In the two years since my prostate surgery in 2006, I have spoken with and e-mailed several with the hopes of finding answers to many of my questions. It has been a very frustrating journey for me because you see, I went into my NERVE SPARING RADICAL PROSTATECTOMY with a very positive attitude only to discover that many mistakes and blunders had taken place and I can't do anything about them. It has been suggested that one should know who is doing the surgery, either skilled hands with many procedures under their belts or procedures done by "Yesterday I finished reading the book and today I begin OJT (on-the-job training) with a live specimen!" This was my case and I now realize I made some mistakes myself by not asking questions that should have been more relevant and of the utmost importance.
I am 2 years out of surgery, 3 times with complications that followed due to catheter blockages, catheter leakages and scar tissue healing shut. Then to add more salt to the wound, the last time in June of 2007 the bladder neck closed shut due to scar tissue healing again and did not allow me to urinate for nearly 2 days and I required emergency TUIBNC - transurethral incision of bladder neck contracture surgery to re-open the very minute opening that was smaller than the smallest wire they had available.
During the surgery, they couldn't get the scope in through the opening of the penis and therefore, had to make two incisions to enlarge the opening and then when they did get through and to the bladder neck, they had to carve it out and basically do a roto-rooter procedure leaving me with a completely unfunctional bladder neck or sphincter. During the initial surgery in 2006, the procedure was supposed to be a NERVE SPARING PROCEDURE but the left side nerve bundles had already been LEGATED and caused a loss of blood 1400cc; requiring two blood transfusions and at that point they found the right side seminal vesicle bundles but were only able to identify 20% of those and did not want to risk further blood loss as was already happening. (All of this from medical notes and procedures taken from the text as written).
To make a long story short, I am 100% urinary incontinent, I go through 12-13 pads a day plus underwear and 1-3 diapers per night. I used to go through 3 folded bath towels at night due to increased incontinence due to the radiation. As long as I lay on the couch all day and get up to go every 1 hour to hour and a half I can control the wetness issue; which means not much for a social life. I have had 0 erections since the 2006 surgery, have been told that my urinary incontinence is due to the production of too much Testosterone and that I should consider castration................... Other medical issues have come about due to stress, frustration, depression and knowing that I am now half the man I used to be all because of student experimentation and/or practicing. I try to get medication increases and or changes and also seek additional medical assistance but keep getting told that I will have to be scheduled for an appointment with that particular doctor 3 to 4 months down the road.
After the TUIBNC procedure, I sought medical help elsewhere; only to find that my cancer had returned and that I would require RADIATION TREATMENTS lasting 30-36 days to which I endured 35 days that ended New Years Eve day 2007. I am now 205+ days past radiation treatments and just now getting back to getting over the tired and nauseous feelings.
I have night time sweats that leaves my pillow and sheets totally saturated and wet, blood sugar readings are constantly over 200 as I am a type two diabetic and I am unable to convince anyone that there is a problem. I am still awaiting the upgrade in medications for all of these issues from the last visit in March. I am 63 years of age as of July 15th, 2008 and still hoping for a miracle if there is one to be had, but at this point I'm rather skeptical to anything and somewhat reluctant to trust anyone as well.
I wore a catheter from July 13th to the 22nd because I had to be barded for a bladder neck contracture that allowed scar tissue to grow and close off the urethra thus disallowing voiding of urine. I started experiencing excruciating abdominal pains and found that the catheter itself had pluged. When I irrigated, I would remove all sorts of blood strings and blood clots and foreign debris which I assume is/was dead tissue from the barding. At no time after the barding did they irrigate. I was told that they weren't concerned about the blood or bleeding as this was normal and not to worry myself about it.
I personally have witnessed the drug administration procedures at the VA and it is scary to say the least. When you are supposed to be given medication for whatever and when ever; a nurse comes in with the medication in a paper cup with a cup of water for you to take at that time. The same is true when you are going to get a shot for insulin or pain or an antibiotic. They just come in and do their thing.
I have been in several hospitals across the USA in intensive care and otherwise (these are civil hospitals) and one thing I saw that was very clear. Responsibility and Accountability. They wheel a cart, almost like a mechanics tool chest around with them that requires them to use their ID badge to gain access to the drawers for medications etc and it logs their name, time, medication and the patients name and room number showing responsibility and accountability.
Why isn't or doesn't the VA (Veteran Affairs) use this/these procedures in their hospitals and clinics? The VA has no accountability or responsibility on the care and administration of drugs and medical needs of the VA Patients.
It is quite clear and evident that the VA isn't attempting or trying to keep their staff surgeons up-to-date on new procedures or send them off for additional training. I have been dealing with many of these issues now since May of 2006 and I sympathize with those of you who are experiencing some of the same conditions and experiences but in a different manner from mine.
I have personally written to the Department of Justice, Department of Veterans Affairs, Senators, Congressmen, House of Representatives and so on but to no avail at this point in time. I filed an 1151 claim and a Tort claim. I was denied any claim from the 1151 claim in May and filed an immediate appeal pointing out many infractions and negligence not to mention errors in judgment along with surgeons who claim their presence was there but in fact either they had looked away or they had steeped out of the OR; otherwise, how could so many errors be made had their presence been made?
What is going to happen when all of our soldiers start coming back from Iraq? Are they going to get and experience the same type of treatment or will it be worse? Someone once said that the system is in the shape it is due to lack of funds i.e. Money! Maybe so, but I think it goes beyond the constraints of money issues--------------
First, we need more and additional qualified/experienced surgeons to do the job right.
Second, we need to have students present in the OR to observe and learn and not use us as guinea pigs for their OJT lessons.
Third, we need staff people i.e. surgeons, nurses, PAs, and others willing to step up take Responsibility and ascertain Accountability for their actions and work.
Fourth, we need a better prescription drug program so that we don't have to wait 10 days for the Prescriptions to come to our doors after ordering them.
Fifth, we need better outreach or CBOC (Community Based Outpatient Clinics) that can give us stabilization on medical issues that appear unexpectedly so we don't have to suffer.
Sixth, We need to have these same clinics not turn us away because; THEY DON'T ACCEPT WALK INs without appointments. Ridiculous!
Finally, we want to be treated like human beings and veterans, not pigs or animals because we're a bother and nuisance to the people looking after us.
All I would like to say at this point is this, KNOW WHO YOUR CHIEF SURGEON IS GOING TO BE AND WHO ELSE IS GOING TO BE ASSISTING, don't be afraid to ask the question you are afraid to ask------THE ONLY STUPID QUESTION/S are those that NEVER get asked!
I just learned yesterday, August 4th that the surgeon who wants to perform the artificial sphincter on me in Nov 2008 has only done 15 of these procedures. Yes, ONLY 15---------scary huh! I also learned that after he performed the cystoscopy on August 4th, he recognized that I am without both the proximal and distal sphincters and stated that this is standard procedure to remove both of these. According to civil doctors/surgeons the proximal is sometimes removed but the distal is preserved. As of today, August 13th, I am having to self-catheterize myself every 3 hours in order to void the bladder as the bladder neck does not want to open on it's own to void. It build up and then signals through abdominal pain that it is time to do something.
Your comments on any or all appreciated!
On Wednesday, November 12th, 2008 I was scheduled with an appointment to see the surgeon who initially performed my prostate cancer surgery back in May of 2006. The reason behind this was set in motion by Debbie Dempsey/assistant to the administrator at Dorn VMAC in Columbia, SC. To see if there was anything that the Augusta VA could do to give me some relief from the bladder spasms, Cystitis Infection, Bladder Infection and Oral Infection. This to be opted in addition and prior to my fee basis visit to Dr. George Webster at Duke University and Medical Center in Durham, NC.
The VA did come to my residence and pick me up and took me to Augusta, GA from York, SC and back again. However, after arriving at the facility and checking into Urology and after a short waiting period of 40-45 minutes, I was called back to talk to a doctor who claimed he was part time because he spends his time otherwise at the Georgia School of Medicine next door. Dr. A.M. Smith simply went over my medical records and informed me that due to the return of cancer, radiation and laser surgery there probably wasn't going to be much anyone could do for me with regards to the incontinence, erectile dysfunction continued infections because of the presence of the indwelling catheter, including Dr. Webster.
I asked what the purpose of my visit today wows, and he replied that it was to enlighten me and make me aware of the conditions and post surgical issues due to the surgical procedures. I said, "I could have stayed home and talked to you on the phone and saved 3 hours travel time both ways for this." He said, "yes, but this way we have had dialogue in person." Really, isn't a phone conversation Dialogue?"
I asked him if he was going to examine me and look to see if there was anything that they could do and also change the catheter because I was starting to have the excruciating pains/bladder spasms and infection around the catheter entrance to the penis as well as a fowl odor again. He said, "No, that will have to be done by the Dr. In Columbia who is treating you for all of this - Dr. Brugh - I inquired about not getting any relief or help NOW for the pain and so on and was told that I should seek additional medicines and anti-biotics. The whole purpose of this trip and evaluation was to hopefully obtain temporary relief from the pain, infections, spasams and discomfort of wearing a catheter 24/7 for 80+ days. All I got was a few minutes of Dialogue and explanations of what I already knew.
Still not addressed are the following:
High Blood Sugar Readings and adjustment of meds to improve or correct with eyesight getting worse with blurry vision and burning eyes
Sudden enlargement of the Right testicle 2.5 times since May of 2008 (told that it isn't anything to worry about; 2.5 times growth?)
Documentation showing Tarlov Cyst and Lesion in spinal column that has been identified but not addressed.
A small blood filled pussy growth on upper back
Lower back pain in the Kidney region with no assurance of medical assistanc or address
Sudden loss of cavitized teeth and teeth breaking off for unknown reasons
Bowel movements that only take place every 5 to 7 days becasue the anti-biotics from the UTI infections cause this to take place
Foul odor and pus secretions around the catheter entrance to the penis due to the catheters presence
Spasms that are excruciating and cause leakage of urine, blood traces and clots around the catheter to penis region
Nauseous symptoms with the sight of food, leading to vomiting and dizziness
Frequent pressure or acid reflux conditions in the chest
Difficulty swallowing upon awakening in the mornings
Heavy yeast buildup on lips, teeth and inside mouth (currently addressed by Doctor Wells at Dorn VMAC)
Still waiting for calls from Drs and CBOC in excess of 5 and 6 months
What kind of Veteran Medical Assistance and Attention do you call this? Is this why I served my Country? Is this the THANKS I get for serving my Country? Is this the way TAX PAYER Dollars should be Spent? WHY do WE the Veterans have to pay with enduring Pain, STRESS, Depression and Emotional issues because the VA is UNDERSTAFFED and FINANCIALLY Strapped? It wasn't our fault, we didn't cause these issues and we certainly can't rendure corrections due to Ignorance, Negligence and in-appropriate decision making of the PEOPLE we elected to REPRESENT us but all We receive is RHETORIC and PROMISES that NO ONE intends to keep. Then it's Helter Skelter as to which party, The Democrats or The Republicans to provide resolutions and direction as well as repairing a system that is so flawed and outdated with reference to todays ECONOMY and the value of the good ole AMERICAN DOLLAR that is destined to be a commodity towards toilet tissue.
I am told that no lawyer is going to be willing to assist me because there's no proof of wrongful doing of the doctors or medical staff. What in the world do you call this as I just explained and documented? Is this more Government Rhetoric and another means of sweeping the dirt under the carpet as we've seen for the past 12-15 years? I know I can't be the only one or the only veteran who is shouting and asking for HELP. If there is someone somewhere who can treat the issues with respect and consideration of what has been done, why and where are we going to go from here; it would certainly be worthy of waiting for CHANGE and A NEW DIRECTION. Right now we're going BACKWARDS, NOT Forwards.
It appears that lately, all I get is pawned off and pushed around and handed off to someone else; because no one wants to accept responsibility or take accountability for the facts and documentation showing complete negligence, ignorance, failure to make solid judgmental decisions and the inability to use good common sense. I complain about the pain, the discomfort and issues about not getting blood sugar evaluations made, eyesight going to hell because of it, inability to have regular bowel movements because of all the anti-biotics and prescription drugs, spermatozoa that has appeared and grown in size to the tune of 2.5 times since May of 2008. I'm told this too is normal from the prostate cancer surgery.
I am also told that the blood clotting, blood strings and dead tissue debris that is blocking the Cather opening inside the bladder is also normal for this procedure. I have to self-irrigate regularly to obtain relief from the spasms and infections. I am currently seeing day 83 plus 14 days of the presence of the indwelling catheter. NOT FUN AT ALL!
My appointment with Dr. Webster on December 10th, 2008 at 9:00 AM can't come any too soon. The problem is that the catheter has to come out then in order for him to evaluate, diagnose and recommend if any; procedures towards correcting and reconstructing the damaged areas of my plumbing to get me or give me back a quality of life taken away from me over the past 3 years. Once the catheter is removed, a PLAN of ATTACK needs to be in motion to PREVENT the Bladder opening from closing up again. I was informed by the Augusta, GA doctor that the stints or coils normally used to keep the bladder neck opening OPEN, might not be an option due to all the radiation and laser procedures.
A letter was sent to Senator Lindsay Graham explaining the difficult series of event that took place during the surgical procedure of May 26th, 2008 that were unexpected. I can deal with some of those; but what I am having trouble dealing with is the fact that, on June 15th, 2007; a TUIBNC procedure was performed at the Augusta, GA VMAC and several surgical steps were taken and NOT documented nor was I asked to sign any kind of release or informed of any potential necessity towards the surgical cutting of the penis just inside the opening in order to get a camera/resectoscope or cystoscopy passed. NO ONE HAD ANY TROUBLE PREVIOUS TIMES FOR THIS, SO WHY NOW AND WHY SUCH AN UNDOCUMENTED AND SECRET ISSUE?
Why am I pushed around in a circle from one place to another including the ER visits at a civil hospital i.e. Piedmont Medical Center because if they didn't do the surgery or procedure initially, they can't do anything now except treat as a band-aid issue?
So here's the big issue!
WHEN am I going to get MEDICAL ATTENTION when I am enduring pain and discomfort?
WHEN am I going to get STRAIGHT ANSWERS to all of these questions?
WHEN is SOMEONE or ANYONE going to listen to what I am trying to say?
WHY are we forced to SUFFER, endure PAIN, STRESS, DEPRESSION and get no where and NO RESULTS?
I have been tolerating most of these conditions and issues now since May of 2006 and the most serious of issues since November 6f 2007 and May of 2008. Here we are nearly THANKSGIVING, 11 months after the FACT and nothing is done yet.
I apologize for possibly being repetitious and redundant; but how would YOU feel if YOU were in my shoes?
I sincerely hope that I will be alive and experiencing a better quality of life towards CHANGES to the issues and hopefully A NEW DIRECTION TOWARDS OBTAINING MEDICAL ASSISTANCE and HEALTH before I die. It would be nice to know that I have contributed in some way towards making it easier for those experiencing many of these same issues after I'm long gone; and that the Fruits of these Efforts were NOT IN VAIN.
These past nearly 3 years have certainly "BEEN A VERY PAINFUL, STRESSFUL AND UNHEALTHY LIFE CHANGING EXPERIENCE". One I don't choose nor hope to see ever again.
By the time many of you get this email, I will be on my way for the 3 and a half hour drive to Duke University for a scheduled VA Fee Basis Letter of Authorization towards seeing if the Specialist there, Dr. George Webster can fix, repair or reconstruct my damaged plumbing from 3 different surgical procedures during Prostate Cancer Surgery.
Total incontinence for 2.5 years is enough and I am looking forward towards a Positive diagnosis, prognosis and evaluation Complete by the best of the best. I can use any and all prayers during my tenure with Dr. Webster and his staff.
Upon return, I will advise all the results of my visit. I hope he isn't going to tell me he can't do anything; I'm trying to stay focused and with a positive attitude. It's time to move on and try to re-capture the time taken away from me due to these issues.
Thanks for all your prayers and thoughts.
Later: I think I have recovered from the 3 hour trip one way ordeal to DUKE University and 3 hours back again.
It was worth the wait although I was not anticipating further wait time for a resolution to the problems. Their words, "due to previous dilations and bladder neck constrictions with radiation treatments and laser surgery adding to the already complication of the problem first hand, there is NOTHING he can do right now as the catheter has only been out 20 days. There is significant evidence of scarring and the scarring to attempt to heal. Whether it (the scar tissue) is going to heal on its own and allow the opening to remain as it currently is OPEN but it is narrowed due to the scar tissue around same trying to heal."
SO, Dr. Webster wants to wait and give things as natural a chance as can be to HEAL over the next 90 days if in fact that is going to be possible. It may heal closed before the 90 days or it may not. A wait and see game.
In the meantime, I am to do the following:
Continue Self Catheterization as Follows:
Every day for one week 12-10 to 12-17 2008
If no problems persist then:
Every 2 days for two weeks 12-18 to Jan 01, 2009
If no problems persist then:
Every 3 days for three weeks 01-06 to 01-30-2009
If no problems persist then:
Every 4 days for four weeks 01-31 to 02-29-2009
If self catheterization becomes snug at anytime, go back to daily and call dr webster over the phone immediately.
They are already aware of the fact that a missed day could result in a closure and require dilating ER/OR procedures and that is when I have to also let them know of this.
The main issue right now is that they want to try and keep the bladder neck open and free of any obstruction. He does not want to put in stints or coils as they can cause problems down the road. I understand this, he will if it requires such. His main goal at this time is to get me dry and try to give me back the time I have lost during total urinary incontinence.
He and Dr. Rapaport were very concerned and interested in finding me resolution to my problem. I asked for a written copy of my visit and the prognosis notes from Dr. Webster and they are going to charge me $10 or $15 depending on the number. That's OKAY, because I need the documentation for my records.
I am going to cancel all of my appointments with the mental health department as they called the other day and cancelled me again. I do not feel that it is in my best interest to continue with medical appoints and cancellations just to talk to someone because they isn't got no one to talk to. I will try to put my depression and stress in another direction that will allow me to forget and move on with out any father duress. Contrary to what others have said or claimed, I find that I have regained some trust in Dr. Webster and Dr. Rapaport towards finding and resolving my urinary incontinence issues, even if it means waiting another 90 days. why not, I've already waited 552.5 days so what's another 90 days? Right? Personally, a patient or veteran shouldn't have to go through any of this....................... I trust this new doctor and would rather he and his associate perform the required procedures to get me dry again.
Not to mention NOT being adequately informed of ALL possible issues. Three procedures and each one caused additional problems and complications NOT TO MY DOING OR TO THE FAULT OF MY OWN.
This is to let everyone know of my upcoming surgical procedure to correct a urinary incontinence issue that has been ongoing for nearly 3 years. I will be in Durham, NC at Duke University for Pre-Op on Thursday April 30th (tomorrow) with surgery scheduled for the next morning.
My understanding is that this procedure may take a couple of hours at most. I will have to stay one day and then will be able to travel back home to York, SC but will not be allowed to drive for a couple of weeks.
My girl friend's son-in-law is going with me to make sure I get back home okay. Being a little apprehensive and somewhat nervous now that D-Day is finally here, I don't really know what to expect or anything except to hope and pray for the best at this stage. I will try to let all know the results after I return this coming weekend.
Thoughts and Prayers greatly appreciated.
Well, I am now 14 days post-op from the AUS procedure at Duke University with Dr. George Webster. I am currently in what they call a transition and healing stage that takes approximately 6 weeks for the incisions to heal and the implant device to settle in place.
On June 15th, 2009; I go back to Duke and at that time they will activate the device and have assured me that before I leave, I will be dry. I can't wait and I can't tell you how waiting for 3 years for this to happen is almost unbelievable. Many things had to happen prior to the surgical procedure and I will list them below.
1 I had a catheter removed on Nov. 20th, 2008 that had been in place for nearly 120 days. This caused much infection and bladder spasms to which the urethra needed time to heal.
2 I had an appointment with Dr Webster at Duke on Dec 10, 2008 at which time he diagnosed me and documented what needed to be done and how, but would require me coming back for a second visit in Mar 2009 to ascertain that the bladder neck was healing as well as it could.
3 The second visit with Dr Webster in Mar left a positive view and the hopes of finally fixing the 3 year long issue/s; however, a last minute decision by the surgical team towards opening the bladder neck to a wider opening and smoothing out the area without the need of inserting any stints.
4 Before the surgical procedure could be attempted and completed, one very important issue had to also be arrested and brought under control. That issue is as follows:
a. My blood sugar reading had been over 200 since going through Radiation Treatments from Oct thru Dec of 2007. Much of this due to stress, depreciation, worry and being sick and wet 24/7. Prior to the prostate cancer surgeries, my blood sugar levels were in control with an average of 125.
b. During this period from Nov of 2007 when my Radiologist sent a script to my primary care doctor at the VA clinic to evaluate my blood sugars and try to get them back under control; we were ignored until I finally got an appointment with the clinic in March of 2008 at which time I had blood work done and then never heard any more from them until around June of 2008 and then all they said was for me to continue my meds for the same.
c. I asked that my meds be increased or adjusted to get the reading back to a more normal or controllable level and they just left them at what they were. I had personally adjusted them myself by doubling the dosage amounts and after telling them that I did, they ragged me out and told me to get back on the original prescribed amounts and not to deviate from the scripts to which I followed their directions.
d. I decided that something different needed to be done if I was going to get this AUS procedure on May 1, 2009; so I went to see a civil internal medicine doctor locally who was also a diabetic physician and she adjusted my meds immediately by increasing the dosage and putting me on a new med called ACTOSE. After three weeks of this new doctors diagnosis and medicine adjustment, I am now back to a safe and controllable level of maintaining my blood sugar levels. The only way for the surgical date to be followed and kept was ONLY if the blood sugar levels were brought under 200 for at least a 10 day period prior to April 30th, 2009, the day before surgery.
5 Previous blood sugar level average from 2007 to March of 2009 were as follows:
A 7 day average over 200
B 14 day average over 200
C 30 day average over 200
6 Today pre-op and post-op surgery the levels are now under control
A 7 day average 05-2009 133
B 14 day average 05-2009 124
C 30 day average 05-2009 150
It is simply amazing to see such a drastic difference in the MEDICAL CARE given to a patient from the VA to a Civil Physician. What is even more depressing and stressful, is the fact that these issues could have been resolved at the VA level HAD THERE BEEN A COMPETENT PHYSICIAN WHO COULD MAKE THE CORRECT DECISIONS, CARE FOR THE PATIENT RATHER THAN LOOKING FOR THEIR PAYCHECK ON FRIDAY.
I know my story isn't the only one of its kind out there and I certainly hope others will do as I have done and document their cases and medical history and post it online for the world to see just what kind of treatment our VA system actually gives and how they attempt to cover up everything.
I am 4 weeks away from hopefully being relieved of 3 years of agony, suffering, depression, stress and being totally exhausted from all of this and I need to put it behind me and move forward. I will try to provide the final outcome of my visit to Duke university in Durham, NC on June 19th, 2009 for what I hope is the final leg and episode of my 3 year long battle with Prostate Cancer and surgical mistakes, negligence and ignorance..
This is the latest and hopefully final UPDATE with my condition and the scenario that has lasted for 3 years. [Hopefully Dennis won't abandon us and will keep us in touch with his onward and upward progress, demonstrating that there is indeed life after prostate cancer, even if it is a bit of a battle at times]
On May 1st, 2009, Dr. George Webster and Dr. Daniel Rapoport performed the delicate surgical procedure of an AUS (Artificial Urinary Sphincter) to correct previous surgeries that resulted in Total Urinary Incontinence. Before the procedure could proceed, there was some superficial sloughed mucosa at about 6 to 7 o'clock and this would not allow the scope to pass proximal to it. A sensor wire was then introduced alongside the scope, through the bladder neck, and into the bladder.Goodwin sounds then used to dilate to a 22-French catheter. The scope was then reintroduced. Two incisions at 4 and 8 o'clock were required in order to allow the bladder neck to spring open as it should. Additional sloughed mucosal tissue at the 6 and 7 o'clock position was taken care of using the Collins knife. The AUS device and procedure was then carried out and performed without incidence and was deemed a total success. I was instructed after coming out of recovery to get plenty of rest and wait 45 days and come back to have the device Activated.
45 days have since passed and I returned to Duke University to have the AUS activated and I am very pleased, elated and over joyed to say that I am now DRY for the first time in 3 years. No more 40 pad and diapers a day. I still wear a pad for safeguards in case of slight dribbling or leaks due to sudden moves or coughing. The sad and dramatic part of this scenario is that it could have been resolved shortly after the initial surgery in May of 2006. It wasn't and I was told that there was nothing that could be done it was something that I had to learn to live with. I even had one doctor a Urologist tell me that all wasn't lost that I was incontinent because I was producing too much Testosterone and that I could have the issue resolved by having a Castration procedure. Yes, Castration. That wasn't even a considered option with me.
In short and conclusion, 6 months after seeing Dr. Webster and his staff; I have been given the Medical Treatment and assistance that should have and could have been done 3 years ago. I have experienced what I call INCAR, Incompetence, Negligence, and the lack of Credibility, Accountability and Responsibility.
I certainly hope that no one else has to go through what I experienced and endured over the past three years. To all of you who sent emails, prayers and wishes my heartfelt thanks and appreciation is forthwith expressed.
Later: The only remaining issue left from all of this is my ED issue. I haven't had an erection since early May of 2006 prior to the initial surgery. Allegedly, they only saved 20% of the nerve bundles; so I'm not sure there is anything left to help and they refused me Viagra (the VA). Fortunately, I have a girl friend of over 2 years now who is very understanding. We have yet to be intimate and it appears that this may never come to being or change. But that's okay too I guess. Couldn't really try anything when Willy was continually bathed in urine. :o(
I did try a manual stimulation this morning and was able to acheive an orgasm but it burned like HELL, I thought I was on fire. Any suggestions? Thanks in advance.
The AUS device is working exactly as Doctor Webster described, however; an issue of leakage has been felt and I was advised on how to correct this. That being whenever I sit at my PC or Ham station in an office chair for any length of time, leakage occurs in the pads and is caused by sitting on a hard surface and the need for either a pillow, cushion or both to absorb the weight and pressure being applied to the area where the AUS device causes the cuff to flex somewhat causing the leakage. Therefore, the pillow/cushion remedy and the need to carry the same with me whenever I go to a restaurant etc.
I recently receive a certified letter from the Department of Veterans Affairs Office of Regional Counsel, Decatur, GA denying my clam for damages arising from the negligently performed surgery. Since I received this, Senator Chris Dodd was diagnosed with prostate cancer and will be having surgery immediately during the House Vacation Period during August. I wonder if he will experience any complications or if he will be up and about in 2 weeks like he claims. He has Government Medical Insurance and doesn't have to worry about a thing, like the rest of us.
My in-person hearing with a hearing judge from Washington DC was conducted on July 14th, 2009 and I was impressed with the judges comments and acclamations of being on our (the Veterans side). Allegedly they are aware of the flaws and problems and how the system is in dire need of fixing. I still have to wait the approximate 30 day period for their team, staff and counsel to evaluate the hearing session and determine if or whether there was anything done wrong. I suppose this is common rhetoric for those of us who do not have legal counsel at our side to represent us. At least this is what I have been told and is the standard process with the standard letter when you do not take legal counsel with you. Hmmmmm!
At this stage of the so-called VA game and the process of hurry up and wait to see if you're going to die or if you're going to catch prostate cancer or if what you have can be cured through therapy or prescription drugs, I do not have any idea as to what more I can do other than suffer, worry and wait. After all, I have more time than I do Money................! When you die, all they are out is a $250.00 death benefit check to your designated survivor. What do they think this is going to cover? Maybe the pillow they put your head on in the casket!
One thing for certain, I'm still alive, still able to tell my story and not willing to give up or fade away like they'd like or want me to do. We need more people and vets to tell their story and put it on the the internet and web so our country can visualize what all we've had to tolerate as veterans serving our country and ending up being the guinea pigs of the medical profession under the VAMC's Ir-Responsible, non-Accountable, un-Creditable; Negligent and Ignorant practicing procedures, not to mention their willingness to point the finger to someone else rather than themselves. One thing for certain, I'm not going to go away easily...............
Here's the latest issues concerning my battle with prostate cancer and the urinary incontinences problems.
The VA sent me a letter dated November 16, 2009 from the surgeon who initially did the surgery stating in part: "Your bladder dysfunction is secondary to a birth defect in your spinal cord which causes several years of bladder symptoms and urinary incontinence that pre-dates your prostate cancer treatment." Yet, none of my doctors prior to the VA statements show any of this of my prior medical history. Only the VA who is now trying to cover their butts for the mistakes and blunders made during the initial procedures and 3 surgeries. The letter goes on to say: "You were informed of these findings and your significant increased risk of complications and you desired to proceed with surgery"
Of course I "proceeded with surgery", as I was told that the complications issues was standard protocol to let patients know of the risks for infection and so on. I was not informed that I had a birth defect or that there were impending issues that could complicate the surgical procedures.
The letter also says "You have not come to your appointments follow-up for your cancer in 6 months despite multiple phone calls warning you that your blood tests confirm that your cancer has returned" but the last time I was seen by a physician at Charlie Norwood VAMP was in July of 2007 and when it was found that the surgery had failed I went on to radiation treatment. An they are just now finding that the blood work and tests done then show that the Cancer has returned ? Really! Let's see, July of 2007 until November of 2009; isn't that over 2 years time? And by the way, I never received a single phone call nor did I receive a letter or email
They seem to accept now that I might be eligible for a $90.00 a month restitution payment because the erectile dysfunction from this same surgery was done and caused at a VAMC facility.
The other problem is the control of diabetes blood sugars that cause increased urine flow. I have been taken off the oral meds for diabetes and placed on Insulin by a civil diabetic doctor but the VA isn't wanting to pay for the insulin. At $200.00 a pop for a 60 day supply, I am not able to afford this kind of prescription service. Need Less to say, I am not eligible for Medicare or Medicaid even though I have been tagged as a Urinary Cripple and Handicapped by the disabling disease of Prostate Cancer. I sent a transcript of the civil doctors notes from my appointment dated November 18th, 2009 to the VAMC in Columbia, SC so they could see the prescriptions written towards my diabetes and the requirement for LEVI MIR Insulin. The person in charge of overseeing this has been on leave since before that date and just got back into her office on December 1st, 2009. I received a card from the VAMC CBOC asking me to call for an appointment to get my blood tests done asap so I did and they said the earliest they could get me in was December 31st at 11:30 am as the doctor was going to be on leave and vacation and was too busy with prior scheduling to get me in any sooner.
This is the USA's Medical Care and Attention at it's finest and yet they want to implement a new Health Care Program that is in uncharted waters and has never been tried. Our existing programs are broken and need repaired, fixed and restructured yet they want to implement a new one.
I have since moved on to MEDICARE as I was eligible due to my age and found a new Civil Doctor in Dr. Kamdar in Gastonia, North Carolina. He has done more for me in the past sixmonths than the VA did in five years of treatment or half-assed treatment. I am now getting the medical treatment and encouragement that I didn't get through the VA. Make certain that you have a doctor who has performed hundreds if not thousands of the procedure you choose and knows what he is doing less you find yourself as I did and believe me "You don't want to go through what I did".
I secured an attorney last July 13th, 2010 and filed a claim against the VA. She won round one for me after they diagnosed and awarded me with 60% disability in spite of the 100% issues they left me with. She re-filed the claim and went after 100% disability plus unemployability due to their blunders and irresponsible mistakes. She said that she couldn't see how she could lose the case since it was all so cut and dried due to the thorough documentation and their negligence. That's what we're waiting on now to see just what is going to happen and what they are going to do.
2010 August I was diagnosed again with the return of the Cancer and a PSA of 22.81, Testosterone level was 195; blood sugar readings constantly over 200 even with meds; Blood Pressure elevated above Normal levels and reqired additional meds. Prior to 2006, I never took as much as an Aspirin for anything. Ten weeks ago, I began having problems with my teeth as they were becoming severely abcessed. I went to the dentist who diagnosed me with a severe case of Dry Mouth from the meds the VA had me on for nearly three years. Needless to say, my teeth were all rotten and could not be saved. Therefore, total extraction and new dentures at the cost of $6,000.00 OUT OF POCKET EXPENSE for something which I didn't cause.
A few weeks later, I went to the doctor for an examination for diabetes as I am a type one diabetic and they wanted to see if it had affected my eyes any. Lo and behold, they discovered that the VA Prescription I had been wearing was not the correct prescription and that the right lens was 2.5 times the thickness of the left lens. I had to get re-examined and get new glasses at the cost of $595.00 OUT OF POCKET EXPENSE. AGAIN, Not my fault.
So, as you can see; I have been given a 2nd and 3rd chance at LIFE with the return of cancer and I now take LUPRON Injections at a cost of $2,500.00 every 3 months. The cancer feeds on TESTOSTERONE production and the Lupron does away with the production to keep the hungry cancer cells from its food source TESTOSTERONE. Sort of like CASTRATION if you will. [What Dennis describes is what is termed ADT (Androgen Deprivation Therapy) sometimes referred to as Hormone Therpay or Chemical Castration. Unlike physical castration, the side effects can be reversed if the medication is effecive and is stopped or suspended.]
Yes, I hate it that I was deprived of my manhood after the VA surgery. However, I have learned that it isn't the end of the world. I met a Lady, four years ago this Past January and she has stuck by me like no other Woman ever did or probably would. We live together now going on three years, and we have yet to be INTIMATE WITH ONE ANOTHER. Does it bother me, HELL YES it does, but I have learned to live with it and so has she and We Love One Another Unconditionally. Maybe someday that magic moment will re-appear or come back and it will be second heaven all over again. Until that day comes along, we take every day "One Step at a time and Don't Look Back". She's the best thing that ever happened to me and I wouldn't take a million dollars for her ----NO WAY WHATSOEVER---
All I want is to get on with the rest of my life and try to live it to the fullest and best way I can. Hopefully, I can do just that but as far as the issues I'm left with; well, they can't be overturned nor undone. But I can take it one day at a time and one step in front of the other and move on.
Thanks for posting this and for allowing me to be a part of your fraternity. I think I might try to explore my chances and opportunity towards telling my story live to those who may want to hear exactly what I have been through and endured.
I know I already updated my information on YANANOW just a few weeks ago; however, after having bloodwork done 10 days ago and having an appointment with the doctor to have the results given to me plus having a CYSTOSCOPY I find it necessary to relay the following information:
1) The new PSA level has gone up from the previous 3.1 to 5.79 as of March 22, 2011. It came down from the initial 22.81 on August of 2010 due to Lupron injections that were allegedly going to take care of the cancer's presence. That no longer is going to happen. In fact, I will probably have to cease Lupron injections and immediately start Chemotherapy or one of the newer cancer drugs on the market today. It seems that the cancer doesn't care any longer that the Testosterone has been reduced and it is going to look elsewhere for its food source and hopefully the chemo will arrest it before it decides to enter the bones. This will also require bone scans and bone surveys. I believe they refer to this as Androgen Insensitive [There are, like many other aspects of PCa various phrases including AI - Androgen Independent] when cancer no longer is dependent on testosterone.
2) a CYSTOSCOPY procedure was performed and just a few seconds into the procedure the doctor was unable to get through the bladder neck. Yes, you guess it; BLADDER NECK STRICTURE prevented the cystoscope from getting through the opening. All of a sudden he broke through and I could tell when he did as there was a pop and a stinging sensation in the bladder at the same time. He said that this wasn't good and I said that this has happened numerous times before with the last time coming in July of 2007 just before I started wearing the catheter for 120+ days. Dr. Lee proceeded to tell me that the stricture was going to have to have immediate attention so Laser surgery was scheduled for April 6th, 2011.
3) In the interim the chemotherapy will begin and continue as ordered and planned. A catheter is required for 24 hours after the laser surgery. If all goes well, in three to fpur weeks; another surgery will take place. This one to correct the urinary leakage presently experienced for the past year and a half. For the past three to five days urinary voiding has been necessary every 30 to 45 minutes. Try getting a good nights rest with those frequency periods. Not going to happen unless you do as I did and that was to take 3 or 4 Tylenol PM extra strength tablets to get 7 to 8 hours of uninterrupted sleep. This second surgery requires a small incision in the abdomen to create a sling for the bladder neck to assist in the closing of the bladder neck area. You see, during the initial surgery performed by the VA; they removed both the Proximal upper sphincter muscle and the Distal lower sphincter muscle, leaving me with NONE what so ever. The sling helps to close the upper bladder neck and assists in less voiding or leakage when not required.
4) I was given a prescription for Viagra and Cialis to assist me in and with the ED issues. I now know that due to the surgical procedures by the VA initially that regaining my MANHOOD is NOT going to be available through any chemical or drug prescriptions of any kind. So, knowing that the ED issue still mattered to me and that I was still concerned about it; they are going to do a third procedure 3 to 4 weeks after the second sling procedure. The third procedure is going to be an IPP which means and stands for Inflatable Penile Prosthetus which through assistance will enable the erections to be accomplished. Not exactly the way it was planned, but anything is better than nothing at all right?
As you can see from what I have just reported and stated, that I have a hefty schedule in front of me. In spite of existing appointments for Primary Care and getting appropriate medicines, getting my new teeth re-adjusted and fitted after the 3 month healing period so that permanent dentures can be obtained and fitted and also re-adjustment of the new glasses for a 2 year old VA prescription that was not correct. This plus the fact that I am the Executor/Primary Representative for the Estate of my Mother who passed in September of 2010. Getting and keeping records and financial status reports requires additional stress and emotional periods in spite of all of this.
All of this new information has been reported to the attorneys and hopefully will make a difference as well.
My suggestion to those of you who find yourself in a similar situation or scenario; make sure you get all of your medical records, get yourself a good attorney, get second and third opinions on everything and don't hesitate to ask questions. There is nothing further from the truth as stated about a stupid or dumb question. The only stupid or dumb question is such ONLY if it never gets asked. Make certain that the surgeon and assistants who are going to perform your procedures have ample experience behind them and come highly referred. This means hundreds if not thousands of the procedures. You don't want a surgeon who has done 15 or 20 and better yet, don't settle for a student doctor who is still in college to perform this invasive type of surgery on you. YOU deserve better than that. Make sure you get it. I have to tell you that these past 5 years have been pure HELL and I don't wish to see anyone else have to go through what I have had to endure and put up with. I still have faith and hope that after these next few procedures that AI can begin to get on with the rest of my life in as normal as normal will allow. One day at a time, and one small step forward leading to a large step in time. We can't make up for lost time or for the time that was lost due to others irresponsible acts; however, we can put the time left in front of us and make something POSITIVE of it if not to simply make the best use of every second, every minute and every hour of each and every day.
Well, here it is the end of May and I'm still here writing my life story and experiences with the never ending effects of and from Prostate Cancer. Having had my second injection of Lupron in February, I was again subject to additional blood work to check the PSA level. A couple weeks later after the testing, I was informed that the PSA was at 7.24 or 7.27 which meant that the Cancer was back for the 4th time. This meant that I would have to seek other alternatives towards Chemotherapy to hopefully arrest the cancer. A bone scan was ordered and I was immediately sent to the Doctor in charge of the chemotherapy procedures. After a lengthy discussion and consultation with several alternatives presented; it was decided that I should and would proceed with a new type of treatment called PROVENGE. Just released by the FDA earlier this year and I was a good candidate for this procedure. In short, not much to it! [I hesitate to ever apply the word 'fortunate' to Dennis in the light of some appalling experiences he has had along the road, but since Provenge is rationed, maybe it is OK to use the term fortunate here.]
They draw blood and send the sample or specimen to a lab and have the stem cells withdrawn and then inoculated with whatever and replaced sending the blood back to the doctor who then calls you and you go in and sit for one hour while they slowly through an intravenous drip replace the blood. Not much to it right? So in the meantime, it's more tests, bone scans and blood work to re-check and evaluate everything to ascertain that we are on the right track and everyone is on the same page. Well, the tests proved that we were and the bone scan came back as negative, i.e. the cancer has not invaded the bones or cell yet. The PSA however came back and it still shows 5.79 and so another bone scan has been ordered.
With all of these tests and examinations, nothing was short of anything with the unexpected arrival of the bladder neck closing again for the 16th time since the original surgery for Prostate Cancer in May of 2006. This was going to require laser surgery which was performed on April 3rd to open the bladder neck again. The procedure was successful except for mild after effects from the anesthetic. Okay that is great; but now the 2nd procedure that is and was required was scheduled for May 3rd, 2011 to adjust and hopefully correct the urinary leakage that has been ongoing for over several years even after the inclusion of the AUS device back in May of 2009.
This 2nd procedure was to add a SLING or what I call a trap like in a bathroom drain or sink drain to help hold back the urine in addition to the AUS (Artificial Urinary Sphincter). The procedure was successful, but not without consequences. There are bladder spasms that are NOT related to the SLING PROCEDURE but rather to the laser surgery to re-open the black neck area and the initial surgery that left NO BLADDER NECK. Pain due to the procedure that left me with a small incision between the rectum and scrotum requiring 14 stitches for the procedure. I have had these bladder spasms constantly because when the prostate was removed in 2006, the doctors removed the bladder neck by flushing it with the bladder (rather than leaving a 1" so-called bladder neck) and then having to stretch the urethra to the bladder and reattaching it with sutures and thus giving the bladder the signal that this is an open wound and it closes or tries to close this area every 6-9 months requiring laser surgery to re-open it. Likewise the bladder is in constant squeezing and muscle activity and it is painful once the bladder has emptied. That is another reason why I have the UAS (urinary artificial sphincter device). The initial surgery in 2006 by the VA, also removed the Distal and Proximal sphincters leaving me with no sphincter at all; just the urethra that was re-attached to the bladder. Therefore, the need to have the AUS procedure in 2009.
At first I didn't think the SLING PROCEDURE was working, but now 3 weeks later it appears as though once the AUS was re-activated and allowed to work with the SLING the leakage has subsided tremendously and I can now get 6-7 hours of sleep a night without having to get up every hour to go to the bathroom. The spasms are still there unfortunately. Good thing I am retired or I'd never be able to report to or for work.
I have just been scheduled for the PROVENGE treatments starting June 8th, then June 24th and the final one on July 6th. That's right three of them and the alleged cost is somewhere around or between $30,000.00 and $90,000.00. [The latter figure is the one that is consistenly quoted] Is this going to fix the problem or correct my cancer issues? I have no idea since I had Radiation treatment for 36 straight days back in 2008 at a cost of $36,000.00 and six months after that procedure, the cancer was back for the 3rd time. They haven't been able to explain or tell me what the $36,000.00 covered or did though. So I'm rather optimistic and puzzled as to what any of our medical cures and procedures really take care of. I don't mean to sound Negative or down as I am still here to tell my story and that is what I intend on doing until the Almighty calls my name and number to the other side.....................
I think one of the factors that keep me going is the Friends and Friendships that have been kindled along this Journey. If I can provide an awareness to those still contemplating VA surgery; maybe, just maybe I can prevent other issues like mine from taking place. I have to give thanks to God and to the new doctors who are trying their best to fix what was destroyed, taken away or mutilated 5 years ago by incompetent and irresponsible doctors and surgeons.
I suppose the ultimate proof is going to be this new Provenge treatment to which I will be the first in my area here to get it. Just have to be patient and hope for the best. Thanks for allowing me to share the latest results and changes with you and I wish all of you the very best and hope you never have to experience what I have. God Bless!
Friday, June 10th, 2011 and I was rather anxious to have my blood drawn and get the new process and procedure behind me. After my arrival to the Red Cross Center in Charlotte and being introduced to the staff members who will taking my blood and administering the procedure, I was a little shocked when I was informed that this was not a 10 or 15 minute session and you leave. Instead, I was informed that the collection process called Leukapheresis is a 3 to 3.5 hour process.
Leukapheresis is the selective removal of leukocytes from the blood, which is then transfused back into the donor blood. This is done 2 to 3 days prior to the date in which the patient is to be given his first scheduled dose of Provenge. These collected immune cells are then shipped to Dendreon manufacturing facility, where they are combined with a protein that is found in most prostate cancers linked to an immune stimulating agent. The combination of your immune cells and this protein is what makes the active component of your own dose of Provenge. All of this information was not presented to me prior to the procedure and was learned after the fact and found on the internet due to side effects and issues that took place during the collection process approximately two hours into the procedure. These are the facts and events leading up to my having to have the technician stop the procedure because I couldn't tolerate the pain and discomfort from the collection process.
First of all, it must be known that when hooked up to the machine doing the work, an IV is placed into each arm while the arm is held in a flat position with the hand and arm resting on an arm support while lying on ones back in a reclining type table or chair. The right arm is the output source from which the blood is drawn out of the body and into the machine for separation and collection. The left arm is the return line which replaces the blood from which the separation and collection process took place. About an hour and 45 minutes into the collection process, the blood pressure cuff that had been placed on my left leg began to feel like it was cutting my leg with a knife every time it actuated to monitor my blood pressure. At the same time, it felt like my feet went to sleep and I had no feeling what so ever in either foot. It was then noticed that my feet were swelling and you could actually see how the leather of my shoes were being pushed out. The technician and doctors noticed this about the same time and therefore, my shoes were removed but it didn't matter as the feeling and sensations were still there. Next, my socks were removed and it was noticed that my legs were swelling something that has never happed to me before. Within a couple minutes, severe and very painful cramps began to take place in the calves of my legs. If you've ever had a Charlie horse in your leg, multiply that by 2.5 times and in both legs at the same time together and you know what I was experiencing.
It was then that I began having bladder spasms, rectal spasms, penile spasms, stomach spasms and the urge to have both a bladder and bowel movement. The bladder movement was no problem it just let loose and I couldn't control the urination due to the neurogenic bladder and urinary incontinency. In spite of having an AUS (artificial urinary sphincter) and a recently installed sling procedure, the bladder simply emptied at will due to the process at hand. The technicians then told me they couldn't stop the process unless I was willing to risk the chance that no collection would be complete as they can't start and stop it during the 3.5 hour procedure. At this point, I felt I had no choice but to end the procedure as I simply couldn't tolerate the pain and agony I was experiencing at the time. They proceeded to shut the system down but in order to do so, they have to put back part of what they took out before shutting the system down. In spite of giving me several tums (calcium) which is supposed to alleviate some of these symptoms, it didn't help me at all.
After the machine was stopped and the process ended, it took nearly 20 minutes or better for my body to recover and get back to normal. They kept me under observation all this time and didn't allow me to leave for another 15 or 20 minutes. I felt totally drained and in spite of not having another person to drive, I drove myself home to York, SC from Charlotte, NC a distance of about 35 miles. Upon arriving home, I went straight to bed and fell asleep within minutes around 6PM and didn't awake until the next morning around 5:30 AM.
For two or three days, my urinary leakage and incontinence increased once again even though I was taking the Detrol LA and Toviaz medication prescribed by my urologist. It was like the flood gates had been removed and I just flowed uncontrollably at will. It is now four days since the Leukapheresis procedure and the bladder issues of leakage and urination have not subsided one bit. Instead, they have increased and the medication doesn't seem to be working any more. This procedure and process requires three separate trips to the collection site and three trips to the doctor who is putting the Provenge back into your body. I don't think I can nor my body can tolerate this procedure again. Since I was not able to give them the required amount of collected material, I have to go through the procedure again to include a total of three collection times and I'm just not up to that tolerating level. The Red Cross is allegedly supposed to be contacting Dendreon and my doctor to see what can or should be done with regards to all of this and if there is a way to proceed or if the entire process should be scratched.
I learned the hard way as there was NO Patient Awareness provided as to what the side effects were or are during the process and what side effects there were or are during the infusion procedure. Side effects to the Leukapheresis and infusion procedures were not made known to me at the time of the procedures. Some of the possible or most common side effects reported from the infusion procedure but not limited include the following: chills, fever, fatigue, weakness, breathing problems (shortness of breath, decreased oxygen level and wheezing), dizziness, headache, high blood pressure, muscle ache, nausea and vomiting. It is important to note that a thorough understanding of the process and procedures should be given before anything is started and that the patient awareness has been given. Knowing what to expect or what can possibly happen is of the most important essence for a patient going into these procedures reather than going in with blind folds on and knowing nothing.
June 24, 2011: Well, the second procedure with the Provenge treatment has come and gone with several issues. I will try to be as brief as possible but without reservation of conditions. I was given a script for Vellum/Diazepam to relax the bladder and ease the stress factor. It worked to a certain point and that point is this. It stopped the leg cramps entirely but migrated to the bladder where during the procedure about an hour or hour and a half into the session, the bladder decided it was full and wanted to empty. Now remembering from a previous post, I have an AUS (artificial urinary sphincter) that needs and requires activating whenever the bladder senses full capacity. Also remember, I had just had a sling procedure a couple weeks prior to the Provenge treatment. Activating the AUS didn't seem to help or make any difference. Unfortunately, moving my arms with IV's in both caused the needles to infiltrate and required removal and replacement. After two attempts to do so, the pain was still unbearable and we had to stop the procedure.
June 27, 2011: Fortunately, there was enough product collected and I was able to get the first dose of Provenge three days later. The infusion process where they drip the Provenge product back into the body went rather well but not without side effects here as well. Towards the end of the hour and a half procedure, I developed chills that required a blanket to stay warm with but that was a known side effect and I was prepared for it.
July 8, 2011: I was about ready to call it quits for this procedure; but my doctor told me to trust him and try it one more time and that they would write a script for Lorazepam. This will be the third attempt at the procedure and I would take one tablet when I first got up in the morning and then one more tablet when I got to the procedure site. After an hour and a half or so, the bladder spasms or cramping were back and activating the AUS made no difference at all. I blew out both IV's and they attempted to replace them but after three attempts in the right arm a vein wasn't visible or could be found to continue so it was agreed upon to discontinue the procedure with hopes that enough product was collected to continue with the second procedure on Monday July 11th, 2011. Three and a half hours still seems to be extremely long towards collecting the necessary product. Maybe a shorter time duration could be made possible but again, I'm not a doctor and I can only say and report what I experience. It appears to me that with all of my issues and existing conditions that the side effects and cramping seems to follow those areas for what ever reason.
July 11, 2011: Well, Monday morning July 11, 2011 has come and gone and I was notified that they were unable to do anything with the product sent as there wasn't enough. I will be in touch with both doctors, the urologist and the oncologist to discuss future and or further attempts. IMHO, it seems that maybe the AUS device may have to be de-activated so that it is fully open and allowing the bladder to continuously drain during the apheresis' procedure. Since I am not a doctor or physician, this needs to be studied in great detail to see if it is feasible or probable to do so without reservations of any kind when a patient with a neurogenic bladder, urinary incontinence, an AUS device along with a Sling procedure in place; it might warrant additional studies to determine the effects of these already existent conditions and status as to whether or not it would be possible for the procedure to go without any issues. At this stage of the process, I don't feel up to another attempt towards following up with this procedure. The day after the procedure, I went to use the bathroom to void myself and fell forward into the tub alongside the toilet. An hour or two later, the same thing happened but this time I fell forward into the wall. I spent the rest of the day in bed trying to overcome this problem. This new experience of disorientation seemed to last about 4 to 6 hours. I have no idea as to why or what caused it. It's gone now and I seem to be back to normal again. If there is such a thing as NORMAL.
The following information may not seem to be pertinent towards any of this but I felt compelled to bring it to the attention of many and let you see what can, will and does happen when dealing with the VA. On June 30, 2011, I received notice that I had been scheduled for a C&P (compensation and pension) appointment to determine my employability in the private sector. Good grief, now they want me to go back to work after I went on early retirement in 2007 at the age of 62. This appointment was scheduled for 10 AM on July 8, 2011 which was the same day of the Apheresis' procedure already scheduled by my personal civilian physicians. Since the VA has not seen me or done anything towards my cancer issues since May and June of 2010, I felt it more important to keep the newly Medicare acquired physicians as they are the medical professionals assisting and helping me now which is more important. This C&P appointment has been re-scheduled for July 22, 2011 at 1PM. Since I'm nearly 66 years of age and have been retired since age 62 due to the conditions with prostate cancer and the VA, I don't see or understand how and or why they feel a need to find me employment when I am totally 100% urinary incontinent, 100% ED, 100% neurogenic bladder, high blood pressure, high blood sugars and high anxiety levels with high stress levels that require additional medication to keep it in check. When you have to or are expected to tell a potential employer that you require bathroom breaks every 30 minutes to 45 minutes to either void or change pads, they don't want to talk any further with you; so I suppose it's safe to say that the VA has a miracle program that will allow this. At any rate you never get a second interview and the first one is cut off rather abruptly. What company is going to give special treatment to its newest employee with frequent bathroom breaks over the other employees? None that I am aware of.
To summarize at this stage, the side effects that follow this new procedure need to be mentioned again. First of all, dry mouth, constipation followed by diarrhea, disorientation and very tired conditions following both the apheresis' and infusion processes. Dry mouth and constipation are the side effect from Detrol LA, Toviaz and Vesicare. Stool softeners aid the constipation along with a bowl of cream of wheat. A side effect from the Diazepam and Lorazepam appears to be dizziness, drowsiness, loss of coordination, constipation and others. Detrol LA has similar effects as well and when you combine all three together at the same time it must be one heck of a cocktail. I keep all of my doctors involved with this procedure and try to stay on the same page with them as well. This is a new process and procedure and I personally think there needs to be additional studies and work done in order to continue. Everyone is different and therefore everyone needs to be treated differently.
July 11, 2011: At this time, I don't know if what has already been done with the procedure has taken an effect or done any good as it is really too early to make any sort of conclusion without further studies. This was the third try and it didn't work out quite as expected. Time will tell I suppose. This coming Wednesday July 13, 2011 I will be having a new procedure in the office called Interstim where wire are attached in the lower back to the nerve bundles that effect control of bladder use and voiding. A small voltage and or current are used to regulate this control; something I have been without now for 5 and a half years. After the 10 day trial period, if it is a positive means of control; a date will be set for another trip to the OR for permanent placement of these wires and so on underneath the skin and then controlled with a remote control device. On July 25, 2011 I am scheduled to have the temporary wires removed and the date set for permanent installation if it worked.
After looking back through the past five and a half years, I seem to have developed a story upon story through a journey that I would have never believed possible if they would have told me five and a half years ago. I am rather optimistic but still hopeful that something is going to turn this all around and allow me to have a respectable and functioning life in the near future. It's funny how you sit and wonder, you think, you ponder over everything that's happened so far and then you try to piece together the things that didn't work and try to make sense out of why or why not. It is definitely a learning experience and one that I certainly would not wish on my worst enemy. The good thing about all of this is that I'm still here able to tell my story to those who want to listen. It's not fictional, it's not scary although there are times I have had my doubts. This is a real life journey and an excursion chocked full of events and activities many would simply not believe, but that's why I decided long ago to document as much as I could to help others avoid any possibilities of the same.
July 15, 2011: Today is a special day as I turn 66 years of age today. Nothing special, just another day and another number. I do have an appointment with my Hematologist and Oncologist Dr Patel. Dr. Patel wanted to explain and show to me the PSA results over the past 8 to 10 weeks with reference to the treatments.
First of all, on May 06, 2011 the PSA recorded after the blood workup was 7.6 prior to the Provenge initial treatment. If you remember the first treatment was not a success due to not enough products collected to provide a sufficient infusion of the proteins from Dendreon. However the second procedure was successful and enough products was collected to provide me with the first Dendreon infusion of the new drug.
Secondly, an additional blood workup was ordered to test the strength of the white blood cells and to make sure everything was still okay and it was. They decided to check the PSA level as well while they were at it. So on June 14, 2011 the PSA came back with a reading of 18.4. It's growing again somewhere. Anyway, the third procedure to collect the product for the Provenge treatment was scheduled and met head on only to find that it would not make the completion process to obtain enough product to give me the second infusion out of three required. Side effects from bladder spasms caused extreme discomfort and cramping that caused me to more my arms to activate the AUS device when the arms are supposed to remain stationery during the 3.5 hour process and needless to say I infiltrated the needles and they were unable to find a vein to re-insert them adequately and to continue. I then said enough is enough to just shut it down as I couldn't take the pain any longer.
On July 7, 2011 I had an appointment for blood work and it was done and a new PSA check was done only to find that it was now up to 61.7. It was growing aggressively and Dr. Patel said that it is Terminal and the only thing left to try is to continue with the injections of Lupron which slows and stops the Testosterone production which is a cancer food source. They will also place me on a new drug released just 4 or 5 weeks ago called Aberaterone which is taken orally and should produce no side effects.
After being told that my PSA now stood at 61.7 and was aggressively growing; I made the dumb mistake of asking the one question I shouldn't have asked; but I needed to know. I said well Doc, 61.7 so "How long do I have with it this way?" I could immediately see in his eyes he was going to regret telling me but he looked me square in the eyes and said, "Mr. D........., I'm not going to sugar coat any of this and since you asked, you have a right to know everything. At the rate it is progressing, you might have two years at most." At that point I totally lost everything and it had been probably 25 years since I cried the last time. But being told this on your birthday was not something I was really expecting to hear or have to deal with. It took me nearly three hours to gather my senses, pick myself back up and begin to deal with all of this new material. [The question that Dennis asked is a very difficult one to answer because there are so many factors. There is no doubt that Dennis is at risk, but.....men with worse diagnoses have survived for longer than two years - and see The Elephant In The Room.]
In summary: In the past 4 to 8 weeks, I have had a laser surgical procedure to re-open a bladder neck stricture, a surgical procedure to correct leakage called a sling, recently a procedure called an interstim which is supposed to correct bladder issues by finding the nerves and getting the nerves to take control; again. This of course is a test cycle for ten to eleven days to see if it is going to be productive or not. If it is, then it is surgically implanted under the skin and a remote control device is used to adjust the voltage and current gain settings. Spending the past five and a half years like a new born infant with 24/7/365 urinary issues is not fun at all and certainly not enjoyable especially when it comes to trying to get 7 or 8 hours of uninterrupted sleep every night. They have also started me on prescriptions of anxiety and depression meds to try and calm my body down and see if we can't get things under control again.
Then next Friday, I have to drive to Columbia, SC VA hospital so they can test me and see if I am employable at all with and through their C&P Evaluation. After all, I just turned 66 years of age and have been on Social Security Retirement since early age 62 as I could get employment then due to all of this; so now they want to see if it is possible to re-enact the scenario and get it done this time.
My major concern at this point is to be left along and allow me to continue my life in as productive and normal manner as can be expected without a bunch of idiots and imbeciles trying to screw things up more than they have. Just allow me the peace of mind and some happiness to go along with it that will allow me to at least say that I tried and attempted to lead a structured life that was in God's own Way.
[Dennis sent this through by e-mail while the site was down, so the dates and times are a little out. Hopefully he will let us know the latest position in due course.]
Well it's been a while since my last update and there is a reason for this. I will start by saying that it hasn't all been a journey that was exciting or enjoyable and the latest result was good but nothing to really smile about yet; so we are waiting another month to see if things stabilize, go down or go back up. Here's the story below.
To summarize the PSA results, in August of 2010 the PSA was 22.81; Mar of 2011 it went from 3.5 to 7.9 or so
May, 2011 it went up to 7.6; June it was 18.0; July 7 it was 67.0; July 15 it was 55.0; July 18 it was 49;
July 19 it was 57 (be it noted that the July 18 data was from the VA); August 19 it was down to 9.
Okay, I have had a bladder neck stricture procedure performed by Dr. Lee in April of 2011 to re-open the bladder neck for urinary flow control. In May of 2011, Dr Lee performed a Sling procedure to assist the issues of urinary leakage. In July Dr Lee performed a temporary Inter Stim procedure in his clinic to see if this would possibly help and or aid my urinary problems and it appeared as it would do so indeed. In August 2011, Dr Lee performed the permanent interstim in the OR and to this point today, it seems to have given me a life style back that I was without for over five and a half years.
I was having to get up every 45 minutes during the night to go to the bathroom to void and that certainly didn't leave much time for sleep if anything it caused sleep deprovation. I am now confident that this last procedure has accomplished what Dr Lee set out to do and that was give me back a life style that I could finally live with and be confortable with. I now get up twice a night to go to the bathroom. If I go to bed a 9PM I am up at 12:30 AM or 1:00 AM and again at 3:30 AM and finally again at 5:30 quarter to 6:00 AM when I stay up. Sure beats the aforementioned time frame. So I am able to get a good 7 to 7.5 hours of sleep and that is wonderful.
I had to stop the PROVENGE treatments as I simply couldn't tolerate the ongoing side effects during the 3.5 hour procedure to draw blood for the PROVENGE cycle. I optioned for a new drug administered orally for chemo therapy and it is called Zytiga and I am required to take 4 each of 250MG tablets every day for a total of 1000 MG daily. I have been on this drug now for nearly 8 weeks and will start the 9th week this coming Saturday, October 1st. They want to see by the middle of October if the PSA has either leveled off, gone further down or is going back up before we smile about the progress. Hopefully it will be lower or the same.
I can honestly say that it has certainly increased my appetite and that my blood sugars for diabetes is held in check with an average of 122 to 130 daily Blood Sugar check and 50 units of insulin every morning. The Lupron shots to lower or curtail the production of Testosterone has been a big success while also diminishing my sexual appetite. They can fix that thru an IPP procedure that means another surgical procedure and having to deal with pain again for a few weeks and I just decided along with my girl friend that it just isn't part of the equation or something that is adversely important or a matter of life and death that I do so. We've been without the sexual intimacy now for nearly 5 years and we both know how we feel about one another and that it hasn't affected either of our relationships with each other. In fact, I personally feel that it has made us both stronger and closer so why fix something when it isn't broke?
My experience and journey this past year has been one of splendor and amazement all due in effect to the following Doctors and Surgeons who are taking care of me now. They are as follows: Dr Valedon my Primary Care Physician, Dr. Kamdar my Urologist, Dr Lee my Urologist and Surgeon, Dr Garrido my Optomitrist, Dr Clinard my Dentist and Drs Patel and Charles my Oncologist. Each one of these doctors played a definitive role in getting me and my health back to a normal life style after the VA let me down back in 2006 and 2007 when they said nothing further can be done that I needed to suck it all in and deal with the changes as this is what it was going to be like for the rest of my life, not to mention that they (the VA) had done nothing wrong that all of my issues were the cause of childhood birth defects. Who would you trust? The VA or Professional Skilled Doctors who know what they are doing and submit a plan to you as to how they are going to follow through with this plan and get the job done. They have done more for me in the past year than the VA did in their 4 years of guessing and passing the buck.
There is another group of people whom I need to pay respect and gratitude to but I will hold off at this time until further results are made available or I am told that it has happed. I must also say that I owe several opportunities to our Lord, Jesus Christ fort giving me the opportunity to continue to tell my story as it has happened and taken place so that others can read with no uncertainty that they need to check out their sources and doctors before allowing any procedures of any kind to be performed before they jump into the fire and get burned as I did. Within the next few week, I hope to be able to report with certainty that the cancer is either in check, remission or there's nothing further that can be done. At any rate, the journey has certainly be educational, but not entertaining; it has been life threatening, but not the end of the world. It has taught me to be aware of all of my faculties and to appreciate each and every day as it begins its new day through its end and to anticipate a better day tomorrow.
Later: All I can say is that for now PSA is back down to 10 rather than 67 as to what it was a few months ago. The Zytiga appears to be doing its job but there is one other area that is still the same and I'm so tired of having to deal with it every 6 months.
First of all, in May of 2011 I had a laxer procedure performed to re-open the bladder neck as it had closed
Secondly, This happens EVERY six months and sometimes even sooner due to how the procedure was done by the VA.
Third, I had a second procedure done in June when They installed a Sling to help reduce the leakage
Fourth, in July a temporary Inter stem procedure was performed in the office to see if it might work
Fifth, the first of August the Inter Stem procedure was performed and correctly placed in the fatty area of my lower back
Sixth, some of the drugs and medications I have to take give me dry mouth and constipation which is Normal side effects
Seventh, It's now November, so count from May-June- July- August- September – October is 6 months and on the 31st of October I was in the ER because the Urinary track and the opening at the bladder was closed again (every 6 months)
*****Now here's the reasoning for this ...................When the VA did the Nerve Sparing Prostatectomy, instead of leaving a short small neck from the bladder so the urethera could be attached correctly; their student doctors cut the neck flush with the bladder and then used what there was of the urethera from the bottom of the prostate to sutcher it back to the bottom of the bladder where in their notes, they commented on how it was so difficult to sutcher this tube back in place for normal bladder and urinary function. THEREFORE; the bladder sees this area every six months as a sore or wound and tried definitively to heal and close the wound which it is successful in doing so,
I'm being told now that the only fix that may be possible is to BYPASS THE NORMAL OUTPUT AREA and place a folley in and thru the abdomen attached to a bag and let the urine collect there and empty it regularly. WRONG!~ Not as long as I'm alive and able to walk. Having spent the first part of the week last week back into the ER to get roto rootered and having to wear a catheter for almost 5 days is not fun at all.
I have an appointment this week with my Urologist and we are to discuss the facets and ramifacation of where we go from here.
All I know is that I want a life that is going to give me free relief from surgery every 6 months.
Outside of this issue we're trying to move forward the best we can.
[Sadly, we received the following notification of Dennis' passing.]
Dennis George Peterson, formerly of Moline, Muscatine and Auburn, Wash., lost his seven-year battle with cancer and passed away on March 11, 2013, in York, S.C., where he had resided the last eight years.
Funeral services were conducted by Bratton Funeral Home, York.
He was born on July 15, 1945, to Carl W. Peterson and Mildred Banks Peterson. Dennis was an Air Force veteran. He enjoyed ham radio, karaoke and antique radio restoration most of his adult life.
He is survived by his sister, Carol M. (Carl) Jamison, Moline, and the love of his life, Eloise Faris.