Creatinin 1.7

At our 'six-month meeting with my surgeon/urologist he expressed concern over my high-ish creatinin levels ~1.7 ( normal range of 0.7 to 1.3). These have been high since my surgery in November but he hasn't been concerned because some elevation is 'normal' following this surgery. But after 5 months the doctors start using words like 'cronic' and my surgeon wanted to take a closer look at my kidney function. 

Kidney Function: 

The Creatinine test measures the level of the waste product creatinine in your blood and urine. This test tells how well your kidneys are working. The substance creatine is formed when food is changed into energy through a process called metabolism. Creatine is broken down into another substance called creatinine, which is taken out of your blood by the kidneys and then passed out of your body in urine. 

Creatinine is made at a steady rate and is not affected by diet or by normal physical activities. If your kidneys are damaged and cannot work normally, the amount of creatinine in your urine goes down while its level in your blood goes up. [Read more on Web MD]

Since my Creatinine levels have remained high since my surgery (and both x-rays and cat scans of my kidneys have indicated a swelling of the left kidney) I was scheduled for a "NM Renal Scan w/ Lasix" test where they injected a radioactive dye into my blood which would be filtered by the kidneys and moved to the bladder. They watched the progress of this dye, with some sort of scanner, for 60 minutes, and from this they could tell what percentage of the dye was processed by each kidney. [Read more about NM Renal Scans].  I was instructed to lay as still as possible during the scan and once the techician was satisfied that I was lined up properly and all systems were good, she turned the monitor so I could watch the progress (pass the time). I could tell right away that the left kidney was quite different than the right. One glowed much brighter than the other (I think it was the left). The Lasix is injected to stimulate the kidneys and since I had been instructed to drink up to 36 oz. of liquids prior to the scan I was a little concerned with holding it for an hour (with the neo bladder). I could see the bladder filling with the dye but I had no problem lasting the hour.

I will have to wait until my appointment with the surgeon (next week) to learn the official results. From what I saw, and from what little I know, I don't think the results will be good ...

Play Ball !!

First Baseball Game After Recovery (It's so great to be back).
Shortly after I learned that I had cancer I went back to umpiring Little League baseball. At my first game back (behind the plate), I realized that doing this was one of the things that made me happy and it had become an important part of my life. So I decided not to worry so much about the cancer or about the future. I was happy doing this and whether I was allowed just a few more games, or if I get many years of games to come, I will enjoy each and every one and be thankful for the health and strength to continue.

 New Season:

Last fall, as soon as I received the treatment and recovery details from my doctors,  I began signing umpire contracts for the spring highschool baseball/softball season. Now that season has begun and last night I worked my first game; freshman boys baseball at Sun Prairie, Wisconsin (vs. DeForest). I've worked with these coaches before and some players I recognized (from Jr. leagues perhaps) so it was a friendly atmosphere and everyone was excited about the new season and as happy as I was to be there. I quickly settled in behind the plate and even thought it was a bit chilly, I felt very comfortable and happy to be back.

The game went very well. There was good pitching on both sides and we easily got the game in before dark (my strike zone may have encouraged hitters to swing the bat but that's common this early in the season).


New concerns:

Willy Makit (remember that joke? - Betty Wont)

It's a matter of time. I have to be at the ball park at least 1/2 hour before the game starts (some require a whole hour). Many schools I work for are around 1/2 hour from my house. A typical 7-inning baseball game lasts around 2 hours - but can run longer. Three hours between trips to the bathroom pushes my limits at this point in my recovery. My new bladder isn't nearly as large as the old (and much harder to hold when it suddenly gets full). So I was a little nervous about this game. It was my first test to see how long I could go under a game situation (all those ups and downs behind the plate or running around the infield).

The first thing I noticed upon my arrival at the ball park was that the porta-potty (usual for this this field since it's some distance from the school) was nowhere in sight. So I drove up to the school and talked a janitor into letting me in so I could go before suiting up for the game. This gave me another 1/2 hour. All went well through the game and about half way through the 6th inning I began getting the signals that my bladder was full.  I really had no problem holding till the game was over. Squatting behind the plate didn't help and probably made these signals come before they normally would because once the game was over I had no problem getting back home with no more signals at all. This game lasted 2 hours and 15 minutes. So with time before and the ride home I was easily able to make over 3 1/2 hours.

I feel good about this and expect it will improve with time and conditioning. Bring on the double headers.....

Help me make it through the night

First and foremost, I'm not whining! If I sounds like I'm whining please slap me. I'm posting the following for information only and in no way am I less than completely thankful for what I have. 

Going to bed used to be the reward for making it through another day. It was a welcome escape from the work and worry where I could shed all the aches and pains during the night and awake refreshed and renewed. It was something to look forward to. Now it is something to dread. What will happen when I close my eyes and drift out of consciousness? Will I wake up in an hour drenched with sweat? Will my pads and underwear be heavy and soaked with urine. Will I need to struggle, half asleep, and change the sheets. And how many times during the night? I remember these nights when our kids were little. I remember trying not to be mad and trying to be supportive because I could imagine how embarrassing it was for them. I don't need to imagine any longer. I now know this embarrassment first hand. No, I don't look forward sleep - not like I used to.

Night sweats: 
These lasted for about four months from the time of surgery. I believe they are psychological residuals of the sedatives given during the surgery. Perhaps my subconscious reliving the pain it 'felt' during the surgery - even when my conscious mind was asleep and oblivious to the traumatic pain. These sweats were very frustrating because I would wake up, shortly after going to sleep, completely drenched with sweat. Sheets, blankets, pillows, and any night clothes were also soaked with sweat. It didn't seem to matter whether I had covers on or just a thin sheet. These night sweats only lasted about four months and I was very glad when they finally stopped.

Bed wetting: 
(Copied from Calendar/Journal for April 2, 2011)

"Nights are still hard. I'm not getting the night sweats anymore but I still have to wake up every two hours or so to pee. The hard part is not so much the waking up - I'm used to waking during the night - the hard part is getting up. Don't roll over and go back to sleep. It's amazing how easy it is to rationalize laziness when you just want to get back to sleep.

"And once I do get up and go to the bathroom, it's harder to pee. There doesn't seem to be anything there unless I really push (sort of like standing up). And If I give up and don't go, I seem to just go when I get back to sleep and then I wake up with a wet pad. More fuel for the rationalization process.

"If I do go, the stream is not very full so it's hard to feel it. I usually don't have my hearing aids in so I can't hear it. So it's hard to tell if I'm going AND it's hard to tell when I'm done. With this new bladder the act of peeing is a process of alternating between pushing (bearing down with diaphragm muscles) and relaxing (either sitting up or leaning forward) until no more comes. So you can see where this might be a problem.

"Also I think gravity plays a larger role in this whole process than it used to with the old bladder. When I'm laying down, things don't work as well as when I'm upright or sitting. The Neo-bladder doesn't fill up in the 'normal' way so it may not respond to attempts to drain it. Or maybe it falls under the whole continence issue. Maybe whatever my body does to "close the drain" while I'm awake doesn't work when I'm sleeping so the bladder never fills.

Working on it: 

I take heart in the fact that the night sweats have stopped. I believe that the problems I'm having with contenence will improve with work. And my body may 'learn' how to control some of these things with time. There are a lot of 'new' things going on in there, and my mind (concious and subconcious) has to resolve these changes and continue with the healing process. Our kids had new things going on and they're minds and bodies figured it out. It just took a little time, and a little patience.

Just Happy

Sometimes, lately, I get this happy feeling - just out of the blue, you know? For no particular reason and without anything else going on. I can just be standing and looking out the window. Or walking in the yard.

It's not even 'happy'. No, that word doesn't do it justice at all.

Satisfied, content, at peace? No, not those either - but they could be part of it.

Ecstatic, thrilled, overjoyed, euphoric?  Those are other words that may be in there too, but they don't fully define it either.

It's a little like the feeling that I just aced an exam or wrote a paper that was dead on the point and now I'm just waiting to get it back so I can see the superlatives written by the grader (I will be so disappointed if there is merely an 'A+' grade). My triumph requires a response in kind. (but I digress).

This feeling seems to sit just under the surface of my consciousness and I only notice it at random times when it just pops up and says; "hey". 

There's no rhyme or reason. But it's nice when it happens and I just kind of think - wow!

Finally feeling fine.

Feeling fine!
I've met with my doctor again for another series of blood tests and follow up on my condition. I have now completed a 10-day course of Cyproflaxin antibiotic to treat a slight swelling in my left kidney and to knock down these fevers which I've been having. The fevers stopped two days into this treatment and my blood counts were slightly better. I am to continue taking Iron Sulfide tablets for anemia (low red blood count) and one-a-day multi-vitamins to help build up my energy levels. We are very happy with all this and will meet again in a month for another check. 

Looking up: 

It no longer hurts me to travel in the car (jostling of my gut from the cracks in the road ), my fevers are gone, and the night sweats are either much milder or completely gone (on any given night). 

I have been walking for exercise nearly every day (even these really cold days) and I have worked myself up to being able to do a mile with no difficulty. This is a huge boost to my spirits as I only have a month to get ready for my  highschool baseball season. I am now anxious for the snow to melt so I can begin riding my bike again.

Depressed?
During the meeting with my doctor - at the end, after covering all the physical progress - he asked me if I was having any spells of depression. I said; "No, none at all" Quite the oposite, actually. I am very happy and content with the overall success of this treatment and feel that the challenges I am facing are an incredibly small price to pay. And when taken in context with all that has happened to me - all that has been accomplished in order to save my life - quite insignificant.

Three Months After Surgery

Surgery Plus Three Months
Everything is healed now. The new bladder seems to be working. I have good control during the day (one of the 90% according to my surgeon). I am really not sure about the nights because the night sweats have been waking me up so often and I just go while I'm up.
Basically, I'm feeling good and I've started walking to build up my endurance and strength. I still don't feel back to normal and it hurts to ride in the car (bumps and cracks in the road).

I have seen my doctor - and he has seen me. 

After my Oncologist gave me a clean bill of health (cancer-wise), I returned to my regular doctor's office to talk about my remaining problems: night sweats, fevers, and fatigue.

He is very concerned about the fevers which are now spiking (between 99 and 102) every day around dinner time. He walked into the exam room and the first thing he said - after 'hello' - was 'you look anemic'. We then proceded to talk about the blood tests (including blood culture) and the CT scan results. He said there was a slight swelling in one kidney and this was a good candidate for causing the fever. All the blood tests were negative except for a borderline hemoglobin and slightly reduced kidney function.

He put me on a 10 - day course of Cipro antibiotic and started me on Iron pills and One-a-day vitamins. Hopefully this will knock out the fevers and give me some more pep.

He's not so concerned about the night sweats and says that they can be caused by just about anything. I assume he means, let's clear up this infection and then worry about the lesser problems.

You give me fever.

Last night's fever of 100.0 doesn't seem like much but I'd already taken two ibuprofen for a headache (crick in the neck) that I seem to be getting more often now too. 


For the past two weeks I have been geting a low grade fever (99 - 102) every evening around supper time. I take two ibuprofen and it goes away in about 15 minutes, not to recure again until the next evening.  I've learned that two aspirine have no effect (because I tried it one night and I had to wait four hours - with the fever - to take two ibuprofen.)

My doctors are a bit more concerned about this than they are about the night sweats but they still don't seem to know what to do with it. They keep taking blood cultures (that come back negative) and the latest was to send me back to my Oncologist (who just sent me back to my doctors saying my cancer was cured and the fever must be a blood infection).

I had thought the fever may follow agititation of my lower abdomen (riding in cars or walking tends to irritate whatever is down there). Now that I'm trying to walk at least a mile a day (to get back in shape for baseball) I figured the fever would start spiking every day as well. And it has. But now it even spikes on the days I don't walk.