The Mysterious Journey of Illness

The Mysterious Journey of My Husband’s Health – A documented account of symptoms, events, and a search for healing.

I’ve been keeping track since the beginning of my husband’s illness to follow the symptoms, and to help track the details for my own purposes. But I’ve chosen to make them available to those who’ve been curious, because I’ve often posted snippets with no great detail. I feel that those who have followed my journey, leaving words of encouragement and good wishes, deserve to know more if they so choose. I also hope that for those who are dealing with illness themselves or with a loved one, my journey may be of help, by learning how to have a voice and be proactive to get to the bottom of their own issues. But don’t be fooled. Every step is a process, and there is still waiting involved. The idea is to keep pushing to those next steps, rather than waiting endlessly until appointments, and hoping things sort themselves out, because they really don’t without a helping hand.

 

When it began:

We returned home from our beautiful 2-month winter vacation in Arizona. There happened to be one of the largest influenza epidemics going on in the state of Arizona, which we happened to dodge . . . until we flew home in a vacuum of germy people.

Approximately 3 days after our return, I was knocked down by this flu. It was like no other flu I’ve ever experienced, and I felt like I may very well die. This was no stomach flu. In fact, there was no nausea or urgent bathroom runs, merely a very high fever, dizziness, and my body felt like it had been beaten everywhere with a tire iron and then thrown down a few flights of stairs. I couldn’t stand up for more than a minute, and kept wrapped in a blanket for days. It then went into my chest.

My husband was knocked down with this flu a day after me. I couldn’t do much to help him, other than give him the same meds when I took them, and we remained on our respective couches for a few days. We drank lots of fluids, ate chicken soup when we could stomach it, and took gravol to quash the dizziness, which also makes one drowsy, so the long hours of sleep were helping to heal.

By day 6, I began to feel human again. It was Wednesday. But my husband didn’t appear to be getting better. I thought he was still weak because he’s quite a bit older than I am, and knowing how taxing the flu was on me, I thought it would take him longer to recover.

I noticed that he was pale, but then, so was I. Our skin, nicely tanned from the desert sun, no longer looked like we’d just come back from vacation. He was walking slow and unsteady, and using the walls for support when he walked. On Friday it didn’t seem that he was making any progress, and I noticed his ankles and feet were extremely swollen. I elevated his legs and rubbed them down. And I began to get quite suspicious about the swelling, his need to keep sleeping, and his slow progress in healing. I told him I wanted to take him to the hospital, but he, like most men, is very stubborn when it comes to going to hospital. My instincts alerted me there was something more going on that needed investigating.

The next day was Saturday. He just wanted to keep sleeping. “One more half hour,” he kept telling me, “And then I’ll get out of bed.” I kept checking on him while he slept, and after letting several more ‘half hours’ pass by, I shook him awake and told him I need to take him to the hospital. He told me he was going to get up and come eat something. I went into the kitchen to prepare some food, and five minutes later, I heard a loud thud.

My husband had tried to get out of bed, and his feet wouldn’t support him. He fell hard on the hardwood floor and just missed his head hitting the foot of the bed. He was conscious, but I could not lift him. I put a pillow under his head and called my step-son-in-law who works 5 minutes away to come over and help me get him to the hospital.

We waited in emerge for almost 4 hours until triage even asked his symptoms. Finally he was taken to a room in emerge and they took some blood work. In the meantime, they checked his vitals and hooked him up to a bag of saline. By 10pm that night, the attending doctor came in with blood results and told us that hubby’s hemoglobin count was at 52 instead of the normal 130-170 it should have been. They immediately gave him a blood transfusion, and the mission began to try to find where he could be losing blood from, as he wasn’t losing any externally. He was given a chest x-ray and a head scan. Nothing showed up, so I knew nothing was going to continue until Monday when he’d be assigned a doctor after being admitted to a room on Sunday. He would be seeing a gastroenterologist, and that meant no eating or drinking again for him until the doctor assessed him and decided what tests to give him. I kept asking the ER doctor why his feet were swollen, and that didn’t seem to be of major concern to him as it was to me. He said ‘could’ be from the low blood levels.

On Monday morning, my husband was scheduled for a gastro endoscopy. I went down with him to pre-op, then waited with him after they moved him to the operating room, waiting for the doctor I was told I could speak with before the scope. I had made a list of everything I wanted to let him know about my husband’s health history, hoping it would give him more to work with. I let Dr. B know that my husband was a prostrate cancer survivor of 5 years, and since that time he’d had ongoing issues with proctitis from extreme radiation for his Stage IV cancer, and was being treated at another hospital when symptoms of the rectal damage occasionally flared up. I also informed him that my husband had an issue our first 2 weeks in Arizona with on and off blood in his urine. I told him that I was in touch with his oncologist when this happened and he gave me instruction what to do and look for before we would have had to come back home from Arizona if it didn’t subside. And that he recommended I make an appointment with his urologist to have a kidney scan and cystoscopy upon our return from our trip. The appointment to see the urologist was booked for the Thursday of that week.

After giving all the pertinent information to Dr. B, I went off to the waiting room and waited till they called me into recovery. He had found some ulcers in the stomach, which were not bleeding, and said they may be silent bleeders, and put him on medication to heal bleeding ulcers just in case and told me he wants to scope him again in 6 weeks to check things out.

Later that day, Dr. B came back to visit and ordered another bag of blood and told me that he wanted to give my husband a colonoscopy to check his insides from the other end. I was concerned because he wasn’t in good shape to go through the prep process, and that he’d had a colonoscopy done only 6 months prior. I asked him once my husband’s blood levels became acceptable from the transfusions and he’d be released, if he’d let me take him for the colonoscopy to the doctor who does his rectal procedures from the radiation at the other hospital, since Dr. Y there has been looking after him in that department for a few years now. He agreed.

The next day, Tuesday, Dr. B released my husband with a prescription for some heavy duty iron pills to help keep building the blood up to optimal levels. Hub’s feet were still swollen, but he felt better and a bit stronger with enough blood in him to go home.

The night we got home, I was mortified to see how badly swollen his feet and legs were. They looked as though the skin couldn’t stretch any more. They were so hard and you couldn’t see a vein. Thankfully, his regular doctor is a friend of his. I phoned his cell phone to share my concern and he immediately ordered a prescription for a diuretic at my pharmacy. I ran out and got them, and he’d lost about 6 pounds of the 12 he gained from fluid retention while in the hospital by the next day.

On the Thursday, 2 days later, I took hub for his urologist appointment we had booked to check out the prior frontal bleeding issue. Dr. L ordered up an abdominal scan for the following week to check the kidneys and booked him for a cystoscopy later in April. The next day, I took hub to his regular doctor, Dr. M, to check his vitals and look at his swollen feet. He gave him a requisition to have blood taken the following week to keep a weekly check on the hemoglobin to make sure it was rising. He also said the water pill should help with the swelling in a few more days, and that the cause could be anything from being in bed so much to the hospital I.V. fluids. I wasn’t so convinced. I also had made an appointment with Dr. Y to do the colonoscopy on my husband, the following Tuesday.

As the weekend passed, I thought my husband was feeling a bit better each day. He was getting his colour back, and a touch of his sense of humour, although his legs and feet were still swollen.

Monday came and he began drinking the prep for the next day’s colonoscopy. I didn’t give him the evil one recommended, but the easier to digest one I use myself, and he got through the night okay. The next day I took him to the hospital for his scope. I went into the operating room to see Dr. Y and give her a heads up of what’s been going on with hub and why we were having the colonoscopy done for Dr. B, looking for bleeders.

My husband had last been to Dr. Y last November when he had an episode of rectal bleeding going on for too long, a symptom of the radiation of the prostrate so close to the rectum, leaving weak and damaged little veins that sometimes become irritated and bleeding occurs. She does a special procedure, which involves cauterization, which usually halts the bleeding for another year or so. Albeit, there is some bleeding which normally occurs about a day or so after the procedure, which can last for a day or two during bowel movements. But then he’s like new again.

We came home and hub rested. The day went calm. Wednesday all was quiet. Thursday my husband informed me that there was blood when he went to the bathroom. Before I panicked, I remembered that he sometimes goes through this after that procedure, but he wasn’t supposed to have a procedure, but a colonoscopy. A few hours later, he ran to the washroom again, and called me in to see the blood. There was quite a bit of blood, and I was most concerned about the fact that he already has a low hemoglobin and that they’re trying to find the cause of the ‘silent’ loss of blood, so losing any blood was not good for him. I kept a close eye on his colour and breathing. These were the indicators I had learned that meant he needed a blood transfusion.

The next day was Friday. He felt reasonably okay, and the day went without bleeding. In the evening, he had another episode of losing a lot of blood. I silently panicked, making up my mind that if this persists, I’m taking him back to the hospital.

Saturday came and there was another bloody episode. I tried to get hub to let me take him to the hospital to check things out and he insisted he didn’t want to sit in emerge again all weekend, Easter weekend. ‘We’ll go Monday’, he said.

Saturday night was calm until we went to bed at midnight. He ran to the washroom and once again called me to witness the now blood clots that came out of him. I was once again mortified at the sight and begged him to go to hospital. By then, it was 1am and we were both bone tired. He promised we could go in the morning. He had 2 more horrendous bleeding episodes in the wee hours of the morning. I couldn’t wait for morning.

In the morning we woke up, I was making breakfast. He came in to eat, his colour was reasonable considering how much blood he lost. He said he felt okay. I told him after breakfast we were off to the hospital. He took one bite of his toast and ran to the bathroom. As I poured the coffee, I called out the usual, “Are you okay?”

He answered his usual, “Ya.”

Another 5 minutes passed, as I paid close attention to the clock. I called out again, “Are you okay?” This time there was no response.

I ran to the bathroom and witnessed what looked like a CSI murder scene with my husband sitting upright on the toilet, white as a corpse, eyes closed, and unresponsive. I screamed his name and shook him to answer. There was still no response. I thought he was dead.

I called 911. They were there in minutes. And by then my husband had opened his eyes. His blood pressure was 70 over 20. We were back in emerge, with a room given to him within minutes. They pulled his prior records, tested his hemoglobin and within the hour he had been given another blood transfusion. The blood was coming in one end and coming out the other.

Monday morning after being moved to a room from emerge, Dr. B came in to visit. I was there from at 630am waiting. I gave him the low-down of events since the last hospital stay, and he told me that he had received the report from Dr. Y at the other hospital. He also told me that he had to give my husband another colonoscopy. I just about swallowed my heart.

Apparently, Dr. Y had only given hub a sigmoidoscopy, which only involves the lower bowel, not the whole colon. She also cauterized a few more damaged veins while in there. Dr. B needed to get in there and see the whole picture. I pleaded with him that my husband was too weak to go through that awful process again, and that he’d lose so much more blood going to bathroom during the prep because that’s all that was coming out of him and that he hadn’t eaten since Saturday night and now he’d have to starve another day and drink the dreaded hospital version of prep. He assured me that as much blood as he’d lose, he’d put back in with transfusion, and reiterated that it had to be done or he wouldn’t be able to see anything with all that blood in him. It was a nightmare.

The prep was to begin at 4pm. I called my sister and she told me to go home for 2 hours and rest, then pick her up and she’d stay with us through the night to be with him while he went through the prep. I unplugged his I.V. so he could get to the bathroom quicker, I stocked his room with lots of pullup diapers for the many changes of leaked blood, and by 11pm he fell asleep in sheer exhaustion. My sis and I went home. I couldn’t sleep worrying about him, and was back early again the next morning.

After the procedure, I anxiously awaited the results. The doctor came up and let me know that what they found was the result of the prior week’s procedure by Dr. Y. During the cauterization the rectum was damaged ( a known fact that can sometimes happen during the procedure), and had become ulcerated. One of the ulcers bled into a big vein and popped it, causing the blood to spray like a fountain continuously.

They clamped the vein and saved him from bleeding to death. Hub and I were so grateful we wanted to hug the doctor. Although, I was grateful, I stated to Dr. B that we still hadn’t found the original problem of hub mysteriously losing blood from the first time. I also voiced my concern with hub’s swollen legs and feet and asked him if he’d do us a favour and please order up the abdominal/kidney scan that he missed having from the urologist, as well as an echo heart scan that his regular doctor was trying to arrange. I wanted to make sure there wasn’t any fluid in his organs, and wanted to have it all done while he was in hospital, rather than schlepping him around to different hospitals. Dr. B accommodated my wish.

The next day, hub had the kidney scan, and Dr. B released him with an appointment to visit him in his office in a few days for scan results, and gave us a requisition to come back in a few days and have the heart scan as an outpatient because of the backlog. I was anxious for the scans because we hadn’t yet found any real reason for the initial blood loss from the first visit. Something had to show up.

 

A Little Backstory

Last spring during some regular blood testing, Dr. M, my hub’s regular doctor, noticed my husband’s blood work had come back showing an elevation in liver enzymes. He sent him to a specialist who had noticed that his hemoglobin was a bit low. He put hub on iron pills. We went back for testing a month later and the hemoglobin had gotten higher. The doctor suggested hub may have a ‘fatty liver’ but since the hemoglobin was going up and his regular doctor would keep regular check on those levels, if they didn’t drop again, everything was okay, and that was the end of the story. But never should have been.

 

Results

Last week, we went back to Dr. B for the results of the abdominal scan. He gave me a copy of the scan and ordered up more blood work; this time for everything to do with the liver. I informed him that my husband’s stomach was quite swollen, and he hadn’t lost much more than the 8 of the 20 pounds of liquid he was carrying since he came home from the last hospital visit. He pointed out to us that the kidneys were fine, but there was a lot of fluid in his stomach – hence, the severe bloating and swelling in his feet. He suggested we give the diuretics a few more weeks, or we may have to have his stomach drained by needle (paracentesis). Dr. B also found some liver problems that he needs to do tests for. He needs to find out exactly what the prognosis is: if it’s ‘fatty liver’, cirrhosis, or hepatitis, but something is going on. The scan had suggested cirrhosis and enlarged spleen. But there are many elements to be considered by blood work to pinpoint exactly what’s caused this, and a plan of action.

While awaiting the results of more blood work, I’ve been doing my own research. Many of these potential diagnosis can occur from diabetic patients, or those with high blood pressure, which my husband has both. From what I’ve read, any of the above listed potential liver diseases can cause FLUID IN THE STOMACH, SWOLLEN LEGS AND FEET, SHORTNESS OF BREATH, AND UNFOUND INTERNAL BLEEDING. I’m also thinking back to the elevated liver enzymes last year that weren’t followed up on and my pleas to every single doctor we’ve been to, as to why his feet and legs are so swollen. I just knew it was organ related.

I took hub for his heart scan a few days ago. The radiologist invited me to come into the room with him and stay and watch. I’m well versed in echo cardiagrams from having my own done annually –  the one test that saved my life by finding the silent tumour on my heart valve.

The radiologist was chatty, and was fascinated that I knew so much about what was on the screen. He was thorough, and went beyond looking at the heart and moved the wand around my husband’s stomach. He then asked me if my husband had had a flu recently. I was stunned. I told him yes and asked why he asked. He said he saw some remainder of viral infection. He also told me that there was no fluid around the heart, but there was a lot around the belly, near the lungs. And then he asked me if my husband had hepatitis or cirrhosis of the liver. I was floored! I told him we were just in the process of discovering what is wrong with him, hence the heart scan.

I was convinced that my husband had a problem with his liver. His illness began with the flu, which weakened his immune system, which brought underlying health issues to the forefront; issues I wasn’t aware existed.

These past few days, hub hasn’t lost another pound, even with heavy-duty diuretics. He’s very uncomfortable with his inflated stomach, and I prayed that he could just get through the weekend as comfortable as I could make him until Monday, when I could take him back to doctor to get all results back from Dr. M and I could schedule an appointment for him as an outpatient at hospital to drain his belly, so we could move forward with the next steps.

Monday April 11th

 

The weekend was hard on my husband with his distended stomach, swollen legs, and shortness of breath with any exertion. We went back to Dr. M for results of the blood work from the previous week. Before we went there, I called Dr. B’s  office to see if I could bring hub there, as we needed to get his stomach drained pronto! His secretary told me he was working in the hospital that day. I kindly asked her if she could message him, trying to push my way into booking him in for the procedure. She informed me she’ll get back to me.

We went to Dr. M, and I reiterated my hub’s symptoms, while he went over the results of the scan and blood work. He confirmed cirrhosis of the liver, but the other tests hadn’t come back with details, of what kind (there are 2 types), extent of damage, or next steps, all of which would be discussed at next week’s appointment at Dr. B’s office.

In the meantime, whatever the diagnosis was, the treatment was the same; which I’d already investigated to learn what we’d be up against. Because of mysterious blood loss internally, and tendency to build up fluids with this disease, hub would need to have his hemoglobin checked every few weeks to make sure his blood levels aren’t dropping, and if they do, he’ll have to go to hospital as an outpatient for a transfusion. If diuretics can’t keep up with fluid build up, he’ll most likely have to have the fluid drawn from the stomach when that occurs.

During the appointment, Dr. B’s secretary called me back. She told me Dr. B had received the echo heart scan results, and he was sending in a requisition for hub to have the draining procedure, after seeing how much fluid was around the lungs. I replied, “Sorry, I’m not waiting for the red tape to clear.” Then I proceeded to let her know that I know how the system works (or doesn’t work). I knew the requisition would have to pass a few channels, then they’d call with an appointment in a week or so. My husband would spontaneously combust by then! I told her I was taking him back to emerge and that maybe Dr. B could pop down there to speed along the process in emergency. Again she told me she’d call me back.

In the meantime, Dr. M agreed that I take him to emerge and get it done. I asked him for a referral letter to speed up the process. I did not want to start all over again from the beginning with ER nurses and doctors. I just wanted to get it done!

With all my paperwork in tow, we went to emerge. I presented the referral letter from Dr. M, which stated that my husband was Dr. B’s patient in that hospital and all his records were there for an ER doctor to look at. Surprisingly they put him in an ER room within the hour. A doctor came in, and I gave him a low-down on how we got there, and suggested he look at the scan results from Dr. B so he would be able to proceed with the procedure. All that time I was praying they wouldn’t admit him, let him wait all day until the next day for Dr. B to have to come and arrange it. The doctor was kind, and after taking more blood, told us he was going to drain hub right then and there.

I knew from my calculations and hub’s normal body weight that he was carrying 20 -23 pounds of water in his stomach and legs. The doctor informed me they would drain approximately 3 litres after doing another ultra sound to see where the water was congregating. It was quite painful, but afterwards, I saw his stomach go down some, and the hardness of it had softened. They took out 6 pounds of water and told me that’s all that’s allowed at one time, so as not to shock the system while the water redistributes, which could make his blood pressure fluctuate.

The doctor then explained that the diuretics he was taking had stopped working because the water wasn’t making it over to the kidneys to be excreted; instead the fluid builds in the stomach. He prescribed another pill that is supposed to work synergistically with the diuretic to help move the water to the kidneys. He also added, that more than likely hub would have this procedure again soon for more water removal.

When we got up to leave, hub could button his shirt. The buttons wouldn’t reach when we first got there. He could walk like a normal person, and he was no longer short of breath. Even though we still have to evacuate more fluid, this procedure helped him by alleviating some of the pressure.

We have a few more doctor appointments this week, waiting for more conclusive results, more drainage if these new pills don’t kick in, and next steps with Dr. B next Wednesday, then a cystoscopy next Friday. It’s an ongoing process for prognosis and treatments, but at least we’ve arrived at the cause and are dealing with the symptoms with meds and drainage now. Taking it one day at a time.

April 13th

Bloating is back! Once again I’m tracking down doctors. After less than  24 hours, my husband’s state of feeling better was short-lived. Once again his hopes were deflated. I began the day trying to get through to Dr. B’s office to no avail. I wasn’t prepared to to wait and see just how much more fluid could build until next week’s appointment. I told hub we’re off to barge in without an appointment.

Gratefully I’ve developed a good rapport with his secretary and he saw us. He doubled the dose of the ‘new pill’ and put through a requisition to the hospital to book another drainage procedure ASAP, as he said. I’m wondering how long ‘ASAP’ will take now. More blood work was taken and the lab technician told my husband to take a break from blood tests for a few days as his arms and hands are purple with bruises and it took 2 technicians to get any blood out of him.

I asked Dr. B if the other blood work had come back yet to determine the cause yet of this liver disease, and when he told me it wasn’t back yet, he added that no matter the cause it won’t change the disease, the symptoms, the meds or the fact that it’s not going away. The fluid build-up is reaction to the malfunction of the liver, it is called Ascites, and it’s not an inspirational  symptom.

Tomorrow I’m going to get some well-needed low-down from a visit to my brilliant Naturopath. I’m armed with results from every test for him to go through, as well as doing some of his own testing on hub. If anyone can offer us a dose of compassion and inspiration it’s Dr. Eric. Later, we’ll be back to Dr. M the physician to check pressure and prescribe the new pills. And I think at this point I’m going to request an appointment with a hepatologist.

April 18th

Posted – The Waiting Could Kill You 

Update: April 19th

An interesting story here. I’ll be posting this week. Let’s just say that after a ‘mix up’ my husband is going to hospital tomorrow for a paracentesis (draining) after a very long week.

 

And here is that link https://dgkayewriter.com/healthcare-lost-shuffle/

 

Update:  April 20th

Good things are happening! https://dgkayewriter.com/wishes-prayers-road-victory/ 

 

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