It's been a while....: Everyone here has been so... - NRAS

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It's been a while....

Nitrobunny profile image
12 Replies

Everyone here has been so incredibly kind and wonderful. You have all been in my thoughts and prayers. It's been a while since I've been around and there's a reason why.

Just after Christmas our lives were changed forever when a CT scan revealed a mass in my husband's left kidney. Having been a cancer survivor myself, I took the lead and we embarked on a journey to get him the best care possible. We hired the absolute best doctor we could find to do a laparoscopic partial nephrectomy with the DiVinci robot, a 5 hour surgery in one if the most famous cancer institutes in the world. If it were only that simple.

The following day I watched my husbands blood pressure drop and his heart rate skyrocket for hours while the nursing staff failed to act in a professional manner. I was screaming at them to do something. My husband had a GP drain that filled every 15 minutes instead of hours. One mistake after another, blood viles mislabeled. No urology docs in the hospital that night. I finally ran the surgeon down on the phone as I got ahold of someone in ICU who finally gave him the attention his condition deserved. They ran him down to surgery to removed the repaired kidney as it was suspect for the bleeding. It turned out that his spleen had been lacerated. He lost the repaired kidney, adrenal gland and spleen. Anesthesia revived him twice before the surgery with 15 units of blood. It was pure hell. I had no voice for days because I had yelled so much. It was horrific and surreal. I could not believe no one one the floor could see what was happening as they were paging doctors who were not there. When it was all said and done there were no apologies. Only doctors who had the nerve to tell my husband how fortunate he was to survive. That infuriated us and we let it be known. White coats were met with F bombs and character assassinations until he was discharged on the 1st of this month.

We are home now and he's recovering at an amazing rate considering the situation. He's not going to be well in time to race (ski) anymore this season but thank God, he will ski next season. I flared like mad from the stress of it all but it's nothing compared to what my sweet handsome man just went through.

So it's been a while, but I'm back and I hope and pray all of you are well.

Best~

S

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Nitrobunny profile image
Nitrobunny
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12 Replies
Etostar profile image
Etostar

Wow, I am stunned on which I just read in you sharing on you and your husbands ordeal. My heart goes out to your husband having been diagnose with cancer, which is such an ordeal in its self but he had to suffered through such adroucious, incompetent medical care in which you sought out, is amazing to me. I am so glad to hear he is looking forward to next year's skiing trip! Much blessing for complete recovery and joy and happiness! Ooooxxx

Thankfully he was was blessed with such a faithful wife as you.

Esther

Utterly speachless at you and your husbands ordeal.

Sending you my love

Sue

Gigi71 profile image
Gigi71

OMG ! What an ordeal, words can't really express the horror, reading what you both went trough, let alone knowing that can happen in this day and age. How do they get away with it. On the positive side, its so good to hear he is recovering, and blessed to have each other. Sending hugs to you both. G xxx

nomoreheels profile image
nomoreheels

What an ordeal you've both been through. Thank goodness you had your wits about you to speak with the Surgeon otherwise it could have been a very different situation, it doesn't bear thinking about.

I don't know if you have a resource similar to our Patient Relations over there (not PALS)? I think your husband's dreadful experience certainly needs to be addressed round a table face to face with those who failed to recognise each symptom of your husband's decline, even including those responsible for labelling vials incorrectly which whilst it may seem basic really should not be able to happen.

We use the term medical negligence all too readily nowadays but how are they to put in place revised guidelines or fail-safe methods to prevent the more critical if they're not addressed. The hospital's Patient Relations Service will guide you & you can choose to meet with those concerned either informally or formally. Doing this helped ease my h's concerns & the reason for the meeting with those doctors concerned has now been implemented so hopefully this means nobody else has to have the same experience.

Thankfully your husband is now doing well. I shudder to think how many others who place their faith in those in white coats were told that it was just one of those things, that the body just shut down. x

Kate23 profile image
Kate23

My word I was practically holding my breath as I read your post, horrendous but Thank goodness he had you in his corner!....He is one lucky man, hope he goes from strength to strength and you regain some calm and tranquility.xx

I can only try to imagine the horror of what you both went through. I hope your husband makes a speedy and trouble free recovery and you feel better soon. x

Wow Nitrobunny - I have read so many things saying NOT to leave your loved ones in the hospital buy themselves, and you have reinforced why. Bless you for acting on his behalf and I am SO happy that it worked and he is getting better. You are truly a wonderful example for the rest of us...

Richgirl profile image
Richgirl

Wow, what a horrific ordeal you & your husband went through. I'm so sorry that happened. Proud of you & the way u got right up in there faces. I'm very very happy to know that he's home doing well. Nomoreheals said everything. Great support. Sending you bunches of love & healings.🌻

CloudTreeDrive13 profile image
CloudTreeDrive13

Please tell me you are going to put in a formal complaint to ALL those involved. They should be struck off and never to practise again. Absolutely disgusting. No human being should be treated that way. Take care xxxx

Nitrobunny profile image
Nitrobunny in reply to CloudTreeDrive13

Yes indeed, I have already started the process. Despite the intensity of the fray I managed to keep notes. (I kept his vitals and noted all my encounters) and photographs. I honestly did not know what the outcome was going to be but I wasn't going to go quietly regardless of the outcome. I simply could not believe what was happening and not happening in front of my eyes. The hospital's leadership contacted me nearly a week after I sent them photographs of my husband literally bleeding in his hospital bed to inquire as to what happened. I was dumbfounded again at the delay.

Nickijk73 profile image
Nickijk73

Omg - you couldn't get a scarier thing to start a flare,surely?! I'm so glad that your husband is finally on the road to recovery,but I can't believe the hell you've been through to get to this stage. Thank god for you fighting his corner,it's at times like this that we find strength that we never knew we had. Hopefully now your flare will start to recede,and you can both enjoy recuperating together.

I wish you both all the very best,and welcome back.

Nicki x

Nitrobunny profile image
Nitrobunny

Thank you one and all for your kind words. My husband is now two weeks post op the second surgery and doing incredibly well. My docs did a great job of managing me through the crisis. They checked on me daily to make sure I was well and offered lots of help even with referrals of other doctors who helped my husband. My pain doctor consulted and put him on an epidural so he didn't have to rely on opiates that would have interfered with his recovery. It was a brilliant move that really sped up his recovey. I've been on antibiotics to help negate all the nasties that live in the hospital because what was to be two days turned out to be ten. I have a sinus infection and I'm already on the backside of the flare so with a few more days rest I will be in good shape. My husband returns to work next week and is already doing some administrative tasks from home. Things are coming around and getting back to normal but I guarantee no one is ever the same after an experience like that and I'm going to do my best to make sure it doesn't happen again to another person. I can only do so much but I definitely do all I can.

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