Hello, everyone. You might have heard of my fight for medical advocacy, medical transparency, patients' rights, and my proposed Medical Facts mural project in Washington, DC. Check here for updates, look for me on Facebook, spread the word, fight the fight; we will never give up!
Bellow is my first letter of advocacy on April 29, 2009 sent to 1,000 people by email (hospital names where we stayed have been removed :
Dear Friends and Fellow Fighters,
The following is our horrible account of Fred's health care prior to
+++ and while admitted to that hospital. If you think there is no way you can help me in getting +++ to change their policies or fix a very broken health care system, do not read any further. Please do not talk to Fred about this as he does not wish to relive the experiences of the past few months.
The following is our horrible account of Fred's health care prior to
I am asking for your help. If I have emailed you, You are either a fighter or placed in a situation where I think you could help. I will be writing the physician's board about this, but I am afraid that path may be far to slow to effect real change. I have been told by a very lovely lawyer that you can't have a mal-practice case when you have Kidney cancer because delayed diagnosis doesn't work in this case as you are going to die with this type of cancer. I really appreciate a straight shooter like that. I also did not mention any names in this brief as I do not wish to be accused of slander.
Back in January, Fred started complaining of rib pain. He went to **** for X-Rays. He had a broken rib..from coughing. We got pain meds from his primary care physician. In Feb. severe back pain began. We got more pain meds, muscle relaxants, and laxatives. The pain did not stop we got more pain meds and more laxatives. We went to +++ for more X-rays in March. We were sent home with more pain meds. I went to the next appoint and told the Doctor I was concerned about his kidneys. She said it could not be his kidney's as he had back pain. I demanded an MRI. We got an MRI to check for a pinched nerve. There was a shadow on the MRI. The primary care Doctor scheduled an appointment with an oncologist for the next morning.
Most of you are aware of the very bad news we received on March 27th. My husband was told he had 9 cm malignant tumor in his Kidney that had metastasized throughout his body. He was told this by his oncologist while alone. I rushed to the hospital. Fred was in despair.
I spent the next several days trying to get a straight answer from the Oncologist /Internist. I was not given prognosis or diagnosis for days. I researched this cancer by myself on the Internet. I went to the websites of cutting edge hospitals. I kept getting the same answer. The way Fred's doctors were describing this cancer it was metastatic renal cell carcinoma in other words: Kidney Cancer Stage IV. This disease has a 5% survival rate at this stage. The doctors would not tell me how long we had. When I pressed them by saying, "Would 2 weeks to 5 years be reasonable?" The internest said yes.
The oncologist in charge of my husband went away for a long weekend and was not available for days afterward. The oncologist seemed to avoid me when I got back. He did not return my calls. He even complained to my husband that "if little Miss A-type personality wants to talk to me she she come talk to me herself." This comment made Fred anxious. He thought if we made waves the care would get even worse. The oncologist routinely referred to me as the "wife." He never called me by name. He rarely made eye-contact. He would spend only minutes with me or my husband. The internist seemed to being trying to make up for this lack by calling every hospital he could to find someone willing to do surgery on Fred. He said he spent an "hour and a half calling NIH, John Hopkins, and Washington Hospital Center." He told me he was taking this case PERSONALY. He said he saw himself in my husband. They were the same age. They both had two kids. The youngest was three. I began to worry that the internist had lost all objectivity in the case.
On the nursing front, Fred's bedding was not changed for three days untill I changed it. Fred was admitted in a wheel chair. He could barely walk. They provided no walker the entire time we there. He was told to lean/put all his weight on his rolling IV tower (This is against Fall prevention guidline at most hospitals.) I helped Fred to the bathroom untill Fred could no longer walk. I did my best to change him with no training from the nursing staff when he became bed-ridden. I bought Desitin to help with the result of infrequent changes of bedding.
I mentioned my concern about needing a way to urinate.(A distended Blader was mentioned on the MRI of 3/25/09, the Bone scan of 3/28/09, on nurses notes on 4-10-09. The radialogist that saw Fred on 4-10-09 said the bladder was dangerously distended. She said she would call the oncologist. A nurse tried to do a Folley and was unable due to lack of experience. A urologist did not come till the next day 4-11-09. His report said he would come back to check on Folley. He never came back. In the four weeks we only saw th urologist twice.
We went to 10 off site radiation sessions. We were never told before beginning radiation that we would need ambulance transport. The first transport the ambulance shoved Fred's metastised hip causing extreme pain. On the third or fourth transport the tech droped his side of the gurney. The tech was fired. Fred was moved 20 times from bed to gurney with a pathologic break to the hip.
They kept telling us they were trying to line up surgery. The first thing you need to do in Kidney cancer is remove the Kidney. On Saturday morning 4-18-09 The oncologist came in our room. He told us he was going to send us home. It would be pallative care from now on. This is called being sent home to home hospice. He stayed about 3 minutes with us. Fred and I cried. Fred told me now could start making waves.
I had to wait till Monday due to the fact you can't get anything done in hospitals on a weekend. On Monday I replaced the primary care physician who never called or came to the hospital in the four weeks we were there. My primary agreed to take the case. He worked with @@@ to get them to accept us. I worked on calling the oncology practice directly to get them to accept us. I worked with the Blue Cross/ Blue Sheild Case worker to arrange transfer. (After two days of dealing with +++ she was crying on phone to me.) It took three days, Neither doctor from +++ helped in this process. On 4-21-09 the oncologist came to our room and told us, "so you are being transfered to @@@?". I said, "Yes, we would like a second opinion." He said "No hospital is going to do surgery on you." I asked what had happened to the ortho consult we had been waiting 5 days for? He said "You are being transfered you are not getting any ortho consult." Then he left. He upset Fred so. I told the customer relations person from +++ I wanted him barred from the room the next day.
We did not get to leave untill evening 4-22-09. When we arrived we found out all the info for transfer had not been sent to @@@. Fred was without pain meds for 5 hours due to lack of paperwork upon transfer. The next day I had to go back to +++ to get the info that had not been sent with transfer. The nurses at @@@ pointed out that Fred had an unlabeled litocain patch and Fentynal patch. The Doctors determined he had a pathologic break and scheduled surgery.
Things are so much better at @@@. We have met daily with a wonderful oncologist. We have seen the urologist, cardiologist, great nurses, a wonderful social worker. We are so happy to be at @@@They are going to do the Kidney removal Surgery.
I still want to do something about +++. No one should go through what we went through. I will talk to anyone. I will go before congress. If you can help me to change this system so this does not happen to anyone else, let me know. It is hard enough to hear you are most likely dying without going through this hell. The system must be changed.
Thanks for your Help,
(The really nice lady at Child's Play)