What is Real Care? Who is the right Doctor? Where's my record of Surgery?

lion1

After talking to my wife tonight something hit me like a ton of bricks. It bothered me more than ever before. I am speaking of the care I have received or the lack of it. As I head to my third Doctor tomorrow in Jacksonville Florida, I am hoping that not only I get the care I deserve but the attention I deserve as an individual. And yes I know those Doctors are out there.

Back in Jan 10 I had a Botox injection for my 4 year bout with incontinence, I was told by the Doctor to contact him on my progress and the effect it had on me within 6 weeks. With Botox being experimental for the bladder no doubt my Doctor would be really interested on if the procedure was effective based on units injected and locations given. I was wrong and probably more so, wrong about having the right Doctor. So many times we want to believe we're in good and caring hands, but maybe we're not. Maybe we hope for the best sometimes and it just doesn't happen. We want to believe but sometimes it takes someone else like your spouse to make you see the light.

After several emails directly to the doctor as directed, he never responded. After calling his staff for three months, and the promises made that they would have him call me, he never did. After promises that supplies would be sent to me for the last two months, they never were.

And to make matters worse and terribly concerning after requesting my records for the last three months to take to my new Doctor, there are no records of the surgery in the computer and no where to be found.

My wife told me tonight, why would a doctor or a staff not call after I called so many times to ask how I was doing and if I had any complications from the surgery. ZERO! ZERO! ZERO! I AM SO DISAPPOINTED IN THE NON RESPONSE! I have wasted practically another year being incontinent and I could confidently say this is and was poor medical care and noone gave a damn after I left that hospital.

Think about it, wouldn't someone want to know if the botox worked and what steps were needed next. This clearly shows that I was treated like a number. I hope my new Doctor tomorrow is the right one who will be interested in my welfare days and months after he treats me.

On that note How do I really no what was injected in my body, maybe it was just Saline---I'll never know. Because there's no record.

Be certain of this we all deserve better, and yes my Congressman will be hearing all about this. Just what another Military Hospital needs. But they dropped the ball.

If I had gotten sick by this treatment, the lawyers would already be knocking on the door. I don't want to think about what could have happened to me and noone was even interested in asking.


I think this message is extremely important and we as Cancer Survivors and sufferers cannot let this go unnoticed.

I was so optimistic about my past care and confident in my medical support.

NOW I HAVE TO START ALL OVER!!!

LION1

Skid Row Tom

Looking out for #1
This is REALLY upsetting, but I guess misery loves company. I had a radical prostatectomy at "one of the nation's leading hospitals". The doctor had a wonderful personality and communicated with me regularly. He said he wanted to be "my doctor for life" and I had complete trust and confidence in him. I felt I was in good hands and my immediate recovery was positive and swift. However, scar tissue developed and he had to perform a dilation. After that procedure, I developed total incontinence (i.e., no bladder control). As the months wore on, it was obvious I was also experiencing ED (his only help in this area was a prescription for Cialis and to "following the instructions on the label" -- "Take one before sex"). Six months after surgery, I went to a local urologist who ordered a series of tests and performed a cystoscopy. He discovered I had bladder cancer. When I called my original doctor at the "leading hospital" and asked for advice on how best to handle incontinence and bladder cancer, his response was, "You're really screwed". Seriously, that's what he said. I haven't heard anything from him since. I guess I am a pariah -- one of his patients where things went wrong so he just wants me to go away. Since then, BCG treatments have dissolved the tumors in my bladder and I have an AUS for incontinence. I like my current (local) urologist, BUT..... I have records and printouts of every visit to the hospital and doctors' offices since this ordeal began, and I quickly came to the realization that the ONLY person I can trust, have confidence in, and rely on is my wife. As pro wrestler Steve Austin used to say, "Don't trust anybody." Lion1, I hope our experiences are the exception, because this whole cancer thing is difficult enough without the baggage of dealing with uncaring individuals and institutions that are apathetic, unreliable, and can't be trusted. The sense of abandonment, especially by those you trusted, is crushing.

lion1

Skid Row Tom said:

Looking out for #1
This is REALLY upsetting, but I guess misery loves company. I had a radical prostatectomy at "one of the nation's leading hospitals". The doctor had a wonderful personality and communicated with me regularly. He said he wanted to be "my doctor for life" and I had complete trust and confidence in him. I felt I was in good hands and my immediate recovery was positive and swift. However, scar tissue developed and he had to perform a dilation. After that procedure, I developed total incontinence (i.e., no bladder control). As the months wore on, it was obvious I was also experiencing ED (his only help in this area was a prescription for Cialis and to "following the instructions on the label" -- "Take one before sex"). Six months after surgery, I went to a local urologist who ordered a series of tests and performed a cystoscopy. He discovered I had bladder cancer. When I called my original doctor at the "leading hospital" and asked for advice on how best to handle incontinence and bladder cancer, his response was, "You're really screwed". Seriously, that's what he said. I haven't heard anything from him since. I guess I am a pariah -- one of his patients where things went wrong so he just wants me to go away. Since then, BCG treatments have dissolved the tumors in my bladder and I have an AUS for incontinence. I like my current (local) urologist, BUT..... I have records and printouts of every visit to the hospital and doctors' offices since this ordeal began, and I quickly came to the realization that the ONLY person I can trust, have confidence in, and rely on is my wife. As pro wrestler Steve Austin used to say, "Don't trust anybody." Lion1, I hope our experiences are the exception, because this whole cancer thing is difficult enough without the baggage of dealing with uncaring individuals and institutions that are apathetic, unreliable, and can't be trusted. The sense of abandonment, especially by those you trusted, is crushing.

Keeping the right Frame on mind
Tom,

Thanks for your support and kind words and sharing what I'm sure many out there have endured and continue to endure. I wish you the best and respect your perserverance and strength. Somehow the only way to make it through is keeping your mind in the right place----God knows there are forces trying to displace it.

My best to you..... I'll let you know what happens in the coming months.


Lion1