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.

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.

When Bad News Is Good News

It’s been too long since I’ve written and much too long without an update about Kim’s health. The summer and fall were crazy busy with the kids involved in baseball, football, swimming, and going to college. Much less all that we tried to add to the mix. Yet we made it through this far without going crazy. A lot has happened with Kim’s Rheumatoid Disease (RD) since I last wrote and we’d like to let you know what’s been going on over the last few months.

In early summer Kim noticed that she had a couple of small bumps just under the surface of the skin on the top of her feet that were becoming excruciatingly painful. Her feet have always been painful, but they were growing increasingly so besides just the bumps on her feet. She saw her doctor and he had some x-rays taken in June. Unfortunately the x-rays didn’t show anything and the doctor had no answer to the increased pain in her feet or the bumps that were developing.

Summer also saw us trying once again to get Kim off of her prednisone. We don’t like the weight gain it has caused or the potential long term side effects that come from being on prednisone for years. Unfortunately, even on an incredibly slow taper, we once again realized that until her RD is better managed she will need to stay on it as she simply cannot function without it.

As summer moved into fall Kim continued the steady loss of function that she’s been on since before her diagnosis. Slowly, over the weeks and months it is apparent that her disease remains active despite her switch to Enbrel. It’s not something you notice from one day to another, but when you look back over the months the steady decline is clear as there is less and less she can do. Her pain continued to increase over late summer as she noticed that besides her hands and feet, new joints like her elbows, wrists, knees, and her hips were being affected. It also became apparent that her lung disease still seemed to be effecting her quite a bit. We also noticed that the bumps on her feet were getting large enough to be seen rather than just felt. In church one Sunday Kim nudged me and pointed at her sandaled feet. It was the first time we realized that the fourth and fifth toes on both feet had started rotating outward. In just a matter of weeks, her pinky toes on both feet had rotated almost to the point where you couldn’t see the toenail when looking straight down at them. We scheduled an appointment with a podiatrist and added more things to the “need to talk about” list for her next appointment with her rheumatologist.

Kim and I went together to go see her rheumatologist at the end of September. We had a lot to talk with him about and wanted to push strongly for Kim going on an infusion to treat her RD more aggressively. Unfortunately, our meeting with DR Jack (Not his real name. It’s just short for the term I now call him.) did not go well. Kim went through the list of new symptoms that she was experiencing. He disregarded all of them and tried to tell us that her pain, fatigue, etc were simply side effects of some of her meds or were just in her head. When we discussed treating her more aggressively to get her off the prednisone he looked at Kim and said, “You need to take responsibility for your weight gain. It’s not the prednisone, it’s because you are eating too much and not taking care of yourself.” Yes, that’s a direct quote. No, Kim does not eat too much. Yes, she doesn’t exercise because she can’t because of her disease. Kim then asked about her toes rotating and he said, “That’s not your arthritis. It’s because you’re getting old.” Apparently forty-two is now old and everyone’s feet do this when they get into their forties. Also, I believe at this time I should be commended for not punching him. As soon as we can we will be finding a new rheumatologist though this will require us to move to a different tier and pay higher deductibles with our insurance.

The week after Kim’s appointment with Dr Jack she went to see the podiatrist. He explained that the bumps on her feet were because her feet are starting to deform. He prescribed orthotics which he hoped would slow down the damage being done to her feet. He also looked at the x-rays that had been taken back in June by the other doctor. He noticed on the x-rays something that the other doctors had missed. The fifth toes on both feet showed minor joint erosion. Seriously, never have we been so happy to hear bad news! Joint erosion is bad, but finally, after two years, we have actual proof that her RD is very active even though her SED rates and inflammation markers have always been low.

Surprisingly, Dr Jack’s office called and said if we wanted to that Kim could start on the infusion drug Orencia. I have no doubt that the only reason that he prescribed it is simply to try and appease us. He has never taken Kim’s lung disease as being anything serious or important so when I was researching Orencia and noticed that it can cause lung problems we contacted the pulmonologist to get his opinion. Prior to agreeing to start the Orencia the pulmonologist had Kim do another pulmonary function test two weeks ago since she hadn’t had one done since April. Unfortunately, we received more bad news. Her lung disease has gotten worse. The PFT showed that her lung function has significantly declined since April. We followed up the PFT with a CT scan of her lungs. For the first time her CT shows clearly that she has a chronic obstructive pulmonary disease (COPD). In spite of her COPD worsening the pulmonologist sees no need in doing any further testing at this time. He did give his okay for her to start the Orencia which she will start next week. We move forward with this knowing that she could get better, but there’s also a chance it might not help and could make things worse. We’re willing to take the risk and hope for the best rather than sitting by doing nothing.

So some of you might be wondering how we are “doing” with all of this. Honestly, we are doing well. We stay focused on each day and don’t concern ourselves with the “what ifs” of the future. We have a fantastic group of friends and family supporting us. We have received gifts, meals, and most importantly, prayer as we have walked each step of this trial. In the midst of all of this we continue to have peace that our sovereign God is holding us exactly where He wants us and there is no better place to be. We thank you for your continued prayers and support.

Psalm 16:5-8
5 The Lord is my chosen portion and my cup;
you hold my lot.
6 The lines have fallen for me in pleasant places;
indeed, I have a beautiful inheritance.
7 I bless the Lord who gives me counsel;
in the night also my heart instructs me.
8 I have set the Lord always before me;
because he is at my right hand, I shall not be shaken.