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Kingston, Massachusetts, United States

Wednesday, August 3, 2011

August 3, 2011

As I was in sort of a reflective mood after I wrote the last posting, something caught my eye as I got up from my desk.  It was a medal Tommy received after he finished this year’s Boston Marathon back in April (see picture below). 

Tommy's 2011 Boston Marathon Medal
Tommy gave it to me after he came home from the marathon.  It meant a lot to me that he had given it to me for several reasons…one, he had just finished the marathon, in which he was dedicated to raising money for Joslin Diabetes Center in Boston, an organization that had helped Linda with her Diabetes, and continues to help me with mine.  Another reason, is that it is a constant reminder to me that he was willing to give up a part of himself in order for me to live – not that the six inch scar on my left side with a slightly bulging protrusion just to the right of that scar isn’t a constant enough reminder!

Later that day, I got a message from a very good friend, whom I have come to know through this blog.  In her message, she asked me how I was doing?  And I responded with the obligatory, “I feel really good.”  Although, as I found out, she was not just asking me as if we had just passed each other on the street.  There was something in the tone of her words that made me think that she wanted a real answer, and not for me to sugarcoat anything.

She asked again, this time in a more concerned tone, “How are you feeling?”  Part of me wanted to give her my wise-ass answer: “With my hands”, but something told me I probably shouldn’t.  So, I laid it all out, and in the end, it was sort of cathartic.  Over the course of the last two months, there were times where I would think to myself, “Oh, this is different from before the transplant.  But never, although, as I said, it has only been two months, had I gone point by point comparing how I felt prior to the transplant to how I feel today.

The “How are you feeling?” question was a question that Dr. Hoenig would continually ask me when I went to see her, even more so as we go close to the transplant.  And my answer to her to her was always that I felt fine.  At no point during the last several years when kidney disease was kicking my butt, did I ever feel that it was doing so – I never really felt “sick”.  In my mind, I actually felt so good, that it was extremely hard to believe that I was in need of a life saving transplant.  But that is the thing with kidney disease, most often it is such a slow moving progressive disease, you barely notice the physical outward symptoms, those that don’t necessarily show up in your blood work.

So, here, I felt, would be a good place to also share those kidney disease pre-transplant symptoms to life in the post-transplant world.  Some of you reading this that has kidney disease (or know someone that does) may be able to relate to some of these pre-transplant symptoms, and some of you may have other pre-transplant symptoms that I did not experience.  I don’t know if my symptoms are due in part to my Diabetes or are just common among all kidney disease patients.  As a reminder, I never experienced dialysis (and from what I am told, that is a very good thing), so, again, some of you may have had other pre-transplant symptoms.

So, here goes, in no particular order…

The Feeling Of Always Being Cold – One of the things that failing kidneys do to a body, is that it messes with its temperature regulation.  It can be a serious pain in the ass.  Over the last several years, as my kidney function was declining, I saw my tolerance of cold decreasing as well.  On really warm days, when the air conditioner was blasting where I was working, I would secretly go to the control box and adjust the temperature so that I wouldn’t be as cold.  Conversely, on days when Winter was just hanging on by a thread, as it would fight with Spring to see who would win out that day, days that were probably in the 50’s (after enduring a Winter in the 20’s or below), I would constantly be turning the heat up.  By the afternoon, I would be comfortable, yet everyone else could be heard saying things like, “Who the hell keeps turning up the damn heat?” 

My ability to feel heat got so bad before the transplant that there was a day about a week before hand when it was 90 degrees outside and I was walking around with a heavy Champion® sweatshirt on, and I was still feeling cold.  Flash forward to now…Recently, especially in July, we have been experiencing some extreme heat and humidity, some days even reaching into the low 100’s.  As most people were complaining about the heat, I actually couldn’t have been happier – because I could FEEL it.  And it was the best feeling in the world to be able to turn the a/c up in the car and really feel comfortable!

Dry Skin – One of the other unseemly things your kidneys do when they begin to decline in function, is dry out your skin (as well as, at times make it itchy).  I say unseemly, because there is nothing worse than seeing a fair skinned (I am of Irish decent – I never tan, I just turn red or purple as the first rays come across the horizon and then two day later it’s like I never spent a minute in the sun - ever) man in his 40’s.  Over the years, I have tried numerous moisturizing creams, and nothing ever seemed to help.  I would always get embarrassed, especially when I would just go for blood work and the technician, as she is putting the tourniquet on my arm, and say something like, “my, you have very dry, skin, don’t you?”  In my head, I would answer her with something like: “No shit!”.  This would all be fine, and probably a little normal if it was the Winter, because many people have dry skin in the Winter…but, no, this could happen, whether it was December, May or September.

Right after the surgery, I noticed that my abdomen was extremely dry.  It was almost as if I needed some sandpaper to smooth out my skin (and, no, I didn’t use sandpaper on my skin).  New skin is said to regenerate every thirty days or so.  But my skin was so dry, I was slothing the area constantly…it was like my skin was regenerating every single day. 

Now that I am two months out from the surgery, that area (my abdomen) is still dry, but not nearly as much, and the itching has nearly disappeared.  I was actually told (I can’t remember by whom, though) that the Bactrim (the antibiotic that I was put on after the surgery) may actually have the side effect in some people that makes your skin dry – if I was ever able to hit the lottery as often as I notice a side effect from a medication, I would be a very rich man!  But the best part of all, I am noticing other parts of my body that were dry before, that are now much more smooth and holding onto moisture.  It’s a nice feeling to take off a shirt and not have flakes of skin falling to the floor.  Those of you with kidney disease know exactly what I am talking about, as much as you don’t want to admit that you have noticed a mini snow storm of skin coming from your body, you know what I am talking about…your secret is safe here – I feel your pain!

Being Tired…All The Time – This was the first symptom that I can remember “feeling”.  Gradually, over the last five years, I would get the feeling of being tired more often.  This was much more than the “mid-afternoon crash” that most of us feel.  For me, this came in the form of being in a meeting or training at work, and the dreaded “head-bob” would happen.  You know exactly what I am talking about…you are sitting in that meeting, and without warning, your eyes begin to close slowly…and then it happens - somewhere between consciousness and unconsciousness lies semi-consciousness, just lurking to take over your body. 

You know it is there.  In fact, you try to fight it…you do.  In those few seconds, you fight as hard as you possibly can to hold your eyes open.  But we all know, as hard we try, all of our efforts are futile…and our necks become something resembling Jell-O® for a second, and your head crashes forward, only to snap back just as quickly the next second.  Oh, I know you know what I am talking about…and it just doesn’t happen once, well maybe at first it does, but as your kidney disease advances this scenario can (and does) happen multiple times.

It wasn’t until I was well into dealing with kidney disease that I knew this feeling of being tired all of the time was a symptom of declining kidney function.  But it makes perfect sense…since declining function saps your energy…there are many days that you are wanting to stay up and watch a Red Sox/Yankees game, but you can barely make it through the first two innings before you either fall asleep on the couch or have to crawl into bed!

Two months into my new life, I now know what others meant when they said that I would be amazed to realize that I never knew how sick I really was before the transplant.  It is like night and day…like flipping the proverbial switch.  Immediately following the surgery I was very alert, I didn’t really feel like I had been through surgery.  Now, when the alarm goes off in the morning, I get up immediately (ok, maybe I hit the snooze button once), and once I am up I stay up and feel refreshed – I can’t remember the last time I felt that way.  In fact, I don’t even yawn nearly as much as I use to.

Peeing – I was fortunate before my transplant, in that I was still able to produce urine.  It wasn’t much, but my kidneys were squeezing out whatever pee they could muster up.  As there are other patients who actually stop producing urine, I would find that a little odd and probably hard to get use to.  But since my kidneys were still producing some urine, they were also leaking (or spilling) protein.  There is actually a very easy way to see or notice if you are leaking/spilling protein into your urine – your urine begins to bubble up or foam in the toilet as you go.  The more protein that is in your urine, the foamier your pee will be.  How foamy was my pee?  I’m glad you asked…just prior to my transplant it would actually look like I was running a bubble bath in the toilet, that’s how foamy it was.  Today, I see very little evidence of protein in my urine.  In fact, when I pee, it looks like a calm, back woods stream, just as normal urination should look.

Appetite – If you were to ask my good friend, Paul, about my appetite, I am willing to bet that he would tell you that, historically, he has never seen anyone be able to put away as much food as I have been able to over the years.  However, over the last couple of years, especially the last six to eight months before the transplant, my appetite dropped like a rock.  Funny thing, though, over the years, no matter how much I ate (or didn’t eat), my weight never really fluctuated much between 140 and 150 pounds.  At the time of the surgery, my weight was 140 pounds.

Immediately after the surgery, my appetite shot up like a rocket.  I was sooo hungry.  I could not wait for the surgeon to take me off the clear liquid diet during the first 24 hours or so following the transplant.  Once I was able to have solid food, watch out.  Believe it or not, I was even finding the hospital food appetizing – hospital food!  And my appetite has not let up in the last two months.  I eat healthy due to my Diabetes/Heart Disease/Kidney Disease, but my appetite is also VERY healthy!

Now these were the most prominent symptoms that I had or observed prior to my transplant.  There are others, such as some swelling (especially in my ankles and feet) and balance issues that seemed to improve after the transplant.  Now, I have no idea if my balance improved due to my new kidney, I doubt it but it is an odd coincidence.

As I glance over at the medal once again, if that friend were to ask me right now how I was feeling, I think my answer to her may just be: “I feel…lucky!  Lucky to be alive and lucky to have an opportunity to experience many things that I may not have had the opportunity to do so if I had not received such a great gift!

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, or, by all means, speak to your own physician, or feel free to send me an email.

1 comment:

  1. Thank you for your blogging. This one I posted to facebook for others to read as well. Experiencing several of those symptoms now (at 24%) and didn't really connect the "feeling cold" to kidney function. Thought it was "just me." :-) So glad to hear you are doing well -- very encouraging to us in the "pre" stage. Thank you so much for sharing!! Kathe