Posted in adventure, blogging, change, emotions, empowerment, faith, fear, feelings, healing, health, honesty, hope, illness, kidney disease, learning, life, recovery, self, transplant, truth, writing

Things to deal with: After the transplant road…

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Only a person who’s been on dialysis or the people they allow on their journey know what its like and all of the additional complications that come along after you’ve been transplanted. It is an ever going road pebbled with pot holes and detours as well as open smooth stretches. Still it’s one we rather be on than the one we were before. I am one year into my transplant, on anti rejection medications I administer every 12 hours and living life as best I can. I must admit it’s been pretty smooth sailing for me and I am mighty grateful for I have met too many people who’ve had a very hard time even after we think it’s supposed to be easy.

Today there is a hurdle. The access I have not used for over a year has decided to clot on me and it’s pretty painful. I informed my doctor of the issue and now I must see a cardio vascular doctor to see what can be done to open it up which might mean surgery, don’t know yet. For those who have been on dialysis it feels like when you’ve had an infiltration, so you know the pain is real. I’m dealing with it as most of us must and do on a regular basis. We find strength from within and from those in our corner. We travel the road trying to avoid the pot holes and pray for smooth roads. Today I was called a trooper by someone I love but I don’t see myself that way. I am simply a survivor who has adapted to jumping these hurdles because the good times are worth living for.

To everyone on dialysis out there, may your roads be smooth. May your hurdles be few and most of all may your moments worth living for be many. THIS TOO SHALL PASS.

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Posted in blogging, change, dialysis, empowerment, faith, fear, healing, health, illness, kidney disease, learning, life, love, transplant, truth, Uncategorized, writer, writing

The kidney is just the beginning: On the transplant Road

      

                 The last time I blogged I was still on dialysis twice a week two and a half hours a treatment. After six and a half years I was pretty much used to what my life was and how it was working out. Treatment didn’t bother me as much anymore and the pain was almost non existent or maybe I was just used to it. 

BUT THEN…

Just as I was all used to it on September 3, 2016 I received the call that has changed my whole existence. I got a kidney! My transplant happened when I least expected it. With a heart full of prayers for loved ones and friends I went to Saint barnabas medical center for my gift. On September 4 I had a new battery and ready to begin a new life with no more issues. But can you say hold up? 

Yes, we have no idea at least I had no idea that the transplant is just the beginning of the road. Not the end. The real work began after the blessing. 

Let’s talk about recovery shall we? 

I have been transplanted about three months now and currently in the hospital in a state I don’t even live in. I came to visit my mom for the holidays and my creatinine got too high so here I am admitted and awaiting. However I digress, I am still mighty blessed! Every day. 

When you first get a transplant you need your meds every twelve hours. The amount of pills vary from 20 to 30 Pills a day depending on how your organ is settling. See this organ was never yours. It’s a gift so you need anti rejection medications so you won’t loose it. You must work to keep it. This is why I say the work begins after the blessing. Along with medication comes recovery from a long suture on your belly. I had 20 some odd staples holding me together. Its difficult to walk but as the days go by you begin to feel better, more alive and healthier. My hair grew inches and my nails that never grew began to grow. My skin glowed and I became, though still recovering a new person. 

It is a difficult period in my life but full of miracles as well. I am getting there. Trust that I will. 

Getting used to the meds and the doctor twice a week in the beginning takes some getting used to. 

Blood work and urinalysis every week

Stint removal and fear of any little twinge on your access site wears on you but then you think about all of those years on dialysis and you’re mighty blessed and grateful despite side effects or anything else that comes along the most important thing to remember is that someone who died gave you life! 

This is a path. It has been my destiny thus far. I am on a road after all and I never forget that every road has hurdles and bumps and some even have mountains to arrive at the other side. This is my road and although sometimes it’s difficult and a trial I am fully faithful that God gave me this kidney and road for a reason. With his help, guidance and blessing I have my new battery and I’m ready to walk! 

Stay blessed and grateful! 

Posted in author, blogging, change, daily do's, dialysis, empowerment, faith, fear, friendship, healing, health, honesty, hope, illness, kidney disease, learning, life, love, plannerperfect, planning, recovery, stories, transplant, truth, writer, writing

Organizing my Life…On the transplant road

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          Many of you who know me or have read my blog know that I have been on dialysis for about six years now. But if you also know me well you know I have never once felt sorry for myself or have fallen into pity party mode. There are too many sick people, especially children that have not really even lived for me to be complaining about being on dialysis. I am strong and able, this is just a moment in time for me and I will surpass it. I have many ways of keeping hope alive. I always say I know God and he knows me and when he wants me there is nothing that will stop it so every extra day is  blessing. I don’t intend to waste it.

As far as everything goes I am now tissue typing with my brother to see if we are a good match. My older brother has decided to go under the knife for me! I am beyond amazed at his selflessness and I know I would do the same for him were the roles reversed. Every test completed is a new step forward on the transplant road. A new step toward a normal life. I take every step in gratitude. I have made many changes of late because I want to live an organized and simple life. I am all about order and organizing and planning . I love anything that makes my life easier. I love functional yet beautiful things. As a writer who loves her craft I adore fabulous planbooks to write in and make my plans for the day. It puts everything into perspective for me and in a much clearer light.  I am learning a great deal on this road. Things that I hope to pay forward once my journey is done. For now I will do the best I can with what I have been given and although I’d rather not be on this road I am mighty grateful to be here at all. No matter where I may have to walk on this road the point for me is that I’m still walking and that my friends is a blessing.

Posted in blogging, empowerment, faith, fear, healing, honesty, hope, illness, kidney disease, life, truth, writer, writing

Gaining perspective, on the transplant road

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.

Posted in blogging, change, dialysis, empowerment, faith, fear, healing, honesty, hope, illness, kidney disease, life, truth, writer, writing

On the Transplant road…

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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.

EllieBloo

Posted in author, blogging, empowerment, faith, friendship, honesty, hope, illness, kidney disease, life, truth, writer, writing

Room for Change

It’s not every day that you actually take the time to look at yourself. I mean really revise who you are and what you’re about in life. Most of the time we are consumed with life and our daily responsibilities, too consumed for deep thought and the excavation required to really know oneself, or so we tell ourselves. Today has been one of those days for me. I woke with a need for change. A desperate need to make something different of me. I look at my life and see clearly that there is something missing. Something that had nothing to do with anyone or anything else but me. I believe every need for change has only one common denominator and that is the person who feels that need. Every once in a while you look at yourself and the picture doesn’t match exactly what you think it should so the questions begin.

Now, before we get off on the wrong foot this is not about feeling useless or as I have no place in the world. I know I am much and have accomplished much of what I have been sent to this planet to do. I have raised three great kids and have done my share of good in this world.

I am a strong woman. That is who I am. I am someone who is impossible to control, it’s a complete waste of time for anyone to even entertain the possibility much less accomplish it. I am honest to a fault and I value my relationships ferociously. I am of sound mind if not so sound of body since being on dialysis has taken some of that, still sound enough and on the road to recovering that. I am a great many things just like everyone else with my own set of characteristics which makes us all individual. It’s how I’m seen by others that brings me to the page today.I know I am no weak soul. I have dealt with much and survive it well. I manage to keep smiling and living just fine with Gods good favor.

Still. Have you ever had someone describe you in a way that made you wonder who in the world they’re looking at? That is what happened to me today as I was questioning myself and analyzing where my life is and where the changes need to come in. I was speaking to a friend and this is their description of me.

” You have a passion that will carry a person with you. If that person can’t keep up they are left lost and stranded right where they are. You are an independent person so if that person can’t keep the pace you will move on. Moving on without that someone is not something a lot of people can do. Many people would prefer to be unhappy in an ok situation once they’re with the person they love than leave that person behind, hoping the rest of their lives that something will change. You make your own future, it’s not normal, it makes you dangerous to the hearts of mortal men”.

I was dumbfounded by this description. Never have I seen myself in such a light and still can’t wrap my head around it. I know some of these statements are true. I have no problem leaving a situation that hurts me or a person I can’t make a future with. I am very independent and I try to make my own future. I don’t know about being dangerous to the hearts of mortal men lol, but it’s a lovely thought.

Still the nagging need for change is persistent and I feel the winds turning. I have not done everything I am here to do and this is the quest I am on now.

Working is not enough.
Being a parent is not enough.
Being a writer on dialysis is not enough.
These things are simply incidentals of life and we are all accomplishing on a daily basis even if we don’t think so. Something is coming for me although at this moment I have not the slightest inkling what it might be. All I can do is hope to be ready when it comes.

To be the change I would like to see in the world and be worthy of such honorable descriptions.Peace.

Posted in blogging, book, empowerment, faith, honesty, hope, kidney disease, life, love, stories, truth, writer, writing

A series of prompts… If someone gave you a book and you realized it was a book about your life, would you read it till the end?

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.

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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.

Besides…

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.