The Reality Begins To Set In
predsboy18
Today was the final step prior to having the surgery done. No more doctor visits, no more coddling, no more tests to be run, we have officially passed the point of no return. With only 6 days remaining until my surgery, I perhaps need a moment or two of quiet contemplation, a brief moment where I can gather my thoughts, and find out how I really feel about what I am about to go through. I know that I am fine with it; I know that I am confident in the success of the transplant, and I have no worries about the surgery at all. But still, it would be nice as the days count down, to have some time all alone and just think.

Today, I made my final visit to Vanderbilt before the transplant on Thursday, and as the day progressed, I really felt a sense of relief. How, when I'm about to have major surgery, can I possibly find relief? I found relief in hearing the doctor's confidence in the surgery, and hearing that my time in the hospital would be brief, really made me feel good about the impending surgery.

Admittedly, when I heard that the date of the surgery would be only 9 days away, there was that natural sense of shock and fear, in that I couldn’t believe it was real, and that it was suddenly so close. But as time wore on, and the days counted down 8… 7… 6…, my hesitation and anxiety turned to an almost readiness that I didn’t expect. To hear the doctors unanimously agree that I would be sitting up the night of the surgery, and likely walking the following day, made me feel much different about the surgery. To hear the doctors tell that I would go home after only 3-4 days in the hospital nearly made me smile a mile wide, because the last transplant I had resulted in a 6 week stay, due to one complication after another.
I am ready. Mentally, physically, psychologically, and by practically any other measure, I am ready. I have only 6 days to wait, but I am ready.

The Downward Spiral, or How This Week Just Kept Getting Worse
predsboy18
So, my apologies on the space between posts, but I tend to get forgetful every so often. Starting from where I left off last Saturday, it has been a week of much progression in my getting this surgery done, and I'm really hopeful that it will happen soon. On Monday, my case was presented before the transplant board, which was passed without any problem, and according to what the nurse told me on the voice mail she left that day, there was no reason that this couldn't happen soon, and all I needed to do was go to Vanderbilt for a CT Scan on Tuesday. This obviously was very good news.

Tuesday rolled around, and I was up early to go to the doctor. The visit wasn't too bad, other than the fact that my blood pressure was way high, even for me. So my doctor put me on a medication to lower it. It's a medicine that I've taken before, and had bad effects from it. I didn't want to really take it, but knew that I had to, but more on that in a bit. Tuesday afternoon, I went back to Vandy for the CT Scan, just so the doctors could see the layout before going in, a wise decision. After waiting a short period of time, I had the test done, and I was outta there! Each test, and each visit moves me closer to the surgery, and feeling better.

The rest of the week for me was bad, really bad. While I'm not entirely sure if it was the medication or just the next step in all of this, I started feeling horrible almost as soon as I started taking the medicine. Wednesday morning, I woke up with the driest mouth I've ever had, and it stayed that way for most of the day. Not even a 28 oz. glass, as well as 17 oz. bottle of water could help it, and it's been that way since, despite drinking a LOT of water. Another thing that has happened is a MAJOR change in my sleeping. Now, I probably don't get the sleep I should anyway, but the past few days have been rough to say the least. I've been waking up 2-3 times during the night, and nearly dozing off during work, which is NOT a good thing, especially when your boss is standing right there, and I've just been feeling tired all the time lately. I really hope I can get off this medication, or my body adjusts to it soon, because at this rate, I'll have to quit work much sooner than I had planned.

My sister was supposed to go Monday to do all of her testing, but thanks to my doctor, who brought my appointment to a screeching halt to call the transplant clinic and tell them this HAD to be done on Friday, my sister went for her testing on Friday. Her case will be presented on Monday, and hopefully we will have a date for the surgery either that day, or Tuesday. I think that is when it will start to become real to me, but no matter, I know this is for the best, and I know that I will be better after it is over.

Moving Right Along
predsboy18
So once again, it's been a while since I posted on here, and there has been quite a bit to report. On Tuesday, I went to Vandy to get my TB test done, pretty much the final hurdle I had to clear in order to get this done. I decided to go in before work that morning, and a simple poke with a needle was all that was needed, and off I went. Later in the morning, I got a call from Transplant Services, saying that all I needed to do was get the test done (which they quickly made note that I had done that morning), and that based upon the results of that, my case would move to the next step in the process, the review board. Needless to say, the test came back negative, and my case will go before doctor review on Monday. Thursday was not a good day at all, as I awoke with a migraine, and despite taking just about every pain medication in the cabinet (all safe for me by the way) it still would not go away. I ended up sleeping the whole day, and had to stay home on Friday as well, as the after effects of the medications literally kicked my ass.

Following that, I may or may not have an approximate date, which I will report here, but I do have a doctor's appointment on Tuesday, so perhaps some things can be answered there. After that, it's my sister's turn to be prodded :) Have fun sis!

Still hoping for an early September date, like around the 2nd or so (not likely, but I'm seriously hoping). Really hoping it comes early enough that I can still make the Steeler game here in Nashville on the 19th, but my hopes for that are fading by the day.

For my fellow Predheads, I WILL be at the preseason games, just not training camp. I'm going to try my hardest to be at the Canes game on the 23rd, and go from there!

It's going to happen one of these days
predsboy18
So, as I mentioned in my previous entry, I went with my sister (who is giving me the kidney) and my dad to a meeting at Vanderbilt. I, along with about ten other people were there, many were in a similar condition, all waiting for a transplant. For the first part of it, it was more paperwork, fill this out, sign that, you know, fun stuff. My sister had to fill out the donor info sheet, and get her tests done, and bloodwork done, so now she's in the system, and she can't turn back now! MUAH HA! HA! HA! HA! HA! HA! (Ok, technically she can, but I think she's in this for good now)

ANYWAY!

We sat through a short film explaining what would happen before, during, and after surgery, then all of us patients there got a book which described pretty much everything one would need to know about what to expect during the entire process. I still need to sit down and read through all of it, from what I hear it's a real page-turner. All of that lasted oh, about 2 hours, and by 10:30 I was headed back to the Vandy clinic to begin testing.

Once back in the 'friendly' confines of Vanderbilt Clinic, It was on to talk to the social worker. We discussed what would happen, and as it turns out, I will get Medicare, and it will actually be retroactive to the 1st day of the month in which I have the surgery, so that's good.

So, then it was testing time! First on the agenda was a chest X-ray. That went easy enough, take an x-ray with my chest to the front, then one with it to the side, no sweat. Then it was bloodwork. Now, I have had lots of bloodwork done over my 28 years, but every so often there is an instance like this. Some 18 years ago, when I had my last transplant, I had to have 13 tubes of blood drawn, TWICE! Mainly because I ran a fever the night before I was originally supposed to have my transplant, which pushed everything back nearly 3 weeks, which meant tests had to be redone, and another 13 tubes of blood had to be drawn. Luckily this time, I only had to give up 11 tubes, since they didn't have to do any blood typing tests.

After that, it was a quick EKG (15 seconds quick, took longer to put on and take off the stuff, than the actual test took) to make sure my heart was in good shape, and apparently it was, because I was out of there, and on with my day.

As it turns out, the surgery won't be done until at least September, because there are only 8 transplants per month at Vanderbilt, and August is filled up, and September is 'filling up.' So as it stands now, the Steeler game looks doubtful, but I will try my hardest to make all of the preseason games for the Preds, it all depends on when my transplant takes place.

Now things start moving, or What a week it's been
predsboy18
So my last entry was a week ago, and I am certainly to blame for not keeping everyone updated on what's going on. Since the last time I posted on here, the proverbial gears have started moving, and it looks like we're moving closer to a date for this damn thing. But I want to start at the beginning, reviewing events that have happened over the past week. Last Thursday, my sister who is giving me the kidney sent me a text asking if I wanted to get together Friday night, just to chat. The cause of this is something that I had rather not get into here, but let's just say that we needed to chat.

I told her that would be fine, and we met up Friday night, and I honestly have to say that it might have been one of the best nights in recent memory. We talked, shared things, and said what each of us felt about what was going on, and that was that. I believe that's the longest we've been together where it didn't end up in some sort of argument or other incident. 3.5 hours after we started, she dropped me back off at home, and I felt that much had been accomplished that night. We now understand one another, and perhaps that was what I needed to get myself ready for what lies ahead.

So on Friday we talked to Vanderbilt, to see what was going on. We literally had not heard from them in some time, and certainly there are questions as to whether this was still going on as planned. The nurse we talked to told us to call back at 8 AM on Monday morning, so we could talk to a supervisor. We had to talk to them because my parents are going to be handling much of the stuff, since I'm still working, and can't really take personal calls while working. I was told to type out a letter giving Vandy permission to speak to my parents about everything, and things were supposed to be set, and I would hear back after lunch about when I was to go in for testing and everything.

12:00 came, and no phone call, then 1:00, then 2:00, and I started to wonder. Finally around 3, I took it upon myself to call my parents and ask what was going on, and they had literally just gotten off the phone, and it was set up for 8:30 on Thursday. Basically what I have to go in for is to be educated on what will happen, but I have an idea of what's going to happen, I'll be put to sleep, the surgery done, then wake up, and be on plenty of pain medication for a few days, likely not remembering any of my hospital stay, much like when I had a kidney removed in 1997. Following that will be bloodwork, which if I'm correct, this is where they will take not 1, not 2, not 3 or 4 tubes, but possibly up to 13 tubes of blood. That's what they did the last time I went through this anyway, TWICE! Then it's off to see a social worker to get answers about the after part of the surgery. From there, it's 7-10 days to get my bloodwork back, and my sister's blood work will be done sometime in this time frame.

If I had to guess, I'm gonna say I'm 2-3 weeks out from having this done, so there's going to be a bit of nervousness that will start to creep in as the date approaches. I'm not at all saying I don't want this done, just saying that anxiety will be a factor going forward. We are certainly pushing this as much as possible, just so that I can begin my recovery sooner, and I believe I am now as ready as I will ever be to have this transplant done.

Tick... Tock...
predsboy18
So today was another day off of work thanks to another migraine that hit at about 6:30 in the morning. Not that it was the time it started perhaps, but it was when I woke up and said "oh God, my head." So after a couple trips to the bathroom for purposes for which a toilet was not originally intended. After calling work, and saying I would be late, I finally made the determination that the migraine was not getting any better, and called back to say I would be out for the day. Luckily, I have an understanding boss when it comes to this.

Later in the day, after the migraine had subsided for the most part, I along with my dad, called Vanderbilt to see if there was any way we could get any kind of answer. The short answer was no, but you're not reading this for short answers. Basically, if I don't hear back from them by Monday morning by 8 AM, I am supposed to call them, and give permission for someone to speak on my behalf. So right now, I know exactly as much as I did 24 hours ago, the only addition is that I do know that they are working on my paperwork. So as I sit here, I am still waiting for some kind of idea as to when this is going to happen, and wondering in the back of my mind if and when I am going to start to wear down. So for right now, I continue to wait...

The waiting is the hardest part
predsboy18
As I'm sitting here, I can't help but wonder one thing, when will I hear something back? I've emailed my doctor to see if there is a way to kick this thing in the ass and get things going. I've got an appointment to see my doctor on August 17th, and to be honest, I really don't want to see that appointment happen. Everyday that I sit here waiting, (not literally sitting at home all day waiting) is one day more that I will be out in the future. I'm really hoping for something to happen around the 15th, so that I will only be out of work until about Halloween. That's what I'm hoping, but I know better than to plan these things out too much. Well, here's hoping I hear something soon!

Getting back in the swing of things
predsboy18
So, I had missed the past 4 days of work due to a migraine on Friday, and a nasty as hell cold that totally knocked me out this week. Well, I am happy to report that I am feeling much better, and had a pretty productive day at work. This is a really stressful time at work, but my boss did assure me that I could take off any time I needed to get well, and that there would be no problem with that. So, back to work I went! As I've stated in the past, I have noticed my energy level is lower than before, but perhaps that will push me to try harder, perhaps in spite of my body.

I know I shouldn't try TOO hard, because it's not just being lazy, or not putting out a lack of effort, but rather, I am wearing down. I've had this happen before, where I would play basketball in my driveway, and be exhausted, almost gasping for air after only 5-10 minutes. At the time, I knew that wasn't normal, but being that I was 10 at the time, two and two were never put together. I am happy to report that one part of that experience is thankfully missing from this time around, and that is the pills. Oh GOD the PILLS I had to take!!

At one time prior to my last transplant, I was taking somewhere in the neighborhood of 50 pills per day. Many of these were just to keep me going until the surgery could be done. This time however, I'm probably only taking 15-20 at the most. (need to count) All I'm really having to do is watch what I eat, in that potassium is a no-no, and sodium needs to be to a minimum, because of my high blood pressure. So yeah, as I have said before, some consider their bodies temples, I can openly admit that mine is a rusted out shack, and it feels like it some days. I realize that I will get no sympathy from those older from me if I start bitching about aches and pains, but damn it's annoying to have to put an effort into standing up! Anyway, that's all I got for tonight, here's hoping Friday goes smoothly, then a quick 3 hour workday on Saturday, then it all begins anew on Monday. The vicious cycle...

How to update when there is nothing to update
predsboy18
Since the "eh" news of yesterday went, nowhere, there really isn't much to update today. The only thing I can really say is that I am starting to wonder which is worse, winter colds, or summer colds. I've had one of the summer variety for the past three days, three of which have caused me much misery and missed work. I really thought I was ready to return today, but it's difficult to function when you only average two hours of sleep per night, followed by a migraine by morning's light. Not really the best way to get into the spirit of going to work. But Thursday must be different, right?

As I careen towards my date with the surgeon's blade, I know that right now, right this minute, I am as confident as I ever will be that the operation will be a success, and that all will be fine soon. I have noticed recently that I do tire a lot quicker than before, which when it started, I attributed it to my being lazy, but now I blame it on the kidney. Yeah, that's what I'll say it is! My creatinine has pretty much been stable over the past week, jumping from 7.1 last Tuesday, to 7.2 this week. Not quite as much of a jump as I thought, but I'll take it for now.

I'm really hoping that Vanderbilt calls either this week, or early next week, so I can know what to plan for. Of course, there really is NO planning for something like this, as shit just sorta happens when it wants to, I have discovered. But for me to have not had much to update on, I was able to squeeze a quick three paragraphs out of myself, so I must be doing something right! Right now, I'm hoping for a Mid-August surgery date, but Vandy may have different ideas, and I guess since they're the ones doing the surgery, I'm kinda at their mercy on that one. Either way, just wanted to update on what's going on, even though there is nothing really to update tonight.

The trick is staying positive
predsboy18
It's something that has followed me through my entire life. The idea that if I stay positive, things must get better. Those who know me will attest to my almost being annoyingly positive. Whether it's at a hockey game where we are trailing 5-1 after 2 periods, or in the case of what I'm going through now. There is always sun shining in my world, whether that is the actual case or not.

It's perhaps easier to be positive when you have people around you that care enough not to let you get to far down. Whether it's acquaintances at a hockey game, or friends so close, you practically consider them family, the trick is to surround yourself with people that will help build you up in good times AND in bad times.

I wouldn't necessarily call this a "bad time" mind you, because in reality, I'm a lot better off than many in my situation. I could be sitting here uncertain of my future but instead, I know that things will be taken care of, and that there are those out there that are genuinely concerned about my well being. I could be placed on a waiting list, and there be no guarantee that I would ever receive a transplant, but instead I have a donor, and I know that things will pretty much return to normal inside of a few months.

Yes, every so often there is a tinge of uncertainty that I allow to creep into my mind, but really I think I have done a good job of mentally preparing myself for what lies ahead. I know the pain I'll have to endure, I know the process of getting back on my feet, both literally and figuratively. With the previous transplant, I was off of pain meds only 3 days after surgery, a feat which amazed many of the doctors and nurses, and I was on my feet, albeit slowly, around a week after surgery.

I have always been a fighter when my health is concerned. When I was only months old, my parents were told to take me home, and give up all hope for me, but thanks to several doctors that disagreed, I am still here some 28 years later. There have in fact been several times in which I could have in some way said "to hell with it," and given up myself, but much like my case today, I refuse to simply give up. I have fought too hard, and too many people have invested hours, days, months, and yes, years to seeing me get to this point, that it simply wouldn't be fair to give up now.

That is why I go into this surgery ready to get it done. I've been down this road before, and with friends, family and those closer than either of those groups behind me, I am ready for what lies ahead.

**UPDATE**

My bloodwork this morning was pretty much the same as it was last week, so no major changes, other than potassium dropping big time, which is a good thing! Talked to one of the nurses, and my transplant is currently being evaluated, and we should be hearing back sometime before the end of next week as far as when I need to come in for testing. Oh how I miss getting 13 tubes of blood taken out of me! :) I'm still setting the target date for the transplant as Mid-August, but that can be changed.

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