My life after the passing of my wife - 6 years later!!! (2 Viewers)

eoMMan said:

Did she go to Drexel? 

I graduated from there back in day....smart girl.

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cheeseypoof said:

I posted this to my FB account to try and express how I feel.  I'm not eloquent enough to truly express how I feel:














So it's been about 36 hours since my life changed forever. I don't think I have the proper words to express the feelings I have for Courtney Ravenel Sage. It was such an honor to have had a front row seat to the most spectacular display of inner strength anybody could have demonstrated. You have continually demonstrated an amazing amount of courage as you battled various medical conditions over the years, each one more nefarious than the last. Yet through all the struggles, medical tests, doctor visits and hospital stays you never let it get you down. You steadfastly refused to give in to what your body was doing to itself. You maintained an amazingly positive outlook and were determined to beat the disease that was ravaging your body even as you had to adjust to your new reality. While you ultimately lost that battle, the dignity and grace you showed should be an example for everybody. I am humbled to be able to have had you in my life for 27 years (2 as friends/coworkers, 1 as girl friend, 2 as fiancé and 22 as wife). You should be held up as an example as what a true hero looks like. Your pain and suffering has finally ended. Hopefully I am able to show as much strength, dignity and courage as you did during times of adversity. I will love you always and forever and your presence will be eternally etched in my heart and soul. Please continue to look over Ryan and I and guide us through the next portion of our lives. Forever yours. I love you.

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cheeseypoof said:

I posted this to my FB account to try and express how I feel.  I'm not eloquent enough to truly express how I feel:














So it's been about 36 hours since my life changed forever. I don't think I have the proper words to express the feelings I have for Courtney Ravenel Sage. It was such an honor to have had a front row seat to the most spectacular display of inner strength anybody could have demonstrated. You have continually demonstrated an amazing amount of courage as you battled various medical conditions over the years, each one more nefarious than the last. Yet through all the struggles, medical tests, doctor visits and hospital stays you never let it get you down. You steadfastly refused to give in to what your body was doing to itself. You maintained an amazingly positive outlook and were determined to beat the disease that was ravaging your body even as you had to adjust to your new reality. While you ultimately lost that battle, the dignity and grace you showed should be an example for everybody. I am humbled to be able to have had you in my life for 27 years (2 as friends/coworkers, 1 as girl friend, 2 as fiancé and 22 as wife). You should be held up as an example as what a true hero looks like. Your pain and suffering has finally ended. Hopefully I am able to show as much strength, dignity and courage as you did during times of adversity. I will love you always and forever and your presence will be eternally etched in my heart and soul. Please continue to look over Ryan and I and guide us through the next portion of our lives. Forever yours. I love you.

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cheeseypoof said:

I posted this to my FB account to try and express how I feel.  I'm not eloquent enough to truly express how I feel:














So it's been about 36 hours since my life changed forever. I don't think I have the proper words to express the feelings I have for Courtney Ravenel Sage. It was such an honor to have had a front row seat to the most spectacular display of inner strength anybody could have demonstrated. You have continually demonstrated an amazing amount of courage as you battled various medical conditions over the years, each one more nefarious than the last. Yet through all the struggles, medical tests, doctor visits and hospital stays you never let it get you down. You steadfastly refused to give in to what your body was doing to itself. You maintained an amazingly positive outlook and were determined to beat the disease that was ravaging your body even as you had to adjust to your new reality. While you ultimately lost that battle, the dignity and grace you showed should be an example for everybody. I am humbled to be able to have had you in my life for 27 years (2 as friends/coworkers, 1 as girl friend, 2 as fiancé and 22 as wife). You should be held up as an example as what a true hero looks like. Your pain and suffering has finally ended. Hopefully I am able to show as much strength, dignity and courage as you did during times of adversity. I will love you always and forever and your presence will be eternally etched in my heart and soul. Please continue to look over Ryan and I and guide us through the next portion of our lives. Forever yours. I love you.

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cheeseypoof said:

I posted this to my FB account to try and express how I feel.  I'm not eloquent enough to truly express how I feel:














So it's been about 36 hours since my life changed forever. I don't think I have the proper words to express the feelings I have for Courtney Ravenel Sage. It was such an honor to have had a front row seat to the most spectacular display of inner strength anybody could have demonstrated. You have continually demonstrated an amazing amount of courage as you battled various medical conditions over the years, each one more nefarious than the last. Yet through all the struggles, medical tests, doctor visits and hospital stays you never let it get you down. You steadfastly refused to give in to what your body was doing to itself. You maintained an amazingly positive outlook and were determined to beat the disease that was ravaging your body even as you had to adjust to your new reality. While you ultimately lost that battle, the dignity and grace you showed should be an example for everybody. I am humbled to be able to have had you in my life for 27 years (2 as friends/coworkers, 1 as girl friend, 2 as fiancé and 22 as wife). You should be held up as an example as what a true hero looks like. Your pain and suffering has finally ended. Hopefully I am able to show as much strength, dignity and courage as you did during times of adversity. I will love you always and forever and your presence will be eternally etched in my heart and soul. Please continue to look over Ryan and I and guide us through the next portion of our lives. Forever yours. I love you.

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cheeseypoof said:

Going through pictures to put something together for the viewing.  It's actually very cathartic.

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cheeseypoof said:

Thank you for all the well wishes.  Somebody asked for family photos from happier times.  Here are a few:

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doowain said:

Sorry to hear this cheesey.  I can't imagine what you are going through.  T&P your way for you and your family.

I do have some questions if you don't mind answering them as your wife's health issues mirror things that my mother has gone/is currently going through.

Over the last 12-18 months she has had deteriorating health.  She is 54.  Also of note is that my dad left her in October of 2014 (they have since divorced -- married 35 years).  There were two initial symptoms.  The first being memory issues.  It started off small.  For example, she would repeat herself during phone calls.  The second was swelling in her legs below the knee.  She has neuropathy in both feet, so she already had balance issues.  These issues have progressed over the past year.  The memory issues got worse.  The swelling got worse to where she couldn't even lift her leg to get into the car and she was falling quite a bit from the lack of balance.

Fast forward to 3 months ago.  Every time I talked to her it was as if she was living in a fog.  It's the same feeling you get when you are talking to someone that is drunk. She's also, in the last year, lost between 80-100 pounds.  FWIW, she was severely overweight to begin with. 

She had a vein surgery in one of her legs where they had discovered a clot.  That didn't make the swelling any better.  I'd finally had enough of the doctors seemingly giving her the run around, so my sister and I took her to the local hospital.  They identified her potassium was low and white blood cell count was abnormal.  The white blood cell count wasn't news to us as her primary doctor had considered she had hepatitis (alarm bell #1).  With the divorce she hadn't been eating/sleeping right for quite some time.  They kept her three days (ran an obscene amount of tests -- blood work, MRIs, CTs, etc) and came up with more questions than answers (alarm bell #2).  They believed she was just malnourished and suggested she go to a rehab facility to get better as she had severe deterioration in muscle mass, mainly in her legs.  She chose in-home car and a nurse/PT were to come to her house 3 days a week for the foreseeable future.  A week later she went back for another 3 day stint as she wasn't feeling any better.  They did the same routine as before and sent her home.

A few days later, I took her to her GI doctor, with whom she'd had a colonoscopy done 4 months prior, and he was very concerned over her liver.  Her skin and eyes were yellowish and the results from the hospital made him request a liver biopsy.  That was scheduled for the following Wednesday.

Two days before the biopsy she called me at work to let me know she had fallen again and hit her head and there was blood.  Against her wishes, I left work and took her to the hospital.  This time to one I'm comfortable with (son was born there, my wife and I both had surgeries there).  They admitted her that day.  Tuesday was spent performing a battery of tests.  I get a call Wednesday morning while at work that numbed me from head to toe.  The nurses were getting my mom out of bed to take her to the bathroom and she collapsed.  She coded right there.  I raced to the hospital with the nurse on the line.  They were able to revive my mom and she was in ICU.

She spent the next 5 days in ICU with a breathing tube as she wasn't breathing enough on her own.  It was the scariest experience of my life.  She was down without full oxygen for 15 minutes so there was no way to know if there would be any deficiencies, even if she recovered.

So, we had questions.  Lots of them and now we were hoping they'd be able to give us answers.  We were told that her albumin levels were dangerously low.  That could explain the severe swelling in her legs.  She had a blood clot in her lung.  That could explain her cardiac arrest.  All the doctors, however, pointed to her nutrition as being a major culprit.  And they all circled back to her liver.  They performed what tests they could on her liver and found that there were fatty spots on it.

She slowly got better and was moved to the general floor.  Every day in there she got better and more and more the fog lifted.  A week later she was transferred to a rehab facility where she continued to get better.  She spent two weeks there and was able to go home.  She still has a nurse and a physical therapist three days a week until she is fully recovered.  She no longer needs a walker to get around her house.  She can now drive on her own.  For the first time in a long while I feel like my mom is back.

Now, the not-so-good news.  We still don't know fully what caused all of this.  The obvious is her liver, but we still haven't been able to get a biopsy due to her being on blood thinners for the clots.  All signs pointed to her malfunctioning liver (alarm bell #3) being a HUGE part of this.  She's seen her doctor since she left the rehab facility and got more news that she has an auto immune issue (she couldn't recall exactly what he called it )....ALARM BELL #4.

So, cheesey, does any of this sound familiar?  While she's a million times better now, your story scared me into thinking we aren't out of the woods yet as there were A LOT of similarities.  Did your wife experience anything like this?  Memory issues?  The sense that she was living in a fog (we were told poor liver function can cause memory issues)?  Swelling in her legs (the albumin level being low could've been a result of poor liver function)?

I've been pushing hard for the biopsy.  They told her she'd have to be on blood thinners the rest of her life, but a biopsy could still be done.  She'd just have to be off the blood thinners for a month, do the biopsy and get back on them.  I have to talk to her to doctor to find out how soon this can be done.

I completely understand if you don't feel like talking about it.  Also, feel free to PM me if you'd prefer.  Thanks buddy.

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Just Win Baby said:

I echo everyone else's posts, very sorry for your loss and what you all went through. Praying for you and your son and extended family.

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doowain said:

Sorry to hear this cheesey.  I can't imagine what you are going through.  T&P your way for you and your family.

I do have some questions if you don't mind answering them as your wife's health issues mirror things that my mother has gone/is currently going through.

Over the last 12-18 months she has had deteriorating health.  She is 54.  Also of note is that my dad left her in October of 2014 (they have since divorced -- married 35 years).  There were two initial symptoms.  The first being memory issues.  It started off small.  For example, she would repeat herself during phone calls.  The second was swelling in her legs below the knee.  She has neuropathy in both feet, so she already had balance issues.  These issues have progressed over the past year.  The memory issues got worse.  The swelling got worse to where she couldn't even lift her leg to get into the car and she was falling quite a bit from the lack of balance.

Fast forward to 3 months ago.  Every time I talked to her it was as if she was living in a fog.  It's the same feeling you get when you are talking to someone that is drunk. She's also, in the last year, lost between 80-100 pounds.  FWIW, she was severely overweight to begin with. 

She had a vein surgery in one of her legs where they had discovered a clot.  That didn't make the swelling any better.  I'd finally had enough of the doctors seemingly giving her the run around, so my sister and I took her to the local hospital.  They identified her potassium was low and white blood cell count was abnormal.  The white blood cell count wasn't news to us as her primary doctor had considered she had hepatitis (alarm bell #1).  With the divorce she hadn't been eating/sleeping right for quite some time.  They kept her three days (ran an obscene amount of tests -- blood work, MRIs, CTs, etc) and came up with more questions than answers (alarm bell #2).  They believed she was just malnourished and suggested she go to a rehab facility to get better as she had severe deterioration in muscle mass, mainly in her legs.  She chose in-home car and a nurse/PT were to come to her house 3 days a week for the foreseeable future.  A week later she went back for another 3 day stint as she wasn't feeling any better.  They did the same routine as before and sent her home.

A few days later, I took her to her GI doctor, with whom she'd had a colonoscopy done 4 months prior, and he was very concerned over her liver.  Her skin and eyes were yellowish and the results from the hospital made him request a liver biopsy.  That was scheduled for the following Wednesday.

Two days before the biopsy she called me at work to let me know she had fallen again and hit her head and there was blood.  Against her wishes, I left work and took her to the hospital.  This time to one I'm comfortable with (son was born there, my wife and I both had surgeries there).  They admitted her that day.  Tuesday was spent performing a battery of tests.  I get a call Wednesday morning while at work that numbed me from head to toe.  The nurses were getting my mom out of bed to take her to the bathroom and she collapsed.  She coded right there.  I raced to the hospital with the nurse on the line.  They were able to revive my mom and she was in ICU.

She spent the next 5 days in ICU with a breathing tube as she wasn't breathing enough on her own.  It was the scariest experience of my life.  She was down without full oxygen for 15 minutes so there was no way to know if there would be any deficiencies, even if she recovered.

So, we had questions.  Lots of them and now we were hoping they'd be able to give us answers.  We were told that her albumin levels were dangerously low.  That could explain the severe swelling in her legs.  She had a blood clot in her lung.  That could explain her cardiac arrest.  All the doctors, however, pointed to her nutrition as being a major culprit.  And they all circled back to her liver.  They performed what tests they could on her liver and found that there were fatty spots on it.

She slowly got better and was moved to the general floor.  Every day in there she got better and more and more the fog lifted.  A week later she was transferred to a rehab facility where she continued to get better.  She spent two weeks there and was able to go home.  She still has a nurse and a physical therapist three days a week until she is fully recovered.  She no longer needs a walker to get around her house.  She can now drive on her own.  For the first time in a long while I feel like my mom is back.

Now, the not-so-good news.  We still don't know fully what caused all of this.  The obvious is her liver, but we still haven't been able to get a biopsy due to her being on blood thinners for the clots.  All signs pointed to her malfunctioning liver (alarm bell #3) being a HUGE part of this.  She's seen her doctor since she left the rehab facility and got more news that she has an auto immune issue (she couldn't recall exactly what he called it )....ALARM BELL #4.

So, cheesey, does any of this sound familiar?  While she's a million times better now, your story scared me into thinking we aren't out of the woods yet as there were A LOT of similarities.  Did your wife experience anything like this?  Memory issues?  The sense that she was living in a fog (we were told poor liver function can cause memory issues)?  Swelling in her legs (the albumin level being low could've been a result of poor liver function)?

I've been pushing hard for the biopsy.  They told her she'd have to be on blood thinners the rest of her life, but a biopsy could still be done.  She'd just have to be off the blood thinners for a month, do the biopsy and get back on them.  I have to talk to her to doctor to find out how soon this can be done.

I completely understand if you don't feel like talking about it.  Also, feel free to PM me if you'd prefer.  Thanks buddy.

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cheeseypoof said:

Going through pictures to put something together for the viewing.  It's actually very cathartic.

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cheeseypoof said:

My wife's liver disease was diagnosed about 2 years ago, but the odyssey began way before that.  Back in the middle 2000's she would get multiple severe upper respiratory infections each year, at least one of which would turn into pneumonia.  These bouts of pneumonia started getting more severe each time and eventually she would get hospitalized.  Finally her Pulmonologist (she had Asthma) ordered a bunch of different blood tests.  It was discovered that she had what's called Common Variable Immunodeficiency (CVID).  Essentially her body didn't produce enough antibodies to fight infections that's why a case of bronchitis would turn into pneumonia.  She started being treated for CVID in the fall of 2009.  The CVID treatments involved her getting IVIG infusions about once a month.  The treatments stopped the recurring infections and pneumonia.  As part of the management of the CVID they did occasional blood testing.  These blood tests starting showing abnormal liver enzyme levels.  She was also experiencing an enlarged spleen at the time.  She was referred to a GI doctor.  After some testing by the GI doctor she was referred a hematologist.  After more testing she was given a diagnosis of early onset Myelofibrosis.  Myelofibrosis is a rare bone marrow cancer.  End game treatment was a bone marrow transplant.  She was monitored for this for 3-4 years.  The monitoring consisted of frequent blood testing and bone marrow biopsies about every 6 months.  After about 4 years the Hematologist/Oncologist decided that the Myelofibrosis diagnosis was not correct because the disease had not progressed or manifested itself in that time frame.  So my wife was referred back to the GI docs.  After more blood work and a liver biopsy the local GI guy referred us to the liver specialists at the University of Pennsylvania because he was out of his element and finally admitted he wasn't sure what was going on.

The Liver Specialist at Penn diagnosed her as having Autoimmune Hepatitis (non alcoholic) which was causing cirrhosis of the liver.  The main outward physical symptoms were fatigue/lack of energy and occasional bouts of swelling of the feet/legs.  After about 6 months the liver specialist referred her to the transplant team for evaluation. The transplant team deemed her a good candidate and was placed on the Penn Ready Transplant list.  The Penn Ready transplant program accepts non-pristine organs that would be rejected by the UNOS (United Network for Organ Sharing) system.  Penn has apparently had good results with this program.

Since she was now on the transplant list she was required to have monthly blood tests to be done.  They also had occasional endoscopy's and colonoscopy's done.  During one of the Endoscopy's the discovered she had developed Esophageal varicies (essential vericose veins in the esophagus).  The swelling in the legs and feet continued to get worse so she was put on 2 different water pills to reduce and manage the edema.  She was also starting to demonstrate signs of hepatic encephalopathy (confusion and other neurological issues).  The hepatic encephalopathy is basically caused by the build up of toxins in the body because the liver isn't functioning  well enough to filter all the toxins out of the blood.  Besides the confusion sleep patterns can be disrupted.  My wife had big problems with her sleep cycle.  SHe would have trouble staying awake during the day and would be wide awake from 2-5 in the morning.  This was one of the main symptoms that finally put her out of work.  

In October her blood sodium levels started getting dangerously low.  That started the roller coaster ride of trying to balance the dose of the water pills to eliminate the excess fluid in her feet/legs and restricted fluid intake to keep from flushing sodium out of her system.  At one point she was restricted to 1 liter of fluid a day.  They never really seemed to get that balance correct so it seemed like a roller coaster ride.

So for the past 8-9 months is was trying to manage the different manifestations of the cirrhosis while waiting on a liver.  The edema in the feet/legs never really went away and if she tried to do to much it got worse and took a couple of days to resolve.  The confusion/forgetfulness was slowly getting worse.  Hate saying this but some days it was like living with a toddler/adolescent.  She was supposed to have her cell phone on her at all time because that was the number they were going to call if a liver became available.  She would forget to it with her.  Couldn't remember where she left stuff, etc.  It was just a slow and steady decline in her health over the past 6 months.  It was very had to watch and I'm sure she was frustrated by it all be always, almost always, maintained a positive attitude.

The doctors never seemed concerned with her albumin and bilirubin levels,  For my wife it was mostly sodium.  Occasionally they mentioned potassium and magnesium.  Her hemoglobin was low during one of her hospital stay so the game her a blood transfusion.

Hope the above helps and answers some of your questions.  I also hope it makes sense.  It's late and I'm tired.  Let me know if you have any more questions and I'll see if I can give you more feedback.

Cheeseypoof

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cheeseypoof said:

So here I sit not being able to sleep, again.  Viewing is tonight, funeral mass and cremation tomorrow.  My son and I are doing about as well as can be expected.  Hasn't really hit me yet but I expect something to trigger the emotional meltdown in the next 2 days.  My guess is when they start playing Amazing Grace at church.

Talked to  few people about this and they all said it's normal.  I'm feeling guilty because it seems like a gigantic weight has been lifted off my shoulders.  She was the one going through the difficult stuff.  I was just the support team, but didn't realize how much it was effecting me.  Felt the same thing, to a lesser degree, when she would be in the hospital and she wasn't my immediate responsibility.  

Again thank you all for the continued support.  This place has the capacity for greatness in times of turmoil.

Cheeseypoof




 

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cheeseypoof said:

I'm spent.  A ton of people at the viewing.  Steady line of people for over 2 hours.  Every time I though the line was thinning out it would build right back up.  Very humbling.

Mass tomorrow.  Then I get to start moving forward, slowly, again.

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bigbottom said:

Amazing words. Thank you for sharing and my family will be keeping you in our thoughts and prayers. 

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