It has been two months since I posted. Where to start?
Ken had a PET scan.The rheumatologist says that the illness Ken has, whatever it is, cannot be RS3PE, much as the symptoms fit, because certain things should show up on the PET scan and did not. Ditto for rheumatoid arthritis.
As I mentioned in #13, they were looking for cancer (because if Ken had a new tumor, RS3PE would almost certainly be the diagnosis). The VA Rheumatologist (the Fellow I mentioned before) said, "It is good news, Mr. George. You do not have cancer." Of course, that is good news. But in a strange and sickening way, it would have been a sort of relief to have a tumor show up on the PET scan. Why? Because then we would have had a plan of action, a known enemy--even if a bad one--to fight. As it was, it doesn't mean Ken is better. He is continuing to get worse. It just means we still have no diagnosis.
They decided to try Ken out on an Rx that might reduce inflammation and pain. It has been two months, and there is no improvement.
Meanwhile, he has a horrible open wound on one of his toes. He has been going to Milwaukee to the VA wound clinic for weeks now. It is finally starting to show a little progress in healing.
As for the request for a new primary care doctor, Ken's request was denied. He was informed that his PCP was doing "all he needed to do." Interesting, since he has never seen Ken again after the introductory visit. He was told, "If you do not like our decision, write to your congressman."
So we have been waiting for the time to pass for the replacement of the failed knee prosthetic to finally take place in early April. Ken can hardly walk, especially when first rising from a sitting position. His leg is bowing outward. It is severely painful, in spite of the narcotics he is taking. Yesterday we went to the VA for the usual preoperative lab work and visit with the anesthesiologist. The anesthesiologist was concerned about the wound on Ken's toe. He delayed his appointment with Ken and instead sent us to orthopedics. They inspected the wound, ordered additional labs and withdrew four large syringes of bloody fluid from Ken's nearly-basketball-sized knee.
I asked about the possibility that the inflamed knee could be causing Ken's other illness symptoms and was told it was "highly unlikely." The very young ortho doc, who Ken had not seen before, said the wound looked "clean" and cleared him for surgery. Relieved, we headed back to the anesthesiologist.
He was great. I only wish Ken's primary care doctor had shown such careful concern. He asked many questions, looked up records from other places, and said, several times, "But what is wrong? Clearly something is wrong beyond a failed knee replacement. What tests have been done?"
At this point, I think every possible diagnostic test may have been done, either at St. Luke's (at the time the pheochromocytoma was removed) or at Mayo (remember, Ken was there six times) or at the VA. The PET scan was the last.
The anesthesiologist kept shaking his head, looking perplexed. He looked very serious. He told Ken all the risks, of course, which are horrific. And then he added, looking directly at me, "If it were me, I would not get this done until your toe wound is healed. Dr. C. (the surgeon who comes to the VA once a month just to do failed knee replacement surgery) does not know your whole history. He does not know how bad your leg circulation is, nor about your several severe bouts of cellulitis (leg infections). Nor about your current general state of illness. The risk of infection is great and having a wound makes it greater."
Then he said, "If you have an infection, in spite of all the lab work and scans saying you don't, it would explain why you are so ill. You do have to do this knee surgery, because the knee may be making you sick."He went on, "I understand that you do not want to delay. It has been too long already. I am just the anesthesiologist, but I am very concerned. On surgery day, if you don't delay it, insist that Dr. C. actually looks at your toe and talks to you before he does ANYTHING. Insist." He repeated this at least three times before we left.
He told us he was very concerned about pain management post surgery, since Ken is already in severe pain in spite of taking both methadone and Oxycontin. He urged Ken to cut back, saying, "Of course, you are dependent by this time." Of course. "Don't suffer unduly, and if you have to keep up the current dose, do so.....but....really try to lessen it. If you can't you will pay for it later when the knee is worked on."
We decided not to cancel the surgery, for now. If the toe wound is still open at the next visit to the wound clinic, we will consider cancelling.
Which is worse? The possibility of severe infection? Loss of a leg, or worse? Or continued decline because all this illness is due to hidden infection or prolonged inflammation?
We were silent on the two-hour trip home.
There was a letter from Aetna in the mailbox. It informed Ken that his long-term disability with the state is denied. They never received any form from the rheumatologist, in spite of us sending it twice and calling them twice as well. (Remember, the primary care doctor refused to fill it out but the rheumatologist said he would.) We have appeal rights.
I went to bed, put the pillow over my head and cried for a long time. Ken told me this AM that he didn't get much sleep, since he cut his pain med in half before taking a bedtime dose. He looks miserable.
I am going to see my sister in South Carolina next week. She had a near-fatal medical situation earlier this year. I feel guilty saying it, but I am glad I will have a week away while Ken attempts to lower his pain meds. I will file an appeal about the denied disability claim, and I will call the VA patient advocate and pitch a fit when I get back home.
And we will keep close watch on Ken's toe, and try to decide which course of action is the wise one. I hope this makes sense and isn't full of typos. Written on the fly.
Thanks to those who are still reading. I love you.
I still have no words to express my deep sorrow over this incredible situation that has been going on for so very long and for the obstacles that come out of the most unexpected places. I wish I could just sit and cry with you Dorcas....just hold you close and cry....
prayerfully connected, Maureen
My heart is grieved. I am angry and sad for you and Ken. My prayers will continue to be for relief of pain and comfort and hope. <3
no words ... just deep deep frustration, anger and sorrow ... (((D & K))))
I am crying with you, and so very angry. But I am grateful for that anesthesiologist. And that you will get away. You need some time and distance.
Praying and swearing. Love you.
There is nothing any of us can say to make you and Ken feel better. We don't understand all this but we will not give up on praying for the pain to lessen and for Ken's endurance. (And yours too) This all sounds like a bad nightmare. Pray you wake up one of these days and there will be some victories. Have a safe trip Dorcas
Well, Dorcas, thank God Ken has you. Thank you for sharing this story. However sad it is to see how badly the medical system has treated Ken, and by extension, you, it is good that you are sharing this story.
This situation is so unreal, I just shake my head. I keep praying for healing, wisdom and strength. Lord where are you? I know by faith you have not left Ken with out answers, we are just asking for renewed hope.Lord be merciful to your faithful servants. WE stand with them in agreement with Ken and Dorcus for healing, relief and strength. Shirley2
I am so sorry this continues. My heart grieves for you and Ken. Prayers. Prayers. Prayers.
I am so sorry and angry and frustrated with you. And praying for answers and for help for you.
Dorcas, thank you for sharing this with us...keeping you and Ken in my prayers; and giving thanks for conscientious and business-like physicians who are engaged and COMMUNICATIVE. Hoping for peace and comfort for you on your trip...hugs from here.
I can hardly imagine your frustration, beyond the obvious concern about Ken's health. Maybe I could have a good cry over Ken's situation, even though I haven't met him. Keep on being the advocate that you are. Document everything.
I'm currently on the verge of getting a comprehensive 2nd opinion and tests that should have been done before the four surgeries I've had in the last 26 months. And fighting the insurance company for coverage, denied because of clinic screw ups. But not one minute of my situation compares to yours. May God bless your efforts. At the very least, can you see the other primary care doctor in the Cleveland Wi Clinic? My husband is no longer a doc for the VA system, but that was due to the contracting company expecting him to drive 50 miles one way to a different clinic instead of where he was working, which was just 2 miles.
What we wanted was to see the other doc in the Cleveland clinic. Still going to work on that. I'm so sorry for what you have been through. Praying for you, LJ.
So sorry for all the frustration, anger and run around. Prayers continue to be with you both. It is a very exhausting and wearying journey.
Oh, dear God! Please get both of them through this!
Dorcas, I know Ken must feel like Job at times...both of you must.
How can we help?
Feeling so helpless for you right now, but praying hard anyway!
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