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I am so hoping that this site will give me an anchor, be a support, offer a haven for all my difficult feelings.  I am a 60 year old woman presently taking care of my 45 year old husband.  It has been 2.5 years now, with no end in sight.  I love him dearly, my “boy toy” of 23 years, my “Prince Charming” who came into my life when everything was crashing down around me and I lost everything I ever worked for and everyone I loved.  The exciting lover I had always yearned for, the Best Friend I had never had.  But for the last few years he really hasn't been “there”, and although I know he's right in the next room, I miss him sooooooo.
In April of 2012 my husband had surgery to repair his penis.  In response to our question as to whether this surgery could harm my husband's sexual functioning, the doctor's response was “This will be a breeze.”  (wink wink)  And despite last minute misgivings due to unanticipated events and behaviors on the surgeon's part, we took the plunge and he went in for the surgery.
He was rushed out of the hospital less than 24 hours after this major task b/c apparently the hospital had the wrong insurance coverage in their records (this, despite repeated phone calls and paperwork spelling it all out).  They thought he had STATE coverage, and the STATE said they wouldn't pay for my husband to stay beyond 23 hours!!!
Less than 3 hours after arriving home I made my first distressed phone call to the surgeon.  I was told he was “unavailable”.  The covering doctor said the fever was due to after-surgery lung issues and that if my husband exercised his lungs with the given apparatus everything would be fine.  Well, they weren't, and they only got worse.
For the next five days I called with complaints of broken blisters at the surgical site ( his penis), “copious bloody discharge”, excruciating pain, fever.  Each and every time I was told the doctor was “unavailable”.  Each and every time I was told “this was to be expected.”  Visiting nurses were not only NOT assigned, the doctor's office refused to do so; refused to authorize antibiotics; refused to authorize BANDAGES;  refused to give him an emergency appointment.  And where was the doctor through all this?...”unavailable”.
Finally, my husband got on the phone himself and BEGGED  the receptionist to PLEASE PLEASE get him in TODAY.  I cannot express the anguish I felt hearing my big strong man crying and begging.  The receptionist showed bravery in defying the nursing staff and gave him an appointment.  For all intents and purposes our car wasn't drivable, so a friend put us in her car for the one hour drive. 
As soon as the doctor saw the condition of my husband's penis (oozing pus and blood and practically unidentifiable as the appendage it was) he said that hubby would have to go back in to the hospital on IV antibiotics.  Put on sterile gloves.  Took a swab.  Then back tracked and said that hubby could go HOME with oral antibiotics and “...let's see what happens...”  That's when I chimed in and said:  HE IS NOT COMING HOME.  The doctor visibly jerked at that, then said he would make arrangements for hubby to be received in the main hospital immediately.  So my friend got him to the main hospital, where we had to drop him off b/c she had to get home to her kids and I had no other way of getting home.  We believed he would be given a room immediately and be cared for.
Well, he wasn't.
Hospital staff ignored him for the next 4 hours.  Finally gave him a room which had no shower facilities, no phone, junk piled up in the corner.  Ignored him for the next 2 hours with NO FOOD, NO WATER,  NO PAIN MEDS, NO ANTIBIOTICS.  I called the doctor, who, I was told yet again, was “unavailable”.  I begged the covering doctor to PLEASE PLEASE take care of my husband, he's not in his right mind from the pain.  Response:  “If he leaves it will be AMA.”  Well, 2 hours after that call hubby left the hospital, and got home by calling a cab and paying for it with our electric bill money.  After getting home he got in to our unsafe not really drivable car and brought himself to the local small hospital.  Within an hour and a half they had him in isolation and would only tend to him with haz-mat suits on.  He not only had penile MRSA, he was septic. 
His surgeon was...you guessed it...”unavailable”.
My husband called that doctor time after time from that hospital, leaving heart rending messages:  “Please do not abandon me.” 
Nothing.
Even the staff at the current hospital could only reach that doctor once.  And he had a million reasons why he couldn't come.
After he was discharged he had to go back to the original hospital for tests to see what effects the surgery had had on the functioning of his penis.  It was mutilated.  It no longer worked in any capacity.  When he got home we called his insurance carrier who said “You are not to go back to that provider.”  Out of state doctors were recommended.  Hubby was seen within two days of the new hospital seeing his original records by the head of urology.  As far as we know, that hospital has the only viable record of what happened to my husband.  The original hospital quickly made all his records disappear.  No x-rays.  No test results.  No operative report.   However, my black male husband who had a failed urethroplasty IS documented as being a WHITE FEMALE WITH A POST C-SECTION INFECTION.
I have since learned that the surgeon who did this to my husband has done this to other men.
I also learned that he left this state and moved 3 states away.
And NO, we cannot get a lawyer to take the case.  Despite documentary proof in our possession.  Despite audio recordings of the doctor openly admitting crucial mistakes.  Vermont is a very “old boy's club” closed legal system, and NO ONE will go against the largest most influential hospital in the state or the state itself.
The state of Vermont took away my husband's private insurance, which we were up to date with on premium payments, and for which we took responsibility for any and all co-pays.  They said “You're too poor to have this insurance.”  And yes, I have that recorded also.
And so once they took away his private insurance it became a struggle just to get the medical supplies he needed to stay alive and to get the rides necessary to get to the one doctor within driving distance who had the knowledge to oversee his care and keep him alive.  You see, he was so mutilated, rendered so broken, there isn't one urologist in all of Vermont who can even figure out what was done to hubby in the first place.
This is just Part One.  I will write Part Two tomorrow.
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Welcome Anniem:

 

It is good that you have come here to share your experience. I am so sorry that you and your DH are going through this ordeal and for so long… I cannot imagine the physical and emotional pain you have both been going through.

 

It is not easy to watch a loved one go through such a drastic health condition when they are so young and its so unexpected – and, it sounds, so unnecessarily. It can turn your world topsy-turvy. It sounds as if you are documenting everything very well. Are you journaling as well?  It is important to get your feelings out! In the meantime, have you been able to take some time out? I am afraid that this may be so stressful that it may be affecting your health also. I hope you are putting yourself first!

 

Just know we will be here for you during this time. Remember to keep the faith and, when it all seems too much; take time out to think good thoughts and just breathe.

 

Hugs, Glenda

Hello Anniem:

 

Welcome... I am truly sorry to hear of the tragic experience with your husband's surgery. Truthfully, I have heard 1000's of negligence tales of horror from so many caregivers over the years. It really isn't necessary to continue in such graphic depth.. we totally understand and so many of us can relate to both your experiences.So, please do not post all the graphic details.

 

One question that comes to mind since you only briefly state that his penis needed to be repaired. Was this for cosmetic reasons or what? It seems that you both had a choice and that it wasn't a necessary option to have surgery. It sounds as if it was elective.

 

I would save the documentation if there is anything you can do legally such as go to the American Medical Association and file complaints against the doctor even though he was moved a few states away.

 

You might also use your documentation to contact senate and house members in your state,  and in Wash DC. your state health insurance division, your local legislators, local television news that investigates consumer fraud problems, the state prosecutor, attorney general and more to rally with how your insurance was denied and canceled, all the missing records and reports, etc if you have enough records for them to begin investigating. I would write one solid report and submit a copy to as many people in these areas I am suggesting. This might assist you in moving forward and having proper action taken.  This is what comes to mind so I am writing it all down.

 

I know in NYS their is pro bono legal counsel to the poor so you might want to check this out with the state bar association.

 

I hope that some of this can assist you.

 

Please remember we are here to support you... and it is important for you to be present in the moment now and plan action for the future. To keep repeating the history is an opportunity for you to vent but it keeps you from focusing on how to move forward... maybe even with alternative healing methods, energy healing for both you and your husband, distant healings etc. It may sound far out but many, many many people are turning in this direction when the medical world has failed them, because of the improper care they receive and they are getting positive results.

 

Glenda has suggested that your journal all your anger, fears etc and this can be very cathartic for you. To continue, both you and hubby need to balance your emotions. He cannot begin to heal with all the devastation that he has experienced and this is important for both of you... I hope you understand what I am saying.

 

My thoughts and prayers are with you both,

 

richest blessings

 

Gail

Last edited by GRM4LOVE

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