June 23, 2011

Well, it has been just over two weeks now, and it is amazing how well I feel, with two minor exceptions…

Twice in the last week I had days where I felt as if I was getting a urinary tract infection – I had all the classic symptoms…burning when going, going very frequently, but going and producing very small amounts of urine.  I was good, I did what I was told, I called the transplant center.  They ordered a urinalysis and I produced a sample for them.  The sample came back negative.  However, I was told by my surgeon that what may actually be happening, is the stent that was placed between the ureter (coming from the new kidney) and my bladder may actually be irritating my bladder.  The surgeon said if this continues he would consider taking it out earlier than it is scheduled to come out…early or not, that is one appointment I am not looking forward to – I think I may actually have more anxiety over that appointment than the transplant itself.

Speaking of anxiety, I am still having issues with two things.  The first is with the new kidney.  As great as a gift that Tommy gave me, I am still trying to wrap my head around the fact that I am walking around with a part of him inside of me.  I am extremely grateful, but it is still a little weird – though, I couldn’t imagine a part of anyone else in me but a part of Tommy.

The other thing that is producing a little anxiety is getting use to all of the new medications and just the sheer number of pills I am taking everyday – 32!

My new meds include Prograf and Cellcept, both of which are anti-rejection/immune system suppression medications.  At first the Prograf was giving me headaches, but that seems to have subsided now, and the Cellcept was toying with my gastrointestinal system, but I think I am finally getting use to it.  Other new meds include, Valcyte (anti-viral), Bactrim (antibiotic), Nystatin (anti-fungal), Pepsid (to reduce the incidences of stomach ulcers since these new meds can do a number on your stomach), and Imdur (Heart…since I had some minor angina after the transplant).  So far, keeping with the med schedule has been fairly easy since my doctors set it up that I take meds only twice per day, so I do it at 8am and 8pm…and also keeping with the amount of water they want me to drink (1½ - 2 liters per day) has been easier than I thought it would be.

Next up…I get my staples removed next week – I can’t wait, because they are at the point now where I want to start pulling them out myself, though I know that would not be a pretty or pleasant experience.

If you, or someone you know is interested in organ donation, please contact: www.neod.org; www.donatelifenewengland.org, www.organdonor.gov; www.unos.org; www.donatelife.net; www.organtransplants.org; or  www.thewaitinglist.org

June 15, 2011

The deed is done!

Last Tuesday my life began again with a fresh start and a new kidney!  Tommy and I went through our respective surgeries in the morning, and by late that afternoon/evening we were both in our rooms recovering.

I was actually feeling pretty good after the surgery, some pain but not a whole lot.  Tommy, on the other hand, was a different story.  I felt bad because the nurses kept telling me that he was in a lot of pain and then had nausea from some of the pain medications he was given.  Though, I was having a little fun with my nurses as we were trying to guess how many of his nurses he had hit on since being in his room on the floor.

We actually had an unofficial race…to see who could make it down to the others room first.  At about three in the morning I was awake and couldn’t sleep.  So I asked one of my nurses how mobile I was, as I was hooked up to several machines. She said I could be as mobile as much as I would like and that she would bring the machine along for the ride.  I seriously thought about taking that walk, but then had second thoughts.  Tommy ended up beating me…he made it down to my room by nine that morning.

By all accounts from the surgeon, the surgery went well with little complication, and the best part of all is that it appears to be working, not well, but great!  My creatinine (a measure of kidney function) was 4.0 before the surgery, which is equivalent to about 15% kidney function.  One day later that number had dropped to 1.4 or close to 60% function (this is within the normal range).  The following day it dropped even further to 0.9 (or better than 90% function!) and has remained in that area since.

I have a follow-up with the surgeon on Thursday and I am hoping that at that time he will take out the staples from my incision – I have 22 of them.  I think once those are out much of my soreness and tenderness in the area of the incision will soon start to go away.

If you, or someone you know is interested in organ donation, please contact: www.neod.org; www.donatelifenewengland.org, www.organdonor.gov; www.unos.org; www.donatelife.net; www.organtransplants.org; or  www.thewaitinglist.org

June 3, 2011

Well, the time is almost here.  Yesterday it became very real…not that I need any more reminders that this is all a bad dream and I’m going to wake up and be thankful that it was, in fact, all a dream.

Yesterday, Tommy and I had our pre-admission testing done and I met with my surgeon and transplant coordinator a final time before the big day.  Needless to say, it was a long day for both of us – first meeting with an anesthesia nurse and then later with the surgeons – Tommy also saw his surgeon as well.

I guess the interesting part of the whole day for me was when the transplant coordinator and the surgeon went into detail of what will happen.  It wasn’t like “you’ll go to sleep and when you wake up everything will be done.”  No, they went into a little bit more detail, which I appreciated because, out of curiosity, I have been wondering how the surgery will go.

They said that Tommy will go in first and then I will go in about 45 minutes later.  It was explained that the plan is to remove Tommy’s right kidney and uretor (the drain in the body that goes from the kidney to the bladder) and then place it on my left side leaving my right side free for a later surgery if a pancreas were to become available down the road.  What I was a little surprised at, was that, even though they were placing Tommy’s kidney on my left side, it was ok that they removed his right one – apparently the kidneys are somewhat symmetrical and they will simply “flip” or turn over Tommy’s kidney before transplanting it into me.  For some reason, I always thought, naively, that if you were taking a right sided kidney, it would have to be transplanted on the right.

I was told my incision would be like an arch or a semi-circle, probably just about the area of where I wear a belt and that they will tuck the new kidney into the pelvis, apparently there is enough room there.  The one thing that I really cringed with was when they described the process of connecting the uretor to the bladder and then placing a stent there to hold it open – what made me cringe was the fact that about a few weeks after the transplant, they have to go and take the stent out – that will not be fun at all!

All in all, I was told that the surgery should only take about two hours…but I will wake up with what is called a “central line” – essentially an IV in my neck – it was explained that this will be used not only to flush my body with fluids, but also to deliver the initial doses of anti-rejection drugs.

Provided all goes well, and I am very hopeful that it will, my hospital stay will only be four or five days.  I want to thank all of you who have been following me through this journey…it won’t stop here, however.  I will keep writing about my experiences after the transplant is complete.  I have enjoyed seeing all of your comments along the way, as well as the many emails that I have received in support – thank you!

If you, or someone you know is interested in organ donation, please contact: www.neod.org; www.donatelifenewengland.org, www.organdonor.gov; www.unos.org; www.donatelife.net; www.organtransplants.org; or  www.thewaitinglist.org

May 25, 2011

I have started and stopped this next post several times.  In one sense it is extremely easy to write, but in another it is very difficult.  It’s about Tommy.  I want to introduce him to you in a way that shows that I am proud of him, and not just because he is stepping up to save my life, but more so to show you the type of person he is.  I have had a lot of difficulty thinking (and over thinking) how to thank him for the gift he is giving me…hopefully these words here will somehow convey that.

Tommy and I grew up on the South Shore of Massachusetts, with an older sister, Linda (she passed away in 1989 due to complications from Diabetes) and Mom and Dad.  Dad was one of the hardest working people I have ever known – he worked in masonry…at times we would ride into Boston (or through Boston on our way to a family vacation in Maine) and nothing made Dad prouder than pointing out to Tommy, Linda and I, all of the buildings in Boston that he helped to build.

Often times, when we were back at home, we would try to build our own things, or at least pretend to.  There was a small dirt pile off to the side of the house that we use to run our Tonka trucks through, and build buildings with Legos…in fact, I’m willing to bet that if we were to excavate that area today, we would probably find an old truck, some Legos and a bunch of Army men.

Tommy is younger than me by five years, though you may not know it by looking at the two of us…Tommy has also been very successful in his career – moving his way up in pharmaceutical sales from a sales rep to a regional sales manager…he has even been recognized nationally for his work in pharmaceutical sales.  In my own estimation Tommy has been extremely successful, though I am a little biased. 

In life, Tommy and I are both very driven individuals…however, I hate sales (I’m just not that good at it)…Tommy, on the other hand, has done very well.  I think we are probably both driven because of the way Mom and Dad brought us up – if you are going to do a job, do it right and if you expect to be paid for working a full day, then you better put in a full days worth of work.

Growing up I guess you could say that we pushed each other without realizing that we were doing so.  Whether it was down in Mom and Dad’s  basement, where we set up some old mattresses and would pretend we were in the WWF, or, and more often, you could find us out in the back yard playing baseball (or stickball) or soccer.  Tommy went on to be a decent baseball player, as well as a good football player in high school.

As we got older and have taken on more responsibilities, Tommy has never wavered.  In fact, he actually bought the house next to Mom and Dad.  And after Dad died, Tommy spent more time in the house with Mom and has really been the primary caretaker for Mom after her stroke and battle with lung cancer.  He has tirelessly worked with Mom in her rehabilitation and we are determined to help her walk again.

And through all of this, when I needed to ask Tommy if he would consider being tested to see if he could donate a kidney to me, he never hesitated.  When we, as a family, discussed how to go about asking people to get tested, Tommy simply said, “Let’s just see where my tests go and then we can think about asking other…there may be no need.”  In fact, there was no need as Tommy called me after several long weeks of waiting for his blood work to come back…he said that he was 5 out of 6 antigen match.

That will never be a phone call that I will ever forget.  It gave me hope…and a chance to live.

It is impossible for me to fully say how much Tommy means to me, as well as how much the gift he is giving to me means to me…I can simply say “Thank You”.

Tommy

If you, or someone you know is interested in organ donation, please contact: www.neod.org; www.organdonor.gov; www.unos.org; www.donatelife.net; www.organtransplants.org; or  www.thewaitinglist.org

May 16, 2011

My last two entries were about two extraordinary women, Mom and Christine.  As I think about it, I have been pretty fortunate with all of the extraordinary women that have been in my life – my sister, Linda, both of my grandmothers (both went by the nickname of Mommom), as well as countless aunts, cousins, friends and those from Christine’s family as well.  And as I get ready for my transplant I want to take a little time to talk about two other extraordinary women who have helped me during this entire kidney transplant journey.

The first person I would like to tell you about is Dr. Sarah Murphy.  Dr. Murphy is my Primary Care Physician.  I first me Dr. Murphy about twelve years ago when I went along with Christine to her first appointment with Dr. Murphy. 

Perhaps I had been spoiled by having such a great pediatrician (Dr. Martin Gaynor) growing up, that I judged all other doctors after him by his standards of practice as a doctor…and as you go through life and your insurance changes and you are forced to find a new doctor, you get a lot of practice trying to find the one you will ultimately be comfortable with.  So, on that day during Christine’s first appointment, I had a chance to meet Dr. Murphy, and I was struck mostly by her genuineness.  There wasn’t a feeling that we were being rushed, she actually wanted to know about us (even though we were just there for Christine).  I was hooked, and from that point on, Dr. Murphy was not only Christine’s new doctor, but mine as well.

Besides being genuine, Dr. Murphy is extremely caring and concerned for our well being.  She would think nothing of calling at eleven at night if my labs were a little off to check to see how I was feeling.  There was also a time when she had to hospitalize me for pneumonia, and she knew that I wasn’t really happy about it…but I remember waking up in the hospital the next morning,  just before five in the morning, and who was at the foot of my bed…Dr. Murphy.  Over the years, Dr. Murphy is someone that I have truly been able to count on.

The second extraordinary woman I would like to tell you about is Dr. Melanie Hoenig.  Now, if you have been reading this blog from the beginning, you may remember Dr. Hoenig from some of the earlier posts.  I was first referred to Dr. Hoenig back in 2004 by Dr. Alan Moses (who was then practicing at Joslin Diabetes Center in Boston).  Dr. Moses just felt, due to my longevity with Diabetes, that it would be smart to bring a Nephrologist onto “my team” just to keep tabs on my kidneys as I get older living with Diabetes.

Much like Dr. Murphy, Dr. Hoenig is extremely genuine, thoughtful and caring.  As the years went by and my kidneys began to show subtle signs of decreasing in function, Dr. Hoenig would reassure me that we would work together to slow the regression of my kidneys…and as my creatinine levels continued to creep up, Dr. Hoenig broached the topic of transplantation.

So when needing a kidney transplant became more and more evident, Dr. Hoenig saw that the subject made me uncomfortable and nervous, and I remember her turning to me and saying, “Don’t worry, I will be with you all the way through it.”  In a way, it wasn’t just the words she said, but how she looked in my eyes and said them that told me that this was going to be ok (though, I’m still nervous as hell about the whole thing!).

So, here’s to Dr. Murphy and Dr. Hoenig…thank you for all you have done, along with Tommy donating his kidney to me to me to save my life, you two have also played a big role in saving my life!

If you, or someone you know is interested in organ donation, please contact: www.neod.org; www.organdonor.gov; www.unos.org; www.donatelife.net; www.organtransplants.org; or  www.thewaitinglist.org

May 12, 2011

I would be remiss not to tell you about Christine, my wife, whom I met back in 1999.

I guess you could say that we met by accident.  It was just after Christmas when I went online and was looking for some Diabetes websites.  I stumbled upon this one site where it was a typical support site where people could post questions and get answers to just about anything.

Christine had posted a question about how to deal with her new diagnosis of Diabetes.  I saw the question and posted a response.  That led to more questions a newly diagnosed Diabetic would ask, and a conversation, of sorts, began to emerge.  That led to an exchange of emails for a couple of weeks, and before too long we were talking on the phone for what seemed like hours. 

At this time, Christine was living in the Washington D.C. area (originally from Long Island, NY).  I invited her to come up for a weekend and she accepted.  When she arrived she had three big bags, and as I was introducing her to mom and dad, dad looked at her quizzically and asked her, with his wry sense of humor, “how long are you staying, a month?”  You see, dad was a minimalist, so he did not quite understand the need for three big suitcases for a trip that would last for a day and a half.

Needless to say, that was the first of what would be many trips here, and soon she was looking at the possibility of moving here.  She fell in love with the quaint sea side town that Duxbury is, and the charm of the South Shore…and of course she fell in love with me and my charm as well!

As it turns out, the chance encounter on that Diabetes website was the start of what has become a beautiful relationship.  And as the years have gone by, I couldn’t imagine anything better – except more maybe a better health record.

But, in essence, I couldn’t imagine facing all of the complications I have had with my Diabetes, especially the heart disease, the kidney disease and the eye issues without Christine by my side.

Facing a heart bypass operation is scary in of itself, but now having to face not only the possibility of a kidney transplant, the definite probability of it.  I am very thankful for the support my family has shown me (how much more supportive could Tommy be than to be willing to donate one of his kidneys to me, I cannot find the words to show how grateful I am to him for this gift).  But words also cannot express how what Christine means to me as we go through this kidney journey.

I often kid her that she never signed up for any of this.  And without missing a beat, she will always turn around and say, I love you, and we will all (your family, my family and us) get through this together.

Christine and Bella

Thank you for being by my side Sunshine…I love you!

If you, or someone you know is interested in organ donation, please contact: www.neod.org; www.organdonor.gov; www.unos.org; www.donatelife.net; www.organtransplants.org; or  www.thewaitinglist.org

May 6, 2011

This Sunday is Mother’s Day here in the U.S., so I thought it would be fitting to talk a little bit about my Mom, Bridget Theresa Burke.

I can honestly say that I have probably given my mom way too much to worry about ever since she brought me into this world.  Right from the very beginning, she (and Dad) had me at the doctors and making countless trips to the hospital due to a very bad case of childhood Asthma.

There were so many times, probably too many to count, where mom was by my side trying to get me through an Asthma attack – steaming up the bathroom trying to get the steam to help open my lungs, or sitting with me out on the front porch step waiting for the ambulance to take us to the hospital when the instances were a little more severe.  Then there were the times, as a little kid, when I would have to stay in the hospital for several days because my Asthma was so bad, and mom was right there the entire time.

As if the asthma wasn’t bad enough, then came my diagnosis of Diabetes, and mom never skipped a beat.  I was scared, and she knew it.  We had already been living with the disease as a family since Linda was already diagnosed with it…but now, now there were two of us, two of her own, that would have to live with this insidious disease.  But mom never flinched.  She was always right there talking to the doctors and nurses, helping us.

When I needed a kidney transplant, one of the first people I wanted to confide in was mom.  For one reason, I thought mom would make this all better, take it all away…but this time mom’s super powers were no match for what I was facing.  But rather than seeing fear in her eyes when I told her that I needed a kidney transplant, I saw determination – determination that everything was going to be ok, that things would work out.

By this point in her life, mom had seen it all with Linda, Tommy, Dad and I…and she had even been through rough stuff of her own – survivor of two strokes, and survivor of three bouts with cancer.  She is sort of a modern-day Rocky – fighting real hard nosed battles, but in the end she somehow comes out on top.

I shouldn’t say somehow, because I have an idea of how.  She has a tremendous deep rooted faith.  A faith that began as a young girl in County Mayo, Ireland, and has grown stronger with each passing day ever since.

It wasn’t always for medical reasons that mom was always by our side growing up, she was there for all of life’s other ups and downs along the way…of course whenever we needed a dollar to run after the ice cream truck, she was there…whenever we had to eat all of our veggies before being able to go back outside to play, she was there, and whenever we had a baseball or soccer game, she was there.

So, here’s to you mom, thank you for being by my side during this difficult journey of needing a kidney transplant…happy Mother’s Day to you, and happy Mother’s Day to all of the moms out there!  I love you Mom!

If you, or someone you know is interested in organ donation, please contact: www.neod.org; www.organdonor.gov; www.unos.org; www.donatelife.net; www.organtransplants.org; or  www.thewaitinglist.org