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.

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!!!

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 ;)

Part IV Lean On Me.

For a couple of weeks now I have mentioned the awesomeness of a particular person in my life.   It's time I introduce you to some VIP's. First and foremost is my husband Adam.  He is awesome for many reasons. My well- being has always been paramount in his life, and especially now with all this dialysis and kidney disease nonsense he has made sure that no matter what I need he will take care of it in some way,shape or form.  He is my best friend, my rock, my soul mate, my everything, I could not imagine going through this without him by my side.  He always finds a way to make me laugh and keep me laughing.  We have a long history of communicating with each other through movie quotes.  He  always has one on hand  to lighten the mood.  This ordeal has been very stressful on him. He works incredibly hard and does whatever he can to make sure his family has anything they need.  He puts up with a lot and I often don't give him enough credit.  I could go on but I don't want to bore you, you get the point!

I am extremely to connected to my family and, my family is so incredibly important to me. My parents are amazing loving people, who have gone so far above and beyond lately without question.  I am so blessed and lucky to have them by my side.  I talk to my mom several times a day and always have, my dad is there no matter what. I really feel bad that they have to travel this road when all they want to do is travel.  I love them so much.

Going through dialysis is crazy hard and has so many ups and downs.  The support of friends and family have gotten me through some of my worst days yet. I have amazing girlfriends who I am proud to say are my family too. You CAN NOT walk this path alone, it is dark, unfamiliar and often very bumpy. If you have good people around you, you are safe.  I love being able to call my mother-in-law who although lives some distance away, I can chat and catch up wish. She is a wonderful person who I wish was around more often.  Thank G-d for email!

Truly the people that keep me going are my kids. My boys are so special and I hate that they have to have any part in this. But they're smart, funny, easy going kids and they know "Mom'll be fine".  I couldn't talk about my VIP's and not mention my VID (very important dog), Penny.  She lays with me when I come home from dialysis and all I want to do is rest. She sits at my side when I'm cooking, she follows me into the bathroom or waits for me outside the door.  Dogs know how you feel before you feel it! She is my ally in this crazy house full of boys!  She talks to me too.  YES she really can talk!!!

I know this blog may be not as informative, or as interesting to some, but all I can say is that no matter who you are and what you are going through in your life. You NEED friends and family to support you!  There are times when you think you want to be alone, but in reality, when you think about it you just need someone by your side.

part III, a Disney Adventure

The great thing about family vacations is the anticipation of going. You plan and plan, and wait and finally the time comes for you to pack your bags and head off, away from the daily grind of school, work, life to some alternate universe that we call vacation.  So imagine if you will a trip, 4 years in the making. My parents have a Marriot Time Share in Orlando, so 4 years ago my immediate family  and I made our way to Orlando for an amazing Disney trip. My boys were 8 and 5 and my nephew was about 3. We had a blast, of course we couldn't wait to come back. Well skip ahead 4 years and here we are, planning for February 2013 for a journey back to "The Happiest Place on Earth Inc."

Planning for the trip was the easy part, we knew where we were staying, what we HAD to see, what we wanted to see, we talked about Fast Pass and waiting on line and meals and what to pack and all that good stuff. We are experts just give us the map and we can tackle any Disney Park without a glitch. However, no one tells of the issues you can't prepare for  that would be part of your trip. Nobody 4 years before your pilgrimage to see a mouse, tells you to include one very important thing on your itinerary. DIALYSIS was not on the brochure. It isn't an amenity at the hotel, it isn't an extra excursion or free fast pass on your favorite ride. It was certainly no part of my plan, yet there I was, 5 months before my journey having to include it on my list of MUST DO's while on vacation.  Oh wait didn't I say that vacation was a way of escaping from the everyday mundane tasks of life. Then surely, this would fall  under that category. Sorry, no, wherever you go your kidneys come with you, so guess what dialysis goes too.

The  thing about being a dialysis patient is there are wonderful people at the dialysis center who truly are there to take care of you. I happen to have amazing social workers whose job is to facilitate travel plans for treatment. Several months before I filled out some paperwork and they locate a center near where you are staying and get it all set up for you.  People on  dialysis nowadays have a lot of options. Orlando being one of the top 10 destinations for dialysis patients to go, it was not a difficult process. Las Vegas, San Diego, Nashville all good places to travel to if on dialysis. There are several others too. Believe it or not there are even DIALYSIS CRUISES now!!! How cool is that!! Haven't done it yet, but it could happen!

For those of you who have done a Disney trip or two, know that Disney is work, and it takes a lot of timing, waiting, planning, waiting, walking, trams, monorails, boats, strollers and general stamina to have a good time and not go crazy. The hardest part of the trip was planning on when to get dialysis, I went back and forth for weeks- do I go at 6 am get done at 10 am and then have the whole day in the park? Do I go at 4:00 in the afternoon get done at 8pm, have dinner go to bed? Or in some places (like Orlando) some centers have late night so you can start as late as 9:00 pm.  So which do I choose. My family and I played out every possible scenario. I settled on evening around 7:00. I get VERY tired after dialysis so I felt that going first thing in the morning and going into the parks after would be very challenging.  Going in the late afternoon would present it own challenges as to when to leave and getting the car and all that nonsense. So going at the end of the day at this point only seemed logical.
It really turned out to be the best way to do it for my families purposes. The only bad thing was whoever had to pick me up at 11:00 had to be awake enough to remember to come get me!

I must say that for the most part the process was pretty seamless.  Due to the length of time I was to be away I had to have dialysis 4 times during our trip.  The centers in the Orlando area are used to having people travel in and out.  I showed up at my designated time, got my treatment and went on my merry way.  The part that sucked was that it took me out of my alternate universe called vacation, and gave me a hard smack back to reality, if only for a few hours.  My husband (in all his awesomeness, I told you I'll talk more on him later. I promise I will!) arranged for me to get a scooter to tool around Disney in. We arranged it with a private company for the week. They delivered to our hotel and picked it up at the end of the week. Much cheaper than a daily rental at the parks.  It fit in our SUV (yes, we drove down) and made my life much easier.  It did help us to get on some attractions quicker, but not everything. On the rides where no scooters were allowed they would transfer you to a wheelchair. I DID NOT DO THAT. I stood on line on my own 2 feet because thankfully I still can. But I found having the scooter extremely helpful. HIGHLY RECOMMEND!  So even though I was limited in some respects I tried very hard not to let it slow me down or limit my family in any way.  I think I did a pretty good job.

It wasn't easy traveling while having to do dialysis but I can't say that it was hard either.  If you have doubts about vacationing while having to get treatments, don't.  Just go. Go to that alternate universe for a few days, step away from reality, just know that a few times for a few hours you have to go back there while you are away. At least the rest of the time you are someplace else.

Part II

Getting used to being on dialysis was the easy part, really.  I pack my little tote bag with blanket, pillow, iPhone, iPad, Ear Buds (a must), a snack and off I go like a good little soldier to battle my failing kidneys with a lifesaving machine. Once there I am tethered and essentially stay put for about 4 hours.  No, I can not get up, move around etc. Going to the bathroom is a monumental task, I literally have to come off the machine; there is a process to every area of dialysis, saline, heparin, lines, clamp this, turn off that. Every minute off is that much longer I have to stay there! Now there are many ESRF (end stage renal failure) patients who ( not being gross but....) they stop peeing altogether. Me not the case. I still go, so when I gotta go, I gotta and so begins the on/off dance during dialysis which is annoying and frustrating.  Takes more time, and when I go it's only like 3 drops anyway so what's the point! I am oh so close to buying adult diapers for my time on the machine.  I hear they are making them stylish now, Hey if Lisa Rinna can wear them, why can't I ;).

Now for the hard part, the suckiest part that they don't really tell you about until you are staring down the nose of failing kidneys. YOUR ACCESS.  Every person on dialysis has an access; a means to which treatment is delivered. There is a perm-cath (catheter) which I have proudly donned since the beginning. and there is the fistula which has to be created. It is created by a a vascular surgeon during a surgical procedure in some part of your arm.  Now the fistula is considered the best access but it is an up hill climb to its use. You get it and then you are told that in 12 magical weeks or so you will be able to use it and the fairy godmother of dialysis will smile upon you. Um, bullshit! It takes months for it to "mature" and throughout this maturing time it is constantly being surgically tweaked.  But as soon as you can use it you can get the Catheter out, oh, did I mention that you can't get the catheter wet? Oh, I forgot that lovely point. So I haven't showered since September, well not exactly. I have these wonderful, and expensive "catheter covers" that I tape to the right side of chest and over my shoulder as to not get it wet. Showering used to be relaxing and enjoyable way to start my day, now it stresses me out as my husband has to swath me in these plastic covers. Let me just say, HE IS AWESOME!!! more on him later :)

So dialysis on the catheter is painless, Happy to say, but is not ideal. You don't get as good a treatment as you would with a fistula. My fistula is taking a while to get going. It's been many months of waiting to use it, and as I am just beginning to use it. It is  much more difficult than I would've have thought.  Just so you know, dialysis with a fistula requires needles, 2 large ones. Need I say more. I am not a wimp or anything, I can take it, I watch octogenarians do this 3x a week. Yeah, no, I can't take it.  But what choice do I have? NONE. That is the one thing about being an ESRF patient you don't have choices. The doctors and nurses say JUMP  and you say HOW HIGH. You have no control of any of this. Now I am not a control freak or anything, but I woman who likes options and the right to make choices. Well, my friends I am sorry to say that having a choice is not an option for me.

So I'm on Dialysis, now what.... 7 months ago everything I knew about being a "normal" working mom went quickly out the window. Well actually that isn't true; everything I knew about my life went out the window in July when I was diagnosed with a chronic form of leukemia, by accident because I was already starting to have failing kidneys and blood work on a regular basis finds things IMMEDIATELY.  In July of 2012, I received this diagnosis as quickly as the 6 train goes in and out of the station. The blood work was done, the hematologist dropped the bomb on my husband, mother and I and just as quickly as that train came, the doctor picked up the pieces and told me how treatable it is.  Now for "normal" people this would be just fine, but am I "normal" HELL NO, I already have a garden variety of issues, so this little problem is now a somewhat large problem.  "take this pill for the rest of your life and you will go in remission and be totally fine from this," says Dr. L.  Oh ok, sure whatever you say.  "Come in every week for the next 6 weeks for blood work, the medicine will work, I have a 90 year old that has been on it for 10 years, totally fine!" Oh ok, sure whatever you say.  You know that feeling you get when you ride a roller coaster and the wind rushes in your ears and you momentarily don't hear anything, Yeah, well multiple that by about 1,000,000 and that's what I felt like.

So skip ahead about a month, and I am now at new Kidney specialist, I had been seeing the same doctor for my kidneys for about 12 years but not near my house, so in light of this new diagnosis I had to put all my eggs in one basket.  So off I go to Dr. K and he put me on the proverbial "short Leash" assuring my time with my own kidneys was short lived and that Dialysis and Transplant were iminnent.   Again, the train came, ran me over, backed over me and pulled out the station.  So my short leash was so short that by the beginning of September I was at the vascular surgeon having a semi-permanent catheter placed to start this life saving, amazing process called dialysis.  

Now people, let me say this, dialysis has been around for a long effing time, how people survived and how they came up with this magical process is quite unfathomable.  Let's just say that I have learned way more than I have ever imagined and I am perfectly happy to educate you all. At first I figured once or twice a week for a couple of hours, no problem, I can handle it, UM NO, try 3 times per week for up to 4 hours, and for some people more than that.  And no, I can't have visitors (RULE #1). So I am relegated to my dialysis chair on Monday-Wednesdays-Friday from 10:30-2:30, call me, message me, or hang with me on Facebook. So my new "job" as my husband likes to call it, is DIALYSIS. Now you might think that I go to dialysis and then come home and everything is honky dory, sorry, not the case, I am, tried, irritable, hungry and basically have no energy until about 4 hours later. Yet I am still responsible for my children, my dog, my husband, laundry, making dinner, driving carpools and playdates. 

So to say that this was an adjustment is understatement.  Please continue to follow me as I traverse this unique life I call "dialysis, now what" I know there are millions like me out there and I hope to provide some insight and sometimes humor into this situation.