My name is Elizabeth, I am 52 years old, and I am from Fairfield, CT. My journey with Guillan Barre has really only begun. My nightmare started on December 4th, …..really, I guess it started on December 1st when I had my long anticipated, much desired hip replacement surgery. I have had bone on bone arthritis in my right hip for years. Last March, I was diagnosed with Rheumatoid Arthritis, and my orthopedist thinks that sped up the destruction of my hip. It was collapsing, my leg was shorter than the other, and I was in pain 24/7…level 9-10.
Before GBS- my husband and I at the Make a Wish gala
My surgery was a success, my doctor said it was even worse than we had thought. I felt better immediately, and did so well, I went home the next day, Friday. I could even do stairs! I was ecstatic, virtually pain free.
Sunday morning I woke to some pins and needles in my hands and feet, and didn’t feel great. My husband and I attributed it to surgery, sleeping on my back—you have to in order to keep your hip at a correct angle. As the day progressed, and I felt worse, we thought maybe a drug reaction—ambien/oxycodone—things I was not used to.
At about 6pm, I needed to go to the bathroom and was feeling really awful. My husband was behind me and I had my walker. After I was done, I literally could not get myself off the toilet—even with the raised one we had. My husband helped me, and we started out of the bathroom. My legs gave, and we still do not know how, but somehow we caught me and I didn’t go down. All I could think was do not mess up my hip! We got me over to the bed, sat down, and just looked at each other and we agreed, I needed to go to the ER, and since there was no way I could get down the stairs, we had to call 911.
I had my first ever ambulance ride, went to the ER…and that began a 48 day stay in the hospital and rehabs. It was the last time I walked.
I had multiple tests…it’s all a blur. I was told later, I was very lucky, because the neurologist on call that night specializes in the ‘weird’, and he immediately thought Guillain Barre.
By Tuesday, 12/6/16, after many MRI’s and a lumbar puncture, among other tests, it was confirmed that I did have GBS. The doctors think it was triggered by my surgery. I started IVIG that day. One a day, for 5 days. After learning more about GBS, we realized how lucky I was. It basically was knees down and elbows down, it affected my taste buds, big time, and my blood pressure sky rocketed. I had buzzing all over at times, but zero feeling in my feet which were swollen blocks of ice. My hands were major pins and needles, but I could use them. No feeling really, but at least I could feed myself….like a toddler, but at least I could. I I didn’t pay attention and I was holding something, I would drop it…and still do sometimes. Swallow tests were good, thankfully. I was totally miserable, dehydrated because even water tasted like crap, barely eating…you just cannot live on bananas, oatmeal, sweet potatoes and chocolate pudding alone. Those were the only foods I could tolerate. My back was killing me, I could not move my body easily, and let’s remember, I also just had major surgery and a brand spanking new titanium hip. We had to be very careful rolling me…and I told everyone that if my hip dislocated, whoever did it was going right to hell with me! I was barely sleeping. It was definitely the worst I have ever felt in my life.
I was accepted to go to Yale New Haven Acute Rehab in Milford Hospital in Milford CT after my IVIG was done. I was thrilled—great reputation and I’d have 3 hours of intense therapy a day. They moved me Sunday, one week exactly after I went into the hospital. It is a small acute rehab, and I had a big private room. The dietician listened to me about food and drink, and adjusted as much as she could and got me on Ensure. The doctor changed my sleeping pills, added a pain med and a lidocaine patch on my back at night. They got me on gabapentin too….and I finally started sleeping! I still felt like crap, but at least started feeling human…plus I could be in my own clothes.
Much of my rehab is a blur…days rolled into one another. Slowly, my strength began to improve, my taste slowly started coming back. One of the real highlights is that they allowed my dog to visit. My husband brought Brodie almost every day…and the entire staff, and other patients, all loved seeing him. We would pack pillows around my legs, because touching them felt like awful electric shocks and burns, and he would jump on me and lay across me. It was worth the pain.
About a week into my stay at rehab, it was time to take the staples out of my incision from surgery. A day later, one of my favorite nurses was concerned about fluid discharging from my incision….and sure enough, I had a hospital borne infection…and a bad one…pseudomonas. So, that began a six week run of two different IV antibiotics. I had to have a pic line put in, which actually was good because I am a hard stick, and had bruises all over my hands and arms from the nurses trying to find veins to draw blood. They did a cat scan and it showed a pocket of fluid in my hip, but not near the prosthetic, which was good news. The bad news was that the hospitalist wanted to discharge me, bring me back to Bridgeport Hospital, so that my surgeon could see me. This was two days before Christmas. I strongly disagreed and fought them, and so they had an ambulance take me to my surgeons office, where he saw me and said he was not concerned, and that it was not unusual to have a pocket of fluid, and that he felt the antibiotics would take care of it. Phew!
sorry about my dogs eyes- Christmas in rehab
Sadly, I could not stay at the acute rehab for more than thirty days, and I got moved to the Grimes Center in New Haven. Everyone was very nice, but it was dreary and I got far less therapy, though the therapists were great. Too many people and too few aids, nurses and therapists. And I had a roommate…and older woman with dementia and a stroke, she yelled all the time and smelled. My husband decided that it was time for me to come home…so we targeted a day, and he got the house ready…stair lifts installed was the primary thing, and moving some furniture. We got a sliding shower stool, and a few other things. Meanwhile, I graduated to using the commode, and was standing more.
The big day came, and we had a wheelchair van come to bring me home. It was scary to leave the safe rehab, but oh, so good to be home with my husband and dog. Sleeping through the night! What a treat!
I still had the IV and Pic line, so a nurse came to teach us what to do. After five days, I was finally done with that and the nurse came back and took the pic line out! Freedom!
I think that just by being home, eating well, doing my green smoothies, taking my supplements, actually getting solid rest, not just a few hours here and a few hours there, I started to heal more. I also think that I was forced to figure out how to do things and just start trying. I had a zillion Christmas presents I had bought well before my surgery, that needed to be wrapped, and many mailed. I hired an aid to come 5 hours a day and Lorraine has been a lifesaver, and probably a marriage saver. She helps me shower and dress, though I need less and less help with that—I still cannot shower alone. She does our laundry, changes the sheets on the bed, cooks when we need it, helps with my therapy…really whatever needs to be done.
I am walking with the walker sometimes, as long as someone is with me. I can now stand to pull my pants down and stand to pull them up! I can go to the bathroom like a real person and it no longer exhausts me to get myself dressed again. If I could do a happy dance, I would! I can stand and pivot and get into the Jeep. I can almost get my shoes on…and that is mostly due to not being able to bend because of my hip. I am typing again, not well, but doing it. I can blow dry my hair, only bonking myself on the head a few times with the hair dryer. I still have major neuropathy in my hands and feet, and I still have a long way to go. My Rheumatoid Arthritis has my ankles totally swollen and I cannot go back on a biologic due to the neuropathy, so we are trying a drug called Arava. I have tapered off prednisone, which I have been on for a year due to RA, and starting to take weight off that I need to take off.
I am also blessed to work for a wonderful company, and I work from home. They not only paid me while out for two months, they sent gift cards to my husband to a place that delivers all the ingredients for a meal. Melinda, the owner, said he shouldn’t have to worry about what to cook. She called me often but never spoke of work, it was all about me. I was told my job was mine and waiting for me. The love and support from them for me and my husband has been amazing. I have great friends that have been there for me, my family has been amazing….my sister in law has done so much. I am very lucky.
I started back to working a couple of weeks into my return home, a few hours a day, and it’s morphed back into full time. But flexible time so when I have therapy ( still in home ), I can do it. If I need to rest, I say so. The owner, my boss, has made it very clear she wants me well so we are all in it for the long haul.
My husband has been a rock. I know he’s getting tired of being the caretaker. Before surgery, he already had to cook most nights because by the end of the day, I’d just be so exhausted from pain. But I still took care of the dog, fed him, took him to play ball in the mornings. Now, everything falls on my husbands shoulders, including getting me breakfast and cooking dinner, and cleaning up. He’s stressed and tired, and gets pretty crabby with me. I just remind myself how much is on his shoulders. We’ve had a couple of blow ups….he got nasty one day and I just blasted him back, saying we hired Lorraine ( my aid ) so that he doesn’t have to do a lot, that I am trying to do as much as I can myself, and not once has he said thanks for trying to lighten the load. I asked him how he thought it felt to be totally dependent on someone that yells at you all the time. He apologized….and we are fine—sometimes you just need a blow up to clear the air. He has really gone above and beyond for me, and I could not do this without him.
The reason I write about my husband and I and how all this affects a relationship is because it’s the reality, and we as the dependent ones have to realize how much stress this is on our loved ones and caretakers. All of a sudden doing things they haven’t had to do….taking care of everything. We are lucky, because my company paid me. In many cases, the primary breadwinner is suddenly incapacitated for a length of time, and the caretaker also has to deal with bills and insurance, on top of physically caring for their loved one. It’s a tangled nightmare.
This disease takes so much from us. I have a triple whammy, with having had total hip replacement that I have not been able to rehabilitate, rheumatoid arthritis that is flaring, and Guillain Barre that paralyzed my legs, and major neuropathy still in my hands and feet. I continue to improve, and I definitely will be with the walker almost exclusively soon. I try to do new things often, and am usually successful. I have been toold by numerous people that my attitude is amazing and they don’t know how I remain so positive all the time. I have had my moments and melt downs, don’t get me wrong, but my answer is that I don’t really see any other option than to be positive. Failure is not an option so I have to move forward, as slowly as it is, I still progress. And humor helps me get through things. I am into my 14th week…my holidays were spent at the rehab in Milford. Winter is almost over and I am still wheelchair bound. I don’t know if my neuropathy will go away. I have an EMG on the 28th and that will tell us the extent of damage I still have.
this year at the Make a Wish gala
Let’s hope my luck holds and it’s just the myelin and then I can do another IVIG treatment. I am planning on gardening, taking my dog for walks, going for bike rides and going out on the boat with my husband…among many other things this spring and summer!
