Thursday, February 25, 2016

The Doctor Says It Is Inoperable ... Now What?

Bill, Kathy and Nathan
January 2016
I love my husband. On January 1, 2016 we celebrated our 29th wedding anniversary. (Actually, we didn't celebrate because we were afraid to schedule anything as we were on "babywatch" for Nathan Jozsef. Nathan waited until January 17th to make his entrance).

So with our family complete, my thoughts turned to what we could do to celebrate. There are a couple of "issues" that need to be considered. Bill tells me he is not interested in doing anything that requires much walking. I was surprised because we went to D.C. less than two years ago, and he walked everywhere. He told me it was different now. We went to New Jersey last spring, and he let me know that it was difficult.

He gets three or four colds a year, and when he does, they are life-threatening. His doctor suspected pneumonia with his last cold, but the X-rays showed his lungs were very congested, but no pneumonia. Bill will be 80 years-old on May 6th, and he has let me know repeatedly that his personal goal is to "make it" until then.

As his spouse, I don't know how to plan. Almost two years ago, his cardiologist ordered up several tests. We were then called in and told, among other things, that he had three blocked arteries. They advised us that they would not recommend surgery as they thought that any surgical intervention would leave Bill in worse shape than he currently was. Bill continued to ride his bike on the bike trail and meet with friends over coffee and/or lunch. He tinkered with his multiple hobbies. Things were as good as could be expected.

Three weeks ago, Bill was experiencing extreme back pain. We went to the Emergency Room at U.C. and spent the entire night there. It was a snowy night and the hospital was understaffed. After a few tests, Bill was diagnosed with polymyalgia rheumatica, a condition he's had before that is usually treated with prednisone and anti-inflammatories. It ended up being a misdiagnosis as the ER doc had misread the SED rate -- that's another story. They gave him an injection of dilaudid which took the edge off, and home we went.

Three days later, we were in the ER at Christ Hospital. We've always known that Bill has an extremely bad back, but due to his cardiac history, he had been told to wait until he couldn't stand it. Now is that time. They ordered an MRI for the next day and we were able to get an appointment with one of the Joint and Spine Center doctors for the following afternoon. The MRI showed that his back was in far worse shape than we thought and that he needed surgery. Now for the conundrum. BILL CAN'T HAVE SURGERY! When we met with the doctor, she told us that she didn't think she would be able to find a surgeon willing to take the risk.

Three days later we were back at Christ again because of Bill's fears that his "back problem" had now extended down his left leg and throughout his groin area. This is not an unexpected symptom, and the doctor ordered an ultrasound, blood and urine test. They ended up giving him an injection of a heavy-duty anti-inflammatory, with the hope that it would "get him through" to his follow-up appointment scheduled for next Monday.

So here is my question: What do either of us do in light of what looks like "the end of the road?" How many second opinions do we want to get? Do we dare plan a trip? How can we get a doctor to level with us? Do we want a doctor to level with us? What does Bill want vs. what I might want? I think we will just have to play out our hand because, unfortunately, the answer doesn't seem to be on google.Thoughts?.

Bill and I have both tried to follow the philosophy of Theodore Roosevelt who once said, "Do what you can with what you have where you are."  

I pray for God's guidance.

Kath

4 comments:

  1. I spoke to you last week about this. Unfortunately it doesn't appear to have any easy solutions. I will pray for your guidance and for Bill. Give Bill my love.

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  2. Kathy. My heart goes to you both. My first comment is if your faith carries you, trust our GOD to carry you through this. My husband married me the same way Bill married you. Yes in church with a Priest. I saw a post on Facebook recently that would help if I could remember how it was said. But we have our life and we should be thankful for it, because we already have so much more than many others. I am going to do extra prayers for you both and the family. I would say enjoy each day as it comes and be thankful for what we have as it comes and thank God for all He gives us.

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    1. Thanks, Susi, for your kind thoughts and prayers.

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  3. This is a difficult time with so many hard questions. I think that talking honestly with each other and the doctors so that you know what to expect, what kind of pain control is possible, what your husband can do while taking the pain meds, all that before you can even begin to figure out what you all want to do. Sounds like prayer is very important right now. Wish I had a magic wand and could make it all good.

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