When Amber Denney bought life and critical condition insurance from Bank of New Zealand, she thought it would help pay her mortgage, if she ever fell so seriously ill she could not work.
But when she contracted a debilitating and life-threatening brain tumour, BNZ’s insurance proved worthless.
Denney was diagnosed with a pituitary tumour in 2020, and underwent brain surgery, several years after symptoms emerged, including rapid weight gain, muscle loss, brain fog, fatigue, depression and severe headaches.
But despite her neurosurgeon saying Denney fitted the criteria to succeed in her $52,000 claim, BNZ Life Insurance declined the claim, after taking six months to come to a decision.
As a result of her illness, Denney was unable to work, and lost the home she bought when she was 21. She wonders to this day, if the insurance money would have allowed her to save it.
At a time Denney, now aged 26 and renting in Hamilton, was losing her home, banks were working to make sure people did not lose their homes in the economic disruption of the Covid-19 pandemic.
BNZ refused to comment on whether the insurance it sold had failed Denney in her time of need. But Partners Life, which bought BNZ Life Insurance after her claim was decided has promised to take a fresh look at her case.
Denney has yet to concede defeat to her insurer, and may take a claim to the Banking Ombudsman claiming service failure by BNZ, and the Insurance and Financial Services Ombudsman over the decision by BNZ Life to decline her claim.
But she says she is speaking out to warn others that their insurance may be much more limited than they think, and fail them at their time of direst need.
Her cluster of debilitating symptoms resulting from the pituitary tumour is called Cushing’s Disease.
“I’m not the only Cushing’s person who has had this trouble with the insurance companies,” she says.
“The endocrinologist told me about all the other people who have been struggling,” says Denney, who before her illness was fit enough to climb mountains and shear sheep.
There were several critical failures of the critical condition insurance BNZ sold her, according to Denney and insurance lawyer Tim Gunn, who is helping Denney pro bono.
While the BNZ Life policy did cover pituitary tumours, there were two caveats.
First, it had to produce neurological damage, and functional impairment, which a specialist considered to be permanent.
Second, it had to be removed by a craniotomy, surgery that requires cutting through the skull.
Gunn says the requirement for a craniotomy is unreasonable, unfair and outdated.
In recent decades the primary surgical option for pituitary tumours was not a craniotomy, but keyhole surgery, which was used to save Denney’s life.
“The method of surgery to remove the tumour was the most current and accepted method,” Gunn said, and was now used in 95% of pituitary tumour surgeries.
Craniotomy surgery carries a higher risk and was not as effective, he says, and requiring it was unreasonable.
But Denney and Gunn say the policy was also fatally flawed because it could not do what she was sold the policy for in the case of a policyholder contracting a pituitary tumour.
It takes so much time for medical specialists to conclude that damage is permanent after an operation, that paying a claim in time to help save a policyholder’s home is not possible, Denney maintains.
One communication from BNZ Life dated September 2021, told Denney that despite her being diagnosed in July 2020, operated on in September 2020 during the level 4 lockdown, proof of permanency had still not been established.
Denney says she has been left with permanent memory loss, severe headaches, and other symptoms of Cushing’s Disease, and can’t understand why BNZ Life is not paying.
“It’s blatantly obvious. I’m struggling. I just don’t get it. It’s extremely unfair,” she says.
“BNZ has failed in their responsibility to ensure that Ms Denney was adequately protected,” Gunn says.
Denney says one horrified BNZ worker told her not to let the bank win.
“She advised me, it was her exact words, ‘If you have the energy to fight, fight them until the end’,” she says.
BNZ would not answer the allegations, saying only that all BNZ Life’s records had moved to Partners Life, though Denney remains a BNZ customer.
BNZ had sold the business to Partners Life, which has in turn been sold to Japanese insurer Dai-ichi Life.
Partners Life has promised to review the decision taken by BNZ Life to turn Denney’s claim down.
It said BNZ Life’s conclusion was that while the condition Denney suffered was most certainly traumatic, it was not covered under the definitions in the policy wordings.
Critical condition (often called critical illness) insurance was not designed to cover every possible health emergency, it said, but did not comment on the specific allegations Denney and Gunn have made, as it had only been alerted to them by Stuff.
It said it would contact Denney about the review of BNZ Life’s decision to decline her claim.
Partners Life says its claims philosophy is that, “if it’s grey, we pay”, and “where the medical information is unclear or conflicting, we will remove the uncertainty and simply pay your claim”.
Denney said her surgery saved her life, and her weight has dropped by 35kg.
Doctors told her in 2020 that without the surgery she would have two years to live.
“I’ve passed that two years now, so every day’s given to me now,” she says.
At its worst, Denney’s symptoms were so bad, she was unable to work for nearly two years, though her life is on the up, and she is once again dreaming about buying a home.
She has landed a job at a supportive employer in Hamilton.
I’m being tested for Cushing disease, after having some symptoms, one doctor says I don’t have it because the first Urine test is normal, but I’ve since done another urine test which is higher than the normal, I live in France the normal is 10-50 and I’m at 67 !
I’m still waiting in blood results, I’ve been suffering from pain behind my eyes like someone is pushing my eyes out , blurred vision, sinus like symptoms but not sinus infection, urine infection, skin infection, high blood pressure, fainting, headaches, headaches, extreme tiredness ! Etc etc
I’m worried that I will be pushed aside again and told it’s in my head.
I would love help in helping my doctor in the right direction… please , I’m becoming depressed and stressed that I don’t feel well and no one will help me.
This is another Golden Oldie. I’m not sure when it was last written or updated by Natalie but it was updated by me after she died April 21, 2008.
~~
Hi! My name is Natalie, I am 35 years old and I’ve been married for 15 years. I don’t have any children at this time, but we are in the process of adopting. We can hardly wait for our little one to show up on our doorstep. We live down in southern Maryland at this time. I grew up in southern Virginia on a farm. My Dad is still farming; he raises peanuts, corn and soybeans. He has had 2 battles with colon cancer and is still hanging in there. He gives me inspiration. I have my Mom and Grandmother still living home on the farm too and we get there as often as we can. My sister lives near by my parents and has 2 boys. They spend a portion of every summer with us.
There is so much to tell, I really don’t know where to start. I had my official diagnosis in Jan. of 1990. But after all of the information I have learned over the years, I fully believe that it could have started as early as childhood. We will never know for sure.
When I graduated from high school in 1983, I was a happy go lucky teenager with a steady boy friend and many friends. My first year of college was great. I had a lot of fun and thought I had made so many new friends. Joe (boyfriend then, now my husband) left for Marine Corps Boot Camp in the spring of 1984. That was hard but I adjusted fine and was glad to see him come home that summer. In the fall when it was time to go back to school I was a different person. I withdrew from my friends and I pretty much kept to myself. After a weekend visit from Joe, I slipped into a deep depression. I stopped going to class and to work. My so-called friends didn’t want anything to do with me. I started having headaches and dizzy spells. I was really scared. No one knew what I was feeling or would even try to understand. I ended up dropping out of school and went back home. I didn’t want a job; I just stayed home and did baby-sitting jobs. My nephew was born in August of 1985 and I took care of him full time until Joe and I was married in June of 1986.
On our wedding day I cried all through the picture taking. I was very happy but cried anyway. We went to the Blue Ridge Mountains for our honeymoon, I got stung by a bee, got a speeding ticket, and we had no air conditioning in our truck. It was truly one to remember. We came back and moved to North Carolina, where Joe was stationed at the time, and I cried for the next 2 weeks. I had never been that far away from home before.
As a child I had a bad case of asthma and now all of a sudden I’m having no problems. Little did I know that my body was treating itself with cortisol. In Jan. of 1987 I had a doctor’s appointment with my Allergist.
I was told then that I had High Blood pressure and to keep check on it. I was also beginning to be very emotional around this time. I would cry over nothing.
I started having migraine headaches while Joe was away on a deployment. My parents came and took me to the ER and because I had not been able to eat for 3 days and I was living in the dark because the sunlight was killing my head. Again I was told that it was High Blood pressure. Joe came home and left again in June for 6 months on the ship. I moved home and didn’t have any problems that summer. I moved back to Carolina in the fall so that I could get our house ready for Joe’s home coming. The real nerve racking part was that Joe’s ship was part of the mine sweeping going on in the Persian Gulf during 1987.
1988 was a pretty good year. Not too many problems except for headaches. But 1989 is a different story. I fell apart this year. In the spring I broke out in this strange rash that wouldn’t go away and I couldn’t find a doctor that could tell me what it was. Not long after that my periods stopped, we were really excited thinking that we were finally going to have a baby, WRONG! I went 3 months without a cycle; I still had the rash, headaches and high blood pressure. You would think that this would have alerted my OB GYN that something was wrong. Joe came home one day and found me doubled over and took me to the ER and we found out that I had kidney stones. Over all this time I am steady gaining weight. The stones passed and then tests were done and everything was fine there. Finally I decided to go to see Dermatology for the rash and was treated for severe acne. On my second visit with them the doctor took a look at my entire medical record and excused himself from the room. A few minutes later he returned with a doctor from Internal medicine, he took one look at me and said that I was the classic Cushing’s case. Then he went on to explain it to me. This was in Nov.1989. The tests began and I had a CT Scan done in Dec of that year that I didn’t get the results from until after Christmas. They showed a tumor on the pituitary and I was told to go to Portsmouth Naval Hospital right away. We took off and headed to Virginia not knowing what to expect. I was admitted the next day and had a week of peeing in a jug and lots of bloodwork. I was sent home with my surgery scheduled for Feb. 1990. Well, being the Navy, my surgeon was called away and my surgery was delayed until March.
I had transphenoidal surgery in March 1990 and they removed what they could but it had invaded the sinus cavity and they couldn’t get it all. I was sent home on hydrocortizone and had 2 episodes where my cortisol levels dropped too low and had to go the ER. Once I was weaned off I was okay and actually felt pretty good. I had monthly 24-hour urine tests run and they began to come back high again. I was put back in the hospital in Portsmouth and all the tests came back normal. I was sent home and a couple of months later they were high again. Again I went to the hospital and sent home normal. What’s going on here? The next time this happened I demanded that something be done. The head of the Endo dept. (I won’t mention any names, but Handiman knows him personally) tried to tell me that I was faking it so that my husband wouldn’t have to go the Desert Storm. I talked on of the interns to schedule me for an appt with the radiation oncologist and they determined that the tumor was still growing and that I needed to have radiation. Joe was scheduled to go to the desert but he was pulled from that duty and assigned to recruiter’s asst. and we moved to Virginia to my parent’s home for 60 days while I underwent 31 days of traditional radiation to the pituitary. I went back to Carolina feeling more at ease that something had been done. The rash went away but I continued to gain weight and still had Blood pressure problem, but was now being treated for it.
I was doing really well and Joe went away again for 6 months in Oct.1991. He was gone that Christmas, which was hard but I handled it ok. When he returned he had orders to go to Atlanta, GA. I was doing well and we packed up and went. I didn’t like the endo I saw there so I continued my 6-month check ups in Portsmouth when went home to visit.
In the summer of 1994, I started having problems with my left eye and thought it was allergies. I went to the eye doctor and after examining me he sent me to a Neuro Ophthalmologist who ordered a MRI and guess what The Tumor’s back! It was pressing on the optic nerve causing what they called a third nerve palsy. I was treated with medication until Jan 1995, hoping that the tumor would shrink but it got worse. I began to have double vision and my left eye closed completely. In the spring of 95 I again underwent Transphenoidal surgery at Emory University under Dr. Oyesiku. He was great. I also had a great endo there, Dr. Lewis Blevins (he is at Vanderbilt in Tenn. Now). They still could not retract the entire tumor so I went back in August of that year and had Sterotactic Radiation Surgery. That was a one time radiation and it was a real experience. I had a metal Halo drilled into my head and I had CT scans and MRIs done with it one to determine the exact location of the tumor, then I was placed in a chair that spun in very slow circles while the radiation was being done. When I arrived back in my room they couldn’t find the key to take the halo off, so I had to wear it for another 2 hours until they found it.
It has now been almost 6 years since the last radiation and my current MRIs show some shrinkage of the tumor. I am currently battling high cortisol levels again but I think if we can find the right dosage of medicine it will level off. I am currently taking meds for: thyroid, high blood pressure, estrogen, diabetes, medication to control cortisol, allergy medication and every 3 months I take hormones to make me have a menstrual cycle. But over all I am doing OK.
My husband is out of the Marine Corps now and we live in Maryland. We are in the process of Adopting. We are really excited about this and can hardly wait to get our little one. My husband and Family have been so supportive of me through all of these years and I don’t know what I would have done without them and my close friends.
I feel like I have made many friends here also. This site has been a great help to me and I hope that my story can help someone else.
Take Care everyone!
Natalie
MaryO Note: Natalie had a BLA in March, 2008. She died April 21, 2008. In Memoriam
Natalie Fay
Monday, April 21, 2008
2001 Cushing’s Lunch. From
left: Joe (Natalie’s husband), Natalie and Linda
Natalie Fay (Natalie65), died April 21, 2008. She was only 42 and had recently had a BLA. I first
met Natalie at a local lunch in November of 2001 and have seen her seval times
since then.
Natalie started the original “Dammit Dolls” that circulated
around the country until people refused to pass them along anymore.
Dammit Doll.
Natalie also made counted cross-stitch
Cushing’s Awareness Pins:
going to UVA I am going for my first visit with Dr. Hanks at
UVA on the 20th. I will also see Dr. Vance that day. I haven’t seen her before
either. I am planning on having bilateral adrenal surgery in March. I am a
little nervous about this, but it is going to be a positive thing I hope. I
would love to hear from anyone who has had this done so that I will have an idea
of what to expect. after surgery.
I’m back! It has been a
very slow week and I’m just satrting to feel like moving around again. I had BLA
on the 10th and came home on friday. My parents have taken my boys (3 & 6)
home to Va. I have missed them so much this week, but I think it was the right
thing to do. I don’t know how I would have done it without them. I am still very
sore and tired at times, but I’m coming along. Sorry this has taken so long to
get out to you guys, I thought things were taken care of but I was wrong. Oh
Well! I’m doing good and I’ll keep in touch. Thanks for all of your thoughts and
prayers.
Natalie
Message Board Signature:
pit surgery 1990
traditional 30 days
radiation 1990
pit surgery 1995
sterotactic radiation surgery 1995
2004
still have remaining tumor
cortisol levels still off balance
BLA March 10,
2008
Our first local DC area Cushie lunch November 17, 2001 with Linda, Jayne, me and Natalie – all in Cushe Colors [Photographer: Robin]
Our first local DC area Cushie lunch November 17, 2001 with Jayne, Linda, Natalie, MaryO and Dianne [Photographer: Robin]
Our first local DC area Cushie lunch November 17, 2001 with Jayne, Linda, Natalie, MaryO and Dianne [Photographer: TomO]
Our second local DC area Cushie lunch February 9, 2002 all the families [Photographer: Robin]
Our second local DC area Cushie lunch February 9, 2002 with Jayne, Marcia, Heather, Natalie and MaryO [Photographer: Robin]
Our second local DC area Cushie lunch February 9, 2002 with Jayne, Marcia, Heather, Natalie and MaryO [Photographer: Robin]
Our second local DC area Cushie lunch February 9, 2002 with Jayne, Marcia, Heather, Natalie and MaryO. LynneInVa made the roses for us from candles. [Photographer: Robin]
Our next local DC area Cushie lunch May 4, 2002 with lots of us! [Photographer: Robin]
Our next local DC area Cushie lunch May 4, 2002 with lots of us! [Photographer: Robin]
Our next local DC area Cushie lunch May 4, 2002 with lots of us! [Photographer: Robin]
Our next local DC area Cushie lunch May 4, 2002 with lots of us! [Photographer: Robin]
Our next local DC area Cushie lunch May 4, 2002 with Pat, MaryO, Ruth, Natalie, Susan, Jayne [Photographer: TomO]
Our next local DC area Cushie lunch May 4, 2002 with Pat, MaryO, Ruth, Natalie, Susan, Jayne [Photographer: Robin]
Our next local DC area Cushie lunch May 4, 2002 with Joe, Jed and Catherine [Photographer: Robin]
Our three families: Tom and MaryO, Natalie and Joe, Robin and Jayne…and kids [Photographer: a waitress]
Our three families: Tom and MaryO, Natalie and Joe, Robin and Jayne…and kids [Photographer: a waitress]
TomO being silly, stealing Catherine’s nose. [Photographer: Robin]
Courtland, Virginia– Natalie Grissom Fay, 42, passed away April 21, 2008 at St. Mary’s Hospital in Leonardtown, Md. She was born in Petersburg, Va, a daughter of Edward Scott and Nan Lucy Grissom and was a 1983 graduate of Southampton High School. Natalie actively supported several Cushing Support Groups, and was a member of the Patuxent Presbyterian Church. Surviving in addition to her parents is her husband, Joseph P. Fay; two sons, Joseph Edward (Jed) Fay and Nathan Lee Fay all of Hollywood, Md.; one sister, Annette G. Stephenson of Courtland, Va.; two nephews, Scott and Vance Stephenson; and her father-in-law, Edward K. Fay and wife, Sunee, of Deltona, Fl. The funeral will be conducted at 2 pm Friday at Wright Funeral Home with the Rev. Edmund Ellis officiating. Burial will follow in Riverside Cemetery. The family will receive friends from 7 to 9 pm Thursday at the home of Edward and Nan Grissom, 16046 Wakefield Road, Courtland, and suggest that in lieu of flowers, memorials may be made to Cushings Help, c/o Mary O’Connor, 4094 Majestic Lane, #328, Fairfax, Va. 22033.
This is another Golden Oldie. I’m not sure when it was last written or updated by Natalie but it was updated by me after she died April 21, 2008.
~~
Hi! My name is Natalie, I am 35 years old and I’ve been married for 15 years. I don’t have any children at this time, but we are in the process of adopting. We can hardly wait for our little one to show up on our doorstep. We live down in southern Maryland at this time. I grew up in southern Virginia on a farm. My Dad is still farming; he raises peanuts, corn and soybeans. He has had 2 battles with colon cancer and is still hanging in there. He gives me inspiration. I have my Mom and Grandmother still living home on the farm too and we get there as often as we can. My sister lives near by my parents and has 2 boys. They spend a portion of every summer with us.
There is so much to tell, I really don’t know where to start. I had my official diagnosis in Jan. of 1990. But after all of the information I have learned over the years, I fully believe that it could have started as early as childhood. We will never know for sure.
When I graduated from high school in 1983, I was a happy go lucky teenager with a steady boy friend and many friends. My first year of college was great. I had a lot of fun and thought I had made so many new friends. Joe (boyfriend then, now my husband) left for Marine Corps Boot Camp in the spring of 1984. That was hard but I adjusted fine and was glad to see him come home that summer. In the fall when it was time to go back to school I was a different person. I withdrew from my friends and I pretty much kept to myself. After a weekend visit from Joe, I slipped into a deep depression. I stopped going to class and to work. My so-called friends didn’t want anything to do with me. I started having headaches and dizzy spells. I was really scared. No one knew what I was feeling or would even try to understand. I ended up dropping out of school and went back home. I didn’t want a job; I just stayed home and did baby-sitting jobs. My nephew was born in August of 1985 and I took care of him full time until Joe and I was married in June of 1986.
On our wedding day I cried all through the picture taking. I was very happy but cried anyway. We went to the Blue Ridge Mountains for our honeymoon, I got stung by a bee, got a speeding ticket, and we had no air conditioning in our truck. It was truly one to remember. We came back and moved to North Carolina, where Joe was stationed at the time, and I cried for the next 2 weeks. I had never been that far away from home before.
As a child I had a bad case of asthma and now all of a sudden I’m having no problems. Little did I know that my body was treating itself with cortisol. In Jan. of 1987 I had a doctor’s appointment with my Allergist.
I was told then that I had High Blood pressure and to keep check on it. I was also beginning to be very emotional around this time. I would cry over nothing.
I started having migraine headaches while Joe was away on a deployment. My parents came and took me to the ER and because I had not been able to eat for 3 days and I was living in the dark because the sunlight was killing my head. Again I was told that it was High Blood pressure. Joe came home and left again in June for 6 months on the ship. I moved home and didn’t have any problems that summer. I moved back to Carolina in the fall so that I could get our house ready for Joe’s home coming. The real nerve racking part was that Joe’s ship was part of the mine sweeping going on in the Persian Gulf during 1987.
1988 was a pretty good year. Not too many problems except for headaches. But 1989 is a different story. I fell apart this year. In the spring I broke out in this strange rash that wouldn’t go away and I couldn’t find a doctor that could tell me what it was. Not long after that my periods stopped, we were really excited thinking that we were finally going to have a baby, WRONG! I went 3 months without a cycle; I still had the rash, headaches and high blood pressure. You would think that this would have alerted my OB GYN that something was wrong. Joe came home one day and found me doubled over and took me to the ER and we found out that I had kidney stones. Over all this time I am steady gaining weight. The stones passed and then tests were done and everything was fine there. Finally I decided to go to see Dermatology for the rash and was treated for severe acne. On my second visit with them the doctor took a look at my entire medical record and excused himself from the room. A few minutes later he returned with a doctor from Internal medicine, he took one look at me and said that I was the classic Cushing’s case. Then he went on to explain it to me. This was in Nov.1989. The tests began and I had a CT Scan done in Dec of that year that I didn’t get the results from until after Christmas. They showed a tumor on the pituitary and I was told to go to Portsmouth Naval Hospital right away. We took off and headed to Virginia not knowing what to expect. I was admitted the next day and had a week of peeing in a jug and lots of bloodwork. I was sent home with my surgery scheduled for Feb. 1990. Well, being the Navy, my surgeon was called away and my surgery was delayed until March.
I had transphenoidal surgery in March 1990 and they removed what they could but it had invaded the sinus cavity and they couldn’t get it all. I was sent home on hydrocortizone and had 2 episodes where my cortisol levels dropped too low and had to go the ER. Once I was weaned off I was okay and actually felt pretty good. I had monthly 24-hour urine tests run and they began to come back high again. I was put back in the hospital in Portsmouth and all the tests came back normal. I was sent home and a couple of months later they were high again. Again I went to the hospital and sent home normal. What’s going on here? The next time this happened I demanded that something be done. The head of the Endo dept. (I won’t mention any names, but Handiman knows him personally) tried to tell me that I was faking it so that my husband wouldn’t have to go the Desert Storm. I talked on of the interns to schedule me for an appt with the radiation oncologist and they determined that the tumor was still growing and that I needed to have radiation. Joe was scheduled to go to the desert but he was pulled from that duty and assigned to recruiter’s asst. and we moved to Virginia to my parent’s home for 60 days while I underwent 31 days of traditional radiation to the pituitary. I went back to Carolina feeling more at ease that something had been done. The rash went away but I continued to gain weight and still had Blood pressure problem, but was now being treated for it.
I was doing really well and Joe went away again for 6 months in Oct.1991. He was gone that Christmas, which was hard but I handled it ok. When he returned he had orders to go to Atlanta, GA. I was doing well and we packed up and went. I didn’t like the endo I saw there so I continued my 6-month check ups in Portsmouth when went home to visit.
In the summer of 1994, I started having problems with my left eye and thought it was allergies. I went to the eye doctor and after examining me he sent me to a Neuro Ophthalmologist who ordered a MRI and guess what The Tumor’s back! It was pressing on the optic nerve causing what they called a third nerve palsy. I was treated with medication until Jan 1995, hoping that the tumor would shrink but it got worse. I began to have double vision and my left eye closed completely. In the spring of 95 I again underwent Transphenoidal surgery at Emory University under Dr. Oyesiku. He was great. I also had a great endo there, Dr. Lewis Blevins (he is at Vanderbilt in Tenn. Now). They still could not retract the entire tumor so I went back in August of that year and had Sterotactic Radiation Surgery. That was a one time radiation and it was a real experience. I had a metal Halo drilled into my head and I had CT scans and MRIs done with it one to determine the exact location of the tumor, then I was placed in a chair that spun in very slow circles while the radiation was being done. When I arrived back in my room they couldn’t find the key to take the halo off, so I had to wear it for another 2 hours until they found it.
It has now been almost 6 years since the last radiation and my current MRIs show some shrinkage of the tumor. I am currently battling high cortisol levels again but I think if we can find the right dosage of medicine it will level off. I am currently taking meds for: thyroid, high blood pressure, estrogen, diabetes, medication to control cortisol, allergy medication and every 3 months I take hormones to make me have a menstrual cycle. But over all I am doing OK.
My husband is out of the Marine Corps now and we live in Maryland. We are in the process of Adopting. We are really excited about this and can hardly wait to get our little one. My husband and Family have been so supportive of me through all of these years and I don’t know what I would have done without them and my close friends.
I feel like I have made many friends here also. This site has been a great help to me and I hope that my story can help someone else.
Take Care everyone!
Natalie
MaryO Note: Natalie had a BLA in March, 2008. She died April 21, 2008. In Memoriam
Natalie Fay
Monday, April 21, 2008
2001 Cushing’s Lunch. From
left: Joe (Natalie’s husband), Natalie and Linda
Natalie Fay (Natalie65), died April 21, 2008. She was only 42 and had recently had a BLA. I first
met Natalie at a local lunch in November of 2001 and have seen her seval times
since then.
Natalie started the original “Dammit Dolls” that circulated
around the country until people refused to pass them along anymore.
Dammit Doll.
Natalie also made counted cross-stitch
Cushing’s Awareness Pins:
going to UVA I am going for my first visit with Dr. Hanks at
UVA on the 20th. I will also see Dr. Vance that day. I haven’t seen her before
either. I am planning on having bilateral adrenal surgery in March. I am a
little nervous about this, but it is going to be a positive thing I hope. I
would love to hear from anyone who has had this done so that I will have an idea
of what to expect. after surgery.
I’m back! It has been a
very slow week and I’m just satrting to feel like moving around again. I had BLA
on the 10th and came home on friday. My parents have taken my boys (3 & 6)
home to Va. I have missed them so much this week, but I think it was the right
thing to do. I don’t know how I would have done it without them. I am still very
sore and tired at times, but I’m coming along. Sorry this has taken so long to
get out to you guys, I thought things were taken care of but I was wrong. Oh
Well! I’m doing good and I’ll keep in touch. Thanks for all of your thoughts and
prayers.
Natalie
Message Board Signature:
pit surgery 1990
traditional 30 days
radiation 1990
pit surgery 1995
sterotactic radiation surgery 1995
2004
still have remaining tumor
cortisol levels still off balance
BLA March 10,
2008
Our first local DC area Cushie lunch November 17, 2001 with Linda, Jayne, me and Natalie – all in Cushe Colors [Photographer: Robin]
Our first local DC area Cushie lunch November 17, 2001 with Jayne, Linda, Natalie, MaryO and Dianne [Photographer: Robin]
Our first local DC area Cushie lunch November 17, 2001 with Jayne, Linda, Natalie, MaryO and Dianne [Photographer: TomO]
Our second local DC area Cushie lunch February 9, 2002 all the families [Photographer: Robin]
Our second local DC area Cushie lunch February 9, 2002 with Jayne, Marcia, Heather, Natalie and MaryO [Photographer: Robin]
Our second local DC area Cushie lunch February 9, 2002 with Jayne, Marcia, Heather, Natalie and MaryO [Photographer: Robin]
Our second local DC area Cushie lunch February 9, 2002 with Jayne, Marcia, Heather, Natalie and MaryO. LynneInVa made the roses for us from candles. [Photographer: Robin]
Our next local DC area Cushie lunch May 4, 2002 with lots of us! [Photographer: Robin]
Our next local DC area Cushie lunch May 4, 2002 with lots of us! [Photographer: Robin]
Our next local DC area Cushie lunch May 4, 2002 with lots of us! [Photographer: Robin]
Our next local DC area Cushie lunch May 4, 2002 with lots of us! [Photographer: Robin]
Our next local DC area Cushie lunch May 4, 2002 with Pat, MaryO, Ruth, Natalie, Susan, Jayne [Photographer: TomO]
Our next local DC area Cushie lunch May 4, 2002 with Pat, MaryO, Ruth, Natalie, Susan, Jayne [Photographer: Robin]
Our next local DC area Cushie lunch May 4, 2002 with Joe, Jed and Catherine [Photographer: Robin]
Our three families: Tom and MaryO, Natalie and Joe, Robin and Jayne…and kids [Photographer: a waitress]
Our three families: Tom and MaryO, Natalie and Joe, Robin and Jayne…and kids [Photographer: a waitress]
TomO being silly, stealing Catherine’s nose. [Photographer: Robin]
Courtland, Virginia– Natalie Grissom Fay, 42, passed away April 21, 2008 at St. Mary’s Hospital in Leonardtown, Md. She was born in Petersburg, Va, a daughter of Edward Scott and Nan Lucy Grissom and was a 1983 graduate of Southampton High School. Natalie actively supported several Cushing Support Groups, and was a member of the Patuxent Presbyterian Church. Surviving in addition to her parents is her husband, Joseph P. Fay; two sons, Joseph Edward (Jed) Fay and Nathan Lee Fay all of Hollywood, Md.; one sister, Annette G. Stephenson of Courtland, Va.; two nephews, Scott and Vance Stephenson; and her father-in-law, Edward K. Fay and wife, Sunee, of Deltona, Fl. The funeral will be conducted at 2 pm Friday at Wright Funeral Home with the Rev. Edmund Ellis officiating. Burial will follow in Riverside Cemetery. The family will receive friends from 7 to 9 pm Thursday at the home of Edward and Nan Grissom, 16046 Wakefield Road, Courtland, and suggest that in lieu of flowers, memorials may be made to Cushings Help, c/o Mary O’Connor, 4094 Majestic Lane, #328, Fairfax, Va. 22033.
Am still on 3mg prednisone daily. Lots of joint muscle aches, headaches, hair falling out, dry skin, split nails… sleeping a bit better but tired during day,can’t walk long or stand without feeling like I’ll hit the ground any minute.
Hi and good evening new here So im EvE7070 and oh my were do i start.
I was finally diagnosed with Cushing‘s 2015 To wich i had no clue what it was and how horrible it would change my life.
But lets start before when it first started I was a gym rat and eat very lil and would do fasting often and one day my menstrual cycle changed and I stop getting my periods and after that I gained about 60 pounds out of nowhere and I decided to see a doctor who told me that I had a hormone deficiency and they put me on something called glucophage which instead of making me lose weight made me gain another 30 lb within the few months of taking it and nobody knew what was wrong with me or how to treat me and I was very depressed for so long because every time I would see a doctor they would say you’re obese and you need to get on a diet and I would cry and tell them I don’t eat I exercise everyday and I don’t understand what is happening to my body i all of a sudden had every disease you could think of and know doctor could tell me what was wrong
i even got a allergies to peanuts which I had never had a problem with before crazy right
So finally after so many yrs i stated getting headaches to witch they said migraines and then my eyesight started to get affected and finally they said no maybe it’s just a sinus infection to where I had to have an X-ray done of my sinuses and that’s when they saw the tumor and my pituitary gland
So had surgery 2015 was on remission until the beginning of this year I started getting headaches again and my eyesight was starting to mess up and decided to go back to the endocrinologist and now they tell me that my cushing‘s is back and I’m hoping that my MRI comes out okay and I don’t have a tumor again but I don’t know what the odds of that happening again of another tumor this is the hardest thing that I’ve had to go through and I’m having a really hard time trying to adjust again to everything that’s going on with my body they say the second time around is worse than the first time and so far it’s true emotionally my depression is at its highest
I’m having problems with coordination brain fog concentration problems forgetting what i was taking about and im really scared I won’t be able to deal with it this time It took me so long to get back to wat ever normal is and now im back here again
i had the pituitary surgery. They said i am cured (of course it could come back) but the day after surgery my acth level was 3.7 and the next day it was 1. They consider that a cure.
it is a very painful recovery for me and i am documenting each day.
The headaches and pressure in my head were so awful and painful but have now on day 6 subsided. They had to cut my septum to get through and i had a bone spur too so maybe that added to it…my nose was, still is i am sure, packed and i can’t blow my nose till July 12! The nausea was bad too. The cortisol withdrawal hasn’t been so horrible yet. They have me on a taper program of each week taking less.
The tumor was towards the left side and the surgeon who was Dr. Van Gompel at Mayo was aggressive in the amount of tissue he took out as he said it was soft. He wanted a “home run”. I asked after if he got the home run and he said yes.
The whole Mayo experience was strange. You don’t really get to call and speak to the doctor after you see them…you get a “desk” and a message gets sent. The endocrinologist is the only one who calls back personally but I guess that is a lot. I would highly recommend her and don’t know all her info except her name is Dr. Irina Bancos at the Mayo clinic. Things just fell into place there. As you know I was only scheduled for the IPSS but when she saw how symptomatic I was and all my levels she picked up the phone on a Tuesday and had me scheduled for surgery Friday morning. A one stop shop. I was scared and there alone but got through it.
The next 3-12 months will be difficult. I am currently on some pain meds and muscle relaxers but in touch with my sponsor daily and we decided I don’t have to be a martyr. I just need to check myself and get off them as soon as I get these headaches under control.
Mary, I’d like to stay active on your site. I’ve learned so much that helped prepare me for the doctors appointments and the procedures that I’d like to give back anything I can in the way of my experience of living with the symptoms and not knowing what was wrong with me to fighting for a diagnosis to the cure. Please let me know the best way I can do this and you may post this if you’d like. Maybe edit out the pain meds and sponsor part as I don’t think many would relate to that but who knows.
For over theee years I’ve had 10-30 anxiety type attack’s a day. I break into a sweat, turn bright red and my heart races. These attacks happen immediately after I am anxious about something so I was always skeptical when people called them hot flashes.
I’ve put on 30 pounds although I eat extremely healthy with limited sugar, flour or dairy. My cholesterol is up to 245. My libido is completely dead which is not the norm at all. I have a shawl of fat on my back with a fat bump on the back of my neck. My stomach is so big I’m embarrassed to go out. My legs have started getting fat on them which never happens.
I’m hyper sensitive to smoke and chemicals and mold. I get incapacitating headaches frequently. I take feoricet, ice and have to go to sleep. I have no desire to exercise even though I grew up playing the tennis circuit. I have huge difficulty concentrating. I cannot remember even the simplest numbers. I feel like my vision is getting worse even though I wear glasses all the time.
I’m not the happy, gregarious person I once was and I rarely go out anymore. I want my life back.
I live in N.J. if anyone knows of a Dr who might be able to help me I would be most appreciative. I wish you all good health.
I’m 16, going on 17… and I think I’m close to being diagnosed with Cushings. Quite frankly its scaring me so I’ll just do my best to get my story out there.
I’ve always kind of been on the heavier side compared to other people my age, even when I was really little. However, my weight has shot up from 60 kg to about 110 kg in 2-4 years, and my already awful confidence is basically shattered.
When I got my growth spurt I got severe stretch marks, but I thought it was nothing, and my parents attributed it to me growing so quickly or something along those lines.
I’m in constant pain, I’ve barely been to school since September 2016. I can barely move half the time due to severe exhaustion and pain, I fear for my future.
We originally thought all the pain was from gluten intolerance, which I was diagnosed with, late 2015. We completely cut gluten out of my diet, but instead of getting better, my symptoms got worse. The exhaustion lead to a diagnosis of chronic fatigue in mid 2016.
On a whim I’m guessing, my doctor ordered tests for ACTH when he got told of my worsening symptoms. It was much higher than it should’ve been, and I got forwarded to an endocrinologist, more tests, ect… I need to go back in a few days for the results, I’m becoming more and more nervous the more I wait.
My already bad mental health has taken a hit, as well. I was never really mentally okay due to a horrible string of things happening to me in my childhood, but when this popped up my illnesses got 10x worse, to the point I’ve harmed myself and attempted suicide. Even when I feel okay enough physically, I can’t go outside without being scared something will happen to me or that everyone is judging me for how I look. I was on medication for depression, but I was able to function even less when I was on it, so I was taken off of it. I have depression, anxiety, PTSD, and other disorders which have been diagnosed and they’ve all worsened in some way.
My schooling has taken an even bigger hit, I can’t think right due to disturbed sleep, general tiredness and headaches. I used to be a fairly good student and before I left, my grades had dropped significantly, my teachers and peers were looking down on me for how far I had fallen.
I used to constantly blame myself for my weight, I’ve hated it since I was very little, so at least this gives me a small bit of relief that its not completely my fault.
I just want to get my life back, I have my whole life ahead of me, but my teenage years are basically being stolen from me like I had my childhood stolen. While everyone else my age worries about tests I worry on if I can ever move out of my house or even walk to the shops again. It feels wrong and cruel. My symptoms have suddenly gotten much worse and I’ve developed new ones, and I honestly get more scared by the day.
Everyone else’s posts give me a tiny bit of hope for the future, I just hope I can one day live like everyone else does and not be weighed down completely by illnesses. It will be a slow road, but I just hope I can get there in the end.
Thank you for reading this to the end if you have, sorry if its just a jumble of words. ^^;
Hi there. 27 year old female, never had kids. It’s been an awfully long couple years and I’ve been researching and reading all you lovely people’s bios on pituitary tumours, Cushing’s disease and Acromegaly for about that long.
My symptoms onset at a time where my lifestyle was out of control. I was drinking heavily, using drugs and didn’t have a care in the world. Or so I thought. At the time of my heaviest use (cocaine) I started having strange laundry list of symptoms.
Pressure headaches
Pain in my abdomen
Acid Reflux
Excess hair growth (abdominal, face)
Purple stretch marks on my abdomen
Weight gain of approximately 30lbs in a month (distributed in only my trunk/abdomen)
Swelling of arms, face (around eyes too) sore jaw, enlarged tongue (ridges on the sides, from my teeth)
Swelling of hands, feet & legs (increased foot size from size 7 to 8)
Exhaustion
Hair loss on scalp
Itchy, sensitive skin that looks very thin (see-through almost, blue veins very prominent all over body) skin redness as well, large pores. Dull eyes.
Fatty deposit on the back of my neck
Collar bones no longer visible
Diagnosed with anxiety, bipolar disorder and ADHD
Memory loss, brain fog
Irregular menstrual cycles and increased pain
Tunnel vision at times and blurred vision. Sensitivity to sunlight.
At the time, I was so messed up my perception of reality was pretty skewed. The combination of my lifestyle and all the symptoms mentioned above motivated me to get clean (a year and a half so far woohoo!) I knew something was wrong and I needed to figure out my baseline without substance abuse to get to the bottom of it. At my lowest point I met up with my parents who I hadn’t seen in a month and they commented on how different I looked. One of my friends from narcotics anonymous hooked me up with a great physician as I didn’t have a family doctor. I was determined to get to the bottom of all this.
When meeting with my new family doctor (after getting sober) all of the focus was put onto my recovery and mental health. Seeing as she didn’t know me beforehand she didn’t know the petite, energetic person I used to be. I voiced my concern about my physical changes as well as my mental ones. I was referred to a psychologist. Diagnosed with bipolar disorder, depression and anxiety and prescribed meds for all of the above. The interesting thing is I didn’t have these problems before the physical symptoms onset. This was followed by countless ER visits for panic attacks, being dismissed countless times for strange physical symptoms that every medical professional attributed to my history of drug use and mental health. I believed them at the time. I was also diagnosed with TMJ disfunction and started seeing a chiropractor and massage therapist with no improvement.
The year that followed was the most challenging of my life. I thought I was going crazy. I tried eating an extremely healthy dairy free, wheat free, exercising constantly with no change. Seeing various doctors, explaining my symptoms only to get basic bloodwork done and sent on my way. It wasn’t until I decided to get off my psychiatric meds and focus on finding a diagnosis for my physical ailments that things started to change. I visited the ER and the doctor on call actually listened, he referred me to a rapid assessment internist. To date I have had a thyroid panel, hormone panel, all basic bloodwork, thyroid ultrasound, abdominal and pelvic ultrasound, cortisol 8am test, 24 hour urinary cortisol- all came back within normal range. I have been tested for angioedema, (neg) referred to an allergist, dermatologist and endocrinologist.
When I saw the endocrinologist he basically said “I see people with your symptoms all the time and there is never a diagnosis, so you’ll probably have to live with this” I was instantly worried and heartbroken with that response. He ordered some tests, ACTH, another 24 hour urine, T3 T4, DHEA-SO4. I’m waiting on these results now. Saw my internist again after the endocrinologist as he also ordered a prolactin and ACTH test which I hadn’t obtained the results from yet. ACTH was slightly elevated as well as prolactin. (High) not by very much. He ordered a CT scan of my head which I have to wait a month for (he said possible hyper prolactinoma of the pituitary). I’ve asked to have my growth hormone (IGF-1) levels checked, endo says “nope you don’t have Acromegaly”
I am trying to stay strong but I’m on the verge of losing home based my business as I’m a hairstylist and am starting to develop tremors in my hands, I can barely get up in the morning, I feel as though no one understands what I’m going through. I have a sense of urgency within me to find a diagnosis, my body is screaming at me that something is very wrong. My symptoms above increase in severity by the day. Have any of you diagnosed with Cushings out there experienced only slightly elevated ACTH results or prolatcin? I was also curious if anyone has an enlarged/ swollen tongue as a form an ACTH secreting tumour, I’ve tried to find information on it but only points to an acromegalic symptom. Something inside of me is telling me this is either pituitary or adrenal related. I can’t help but wonder if my drug use somehow stimulated my pituitary.
My personal life is non existent, I have isolated myself from my friends who no longer reach out or accept me (even though I have attempted to confide in them). I feel as though everyone but my family thinks I’m completely out to lunch. Just want to thank everyone on this site for sharing their stories, when I’m feeling hopeless and at a dead end, reading your bios are the only thing that is keeping me going and pushing for a diagnosis!
Recent Comments