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.
For those who are unaware of how a transplant works and I am one of those people, the road is a tedious and very surprising one. The steps required for you to so much as be considered for the transplant list are mind boggling. Two weeks ago I took the first step toward my evaluation which I told you all about. I spent four hours at Saint Barnabas Medical Center at the pre-transplant department just speaking to people and learning the aspects of transplantation. I have to tell you these four hours are nothing if not thorough on explaining everything you have to do to get your organ. You speak to doctors, nurses, dietitians, and insurance specialists on every side of the spectrum. Pre-op and post-op, everything is covered which is both reassuring and daunting but I’m ready so you can believe I listened with open ears and eyes.
After all of the conversations were done it was time for some of the litany of tests I have to pass in order to be considered a viable candidate for transplant surgery. This has nothing to do with who will give me the kidney or how I will get it, this is simply to evaluate my health.
Did you know that after going through all of this if there is anything else wrong with you, you can be denied a transplant? If you have heart issues, cancer, diabetes or anything that can affect your health in conjunction with kidney disease you can be denied. Hows that for nerve wracking?
Did you know that post-op anti rejection medication costs about 2000.00 a month? Holy!!
Every test is like a hurdle you must clear before the far away finish line. The tests on this particular day were a chest x-ray, an electrocardiogram, a physical and some blood tests. You have to undress more than a stripper on call but I did them all and gratefully passed this battery of tests with good results. There are quite a few more to come in the upcoming future, one being a stress test which takes up-to four hours! Yikes! I don’t know how ready I am for that but I am ready for my kidney so I will e going for it. Wish me luck cause I’m running for that finish line!
It’s funny how your perspective on life can change in a minute. I am not ashamed to admit that once upon a time not too long ago I was certain this disease would kill me. I was sure because of all I have been through with this illness that I would eventually loose the fight. You see what goes on during a dialysis treatment is very precarious. The human body was not meant to take such punishment over such a long period of time and I have been on this road for over five years now. Aside from treatment I have suffered serious illnesses that have also put me in the hospital like c-dif and infiltration to my veins. Worst of all too much fluid was once removed causing excessive cramping in my body enough to require morphine to help with the pain. For those who don’t know why cramping can be so dangerous it’s because your heart is also a muscle and it can fail and cause severe heart attack if it cramps. Therefore you are rushed to the hospital because dialysis centers can not treat you for any other medical conditions and can only administer Tylenol for pain.
I know that anyone who has ever been in a position where they feel their life threatened can become quite vulnerable and afraid. When you get sick like this and it lasts for this long it takes a toll on mind, body and spirit. Everything comes into question. You even wonder what you are paying for especially after dialysis when you’re wracked with pain and no one can really help you. The pain is where no one can reach so you bare it. Week after week, two times a week, year after year waiting for the light at the end of the tunnel. You see friends from your center give up and pass on and you cant help but wonder will I be next cause I’m tired and this hurts.
About two months ago I had the greatest fear I have ever experienced. I woke up with half of my face numb. When I looked in the mirror I noticed the right side of my face would not function. Immediately I thought I had suffered a stroke in my sleep. Along with the pain behind my right ear I was sure my days were numbered if I didn’t get to the hospital quick. I am a functioning panicked person though so with tears in my eyes I wrote a letter to my children in case I didn’t make it out. I stated every reason why I love them as much as I do as a whole and individually. I told them what to keep after I was gone. I told them it was ok to mourn but not forever and to take care of each other and remain close. I still have this letter because by the grace of the universe I am still here, fighting.
At the hospital I was grateful to learn that what I had contracted was called Bell’s palsy caused by limes disease which I didn’t even know I had. Sometimes you don’t get a bullseye or an itch where you’re bitten. This was the reason for my numb face. I had never been so happy to hear anything in my life. This was surmountable. I could get through this and be ok but it had also changed me. I had gained a new perspective and things began to change in me and in my life. The insurance I had fought for to make my transplant possible finally came through after almost three years. I now have the possibility for a normal life that won’t be wasted once I have it. You can bet on that! I often tell my doctor that once I receive a transplant they will be able to give it to someone else when I die an old old lady because that’s how well I will care for it. I will not squander the gift I will be given and I will be grateful every day for it.
Today I am still in the fight but with new armor and I will win this fight. I have dialysis today but it’s no longer a death sentence for me, now I see it as a stepping stone to recovery. A way to keep me healthy while I wait for my deliverance. This illness has taught me just how strong I can be under difficult circumstances. Nothing will ever seem too difficult for me again. If this is to be my trial I will stand and face it. After all I can finally see the light at the end of the tunnel and I will walk every step until I’m free.
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’m sitting here wondering just that. Why do I blog? Why bother when most of the time no one even reads it. Many times you feel like you’re talking to yourself and no one else is listening. It really makes you wonder why you even set aside the time to write. Then I ask myself why do you blog Ellie? Is it about ego and how many people read it or simply about you and what you want to say?
After a long while in deep thought I decided that I blog to keep my mind clear. I blog to reach that one person going through whatever I am going through,who has no one to talk to and to give them a little hope but most of all I blog for me. As a life blogger it’s a record of what matters to me. A record of my unique experience. I like to see my thoughts on screen or paper laid out bare. I am the queen of self expression and if I didn’t write I would not be happy and that is why I blog. The right person will always read it.
Changes are something that seems to come weather you want it or not. Sometimes you see it coming, the necessity of it loud and clear.
The time has come for change.
It can be any type of change for anything and still take you by surprise and be completely unexpected yet somehow you know. You know when something is not working and when it needs to change, when you need to change.
- How do you take those first difficult steps to make effective and lasting change?
- What gives you the strength and purpose to move forward. You must be brave, I find.
You must be willing to do what you must without fear of how it will affect anyone else or their situation. I am not speaking of cruelty here or of not caring about people in general. I am speaking of doing what’s right for you. What makes you happy and leads you toward the purpose you find you are here for. Those are the greatest questions one must ask.
What makes you happy? Why are you here and what is your purpose. What do you want to get out of this life?
These questions have been plaguing me as of late. Breaking my concentration every time I find myself in a situation I know I don’t want to be in or doing something I don’t want to do. That’s where the knowing begins to surface and grow like a weed in your psyche. Making you unhappy. A symptom of being in a situation you don’t want to be in. A flashlight if you will on what you need to change. Those are poignant moments of clarity and we need to listen clearly and openly because they’re doors to we need to go through, roads we need to follow. Breadcrumbs in the forest of our destiny.
Lately I have been reading a lot about getting myself and my writing together, specifically my life and my blog. Both seem to be at a standstill lately. For some reason after the loss of my job I can’t seem to get it together. I love to write and get my thoughts across so I never understand why I slack off or procrastinate about doing the things I actually love. I love poetry and I so enjoy writing it. As for regular writing such as this blog, I really enjoy that too. I mean I have a few hobbies I am completely obsessed with like my art journal, my happy planning and my regular journal writing so I never get it when I begin to ebb with the things I love to do so much. I am still trying to figure it out mostly because I don’t realize I’m sabotaging myself until it’s well under way. It’s like a slithering snake this procrastination thing.
You know when you’re working all the time and curse the fact that you never have enough time to do what you really love to do?
Well, when I was working I was always frustrated about that fact. I always told myself that if I ever had the time I would write and journal all day. I would spend my whole day being creative. What baloney. I have been jobless for close to two months and I can’t seem to motivate myself to do any of what I always bitched about before. I sit tired from doing nothing yet unable to build the enthusiasm to do what I always spoke of. I wonder if I have some form of delay maybe it’s the “maybe later” disease that everyone acquires when they believe they now have all the time in the world. I’ve heard of people becoming depressed over life circumstances and not even knowing it or feeling what are regarded as symptoms of it. I don’t know really. I do know that I am certainly not where I would like to be in my life now. I also know I have to find my way out and into action all by myself. No one can fix you. As Buddha teaches: You must be your own salvation.
I am beginning with this blog and by writing lists of no more than five things to do at a time as to not overwhelm the senses. I figure this way the necessity to procrastinate will perhaps slightly diminish. I am hoping so anyways. I am putting my money on slow and steady. After all isn’t that what they say wins the race?