Dana and Billy

Most disturbing
Of all the things I've been reading here about recent hospital experiences, I find this bit of info the most disturbing of all, that a physician would instruct his patient not to disclose information that could be of vital importance to others who are dying from this disease. I can't think of one good reason why a doctor would do this, and not even have the courtesy to explain to the patient why.

I'm sorry to question this here. But the information shared on this board has become vital to me and others. Let's not play games.

That said, Susie and Brendon, I hurt for you. I, along with the others who have been following your story, had such high hopes and were stunned by your bad news.

I did not have the good fortune of having surgery either, and I can tell you I am doing well, and, hopefully Brendan will too, after you've put this disappointment behind you.

Lu

Barb, thank you.
I'm sorry it took so long for me to reply. I'm still struggling with "time." At Presby, it was a 24/7 job, when we were released to Shadyside, the vigil continued. Every cough or movement my husband would make would have me up and asking, "Are you OK?" I'm sure he would have been better if I'd have let him sleep and with the added complication of his feeding, going on overnight and his weakness, if he needed to get up-I would either have to drag that thing into the bathroom or disconnect it.

Once home, the 24/7 continued and yesterday I had to go back to work. I very much understand how you feel, as I had come to terms with whatever the Lord's will be-and knew full well that His will might be to take my husband at that time. In talking with alot of the families at Presby who were in it for a longer haul, due to transplant surgies, our observations were all the same. Had I not been in what I felt like was a sinking boat, I would have gathered them all together and asked for a meet with a hospital administrator as I had done initially which produced a positive change. I regret not organizing the group and communicating our feelings and observations. If you don't say something, then you become a part of the problem.

I told the Lord I wouldn't resent Him or be mad, but didn't know if I could be an effective servant for Him, as I imagined myself despondant without my husband. I'm 45 and have been with my husband for 25 years. He is my best friend and I just couldn't imagine life without him. I also understood on a deeper level that if He did take my husband, he had something in mind for him or myself that couldn't be accomplished with us together anymore. I wasn't happy in knowing that, but also knew that my puny mind couldn't come close to the "why" but that one day, either here or in the heavenlies, that I would have a full understanding and would see him again, even if he died.

I'm grateful to have my husband and we have a long ways to go before he becomes a semblance of his former self. And when I shared my story, I wanted to specifically alert people to the fact that if you don't want someone training on you- that you must ask beforehand and to be alert and observe the nursing staff closely before you leave your loved one in their capable hands. There were some nurses that I did get to know, which allowed me a few hours "off-campus" to do laundry and snooze while waiting for the dryer to stop and some where I was afraid to leave to even use the bathroom. But every hospital has issues. I firmly believe that when you run a business of any type, you need to provide the necessary tools to accomplish tasks effectively (more nursing personnel), you need to provide employees with decent wages, retirement plans and medical-and when you have done all these things, you must enforce a standard and code of ethics. Too many people everywhere seem reluctant to challenge any of this... It's easier to look away, especially if you're bottom line revenue is high.

Not only are the nurses understaffed, they also receive no type of pension-which does little to attract star employees. And I can also say that I believe that top leadership is lacking as a whole and that more teambuilding need be done. I thought I was also the only one who happened to be at the wrong place and wrong time, listening to nurses in public areas, such as elevators, discussing their drinking exploits the night before and bashing patients. Although these nurses were not treating my husband, they were treating somebodys. Another family made this comment to me regarding the same thing, and it was absolutely unsolicited. One day, the revolving door was stuck and we were waiting for security to activate the door. An elderly lady elected to go in thru security where a security officer demanded she open her purse prior to entering. She returned to where we were waiting and told me that she would not submit to that-that she had been a faithful volunteer at that hospital for twenty some years and had watched it-unfortunately-go downhill as far as patient care and ethics when this "new bunch of young people took over."

I still intend to write a well meaning letter explaining my observations and I hope it helps. Susie and Brendon are for real, a part of my family now. As Susie said in her post, her doctor asked her not to post any information and I do believe it was meant to protect her. Her doctor has a plan for Brendon's recovery and eventual surgery, but people who arn't medically trained may disagree. Susie needs to stick with the plan and advice of her doctor and get Brendon well. Some folks may have other opinions.. I know at the hospital, when I was sleeping next to Billy's bed and the curtain was drawn, I overheard one of the nurses say, "I've never seen anyone come out of one of those beds alive..." I refused to take that comment in.. I feel like her doc wants to spare her from anything that contradicts his eventual total recovery. They sentenced my husband to death, but GLory be to God, the sentencers are not in charge. At this point, I believe that Brendon has a rough road to hoe but will make it and return to have his surgery at a later date. Please, don't anyone fault her for it. She is respecting the request of her surgeon and they both need him now and it would be counterproductive for her to refuse his request.
I thank you for your kind words. Your story and Maria's (VIC123), have hit home so closely for me, it brings me to tears for I am you-but my husband was spared for TODAY. I just so know that feeling where the death of the person closest to you is looming. I told a friend of mine, the only way I could describe it was "numb despair." I was past crying. I returned to Shadyside one evening and sat on the edge of the bed. I didn't want to sit or be there, I didn't want to watch TV or eat-in short-I felt like I just didn't want to exist.

God does have a wonderful plan for you and your husband. Lord knows what he's doing right now. You can take comfort in the fact that where he is, he is no longer bothered by anything or even worried about you because he has seen the big picture and has been in His presence and knows that even though you grieve, you will be OK and reunited with him. There is a show called "I Survived Beyond & Back" that airs on Biography. Although, these true stories come from varied peoples, rich/poor, black/white, educated/uneducated, believers/non-believers, young/old...they all had a few things in common as it relates to their experience...1. They were in the presence of the Lord and could not mistake it for anything else 2. They were greeted by loved ones and 3. They did not want to come back into their bodies-they considered them burdens and the presence of the Lord was so much a pure love and being bathed in it-they were upset at the prospect of returning and were dissapointed when they woke up inside their flesh shell. Watch some of those episodes if you can, they are all true stories, with some folks being dead a few minutes and some up to periods of 40-90 minutes.

I know you love and miss him-but he is somewhere that the petty concerns of our daily lives have no meaning and he sits beneath the shadow of His wing. He's happy and suffers not at all like we do. We are childlike in our knowledge of what awaits us-but your husband does await you and what might seem like forever here on earth, especially without your loved one, is probably fleeting in the heavenlies. I will pray and lift your heavy heart up unto the Lord. oxoxoxo