Less than 12

Twas the night before surgery, my second transplant.
I have a few things to say, but I'll try not to rant.
After month of hoping and sitting around,
I'm changing out of these clothes and into a gown.
It's a 6am check in Wang building 3rd floor
Better eat while I can, come Monday i have to stop at 4.
Already had my preop and anesthesia phone screen fit my in,
This time i hope i dont call Lauren Vivian.
Dialysis is over, no more treatments morning noon or night,
Now after all the waiting the end is in sight.
With support coming from both near and far,
Putting this one on the left side, gonna add another scar.
Cannot thank you all enough from the bottom of my heart,
Getting back to life, work and showers I cannot wait to start.
Come visit call or write, I'd love it all,
As Miley once said, I'm coming through this like a wrecking ball.


Very humbled today with all the post, calls and texts. I really do have the best family and friends in my village. I have been dealing with this for as long as I can remember, and I have no doubt that my team in Boston will knock this one out of the park. However, it is pretty great to know so much positive energy and prayers will be floating around. Cannot wait to see what to see what Ryan 4.0 will look like.

Thank you to Lauren for a delicious send off lunch. Perfect "last meal" before the big day.

Long Overdue

I had all the best intentions of being really good about posting here and keeping all of you up to speed with what is happening with me, as well as maybe offering a little entertainment. That didn’t happen. A lot has happened since the last time I posted, some great, some not so awesome. But there is some great stuff to look forward to as fall rolls in.

I cannot proceed without addressing something that truly left me speechless. Back in May (yes, I know that was months ago), there was a fundraiser thrown on my behalf. I didn’t have much involvement with any of the planning, gathering items, or setting up. I just attended. I showed up 20 minutes after it started, and as soon as I turned into the parking lot, I was already speechless.Though I didn’t get a chance to speak to many of you, nor get to walk around to see some of the incredible items that were donated, it was an amazing night. It was great to see so many of you come out on a rainy night into the city and support me and my family. I thank all of you from the bottom of my heart, and I hope you know how much I love all of you.

As discussed in the last post, it was determined that the fistula in my arm, which was used for dialysis in 2011 as well as this time around, was putting too much strain on my heart and creating what they titled high-output congestive heart failure. The name is scarier sounding than it is, as it would take a while for it to cause any permanent damage to my heart. Just kinda makes you stop in your tracks when you hear the words. They discussed taking the fistula out when I was in the hospital just before Easter when I started dialysis, but decided to see if some of the extra fluid around my heart was because of the lack of kidney function and hoped that more dialysis would help.

Alas, after a follow up with the cardiovascular team, they determined that there was still too much fluid, despite being on dialysis, and they decided to take the fistula out. They put in a central line tunneled catheter to do the job the fistula had been doing. As excited as I was to have the fistula out, there were a number of funky side affects (numb hands, hearing my heartbeat when I turned my head, having to wear a special sleeve at work to keep it safe), I was not in the slightest bit pleased with the catheter being the only back-up option. I had only heard of two experiences with these types of catheters, and neither went very smooth. To say it scared the shit out of me would have been an understatement. But that was my only option. I was called up on a Wednesday and told when the procedures were taking place and when to show up. So I did.

There are a few restrictions that I didn’t know about until just before the procedures. The first and the one that stunk the most was the lifting restriction. After having the fistula removed, I couldn’t lift more than 5 pounds for a month. At the time, Madison weighed 2 times that. The other restriction that was a pain was I could not swim or take a shower until the catheter came out. Let me tell you, even if you enjoy a nice bubble bath from time to time, maybe with lavender scent, some candles burning, and some calming music in the background, it gets old when it’s the only thing you can do. Thankfully, we had recently introduced some bath time toys in the tub for Madison that I was able to take advantage of.

It was these two procedures, along with the limitations that came with them that landed me taking a layoff. Having something sticking out of my chest that connected right to my heart was not something to drag from jobsite to jobsite.

To say it has been a long summer is an understatement. Between dealing with the hottest August on record without being able to swim, as well as not having work to keep myself occupied, it made for a very long month. I am pretty pleased to see the fall season, and more importantly the cooler weather rolling in. It brings about so many amazing events, holidays, as well as foods.

I would rather have the weather we had this past weekend for the entire year, with a little sun mixed in, but the temps were perfect. I saw a commercial for a Guinness beef stew the other day and it literally made my mouth start to water. Not really a dish you make when its 96 out, with a real feel of 104.

One holiday that is near and dear to my heart that not too many people celebrate or even know about for that matter (which is really too bad) is coming up. It’s a day to celebrate something that as kids we would read and make our parents bring us to the store to get. They are more of a collector’s item to us as adults, but we all clamor to the theaters to see the newest spin on them. Let’s be serious, everyone has either read one, talked about one, or seen a movie based on one. They hold a bigger part in our lives than we realize, and yet many don’t even know there is a day celebrating them. I mean I don’t know how National Comic Book Day is forgotten; it is slammed right in the middle of Cherries Jubilee Day and Johnny Appleseed Day. If you don’t have those days circled on your calendar, I don’t know about you.

Oh, what day is it on? It is on September 25^th, and I can tell you that your local Jeffrey Albertson (comic book guy form the Simpsons) would be thrilled to see you on that day.

Alright, I never even knew that this day existed until I was looking things up to write this post. All that information is accurate though. However, this year it holds a much bigger meaning than just a day to read through your collection of X-men or Spiderman comics. This year, it is the day that we start to put this most recent saga with the kidneys behind us. I have my transplant scheduled for that day. It hasn’t sunk in yet, and I'm not sure if that’s a good thing or bad. I am not nervous at all, as I have the most amazing doctors and nursing group anyone could ever want when going through something like this. I have the amazing support from all of you here and those not on social media. It’s an awesome feeling.

With my pre-op appointment tomorrow, 9/11, I am thinking that it will start to set in a little more. I had grand plans to make an advent-like calendar to count down the days until my final dialysis treatment, but I have no idea where the time went. The magic number was 22 treatments when I found out the transplant date. I am down to 6 after today's session, and the treatments seem to be going faster and faster as the number I have left keeps going down.

I know all of you must be wondering why it took so long for me to share this great news, I know. Lauren has been on me for a few weeks to get something posted to share the excitement. It’s not that I didn’t want all of you to know, it was not that I really don’t know where the time went. I mean, I don’t know what happened, but I blinked and now I have a 9.5 month old who is changing more and more each day. Madi’s full of spunk, eating every meal that we eat, and zipping around the house like speedy Gonzales, if he was limited to army crawls and scooting.

Many people ask what kind of recovery a surgery like this carries with it. The surgery is on a Tuesday. I have to arrive at MGH at 6am that day and will likely start the trip down to the OR a little after 8 or 9 if I remember correctly from last time. After the surgery is over, I will be brought to Blake 6 at MGH where some of the most amazing people ever will care for me for 4-5 days. I will likely be discharged and heading home before Fortune Cookie day (http://www.holidayinsights.com/moreholidays/).

After I get home, I will have weekly trips into MGH for labs and to make sure things are working correctly and healing correctly. That will go on for about a month, with a few procedures sprinkled in there to settle everything out and to remove the catheter, thank God!

Last time I went through all of this, I opted to be a part of a study that aimed to wean the number of anti-rejection meds that I was going to need to be on, which required much more time in and out of MGH for blood tests and biopsies. I was only part of that trial for 2 weeks before it was deemed that I was having a rejection episode. I was removed from the study and converted to a traditional post-transplant treatment plan. This time around, I have opted to take a regular approach. Before the first one, I was taking a few pills a day, but nothing compared to what you take post surgery. Now that I have been doing it for 7 years, it won’t be such a lifestyle shift to get used to.

Although there are some studies going on, some that I considered getting involved in, I thought it best to not risk anything this time. Though my involvement in the study the last time is not the cause of why the kidney started to reject, I would like to give this next one its best chance. Last thing I want is to be here in another 7-10 years and going through all this again.

Please don’t hesitate to reach out if you have any questions or would just like to catch up. I look forward to so many great times to come, healthy, with all of you.

Again, your support back in May, as well as before and since then has been amazing. I came up with the name for this blog on a whim back in 2010 and I don’t think I could have picked a better name. Granted, due to my height, I'm not sure I will be able to obtain my leprechaun card, but I am one lucky guy that is for sure.

THANK YOU

I sit here on a Wednesday afternoon looking out the window waiting for the start of another nor’easter, the fourth this month. It’s exactly one month since my post announcing to you all that I have to have another transplant. Where is this year going? How are we already almost to the end of March and into April?

So, why am I home? Done with work already? Not quite. As mentioned before, I have been battling some blood pressure issues since before Christmas, which landed me in the hospital for Christmas. Although my pressure has gone down some, using a regimen of 5 blood pressure meds spread throughout the day, I noticed recently that I had developed bumps in the left side of my chest—the same side as my dialysis fistula. The bumps are not very large, however they appeared to be blood vessel related as opposed to fatty tissue or calcium deposits. I had also noticed an increase in cramping in my left arm from the shoulder down, especially in my hand. So much so, that I started to feel like Jim Carey from Liar Liar.

After discussing my concerns and discomfort with my doctor at MassGeneral, they thought that the fistula may have increased in size too much and actually taking blood away from the heart thus making the heart work too hard. was brought up. This would lead to all the above mentioned problems.

One thought was that maybe there was a narrowing in the artery. The test to determine if this was the case is called a fistula gram. In that, they put a port in the artery in my arm and send a cardiac catheter in, and any narrowing that is found is enlarged with a balloon. They somewhat sedate you for this procedure, which for me usually means I will wake up a few times during it, but they also have the area numbed so you don’t feel anything. They have a large screen to watch what the catheter is doing in real time on a monitor. One of the times I woke up, I was able to watch them work the catheter all the way to my heart. Again, there is no pain associated with that but it was pretty trippy to watch. There was one minor narrowing found and corrected, but further action was still needed.

They still felt that the fistula was too big, so they decided to band it to make it smaller. In that procedure, they had to measure cardiac output before, during, and after the banding was complete. They did this by putting a port in my neck and inserting a catheter down to my heart, so they could work on my arm. As I have always done when I have surgery or any procedure, , I passed my phone to one of the nurses in the room before the sedation kicked in, so that she could document what was being done. Again, I woke up during the procedure. However, this time there was some pain involved as they passed a needle back and forth to band the fistula where the artery and vein are connected. Like the prior procedure, this was day surgery. My mom was able to pick me up in the city and bring me home, where Lauren and Madison were waiting. As a result of the procedure, I haven’t been able to fully straighten my left arm and I have a few “holes” left in that arm that are about the size of a Ticonderoga pencil.

Not ideal, but I opted to stay home from work for a few days to allow my arm to heal and get some rest, as sleep is still something that is hard to come by at times.  Unlike when you’re in grade school, or even high school for that matter, staying home isn’t all it’s cracked up to be. All I do is look around and see painting that has to get some and some patch work, as well as needing  to get outside and do some debris cleanup to get ready for the annual spring burn. However, with this arm and little Madison in the house, those projects are put on hold for now.

So, what do I do to pass the time? TV . . .Even with a couple of hundred channels there is very little to watch, so that gets played out pretty quickly. Eat . . .  but not looking to turn an opportunity to rest and recover into gaining unneeded weight. Social media . . .with all the “good” things going on in the world today and different views from one person to the next, this also gets  quite old pretty quick. However, the one thing about social media that has been good is all of you.

Since I hit post on the update a month ago, the support has been pouring in. Lauren and I have been blown away by all of the messages, calls, and responses we have received. As many of you know, or have at least seen, there is a fundraiser planned for the 19^th of May at the IBEW union hall in Dorchester. Although I am not very involved with any of the planning or execution of this event, I have seen the response to it . Donations from people I have never met, people I haven’t seen in 10+ years, as well as donations from people I haven’t known for very long are already rolling in. Your generosity is amazing, and more important than that, the moral support and good vibes you are putting into the atmosphere are strongly felt. It definitely makes dealing with feeling like junk a little easier. They say it takes a village to get through things sometimes, and in this case, the village in the size of the USA.  Again, messages and calls have come in from all over, wondering what they can do to help. For now, you are all doing great and we are very much looking forward to seeing you on the 19^th.

One big thing that has come up a number of times: People want to know what they have to do to get tested to see if they are a match. First, allow me to say that to have so many people ask that question is truly amazing. Much like the response, not everyone who has asked that question knows me all that well.

Organ donation is an amazing thing to even consider doing, something that isn’t talked about enough as well as something that saves lives on a daily basis. At this time, there are two people in the process of being evaluated at MGH to see if they are potential donors. When the time is right, or a decision is made as to who is a more viable option to donate, I will update you all. BUT, please know how much your thought, prayers, and messages mean to me and Lauren, as well as my family as a whole. I always still find myself singing, and well dancing along to that song, YMCA, and now I know why. I have the best village people around.

Deja Vu

Do you ever get the feeling you have been someplace, or the situation currently being

experienced has already been experienced in the past? There is a phrase for it, and I’m sure

many of you know it. It’s Déjà vu.

So New Year’s was 46 days ago. I don’t know about you all, but I was kind of happy to see 2017

go to the past. How could I say that when my daughter was born, which should trump anything else. Don’t get me wrong, amazing time and so incredible to have her join our life. On the health front however, 2017 sucked ass.

The year started off great, work was going well, and Lauren the house the dog were all good.

Found out on March 1 st that I was going to be a dad. Spent a nice long weekend out in California the middle of that month for my younger cousins wedding. It was after this trip that things started to go a little sideways. On the Monday after returning from California, I went to MGH for a follow up from the surgery in 2011. It was a long weekend without the clean eating and a little too much fun with my cousins, so the planning aspect wasn’t great. As one would expect, the numbers were a little off. My Dr., who is the same one as before the surgery in 2011 thought it would be best to get a biopsy done to verify that everything is okay. On March 22nd , myself and Lauren headed to MGH for the biopsy, I procedure that I have had 5-6 times prior to this one with no issues. You see where I’m going already, I know you do. The procedure wasn’t done in the same place, and it wasn’t the same doc doing it, but it’s MGH and I’m in the department that does this all the time so I’m good. After the procedure you have to lay flat for 4 hours with a saline bag on where they went in to make sure there is no bleeding. After which you are free to sit up, walk around and that’s usually when I would be able to leave. After laying down for that long I had to go to the bathroom. I will spare you the details but needless to say it was discovered that an artery was nicked during the procedure. That quickly turned going home to getting comfortable in a hospital bed on Blake 6. I ended up having to go for an ultrasound, a CT scan of my stomach as well as some other procedures to stabilize what was going on. As a result, things started to back up into my kidneys more and cause them distress. I ended up being admitted from that day through Saturday. Went to work Tuesday through Thursday and was watching the Bruins that night. Went to go to the bathroom before bed and couldn’t go. I kind of knew what was going on, so back to MGH and into the ER I go. It was discovered that I had a blockage caused but the hole in the artery that started bleeding again. A number of small procedures were done trying to free up the blockage, but something still had to be done about the bleed. The following afternoon, I went in for a procedure that I have never had, or thought I would for that matter. They sent a cardiac catheter into the artery in my left groin and drove that son of a bitch right up to the kidney and stopped the bleed. Crazy to think about, and not the most comfortable either. That stay took me until the following Tuesday with the rest of that week off to recover.

Fast forward to the fall. I started getting an infusion of IVIG to try to slow the progression of antibodies that were found on the results of the biopsy. Sorry I forgot to mention that before, got lost in the shit show that followed. I had a total of 7 infusions over the course of a few months carrying into 2018. During one of the infusions, while talking with my nephrologist, she said something that both surprised me and caught me well off guard. She mentioned, in passing mind you, that it is probably a good idea to start thinking about possible donors. Wait, what did she just say? I could have sworn I heard it wrong so I didn’t even ask her to clarify at the time. I mean, I knew I wasn’t in the best shape from a kidney health stand point but I thought it was just a hiccup and that everything would settle out and I would be fine for another 6+ years. 

So why did I talk about Déjà vu to start off this post? Seems weird right, that I haven’t referenced it one time yet. Well, here you go. Officially on 1/12/2018, I was added back on to the UNOS organ transplant wait list. A number of different blood chemistry numbers had to get to certain points in order for this to happen. It seems like just yesterday I was starting the process with MGH the first time in 2008. I can actually still picture the room, My doctor, Nina Rubin who is amazing by the way, my mom and dad were also both there. I was pretty nervous that first day and wanted no part of anything experimental. Now all I want to do is help out and do all the studies that I can. The upside to having another transplant so soon from the first one, I know, and remember everything that is coming. How shitty I can feel before, how I am going to feel after. All of it. And now I have Madison to keep me going with her constant smiles and ever growing personality. Will the next few months leading up to and just following the surgery be a little tougher this time around? I’m sure they will be with coordinating Madison and work, and Lauren’s work, keeping up the house (I know that Lauren does most of it but I help)

I am never sure how to share this kind of news. You all helped me in one way or another get though the first one. I know I am going to need you again this time around as well. I am sorry for the long post, but I didn’t want to share this, and have it be like, “Hey bitches I’m back and need another kidney, mic drop and done.” Many of you know all that took place last year but more of you didn’t.

Please don’t hesitate to reach out and ask any questions or just call to gab….. I know there is a

delete button but I like sounding like a mom from the 80’s or 90’s.

One love to you all.