When my husband got sick...really scary sick

My husband Richard LOVES South America; the culture, the language, the history—everything! We even took our honeymoon to Chichen Itza, the Mayan ruins on the Yucatan Peninsula.

A few years ago Richard was hired by an educational organization to take a group of exchange students for the summer. This same organization offered Richard the opportunity to take students to Machu Picchu, Peru the following summer as a chaperone but he didn’t have enough time to get the amount of students he needed so he had to cancel the trip.

I took up running recently to train for my dream of hiking the Grand Canyon into Havasupai Falls. In my effort to recruit a small group for my dream trip, some very dear friends of ours reversed our invitation and asked us to go to Machu Picchu, Peru with them instead. It not the train version, it’s a 4-5 day “roughin’ it” hike up the Ancient Incan trail.

Richard’s an Eagle Scout and loves camping and the outdoors so I knew this way of seeing Machu Picchu was right up his alley, he just had to get in shape for it. Our friends were planning their Machu Picchu trip right around the time of Richard’s Spring Break and our anniversary so it was easy to make excuses why we should go, besides the fact that he has wanted to take this trip for as long as I have known him.

I thought this trip would also be a great opportunity to motivate “Senor Juell” to make another effort to recruit a group of his High School kids to go to Peru. If he went to Peru on his own then he would already “know the ropes” and feel more comfortable going back a 2nd time with his students.

So I put the breaks on the Grand Canyon trip and put my energy into Peru. We were a little hesitant at first because we weren’t sure exactly what it would cost and if we could afford it. My dad insisted we go and offered us his air miles, our sisters and my mom insisted we go and offered babysitting (we have the BEST family!). It was sort of hard to say “No” so Richard started running too; he ran his first 5K race on Thanksgiving day 2009. It was the Dana Point Turkey Trot and it was a beautiful day. He had been training for it for a couple of months and he earned a really great time, right around 30 minutes. This is great for a non-runner.

We had a really nice Thanksgiving break. We even took our Christmas Picture on the following Sunday, probably the earliest we have ever taken it. Richard was surprised at my earliness (is that a word?) in organizing the picture and he was really proud of me for making it happen, especially since I am the procrastinator in the family and he likes to get things done early.

The next morning he woke up to go to work and complained that his feet were all “numb and tingly.” Half way through his day he said “I had a shooting pain down my leg and then my legs started to go numb and tingley.” Then he started complaining of having an “eyeball headache.” What’s an “eyeball headache”? I thought that was strange. That night he went to the urgent care and the Dr. told him he had “Myalga.” She said it would get a little better each day and by Friday it would be gone.

Monday night was horrible. All night long Richard was crying in agony from upper body pain, asking me to move pillows around behind him and help him re-adjust his body to try to get comfortable. He said he felt this weird pain in his nerves and his muscles and it was a different kind of pain than he has ever felt. The next morning Richard was short of breath and much worse so I took him to the ER. He walked into the ER on his own with a slight limp but he did walk in on his own. When he finally got a room and got checked in, Richard just wanted to lie on the bed. We asked the nurse for a pillow a couple of times and we finally got one about an hour later. Richard was in severe pain and moaning in agony asking the Dr. for something to kill the pain. They started him off with a mild short lived pain killer they gave him by a shot. It didn’t work, the Dr. was annoyed, then they gave him Morphine; it didn’t work so they gave him more. The Dr. was more annoyed. It didn’t work so they upped his dose again. The Dr. started treating him like a drug addict looking for a quick high. (Richard has never ever experimented with drugs so I was shocked at how he was being treated). Richard told the Dr. that the pain was a different kind of pain than he has ever felt, that it felt like it was in his nerves and his muscles and that it was eating away the nerves. The Dr. was annoyed with Richard and chewed him out just before discharging him. He said “you can’t come to the ER and just expect to get out of pain, it’s not that easy, there’s no quick fix!”

Still in severe pain and in a very uncomfortable hospital bed, Richard wanted out of there, thanks to the insensitive hospital staff. So when they discharged him, they walked away. Richard was just thinking that it would be better to be in pain in his own bed than in the hospital bed where they’re not helping him.

He had been lying in that bed for 6 hours. When he got up to leave his legs buckled and he fell to the ground. I helped him up and used all my strength to help him get to the bathroom that was about 30 feet away. He practically hop jumped onto the toilet throwing his arms up against the backdrop tiles behind the toilet, then twisting himself down so as not to fall when turning. Once he sat on the toilet he told me there was no way he could get up. I left the bathroom and went to get the nurse and told her he couldn’t walk. She didn’t seem to want to do anything about it so I asked if they had a wheel chair and she pointed to where they were and moved on with what she was doing. The Dr. was gone by now, he didn’t seem to care or he was just stressed that night, not quite sure. By this time I was just doing whatever Richard wanted me to and he wanted out of that place so I did. Looking back I should have demanded he stay and find out what was wrong. Hindsight is always 20/20 right?

When I wheeled him through the front door of our home, he immediately threw himself onto the counter of the entry way bathroom and started throwing up in the sink. Richard would never normally throw up in a sink if he had any control over it, he would go for the toilet; but he needed the counter to lay his arms on because it held up his body weight. Tuesday night was worse than Monday night. He cried in pain all night long and the pain was so severe it was making him throw up even more. He wasn’t necessarily nauseous it’s just that the pain was so intense that it was making him sick. We were up all night long again. I was moving pillows, adjusting him, helping him move from bed to lazy boy and back and forth. He was desperate to get out of pain. I had never seen anything like this.

By Wednesday morning Richard was so desperate to get out of pain he decided to get in a hot bath. He pretty much crawled to the bathtub. I suggested he not get in as I was concerned about how he would get out; we have a sunken tub. After soaking in the bath he wanted to get out but he was stuck. I could not lift him out and he couldn't even help me lift him anymore. I told him I was going to call 911. He didn't want me to until he was at least out of the bath and dressed. He was slightly frustrated and he army crawled himself out of the bath. By now he was completely paralyzed in his lower body area, he was dead weight and was stuck lying on the floor in our bedroom now so I called 911. When the paramedics got there, they kept asking if he usually had such a low heart rate. They took him by ambulance back to the hospital and they told me to just wait a couple minutes and follow behind in my car.

Right then my phone rang. It was my dear friend Lori who runs the office at my podiatrist office, Dr. Katz. She called to tell me that my orthotics were ready and wanted to know if I could come in and she would explain how to break them in. I told her that I was going to the ER with Richard and that I would have to call her back after things settled. She was concerned so she probed and wanted to know what was going on with him, “what are his symptoms?” she asked me. After explaining to her what been happening the past 2 days, she said to me: “Kelly, now I am not a Doctor, but I really feel strongly that you need to go down there and ask the Doctor to check Richard for Guillian Barre Syndrome, you really should hurry” I asked her; “What is Guillian Barre Syndrome?” I had never heard of it before. She spelled it for me, and insisted that I please ask and if I didn’t think it was, to at least rule it out. I wrote it down, we said our good-byes, I grabbed my lap top and went to the hospital.

In the time it took to wait for the Dr. to come see Richard, I had completely read the Wikipedia and Mayo Clinic’s explanation of Guillian Barre Syndrome while sitting next to him in the bed. I was completely floored when I read it because I couldn’t believe it. I knew Lori had nailed it. He had all the symptoms to a “T”. He had paralysis that started low and ascended, difficulty in swallowing, bladder disfunction, deep aching pain (“similar to that from over exercising”) which explains the misdiagnosis of Myalga, absence of fever, and a low heart rate. The “absence of reflexes” was the only symptom left that I didn’t know if he had. When the Dr. came in I immediately asked him to check Richard for Guillain Barre Syndrome. He didn’t entertain my suggestion too quick, and didn’t respond to me or ask my anything, he just kind of gave me the “you’re not the Dr. stare” but in a nicer way than the other Dr. from the night before. But then I saw him sitting at the computer reading non stop for about 20 minutes. He came back and started “hammering” Richard’s knees and elbows trying to get a reflex. I knew now, without communication from the Dr., that they were finally listening to us because the absence of reflexes was the only symptom left that was unconfirmed. He tried and tried and tried over and over again to get a reflex and when he couldn’t he didn’t say anything and just walked away. I immediately put my face in my hands and tried not to cry but couldn’t succeed. I didn’t need an official diagnosis anymore, I knew what I knew. I lived with him for the past 3 days and none of those Dr.’s had. The next face I saw was that of a neurologist. She didn’t say anything yet, but went right for his knees also, then his elbows---nothing. No reflexes.

The neurologist immediately wanted to do a spinal tap. I knew this was coming because I read about it. This is how they diagnose Guillian Barre Syndrome. Richard said “No” to the spinal tap and I said “Yes” to the spinal tap. Richard said “No” again and I said “Yes” again. The neurologist said, “Listen to your wife, you have to do this.” She and I explained to Richard everything that we both had discovered about his condition in the past hour that he laid there in agony and he understood now and agreed to get the spinal tap. The results came almost immediately, probably within 30 minutes and she confirmed it with us, admitted him into the ICU and ordered plasmapherisis blood transfusion treatments for the next few days. They gave him a central line and waited for the special machine that was brought in from a different location. It was obvious that the nurses hadn’t seen it there before because when it got there they were all coming by and asking lots of questions.

For the next week while in the ICU, Richard continued to get worse until it had affected his hands, (he couldn’t even push the nurse button anymore), his facial muscles had gone and he couldn’t smile, his speech, and then finally his eye sight. His eye sight was the last to be affected and the first to come back. Then his speech started getting better the next day, and each day after. There were a couple of days when he would use every bit of energy he had to say 2 words to me (usually asking me to do something that would help him get out of pain) and I couldn’t understand what he was saying. It was pretty quick after that when he hit a plateau and started to improve a little tiny bit each day. It started with his eyes and then his speech. Then his fingers started working a little better. Finally, half of his smile started coming back. He has some use of his hands now and can actually use his cell phone on speaker for a minute at a time.

The other day I was trying to take care of unfinished items on Richard’s to do list. I noticed all the items that were crossed off and the only one that wasn’t crossed off was “Passport” and right below the note paper was his passport application. I was telling the neurologist about our plans to go to Machu Picchu and she thought we should aim to try and go, but I think that was before I told her that we were hiking for 5 days and 25 miles, and not taking the train. I don’t want to be negative but it just doesn’t seem realistic and I don’t want Richard to have goals that are not attainable and then be let down when he doesn’t achieve them. We’ll see how he does these next few weeks. Honestly though, I don’t see him coming home for Christmas, that would be an absolute miracle. (He did come home for Christmas on a day pass, see him in the background in the recliner on the right.)