Crohn’s disease

Same hospital, different patient

Suzy Taylor Oakley Crohn's disease, family, God, health, medical, work

After so many months visiting Bruce in the hospital and having to make trips back and forth, the shoe was on the other foot this week.

Monday morning I went to the ER after telling a co-worker, “I feel kinda funny.” After having a couple of weird little symptoms over the weekend (that I hadn’t told Bruce about) and the co-worker telling me I looked “really flushed,” I decided to get checked out.

After a few tests I was diagnosed with mitral valve prolapse with mitral valve regurgitation. They did some tests Monday and kept me overnight for observation, and today was the TEE (transesophogeal echocardiogram). That test was done after the cardiologist heard a heart murmur during the regular echocardiogram but decided to get a better view by making me swallow an ultrasound transducer. Let me tell you, that was not fun.

I didn’t tell the second doc (the one who explained the TEE yesterday and performed it today) until right before the procedure that I have a strong gag reflex (I can’t even clean wet hair out of the shower drain without gagging – it’s not pretty). He had mentioned that some people have trouble swallowing the transducer. You have to gargle this viscous numbing solution for a few minutes, then swallow the solution, and if that doesn’t quite do it, they spray more numbing stuff down your throat. After the third spray I threw up the viscous gel stuff (I’ll spare you the details – let’s just say there’s a reason they don’t let you eat for several hours before a procedure like that). The doc said he had had patients who had trouble with the stuff but the throwing up was a first for him.

So he had to put me under – or at least he tried, I was told later. (One thing I did forget to tell him is that not only did I inherit the gagging thing from my dad, I also inherited the need for stronger drugs than most people require – Dad once woke up on the operating table during back surgery.) They give you an amnesia-inducing sedative, so I don’t remember, but apparently I was alert throughout the rest of today’s procedure. Let me just say that I’m really glad I don’t remember, although my sore throat is a constant reminder albeit a really good excuse for frozen yogurt when we got home this afternoon.

The bottom line is that many people live with mitral valve prolapse with no problems. The TEE showed more damage to my valve than they were expecting, but after one doctor (the one who did the TEE) brought up the real possibility of surgery (the scary, crack-open-your-sternum kind of surgery), the original doc said he just wants to monitor it closely. I have another echocardiogram scheduled for December, then he’ll see me every six months. I intend to seek a third opinion, however, just to be sure.

One of the lessons here is that early detection is extremely important. I had ignored a couple of things going on with me over the weekend, but when I got to work Monday and had the strange lightheaded feeling, I decided not to ignore it any longer. Ironically, those symptoms don’t seem to be related to the heart valve problem. I don’t believe in coincidences, so the other symptoms, however minor, may have saved my life – maybe not this week but down the road. (The link I provided above says mitral valve prolapse isn’t dangerous, but I also have the “regurgitation” part, in which blood leaks back into the chamber and can cause other problems.)

Bruce was telling the doctors that with his Crohn’s disease we’ve learned a big lesson about ignoring symptoms. In 1998, he nearly died before I could get him to see a doctor. When I finally told him I was taking him to the hospital, they discovered the disease that has taken so much out of him these past 10 years, and especially the past 20 months.

But I told him it’s because I read too many magazine articles about people who ignore little things until it’s too late. Monday morning I just finally decided to stop ignoring the little signs, even though they turned out to be “merely” stress related. Bruce and I joked yesterday that my job, which has caused me an extreme amount of stress in the past 11 months, may have saved my life. Who knows? It may be true.

But as I often say, I think it was “my guardian angel working overtime.”

Thanks to all of you who have been praying for us.

Doctor visit update

Suzy Taylor Oakley Crohn's disease, family, health, medical

Before we got to Bruce’s appointment Monday, the abscess burst on its own. The doc said that was a good thing — saved the surgeon having to go in and drain it (and us a lot of money — my thoughts, not the doc’s). Bruce can walk a little better now that the swelling has decreased, but he did have to take pain pills over the weekend, something he hasn’t done in several months. The doc told him to finish the antibiotic and call him in a week. He adjusted a couple of Bruce’s other meds (increased one dosage, decreased another).

Just as we were leaving for the appointment Monday afternoon, the home health people called. They were the ones who were supposed to administer the new medication that we’ve been waiting three weeks for the insurance to approve. Home health found out that the insurance has turned us down.

Not like we haven’t been down that road before, but it’s awfully wearing on both of us, not to mention our doctor, who has said he will fight with them if we want him to. We love him so much. Not once has he ever indicated that he isn’t willing to tackle all the mess of paperwork we throw at him. The closest he came was to scrunch his face and stick out his tongue when we told him that the insurance won’t approve the Cimzia.

We also love his nurse, Brandi, who has been ever patient with our questions, requests for paperwork, prescriptions, last-minute appointments …

We are blessed to have such good care with our doctor and his staff.

If, ands and butts

Suzy Taylor Oakley Crohn's disease, health, medical

This weekend Bruce started experiencing worse symptoms in his rear — the same problem he had in December, when he passed out in the bathroom as the abscess burst. We had his doc paged at the Ole Miss game this afternoon, and he put Bruce on antibiotics until we can make an office visit Monday. If the antibiotics don’t work, he may have to have surgery again. Only time will tell.

The day Bruce was discharged from the hospital last month, the doc said he wanted to try a new drug. We are still waiting for insurance approval for the drug. Monday, it will be three weeks since it was prescribed.

Bureaucracy is a pain in the butt sometimes.

Living with Crohn's disease

Suzy Taylor Oakley Crohn's disease, health, medical

Here is a tiny glimpse of what Bruce deals with when he is in a Crohn’s flare-up, which has been the case for the past 17 months. He was diagnosed nearly 10 years ago, and we learn something new every time he gets sick. Click the link above, and listen to the voices of those living with the disease. Perhaps their stories will give you a little bit more insight into Bruce’s situation.

And if you click to Bruce’s blog, please know that he’s really a nice guy; he’s just gotten a little angry lately as he’s been confined to the house, with only the dogs, the TV and the Internet to keep him company.

4:22 p.m.

Suzy Taylor Oakley Crohn's disease, family, health, medical

Bruce and I drove away from the back door of the hospital at 4:22 p.m. That’s 5 1/2 hours after the doc said he could go home.

It’s 6:30 p.m., and I have dropped off his prescriptions, filled the car with gas (can’t expect these lower prices to last forever!), gone back to the store and picked up his new meds and a few soft foods, and I’m back home ready to work for the rest of the evening. My two busiest days at work are Tuesday and Wednesday, so please pray for my strength and endurance. Now that Bruce is home, I have to actually go to the office the rest of the week. I’m sooooo tired.

Aack!

Suzy Taylor Oakley Crohn's disease, health, medical

The doc was in at 10:45 this morning and said Bruce could go home. At 1:30 I said to Bruce, “Gee, it’s taking them forever. They haven’t even removed your port yet.” He reminded me that last time he didn’t go home until 7 p.m., but I reminded HIM that the doc didn’t give that order until 4 p.m.

At 3:30 today, I went and asked a nurse what is the average wait time for a discharge to be processed, and she said it depends on when the discharge nurse sees the order.

She checked on it and discovered that Bruce’s chart had been put back in the rack and no one had seen the discharge order!

Aackkkkk!

Tonight I will let you know what time we actually got to leave this place. (Too bad we can’t get them to deduct a few thousand off our bill because of this. Believe me, I’ve tried to get charges reduced because of hospital incompetence. It’s a losing battle.)

In the interest of fairness, I should say that overall we have been treated well here. We know these things happen, but we are so ready to get home. Our furbabies will be happy to see Bruce, and I will be glad to have him there with me tonight.

Woohoo!

Suzy Taylor Oakley Crohn's disease, health, medical

The doc was just here. He wants to skip the Humira today, send Bruce home and try him on the new drug, Cimzia. That will require letters, insurance approvals and ordering, plus we’ll have to visit the doc’s office for the injections about once a month. We did the Humira injections at home by ourselves, but that will not be the case with Cimzia. Let’s pray that the new medication works. Of course Bruce will also be on his two maintenance drugs (which he has taken for nearly 10 years), plus steroids and antibiotics for a while.

The hospital staff still has to come by and take the port out of his chest (where he’s been getting all the medicine and nutrition) and do all the discharge paperwork, so it may be this afternoon before we leave, but things are looking up.

Thanks for the prayers, but please keep them coming.

Monday morning hospital update

Suzy Taylor Oakley Crohn's disease, health, medical

Factoids from the beginning of Week 2 in the hospital:

  • It’s 10:15 a.m., and still no word on the Humira.
  • The doc said yesterday that he would be in around 11 a.m. today. I will update you if there’s anything to tell (maybe that he will discharge Bruce if all goes well with the Humira???).
  • Bruce’s last bag of IV food will run out in the next hour or two, and he’ll probably be off of all IVs after that. It’s a sign they’re getting ready to kick him out. That doesn’t guarantee he’ll go home today, but they’re weaning him off stuff …

The challenge once we’re home will be to keep his weight up. I have trouble getting him to eat at home. When I call him from work, the last thing I usually say is, “Eat!” Left unsupervised, he would starve to death. I’ve often said, “I live to eat, and Bruce eats to live.” That crazy skinny man!

I don’t get it. Do you?

Sunday morning hospital update

Suzy Taylor Oakley Crohn's disease, health, medical

I was just about to write that the doc hadn’t been in today, and in he walked.

He’s going to ease Bruce off the IV fluids (actually, they’ve been doing that already, although they did give him the lipids again this morning) and give him a dose of Humira today, along with Benadryl to ease the typical injection-site reaction from the Humira. He’s also increasing one of the maintenance drugs Bruce has been on for nine years — the one that, in my opinion, started the downhill slide for Bruce when the doc tried taking him off of it in January 2007 because it puts him at higher risk for cancer. (We now have a cancer insurance policy.)

He said Bruce can possibly go home Monday, unless he starts getting worse again with this new drug therapy — in which case, he’ll consult with the surgeon again.

The doc just came back in and said the hospital pharmacy doesn’t have any Humira, so it may be Monday before they can get any. (We have also discussed the newest Crohn’s drug, but I imagine they would have to order that one. His partner has used it on some of his patients, with promising results.)

Still a waiting game. Keep the prayers coming.

Friday afternoon hospital update

Suzy Taylor Oakley Crohn's disease, health, medical

The GI doc was just here (2 p.m.). He’s keeping Bruce in the hospital until “Sunday or Monday.” Then he’ll switch him to oral antibiotics and steroids.

Doc mentioned trying the newest Crohn’s drug, which would be a maintenance medication. The disadvantage of the new drug vs. Humira, which we injected at home every two weeks, is that the new drug is administered at the hospital. Bruce had inconclusive results with Humira. Because he had just had surgery, which we believe was what finally did the trick on the last fistula, we never could tell whether the Humira was doing any good. Also, he had an injection-site reaction every time he had a dose of Humira. The area would swell and itch. We would be willing to live with that if we thought the Humira was really helping, but the doc is ready to try the new drug in a few weeks. More on that later.