I would like to thank Tom Petty for the title of my blog. Hey, I give credit where credit is due. The thing about dialysis is that there is always some kind of waiting going on, I should rephrase that, when you have kidney disease there is always some kind of waiting.
In the beginning, when you find out you have kidney disease you wait to see what kinds of meds will help, you wait to see how much time you have before going on dialysis and so on. My waiting has ebbed and flowed over the years. I have had kidney problems for the better part of my adult life and probably even younger. My doctors waited a good long time before deciding to biopsy me to determine what I "really" had. However, once they did, and realized I have a kidney disease with a really long complicated name, my waiting to get on dialysis was now at as long as it was originally stated to be. I kind of went from oh 5-10 years till dialysis and transplant to 6 months.
I don't like waiting, I tend to be a bit impatient ( for those of you who know me can insert your comment here) I suppose most people don't like it either, but then why do we say "good things come to those who wait"? Just sayin'! So now I wait, a lot. I wait to go in to dialysis, I wait for it to be over, I wait for doctors, I wait in waiting rooms, I wait for my fistula to work better, I waited to get the catheter out (YEAH!!! IT'S OUT!!!) I wait on a list to get a transplant. I wait, I wait, I wait.
Waiting on a transplant list is like waiting for a train in front of our house. Obviously it is not coming. (unless you live at the train station ;) Not to say that transplants aren't occurring everyday all over the world, but sadly in New York State the wait time for a standard donor for someone on the transplant list is 8-10 years. Yes, I said that correctly, Michigan 6 years, Colorado 4 years. That means that you should get on the list before you have kidney disease so by to the time you need it will be available. Talk about waiting, for someone like me, all that wait time is time on dialysis. I don't know about you but I have no intention on waiting on a transplant list on dialysis for up to 10 years. Remember what I said before, I am not a patient person.
So what's a girl to do? You search, you look high and low, turn over every rock and ask anyone and everyone you know who could possibly be a match to donate a kidney. Sure sounds simple, it's not simple but its doable. You got 2, you only need 1, isn't that cool how that works out. Neither of mine are up to snuff so why not consider sharing. Didn't we learn that in kindergarten? Sharing is caring.
I have plenty of information on how to share to with me, or maybe someone else you know who needs to stop waiting. There are organizations like the National Kidney Foundation who can help you understand what being a kidney donor entails. And there are plenty of organizations out there that help find matches for people. I know someone who at the end of this month will be part of a 16 person chain for donation. Isn't that amazing. His wait time is over.
I am still waiting, I hope for not much longer.
Wednesday, May 22, 2013
Tuesday, May 14, 2013
What Goes in Must Come Out
I hope all the Mothers out there had a lovely Mother's Day. I did, I had great walk at the beach with mu husband and boys, watching my boys look for cool rocks and sea glass is one of my favorite times. They get along, I can sit back and enjoy the sun and breeze and they bring me random things to look at that are so exciting to them, they think it is some cool treasure. That's what being a kid is all about. It's nice to look at the world through their eyes once in a while. We had a great dinner with family at a little Italian place we've been going to for years, and getting to hear Sal the crooner sing the Sinatra classics during my eggplant parmigiana was an added bonus.
So onto the matters at hand. When I started this journey called dialysis I didn't know the half of what I was in for. And to quote my vascular surgeon " you were angry and very very sick when we met in September" you just didn't know what was expected. My husband said if the doctors told you the truth about all the things they would have to do me I would't show up, no one in their right mind would.
So I got in the front car, strapped on my seat belt, pulled the roll bar down and held on for dear life for the roller coaster ride I have been put on. Getting the catheter for dialysis was the first loop. I have been hanging on stuck in this loop upside for the last 8 months. FINALLY after many dips and turns and more loops the fistula access in my arm is working well enough to get the catheter out of my chest. No more! Adios! Good riddance!! I made it safely back on solid ground with nothing more than a couple of stitches.
Now I am not saying that this is over, oh no, far from it, but I have graduated, so to speak to the
elite class of dialysis patients, the needles only group; but on the other hand, THERE IS NO GOING BACK! The fistula is the only game in town, no back up plan or safety net. It is just something else to get used to. And my semi-permannet sharpie tattoo on my arm drawn to indicate where they can stick me will be a nice fashion statement in the summer when sleeves are optional. Yes that freaks me out! But that's what XANAX is for ;)
I hope that from now I only ride on the kiddie coaster, I don't want to hang upside and do loops and twists and turns. I don't mind the little dips and hills, I can handle that. In the meantime on Thursday I will be taking the longest shower human history!!!
So onto the matters at hand. When I started this journey called dialysis I didn't know the half of what I was in for. And to quote my vascular surgeon " you were angry and very very sick when we met in September" you just didn't know what was expected. My husband said if the doctors told you the truth about all the things they would have to do me I would't show up, no one in their right mind would.
So I got in the front car, strapped on my seat belt, pulled the roll bar down and held on for dear life for the roller coaster ride I have been put on. Getting the catheter for dialysis was the first loop. I have been hanging on stuck in this loop upside for the last 8 months. FINALLY after many dips and turns and more loops the fistula access in my arm is working well enough to get the catheter out of my chest. No more! Adios! Good riddance!! I made it safely back on solid ground with nothing more than a couple of stitches.
Now I am not saying that this is over, oh no, far from it, but I have graduated, so to speak to the
elite class of dialysis patients, the needles only group; but on the other hand, THERE IS NO GOING BACK! The fistula is the only game in town, no back up plan or safety net. It is just something else to get used to. And my semi-permannet sharpie tattoo on my arm drawn to indicate where they can stick me will be a nice fashion statement in the summer when sleeves are optional. Yes that freaks me out! But that's what XANAX is for ;)
I hope that from now I only ride on the kiddie coaster, I don't want to hang upside and do loops and twists and turns. I don't mind the little dips and hills, I can handle that. In the meantime on Thursday I will be taking the longest shower human history!!!
Tuesday, May 7, 2013
Dressed to the Eights
I apologize for the delay in this latest installment but Candy Crush has taken over my life, I am thinking of starting a support group, anyone is welcome ;).
So you are probably confused about the title of this blog. I would like to thank my mom for the title, I had a different one in mind but she came up with this. You know the old saying "dressed to the Nines", well obviously this is not that! Let me elaborate. When you go to dialysis you are there for the long haul. It is important to be as comfortable as possible since you must stay put for 4 hours. The variation in comfortable dialysis clothes is quite interesting as one might think. One man's comfy is not the same for all.
I have my dialysis uniform as I like to call it. A variety of black yoga pants that have never once seen the inside of a yoga studio, a tank top or t shirt with a V-neck (need access to chest catheter easily if you have one) and some lightweight long or -3/4 length sleeve shirt. When you have a fistula access in your arm you need to have your arm exposed the whole time. Can't wear a heavy sweatshirt or the blood pressure cuff won't fit comfortably. I have a variety of colors that I can mix and match. I always match and coordinate, cant stand to leave the house if I clash!
On the other hand there are some patients that have adopted there own version of a dialysis uniform. I have seen it all people and it aint pretty! There are the sleeveless folk, I am not referring to tank tops, I mean the people who literally cut the sleeve off of 1 dress shirt to expose the arm needed for dialysis. I kid you not, You can imagine that this would mostly be men who do this, but no, sadly there are a few less than fashion forward woman who lop the arm of the shirt and call it a day.
Then there are the slicers, those that slice an opening in the front of a shirt to allow for catheter access. So they sit for 4 hours with a gaping hole in there shirt with tubes hanging out, not pretty. There are many elderly people on dialysis and I have learned that becoming old means you are cold all the time, so most of the winter we were all bundled up, well some of these nice people are still bundled up. They wear hats, gloves, long johns! Not joking! Pajamas with slippers, oh and my all time favorite is the socks they give you when you stay at the hospital, the beige ones with the no-skid marks on them.
It is most amusing to see the parade of torn and worn dialysis uniforms. I have gained a new appreciation for my wonderful sense of style and fashion ;)
So you are probably confused about the title of this blog. I would like to thank my mom for the title, I had a different one in mind but she came up with this. You know the old saying "dressed to the Nines", well obviously this is not that! Let me elaborate. When you go to dialysis you are there for the long haul. It is important to be as comfortable as possible since you must stay put for 4 hours. The variation in comfortable dialysis clothes is quite interesting as one might think. One man's comfy is not the same for all.
I have my dialysis uniform as I like to call it. A variety of black yoga pants that have never once seen the inside of a yoga studio, a tank top or t shirt with a V-neck (need access to chest catheter easily if you have one) and some lightweight long or -3/4 length sleeve shirt. When you have a fistula access in your arm you need to have your arm exposed the whole time. Can't wear a heavy sweatshirt or the blood pressure cuff won't fit comfortably. I have a variety of colors that I can mix and match. I always match and coordinate, cant stand to leave the house if I clash!
On the other hand there are some patients that have adopted there own version of a dialysis uniform. I have seen it all people and it aint pretty! There are the sleeveless folk, I am not referring to tank tops, I mean the people who literally cut the sleeve off of 1 dress shirt to expose the arm needed for dialysis. I kid you not, You can imagine that this would mostly be men who do this, but no, sadly there are a few less than fashion forward woman who lop the arm of the shirt and call it a day.
Then there are the slicers, those that slice an opening in the front of a shirt to allow for catheter access. So they sit for 4 hours with a gaping hole in there shirt with tubes hanging out, not pretty. There are many elderly people on dialysis and I have learned that becoming old means you are cold all the time, so most of the winter we were all bundled up, well some of these nice people are still bundled up. They wear hats, gloves, long johns! Not joking! Pajamas with slippers, oh and my all time favorite is the socks they give you when you stay at the hospital, the beige ones with the no-skid marks on them.
It is most amusing to see the parade of torn and worn dialysis uniforms. I have gained a new appreciation for my wonderful sense of style and fashion ;)
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