Im Sorry for the Delay

Allow me to start off by both thanking every one of you as well as saying sorry. I have intended on doing this post for around 2-3 months since the surgery was over, and I kept for getting or got distracted. I love every one of you and truly appreciate all the messages, cards and emails sent to me, Lauren, and my family checking on me and my mom. It was great to hear from all of you.


The day before thanksgiving at around 3pm marked the 3 month anniversary of the kidney successfully being transplanted. If you haven't already heard them, ask Vivian what some of my first words were when I came to, as well as stories over the next week or so. If you aren't sure who that is, ask!  During those days I spent a lot of time sleeping and craving the one thing I couldn't have, a cheese burger.


Many of you already know how the last 3 months have gone but for those of you who haven't, I will be letting the blogesphere know. However I wanted to dedicate this post to the people who haven't stopped supporting me and those closest to this process. If it wasn't for all of you, this would have been much harder to deal with. We are all extremely grateful and cant thank you enough. 


Check back for the story of the time just after the transplant as well as an update for where I am now!

Day Before

I wasn't quite sure how the day before my surgery was going to go. Although I have been on dialysis for almost a year, and have had more blood work in the last month than many do in a life time, it still didn't feel like i was just about to go through a transplant. I wasn't sure if all the emotion would come to the surface and boil over. I wasn't sure if I was start to get worried. The one thing I did know is that if I was still awake at this point (11:45pm) that I was going to be hungry.

My mom had to stop eating at 5 and I thought it would be a jerk move to eat in front of her so i also stopped eating at 5. As i have mentioned in other posts, i am a closet fat kid, so even though I ate a lot before that point, I am still very hungry. As far as the other things I thought might happen; emotions were a huge part of the day, but only is the best way possible.

Starting at a very early hour this morning, I have been blessed with getting many messages wishing me good luck and other kind words towards both me and my mom. As many of you know, Lauren and I are into surprising each other by doing different things behind each others backs, good things of course.  As it came time for me to stop eating and start fasting for tomorrow, Lauren walks out with a bag.  In that bag are 3, yes 3 scrap books with pictures and messages and quotes and jokes and even a haiku, from family and friends both near and far. HOLY WATERWORKS.  I thought I was humbled but the turn out and support at the fundraiser last year, this blew it out of the water. I seriously think I went through half a box of tissues.

Throughout the day, I was trying to think of what I was going to write about in my last post before the big day. Part of me thought I would reflect of the past three years since I have been told that I needed a transplant. That's in the past and I have touched on that before. Part of me thought that I would talk about food and how excited I was going to be to have many if not all the dietary restrictions lifted. Then i realized that if I was still awake at this point there is not way I am going to want to be thinking about food. As the day progressed, and the inbox on both my phone and email got more filled, I realized that I needed to touch on a topic I hit on in one of my first posts.

I consider myself to by one of the LUCKiest people on the earth. Friends and family both new and old have put every ounce of their love and support into me over the last 2-3 years leading up to this point, yet managed to save enough to completely blow me out of the water the days just before. As mentioned earlier, today was a very humbling day for me to see people, both near and far, take time to wish me the best of luck and for a speedy recovery. As I sit here now trying to think of what to write, its hard because I am just so floored by all of you. Thank you doesn't even  come close to giving you the recognition you all deserve. I very much look forward to spending time with all of you after and seeing the great times we are going to have.

I am going to end this post with how I have been ending the calls today. It kind of started as a joke with a buddy but makes sense when you look at it.  Tomorrow is the the end of Ryan 1.0 and the start of Ryan 2.0 (Thank you for that one Tim). It is the end of a life of not being 100% and the start of a life with endless possibilities.  So to all of you I say;

See you on the other side !

My Lucky Number

Everyone has one.  Whether it is the day of your birthday, your favorite athletes number, a combination of numbers or your number from sports.  Everyone's number holds a special meaning to them.  Mine is one that I'm sure I share with many other people.  It wasn't until I was texting with Lauren while on dialysis today that I realized the significance of my lucky number and how it plays into the next month or so of my life.

Since we have now entered another month since I was given the date for my surgery, the number of days until the big day has gotten smaller and smaller. Maybe it was a mistake to start the countdown because it might make the time drag on, but Im fine with it either way.  Just like the oddities of the number itself, today is special in its own way.  Today is the only day in which the date of the surgery and the number of days until the surgery are the same. As of this morning there are 23 days until I have surgery on the 23rd of August.

I'm sure many of you reading this have one idea that comes to mind when that number is mentioned. One of my fondest memories is getting home from church on a Sunday during the winter and watching the NBC double or triple header of NBA games, all the while stuffing my face and sneaking in a nap.  More often than not the Chicago Bulls lead by MJ would fill the spot for one of those games.  For as long as I can remember my favorite and lucky number has been 23.  I even wore the number for 4 years of hoop in high school.

With the number of days until surgery getting smaller, the number of dialysis treatments I have left gets smaller too.  During my session today, one of the nurses told me that today will be the last time that I will see her before my surgery.  When I told this to Lauren, she pointed out that means that the big day is getting ever closer.  I don't think she (Lauren) realized at the time the idea that she had planted in my head for my next post.  I also don't think I realized until today that I am having surgery on my lucky number day.  As I have mentioned in other posts, I believe heavily in fate, and that everything happens for a reason.  Holding on to these beliefs has helped me get through the last 3 years of waiting for this day to happen.

The month of July wizzed bye so where is hoping the month of August does the same.

Fun Number 23 Facts

- 23 is one of the most commonly cited prime numbers - a number that can only be divided by itself and one. Twenty three is the lowest prime that consists of consecutive digits. Primes have been described as the "atoms" of mathematics - the building blocks of the world of numbers. An American businessman has put up a US$1m (£500,000) prize for the first mathematician to find a pattern in primes - a problem known as the Riemann hypothesis.

- More freaky numerical coincidences: Charles Darwin's Origin of Species was published in 1859 - 1+8+5+9 = 23. Two divided by three makes 0.666 recurring (allegedly - actually it makes 0.6666666667). The Hiroshima bomb was dropped at 8.15am - 8+15= 23.

- The first morse code transmission - "What hath God wrought?" - was from the Bible passage Numbers 23:23. In telegraphers code 23 means "break the line".

- "W" is the 23rd letter of the Latin alphabet. It has two points down and three points up.

- The average human physical biorhythm is 23 days.

Love it when a plan come together

I knew from pretty early on that Lauren was the one that I wanted to spend the rest of my life with.  The way she stepped up to the plate at such an early stage to our relationship with all the kidney transplant info I told her about on date 4 speaks volume to the kind of person she is. It shows how awesome she is at giving support when support is needed and how she handles a tough situation. Every time it came up between us I told her that I had a plan.  At times I thought she believed me and others I'm not so sure.  I did have a plan and 2 weeks ago I put that plan into action.

I didn't want to do something as simple as just asking nor did I want to do it at a dinner out and share the moment with a bunch of people we didn't know.  One aspect of my plan was to ask her before my surgery once my surgery got pushed off over a year ago.  Once I figured out how I wanted to do it I enlisted the help of Lauren's running friend Jani to take her on a scavenger hunt to different parts of the city while I prepared things at her apartment. She tells the story better so I will get to the good part. She was gone from about 12-5:20 and come home to a glass of her favorite wine and a dinner that was pretty damn good, if I must say so myself.  On our second date we went to dinner in the north end and then went and got canolis. So while she was out and about I went to mikes and got us 2 canolis and took one of them out and substituted it with a little black box. After dinner and after a very nice talk with Lauren about her day and us, I told her it was time for desert. While down on one knee and the Mikes box open I asked her to MARRY ME. She said YESS, well she said something else first but this is a family friendly blog!!!!!  Working with her sister Lisa we planned a surprise celebration at a bar around the corner from her apartment with family and a few close friends. Lisa got us there when Lauren called her by making it seem like she was randomly close to her sisters apartment. Now for those of you that know Lauren, you know that she has a crazy intuition that usually has her pick up on things or guess things right away and before she is meant to. The fact that I was able to plan all this behind her for the last 2-3 months and have her not pick up on something is incredible. 

Part of my plan was to time it close to when I would hear about my surgery date. A month or two ago I was told that the new study that I am a part of should be ready to go by the end of June so I chose to ask her on June 25th. Up to that point I had not heard anything from Boston, but with so much planning behind it I couldn't change the day without a lot of hassle so I decided to move forward with it not hearing anything. She was shocked and said it was was hard to focus at work on Monday and Tuesday because she still couldn't believe it happened. Then Wednesday rolled around. With about an hour left on my dialysis treatment the phone rang. It was Lorela, who is my new transplant coordinator, saying that she has spoken to Dr Rubin and they are looking to put me on the transplant schedule for August. That got my mind going for a couple different reasons. 1, I cant believe that they are actually setting a date. 2, Lisa's wedding is August 20th so I really hope I will be able to go to it. Next thing I know she is saying that we have an opening on August 23rd we would like to fill with your name. It was hard but I had to hold back tears for the rest of the conversation as well as the remaining hour of dialysis. I got off with Lorela and texted Lauren to call me and when she did I told her the good news which I'm sure she just wanted to scream but couldn't since she was at work but texted me after we got off  " omgggg I am freaking out! SO EXCITED like I cant focus even more now". I started to feel like I was going to get her fired because she couldn't focus all week.

So to make sure I heard correctly I called the number back and talked to Lorela and she said as long as the study has everything in place they need she doesn't see why that day wouldn't work. So I emailed Marian and told her what I was told and asked what she thought. She told me that the night before the study that she was working on and I was waiting for was given the go ahead to officially sign people up. After going back and forth on a couple emails she asked if I would be able to come in next week(this week) to meet with Dr. Markman who is the Doctor leading this study. Apparently Marian had some email issues because she sent an email with a day to come in but I never got it.  While driving home from dialysis yesterday my phone rang and when I looked at the phone I didn't know who's name I was going to see but hers was not what I expected.  She asked if I saw her email, and when I said I didn't she said that she had reserved an appointment with Dr Markman for that day, Wednesday, if it worked for me.  "Of course it does" I said. I had Lauren call me and told her that they wanted me in there today and i would like her to come with me so I asked her to take a late lunch. I then called my parents to see if they wanted to come in case they had any questions for them. After going over the important points of the consent for I officially became the first person to sign up for this new study out of the 5 locations enrolling patients.

All that stands between me and surgery is some lab work for both me and my mom, and a few appointments with a couple people to make sure to make sure I have all the shots I need. I said when I got the call last week that it wont feel real until they start planning appointments and even after yesterday and now that it is official it still doesn't seem real.  I have been on hold for almost 2 and a half years and on dialysis for almost a year, and it still seems like a long time away. With the way time goes these days august 23rd will be here before we know it.

If you have seen Lauren or myself in the last two weeks, we have had a constant smile from ear to ear. My plan worked and I couldn't be happier about that. The next post I do will go into greater detail of what the study is all about. It is much less evasive compared to the other one that I was going to do. As I have said before, the support I get from all of you is what has made waiting to get to this point so easy. I cannot wait to wake up from surgery to my fiancee standing there with a huge smile on her face.  When I was trying to write this I struggled to find the words to describe how I feel because there truly aren't words to describe how I have felt over the last two weeks. 

one step closer

Hello all, I'm sorry I haven't been good at keeping the updates flowing.  I will get better at it, starting today with an update as to where I stand with this new study.  I was told by Marian (research nurse) about a month ago that they aren't technically allowed to officially add people to the study until the site is set up to the specifications detailed in the study.  I have been waking up every morning hoping I get a call during that day saying that they will be ready on this date and are looking to get me in there on this date.  So far nothing, by phone.  Today I got an email from Marian saying they have a meeting with the pathology lab next week (on Wednesday) and will be probably ready to go soon after and will start setting up appointments for me then.  Definitely a good surprise to get that message today with all that has been going on lately with my dialysis buddies.

The past week, and few months has been a tough mental time to be in a dialysis center.  As you might imagine, I am not your typical dialysis patient.  I am much younger and overall in much better health (kinda funny to say while in kidney failure).  By that I mean all that I have "wrong" with me right now is the kidney issues, nothing else.  Many of the fellow patients are battling different cancers, diabetes, and countless other issues.  In the last 3-4 months of the almost 9 months that I have been on dialysis, at least 5 people have passed away.  I didn't really know some of them, but it was still people that I saw 3 days a week and the way we found out was having their chair go empty when they were supposed to be getting treated.  Then this week, two of the guys that I have become pretty good friends with both went under the knife, sadly not for the surgery we are all waiting for. Both surgeries went very well and they will be back in their chairs soon.

Getting back.  When I saw Marians name appear in my inbox, I got nervous first instead of excited.  None of this still seems real.  Even though I am on dialysis and go three days a week it still doesn't feel like I will be going in for a transplant soon.  Maybe its because of how much better I feel now compared to this point last year .Or maybe its because i have been waiting for 3 years and have been told at least 6 times that we might be going forward soon to only find out there is another hold up.  Although this time feels and is different.  As the first person done at MGH, there will be no complications with other patients that holds me up.  I don't think my nervousness has anything to do with the actual surgery itself as this new study is much less invasive then the other one I was waiting for.  Nor am I afraid of the surgery because of the confidence I have in the people doing it and overseeing it.

I will end this post asking to you keep your fingers crossed that they get everything in place middle of next week so they can start scheduling appointments to get me in there as soon as possible.  I had one rule for this surgery once i was told a month or so ago that it was officially a go. Laurens sister Lisa is getting married this August so it had to happen long enough before that day that I felt well enough to go and have a good time, or it would happen after.  Thank you all for all the support you show to both me and Lauren and my family.  

The moment ive...we've been waiting for !

As I pull out of the parking lot at work yesterday I sent Lauren a message to call me when she got out.  Within seconds my phone was ringing and a smile came accross my face.  I look down to see not Lauren's name poping up, but Marians. (the new research nurse im now dealing with on the new study)  My heart sank.  I didnt know what to expect or what news she was calling to tell me.  I pick up with my heart rate also picking up. "hey Marian, hows it going?"

I started the conversation by warning her that the road I was driving on was notorious for having dead spots and if the call dropped that I would call her back.  What happened next is a little fuzzy.  The way I have been telling it is that I blacked out.  Not actually, just was so over come with emotion and thoughts i kinda forget everything that she said.  If you havent figured it out already, it was good news.

The new study that I am qualifying for has officially been cleared to start.  Like I said, what was said after that is a blur.  Not going to lie, got a little teary and started goign through my head what the next few months of my life might be like.  If I thanked her once i must have thanked her 10 times.  The call lasted for about 4 minutes, andIi drove that whole road without dropping the call once.  I'm looking at it as a sign that its meant to be that I got that call. 

Ok, so what's next you're probably wondering.  This study is being done at multiple locations, so to keep everything the same they have an outside company setting all the sites up the same. They plan on having this company into MGH in may or june and will be getting me in as soon as possible after that.  They plan on getting me in to meet the surgeon before that so we all start to get comfortable with eachother. 

Lauren asked me in the middle of the day if I had heard from Boston at all as they mentioned a week or two ago that they were going to be sending me some information.  This is not the first time that she has had a feeling about something that ended up happening.  Its good to know I am going into some of the most important months of my life with a good luck charm. 

By the time I was done talking to Marian, I had enough time to let out a very loud WOOOOOOOOOOO. Then the phone was ringing again, it was lauren.  I asked if she was sitting down and dropped the news.  I could tell she didnt know quite what to say at first, much like me the news took her by complete surprise.  We talked for about 10 minutes or so as I told her the news and what Marian had to say.  I was still at a loss for words and we were just so excited.  Even now, a day later I dont know what to say.  I have been waiting for almost 3 years for the phone call that says we are ready to do you just need to set everything up. 

I will inform all of you more on the details of this new study once I understand it better myself.  They sent me the consent forms yesterday and I am working my way through it to see what I have gotten myself into.  Excitement doesn't seem like the right word to describe my last two days.  I will keep all of you included on all the updates.  Thank you for all of the support and good thoughts that have gotten me to this point.  I'll need them to get through the rest so keep them coming.

blindsided

I'm not quite sure where to start with this one folks.  My plan was to use my next post to into greater detail on the study i keep referring to.  Explain how it was different from a traditional transplant, why I chose to go with this option instead of the traditional route, and what an unbelievable opportunity I have been given.  After today that would be a waste of time.  The phone call I never wanted to come came at around 1:40 today.

 

“Hey Kerry. Hey Ryan, do you have a few minutes to talk? i have an update.” Again, silly me for getting my hopes up. “its not the news we were hoping for.  The committee looking into the study has decided to close it and not move forward with doing any more patients.”  Seriously?? 2 years or putting my life on hold and 5 months of dialysis to get that news on what has been one of my best feeling weeks in a long time.  I think that Kerry felt worse than I did at first.  If she said sorry once she said it 10 times.  She is only the messenger so I couldn’t get mad at her.  One thing that she said that made me feel a little better was that everyone involved with the study at MGH was quite upset by this decision.  Obviously no one wants to be told their idea or way of doing something was a failure, but also because they had a while list of candidates that were lined up to be in the next round of patients done. 

 

My first, and obvious question was why?  She said they deemed the fact that all the patients done had a spike in their creatnin (a level that measures kidney function) which in all the cases went back down with no serious side affects.  To my understanding out of the 10 patients done in my grouping, 8 were a complete success, 1 had to go the traditional route, and 1 had a rejection episode but his levels have gone back down (so we will count that as only .5 as far as I am concerned).  Traditional transplants have a success rate (success is marked by the patient keeping the kidney and not going into failure again) in the upper 90% range, and if my math is correct, the study had a success rate in the 80-85% range.  yes that is lower than the traditional but I wouldn’t say it warrants shutting it down.  i thought that were going to have to make changes to the way they did things to try to avoid that spike form happening.  Needless to say, I was a little shocked and upset at the same time.  After with talking with Kerry about where to go from here, the call was over and I now had the daunting task of calling those closest to me to break the news.  Before I did that, I put the phone by my side and let out a loud FUUUUUUUDGE, Only I didn't say Fudge. I said THE word, the big one, the queen-mother of dirty words, the F-dash-dash-dash word, then I started my calls.  As one one expect, I was answered with disbelief, frustration and questions. Questions of what’s next, what do you do now?

 

Hope is not lost to live drug free after the transplant (that was the big selling point of the study approach to not be on anti rejection drugs the rest of my life).  A couple weeks ago I got a call from a Marian who does the same job as Kerry just with a different research group.  She called because she plan to roll out a study protocol soon that would have the same outcome (drug free) but a different approach to get there than the other study.  Everything on hers isn’t approved net so I am not sure of all the details of it, but I will update you all as soon as I know more.  I am hoping that when they do get the green light that I will be able to cash in my 2 years of waiting to be placed at the top of the list.

 

There has only been 2 instances since i started looking at this hole process with positive eyes and chose to go the study route that I have struggled to stay positive.  The first one was when I was told that i had to start dialysis and got admitted to the hospital to do so, and the other was today.  As I mentioned, i have had a great week.  It started with seeing both my sister and Lauren cross the finish line in their races on Sunday, then I came in lighter on Monday to dialysis than I usually do after a weekend. I played  well at bball Tuesday night, had a great time with Lauren last night and it was sunny out while I was talking to Kerry this afternoon.  Then all of a sudden, I got blindsided.  With the help of Lauren (seriously if you haven’t met her yet, call me we will set something up) and my family I have started to find the good in this situation.  Trust me, this has been the hardest situation to look at with positive eyes but that appears to be something I have been blessed with the ability to do and has become one of the foundations of this process for me.  I would be remiss if I didn’t thank all of you for your continued support, so thank you.

 

I will end this post with a couple of quotes that have helped me today and on days that I feel down.  They are both ones I haven’t talked about before and both come from my grandmother who taught me and all my other cousins quite a bit.  the first one is everything happens for a reason, so there is a reason that the study i have been waiting for got shut down.  The other one is god only selects those strong enough to handle adversity to deal with it.  Two great quotes and words that really calm you down and help to look at a situation objectively when its not an outcome you want.

The Waiting is the Hardest Part

 

When I tried to think of a title for this post with what’s been going on, I couldn’t think of one that fit better than this.  Not only am I a big Petty fan to begin with, but the title of this song would be fitting to anyone.  As I have mentioned before, I have been told a couple of different times that my surgery might be a go only to be told it is going to be a couple more months.  So when I started dialysis and found out this most recent time that the study was on hold I promised myself not to get my hopes up when there was a glimpse that things are a go.  FAIL. 

 

I reached out to the research team last week as they were supposed to hear something back towards the end of January.  After going back and forth with Kerry (Transplant Research Coordinator) over email for a couple days I learned that my study has not been shut down.  Good news.  The bad news is they are going to have to make changes to the way they do things now.  The process to come up with a new method of doing it, submitting it for approval and getting the approval takes a couple months.  Kerry estimated that it could take 6-9 months.  As excited as I was to hear that it was still a go and an option for me, it was tough to hear we are still looking that far out.  Not going to lie, got a little emotional as I got my hopes up that it would happen before the may flowers sprung to life.  Talking to Lauren she reminded me to find the good in the news I was given. 1) the study wasn’t shut down and is still an option for me.2) the changes they make will only be to improve the quality of recovery that I will have. Thank you Lauren for helping me see the positive.

 

Just days before I reached out to Kerry, my Mom, Lauren and I were talking about how we need to stop putting our lives on hold waiting for them to tell us we are ready.  Things like taking vacations which we haven’t done much of thinking we were going to be getting ready for a transplant.  And yes I put myself in this position, and yes I could chose at any moment to go the traditional route, but I’m not at that point of frustration yet.  The study I am in has way to many positive outcomes to it to just throw it away.  But what if I could get the same outcome by taking a different route??  That is one of the things I am going to have to think about as I was contacted by one of Kerry’s coworkers (Marian) about another study they are trying to get off the ground that has the same final outcome(no anti-rejection drugs) but I wouldn’t have to have chemo or radiation before the transplant.  I guess I should get on that post explaining the study I’m currently enrolled in soon.  The team that Marian works with is supposed to be sending me information on their study soon and I plan to set up a meeting with both teams(if possible) so I can better decide what I want to do.  But for now I will continue to wait, listening to Tom who said it so well when he said the waiting is the hardest part.

 

I’ve decided to add a new section to this blog.  At the end of the post I am going to put how I am feeling.  So here we go.

Battled a cold last week and it affected some of my treatments.  I have tried to get to bed a little earlier though I did lose a little sleep lately worrying about snookie getting arrested.  I mean, she’s delicate ya know, she cant handle those harsh conditions. 

You are what you eat !

If that is true, I am a very boring person these days.  Due to the state of my kidney function, my diet is a very difficult one as an active 25 (almost 26.shhhhhhhh) to follow.  It has been changed a couple different times, only getting harder and harder to stick to and follow.  A lot of you might not know this about me but I am a closet fat kid, the only reason it doesn’t show is because I am as tall as I am.  I love food, trying new things and eating as much as I can of the food that I love.  You have heard me reference different parts of my dietary restrictions in other posts, but after spending a few days in Vegas I was given a little reminder of just how hard following a diet can be.

When I was first declared to be in failure, I met with a nutritionist that my transplant team has on their staff.  The first change that came out of that meeting was a lower sodium intake which I got pretty good at finding ways around and still having my food have a decent taste to it.  (Just a little game, start checking the nutrition labels on the food you buy and you will be amazed how much sodium is in there.) Also in that meeting they told me at one point I will have to cut back on other things such as potassium, phosphorous.  Potassium, by the way, is in just about everything good.  Fruits, veggies.  now I know what your thinking, Fruits. Veggies. Good?? that was one of the ways I found to to deal with the low sodium diet was to eat those instead of a bag of chips or some thing saltier.  There are three different levels of potassium that they used to measure how much a person can have; low, moderate and high(or don’t even think about it). Some items that fit into the low category are  apples, grapes, cabbage, green beans.  Some items that fall into the moderate category are blackberries, corn, grapefruit, broccoli, carrots.  Finally, items that fall into the high(don’t even think about it category) are banana, milk, kiwi, spinach, tomatoes.  The problem with too much potassium is it is broken down by the kidneys, but has a much more crucial impact on the heart.  I started having heart palpitations and an irregular heart beat as a result.  The reason it got to that point is with a month, sometimes two between appointments a a lot could change in terms of my function which changed how my body dealt with the food I ingested.

Phosphorous, also has a bad affect on the body when the level gets too high.  Phosphorous and calcium work opposite each other and phosphorous breaks down calcium.  When my kidneys got to the point that they weren’t in taking the calcium I ate, the phosphorous started to break down the calcium in my bones and that is what lead to the hypocalcemic episode that I had that I mentioned previously.  Much like potassium, phosphorous is in many things that are in a daily diet for anyone.  Unlike the potassium however, there is a pill that I can take known as a binder that “binds” to the phosphorous and helps keep the limits down by carrying it out another way.  That pill has to be taken with food to have the best chance to really bind to the phosphorous. 

The area of my diet that has actually increased in the amount that I am allowed to take in is the protein.  One thing dialysis does is lowers my red blood cell count, making me anemic(sp).  It is suggested that on days I have treatments to take in as much protein as possible to help replace what was removed earlier.  Seeing how peanut butter and meat are some of my favorite things, this made me pretty happy.  This is the first time in my life I have been urged to eat a lot of protein.  My whole life I was instructed to have a low protein diet because it taxed the kidneys too much and would make them run out of steam earlier than if I limited the amount I had. 

Without question.  The hardest of my restrictions that I have to follow is the fluid restriction.  I have already touched on this in the earlier posts but since it is technically part of my diet, we will talk about it again.  2 liters is all I am allowed to have per day for fluid consumption.  May sound like a lot, and to some of you it might be.  Not me.  Just days before i started dialysis, I was having 3-5 liters of water before lunch alone.  Another way to look at it is 4 Poland Springs water bottles, 8 8 ounce glasses of something. Also, anything that is left out at room temperature that takes a liquid form counts towards the total. Ice cream, ice chips, soup all have to be considered.  This is one thing that I have been extremely opposed to since I was told.  I actually talked them (nutritionist at dialysis center) into allowing me the 2, they were going to only “allow” 1.5.  The reason I have been opposed to it is most people on dialysis are not 25, not my height, and not nearly as active as i still am, as most of them are older.  Working as much as i can, still playing basketball to try to stay in shape and the just general hustle and bustle of life leaves me thirsty all the time.  It was very difficult to monitor how much i am drinking,  that was until Lauren hooked me up with a 32 ounce Nalgene bottle for Christmas so now i know i am allowed to have two of those a day. 

Now that I am on dialysis, I am allowed to “cheat” a little bit.  The dietitian in the dialysis unit at MGH informed me that if i was to cheat, it should be the day before a treatment as the machine can actually remove a lot of the dirty elements form the blood stream much like the kidneys would usually do.  The only element it wouldn’t be able to handle is the phosphorous.  She obviously didn’t know who she was giving this information to.  The only issue is, the treatment doesn’t go as well, and I don’t feel as good after a treatment if I cheat the night before so I usually don’t.  Sometimes, it is very difficult to have a mean that fits all the criteria the my diet entails.  If you eat out, all that food is prepared for flavor, which usually means a high sodium level, even some salads you can get out have high counts. 

Now that the holiday season is over, I think I did pretty good in terms of monitoring what I should and shouldn’t have.  The people I eat with the most, Lauren and my family have adjusted what they eat to help support me.  Its hard to crave something you shouldn’t have when its not around you.  My last few treatments haven’t gone quite as well as they had been and I’m still blaming the buffets for that.

 

Perspective

The way we look at things plays a huge roll in how we get through them.  This is true for our job, personal struggles and just daily life in general.  In my case, the way I look at a looming kidney transplant and all the events that lead up to it are what make it possible for me to get through it with the positive attitude that I have been able to hold.  If someone uses a saying that I like I tend to steal it. For example, when I worked with my Uncle Tommy on the Cape, he used to always say “it is what it is”. The reason that I liked this saying is that a lot of times there are aspects of our life that we have no control over for one reason or another so getting upset, pissed or down over it doesn’t do any good and just makes things worse. The most recent saying that I have become fond of is “find the good”, which I have picked up from my incredible girlfriend, and is also one of the saying of her step moms company, Zola Goods.  No matter how crappy the situation there is good things that can come out of it so make sure you take a close look. 

 

One might think what is the positives of being 25 and in kidney failure and now tied to a dialysis machine 3 days a week.  They have a good point in asking that question, but its there, trust me.  Lets start from the beginning.  Okay, so maybe saying there are positives to being in kidney failure is a far stretch but there is good that comes out it.  For one, how many people truly know how loved and supported they are?  After the fundraiser that my family threw for me this past summer, i now know, and damn.  The number of people that showed up truly humbled me, and I know I have talked about this before but looking back on that day it still blows my mind.  I was lucky and got a disease that hasn’t really slowed me down in my life.  Anyone who has ever walked through the doors of Boston Children’s Hospital will agree that it is a hard thing to do.  There are so many kids that have such difficult diseases that their daily life is anything but normal and if I was to feel bad for myself and the circumstances that I have to deal with would be an injustice to those free spirited kids because I got off easy.  Another reason that it has its positives is I live just outside Boston.  FYI, the docs here are pretty badass, and I have the utmost confidence in them.

 

Now the positives to dialysis, and dialysis during the holidays are much easier to find,  One,  after feeling like crap for the past few months, and truly not being 100% my whole life, dialysis gives me back energy and i feel incredible.  Along that line, I had energy to do things over the holiday season that i might not have been able to do, most important to me is I got to spend the holidays with Lauren and my family and friends.  Alternative, feeling good and in a hospital room by myself.  Yes I will be able to have visitors but that’s obviously not the same.  Yes i wish i had my transplant when they first told me to get ready almost a year ago so i was just about out of the recovery time, but it wasn’t meant to be.  The reason that the study was placed on hold is two of the participants rejected their new kidneys months after they were supposed to be out of that risk period one having to get a traditional transplant after all.  Obviously not something I want for myself, so by giving them time to figure out what might have caused that to happen will make it so i don’t have to go down that road myself.

 

What prompted this post was the fact that I had to go for a dialysis treatment on both Christmas Eve and New Years Eve and neither one bothered me and how surprised people were by that.  I had to be at my treatments before 6am on both those days so its not like it cut into my celebration plans.  Secondly, Lauren was able to come with me.  Yes we slept most of the time but there is something about having her there with me that just makes the time go by faster.  We were also voted cutest couple in dialysis on Christmas Eve, we were the only couple there but I’m still chalking it up as a victory. (see picture below) Due to the fact that I had treatments on those days, I was able to eat a lot more than I would have been able to due to my dietary restrictions.  Something I have become quite annoyed by.  As I said in the update email I sent out this past week, I hope everyone had a good holiday.  One of my new years resolutions is to get one post in a week, might not be as long and in depth as these have been but there will still be plenty to talk about now that Jersey Shore is well into its season and for some reason is causing a pandemic across the country.