YAERV (Yet Another ER Visit)

Banner Estrella
Banner Estrella

For those that don’t know, we ended up in the ER last night again. Not one of our better visits, but certainly not one of our worst. We’re still trying to track down what put Christen in the hospital in September, and we’re seeing a specialist that has done a lot; lots of blood tests, several CT scans (I think three in the last few months), she’s had a colonoscopy, and yesterday she swallowed a camera (that was amazing)! I feel like we’re making progress, but she just had a bad fit of pain and nausea the last couple days that culminated yesterday. It’s the same stuff she’s been dealing with since September, but it was way worse yesterday so when we got the stuff from the camera removed (they hook the receiver box up to you like an EKG) her specialists office recommended we go to the ER.

The wait was the worst, but we knew it would be as soon as we walked in. The place was packed, every seat and wheelchair was taken and people were standing. When they checked her in (took vitals, asked about problem, gave her a wristband, etc) the nurse gave her a couple Zofran under the tongue for the nausea. They took a little of the edge off at first, but we were in the waiting room for three hours before we got called back. It wasn’t really their fault. Against all reason the place actually continued to fill while we were there. The ER actually had to throw a code purple, which basically is a call for help. They bring in additional people, send messages to other hospitals that they could use extra personnel and that the hospitals should only refer people to them if there’s no other option, etc. At the rate things were going, I was worried we’d be there until morning. I knew what kinds of tests they run on someone with severe abdominal pains and nausea (been there done that), and they take a while. The worst part is, we’d already been through all that (several times) so I thought it was going to be a big waste of time. I didn’t need to worry.

Once we finally got called back, we got to see the doctor. His name is Dr. Clever (while it looks like clever it’s said like cleaver…I still think he’s quite clever) and we’ve seen him there a few times, including when we came in for this very issue last September. To my surprise (and relief), he actually said “there are a lot of things we are really great at here in the ER; finding a diagnosis the specialist missed probably isn’t one of those things.” He continued to say that he’d like to just get Christen through this particularly bad episode so that we could continue to follow up with her specialist. I was ecstatic. He ordered an IV for fluids, morphine for the pain, and Zofran again (this time via the IV, which is much quicker acting) for the nausea.

We then went into a waiting room in the back (they definitely didn’t have any beds), hung her IV, and waited. She slowly started improving. We actually met this nice older couple, who live in Minnisota during the summer and here during the winter. The man was the one checked in, and he had never had to go to the hospital/ER/urgent care in his 73 years. All in all, he was doing pretty good and was quite an interesting person. We talked of pets, kids (they have kids and grandkids in both places, which is why they spit their time up), and even literature. He told me about this short story he had read that was written in China in the 1930s and translated to English more recently. The story was about medical procedures in the year 2002, and portrayed the doctors as shrinking themselves and travelling inside the patient to fix him from the inside.

After a while I needed some coffee (surprise surprise). Unfortunately, I know the place pretty well and I know where the coffee for the staff is, where they keep the cups, etc. I’ve been told every time that I can help myself, but I always ask anyway (buttering up the nurses with “please”, “that would be so great”, “tank you very much”, etc doesn’t hurt either…they don’t hear those phrases a lot). This time it paid off because said that the last half pot had been on a while, and asked me if they could make me a new pot! When I returned, the older man’s wife asked where she could get some, so I explained the system and took her back to get her a cup. They’d been there as long as we had, and with no coffee! I guess there are some advantages to being a regular at a place, but I’d prefer to stick to being a regular at Ground Control. It’s more fun, has better food and drink, and is less expensive!

After being in this latest waiting room for about an hour and a half, her pain and nausea were getting back to nearly manageable levels. We decided that when her IV bag was empty we’d ask to be released (they like you to talk to a doctor when we leave), but that wasn’t necessary. About 15 minutes later, when the back was about 90% gone (1000ml bag, marked with dashes in 100ml increments, so it was almost EXACTLY 90% gone), we got called back to see Dr. Clever again. Her pain and nausea were manageable, so he sent us home with a prescription for Vicodin in case she needed it.

As her pain had come down though, she had realized that she was starving. To prep for the camera, she wasn’t allowed anything but clear liquids the day before and up until noon that day. At noon she was nauseas and in pain, so she tried to eat an English muffin but couldn’t really finish. Basically, in two full days she had eaten less than one English muffin. We picked up some soup from Village Inn on the way home (there’s not much open after 10pm on a Monday).

Today she’s feeling more like she has for the last few months: “Not great, but things are manageable.” We’re definitely looking forward to the results from the camera capsule. More than ever I want it to return something definitive. I’m really sick of not knowing what’s making her sick!

Christen’s GI Followup

As many of you know, Christen was in the hospital in late September of this year. When she came home she was on a bunch of medications, which seemed to work as she was getting progressively better. The doctors said she wasn’t healing as quickly as they would have expected, but even though she was going through cycles of getting better and worse (get better, then a little worse, then better, then a little worse, etc), we weren’t too worried because at least she was getting better.

That went on for a few weeks, but about a week ago she started into a dip of getting worse and hasn’t really pulled out of it. Instead the last few days have been really rough on her. She’s in a lot of pain and has been quite nauseas, so we went in for a followup appointment with the Gastrointestinal Specialist that she was seeing while she was in the hospital. First we were quite impressed with Dr. Rodriguez because he was able to remember every detail from the hospital a month ago (not just stuff he could have learned from reading reports, etc). Unfortunately, he was definitely worried because if the problem had just been an acute infection (as had been diagnosed at the hospital) it should have long since gone away with the antibiotics.

After talking to him for nearly thirty minutes answering questions about her medical history, the frequency and location of her pain, the timeline since the hospital, etc, he gave us his plan of action. Now let me stop here to say that this is my kind of doctor. He didn’t say “let’s try the antibiotics again” or even “it’s probably just _____, we’ll treat it with ___”. Instead he laid out several tests and a real plan for action.

He said that while he did think this was serious, he wanted us to know that he didn’t think it was any kind of cancer. Instead, the three most likely things would be Crohn’s disease, Celiac disease, or Ulcerative Colitis. He ordered a CT scan stat (she had one with contrast and one without in the hospital, but this has something different that will let him better see the intestinal walls), and the hospital called us this morning and scheduled it for today at 4pm. She will also go in for a colonoscopy on November 19th, and she has a lab-test list that’s two pages long*.

He gave Christen a few medications to try to help with the symptoms in the short term; Phenergan for nausea, Librax for the cramping pains, and Flagyl to make sure there’s no lingering infection. He stressed repetitively that if the pain and nausea are too much to handle with all these tests, he will admit her to the hospital for a few days and handle everything inpatient. Hopefully Christen will feel a little better with these meds, because I’ve had my fill of hospitals.

*The lab tests he requested that I was able to get down (I’m sure you’ll want to know Stacie):

  • IgA level
  • Tissue Transglutaminase IgC/IgA
  • Iron, Ferritin, TIBC
  • Stool O & P
  • Iron Saturation
  • Anti-sacharomyces cereviciae Ab IgA, IgG, and IgM
  • CRP
  • Stool electrolytes (Na, K, CL)
  • pANCA
  • Folate Level
  • Chromogranin A level N
  • vitamin B12

Christen’s Clots – The Beginning of the Next Stage

This is an update to Christen’s Clots

First I’d like to dispense with the good news. The doctor told us that we get to go home tomorrow, and it sounds like we’ll be able to leave in the morning or mid-day. We’re ecstatic to say the least. We weren’t looking forward to Christmas in the hospital.

Doctor Sharma, the resident pulmonary specialist, came in to talk to Christen and I to explain what was going on. He explained that the clots were most likely caused by Christen’s birth control. It’s a possible side effect, and leave it to Christen be in that small percentage that are affected by it. He said that they started in the lower leg and moved up. As they moved up they move through bigger vessels all the way up through the heart. As they enter the lungs there are small areas they can get stuck in, and that’s exactly what happened. He continued to explain to us the risks associated with blood thinners, which Christen will be on for six months. Basically, for the next two months she needs to take it really easy (so all those of you that will be around her during the next couple months, help me enforce that). Then she needs to be careful for the next six months until she is off the blood thinners. The danger is that bleeding will be very hard to stop, because her blood will be about twice as thin as normal. Most bleeding can still be stopped at a hospital, but bleeding in the head could be extremely dangerous or even fatal.

After he explained all the medical stuff, he asked if we had any questions. We immediately asked when we’d be able to go home. After checking to make sure she would be able to get her injections at home, he said we could leave tomorrow.

The nurse came in a while later, carrying the Lovenox shot. It’s a strange feeling poking your wife with a needle. Even though you know it’s for her own good, it just doesn’t feel right. Even so, I did it successfully and while Christen said her stomach was turning because she was so nervous (she even made a crack about being more scared because someone with no experience was giving the injection), the nurse said I did great. I’ll be honest though, I’m no looking forward to 5 days of this.

Thanks to all who have prayed for us. Please continue to keep us in your prayers, being out of the hospital doesn’t mean we’re out of the woods yet.

Christen’s Clots

In the middle of the night Thursday night (December 17th), Christen woke up with severe pain in her left calf. You have to understand, this isn’t all that abnormal. With her Fibromyalgia she often has rather severe inexplicable pains. They usually pass after a day or so, especially if she gets some good sleep. We spent Friday, Saturday, and Sunday applying heat packs and massaging the leg, but by Monday morning it was still hurting so she called her doctor.

Christen has a great doctor and he understands her unique medical history, so he made room for her the same day and she went to see him at 1pm on Monday. When she explained the pain, her doctor said he was worried it might be a blood clot. He called all over the valley to find an imaging center that could do an ultrasound right away. The closest one that could get her in was on 3rd street and Virginia Ave, and she had to go straight there from the doctor. Unfortunately, we only have one car and I hadn’t gone with her because we didn’t think it was going to be anything major.

Doug to the rescue. Christen’s dad was able to leave work (thanks Curtis), go switch cars with Peggy (Christen’s mom), and come pick up Xavier and I. He took us all the way to the imaging center, which was great because it allowed me to drive Christen home afterward, especially since all the pushing on the already painful leg left her limping pretty badly.

By the time the imaging center got the results back to her doctor’s office, they had gone home. The next morning when her doctor read the results, he consulted with a hematologist and then called us to let us know that she did in fact have blood clots (plural) in her lower left leg, he wanted her to get another ultrasound on the leg, and he’d be prescribing blood thinners. He explained that she’d start with two injections a day for four days and then transition to oral medication that she could be on for up to three months or more. Unfortunately it didn’t turn out to be that easy.

Later that day (Tuesday, December 22nd), before we’d even gotten the prescription for the doctor, Christen started having a burning pain in her hip. She called her doctor and he said to go straight to the emergency room at Banner Estrella Hospital in case the blood clots were moving.

We arrived at the emergency room around 3:30pm, and again it was Doug to the rescue. He met us there an picked up Xavier. The emergency room got us in so quickly that Doug almost didn’t make it there in time (even though he was only a few minutes behind us). After taking her medical history, a doctor met with us and said that she’d be getting another ultrasound of the leg (they didn’t have the first one) as well as a CT scan with IV contrast to see if the clots had moved up to the heart or lungs. We were then moved to another waiting room, which is for people waiting for tests. We were only there for a few minutes when we were called back to get her IV put in and blood taken. Just as the guy finished, a lady appeared to take us back for the ultrasound. Things were moving really fast, and unfortunately we’ve been to this emergency room before so we have a baseline for comparison. I think blood clots are like having a Disney Land FastPass.

In the ultrasound room, the tech was very nice. I was full of questions and she was quick to offer answers. As she started at the top of Christen’s leg, she explained how they look for clots. First they find the vein and look at a cross section of it so they can see it’s open. Then they push on it and make sure it pushes flat. She said to imagine that the vein is a garden hose. If you step on it, it will flatten and the sides will push together nicely. However, if there’s a rock in the hose it won’t close or will only partially close when pressure is applied. After a few more questions and lots of pointing on her part, I was able to follow along and knew what I was looking at. However, I didn’t know that what I was looking at was the easy stuff. Just below the the knee the main vein bifurcates into two slightly smaller veins. At that point I could still see them. Then each of those bifurcates again. I was lost. Even the tech (who had years experience) was having a hard time. She called in another tech for an extra set of eyes. It seems that one set of these smaller veins (I think she said they are the “Peroneals”) were basically full of clots. From a couple inches below the back of the knee all the way to just above the ankle. While this was obviously not great news, it was better than the alternative. If the clots were gone, we’d know that they had moved, and the lower leg is a far better place for them to be than further up the body.

After the ultrasound, we went to a third waiting room which is for patients that are waiting for test results. We were only there for a short while before they called her back to get her CT scan. I wasn’t allowed into the scan room, but I only waited in the hallway for a few minutes and they were done at about 6:35pm. We were told it would be about 30 minutes until we got the results, and were put back into the waiting room we’d just come from.

Just as promised, the doctor came to us with results about 30 minutes later. The news, however, wasn’t good. The CT scan showed blood clots in the lungs. He sent us back to where we’d gotten the IV put in, and they gave Christen a shot (100mg) of Lovenox, a blood thinner.

At this point they told us that she’d be admitted to the hospital, but it takes a while to get that processed and they wanted to get her hooked up to a heart monitor. They had to clear a room (process a discharge) because they were completely full, but they worked until they got us into a room inside the ER and hooked her up to a monitor. We stayed watching the heart monitor until they got us a room upstairs in the Telemetry ward.

They didn’t want her to be off the monitor even just for the time it took to go up two floors and down the hall to her room. Instead, they brought a portable machine and plugged her into that for the trip upstairs. Once we were in the room, she got a new set of wires hooked up to her, and instead of having a monitor in our room the data is sent straight out to the nurses station. At roughly 9:30pm we were finally in our room. Peggy was able to stay with Christen while I ran home to get clothes, toiletries, laptops, phone chargers, etc. I was back in the room by 10:30pm, and by about 11:30pm they were done taking care of Christen, logging in all the medications she takes, etc.

During the welcome to the ward, we were told that she wouldn’t get a lot of rest here. The nurse said there would be doctors, nurses, nurse assistants, lab techs, etc in and out of the room regularly. She was right. We probably had 6 people through here between midnight and 6am, including a lab tech that took 7 vials of blood from Christen at about 5:15am. He apologized that he had to take so much, which he explained was because some of it needed to be sent out while some would be processed here, but I think he missed the obvious “sorry to wake you up at 5am and then immediately stabbing you with a needle.” Still, they were all nice and all seemed to really know what they were doing.

At just after 6am, one of Christen’s doctors came to visit. He explained that we’re waiting on some results from the blood work to find out how long we’ll be here. The treatment will be pretty much the same no matter when we go home. Christen will get injections of Lovenox (the blood thinner I mentioned earlier) in her stomach twice a day, and this afternoon she will start taking Coumadin, which is an oral blood thinner. I was told that there’s a good chance that I’ll be giving her the injections still after we go home, so at about 8am this morning the nurse came in and showed me how to do it. She said that I’ll give Christen her injection tonight for practice.

That pretty much brings us current. We still haven’t gotten the results of the blood work. I do want to say that we really appreciate all the support from our friends and family. I had someone call 10:30pm last night to ask me if I needed some company if I was going to be sitting up all night. I declined, but the thoughtfulness of all the people that have called, E-Mailed, texted, etc has been overwhelming and we are extremely appreciative. We’ve already had a few visitors, and if you’d like to visit please feel free (just call Christen or I to get the room number). We’ll try to keep everyone updated as we get news, but it’s hard to make all those calls and send all those E-Mails, so please feel free to spread the information as you get it.

Read the update: Christen’s Clots – The Beginning of the Next Stage

What is Fibromyalgia?

I started reading 100 Questions & Answers About Fibromyalgia which is written by Sharon Ostalecki, PhD and Martin S. Tamler, MD, FAAPMR. Sharon has lived with Fibromyalgia and it’s been pretty cool to get the perspective of someone who has deal with the problem. I’m barely into the book, but I’ve learned some very interesting things.

First, Fibromyalgia is not technically a disease; a disease has known causes and the symptom process is understood. Fibromyalgia is a syndrome – a group of signs and symptoms that characterize a disorder. Basically, they don’t know enough about it to consider it a disease.

Continue reading What is Fibromyalgia?

Fibromyalgia – The Journey

Christen and I struggled for a long time trying to figure out why she was constantly sick, why her whole body hurt constantly, and why she didn’t have the energy she should even after sleeping half the day away. I’m a “fixer”. I prefer to approach problems directly and solve them. I love my wife more than I can even put into words, and it drove me crazy that I couldn’t fix her. I struggled through, going with her to doctor after doctor, specialist after specialist, thinking all along that once someone put a name to her problem that we’d be able to fix it.

Well, not that long ago someone finally put a name to it. It’s called Fibromyalgia. It wasn’t good news, after all the word Fibromyalgia literally means “muscle and tissue pain”, but I thought that we finally had something we could face head on and fix. Unfortunately, that’s not really the case.

Continue reading Fibromyalgia – The Journey

Thanks from a Sick Wife and a Haggard Husband

Christen has been having a tough time over the last couple weeks. She went to doctor because she thought she had a bladder infection, and it turned out she was right. The doctor (who’s great by the way) prescribed her Levaquin, which as it turns out is a really expensive antibiotic that doesn’t work on Christen. She went back to the doctor after taking all her antibiotic, and found that the infection had spread through her urinary tract and into her kidneys. This is nothing new mind you, she gets these pretty regularly, but the fact that the antibiotic didn’t work made it far worse because it means she’s now been experiencing progressively worse pain for over a week. Combine that with her Fibromyalgia and the pain started to get to be more than she could bear.

Continue reading Thanks from a Sick Wife and a Haggard Husband

A Glimpse of Boston

The View from Our Hotel Room at the Royal Sonesta
The View from Our Hotel Room at the Royal Sonesta

I know, I know. We’re on vacation. However, vacation or no, I’m still a geek and I’m still fully wired. As most of you know, I was at a conference for the first couple days, so today was the first full day of vacation. We enjoyed it by sleeping in until we couldn’t sleep any more, and waking to the beautiful view from our hotel, which overlooks the and then casually strolling down the street and around the corner to the Museum of Science. Christen and I both enjoy science and mathematics (sick and twisted, I know), so we had a lot of fun. They even had a section on the history of computers, to satisfy the serious geek within me. This evening we’ll be going across the street for dinner at Bambara. It’s pretty nice having a hotel that is so close to everything.

Tomorrow we’re going to be heading over to Boston Common, to walk the Freedom Trail.