September 21, 2010

Debbie:

I'm forwarding this to you, with a copy to Chuck, because you never respond to any of my E-mails, and you are cooperating with Indiana University Hospital in cutting off all communication between me and Linda.

As you can see, in five weeks, Linda will be losing her Blue Cross/Blue Shield primary coverage through Huntington Learning Center. I am doing what I can through our State Farm agent and the Medicare and social security disability people to look into getting alternative insurance coverage for her, as even my COBRA BC/BS, which until now has been Linda's secondary insurance, runs out next April, and according to Richard, she can't get on Medicare until November 1, 2011, so she will be altogether without insurance from May 1, 2011 through November 1, 2011 based on what I have been told up to now.

As you can see, we have five weeks to find a solution to this very complex insurance problem. Working through to the best answer is complicated immensely by the fact that neither you nor anyone at I U Hospital will talk to me, or let me talk to Linda about her insurance situation, or anything else. As you can imagine, Linda's continued care and treatment are in serious jeopardy now because Linda and I can't possible pay the millions of dollars her ongoing care and treatment will cost during the five months it appears she will be completely without insurance coverage of any kind.

Legally, solving this situation is up to you, who now holds Linda's sole health care power of attorney, and Richard, who holds her financial power of attorney. I'm not permitted to talk to her health care providers, or the I U Hospital social worker who could help get to a better answer on the Medicare and Social Security Disability issues, and you won't respond to my communications in any way. Obviously, I would like to help work out the best possible solution for Linda to this mess, but I can't do anything for her without the ability to communicate, at least through you, who see her every week and have more contact with her than anyone else.

I have no wish to be antagonistic, however, Linda's and my future financial security is now completely in your hands. If your failure to respond to this e-mail causes either of us any future financial losses, please be on notice that for my part I will hold you personally responsible for every penny.

I know that the staff at I U Hospital pressured you into putting yourself in the situation you are legally in now regarding this, and maybe you can prevail upon them to let me back into the communication loop so I can help find an answer to this problem. I know you are very angry with me about things that have happened, but we have to put that aside for now so we can help Linda solve this very serious problem which will affect her and me financially for the rest of our lives.

The next move is yours. I'm sure you clearly understand my position. I'm copying Dr. Tector and Cindy DeBord on this e-mail so they know what is going on. I will mail a copy to Michele J. Calderon Johns as well, for her file. I hope Richard will also pass this information along to his social worker contact at I U Hospital right away so she can get to work trying to come up with a solution. Unless you get back to me promptly with a phone call or an e-mail in response to this, there will be little more I can do to help. Again, I hate to be antagonistic, but I have to take every necessary measure to protect Linda and me from financial losses which will most likely follow should you choose not communicate back to me regarding this.

One thing you could do to protect yourself from financial liability, should you elect to do so, would be to resign as Linda's health care power of attorney. I would be happy to take back that responsibility from you, and of course that would also solve I U Hospital's communication blockade, as they would have to deal with me if I am her health care power of attorney. If you wish to take that way out of this mess, let me know right away and I'll draw up the papers for you and Linda to sign. If you send me a copy of the power you are holding now, I could get started on drafting those documents as soon as I receive what you have. The same way out of this mess offers itself to Richard if he wants not to be a part of the solution. I'm sure he will let me know what his preference is in that regard. As long as the two of you continue acting under the powers you hold, you are legally responsible for the outcome.

It's your move.

September 19, 2010

Chuck was not able to get a standby flight to Indianapolis today, so he didn’t get to see Linda at all this week. He did talk to Debbie a little bit, and this is what I have been able to learn:

Linda has been able to get out of her bed a few times and go for short walks up and down the hospital halls. However, most of the time her pleural effusions – the fluid that builds up on her lungs – are still large enough that she has to have mechanical assistance for breathing, and as has been true in past weeks, she is on and off the ventilator. Of course, she can only go walking in the halls when she is off the vent.

Chuck and I talked about a procedure called pleurodesis, where talc, or some drug, is injected into the space between the pleura – the membranes lining the chest cavity and covering the lungs – causing scar tissue to form and stick the membranes together, so there is no place for the fluid to build up and collapse Linda’s lungs. It’s a common procedure in cancer patients who have the same sort of fluid buildup Linda is having. Chuck talked to Debbie about pleurodesis for Linda. I had suggested to Dr. Tector that this be done two months ago. Our friend the respiratory therapist tells me that Dr. Tector had a spat some time ago with one of the pulmonologists, and won’t let them work on his unit any more. Debbie tells Chuck that now, the lung doctors think Linda is too weak to have the procedure, so once again Dr. Tector’s obstinacy and pigheadedness have caused delays which deprived Linda of a chance to control the pleural effusions and get better so she can come home.

Chuck is suggesting transferring Linda to a transplant center in Chicago, but none of the centers here will take her now because of how badly Tector has messed up her condition – they don’t want to be responsible for the effects of his many mistakes in her case. And of course, Dr. Tector would have to sign a discharge order for her to be transferred anywhere or Blue Cross/Blue Shield won’t pay her bills after she leaves Indianapolis. In a very real sense, then Linda is his prisoner until he decides to let her go or she dies in his hospital. It’s most unfair to her, but there is nothing more we can do except pray for her and hope for the best. I would like the chance to talk with the lung doctors and find out if they think Linda will ever get well enough for a pleurodesis procedure, but of course not a soul there will even speak to me, including Debbie. Linda must feel completely alone and abandoned down there, because they won’t even let me talk to her or write to her.

In case Debbie is still showing her these e-mails, I will include that the house and yard are in good shape, and ready for Linda to come home. I got rid of the tree service and the landscapers, and bought a lawn mower. I cut the grass twice a week, and it is green and growing now that we have had a good deal of rain this weekend, and I have trimmed the crab apple trees and the shrubbery back for fall. Everything looks neat and tidy. I have been doing all the chores Linda used to do, including the laundry and the daily trip to her post office box to get the mail, and the marketing a couple times every week. I’m trying to use up the canned goods in the pantry and the meat and vegetables in the freezer before I buy anything fresh except milk, eggs and bread. There is enough pasta sauce, pasta and canned soup to keep me going for another couple months before any major grocery shopping will be needed. I try to be inventive about what I cook for myself, both because it is a fun, and because it passes the time and gives me a little break from the terrible loneliness of living in our beautiful home without Linda here.

When I don’t get any news about Linda for a week at a time I have a lot of trouble sleeping, wondering if she may have taken a turn for the worse, whether she is hurting with nobody there to comfort her, and whether in fact Debbie or anyone at that awful hospital would even call me if she were dying. I suspect they will not. I haven’t heard from our friend the respiratory therapist at all this week, and I note that another respiratory therapist at I U Hospital who was a neighbor on my Facebook Farmville farm, who never ever took care of Linda or ever talked to either one of us, has taken herself off as my Farmville neighbor. Apparently I U Hospital is still actively on the warpath against anyone who might be a conduit to me of even the smallest tidbit of information about Linda or how she is doing. I just don’t understand how they can be so cruel.

Our friends Mark and Marcia were kind and generous enough to invite me to go stay at their house in Albuquerque for a while, but I am afraid to go that far away because if something bad does happen to Linda I am sure the hospital would not call me soon enough for me to get back from there to comfort her before she died. I’m not even sure they will call me at all until after she is either transferred or dies, and I doubt Debbie would tell me anything about such an event either until it was too late. Not knowing from day to day is tearing me up inside.

I don’t have anything else to report now.

September 13, 2010

Kelly:

I wish I could tell you how Linda is doing but I can't.    

On August 6 and 7, 2010, multiple instances of Linda’s IV antibiotics being spilled onto the floor of her room because of nursing errors in tubing connections, and multiple instances of clogging of her feeding tube because of inappropriate feeding product being prescribed for Linda, disputes arose between Linda and me and her doctors about her continued care.   Due to these disagreements, Linda’s doctors had me forcibly evicted from Indiana University Hospital on August 10, 2010. I am no longer permitted to visit her there, or to speak with Linda on the phone. Calls from my home and cell phone numbers to all I U Hospital numbers are blocked, and the caregivers and administrators at I U Hospital will communicate with me only through my Indiana lawyers.  Despite attempts by Linda, me and my attorneys to arrange for Linda’s transfer to RML Specialty Hospital in Hinsdale, Illinois for her continued rehabilitation treatment, and by the I U Hospital social worker, I U Hospital care planner and I U Hospital’s own attorneys to facilitate that transfer, the doctors at I U Hospital refuse to discharge Linda, and are holding her there in a “nondisclosure” room, where all communication between me and Linda is prohibited.  

I only know this much: she now has chest tubes in both her right and her left chest cavities. Fluid accumulation forces her back on mechanical breathing support just about every Friday. A respiratory therapist at I U Hospital who was kind enough to hand Linda an E-mail from me, because all other avenues of communication between us have been blocked, has been suspended with pay on the grounds she violated some alleged court order prohibiting contact between us, although as far as I am able to determine, no such order has been entered by any court whatsoever. The hospital's attorneys prepared a new health care power of attorney naming my sister in law Deborah Cetar as sole power of attorney for Linda, and forced Linda to sign it, so now they refuse to acknowledge that I even have any right to current information about Linda's condition or situation, and Debora, Linda's sister, refuses to communicate with me about what is going on.

In my entire life I have never heard of such inhumane treatment of a patient or a family member. The doctors asked me to leave the hospital grounds while they "interviewed" Linda about the incidents of spilled antibiotics and clogged feeding tube, and then they sent five armed guards outside to tell me I would be deemed a trespasser if I came back into the building. I went across the street to the student union and tried to call Linda's room so I could tell her they were not going to let me back in, because I didn’t want her to believe I had abandoned her there. I was told both Linda and her sister were "unavailable." When I asked just to be able to say goodbye to her, they routed my call to the security office and I was told I was no longer permitted to communicate with Linda in any way. Not wanting to leave her there without hearing from me what was happening, and wishing to retrieve my business laptop which was still in Linda's room, I went back into the hospital. As I approached her room the nurses were shouting at each other to close her door so I couldn't speak to her. I pushed the door open, packed up my computer, and told Linda I was being forcibly removed from the hospital.

Three security guards wrestled me up against the wall, and held me there until a city police officer cane to arrest me for trespassing. When the officer told the security guards he was just going to take me outside and write me a ticked, they contrived a story about how I had knocked a nurse down while pushing the door of Linda's room open, and insisted that I be arrested for battery and taken to jail. I was held in jail in Indianapolis for 30 hours until my brother could come and post a $150 cash bond. Since then I have not been allowed to see, speak to or get any information about Linda.

In addition, hospital supervisors have told the respiratory therapist that there is a domestic violence order of protection against me, which is a lie, and that Debbie has been appointed guardian for Linda, which is also a lie, as justification for her suspension for handing Linda the e-mail, which Linda had asked her to see and read. They dragged the respiratory therapist out of Linda's room before Linda could tell her what she wanted to say to me in response to the e-mail.

Now, all I know about how Linda is doing is what I can learn from friends of ours who are still permitted to visit her on the weekends from time to time. I don't know when she will be discharged, or what her condition will be when that happens. Unless I hear from a friend who has seen her, I really don't know from one day to the next whether she is dead or alive. Blue Cross/Blue Shield has made it clear to RML Specialty Hospital that if Linda were to leave Indiana University Hospital against medical advice, without a discharge order signed by Dr. Tector they would never pay for any care she received after she did so. So practically, if not legally, she is the prisoner of Dr. Tector until she dies or he decides to let her go.

I don't know what else to tell you.

September 13, 2010

Dear James,

I tried to reach you today and was unable to.  I wanted to see how Linda is doing and if you need any further information.  It’s been some time since I’ve been able to reach you and I’m concerned that you’re okay.  The best part of my day is hearing from my families and so I’m hoping you’ll send me a quick update.  We are a free service for families and so we’re only able to help so many families at one time.  If you’re no longer in need of help or care, please let me know so that I may close your file.

Warm regards,

Kelly Feterick

Eldercare Advisor

(877) 311-6102

kellyf@aplaceformom.com

www.aplaceformom.com

September 12, 2010

Well, Chuck was with Linda all day today in Indianapolis, and he called me from the Indianapolis airport to give me a report on what he learned. Linda still has a chest tube on the right, and tomorrow they are going to put one in on the left as well, as she had a reaccumulation of fluid on both sides Friday and had to go back on mechanical assistance with her breathing as a result.  She had been getting physical therapy three times a day at her own insistence last week, and maybe it was a bit much for her in her weakened condition. She won’t have any PT again until Tuesday. Chuck says the swelling in her arms and legs has gone away, except some localized swelling at her left elbow. She doesn’t have much pain except in her left shoulder which she broke in a fall at home in April. They are giving her Lidoderm patch pain medication for that. There’s nothing else they can do about the fractures in her shoulder until she is back on her feet.

Chuck says she is stronger, and that the physical therapist says she is making good progress. He gave her arm and leg massages, and he says she is gaining weight and her muscle density and circumferences are increasing. Linda did sign a new health care power of attorney for Debbie only, apparently at the request of RML to expedite her transfer there if Dr. Tector ever lets her go. There is no guardianship and no domestic violence order of protection. Debbie keeps a folder of my E-mails for Linda to read. Since that is the case, I completely don’t understand what all the fuss with our friend the respiratory therapist is all about.

Chuck did ask Linda to answer the four questions I sent down there with him, but he left the written answers in her room when his taxi arrived to take him to the airport. Maybe Debbie will be kind enough to favor me with a copy of Linda’s answers if she locates the sheet of paper in Linda’s room. Anyway, this is what he told me her answers were:

Do you want to come home? YES

Do you want me to be here for you when you come home?

Chuck says she cried when he read her this question, and she wouldn’t answer it one way or the other.

Do you want me to keep fighting to get you out of Indiana University Hospital? NO

Do you want me to call you in the evenings and read to you at bedtime like we used to do? NO

Chuck says Linda told him she wants me to take care of our home and have it ready for her when she is well enough to come back. Right now she says she wants to focus on getting better and stronger and well enough to come back to Chicago. Chuck says Debbie wants her closer to Chicago as well, but with all the complications with RML and BC/BS and their rules, that won’t happen until Dr. Tector signs a discharge order for Linda. So, I will honor Linda’s wishes and stop fighting to get her out of Indianapolis, and just wait for her to get well enough to come back to a place nearer to our home.

No one will say anything about how long they think that may take. According to what Chuck said, it would be several weeks or several more months. I don’t really know what I’m going to do with myself during such an extended separation from Linda. I hope the friends who do visit her, including Debbie, will give me updates about her condition and situation every day or two so I will at least know how she is coming along. Otherwise I won’t be able to keep the rest of you in the loop at all.

There’s nothing else to report today.

September 11, 2010

Dr. A. Joseph Tector

Indiana University Hospital

550 North University Boulevard

Indianapolis, Indiana 46202

            Re: Linda

Dear Dr. Tector:

            O.K. You win. It is very clear to me now that no matter what I do or say, you and Indiana University Hospital are never going to let me speak with my wife again.

            Linda is yours now. If she dies, it will be your fault. If she stops loving me, it will be your fault. Rest assured that in either event, I will spend the rest of my life using all legal and political remedies available to make sure you and Clarian pay dearly for the consequences.

            I hope you send her home to me soon, healthy and still loving me. If she becomes terminal while in your care, I hope you have the human decency to get in touch with me, and let me back in to comfort her in the last hours of her life.

September 10, 2010

Well, the lies continue to build up. This afternoon I was told by hospital security at IU that they were told by their legal department that there is a new health care power of attorney signed by Linda giving Debbie sole power and excluding me, and that they will no longer communicate with me in any way. Yesterday, Debbie told Chuck that the only document she has is the same one she has had in her purse all along naming us both. Someone is lying. I asked the hospital to fax me a copy of the alleged new document, and I have received nothing from them. At this point I tend to believe that it is Debbie that is telling the truth, and that the hospital continues to make things up just to stall the day when Linda comes home and tells me all the horrible things they have done to her since they threw me out.

Anyway, if Debbie is telling the truth to Chuck, and she is giving Linda copies of all these E-mails, at least Linda will know what is going on, and that I still love her and am fighting for her as best as I can. I guess they are never going to let me talk to her again until she gets well and walks out of there on her own two feet. I only hope she is seeing these letters and knows I want her back in my life and for me to be back in hers. I know how lonely this forced separation is making me, and it must be even worse for her, if she still loves me, since she is the one who is sick and in pain.

Today the social worker Nancy told Richard that Linda is back on the ventilator and unable to speak. I think Chuck plans to go down there and visit Linda over the weekend, but I’m not sure. I hope he can get Linda to answer the four questions I sent along with him, so I know what the future holds for us. If Linda tells me she wants me out of her life, I guess I will just have to start making plans to go on without her, but that is sure not what I want for us. I want her to get well and come home and go on as we were before her transplant, even if that means I stay home to care for her for the rest of her life. That would be better for me than living without her.

Nancy told Richard they were going to do another bronchoscopy on Linda today, probably to try lung lavage to seeing whether they can suck out any of the built up mucous which keeps causing her lung to collapse so fluid can build up in her chest cavity. Every time Linda goes through this cycle of being off and back on the ventilator the risk increases that she will become dependent on the vent for the rest of her life. I hope that doesn’t happen, but if she has to come home on a ventilator, I will be here to care for her forever unless she tells me to get out of her life. I’m never ever going to believe that is what she wants until I hear it from her.

I can’t give enough thanks to Chuck and Richard for everything they are doing to help us get through this. I can’t give enough thanks to the rest of you who listen to the tale of woe and pass along your encouragement for me to keep fighting for the one I love best of all. Debbie tells Chuck Linda is getting physical therapy three times every day, and is making progress, though I don’t know how much progress she can be making if she is on and then off the ventilator a couple times every week. It’s hard to build up your strength when you can’t breathe. No one will tell me what Linda’s situation is with nutrition and weight gain or loss, or how she has been affected by the repeated infections that she suffered in that awful place. Every time she seems to be improving, something else goes wrong. It’s just not fair.

Our friend the respiratory therapist is still suspended for handing my e-mail to Linda, though I don’t understand how the hospital can do that since there was no order in place for her to violate when she did it, and Linda did ask for the letter from her. I guess it’s just part of their plan to cut off all communication between me and Linda no matter who gets hurt in the process or how many lies they have to tell to keep us apart. How people like that can even call themselves professionals is astonishing to me. I can’t imagine how anyone could think such lying and conniving can be helpful to a sick, hurting, lonely woman who needs all the emotional support and love she can get if she is ever going to recover from all the harm they have done to her.