke made me sick. This time however proved to be more difficult. I had become so used to smoking that I could stop for a few days but as soon as I got that coffee at the store, the craving for a smoke would hit me like a bullet, never mind after I had lunch.
Do you think the need for coffee does something to a smoker that makes them want to smoke? I wonder but, I digress. As I was saying those were my hardest times and as the days become weeks you become weak too. I would go as far as to say that when you become addicted to smoking at times it’s all that will actually make you feel better. At times when I was stressed I would have a coffee and a smoke and all was well with the world.
Along came dialysis.
I think dialysis has been the bane and savior, in some ways, of my existence. One night I was out at a spoken word event in NYC. I had been smoking excessively and drinking red bull along with it. I don’t drink alcohol so whenever I went to an event where it was sold, red-bull was my drink of choice. The combination is what I think kick started my kidney failure.
I just knew something was wrong by the end of the night. I felt sick as I never had before and boy was I right. Suffice it to say that the day after I woke with a fever of 103 and two days later I had a catheter poking out of my chest and hooked on to a machine I had never before seen in my life.
Everything got real fast and smoking had to go but It doesn’t mean it was easy. There is withdrawal to smoking I didn’t expect. Dialysis did not stop the cravings but it did make me scared to follow through. I did fail two or three times but I will tell you that I paid dearly. You don’t want the feeling of smoking on dialysis and after I screwed up those few times and the after effects kicked my ass, I was done. I dropped the Newport habit like a bag of shit and kept it moving.
It’s been two years for me since my last smoke and I certainly don’t want anyone to have to quit the way I did but it’s my unfortunate story and so it is.
I haven’t become an advocate to stop people from smoking and this is not a blog about that but I do agree that if you can find something better to do with your lungs and mouth, I think you should go for it!
The smoke free dialysis patient 🙂