Hi! My name is Jenifer, and I have Cushing's Disease.
Until about two years ago, Cushing's Disease was not a part of my vocabulary. Neither was cortisol, nor ACTH. Little did I know, these terms were components in the life I had probably lived for decades. Growing up, I'd always been a little bigger than the rest of the girls in my class. Yes, I'd tend to be on the chubby side from time to time, but I was not obese. I was also tall for my age. Looking back on my childhood health records, there were many years where my height and weight were proportionate. However, I always felt big and out of place. The kids at school picked on me relentlessly, making a spectacle of me and my "weight problem." I'm surprised I didn't suffer from depression at an earlier age.
Once I hit puberty at the age of ten, things seemed to happen overnight. All of a sudden, I had breasts and a mass of underarm hair. A year later, on Thanksgiving, I had my first period. Within a few years, I began going through cycles of unintentional weight gain. I can remember feeling as though I was blowing up like a balloon, and no diet or exercise program could reverse it.
In my late teens, I remember noticing the "buffalo hump" below my neck, and thinking to myself, "I really have to work on my posture. I can’t believe I’ve got a hunched back at age 17!" By graduation, I stood 5'5" and weighed about 215 pounds; I'd all but given up hope of weight loss. I succumbed to the fact that I was just fat and that was the way I'd always be. As long as my heart was in good condition and I didn't develop diabetes, I'd learn to live with it.
By 2003, I'd met and married my wonderful husband. Two years later, the health issues started to rear their ugly heads. First came the hypothyroidism and hypertension. In 2010 (after having my two beautiful, healthy children), I was diagnosed with high cholesterol and insulin resistance. Then there was the hiatal hernia above my stomach. Acid reflux. Polycystic ovarian syndrome (PCOS). And finally, a mild case of non-alcoholic fatty liver disease.
For the past four years I’ve known something wasn’t quite right and have been looking for an answer. The past two years have gotten progressively worse for me, as I began experiencing severe fatigue, muscle weakness, depression, easy bruising & bleeding, a "moon face," severe water retention (legs & stomach), acne, unwanted hair growth, acanthosis nigricans (dark patch on the back of my neck that stretched from ear lobe to ear lobe), straw-like hair, cognitive impairment, and mood swings. I also felt like there was "something" behind my right eye - it wasn't a pain, but more like a pressure. All these changes made it feel like there was a monster living inside me.
It was in May of 2012, after doing my own research, that I came up with a possible link to Cushing’s Syndrome or Cushing's Disease. When I suggested it to my primary care doctor, I was brushed off and referred to a local endocrinologist in Erie. I met with the endo-certified registered nurse practioner (CRNP), explained my symptoms, and asked if I could possibly have Cushing's. She told me that Cushing's is a rare disease and there was no way I could possibly have that. In fact, all my problems were a result of me not taking care of myself and from polycystic ovarian syndrome (PCOS). When I questioned her diagnosis and pointed out the buffalo hump on my back (a characteristic of Cushing's), the CRNP told me that PCOS can mask itself as Cushing's. Patients with Cushing's have central obesity and thin arms and legs. She then told me that I'm "fat all over" and that I do not have a buffalo hump; rather, I have poor posture. After a year of seeing the CRNP and never seeing the actual endocrinologist, I decided to get a second opinion in February 2014. I was appalled and scared for my life after that endocrinologist laughed at me for asking about Cushing's and then arrogantly told me, "I don't know what to do for you."
Finally, on March 31, 2014, I went to Cleveland Clinic. I was sick and tired of the doctors in my area not producing answers for me. I was up in arms and wondering how I could possibly have so many things wrong with me at such a young age. A couple weeks prior to my Cleveland visit, I had tripped going up the steps in the garage and landed on my right shin. I immediately started to bruise, and within less than 24 hours, my leg, ankle, and foot were all the colors of the rainbow! At the local emergency room, ultrasounds and clotting panels came back normal, and x-rays of my leg did not detect a fracture or break.
My leg certainly sent up warning signals with my Cleveland endocrinologist, Dr. Leila Khan. Then she looked at my previous lab work and was almost shocked to see that my DHEA-s and testosterone levels were so high. She was also adamant that we begin testing for Cushing's after seeing that my ACTH and a.m. cortisol levels in the past were elevated. After the results from the extensive blood, salivary, urine, and supression tests used to diagnose Cushing's came back abnormal, Dr. Khan was confident that my pituitary gland that was the culprit.
On Friday, May 23, 2014 I was back in Cleveland for another test. I also met with an endocrine-fellow, Dr. Johnston, who asked me to participate in a study of cyclic Cushing's. In this study, I was required to submit saliva samples over a period of six weeks. Of course I was happy and honored to do so - anything to help doctors uncover the mysteries of this debilitating disease! After meeting with Dr. Johnston, I underwent the DEX-CRH test. My results from the DEX-CRH test proved, once and for all, that there was a possible growth on my pituitary gland. The true nature of the beast, Cushing’s Disease, was finally established.
On May 30, 2014 I had my brain MRI. On June 2nd, Dr. Khan called to give me the "best" news I've had in years - there was a 5x4x3mm adenoma on my pituitary gland! The tumor was active (meaning it was overproducing ACTH), growing in a downward position, and was touching my right optic nerve, but not compressing it. Then she told me that I was right about suspecting this disease two years ago. What a nice thing to hear instead of, "You’re crazy! You don't know what you're talking about! Eat less and exercise more!" I can remember calling my husband to tell him the news and saying, "See?? I told you it was all in my head!!" It was overwhelming to know that I wasn't crazy and really was sick; not just fabricating things in my mind.
Within a week, I met my neurosurgeon (Dr. Pablo Recinos) and my ENT doctor (Dr. Troy Woodard), as well as their nurses and fellows who would be assisting them during my operation. My transsphenoidal surgery was scheduled for Monday, August 18, 2014. It seemed so far away, and I had to occupy my thoughts with happy things like listening to my beautiful kids laughing and playing in the summer sun. I’ve never seen anybody catch frogs, toads, and salamanders like my kids! These creatures were fortunate enough to spend the better part of their day floating in the kiddie pool, playing house inside a custom-built wooden block home, or going for a spin around the yard in the Radio Flyer. I really enjoyed spending the weekends fishing with my husband, who has been so supportive and patient with me. He takes care of so much for me and distracted my mind as best as he could that summer. I really don’t know that I would have made it without him. Work was another thing that kept my mind busy, but the last few weeks were rough. I did a lot of struggling to look for words during lecture (at the time, I was a dental assistant instructor), and my eyes weren’t focusing right. They felt like they were bouncing.
The overall sense of not feeling good had taken its toll. I would get so tired out. I'm not sure how I carried myself around most days. This is a tough thing to admit…..but it’s part of the disease & maybe others who have Cushing’s can relate…..but I had gained so much weight, it was difficult to bathe and dress. I would get winded from doing these simple daily care routines, and have to sit down and rest.
Finally my big day arrived. I'll never forget the trip from the prep-room to the operating room. A nurse - a tall, thin, vibrant young man - grabbed hold of my gurney and literally ran me to my destination! It was so much fun! I smiled the whole way to the operating room and can remember thinking what an incredible journey I'd been on; with periods of wonder, worry, anger, sadness, fear, and hopelessness. Seeing the operating room - all the equipment, the lights, the instruments, the flat screen TVs with my name and vitals on them - it took my breath away. It was really happening! Then, Dr. Recinos came in with his team and everyone huddled around me. They explained what they'd be doing, how they'd be keeping in contact with my family during the operation, and how my cortisol levels post-op would determine if the surgery was a success. (My husband later told me that, after the operation, Dr. Recinos said that nothing would make him happier than to see my cortisol levels plummet and have me get really sick the next day - the tell-tale sign that the surgery was a success.)
Dr. Recinos got his wish - my cortisol levels dropped to zero and boy was I miserable! I was able to go home by Thursday with my new medicine regimen of hydrocortisone. By the weekend, I was feeling pretty lousy and did a lot of sleeping. When I woke up from a nap that Sunday, I noticed I had double vision. A few days later, I had a post-op appointment to have the surgical packing removed via my nose - definitely an odd sensation! My doctors evaluated me and determined that I had a 6th nerve palsy due to swelling at the surgical site that would clear up with a Prednisone taper.
As I was coming off the Prednisone taper and getting ready to start my hydrocortisone taper, I began to experience joint and muscle pain. I tried going back to work at the end of September, but I only lasted a week. I was very frustrated with my energy level. I felt the need to get up and move, but there were days when I just couldn’t. Some days, the only relief I got was to lie down, as it hurt to sit or stand. I had to tell myself it was ok to take a nap or to go back to bed for another hour after my kids got on the school bus. Pushing myself to do more than I was physically capable of wouldn't speed up the healing process.
At first, I didn’t lose much weight – maybe 10 pounds – but I was told weight loss would be easier to achieve once I decreased or came off the steroids. I began to notice a tremendous difference in my appetite – it was pretty much non-existent! Some days I couldn’t stand the thought, sight, or smell of food and had to force myself to eat, or at least supplement with nutritional drinks.
While recovery hasn't been easy, I really cannot complain. There are so many others who have suffered with this disease for so long, that some of theur disfigurements and ailments are permanent. Two weeks after I began the Prednisone taper for my eye, the 6th nerve palsy cleared up. To date: the easy bruising has gone away, the ancanthosis nigricans is gone, and my buffalo hump has gotten significantly smaller. I am no longer on blood pressure or thyroid meds, the acne and hirsutism has subsided remarkably, and my concentration level has improved. Even my hair feels and looks much better. Currently, I am on a very low dose of Cortef (hydrocortisone) in the morning only, and I have lost 53 pounds.
The only major set back I have encountered was having a hysterectomy this July (2015); a month shy of my 1-year post-op anniversary. Two years ago, before I knew that I had Cushing's Disease, I had a D&C and ablation performed by my OBGYN to curtail the menorrhagia that I was going through every month. While the ablation fixed the problem at the time, it wasn't a permanent solution. A few months ago, I started experiencing severe cramps and spotting. An ultrasound revealed a uterine fibroid, several benign cysts in my cervix, and fluid in my right fallopian tube that had caused it to swell to three times its normal size. On July 28, 2015, I had a total hysterectomy with bilateral salpingectomy; this means that everything was removed except the ovaries. My OBGYN who performed the operation told my husband, Charlie, that she was concerned about post-op infection within the tissues surrounding the incision. Because of my two previous C-sections, there was a buildup of scar tissue, and to gain access into my abdomen for the surgery, she had to make quite a large incision (literally hip to hip). We were told to keep an eye out for signs of infection: redness, swelling, and most importantly, a fever. (Sounds like she was more concerned about her unclean protocols, as I have been told that excess scar tissue has NOTHING to do with infections!!!!)
Wouldn't "luck" have it, about 2 weeks post-op I started to feel a bit sluggish. I had a migraine on Tuesday Aug 11, 2015 that resulted in vomiting. On Thursday Aug 13th, I felt like I was carrying a cannonball around in my belly. By Sunday Aug 16th, I had an overall feeling of "blech" and woke up from a nap with chills and a fever. My temp was only 100.5 F - my discharge nurse at the hospital said a fever above 101 F would be cause for concern. I was adamant I didn't need to go to the hospital yet, but Charlie was already making phone calls and getting the kids and me ready to go. I think it finally sunk in that this was nothing to mess around with when he got eye level and said to me, "So do you want to go to the hospital now, or would you rather wait for your fever to go up that last half degree and have things get really bad??" (God, I love that man!!! If there is anyone that can knock sense into me when I'm going through one of my stubborn-fits, it's him!!)
We dropped the kids off at my mother-in-law's house to spend the night. The whole way to UPMC Hamot in Erie, I kept telling Charlie that we should go back; I didn't feel warm anymore and if my fever was gone, the ER nurses would be irritated with me. Charlie just ignored my protesting, never gave in, and kept driving.
Once we arrived at the ER and my vitals were taken, I was surprised that I did still have a fever. My blood pressure was a little high as well. After an examination and some blood work, I was off to radiology for an abdominal CT scan. The results were a bit alarming: a had a 4x14 cm mass of fluid near my incision. It was hard to tell whether it was a hematoma (collection of blood) or a seroma (collection of fluids); either way, it was infected and needed immediate attention.
I was taken to UPMC Women's Hospital (next door), and given IV fluids, antibiotics, and pain medication. By now, it was 4a.m. and Charlie and I were beat. We were warned that I would probably need surgery before noon to remove the infection. Charlie went home to let the dogs out and catch an hour or two of sleep, and I tried to rest.
By 10:45a.m., I was in the OR once again. The surgery last approximately 2 hours. While the OR doctors had to re-open my incision, they did not have to interrogate the abdominal muscles, as with the hysterectomy. The seroma fluid was removed, as well as the surrounding tissues that it had spread to and infected. Instead of stitching me back up, I had a vac wound dressing placed. Now that is an interesting contraption!
There is surgical foam packed within the wound, along with a drain tube.The tube is about a foot long with a connector at the end. This connector joins with another length of tube, and that tube is attached to a little machine. The machine actually vacuums the blood and fluid from my wound into a container on the machine. The container has a gel packet inside which opens and mixes with the fluids, acting as a solidifying agent. I have to discard the container and replace it with a new one periodically.
Once I hit puberty at the age of ten, things seemed to happen overnight. All of a sudden, I had breasts and a mass of underarm hair. A year later, on Thanksgiving, I had my first period. Within a few years, I began going through cycles of unintentional weight gain. I can remember feeling as though I was blowing up like a balloon, and no diet or exercise program could reverse it.
In my late teens, I remember noticing the "buffalo hump" below my neck, and thinking to myself, "I really have to work on my posture. I can’t believe I’ve got a hunched back at age 17!" By graduation, I stood 5'5" and weighed about 215 pounds; I'd all but given up hope of weight loss. I succumbed to the fact that I was just fat and that was the way I'd always be. As long as my heart was in good condition and I didn't develop diabetes, I'd learn to live with it.
By 2003, I'd met and married my wonderful husband. Two years later, the health issues started to rear their ugly heads. First came the hypothyroidism and hypertension. In 2010 (after having my two beautiful, healthy children), I was diagnosed with high cholesterol and insulin resistance. Then there was the hiatal hernia above my stomach. Acid reflux. Polycystic ovarian syndrome (PCOS). And finally, a mild case of non-alcoholic fatty liver disease.
For the past four years I’ve known something wasn’t quite right and have been looking for an answer. The past two years have gotten progressively worse for me, as I began experiencing severe fatigue, muscle weakness, depression, easy bruising & bleeding, a "moon face," severe water retention (legs & stomach), acne, unwanted hair growth, acanthosis nigricans (dark patch on the back of my neck that stretched from ear lobe to ear lobe), straw-like hair, cognitive impairment, and mood swings. I also felt like there was "something" behind my right eye - it wasn't a pain, but more like a pressure. All these changes made it feel like there was a monster living inside me.
It was in May of 2012, after doing my own research, that I came up with a possible link to Cushing’s Syndrome or Cushing's Disease. When I suggested it to my primary care doctor, I was brushed off and referred to a local endocrinologist in Erie. I met with the endo-certified registered nurse practioner (CRNP), explained my symptoms, and asked if I could possibly have Cushing's. She told me that Cushing's is a rare disease and there was no way I could possibly have that. In fact, all my problems were a result of me not taking care of myself and from polycystic ovarian syndrome (PCOS). When I questioned her diagnosis and pointed out the buffalo hump on my back (a characteristic of Cushing's), the CRNP told me that PCOS can mask itself as Cushing's. Patients with Cushing's have central obesity and thin arms and legs. She then told me that I'm "fat all over" and that I do not have a buffalo hump; rather, I have poor posture. After a year of seeing the CRNP and never seeing the actual endocrinologist, I decided to get a second opinion in February 2014. I was appalled and scared for my life after that endocrinologist laughed at me for asking about Cushing's and then arrogantly told me, "I don't know what to do for you."
Finally, on March 31, 2014, I went to Cleveland Clinic. I was sick and tired of the doctors in my area not producing answers for me. I was up in arms and wondering how I could possibly have so many things wrong with me at such a young age. A couple weeks prior to my Cleveland visit, I had tripped going up the steps in the garage and landed on my right shin. I immediately started to bruise, and within less than 24 hours, my leg, ankle, and foot were all the colors of the rainbow! At the local emergency room, ultrasounds and clotting panels came back normal, and x-rays of my leg did not detect a fracture or break.
My leg certainly sent up warning signals with my Cleveland endocrinologist, Dr. Leila Khan. Then she looked at my previous lab work and was almost shocked to see that my DHEA-s and testosterone levels were so high. She was also adamant that we begin testing for Cushing's after seeing that my ACTH and a.m. cortisol levels in the past were elevated. After the results from the extensive blood, salivary, urine, and supression tests used to diagnose Cushing's came back abnormal, Dr. Khan was confident that my pituitary gland that was the culprit.
On Friday, May 23, 2014 I was back in Cleveland for another test. I also met with an endocrine-fellow, Dr. Johnston, who asked me to participate in a study of cyclic Cushing's. In this study, I was required to submit saliva samples over a period of six weeks. Of course I was happy and honored to do so - anything to help doctors uncover the mysteries of this debilitating disease! After meeting with Dr. Johnston, I underwent the DEX-CRH test. My results from the DEX-CRH test proved, once and for all, that there was a possible growth on my pituitary gland. The true nature of the beast, Cushing’s Disease, was finally established.
On May 30, 2014 I had my brain MRI. On June 2nd, Dr. Khan called to give me the "best" news I've had in years - there was a 5x4x3mm adenoma on my pituitary gland! The tumor was active (meaning it was overproducing ACTH), growing in a downward position, and was touching my right optic nerve, but not compressing it. Then she told me that I was right about suspecting this disease two years ago. What a nice thing to hear instead of, "You’re crazy! You don't know what you're talking about! Eat less and exercise more!" I can remember calling my husband to tell him the news and saying, "See?? I told you it was all in my head!!" It was overwhelming to know that I wasn't crazy and really was sick; not just fabricating things in my mind.
Within a week, I met my neurosurgeon (Dr. Pablo Recinos) and my ENT doctor (Dr. Troy Woodard), as well as their nurses and fellows who would be assisting them during my operation. My transsphenoidal surgery was scheduled for Monday, August 18, 2014. It seemed so far away, and I had to occupy my thoughts with happy things like listening to my beautiful kids laughing and playing in the summer sun. I’ve never seen anybody catch frogs, toads, and salamanders like my kids! These creatures were fortunate enough to spend the better part of their day floating in the kiddie pool, playing house inside a custom-built wooden block home, or going for a spin around the yard in the Radio Flyer. I really enjoyed spending the weekends fishing with my husband, who has been so supportive and patient with me. He takes care of so much for me and distracted my mind as best as he could that summer. I really don’t know that I would have made it without him. Work was another thing that kept my mind busy, but the last few weeks were rough. I did a lot of struggling to look for words during lecture (at the time, I was a dental assistant instructor), and my eyes weren’t focusing right. They felt like they were bouncing.
The overall sense of not feeling good had taken its toll. I would get so tired out. I'm not sure how I carried myself around most days. This is a tough thing to admit…..but it’s part of the disease & maybe others who have Cushing’s can relate…..but I had gained so much weight, it was difficult to bathe and dress. I would get winded from doing these simple daily care routines, and have to sit down and rest.
Finally my big day arrived. I'll never forget the trip from the prep-room to the operating room. A nurse - a tall, thin, vibrant young man - grabbed hold of my gurney and literally ran me to my destination! It was so much fun! I smiled the whole way to the operating room and can remember thinking what an incredible journey I'd been on; with periods of wonder, worry, anger, sadness, fear, and hopelessness. Seeing the operating room - all the equipment, the lights, the instruments, the flat screen TVs with my name and vitals on them - it took my breath away. It was really happening! Then, Dr. Recinos came in with his team and everyone huddled around me. They explained what they'd be doing, how they'd be keeping in contact with my family during the operation, and how my cortisol levels post-op would determine if the surgery was a success. (My husband later told me that, after the operation, Dr. Recinos said that nothing would make him happier than to see my cortisol levels plummet and have me get really sick the next day - the tell-tale sign that the surgery was a success.)
Dr. Recinos got his wish - my cortisol levels dropped to zero and boy was I miserable! I was able to go home by Thursday with my new medicine regimen of hydrocortisone. By the weekend, I was feeling pretty lousy and did a lot of sleeping. When I woke up from a nap that Sunday, I noticed I had double vision. A few days later, I had a post-op appointment to have the surgical packing removed via my nose - definitely an odd sensation! My doctors evaluated me and determined that I had a 6th nerve palsy due to swelling at the surgical site that would clear up with a Prednisone taper.
As I was coming off the Prednisone taper and getting ready to start my hydrocortisone taper, I began to experience joint and muscle pain. I tried going back to work at the end of September, but I only lasted a week. I was very frustrated with my energy level. I felt the need to get up and move, but there were days when I just couldn’t. Some days, the only relief I got was to lie down, as it hurt to sit or stand. I had to tell myself it was ok to take a nap or to go back to bed for another hour after my kids got on the school bus. Pushing myself to do more than I was physically capable of wouldn't speed up the healing process.
At first, I didn’t lose much weight – maybe 10 pounds – but I was told weight loss would be easier to achieve once I decreased or came off the steroids. I began to notice a tremendous difference in my appetite – it was pretty much non-existent! Some days I couldn’t stand the thought, sight, or smell of food and had to force myself to eat, or at least supplement with nutritional drinks.
While recovery hasn't been easy, I really cannot complain. There are so many others who have suffered with this disease for so long, that some of theur disfigurements and ailments are permanent. Two weeks after I began the Prednisone taper for my eye, the 6th nerve palsy cleared up. To date: the easy bruising has gone away, the ancanthosis nigricans is gone, and my buffalo hump has gotten significantly smaller. I am no longer on blood pressure or thyroid meds, the acne and hirsutism has subsided remarkably, and my concentration level has improved. Even my hair feels and looks much better. Currently, I am on a very low dose of Cortef (hydrocortisone) in the morning only, and I have lost 53 pounds.
The only major set back I have encountered was having a hysterectomy this July (2015); a month shy of my 1-year post-op anniversary. Two years ago, before I knew that I had Cushing's Disease, I had a D&C and ablation performed by my OBGYN to curtail the menorrhagia that I was going through every month. While the ablation fixed the problem at the time, it wasn't a permanent solution. A few months ago, I started experiencing severe cramps and spotting. An ultrasound revealed a uterine fibroid, several benign cysts in my cervix, and fluid in my right fallopian tube that had caused it to swell to three times its normal size. On July 28, 2015, I had a total hysterectomy with bilateral salpingectomy; this means that everything was removed except the ovaries. My OBGYN who performed the operation told my husband, Charlie, that she was concerned about post-op infection within the tissues surrounding the incision. Because of my two previous C-sections, there was a buildup of scar tissue, and to gain access into my abdomen for the surgery, she had to make quite a large incision (literally hip to hip). We were told to keep an eye out for signs of infection: redness, swelling, and most importantly, a fever. (Sounds like she was more concerned about her unclean protocols, as I have been told that excess scar tissue has NOTHING to do with infections!!!!)
Wouldn't "luck" have it, about 2 weeks post-op I started to feel a bit sluggish. I had a migraine on Tuesday Aug 11, 2015 that resulted in vomiting. On Thursday Aug 13th, I felt like I was carrying a cannonball around in my belly. By Sunday Aug 16th, I had an overall feeling of "blech" and woke up from a nap with chills and a fever. My temp was only 100.5 F - my discharge nurse at the hospital said a fever above 101 F would be cause for concern. I was adamant I didn't need to go to the hospital yet, but Charlie was already making phone calls and getting the kids and me ready to go. I think it finally sunk in that this was nothing to mess around with when he got eye level and said to me, "So do you want to go to the hospital now, or would you rather wait for your fever to go up that last half degree and have things get really bad??" (God, I love that man!!! If there is anyone that can knock sense into me when I'm going through one of my stubborn-fits, it's him!!)
We dropped the kids off at my mother-in-law's house to spend the night. The whole way to UPMC Hamot in Erie, I kept telling Charlie that we should go back; I didn't feel warm anymore and if my fever was gone, the ER nurses would be irritated with me. Charlie just ignored my protesting, never gave in, and kept driving.
Once we arrived at the ER and my vitals were taken, I was surprised that I did still have a fever. My blood pressure was a little high as well. After an examination and some blood work, I was off to radiology for an abdominal CT scan. The results were a bit alarming: a had a 4x14 cm mass of fluid near my incision. It was hard to tell whether it was a hematoma (collection of blood) or a seroma (collection of fluids); either way, it was infected and needed immediate attention.
I was taken to UPMC Women's Hospital (next door), and given IV fluids, antibiotics, and pain medication. By now, it was 4a.m. and Charlie and I were beat. We were warned that I would probably need surgery before noon to remove the infection. Charlie went home to let the dogs out and catch an hour or two of sleep, and I tried to rest.
By 10:45a.m., I was in the OR once again. The surgery last approximately 2 hours. While the OR doctors had to re-open my incision, they did not have to interrogate the abdominal muscles, as with the hysterectomy. The seroma fluid was removed, as well as the surrounding tissues that it had spread to and infected. Instead of stitching me back up, I had a vac wound dressing placed. Now that is an interesting contraption!
There is surgical foam packed within the wound, along with a drain tube.The tube is about a foot long with a connector at the end. This connector joins with another length of tube, and that tube is attached to a little machine. The machine actually vacuums the blood and fluid from my wound into a container on the machine. The container has a gel packet inside which opens and mixes with the fluids, acting as a solidifying agent. I have to discard the container and replace it with a new one periodically.
The foam (dressing) has to be changed three times a week until the wound completely healed. The foam is cut to the length and width of the wound, packed inside the area, covered with "drape" (which is essentially medical tape), and vacuum-sealed. With each dressing change, less foam is needed, provided the wound is healing properly.
My first dressing change was on the day I went home from the hospital - it is most unpleasant. While not excruciating, I can't lie and say it isn't painful. It feels like having hair ripped from the roots and someone scorching your skin with a lighter at the same time. Packing the foam is also uncomfortable, but mostly just a very odd sensation. (Thankfully, my entire lower abdomen was still numb from the hysterectomy surgery!)
This system allows patients to heal from the inside out. The only downfalls (for me) were that I had to walk around attached to a machine (albeit lightweight and carried in a nice little "purse"), and I could only shower on the days I had my dressing changed so that the surgical tape covering the foam didn't peel off. Returning to work & driving were not recommended until the wound healed. Additionally, there was some concern with how fast I would heal due to my steroid meds for Cushing's. However, on September 14, 2015, the wound-vac was removed and I completely healed as of October 15, 2015.
Cushing's Disease is rare (only 10 to 15 people per million are diagnosed every year), but obviously it isn’t rare enough that people are never diagnosed with it. I would never wish this disease on anybody, but sometimes I wish I could just touch people and let them feel for one minute what I've gone through. I've often compared Cushing's Disease to the aftermath of a tornado. You see images of all that chaos and destruction; you feel the hopelessness and helplessness that the victims must be feeling; and you think, "Oh my gosh, how in the world are they ever going to pick up and get back to living a normal life after all that destruction?" That’s what living with Cushing's Disease is like. People that don't know how it feels think perhaps that us "Cushies" are making things up or blowing things out of proportion. No - we're not. Cushing's Disease is a very real thing.
My thoughts and prayers are with all of those who are suffering from, recovering from, and still fighting with this wretched disease. While I wish I had more knowledge of this disease decades ago for my benefit alone, I am grateful to have gone through this journey. I truly believe that God brought me to this disease in order to reach out to others and help them with their trials and tribulations related to Cushing's.
My first dressing change was on the day I went home from the hospital - it is most unpleasant. While not excruciating, I can't lie and say it isn't painful. It feels like having hair ripped from the roots and someone scorching your skin with a lighter at the same time. Packing the foam is also uncomfortable, but mostly just a very odd sensation. (Thankfully, my entire lower abdomen was still numb from the hysterectomy surgery!)
This system allows patients to heal from the inside out. The only downfalls (for me) were that I had to walk around attached to a machine (albeit lightweight and carried in a nice little "purse"), and I could only shower on the days I had my dressing changed so that the surgical tape covering the foam didn't peel off. Returning to work & driving were not recommended until the wound healed. Additionally, there was some concern with how fast I would heal due to my steroid meds for Cushing's. However, on September 14, 2015, the wound-vac was removed and I completely healed as of October 15, 2015.
Cushing's Disease is rare (only 10 to 15 people per million are diagnosed every year), but obviously it isn’t rare enough that people are never diagnosed with it. I would never wish this disease on anybody, but sometimes I wish I could just touch people and let them feel for one minute what I've gone through. I've often compared Cushing's Disease to the aftermath of a tornado. You see images of all that chaos and destruction; you feel the hopelessness and helplessness that the victims must be feeling; and you think, "Oh my gosh, how in the world are they ever going to pick up and get back to living a normal life after all that destruction?" That’s what living with Cushing's Disease is like. People that don't know how it feels think perhaps that us "Cushies" are making things up or blowing things out of proportion. No - we're not. Cushing's Disease is a very real thing.
My thoughts and prayers are with all of those who are suffering from, recovering from, and still fighting with this wretched disease. While I wish I had more knowledge of this disease decades ago for my benefit alone, I am grateful to have gone through this journey. I truly believe that God brought me to this disease in order to reach out to others and help them with their trials and tribulations related to Cushing's.
My Cushing's Disease Photo Timeline:
("Hover" your mouse over the pictures for my age & date of photo.)
RECURRENCE UPDATE!!!
It happens to the best of us. In late 2018/early 2019, I began experiencing recurrence symptoms. Unfortunately, it took an entire year and a 100 pound weight gain to convince any of my doctors, as my MRI for 2019 came back without signs of a tumor. I was devastated, but continued to fight. Eventually, I had to find a new endocrinologist who was quick to test me appropriately and diagnosed my recurrence within 2 months. I am forever grateful to her! To read all about my recurrence journey on Facebook, click "Cushing's: The Sequel"
