A Protracted Illness: Challenges for the Family_Part 1

“How long O’ Lord, How long, will you forget me forever?” Psalm 13:1 had become a recurring prayer I offered to the Lord. I was walking the halls of the National Institutes of Health Clinical Center in Bethesda, MD hundreds of miles from home, separated from family and friends. The staff with whom I interacted was pleasant, helpful, and concerned about my wife, but I was alone in this distant place. The hotel staff at the Bethesda Marriott was sensitive and most helpful and understood my plight since many other families had stayed there during visits to the NIH. As I walked the halls that Friday, the rush of people was over and the building mostly quiet and empty. I was tired, no, I was weary. I had never known weariness before, but it was now a regular companion as I accompanied my wife now in our third year of her illness. Yes, it was OUR third year, and it was OUR illness. My body wasn’t sick, but my body was weary, my mind was so tired, my emotions were almost completely numb, and my spirit flagged between highs and lows never knowing what we would face next or how long this trek might ultimately last.

The History:   We were both in our mid-fifties, physically active, and in colloquial terms, “healthy as a horse.” I had experienced kidney stones half a dozen times, one taking six weeks to positively; unequivocally determine that it was a kidney stone causing my symptoms. That was a personal nightmare. My wife, Gini, had experienced childbirth six times and the last one culminated in postpartum depression that was not identified nor diagnosed by anyone. Two of our children had mononucleosis or a similar virus, but that usually lasts two to three months and recovery begins. We had a few broken bones, and I had several athletic injuries. Generally, we had been quite a healthy family to number eight.

Our trek with protracted illness began rather quietly when my wife was diagnosed with hypertension during an appointment with her primary care doctor to have a mole removed and examined in early February 2009. During the visit, her blood pressure was abnormally high with no underlying cause evident including family history that might explain it. About three weeks later, my wife’s mother had a significant stroke and that began a five month run of trips to Miss. where they lived. This further confused the diagnosis of her hypertension because of the stress she carried while working with her sisters to serve her parents’ needs. Since stress is a known factor in hypertension, we assumed that some of her blood pressure spikes were caused by this added stress. As the doctor tried diligently to manage Gini’s hypertension, we also learned that she had or could develop a drug intolerance in two to three weeks after starting a new medication for the hypertension. This further delayed the diagnosis by confusing both doctor and patient.

By the end of the summer, Gini began to experience unexplained weight gain. This started rather slowly, and she responded by managing her eating both in content and quantity. By October of 2009, her appearance had begun to change with the additional weight, but she was still exercising and managing her eating yet still gaining weight. This pattern continued until late in 2009, we requested a referral to a specialist; a nephrologist was our next doctor. Gini met her in early 2010 and without so much as an examination, the doctor stated, “You have Cushing’s.” Cushing’s syndrome is caused by an adenoma in an adrenal gland or Cushing’s disease a micro-adenoma in the pituitary gland. Tests including an MRI proved the diagnosis correct and a referral to a local surgeon was our next stop. By this time, Cushing’s syndrome was confirmed as the cause of Gini’s hypertension. The surgeon stated that her body was in a state as though he had been giving her 100 mg injections of cortisone daily for a year. She was miserable and her body was in full rebellion to this overdose of cortisol, the naturally occurring form of cortisone in the body. He worked on his calendar and scheduled Gini for arthroscopic-robotic surgery two weeks later. One of the problems we were facing was a spike in blood pressure that caused headaches. Two days before her scheduled surgery, her blood pressure hit 200/150 and she had a headache would not subside even with prescription pain medication. We went to the hospital two days early so that she could get some relief from the pain. All went well and her left adrenal gland was removed April 2, 2010 and an adenoma identified inside the gland.

Gini entered her recovery stage almost immediately and in a matter of weeks she was exercising steadily again. Three weeks later we were in Miss. to visit my Dad in the hospital with pneumonia at age 85. This began a six and half month walk with Dad, Mom, and my sister through his illness and passing into heaven. I traveled back and forth to Miss. about every third week, and Gini stayed at home except during April and October. Sometime in July, I mentally noted that she seemed to hit a plateau in her recovery. By September and October, she was in regression, gaining weight, tiring easily, getting short of breath at times, but with medication her blood pressure was far lower than in 2009. Her symptoms became so bad that we again sought a specialist, an endocrinologist this time. He was a godsend; he spent 40 minutes with us during the first appointment reviewing her records and asking questions. He was an older doctor with an Aussie accent and gentle way. I say again, He was a godsend. We left very encouraged, and with a plan to get a diagnosis quickly. Cushing’s was confirmed once again but it was unclear whether or not it was the syndrome or the disease. At this point, we were referred to the university hospital in Little Rock, Ark., University of Arkansas for Medical Sciences.

The doctor and team there took charge and within a few weeks had confirmed pituitary involvement. With this diagnosis, the doctor said he wanted to refer Gini to a doctor at the NIH, National Institutes of Health in Bethesda, MD. We were stunned; we had assumed that all treatment would be done in Little Rock, but began to seek additional counsel and on May 8, 2011 Gini was admitted to the NIH. After a week of tests, her pituitary surgery was performed on May 16 and successfully removed a micro-adenoma. Four days later, Gini was in a crisis in ICU—pulmonary embolus, an infection, low blood pressure, and low oxygen saturation. By mid-afternoon, she was stable. However, the physical crisis had ramifications that added another 1 ½ weeks to our stay in Bethesda. After four weeks at the NIH, Gini was permitted to return home. The next two weeks would see anything but recovery. Our hopes seemed shattered as we had a fair day and then a very difficult day. Gini could not eat because of an unexplained nausea that had been coming off and on since leaving the ICU at NIH. Tests were run before discharge, but no single factor seemed to be the culprit that hindered her eating.

Once at home with a hospital bed in the living room, an oxygen generator running day and night, and visits by nurses and therapists, our life was quite chaotic. Even though the surgery cured her of Cushing’s, the surgeon’s words, her recovery would take more than a year. I thought the days at the NIH were long, but the weeks following our return were truly taxing. We did have a nice surprise when we arrived home; Michael, Christopher, Danielle, and Karen were home to meet us and visit a few hours. I noticed that our 22 year-old daughter that had faced many struggles of her own was the first to step in a serve her Mother. That was a relief to me after such a long day of travel. She helped Gini change clothes and clean up to go to bed and simply made sure Gini was as comfortable as she could be. Then the challenge of up and downhill recovery began. After the three from Jonesboro returned to school and work, I was on my own. The first week or two was fairly busy with the nurses and therapists coming by for intake and initial planning. Their pleasant attitude certainly helped me, but after a couple of weeks, the routine of not having a routine began to wear on me. I was used to having a fairly steady schedule but did not consider myself rigid in my adherence to it. Before long, I was not able to give answers to questions about plans even two weeks out. I simply did not know what one day would require of me and felt like I had NO control over my life. I guess we never truly do, but we at least have a level of comfort in life as we move through regular activities.

The Cushing’s had caused sleeplessness, weight gain, osteoporosis, limited ability to eat, low oxygen saturation, weakness in the legs, memory loss, and perhaps some I don’t remember. After we were home, the oxygen generator had to run 24/7 to keep Gini supplied with the necessary saturation level. We had a 50’ line installed so she could get around the living room and to the bathroom across the hall. With the weakness in her legs and osteoporosis, fall danger was a concern all day every day. I felt like I needed to be with Gini when she moved from bed to chair to bathroom. I genuinely worried about her falling and putting us in an “all bets are off” situation after a fall and broken bone(s) and our life would be complicated by a factor of 10. Food did not taste good to her and often I would have to prepare 3 meals for morning, noon, or night to find something she could literally stomach. Some days that was very frustrating and I would complain to the Lord about wasting food just to satisfy her. I only prepared what she requested so when she refused it that was particularly frustrating. There was nothing she or I could do to resolve this part of recovery.

Because of the danger of a fall and the resulting injury, surgery, and recovery, I felt I needed to be near Gini when she moved from bed to chair to bathroom, etc. We had an audio monitor sitting beside her so I could hear her moving or calling me with minimum effort on her part. She wanted to give me a break at times and would not tell me she needed to move or go to the bathroom. She would make her move without calling me and that only served to frustrate me because of the danger of falling. It was a vicious cycle of trying to manage her and Gini wanting to give me some relief. I guess she sensed that as a full-time caregiver I needed a break. With all we were facing, I would not take a break unless I truly needed to get away for a short time. Michael, our son, was back home after losing a job and spent hours each day searching for full-time employment with benefits. Occasionally, I would ask him to manage Gini for a day so I could get out. At times, I would go to the office knowing that I would have trouble focusing on details or long term projects. I just needed to leave the house.

By the second Thanksgiving of her illness and recovery, Thanksgiving 2011, she was beginning to show some significant signs of recovery. We were not “out of the woods” by any means, but progress was being made although the slow pace made me weary all over again. I had returned to work full-time in September and only took occasional days off to help Gini or give our son Michael some relief so he could be at a job interview. I should add that had Michael not been home seeking new employment, I don’t think I could have survived these two and a half years. God brought him home just when I needed him toward the end of 2010 just before my Dad’s death.

As Gini’s physical health improved, other issues began to arise that caused conflicts between us. I will share more about those issues and events in a subsequent article.

In the early weeks and growing symptoms of Cushing’s syndrome, the hypertension was of greatest concern, particularly the spikes in Gini’s blood pressure. Even though we were told that she was not at risk for a stroke, I never became comfortable with those words. Often, though on medication, she would have to retire to the bedroom, turn all the lights out, eliminate as much noise as possible, really any sounds, and lay down to allow her blood pressure to return to a new normal; it was always above normal. She literally could not handle any unusual stress. After a few weeks in 2009, Gini who normally slept eight hours each night suddenly began to sleep only two hours per night. Now I get by quite well on six to six and a half hours per night and can make it through a day on less, but here she was up after two hours awake so stimulated that she would have to leave the bedroom. Some nights I could hear her working in the kitchen and then awake to see what all the ruckus was. Gini was cleaning the kitchen, pulling things out of cabinets and drawers to clean and replace them. However, it was not carefully done and she was moving at twice her normal speed working in the kitchen. It was often difficult for me to get back to sleep and get the rest I needed for a day in the office. This was the first of our challenges, destruction of our sleep cycles, as the Cushing’s intruded into our lives further with each passing month. As this became a greater problem in our lives, Gini consulted with our primary care physician and he prescribed Ambien and later Xanax to help her control her energy that pushed her body with little sleep.

I can remember the first sympathetic symptoms I had with or for Gini. She would awake and need to take more Ambien to get back to sleep. I would lie in bed awake while she would be able to go back to sleep with the help of the medication. At one point, our doctor asked how many Ambien she was taking. She replied, I have to take three each night to get 6 hours of sleep. He responded, “That’s enough to put the entire county to sleep.” I prayed at times and just trusted the Lord to provide either the sleep or the strength I needed to get through a day of work. It was quite an unusual experience to be awake simply because your spouse was awake. I am not sure how long this lasted, but we finally decided that she should sleep in the spare bedroom so that I could rest and leave in the morning without waking her at 5 AM when I often left for work. Even after surgery in April of 2010, she had to remain on Ambien to sleep through the night until her cortisol levels returned to normal. In all, there might have been five months between surgeries when we shared a bedroom.

I know some reading this can relate and some may even be thinking, “three years, that’s all; I been at this for a decade (or longer).” I understand that reality but as I share my challenges in the next article, perhaps more of you will know and understand that God took me a short time to the place you have lived for a long time. I want to help; that is my single goal.

Many spouses and families pass through a time of protracted illness; that is a fact. How a lengthy illness will affect you the spouse and your family is my primary concern. I hope in sharing our ordeal, and what we have experienced and learned will help or encourage you should you travel a similar path in life. I realize in this article I have only shared the historical part of this protracted illness. I will share more about my personal struggles and our difficulties as we awaited recovery to begin.

(Copyright Living: Marriage, Family, Relationships and Mike Pickle original 2016; no portion of this may be reproduced for distribution—copied, printed, faxed, digitized—without expressed permission.)

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