Take deep breaths

As a dialysis patient you are often faced with the challenges of extreme anxiety and sadness and physical pain emotional pain and it is sometimes hard to deal with these things.  Sometimes you don't even realize how difficult it is.  I spend most of my time trying to stay positive and stay calm but sometimes my emotions and the anxiety of being on dialysis and the unanswered questions as to when I would get a kidney transplant get the better of me. this week was a difficult week for whatever the reason, lots of little things went awry and I just felt like I was teetering on the edge and it was very hard to stay calm and positive and relaxed under the circumstances. So when I'm sitting at dialysis having all this anxiety the one thing that everybody says over and over again is take deep breaths and sometimes that helps but sometimes it doesn't and this was one of those weeks where just taking deep breaths did not help. There are too many unanswered questions in my head most of the time and not knowing when this trip, journey, experience whatever you want to call it is going to go to the next phase makes the anxiety that much greater. I know that I just have to be patient and keep taking those deep breaths and focusing on being positive and keeping a smile on my face. Most of the time works, so I guess I'll stick with that until it's time to go forward.

The Saga Continues

Hi there, I know, I know it's been a long time. You can say it you've missed me.  Well I've missed you too. I don't know why I stopped writing so abruptly and why it took so long to come back. But, here I am ready to share the trials and tribulations of being a dialysis patient.

To be perfectly honest not a lot has changed. I have to say this dialysis thing has become pretty routine. It is my job and so I get up and go, and when I come back I'm just a mom and wife. I still have to cook and clean and schlep and fetch and find and help with home work and all that stuff. Oh, I have one added benefit though, I do get to sleep and watch TV at my job (LOL).   It's a fairly mundane scenario.  For those of you who live in the Northeast, you know we had a lovely (NOT) winter. It was long, brutally cold, snowy and made my mood oh that much better.  It really sucked!!
I celebrated my 42nd year at dialysis, yeah that pretty much was the worst birthday ever! Happy Birthday! Allow me to stick to giant needles in your arm and lay here still for the next 4 hours.  Yeah the winter was difficult, but now that it is over and spring is officially in the air along with pollen and crap (insert sneeze). I am looking forward to sunshine, longer days, more time with friends and relaxing by the pool.

I guess this is my coming of hiding blog today. Don't get me wrong it isn't all bad. We are very blessed and my son made is Bar Mitzvah in the fall which as any Jewish mother knows it is one of the more dining moments in your life. And given my circumstances it made the celebration that much sweeter.  I did get to travel to Florida and go to Disney World again just in April, so I have got the Florida dialysis thing down pat. However after driving for 20 hours to Florida I had to go right to dialysis that wasn't fun.

I am still searching for a kidney donor. I am blood type B, but can receive from O as well. It is tough to wait for something and hope for something that you know you will get but have no idea when. I don't like open ended. I am a closure kinda girl. I like to know there is a beginning, middle and end. I am believe or not I am still at the beginning. A very long beginning, so far a year and a half. Yes, time flies when your having fun.

Random Thoughts that are not so Random

For those of you who know me personally, you know that I am making a Bar Mitzvah in the Fall. Very exciting stuff around here. Things are moving along swimmingly and then I just had a "random thought" what happens if I magically get a kidney donor. Well, you're probably think, "Are you a fucking idiot don't worry about the Mitzvah get your new kidney!!" Yes I know, when I really stop aand process things that's what I would do, without question.   My son would read from the Torah as practiced regardless of what state I am in, but the festivities would be postponed, and now Im thinking that what better reason to delay a celebration. It would be like my Bat Mitzvah and wedding redux!! That could prove to be even more exciting.  Sorry, rambling..

I warned, random thoughts:  Did you know that when a child tells you (and I quote) " I am a difficult child to parent" you should run screaming! Yes my own son told me that the other day. I am pretty sure I should just give up now, because I will not live through his teenage years which are coming quick!

My kids are so different it is truly amazing.  One is confident, outgoing, enjoys athletics, where the other is so entirely the opposite on every level. Yet they are both super smart, intuitive and down right cool.  It is very interesting watching them  succeed and fail, learn and grow.  This has been an interesting year since I have been around so much, not working because of dialysis.  This year and yes it is almost a year, has shaped our family in the so many different ways.  It's hard to explain, but easy to imagine.

Oh by the way, it's been hot, as hot as it was last July and the July before that and so on, you get the point (LOL)

I love my dog more than life itself!!  "I only like golden retrievers." I really do mean that. Penny makes me laugh and smile at least ten times a day.

Another thought, my husband and I watch "something stupid and funny" every night before bed. It is our policy, we stand by it 100%. You can't go to sleep after 4 episodes of Law&Order SVU! All you here all night is the "chunk, chunk" sound and dream of Elliot Stabler(oh, did I say that out loud!) Trust me watch a Goofy Comedy from the 80's(it's a category on Netflix) and you'll sleep like a baby!

Not to go all depressing on you, but I saw something at dialysis on Friday that I hope no one ever has to see.  Let me start off by saying that there are some very sick and very old people on dialysis. Especially the time of day I go for treatment.  But one of my section mates is not very old but has many other health problems, that make dialysis very difficult.  Dialysis lowers your blood pressure so we are monitored very carefully in that area. But this man in my section, not well, his blood pressure dropped and then he had no pulse. They had a defibrillator ready. they bagged him and gave oxygen. I was 5 feet away. Everyone remained calm, they called 911 and  thankfully he regained consciousness.   It scares me to think that someone could die there. I have seen them rush to other patients who have passed out. It is another odd reality that I endure.

I hope I didn't bore you with my random thoughts.  Please follow me and comment thoughtfully.

Keeping the Faith

I have always been the type of person that believed that everything happens for a reason. I do stand by that. A lot of people do not get behind that, but I do.  You can probably now ask yourself, what reason can we give for disasters, sickness, pain, heartache and on and on. I can't answer that question but what I can say is that for every situation, good or bad that we are faced with, we come away with some lesson learned or some realization of what we could have done differently to effect the story.  So again, I wonder what reason is it that I should have kidney disease and CML and have to be on dialysis and need a life saving surgery.  Well, honestly I don't know that yet, but I do know that is my faith in goodness and my faith in my family, friends, my G-d and myself that keeps me going each and every day.

Keeping the faith isn't just a catchy song lyric, it's a test and a trial each day. When I get up in the morning and I realize I have to go to dialysis again, I say this sucks, why should I do this shit, but I dig a little deeper and a pray very hard to have the strength to get me through this day.  And when I am tired and aggravated sitting in the chair watching the clock and the machines and the blood pressure monitor I grab onto my faith a little harder and watch another episode of Mad Men on Netflix.  (On a side note, I don't know how people ever survived any kind of long term medical treatment without a  tablet with Netflix and Amazon Prime , just sayin!)  It is faith that keeps me sitting in that chair and it is faith that I will be better one day and faith that I am strong enough to deal with this.

As I mentioned before I believe things happen for a reason, well here is an example of this: And I will tell you, this JUST HAPPENED YESTERDAY!!! Here goes:

My favorite Aunt and Uncle and Cousins rented a vacation home out in the Hamptons and invited the rest of the family for a BBQ. We had a great afternoon, schmoozing, eating, drinking, relaxing, kids in the pool.  Later on in the day 3 women stopped by, one of which was a colleague of my uncle's.  They joined us for a drink and we were all chatting. One of the women was talking to my brother and mentioned something in a fleeting conversation about someone needing a Kidney. Well naturally I had to get in this conversation, I said, "I need a kidney, I am dialysis". She said her father recently had a transplant at the same hospital that I am going to have my eventual transplant at. OK no big deal, right? Well, she continued to tell me that she works at the transplant hospital in the POST transplant department, so that after my surgery and discharge I return to the hospital quite often and I am followed for 3 years by this team. She is one of the doctors that I am to see.  In addition, my transplant coordinator is her boss.  THIS MEETING WAS NOT A COINCIDENCE!. I believe that we were supposed to meet. I am still reeling from this "chance" encounter.  Honestly, what are the odds that this random person, who has no connection to anyone but a colleague of my uncles' and came along for the ride meets me, someone who will now be connected to her for at least 3 years.   It's hard to comprehend .  

Is it my faith and strength that brought this to light? I am not sure, but what I do know is that I will continue to keep my faith and belief that I will be ok, because it is working so far.

Give me a definition for "Normal"

It's been several weeks since my last posting, I have to admit each time I sat down to write something the screen remained blank. I couldn't think of a thing to say that didn't feel contrived. I want this blog to be real and honest, not a way for me to throw a random dialysis joke your way.  And to be truthful things have been "normal" for the past for weeks.   Oh "normal" you say, what the heck is that. I am certainly living anything but a "normal" life. Well actually I am. Let me elaborate...

There is no such thing as "normal" I hate to break it you. Normal is  a 5 letter word that we give way too much credit to.  Everyday is "normal" if you rise up in the morning and lie down at night. That's where it begins and ends. We all have a different opinion or understanding for what is "normal". So how can something so different be the same for everyone?

For me this is "normal": 3 days a week for 4 hours I go to dialysis and now that my fistula is doing the job for which it was intended, I get 2 large needles in my arm for treatment. On my 2 off days, I walk, or do yoga,  take care of my family, talk on the phone, shop, cook, clean, go on Facebook. Oh am I boring you, yes me too. (insert yawn) at this point it is pretty boring. I guess you can even say it's "normal".
Why are we so concerned with what is "normal" there really is no such thing. I guess we can say mundane, routine, predictable but that sounds kind of lame right? So we focus on what "normal" SHOULD be. What SHOULD it be?  Well, frankly, mundane, routine and predictable. For now "normal" is good.  Nothing out of the ordinary or scary or challenging or overwhelming is in my way.  It's true you can adjust to anything and for now I'll take it.

Simple Gifts

So you know those yoga pants I was telling you about a few weeks ago, well you will be happy to know that they have finally made it to the place for which they were designed. Yes, I started taking Kripalu (gentle) yoga last week. Having the catheter removed freed me physically and emotionally in a way that I wasn't prepared for.  All these months of being physically tethered was exhausting in so many ways.  Not having to be subject to the pure exhaustion and drainedness (is that even a word?) is quite a revelation. I feel like me again. I can go and do and not feel weighted down. Starting yoga was gift I had to give myself.

I know I am a long way to the end of this. I have no donor, therefore no kidney to fix this mess I am in. Eventually it will come, but for now this is what I have to face. Each day that my faithful golden retriever wakes me at 5:30 like clockwork, is a day I get to give myself another simple gift. It doesn't have to be anything tangible, but the gift of breathing each day and putting one foot in front of the other or the gift of making my kids breakfast or calling a friend is a gift I get to cherish.

Dialysis days are difficult, sometimes painful, always long and often tiring, but that dialysis machine is a gift in its on way. It saves my life on regular basis, it does for something that my own body is unable to do. It makes me angry sometimes that I have to do this, and when I am going through it, I don't see the gift it provides. It is only when I step away from it when I take my drive home and walk in the door  that I see what an important gift it is.

Everybody has shit that that they have to deal with. We all struggle with something. No one is immune, but when you add a chronic illness to the mix, all the little things pile up and it gets harder to separate the good from the bad. I have learned that those little things that pile up are the gifts and we just need to sift through the pile and realize it. That pile of baseball games, dance recitals, practices, carpools, dinners to be made, laundry to be folded. Yes it can get overwhelming and sometimes we are drowning  in those little things, but just think of all the gifts you have in your life and then it won't seem so bad.

The Waiting is the Hardest Part

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.