Michelle Platt Pennington Liver Transplant Expense
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Michelle Platt Pennington, one of my best friends from high school, was given only five years left (without a liver transplant) to live in 2002. Being the strong and stubborn woman she is, she persevered until 2013, when she nearly died after lung surgery.
Michelle's story starts in 2002 when, while living in Oregon with her high-school sweetheart and Army husband, Mark Pennington, she was diagnosed with severe Ulcerative Colitis (UC). What she thought was a UC medication side-effect turned out to be the devestating diagnosis of Primary Sclerosing Cholangitis (PSC). She was told that she would need a liver transplant in approximately five years.
Michelle managed to graduate from Pacific University in 2003 with a degree in Integrated Media and Sociology, and she and Mark moved to Pittsburgh to be closer to her family during this difficult time. Her body ceased to function properly, becoming worse with the high-stress job she took, and she was requiring multiple blood transfusions. (She requests that you all consider donating blood and organs to help others like her!)
Michelle barely survived during the next few years, which included an ectopic pregnancy and her THIRD miscarriage, causing a downward spiral of her physical and emotional health. She was informed that she and Mark would never be able to have children.
Her liver started a rapid decline, and she progressed from having Liver Fibrosis to (non-alcoholic) Cirrhosis. During several surgeries and rotating hospital stays, doctors placed stents in Michelle's liver in order to keep her bile ducts open.
She finally stopped working in 2010 and applied for disability, which caused strain on her family's finances with school loans, hospital bills, and medical travel expenses. In 2012, the Army moved Michelle and Mark to the Washington DC metro area.
During 2012, doctors found a mass in Michelle's lung, which, after much testing, grew and multiplied. In order to keep Michelle as a potential candidate for a liver transplant, the lung mass needed removed. It was done, and doctors placed a chest tube (an incredibly painful procedure!!!!!) into her right lung. Michelle lost the ability to swallow and could barely breathe; her lung had deflated due to a massive amount of fluid in her abdomen, internally moving the chest tube to her neck!
Prior to her follow up appointment at Walter Reed, her lung collapsed, requiring emergency surgery, another chest tube, a three-month hospital stay (in the Wounded Warrior ward), and THREE MORE LUNG SURGERIES! The thoracic surgeon explained that the removed lung masses were Castleman's Disease (a rare disorder, somewhat similar to and acting like cancer, with a low survival rate). It was during this time, in 2013, that Michelle nearly died many times. She also regained consciousness during one of her surgeries, when a shunt was being inserted to reroute the portal vein, but she was unable to speak or move to let the doctors know. She now suffers from PTSD as a result of that horrific nightmare.
Michelle's life was a flurry of doctor's appointments, chronic pain, attempts to manage that pain, and even greater attempts to have some semblance of a regular life. If you'd met her during this time, you might never know of her struggles because Michelle hid her pain so well. Along with PTSD, she also struggles with Depression and Anxiety, especially during medical procedures, which occur often in her world.
In 2015, the Army moved Michelle and Mark to North Carolina! In 2016, Michelle developed excruciating back pain, which was dismissed as arthritis. Michelle's acupuncturist ordered X-Rays in 2017, and when her radiologist saw the X-Rays, he ordered her in for two MRIs, then diagnosing her with Osteomyelitis and Discitis. She was immediately admitted into the hospital, where doctors actually disagreed and fought over her treatment.
Interventional Radiologists performed a surprise bone biopsy, where Michelle was not given any anethesia other than Lidocaine. She was thought to have an infection and was administered a PICC line (a permanent and portable IV pump), which she had for 6 weeks, and which continually pumped antibiotics into her. This was in preparation for major back surgery where doctors would install a metal cage, bolts, and a cadaver bone graft, all requiring a minimum of six weeks of recovery before starting PT.
Michelle's major back surgery was scheduled for March 29, 2017, but her doctor cancelled it on March 24 because of her Child-Pugh score (a score that describes the relationship between Cirrhosis and potential mortality). Michelle's surgeon had already arrived from another state, along with multiple other surgeons and physicians, and they collectively decided that without a hepatologist (a liver doctor), they would not attempt to operate on Michelle out of fear of her 30% chance of mortality.
She has now been referred to UNC's Neurosurgery and Transplant/Hepatology Departments for surgery and is awaiting an appointment.
Michelle has always been a strong, kind, giving, and loving person. Due to her cruelly unfair medical issues, she has lost the ability to have children, have a career, and have a pain-free life, also sacrificing almost everything that brought her bliss.
My hope is that we can raise enough money to help pay for Michelle's (and her family's) travel and lodging expenses, daily home help in her recovery, alternative therapies (yoga, massage, swimming, Reiki, essential oils), and even some of Michelle's wishes and dreams. My wish for Michelle is that she be able to complete her bucket list in her remaining time with us, and I'm sure that I am one of many people who loves her that is willing to contribute whatever I can in order for her to be able to do this. I am including her bucket list on here because some of you may be able to help in creative ways that have not crossed my mind! I am also making her share her Amazon Wish List with me (to put on here) in case some of you would like to mail her a surprise to brighten her day!
Thank you for taking the time to read this. Please feel welcome to send along any well-wishes and love. If you need Michelle's address, contact me, and I will happily provide it.
(See Michelle's BUCKET LIST and her WISH LIST below the following definitions.)
DEFINITIONS AND LINKS:
Ulcerative Colitis (UC)
http://www.crohnscolitisfoundation.org
Primary Sclerosing Cholangitis (PSC)-
Please visit: http://pscpartners.org
ectopic pregnancy
http://www.mayoclinic.org/diseases-conditions/ectopic-pregnancy/basics/definition/con-20024262
blood transfusions=A blood transfusion is a safe, common procedure in which blood is given to you through an intravenous (IV) line in one of your blood vessels. Blood transfusions are done to replace blood lost during surgery or due to a serious injury.
http://www.medicinenet.com/blood_transfusion/article.htm
Liver Fibrosis and (non-alcoholic) Cirrhosis=
Michelle has End-Stage (Stage 4) Liver Disease. Hers is caused by her PSC and genetics, not by alcohol or medications.
http://www.sinomedresearch.org/hcv/articles/c7_fibrosis.htm
stents in Michelle's liver= plastic tube that doctors placed in the liver through the throat-stomach- and farther, cutting the Sphincter of Odi (I think), through the bile ducts with a camera, placing stents to open the billiary ducts
mass in Michelle's lung= the finding that led to Michelle's Castleman's diagnosis
chest tube=A chest tube is a hollow, flexible tube placed into the chest. It acts as a drain. Chest tubes drain blood, fluid, or air from around your lungs, heart, or esophagus.
http://www.healthline.com/health/chest-tube-insertion
lung had deflated=
lung collapsed=
THREE MORE LUNG SURGERIES!=
1. Docs removed lymph nodes
2. Video-Assisted Thoracoscopic Surgery (VATS)
3. Video-Assisted Thoracoscopic Surgery (VATS)
4. Talc pleurodesis- Reason for procedure: Pleurodesis is performed in the presence of a pleural effusion. An effusion is a collection of fluid around the lung, in the space between the ribs and the lung.
Castleman's Disease= Castleman disease (CD) is a rare disease of lymph nodes and related tissues. It is also known as Castleman's disease, giant lymph node hyperplasia, and angiofollicular lymph node hyperplasia (AFH). It was first described by Dr. Benjamin Castleman in the 1950s.
https://www.cancer.org/cancer/castleman-disease/about/what-is-castleman-disease.html
reroute the portal vein= Portal vein bypass surgery diverts blood from the portal vein into another vein. It is performed when pressure in the portal vein is so high that it causes internal bleeding from blood vessels in the esophagus.
http://www.surgeryencyclopedia.com/Pa-St/Portal-Vein-Bypass.html
PTSD= Michelle's PTSD was debilitating for three years. She is finally doing a little better managing it and coping. Hers is made worse by anything medical and consists of claustrophobia and panic attacks.
chronic pain= This is in high relation to Chronic Fatigue, especially because nonstop pain causes exhaustion. It's an endless cycle of fighting to have a normal life and do little things that others take for granted. In that respect, little things that others do for Michelle, such as helping around the house or finding ways to make her smile, are helpful in somewhat deterring depression that follows chronic pain and fatigue.
acupuncturist= Michelle is thrilled with the military for "understanding that complementary medicine does exist." It was her acupuncturist who finally ordered her X-Rays after a year of her asking for help for her back from a multitude of other doctors. Her acupuncturist is also an MD.
Acupuncture is a form of alternative medicine in which thin needles are inserted into the body. It is a key component of traditional Chinese medicine (TCM).
Osteomyelitis= infection and inflammation of the bone.[1] It can be usefully subclassified on the basis of the causative organism (pyogenic bacteria or mycobacteria) and the route, duration and anatomic location of the infection. Osteomyelitis usually begins as an acute infection, but it may evolve into a chronic condition.
Discitis= an infection in the intervertebral disc space that affects different age groups. In adults it can lead to severe consequences such as sepsis or epidural abscess but can also spontaneously resolve, especially in children under 8 years of age.
MICHELLE'S BUCKET LIST: (I will add to this as Michelle finds or remembers her other lists!)
Meet Amy Ray or Emily Sailer (from Indigo Girls)
Learn to finger whistle (because she can't whistle)
See Northern Lights
Learn to use chopsticks
Fly in fighter jet
Go to Santorinuo, Greece
See Venice and Rome, Ireland- TRAVEL ANYWHERE!
Go parasailing
Sing karaoke somewhere (not at home)
See the glowing plankton in Naples
Find a sand dollar bed
Go to Universal Studios
Disney World
Go to New Orleans, Louisanna
Have a VW Bug and paint flames on it
Go on a cuise
Louisville quarry swimming and zip lining
NC Waterfalls, camping and trail with Jodie
Visit Savannah, GA
Visit Charleston, SC
Visit Sedona, Arizona
See many musical concerts
Just get into a car and travel and pay for hotel at will
Gatlinburg, Tennessee
Get to know the Platt side of my family better
Fly in a hot air balloon
Go Zorbing (rolling downhill inside an orb made of transparent plastic)
Stay in New York City for a week so because she is fascinated with it for some reason.
See Avenue Q, a broadway show with vulgar puppets
See some plays that are not musicals
MICHELLE'S AMAZON WISH LIST:
https://smile.amazon.com/registry/wishlist/2OX0DZLWX53H2/ref=cm_sw_ic_wl_r/#_swftext_Swf
Michelle's story starts in 2002 when, while living in Oregon with her high-school sweetheart and Army husband, Mark Pennington, she was diagnosed with severe Ulcerative Colitis (UC). What she thought was a UC medication side-effect turned out to be the devestating diagnosis of Primary Sclerosing Cholangitis (PSC). She was told that she would need a liver transplant in approximately five years.
Michelle managed to graduate from Pacific University in 2003 with a degree in Integrated Media and Sociology, and she and Mark moved to Pittsburgh to be closer to her family during this difficult time. Her body ceased to function properly, becoming worse with the high-stress job she took, and she was requiring multiple blood transfusions. (She requests that you all consider donating blood and organs to help others like her!)
Michelle barely survived during the next few years, which included an ectopic pregnancy and her THIRD miscarriage, causing a downward spiral of her physical and emotional health. She was informed that she and Mark would never be able to have children.
Her liver started a rapid decline, and she progressed from having Liver Fibrosis to (non-alcoholic) Cirrhosis. During several surgeries and rotating hospital stays, doctors placed stents in Michelle's liver in order to keep her bile ducts open.
She finally stopped working in 2010 and applied for disability, which caused strain on her family's finances with school loans, hospital bills, and medical travel expenses. In 2012, the Army moved Michelle and Mark to the Washington DC metro area.
During 2012, doctors found a mass in Michelle's lung, which, after much testing, grew and multiplied. In order to keep Michelle as a potential candidate for a liver transplant, the lung mass needed removed. It was done, and doctors placed a chest tube (an incredibly painful procedure!!!!!) into her right lung. Michelle lost the ability to swallow and could barely breathe; her lung had deflated due to a massive amount of fluid in her abdomen, internally moving the chest tube to her neck!
Prior to her follow up appointment at Walter Reed, her lung collapsed, requiring emergency surgery, another chest tube, a three-month hospital stay (in the Wounded Warrior ward), and THREE MORE LUNG SURGERIES! The thoracic surgeon explained that the removed lung masses were Castleman's Disease (a rare disorder, somewhat similar to and acting like cancer, with a low survival rate). It was during this time, in 2013, that Michelle nearly died many times. She also regained consciousness during one of her surgeries, when a shunt was being inserted to reroute the portal vein, but she was unable to speak or move to let the doctors know. She now suffers from PTSD as a result of that horrific nightmare.
Michelle's life was a flurry of doctor's appointments, chronic pain, attempts to manage that pain, and even greater attempts to have some semblance of a regular life. If you'd met her during this time, you might never know of her struggles because Michelle hid her pain so well. Along with PTSD, she also struggles with Depression and Anxiety, especially during medical procedures, which occur often in her world.
In 2015, the Army moved Michelle and Mark to North Carolina! In 2016, Michelle developed excruciating back pain, which was dismissed as arthritis. Michelle's acupuncturist ordered X-Rays in 2017, and when her radiologist saw the X-Rays, he ordered her in for two MRIs, then diagnosing her with Osteomyelitis and Discitis. She was immediately admitted into the hospital, where doctors actually disagreed and fought over her treatment.
Interventional Radiologists performed a surprise bone biopsy, where Michelle was not given any anethesia other than Lidocaine. She was thought to have an infection and was administered a PICC line (a permanent and portable IV pump), which she had for 6 weeks, and which continually pumped antibiotics into her. This was in preparation for major back surgery where doctors would install a metal cage, bolts, and a cadaver bone graft, all requiring a minimum of six weeks of recovery before starting PT.
Michelle's major back surgery was scheduled for March 29, 2017, but her doctor cancelled it on March 24 because of her Child-Pugh score (a score that describes the relationship between Cirrhosis and potential mortality). Michelle's surgeon had already arrived from another state, along with multiple other surgeons and physicians, and they collectively decided that without a hepatologist (a liver doctor), they would not attempt to operate on Michelle out of fear of her 30% chance of mortality.
She has now been referred to UNC's Neurosurgery and Transplant/Hepatology Departments for surgery and is awaiting an appointment.
Michelle has always been a strong, kind, giving, and loving person. Due to her cruelly unfair medical issues, she has lost the ability to have children, have a career, and have a pain-free life, also sacrificing almost everything that brought her bliss.
My hope is that we can raise enough money to help pay for Michelle's (and her family's) travel and lodging expenses, daily home help in her recovery, alternative therapies (yoga, massage, swimming, Reiki, essential oils), and even some of Michelle's wishes and dreams. My wish for Michelle is that she be able to complete her bucket list in her remaining time with us, and I'm sure that I am one of many people who loves her that is willing to contribute whatever I can in order for her to be able to do this. I am including her bucket list on here because some of you may be able to help in creative ways that have not crossed my mind! I am also making her share her Amazon Wish List with me (to put on here) in case some of you would like to mail her a surprise to brighten her day!
Thank you for taking the time to read this. Please feel welcome to send along any well-wishes and love. If you need Michelle's address, contact me, and I will happily provide it.
(See Michelle's BUCKET LIST and her WISH LIST below the following definitions.)
DEFINITIONS AND LINKS:
Ulcerative Colitis (UC)
http://www.crohnscolitisfoundation.org
Primary Sclerosing Cholangitis (PSC)-
Please visit: http://pscpartners.org
ectopic pregnancy
http://www.mayoclinic.org/diseases-conditions/ectopic-pregnancy/basics/definition/con-20024262
blood transfusions=A blood transfusion is a safe, common procedure in which blood is given to you through an intravenous (IV) line in one of your blood vessels. Blood transfusions are done to replace blood lost during surgery or due to a serious injury.
http://www.medicinenet.com/blood_transfusion/article.htm
Liver Fibrosis and (non-alcoholic) Cirrhosis=
Michelle has End-Stage (Stage 4) Liver Disease. Hers is caused by her PSC and genetics, not by alcohol or medications.
http://www.sinomedresearch.org/hcv/articles/c7_fibrosis.htm
stents in Michelle's liver= plastic tube that doctors placed in the liver through the throat-stomach- and farther, cutting the Sphincter of Odi (I think), through the bile ducts with a camera, placing stents to open the billiary ducts
mass in Michelle's lung= the finding that led to Michelle's Castleman's diagnosis
chest tube=A chest tube is a hollow, flexible tube placed into the chest. It acts as a drain. Chest tubes drain blood, fluid, or air from around your lungs, heart, or esophagus.
http://www.healthline.com/health/chest-tube-insertion
lung had deflated=
lung collapsed=
THREE MORE LUNG SURGERIES!=
1. Docs removed lymph nodes
2. Video-Assisted Thoracoscopic Surgery (VATS)
3. Video-Assisted Thoracoscopic Surgery (VATS)
4. Talc pleurodesis- Reason for procedure: Pleurodesis is performed in the presence of a pleural effusion. An effusion is a collection of fluid around the lung, in the space between the ribs and the lung.
Castleman's Disease= Castleman disease (CD) is a rare disease of lymph nodes and related tissues. It is also known as Castleman's disease, giant lymph node hyperplasia, and angiofollicular lymph node hyperplasia (AFH). It was first described by Dr. Benjamin Castleman in the 1950s.
https://www.cancer.org/cancer/castleman-disease/about/what-is-castleman-disease.html
reroute the portal vein= Portal vein bypass surgery diverts blood from the portal vein into another vein. It is performed when pressure in the portal vein is so high that it causes internal bleeding from blood vessels in the esophagus.
http://www.surgeryencyclopedia.com/Pa-St/Portal-Vein-Bypass.html
PTSD= Michelle's PTSD was debilitating for three years. She is finally doing a little better managing it and coping. Hers is made worse by anything medical and consists of claustrophobia and panic attacks.
chronic pain= This is in high relation to Chronic Fatigue, especially because nonstop pain causes exhaustion. It's an endless cycle of fighting to have a normal life and do little things that others take for granted. In that respect, little things that others do for Michelle, such as helping around the house or finding ways to make her smile, are helpful in somewhat deterring depression that follows chronic pain and fatigue.
acupuncturist= Michelle is thrilled with the military for "understanding that complementary medicine does exist." It was her acupuncturist who finally ordered her X-Rays after a year of her asking for help for her back from a multitude of other doctors. Her acupuncturist is also an MD.
Acupuncture is a form of alternative medicine in which thin needles are inserted into the body. It is a key component of traditional Chinese medicine (TCM).
Osteomyelitis= infection and inflammation of the bone.[1] It can be usefully subclassified on the basis of the causative organism (pyogenic bacteria or mycobacteria) and the route, duration and anatomic location of the infection. Osteomyelitis usually begins as an acute infection, but it may evolve into a chronic condition.
Discitis= an infection in the intervertebral disc space that affects different age groups. In adults it can lead to severe consequences such as sepsis or epidural abscess but can also spontaneously resolve, especially in children under 8 years of age.
MICHELLE'S BUCKET LIST: (I will add to this as Michelle finds or remembers her other lists!)
Meet Amy Ray or Emily Sailer (from Indigo Girls)
Learn to finger whistle (because she can't whistle)
See Northern Lights
Learn to use chopsticks
Fly in fighter jet
Go to Santorinuo, Greece
See Venice and Rome, Ireland- TRAVEL ANYWHERE!
Go parasailing
Sing karaoke somewhere (not at home)
See the glowing plankton in Naples
Find a sand dollar bed
Go to Universal Studios
Disney World
Go to New Orleans, Louisanna
Have a VW Bug and paint flames on it
Go on a cuise
Louisville quarry swimming and zip lining
NC Waterfalls, camping and trail with Jodie
Visit Savannah, GA
Visit Charleston, SC
Visit Sedona, Arizona
See many musical concerts
Just get into a car and travel and pay for hotel at will
Gatlinburg, Tennessee
Get to know the Platt side of my family better
Fly in a hot air balloon
Go Zorbing (rolling downhill inside an orb made of transparent plastic)
Stay in New York City for a week so because she is fascinated with it for some reason.
See Avenue Q, a broadway show with vulgar puppets
See some plays that are not musicals
MICHELLE'S AMAZON WISH LIST:
https://smile.amazon.com/registry/wishlist/2OX0DZLWX53H2/ref=cm_sw_ic_wl_r/#_swftext_Swf
Organizer
Jodie Jordan
Organizer
Fayetteville, NC