The Rest of the End of Story...
A few people have asked the details of Helly’s passing, so I thought I’d explain some of that here. Around the first of the year Helly started complaining of being really tired all the time, which she attributed to being stressed at work. I asked her to go to the doctor, but she said she was too busy and would make the appointment around the time of her yearly OBGYN checkup, which would be in April. I wasn’t happy about this, but Helly could be stubborn.
During her OBGYN checkup, the doctor didn’t like what she felt during the pelvic exam, and also noted that Helly was starting to look like she had jaundice. She told Helly that she needed to go to her GP and get checked out, which Helly finally did. The GP immediately ordered a CT scan and a lot of blood work. The blood work showed that she was anemic, and that her thyroid had quit working, but the CT scan showed a lot of ascites (fluid in the abdomen) and a fatty liver and spleen. She was prescribed medicine for her thyroid, iron for the anemia, and an appointment with a gastroenterologist about the liver. It was at this point that she was also told that her liver issues could be the result of excessive drinking, so she quit drinking completely. She was also told that she shouldn’t be driving due to the anemia, so she started working from home as much as she could.
The gastroenterologist also took a lot of blood and ordered an endoscopy, because at this point she had started to lose a lot of weight, which Helly attributed to stress and not having any appetite. He also diagnosed a fatty liver and spleen, and told her that not drinking was the best thing she could be doing. Nothing turned up on the endoscopy, so he prescribed some kind of acid reflux medicine in an attempt to help her appetite.
At this point, for reasons I’m not going to comment on, and if you know this part of the story do not comment on them either because of things that may happen at a future time, Helly decided that she wanted to change doctors because she was not satisfied with her care. She started seeing a doctor associated with her allergist, who took one look at her blood work (her hemoglobin counts were in the 7s, and for women they are generally in the 12s) and immediately sent her to a hematologist. The hematologist diagnosed her with what’s called hemolytic anemia, meaning that her body was destroying its red blood cells. The problem was that he couldn’t understand why. She had a transfusion to add some blood which boosted her hemoglobin count a bit (into the 8s), and started her on prednisone. Prednisone is a very nasty drug, and it affected her balance and also kept her up all night. It also didn’t really work, as her hemoglobin counts never got above the high 8s.
The hematologist had said all along that he also suspected an issue with Helly’s liver, so he made her an appointment with a gastroenterologist that he was confident in. He also wanted to start her on a drug called Rituxan, which would work where prednisone hadn’t.
The new gastroenterologist looked at the previous medical history, and ordered an MRI and additional blood work. This was on Monday, August 8th. She also sent Helly to the hospital for a procedure called paracentesis, where they removed the fluid that had been accumulating in her abdomen. Six liters of fluid were removed. However, that process, and the 14 hour day around it, totally wiped her out. The next two days she spent in bed totally out of it, and after that I basically had to start helping her do, well… most everything.
At the next appointment, on the 22nd of August, the gastroenterologist came back with a diagnosis of cirrhosis of the liver, but with a complicating factor of something called hemochromatosis, which is an unusual genetic disease that causes the liver to “overload iron” into the body and can do damage to the liver and internal organs. The gastroenterologist said that this was unusual enough that she wanted Helly to work directly with a liver specialist at Emory, because the cirrhosis plus the hemochromatosis plus the hemolytic anemia was too complex for her to safely manage.
On Friday the 26th of August, Helly had the first Rituxan treatment. By this point, I was having to lift her into a wheelchair in order to get her to the bathroom, and was having to lift her on and off the toilet and pick her up to put her in or out of the car, because she had become so malnourished and weak that she wasn’t able to stand. It was also at some point in this week that I apparently broke on of her ribs while lifting her up, but she didn’t really say anything about it at the time.
On the morning of Saturday the 27th, she asked me to get her to the ER because the pain in her side from the rib was too great. I called the ambulance, and they took her to Rockdale Medical. She was very dehydrated and in a lot of pain, so they gave her morphine. Looking at her condition, the doctors decided to admit her into the hospital, and we got up to a room around 6pm or so. She ate dinner, the first solid food I’d seen her eat in a while (I had been buying her those high calorie Ensure drinks), and around 10pm I went home. She was up, talking, coherent, and gave me a list of things to bring on Sunday.
At 3:30am Sunday morning the nurse called, telling me she was very agitated and confused, and kept fighting them about keeping her oxygen on. They were also having problems keeping her blood pressure up. I immediately went back to the hospital (I got there around 4am) and stayed with her all day Sunday trying to keep her from taking out her oxygen. Around mid-morning on Sunday I spoke to a gastroenterologist at the hospital, who told me she was in liver failure and that she was suffering from hepatic encephalopathy, which is a type of mental confusion caused by the liver not removing toxins from the blood. He also confirmed the previous diagnosis of “decompensated cirrhosis,” meaning that the liver was no longer able to keep up with filtering toxins from the body, and was very interested in the hemochromatosis. From his description, while her drinking certainly played a factor in her liver issues, the hemochromatosis was the key component. He also said that her only hope would be a liver transplant, but unfortunately she was still months away from even being on a transplant list. He prescribed a treatment with lactulose, which removes the ammonia from the body and would clear up some of her mental confusion. This worked, somewhat, and for a time on Sunday she recognized me and was able to answer yes or no to things. He also ordered another paracentesis, which removed 3 liters of fluid from her abdomen. Then early Monday morning, around 3:30am, the doctors made the call to move her to ICU because they could not keep her blood pressure up or her oxygen levels up.
My mom and brother came up to visit Monday afternoon in ICU, and Helly was coherent enough to recognize them and also interact a bit, but after that the lactulose treatments stopped working. From Monday evening until the end she was mostly incoherent and eventually non-responsive.
Because she was in ICU, I went home Monday night to get some sleep. When I came back on Tuesday morning she had been put on a bi-pap machine to help stabilize her breathing, and was on drugs to boost her blood pressure. It was at this point that I spoke to the doctors who told me that along with everything else, she had a massive infection of e-coli and sepsis, and was on antibiotics. They had a tiny bit of hope, but not much. On Wednesday, I spoke to the doctors again, and at that point I was told that she was not going to survive. I signed the DNR (do not resuscitate) order, meaning that I didn’t want her intubated or CPR performed or any procedures undertaken that would cause her pain or suffering, and that I wanted to her to pass naturally and at peace. I was asked to wait 24 hours just to see if the antibiotics would work, and I guess to also make sure I was still OK with my decision. I spent Wednesday night in the ICU with her, just listening to her breathe and talking to her as I could, and telling her stories about things we had done or things the dogs had done that I knew she always liked hearing about.
On Thursday, September 1st, after consulting with the doctors and nurses in ICU, and being again told that she was non-responsive and would not survive, I made the decision to move her to palliative care and in-hospital hospice, meaning she would stay in the same ICU room but the hospice staff would attend her. I called the family and nearby friends, and once everyone was there the hospice doctor took her off the drugs that were keeping her blood pressure up, removed the antibiotics, and gave her Ativan and morphine to make sure she felt no pain. This started at 1:05pm, and at 2:20pm her heart stopped, and she was gone. She went surrounded by friends and family, with pictures of the dogs taped to the wall nearby and with her wedding rings on her finger. It was as peaceful as something like that could be.
I want to thank all our family and friends who have been there to support both Helly and I throughout this process, and who are standing by me now that she has gone. I will also state that the care Helly received at Rockdale Medical, especially in ICU, was phenomenal. I'm doing the best I can, given the circumstances. The dogs know something is wrong, but of course I can't really tell them in words.
I’m going to end this with some lyrics from Death Cab for Cutie, from their song “What Sarah Said” that has been going through my mind this last week. Emphasis is mine.
During her OBGYN checkup, the doctor didn’t like what she felt during the pelvic exam, and also noted that Helly was starting to look like she had jaundice. She told Helly that she needed to go to her GP and get checked out, which Helly finally did. The GP immediately ordered a CT scan and a lot of blood work. The blood work showed that she was anemic, and that her thyroid had quit working, but the CT scan showed a lot of ascites (fluid in the abdomen) and a fatty liver and spleen. She was prescribed medicine for her thyroid, iron for the anemia, and an appointment with a gastroenterologist about the liver. It was at this point that she was also told that her liver issues could be the result of excessive drinking, so she quit drinking completely. She was also told that she shouldn’t be driving due to the anemia, so she started working from home as much as she could.
The gastroenterologist also took a lot of blood and ordered an endoscopy, because at this point she had started to lose a lot of weight, which Helly attributed to stress and not having any appetite. He also diagnosed a fatty liver and spleen, and told her that not drinking was the best thing she could be doing. Nothing turned up on the endoscopy, so he prescribed some kind of acid reflux medicine in an attempt to help her appetite.
At this point, for reasons I’m not going to comment on, and if you know this part of the story do not comment on them either because of things that may happen at a future time, Helly decided that she wanted to change doctors because she was not satisfied with her care. She started seeing a doctor associated with her allergist, who took one look at her blood work (her hemoglobin counts were in the 7s, and for women they are generally in the 12s) and immediately sent her to a hematologist. The hematologist diagnosed her with what’s called hemolytic anemia, meaning that her body was destroying its red blood cells. The problem was that he couldn’t understand why. She had a transfusion to add some blood which boosted her hemoglobin count a bit (into the 8s), and started her on prednisone. Prednisone is a very nasty drug, and it affected her balance and also kept her up all night. It also didn’t really work, as her hemoglobin counts never got above the high 8s.
The hematologist had said all along that he also suspected an issue with Helly’s liver, so he made her an appointment with a gastroenterologist that he was confident in. He also wanted to start her on a drug called Rituxan, which would work where prednisone hadn’t.
The new gastroenterologist looked at the previous medical history, and ordered an MRI and additional blood work. This was on Monday, August 8th. She also sent Helly to the hospital for a procedure called paracentesis, where they removed the fluid that had been accumulating in her abdomen. Six liters of fluid were removed. However, that process, and the 14 hour day around it, totally wiped her out. The next two days she spent in bed totally out of it, and after that I basically had to start helping her do, well… most everything.
At the next appointment, on the 22nd of August, the gastroenterologist came back with a diagnosis of cirrhosis of the liver, but with a complicating factor of something called hemochromatosis, which is an unusual genetic disease that causes the liver to “overload iron” into the body and can do damage to the liver and internal organs. The gastroenterologist said that this was unusual enough that she wanted Helly to work directly with a liver specialist at Emory, because the cirrhosis plus the hemochromatosis plus the hemolytic anemia was too complex for her to safely manage.
On Friday the 26th of August, Helly had the first Rituxan treatment. By this point, I was having to lift her into a wheelchair in order to get her to the bathroom, and was having to lift her on and off the toilet and pick her up to put her in or out of the car, because she had become so malnourished and weak that she wasn’t able to stand. It was also at some point in this week that I apparently broke on of her ribs while lifting her up, but she didn’t really say anything about it at the time.
On the morning of Saturday the 27th, she asked me to get her to the ER because the pain in her side from the rib was too great. I called the ambulance, and they took her to Rockdale Medical. She was very dehydrated and in a lot of pain, so they gave her morphine. Looking at her condition, the doctors decided to admit her into the hospital, and we got up to a room around 6pm or so. She ate dinner, the first solid food I’d seen her eat in a while (I had been buying her those high calorie Ensure drinks), and around 10pm I went home. She was up, talking, coherent, and gave me a list of things to bring on Sunday.
At 3:30am Sunday morning the nurse called, telling me she was very agitated and confused, and kept fighting them about keeping her oxygen on. They were also having problems keeping her blood pressure up. I immediately went back to the hospital (I got there around 4am) and stayed with her all day Sunday trying to keep her from taking out her oxygen. Around mid-morning on Sunday I spoke to a gastroenterologist at the hospital, who told me she was in liver failure and that she was suffering from hepatic encephalopathy, which is a type of mental confusion caused by the liver not removing toxins from the blood. He also confirmed the previous diagnosis of “decompensated cirrhosis,” meaning that the liver was no longer able to keep up with filtering toxins from the body, and was very interested in the hemochromatosis. From his description, while her drinking certainly played a factor in her liver issues, the hemochromatosis was the key component. He also said that her only hope would be a liver transplant, but unfortunately she was still months away from even being on a transplant list. He prescribed a treatment with lactulose, which removes the ammonia from the body and would clear up some of her mental confusion. This worked, somewhat, and for a time on Sunday she recognized me and was able to answer yes or no to things. He also ordered another paracentesis, which removed 3 liters of fluid from her abdomen. Then early Monday morning, around 3:30am, the doctors made the call to move her to ICU because they could not keep her blood pressure up or her oxygen levels up.
My mom and brother came up to visit Monday afternoon in ICU, and Helly was coherent enough to recognize them and also interact a bit, but after that the lactulose treatments stopped working. From Monday evening until the end she was mostly incoherent and eventually non-responsive.
Because she was in ICU, I went home Monday night to get some sleep. When I came back on Tuesday morning she had been put on a bi-pap machine to help stabilize her breathing, and was on drugs to boost her blood pressure. It was at this point that I spoke to the doctors who told me that along with everything else, she had a massive infection of e-coli and sepsis, and was on antibiotics. They had a tiny bit of hope, but not much. On Wednesday, I spoke to the doctors again, and at that point I was told that she was not going to survive. I signed the DNR (do not resuscitate) order, meaning that I didn’t want her intubated or CPR performed or any procedures undertaken that would cause her pain or suffering, and that I wanted to her to pass naturally and at peace. I was asked to wait 24 hours just to see if the antibiotics would work, and I guess to also make sure I was still OK with my decision. I spent Wednesday night in the ICU with her, just listening to her breathe and talking to her as I could, and telling her stories about things we had done or things the dogs had done that I knew she always liked hearing about.
On Thursday, September 1st, after consulting with the doctors and nurses in ICU, and being again told that she was non-responsive and would not survive, I made the decision to move her to palliative care and in-hospital hospice, meaning she would stay in the same ICU room but the hospice staff would attend her. I called the family and nearby friends, and once everyone was there the hospice doctor took her off the drugs that were keeping her blood pressure up, removed the antibiotics, and gave her Ativan and morphine to make sure she felt no pain. This started at 1:05pm, and at 2:20pm her heart stopped, and she was gone. She went surrounded by friends and family, with pictures of the dogs taped to the wall nearby and with her wedding rings on her finger. It was as peaceful as something like that could be.
I want to thank all our family and friends who have been there to support both Helly and I throughout this process, and who are standing by me now that she has gone. I will also state that the care Helly received at Rockdale Medical, especially in ICU, was phenomenal. I'm doing the best I can, given the circumstances. The dogs know something is wrong, but of course I can't really tell them in words.
I’m going to end this with some lyrics from Death Cab for Cutie, from their song “What Sarah Said” that has been going through my mind this last week. Emphasis is mine.
What Sarah Said
And it came to me then that every plan is a tiny prayer to father time
As I stared at my shoes in the ICU that reeked of piss and 409
And I rationed my breaths as I said to myself that I'd already taken too much today
As each descending peak on the LCD took you a little farther away from me
Away from me
Amongst the vending machines and year-old magazines in a place where we only say goodbye
It stung like a violent wind that our memories depend on a faulty camera in our minds
But I knew that you were a truth I would rather lose than to have never lain beside at all
And I looked around at all the eyes on the ground as the TV entertained itself
'Cause there's no comfort in the waiting room
Just nervous pacers bracing for bad news
And then the nurse comes round and everyone will lift their heads
But I'm thinking of what Sarah said that "Love is watching someone die"
So who's going to watch you die?..
2 Comments:
Oh Alan. Thinking of you and sending you love. xo
By
Julie H, at 11:22 AM
I am so very sorry for your loss. I have been there a couple of times and it is so hard. Prayers to you and your family.
By
Unknown, at 12:20 PM
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