Tag Archives: Awareness

The Hand of God – Part 2

After my last post it might have seemed like everything is going well, and I certainly don’t want to take away from all of the positives of Kim having a new rheumatologist. I also don’t want this to seem like the other shoe dropping, though it may be hard for me to accomplish that. The reality is that Kim is not doing well right now even though she has a great doctor. The infusion medication for her RD that she started last November, Orencia, has failed her. Whether her body ever responded or not we don’t know, but it’s become plainly evident that Orencia is not helping her. Her breathing and lung function have gotten worse, as have her pain, joint stiffness and swelling, fatigue, and her ability to function.

Her rheumatologist, Dr B, contacted her and recommended switching Kim to another infusion medication called Rituxan. We knew that was likely to be the next treatment option and have agreed to pursue it. She will get her first infusion next week and we would dearly covet your prayers for Kim and our family.

So, in light of this news and the title of these last two posts, where is the hand of God on Kim’s health right now? To be honest, there have been many times in the last few years where it “feels” like God is far away. When Kim’s health has been on a slow and steady decline for over the last two and a half years and when no treatment plan has helped, it’s hard at times to not question where God is. And so we simply fall. Not into despair or into self-pity, but into what we know about Him. We know that He is the same yesterday, today, and forever. We know that His love for Kim is infinite and that He will — for His glory and for our good — work all of our struggles out according to His perfect will. And we know that the very hands that moved people and calendars to get Kim a new doctor are currently holding her. That “under His wings” she is safely covered and protected in spite of what may come. We continue to trust in God’s goodness and to follow His hands wherever they lead.

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Filed under Blessings, Family, God, RD, Rheum, Rituxan

The Hand of God – Part 1

It’s been a while, but in my last post I stated that after our visit with Dr Jack our chief priority was finding a new rheumatologist for Kim. We started that search immediately in October of last year. We had one doctor at the top of our list, Dr B. A member of the Rheum community sees Dr B and had recommended that we try to get her to take Kim as a patient. We had also seen her name in a magazine article listing Dr B as one of the top three rheumatologists in the state.

We sent a letter to Dr B’s office asking that she consider taking Kim as a patient. After going through a few phone call tag sessions the office got back to us and told us that Dr B was not taking patients. Not ones to let a “no” stand in our way, we petitioned them to reconsider. We also asked Kim’s pulmonologist to call Dr B and ask for her to consider seeing Kim since her lung involvement was getting worse. He agreed to contact her. After making a few more phone calls to the office, they once again refused to see her. At this time they told us that Kim would have to stay with Dr Jack because it was the rheumatology clinic’s policy that patients only get two rheumatologists for as long as they need a rheumatologist. Yes. That’s correct. Their policy was that Kim had seen two rheumatologists already since being diagnosed in October of 2011 and that she could not switch to any other doctor. We never knew about this policy and we never got a say in the two doctors that she had. They were simply assigned to her based upon our location and her insurance. Here we were willing to pay extra to travel to another insurance tier to see a better rheumatologist and they wouldn’t allow us to.

At this time, we asked our friend Liz if she felt comfortable asking her rheumatologist, Dr H, if she would take Kim on as a patient. Liz agreed and since she had an appointment the next week she was able to talk with her in person. Dr H agreed to take Kim as a patient so we finally had a new rheumatologist.

At this time I called to schedule an appointment with Dr H and the office manager of the clinic told me that the “two doctor rule” still applied and that even though Dr H had agreed to see Kim we would not be allowed to switch. More phone calls and some outright begging and the office manager finally agreed to bend the rule and let Kim make the switch. She would get the first available appointment with Dr H which was April 8, almost five months away. We took it.

Meanwhile, Kim had started her Orencia infusions. She was able to get through her infusions with no side effects which was a huge blessing. However, she kept getting viral infections due to her lung involvement and her weakened immune system. Because of the infections, she wasn’t able to get the infusions on the proper schedule. She was struggling due to being off of the Enbrel and the Orencia not yet working in her system. Add in a few cases of bronchitis with a compromised immune system and RD and she was struggling physically.

On Friday, December 13, Kim and I were just finishing up some grocery shopping around 6 that evening. My phone rang with a number that I didn’t recognize. I answered it and it was the office manager from the clinic. She said that she had an opening available for Kim on March 10. We jumped at the chance to move her appointment up by a month. The manager then said, “Just to confirm, you’ll be seeing Dr B on March 10.” We were confused. “But Dr B wasn’t taking any new patients. Do you mean Dr H?” No, it was Dr B, the doctor we had originally wanted to see. Somehow Kim’s pulmonologist had spoken to Dr B and explained what was going on with Kim’s RD and her lungs. Based on that conversation, Dr B agreed to take her as a patient. Kim then asked the manager if she should continue with her Orencia infusions and what to do with her other medications and care as she wouldn’t be seen yet for almost four months. The manager asked to put her on hold. She came back just a few minutes later and said that she had called Dr B on her cell phone and that she would see Kim on Monday, December 31 at 8 AM before office hours. From being told that we would not be allowed to switch doctors to having an appointment with the exact doctor that we wanted in less than two weeks. This was nothing short of a miracle. When I was relating what had happened to a friend, she said, “You just saw the hand of God move people.” And she was right.

Kim’s appointment was nothing short of amazing. A doctor who cared and was concerned. Every single thing that the other doctors had been insisting were in Kim’s head, Dr B acknowledged were part of her RD. Kim’s first two rheumatologists had stated that they saw no swelling in any of Kim’s joints and would disregard her claims of pain. Dr B diagnosed swelling in almost every location — fingers, wrists, elbows, toes, feet, and knees — and confirmed that of course there was pain because her body was under attack. She then looked at Kim and said, “You have a very aggressive form of RD. Therefore you need to be treated very aggressively.” Yes. Thank you! This is what we have been asking for since 2011! She spent an hour and thirty minutes with us going over Kim’s history, her symptoms, and a plan for treatment. It was a joyfully emotional experience to finally have our voices heard. Since that appointment, Dr B has contacted Kim on several occasions to check on how she is feeling, to go over treatment plans, and to explain further treatment plans.

I must confess that in the weeks of fighting for new care and feeling like the system is against everything we are trying to do that doubt creeps in and I wonder some times what God is doing. But my friend was right. We did see the hand of God move events, calendars, and people. Yet the truth is that even if that wouldn’t have happened, God was still there. He’s been here with us in the last two years of really bad doctor care and He’s here in this season of good care. His consistency doesn’t change, but my faithless eyes often fail to see Him.

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Filed under Blessings, God, RD, Rheum, Uncategorized

Losing

In December I wrote a lengthy post about Kim’s health and the impasse we had reached with her rheumatologist. We asked for help from the Rheum community and we got it. This is the follow up to that post.

First off, how is Kim doing? Well, she’s better than she was in December, but is still not as good as she has been and is not anywhere near where we would like her to be. We went against her doctor’s orders and continued her on the methotrexate and over the last few weeks we saw some improvement. We attribute this to the Humira and the methotrexate working together like they have in the past. However, we are still not seeing as much improvement as we would like.

We have made the decision to move forward with finding a new rheumatologist. He told us when we saw him in December that he “didn’t know what to do” with Kim’s Rheumatoid Disease (RD). Yes, that is a direct quote. No, that is not acceptable. After my post in December, he sent Kim an email to go over the MRI report that she had done on her hand. Kim’s MRI was negative. Based on the negative MRI and that — in his opinion — the disease was not active and showed no “visible swelling or outward manifestations” he wrote that his only conclusion is that Kim’s joint pain must be “stress, poor sleep, fibromyalgia, or osteoarthritis.” In other words, he was basically saying that Kim’s pain is all in her head. Again, that did not go over well.

But the point of this post is not for me to blast Kim’s doctor. Instead I would like to point out something that only became apparent to me in a conversation Kim and I had the other day. We were discussing moving on to a new rheumatologist and Kim — in reference to her old rheumatologist — said, “It’s too bad. He could have learned so much from having me as a patient.” Now she wasn’t saying that in any egotistical way as if she would be able to impart great amounts of rheumatology knowledge to him. No, she simply meant that he could have learned a tremendous amount simply by having her as a patient. We recognize that Kim has a more severe form of RD than others have. That for those who have a less severe form their treatment is easier to manage. But we also know through our interaction within the Rheum community that the severity of Kim’s RD is not uncommon at all. The fact is that there are many who have it worse than she does. Instead of seeing Kim as a “difficult” patient, we had hoped that he would recognize that for many people with RD Kim’s symptoms are downright ordinary. Unfortunately for him, he missed that.

Because of her rheumatologist’s indifference to her symptoms, his inability to listen, and his unwillingness to explore the full scope of her disease; and his unrealistic holding to textbook definitions and outright denial of real-life evidence of what RD actually looks like, he is the one who is losing out, not us. We will find a new doctor who will work with us and listen, but her old doctor missed an opportunity. A chance to learn what RD looks like in “real life”. An opportunity to be a doctor who recognizes that beyond the disease descriptions there are patients who know more than any textbook because we live with it every day. And that more importantly we are not simply patients, but we are people. If only he could have seen that we were not simply another name on a chart, but that we have real pains and real concerns and genuine fears about our tomorrows with RD. To step beyond the medical hubris and step into the lives of the patients and recognize that we deserve better, then he could have been truly great.

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Filed under RD, Rheum