Ralph was in the hospital for six days after his bowel resection surgery. I spent nearly all my free time at the hospital with him. He had some minor complications, but after six days, they discharged him (a day earlier than predicted).
After his discharge, I spent all of my free time taking care of him. Although he was a model patient, I found myself impatient, grumbling inwardly, and sometimes bewildered and frustrated at my own negative attitude. And tired. I had to help him with everything. If he dropped something, he couldn’t pick it up. He couldn’t get his own food. He needed help with the shower and getting dressed. But he had survived, and I was grateful that he was home with us.
Still, the specter of cancer hung over our lives. At the hospital, we asked if they had the results of the biopsy. Probably Monday, they said. On Tuesday, the day of discharge, we asked again. It can take up to a week, they said. So we went home, not knowing, although the surgeon, Dr. Hyatt, had told us bluntly that it was cancer.
On Friday, Ralph called the surgeon’s office again about the biopsy. “The tumor was benign,” the nurse said. “Well, what was the tumor?” “I don’t know, I don’t have my notes with me.”
The tumor was benign. Good news! Wonderful news! Now all we had to worry about was recovery. Ralph still felt like he had been run over by a truck, but at least it wasn’t cancer.
About three weeks into recovery, Ralph woke me up at 4:00 a.m. “I can’t breathe when I am laying down,” he said. “When I get up and walk around, it’s better. Maybe I have a cold. I can’t breathe through my nose when I am laying down.”
It’s probably a cold, I thought, and went back to sleep for a few hours. He got up and sat in his chair.
When I got up, we began discussing his symptoms again. I decided that I was going to go to the store and get some medicine for his cold symptoms, instead of going to church. Then he said, “Would you put some more pillows behind my back so that I can breathe better?”
“I think we should call the doctor.”
“The doctor’s office is closed.”
“They have an answering service. There is always a doctor on call. I think we need some advice.”
I told the answering service Ralph was having trouble breathing through his nose, especially when lying down, and we thought it was a cold, but we weren’t sure. She said she would have a nurse call us back.
The nurse called us back, and I put the phone on speaker so Ralph could take part in the conversation.
“Ralph is having trouble breathing through his nose when he lies down. We think it’s a cold, but we’re not sure. When lies down, he can’t stand it. He gets up gasping. He says it’s better when he walks around,” I said. “I think you should know that he is recovering from major surgery. He had small bowel resection three weeks ago.”
“You should call 911 and have Ralph taken to the hospital by ambulance,” said the nurse.
“My wife can take me to the hospital. It’s only four miles away. It would take us 10 minutes,” said Ralph.
“With your history of recent surgery, I am concerned that you may have an embolism in the lung. If your wife takes you to the hospital and you have problems, she won’t be able to help you,” said the nurse. “You need to call 911 and go to the hospital. Besides, if you go the hospital in the ambulance, they take you right to a room. You won’t have to check in.”
I called 911. The EMTs arrived about the same time as the ambulance. They started asking questions, and Ralph’s condition didn’t seem serious to them. They looked at each other as if to say…why are we here. I wondered if we were wasting money on a non-emergency. They put took his vitals, and got him ready for the ambulance.
They asked me if I wanted to ride in the ambulance. “No,” I said, “I’ll take my car and follow you.” I wanted to be able to drive myself to the hospital and home from the hospital. I thought, again, that this was going to be a visit to the emergency room, a discharge from there, and back home again. If I rode in the ambulance, I wouldn’t have a way to get him home. That is, I would have to depend on other people to help me.
I took my crochet bag, my Kindle, and this time, some Kleenex.
I followed the ambulance to the hospital. They took him in with no apparent sense of urgency. After the initial evaluation, hook up to an IV, blood pressure cuff, oxygen saturation monitor, and oxygen, they left us alone for a few minutes. Ralph looked at me, “I started breathing better in the ambulance. My nose isn’t stuffed any more.” “Maybe it’s the oxygen,” I said.
Doctors and nurses came in and out. Listened to his heart, his lungs, took his blood, asked him again and again to give his name and his date of birth. Then they scanned his wrist, and whatever product they were giving to him or taking from him.
About an hour into the visit, Ralph began having trouble breathing. “I have to sit up,” he said. “I can’t breathe.” I helped him sit up, and pushed the call light. I wanted to rush out and call for help, but I had all I could do to help him sit up so he could breathe. A nurse came running in. (Those monitors are more effective than a call button). He turned up the oxygen, and helped Ralph sit up and helped him calm down. After Ralph was able to breathe more comfortably, they moved the incline of the bed higher. I was glad then, that we had called an ambulance. I would not have been able to handle that.
A parade of doctors, nurses, a respiratory therapist came in and out of the room. This visit is getting longer, I thought. Every doctor who came in looked at his legs. “How long have your legs been swollen like this?” “His legs are normally somewhat swollen,” I said, “but it’s been getting worse since he came home from the hospital.”
Finally, one of the doctors said, “We are going to admit you. You have pneumonia deep in your lungs.”
Ralph was in the hospital this time for six more days. He saw many different kinds of doctors during this visit: family medicine, gastroenterologists, hematologists, urologists, and hospitalists. He had very strong antibiotics for his pneumonia, and he was dependent on oxygen for five days. Ralph said they told him they were trying to figure out what was going on with him. He had an echo-cardiogram the second day. His hemoglobin dropped during his hospital stay. He had a urethral stricture, for which he had surgery while in the hospital.
On the day he was discharged, he received six bottles of medicine and vitamins. But no answers. Also, he would receive at-home visits from nurses, physical therapy, and occupational therapy. They have been very helpful, and it has given me some peace of mind that we are getting help with his recovery.
About a week later, I took Ralph to our primary care physician, Dr. Scott. At that visit, he told us that the echo-cardiogram had showed pulmonary hypertension and cardiomyopathy. On the list also were essential thrombocythemia (a preexisting condition), hypertension (this has developed in the last year), anemia, chronic fatigue syndrome, congestive heart failure, and stasis ulcer (one of his old leg ulcers opened back up due to the extreme edema while in the hospital). Ralph has a visit to a cardiologist, bone marrow biopsy, sleep study, and other tests in his future. We don’t know the level of disease, but I do know the Internet is not a good place for me to dwell. We’ll wait for additional test results and professional opinions.
Cancer gets the bad press, but it is not always the worst of news. This may be worse. But we don’t know.
Ann Kilter said:
I know that this blog is about autism and transitioning to adulthood for our adult children with an autism diagnosis. But this series of events has caused us to change our minds about decisions we had previously made and brought renewed urgency to other issues. In future posts, I’ll be dealing with those issues.
Ann Kilter said:
I look back at the sequence of events, and think, how could I be so stupid. But when you are in the situation, you don’t always think clearly or know what symptoms are significant. I have minimal medical back ground. Thank God for nurses and doctors.
Ann–SO sorry all this is happening! I am a 3- time Lymphoma survivor…so understand how your life has changed in a moment’s time! Will pray for you & Ralph & family…much love, Carole
Sent from my iPhone
Ann Kilter said:
Thank you for your encouraging words. You sure are right. My priorities have shifted dramatically. Much of what was important in my life now seems trivial in the light of my reality.
I am so sorry 😦 I don’t have a medical background either, but I know what edema is, and I know it’s not usually a *good* sign. Sending you thoughts and prayers, as always *hugs*
Ann Kilter said:
Thank you so much. I am thankful that warning bells started to go off in my brain regarding the breathing issues. I am a legal secretary in a workers’ comp firm and I type medical terms all the time. But when faced with actual events, their meaning becomes much more real…not so academic.
TLC Nielsen said:
Hang in there, Ann. Keep writing, especially of the God glimpses in the midst of all of it. You two are still together, blessing #1. Please take care of yourself, holding onto the two greatest commandments (love God, love others as yourself). Will pray for you!
Ann Kilter said:
Thank you for your prayers. My blessing of 29 years is still with me, recovering on the couch. Learning the meaning of serving.
I wish you and Ralph all the best. Given my older son’s condition, I know what it’s like to go through lots of hospital time and still not have definitive answers. Be sure to take good care of yourself, too.
Ann Kilter said:
Thank you. You are right. It’s hard to be patient when the one you love is suffering. Just coming up for breath here. Starting to think about myself.
Lilka Raphael said:
The prayers continue for all of you. You have weathered many “storms” and you will this one as well. Peace to you!