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.
Is not easy
The wheel you go around in has spokes
and is perfectly round, so hard to stop
once it gets rolling
trampling everything in its wake
even when you love it
you can still step on it
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.
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!
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.
I have been a mother for what seem like most of my life. My three, now grown children were the essence of what I did and where I went for now twenty seven years of my life and I would not trade it for the world. Seeing them grow has been my privilege and blessing. Being a parent gives you a new perspective on life and all its trials give you strength you never thought you might possess. Still life comes with changes and my greatest change has arrived, an empty nest! That trial that all mothers and fathers eventually go through after spending half their lives raising children. It isn’t easy trust me I’m sure there are many parent out there that have no idea what to do with themselves after their children have gone.
I was one of those parents. I was stuck in the role of being a mom and being there for my children was all I did. That’s what moms do and we don’t regret it one bit. I am very proud of all of my children and I am honored to have devoted my time to them, that’s why I had them. Still the time has come for me to write a better story for myself. It’s time to dream of a future of my own. There are still many blessings to look forward to. You, We still have a life to live. one that hopefully has many years left. As a woman I find we need a sisterhood of women to help us do this. A place to develop all the other talents we may have hidden or placed on the back burner to attend our loved ones. A group of like minded individuals to push us forward in our new adventure. We need mentors and a process by which to navigate and go to our destiny. This is your time!
What’s your story? What do you want for you? What is your dream?
Now, Go. Find it. Do it. Be it! I am with you.
When I think of you
There are no butterflies
Instead there is a feeling of drunkenness that does not allow me
I hear no songs of love or feel no woozy feeling
Of everlasting enduring bliss
Although I do feel overwhelmed by you
When you look at me
Responding to a question I’ve asked you
Two hours before
When I look at you
There are no double visions
Faint feelings of fainting at seeing the love of my life
Or shit like that
That only lasts about a Minute when people think they’re in love
Because when they don’t see you
It’s out of sight out of mind
And you stick to mine like glue
It’s when I feel you or taste you
That shit becomes real for me cause you’re
In my blood like a stream
In a really long song that you think will never end
And you taste like when you eat the best fruit ever
And wish it will never end
And that’s why I know this love is real
I don’t know about you
Cause you’re the one who gets inside me every time
I just float beneath or above you
Knowing there’s something potent there like
A warm home cooked meal on a cold cold day
when you swear your fingers will fall off from lack of heat
and your feet want to compete
with the rest of your body
on who gets home first
out of need to be around you
thats some shit
this love thing
but I still wonder