YANA - YOU ARE NOT ALONE NOW

PROSTATE CANCER SUPPORT SITE

My journal notes follow in case Dr. Nitti is interested and for your amusement.

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1/23/10 - a high liquid (52 oz) day, low exercise (at computer). Totally dry until about 8:00 PM when over the course of a couple of hours playing Apples to Apples with friends, my male pad filled to near overflowing. Dry while sleeping but sever pain in pump area prevented decent sleep.

1/24/10 - low liquid (24 oz) day, low exercise (watched football playoffs). Dry all day. Pump appears to be very resistant to squeezing. Takes at least two if not three full squeezes and then bladder contraction to start flow. Bladder appears to have time to empty.

1/25/10 - Happy birthday to my wife!. A dry night but I know I am not drinking enough. Two small glasses of water today so far and it almost 3:00 PM. I will drink more. Wet a little climbing into the truck but not if I sit first and knock the mud of my shoes. A self-exam last night revealed a cylindrical mass attached to or in very close conjunction with the pump. No pain is associated with pinching it nor is there any "give". It's quite hard. Feels like metal to the untrained hand. A forgotten part from the surgery? Tumor? Tissue mass/scar tissue, something dislodged from the pump? A visit to Dr. Nitti may be in order. 4:00 PM another total failure with wet pants, pee down the leg, male pad totally soaked, wet truck seat, and embarrassment at the house of the mother of my son's study friend. 7:30 Pm, totally wet again. Upon inspection the unit has deactivated itself, I have not used it since awaking. Efforts to re-activate (with a sharp firm squeeze) it result in more and more fluid moving to the reservoir and the pump becoming more and more dimpled. There is so little fluid left in pump that I am hesitant to proceed for fear of passing the point of re-activation. While lying down in bed, I was able to re-activate the unit and spend a dry night.

1/26/10 - Remained activated and dry until I voided at 1:30 PM. At that time the unit deactivated. Possible reasons - user error but use is well experienced in units operation; defective activation/de-activation valve; air remains in valve unit; position of pump/valve promotes deactivation. Unit re-activation has proven impossible, to date while sitting on toilet or standing. Re-activation was achieved at bed time, after another day in diaper briefs, when lying down. Curiously, no characteristic "sound" or feel of activation was experienced. Attempts to activate will still on the toilet caused a near complete emptying of the pump bulb confounding further efforts. Appears that activation and deactivation are arbitrary and without certainty or fluid is bypassing a deactivated valve and lodging in the reservoir until successful activation while on bed. regardless of the reasons, it is not a useful and reliable solution at this time though superior to 24/7 diaper brief u se.

1/27/10 - A dry night. Voided without deactivation issues upon arising from bed. Pump is resistant to squeezing and elusive to grab perhaps causing inadvertent deactivation as sometime, two hands are required; one to stabilize the unit and one to operate the pump. Two handed operation, disappointing as it is, is carried out with great caution to avoid deactivation; sometime successfully, sometimes not. remained dry through night. No "surprising" deactivations and no conscious change of prior pumping method. It was a low stress day at the computer

1/28/10 - Up early with heavy labor - wife's car needed pushing/rocking to try to free lock transmission. Had stretch yoga class. Dry throughout. Voiding working well. Pump manipulation becoming more "natural". Bulb resistance still seems stiff but prior experience was with damaged unit. Still concerned about the difficulty of re-activation. Will experiment at some point. It truly does not feel right. Another total failure at about 2:00 PM, after visiting the toilet but checking that all appeared well. The unit was deactivated. Reactivation was a difficult, painful and frustrating and eventually I gave up only to have the unit activated withing a hour of so. When and how it happened escapes me.

1/29/10 - A day of dry but perhaps only because I restricted myself to no activity, low liquid intake and little use of the unit.

1/30/10 - Awoke dry. Drank nothing. Have been at my computer and am still dry at 1:44PM. Voiding is awkward but with care I have succeeded once and there appears to be no deactivation yet. Bulb pressure still seems to be an impediment to comfortable use of the unit. Unit deactivate after use at dinner party around 8:00 PM. Fortunately, I could leave before embarrassment. Suspect it happens because of insufficient resistance in the deactivation valve slide and/or the location/position of the pump unit. Have not yet tried to reactivate but expect I must get to bed and experience the usual pain and difficulties. Success is not assured.


Note to Dr. Nitti (1-31-2010):

Last night, via a small epiphany, I had hoped to be able to present some encouraging information about the function of my AMS 800 today. Unfortunately, an event that just occurred has been a disappointment.

Last night, it appeared that, although deactivation is way to easy and activation provides no positive feedback, activation does work and might not require the effort I apply awaiting the expected positive feedback I have grown accustomed to. The unit keeps me so dry when activated, I am hesitant to mess with even this degree of success and have worked at identifying a suitable workaround. I thought I had it too. East deactivation/easy reactivation; just have faith. I expected I might be able to reactivate while still at the toilet.

Alas, that has not proven to be the case.

20 minutes ago I completed a successful bladder voiding deliberately using a convenient and "normal" pump technique. As might be expected, the unit deactivated. But, if reactivation was easy but "silent" as I expected, I should be able to apply a few extra squeezes while on the toilet and be set to go.

That did not pass and the unit remained steadfastly deactivated.

I then went to the bedroom and lay on the bed and attempted to re-activate by applying the painful flex and squeeze techniques. To work in the past, these must be applied quite aggressively.


2-3-2010: It occurred to me last night, that if I deliberately deactivated the unit and then followed the usual procedure to activate it, I might be able to restore harmony to the universe.

I tried this experiment this morning.

Deactivation was very easy, no surprise there. I left about 1/2 to 3/4 of the fluid in the pump. I tested deactivation by peeing and I was clearly deactivated.

I then gave a quick squeeze to the pump bulb and immediately felt the swoosh of fluid and I was activated again. The pump bulb filled quickly. I appear dry. It was an easy and more normal experience than any previous attempts.

Now, we wait and observe both the level of dryness and the appearance of unexpected deactivation. I'll try to force some fluids to really work the system.

 

UPDATED

February 2010

 

My Urologist has been at the annual conference. I promised to track my experience. He are the results I sent to him:

Dear Dr. Nitti,

I hope the annual gathering of Urologists was fun and informative and that you got to meet Dr. Ng. I think she's wonderful but I doubt there was much to be learned about my situation from her. Still, there is no harm in meeting good people and maybe an alliance, regardless of how casual, will serve both your careers.

I kept a journal while you were gone. I was surprised that it was not more positive. I thought we had this thing licked. I have developed a usage technique that I thought would allow for actuating the pump while staying very clear of the deactivation button. It requires placing the thumb on the backside of the deactivation button side of the unit and using the middle finger to stabilize the unit at the tube connectors while folding the pump bulb back with my index finger. This may result in a bulb failure at some point but I thought it was working. My notes would suggest otherwise.

2/6/10 - Significant leakage. May be seating position but is my usual chair and normal seating positions

2/7/10 - Significant leaking. Unit probably de-activated during prior use. Would not re-activate until I thought to depress de-activation button firmly several times. Re-activation was then easy and feedback was received. Returned to dry state. This action is consistent with the Operating Room Instructions. I'm disappointed I did not remember this technique and was forced to re-discover it. I wonder why neither of my doctors nor any of the several people associated with AMS have used this method or called it to my attention.

The ORI also mention that the pump bulb might feel softer after activation. This is definitely not my case. The pump bulb is very firm and tubular shaped. I wonder if this is because of too much pressure in the system or a valve failure. The ORI imply that the pump bulb should retain it's flattish shape when activated and not be expanded to a tubular shape. I wonder if the units behavior cannot be traced to too much pressure in the system or a pressure balance issues caused by improper valve behavior. I'd hate to loose the pressure, I haven't tested this yet, dryness achieved if the pressure is a contributing factor but reliability and safety come first, I suppose. However, since the construction material is semi-permeable (to air only???), I may lose fluid (and dryness) over time, regardless.

The ORI also imply a pump position lower in the scrotum than I am experiencing. My current rather high placement may contribute to accidental de-activation. The second unit, easy to operate but requiring the lowering of my trousers to reach, lay nearly horizontal on the "floor" of the scrotum. This caused irritation and considerable burning pain all the time and under all conditions but especially when walking or trying to sleep. Sleep was frequently interrupted by the pain. Apparently, the unit must hang free to the extent that the bulbs tip is not resting on the scrotum's floor, therefore irritating it, yet is far enough below the groin to prevent accidental de-activation during normal use or activity. It's just a guess.

4 hours later: Voided, pump is flatter and easier to manipulate. What's up with that? I wonder if I de-activate and re-activate several times if, with each cycle, the system will begin to "normalize". I'll try that experiment. Although easier to operate the unit may still de-activate in error. I'll keep an eye open for that activity. Also, I'm still concerned about position and will continue to keep an eye on problems it may cause.

About midnight: Voided and noted that pump bulb had returned to it's extra firm and round state.

2/8/10 - Dry all day. No stress. Minimum liquid intake.

2/9/10 - Significant leakage while attempting to achieve erection. Exercise was attempted while standing and there was no recent sitting that might account for the leakage. Unit appeared activated and pad was dry, last successful voiding was more than 10 minutes hence. Pump bulb was round and firm. Leakage was significant and at one point spurted as blood was beginning to flow to corpus cavernosum. This occurred long prior to reaching climax or any significant degree of firmness. Too discourage to continue with exercise.

2/10/10 - Dry all day. No stress. Some shopping. Light fluid intake.

2/11/10 - 3:00 PM - Unrealized deactivation. Upon realization I was slightly deactivated I depressed the deactivation button several times, as mentioned above, and gave a quick squeeze to the 3/4 full bulb. There was a sense of partial, the feed back suggested the valve did not open completely, and a loss of about 3/4 of the fluid in the bulb. With little fluid remaining, I gave a good quick hard squeeze and felt the unit complete the activation. Apparently dry the remainder of the day.

2/12/10 - Tested to determine if pads were needed at all times since experience was beginning to show that with care the unit could be kept activated at all times necessary and that I was dry when the unit was fully activated. It was a computer day building an apparel catalog ; moderate liquid intake and little up and down activity. My underwear and pants' crotch were unacceptable wet by the end of the day 4 hours of work. Appears there is a slow leak either because of minuscule deactivation, a very small cuff failure, leg pressure, or some unknown factor.

2/13/10 - Worked hard for 3-5 hours burning brush, splitting logs, and loading a trailer. Lots of activity and upping and downing. Was wearing pad but did not notice any leakage. The pad may be giving me a false sense of security. It was painful as pressure could be felt building up behind the cuff when a heavy load was lifted, etc. I can understand this but it was very disappointing nonetheless. Inactivity is no sure thing as far as keeping dry is concerned but it does not result in hours of subsequent pain either. Inactivity is not a price I want to pay but the alternatives are not encouraging.

2/14/10 - Appeared dry during the day, light activity and light liquid intake and a 2 hour ride home from a weekend with friends.

2/15/10 - Wet the bed. Pump bulb appeared fully engorged. Wetting was small, 1/2 to 1 tsp. but far more that the amount left in the urethra after urinating. I have learned that immediately after urination and after the bulb has been given time to refill, there is no more than one small drop left in the urethra when milked from the cuff to the tip. Of course, if the cuff is not closed at this time, subsequent bladder activity may have time to add additional fluid to the urethra which will eventually work its way out even when lying down I suppose. Either pressure on the pump from moving my legs during sleeping, a small slow cuff failure or some unknown factor causes this leakage. (I appear to be cursed with the need to continually wear some form of protection - acceptable to many, I am sure. But, I am not inclined to spend my days in that condition especially when the pump is so difficult to actuate. I am completely disheartened.)

NOTE: The small hard cylinder (originally about the size of a 1/4 inch piece of No. 2 pencil lead) discovered in the area of the pump and apparently almost, but not quite, floating free in my scrotum after the swelling from surgery went down, has grown to an amorphous blob about three times the original size. It appears affixed to the scrotum wall. Squeeze has hard as you will and there is no pain. I have no idea what should be done about this or who should do it. I am deadlocked and can not make a decision or identify a path that might lead to diagnosis and/or treatment. Possibly something was left behind during surgery, possibly it is scare tissue that continues to expand, possibly it is something more sinister. At this point it is difficult to care. I can, at least, research it on the web and may do that at some point.