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In Day 9 on April 9, 2015, I wrote about how we got the Cushing’s colors of blue and yellow. This post is going to be about the first Cushing’s ribbons. http://cushieblog.files.wordpress.com/2012/04/janice-ribbon.jpg?w=500 I was on vacation in September, 2001 when SuziQ called me to let me know that we had had our first Cushie casualty (that we knew about). The image at the top of the page shows the first blue and yellow ribbon which were worn at Janice’s funeral. When we had our “official ribbons” made, we sent several to Janice’s family. Janice was the first of us to die but there have been more, way too many more, over the years. I’ll write a bit more about that on Day 21.
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November 4, 2015 Stacy had two pituitary surgeries, radiation and an adrenalectomy. She died of an adrenal crisis on November 4, 2015. Read more at https://cushingsbios.com/2021/11/04/in-memory-of-stacy-ollenberger-november-4-2015-2/
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A CORONER has recorded a verdict of accidental death at the inquest held into the death of a 40-year-old Wrexham mother. Marie Richardson, of Bryn Hafod, died in March at the Maelor Hospital. A post mortem examination found that she had died as a result of a haemorrhage involving the pituitary gland, which plays a key role in the body's hormonal system. The inquest was told a post mortem examination had been conducted by Dr Anthony Burdge. Giving evidence, Dr Burdge said that it was probable the bleeding had been caused as a result of thinning of the blood and not a trauma such as a fall. Contributory factors in Mrs Richardson's death had been Cushing's disease, a very rare condition involving a hormone disorder, and bronchial pneumonia. The court was told by Mrs Richardson's husband, Andrew, that his wife had started to experience ill health, including swollen legs and constant backache. Her mobility was badly affected. Mrs Richardson was admitted to the Maelor Hospital. Consultant physician Dr Stephen Stanaway said that as part of the treatment, Mrs Richardson received a small dose of a blood-thinning drug to help ensure she did not fall victim to clots. She had been given a scan involving the pituitary and there was no evidence of a tumor. It transpired the post-mortem had found Mrs Richardson did have a tumor, which had experienced bleeding. Dr Stanaway said that Mrs Richardson had not liked the scanning process and moved at one point – it was important for patients to remain still. Acting coroner John Gittins asked if Mrs Richardson would have been administered with blood thinner if the tumour had been known about at the time of treatment. Dr Stanaway said it would have to be a balanced decision but he felt that she would have been. Legal representatives for Mrs Richardson's family and the NHS Trust were present at the inquest. Dr Stanaway was asked a series of questions about whether anything further could have been done about Mrs Richardson's treatment while at the Maelor. He said that with hindsight the only potential other avenue may have been if she had been given steroids. But Dr Stanaway stressed he doubted this would have been successful, emphasizing Mrs Richardson was a very poorly woman and it would be impossible to say that administering steroids would have saved her. Recording his verdict of accidental death Mr Gittins emphasized: "This is not an indication of responsibility, blame or judgment. "That is not my jurisdiction. My very sincere condolences go to the family." HOME | Sitemap | Adrenal Crisis! | Abbreviations | Glossary | Forums | Donate | Bios | Add Your Bio | Add Your Doctor | MemberMap | CushieWiki
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A Golden Oldie We sadly learned that Liz died in March 2012 at the age of 45. She was an active member of the Cushing’s Help Message Boards. She had a photo gallery there. The photo below is from that gallery. The image at left is from 2002. Liz wrote in her bio: Hello, I’m from Hampton, just outside London. Same old story – at least 6 years of various illnesses, including four operations for various crap (kidney stones, gallbladder removal, and 2 cysts on my coccyx) I then went from being very skinny (even after childbirth) to very fat in about a year (from 7.5 stones to 13 stones). You could roll me down our local hill! I wear maternity clothes as my tum is so disproportionate to my legs & arms (size 26 vs size 12!). My face, chest, neck and back look like someone’s put padding in, and my nice red glow brings all sort of compliments about how healthy i look, grr! I’ll post some photos later. So far, a left adrenal tumor has turned up, but I have abnormally high ACTH (60) with a highish cortisol of about 600. This apparently implies a pituitary source – but the pituitary MRI was clear. I’m waiting on a second one with gadolinium this time, but here in London MRIs take AGES. The wait at our local hospital is currently 10 months. In the meantime, I’m frustrated and feeling lousy and v tired. I have to work full time (luckily I’m an accountant, not something overly physical) as I’m a single mum to a lovely 8 year old girl who does not deserve all this. The guilt eats me up, but she is thankfully not the outward bound type! Walking is a struggle as my legs seem to suddenly buckle on me, and sitting up without support at say the hairdressers or a restaurant is really difficult. So my (thinning) hair’s a mess and I don’t eat out much! I veer about – someone at work told my boss I couldn’t walk in a straight line! Highly amusing as I haven’t touched a drop in ages! Other symptoms that have developed more recently include interimittently high blood sugar, intermittently high blood pressure, have to shave every day, horrid night and day sweats, red marks up my arms, but none on my body, intermittently rotten swollen ankles and feet, recurrently horrid kidney stones, and of course, an attractive buffalo hump (moo). And the final insult – can’t get into any of my shoes any more so shuffle about at work in my oversize carpet slippers. Very popular amongst my grey accountant colleagues. As so many of the symptoms are intermittent, the endo says he is convinced it is cushing’s, but cylical, due to (again) interimittent high blood cortisol and ACTH, and non suppression on three low dose dex tests. Then the first 24 hr ufc came back normal which was very frustrating. I’m not particularly religious but i pray he won’t give up on me as it is a long journey compared to the diagnosis of other equally horrid diseases. Feel quite isolated from my mates and lovely mum, although they are trying hard to be supportive – I’m surprised my mood swings haven’t frightened them all off lately. It’s so difficult to explain how rough it feels to take part in normal activities, especially when every symptom is something most people consider they have in everyday life to some degree. As well as the physical exhaustion/pain/weakness, my body image distresses me enormously. Recurrent kidney stones are pretty painful too (but not as bad as childbirth as a lot of men claim!). Hope to be there soon. Great to read all your stories and know that so many of you know how it all feels – and have felt it for umpteen years too. All the best. Liz Update April 21, 2005. Following dex/CRH test, which even included a dexamethasone assay to make sure the levels were adequate (took forever to come back from the lab), my endo confirmed cushings. The bad news is I need the IPSS which will be in May. My ACTHs are between 80-100 so it is most likely a pituitary cause despite my adrenals showing a small adenoma – a red herring! It’s a very odd feeling after waiting so long, knowing something was very wrong, but not knowing what, and thinking i would go on for ever in misery. So to all you guys out there feeling like this, and i know you’re out there(!), don’t give up!! Wish me luck … Posts in Liz’s memory: Terry: Oh no, that is terribly sad. Jenny: Oh no, what happened, did he say? 😦 Beth: omg, I felt sick reading this. I knew of her, but never got to know her. I’m so sorry. 😦 Regina: How tragic! Liz: This is just so sad !! And yet he reaches out to us in his time of sadness, please forward to him my deepest sympathies Nancy: Oh no!!” This makes my physically ill! I’m fighting tears.PLEASE get details so we can try to learn about what happened and prevent any other Cushie from loosing their life.. Hugs and prayers to Liz’s family! MaryO: He didn’t say – I just responded to his email and we’ll see if he has any more to say. I hate when Cushies die 😦 Sandra: Omg liz was my friend! We used to chat on the phone when I was seriously ill too! Omg I cannot belkieve it! Mary cud u pm his email add pls xxx Liz: Me too Mary me too, just brings everything to a scary place for all of us !! Trisha: I am so sorry to hear this. I remember Liz from the boards. Sandra: Have just spoken to ciara lizs daughter who said it was a massive heart attack in the end! Her funeral is on thursday! God bless u my friend xxxxx Lisa: God bless her family..so sad 😦 Kim: So sad Jennyfer: Oh no no more cushies down please send my love Judy: So sad. Does anyone know how old she was, I had never figured that out. Mary: Oh no! I loved our Lizzy girl and have been thinking of her recently. I hadn’t heard from her in awhile. So very sad. Please pass along my deepest condolences. Linda: No! Not Liz! No no no MaryO: She was 45. On the C-H boards, her name was Lizr007 Shauna: News like this breaks my heart over and over again. Mary, please let him know that her Cushie family mourns her loss deeply. Linda: Please do tell Liz’s brother how much she was loved. I can’t believe she is gone…. Judy: Thanks, Mary. I sometimes haven’t converted who they were on the boards to their real life name. I know who she was. That is so young. Adrienne: so sorry, so sad!!! Linda: Please let Liz’s brother know that I adored her. She was one of the first people I met on the Cushings boards many years ago, and she was one of my “rocks”. She was such a supportive, loving person with a great sense of humor. I am heartbroken that she is gone. Stephanie: How tragic!! Thoughts and Prayers for her family and friends. Lisa: Poor Liz. My heart breaks for her family. I remember her struggles Mary: You have my permission to send my condolences. Grace: This is such sad news! Prayers and hugs for Liz’s family. How sad that we lose even one of us to the complications of this disease. Sandra: RIP liz u were such a wonderful person and a dear friend! I’m sure suziQ was waiting for u along with all our other cushies that have past over! God bless u huni I will miss u! Xx Joanne: Im so sorry to hear another precious life taken by this illness, prayers for her and her family.. Anne : Oh not Liz!! She was an awesome person! She had such a great spirit. How horribly awful. Janelle: So sad.. Please let us know what the complications were.. 😦 Alicia: So sad. We are losing way too many people to this disease. Praying for her family. Robin: Oh, this breaks my heart. Please tell Liz’s brother we will miss her terribly. Heather: I’m so sorry. I loved Liz. Her spirit and sense of humor were amazing. I was actually thinking about her the other day as well. Please feel free to convey my condolences to her family. Melissa: As soon as I saw her name — Liz Rafferty — I started to cry. Liz was part of our group there on the Cushing’s- Help message boards. She posted over 2000 times. When you posted her screen name, I could see her avatar in my mind. I am so sad to hear that she is not with us, her family or friends. I am so upset as I wonder why this has to happened to her, to us, to our community. Please send my condolences along to Liz’ brother, and make sure they know that she was caring and supportive of many as well as loved by many. I will miss her. And Mary, please be sure to tell him she was part of our group, too. I bet he would want to make a donation to you and Cushing’s-Help if he knew how extensively she participated in our group. Hugging all of you a little tighter today. — Melissa, TX Beth: Another person with my disease has passed. I didn’t know her personally, but the hurt is still there.. As is the fear. RIP Liz R. Chanelle: Omg!! Ugh my head hurts :(( Sandra: Beth she was a dear friend and such a sweet sweet girl! Even at her worst she was cheerful and lovely ! She has left behind her daughter and her mum god bless em x Christina: 😦 so sad to hear this, RIP to her. Mary: I loved Liz. She was so funny and upbeat and helpful. RIP old friend. Linda: Rest in peace, Liz. You were very loved and and I’m thankful to have met you on my Cushings journey. Susan: Thanks for posting this, MaryO. My sympathies to Liz’s family for their loss. As a member of this community, we will miss you. missaf: My heart goes out to her family. I’m glad she started to feel better for a little while and got to smile more in life. Damn Cushing’s. Sherry: Not another Cushie:( I am so sad to hear this news, Liz was well known on the boards and she will be greatly missed. I just hate this. My deepest sympathies go out to her family. Elizabeth: Deepest sympathy & many prayers. This is so heartbreaking. Dawn: I did not know her, but her passing has affected me. I am sorry that the world has lost her and I’m sad that it was a result of this horrible disease. It always hits close to the heart. My condolences to her family and friends. Ami: I am completely heartbroken. She was a dear. Please include my condolences to her brother. I too would very much like to hear what the cause of death was. Kristin: I’m so upset about this, all I can say is I’m sorry for her family. Leaving a 16 yo without her mommy is so terrible. Somehow the medical community needs to realize how many of our group are not making it needlessly… Prayers for her family. Very nice of her brother to let us know. Melanie: OMG! I feel ill. I loved Liz dearly, she helped me keep my sanity when I first arrived on the biards and gave me such great support – we had some great laughs together and spoke on the phone for hours at a time. I cannot believe another one of us has gone. This damn disease is so bloody unfair. Just read it was a heart attack (Thanks Sandra). – heartbreaking. Gumdrop: So sad to hear this. I pray her family is comforted. Sandra: If I find any more info out I will post Mary: She and I had SIADH in common and the continuing electrolyte issues afterwards, too. I think when I was hospitalized with it, she was the only other person on the boards who’d experienced it at that time. Bernadette: I didn’t know her, but am so saddened by her much-too-early death. My thoughts and prayers are with her family, and with all the rest of you who knew her. Ami: I know she and I exchanged posts on the boards. I wish I remembered more about her… Shelley: I’m sorry to hear about her passing. She and her family and loved ones are in my thoughts and prayers. Mary: oh no! devastating news. so sorry and saddened to hear. 😦 Amy: I am so broken hearted. 😦 Liz was one of the very first people to make friends with me on the cushings website. So sweet and funny, what a wonderful person she was. I have just cried and cried ever since learning of her passing. She really struggled to get her BLA for a long time. May God rest her soul. She truly was “one of a kind” Dacia: Please send my love, my thoughts and prayers to all… AuntSha: Condolences to her family…. My prayers and thoughts are with them. She certainly has been taken too young and much too soon :-(!!! Diane: My beautiful, funny, smart dear friend Liz. You carried me through my journey and held my hand through some of the worst times I can remember. You were my rock, you were my shoulder. Words cannot express how I feel right now. I am heartbroken. I am so sad. The heavens are blessed with another beautiful soul. Love to you my dear friend xx The last time we saw each other was when you had your adrenal operation. I was so thrilled to finally see you in the flesh after spending months posting to each other here and emailing and chatting on the phone. I met Liz at Cromwell Hospital in London where she was recovering from her adrenal operation. I bought her a massive bunch of stocks that filled her hospital room with a glorious heady scent and I bought along a few things to pamper her with. We spent the afternoon chatting non-stop and I remember giving her Mum a big hug. Those memories will stay with me and that is how I remember Liz. A happy smile and a big heart. Rest in peace lovely lady…. Your Cushy friend, always, Diane x Ellen: My deepest condolences to her family. This is such a stark reminder of how cruel this disease is. Monica: Oh Liz. I’ll miss her, she was such a good person and gave support to us all even while fighting her own battle. Melly: So tragic! May God welcome Liz and bless her family with peace and strength during this horrible time. Such a reminder that each day I breathe is a gift. love, melly 3v3: I am new here so I am not familiar with Liz, but I am so sorry to read this. Condolences to her friends and family. I was trying to find her bio info/old posts and it seemed like she was cured or at least recovering? 😦 Judy: Mine too. It’s just so sad. I pray for the family. Beth: Such a tragic loss.. I wish her family and friends strength and peace. 😦 Sandra: Have spoken to aLex woore who was also a cushie friend wiv liz and apparantly she had a bla smtime ago but they cudnt get her sodium n potassium levels right so whether that had anything to do with it I dnt knw but have left my no wiv ciara and her nan so if they call I will let u all knw! X Karen: Please send my condolences also, such sad news . This disease is awful, we are losing so many amazing people to it. Many prayers, Monica: Thinking of Liz tonight. I pray for comfort for her family, especially her 16 year old daughter. Far too many friends lost to this disease over the years. Stanley : I’m sorry to hear that. Melissa: This makes me cry all over again. Mary, could you offer our services in helping to decipher what could have led to Liz’s death? For example, we could guide the family on getting copies of her hospital, doctor, surgical, and lab records. Susan: I am just devastated by this news. Liz was so kind and caring. So tragic to lose someone so young. Rissa: This is so sad. Praying for Liz and her family tonight. Ikho: This news makes me so sad. My condolences to her family. Lorrie: I am so sorry. My prayers go out to her family. 45 years old….such a young woman. God Bless them. Amy: I’m still just in shock. Thinking back I can remember that sweet pic she had of her cat playing with something. I never could figure out what that cat was doing though. LOL This is just surreal to me . . . 😦 Jenny: Please pass on my condolences, her family will be in my prayers. Just so unbelievably sad. 😥 Jo: cant believe it. very sad, god bless our dear friend Liz.taken far too soon. Jenny: The Cushings community has lost yet another dear member. Liz was only 45, please pray for her family and friends. 😦 Lisa: One of our fellow “cushies” (Cushings patient) sadly passed away. Liz was a wonderful 45 yr old mother of a 16 yr old and a friend to us that got so many through this. She was an inspiration and someone that kept her chin up and a smile on her face and ours on our message board. She will be missed. Mary R: We’ve lost another Cushing’s Warrior from complications of this rotten disease. Her name is Liz and leaves behind a 16 yr old daughter. This is the 3rd Cushie in 8 months!!! It doesn’t have to be this way! Just because it’s rare, doesn’t mean that the Dr.s should doubt us and our biochemical/imaging evidence. Please say a prayer for Liz’s daughter and family. PLEASE promise me that if this disease takes me from my family at a young age, that you will bring Cushing’s awareness & education to others on my behalf. Jen: I remember Liz well and I am so sorry to hear that she has passed. My condolences to her family. Diane: It’s been a day since I found out and I am still numb with shock. There are moments in your life when things happen that change your whole outlook on things. Cushings was that something for me. However with all the difficulties of coping with such a terrible disease I managed to find many special friendships and was given support by such a special group of ladies that I will treasure in my heart forever. Liz was one of those special people. We had a giggle, we had a moan about the whole NHS process and testing, we shared some of our most painful moments going through this disease. I will miss you so much Liz. Shine a bright light in heaven lovely lady xxx Mary – you certainly have my permission xx Thank you for creating a place where I had an opportunity to meet someone like Liz xx Amy: I was so very fond of Liz and my heart is still broken in two. 😦 Diane: I’ve just been reading some of Liz’s old posts on the site…more tears are flowing but with a big smile on my face. I forgot just how much of a laugh we had despite the fact we were going through hell…I particularly like the fact that alot of people didn’t understand Liz and my British sense of humour. It just reminded that some great bonds were forged during hours of such need and loneliness, stress and depression, and a fight to get heard and a struggle to get diagnosed. Jo: do you remember when her endo put her in the priory, & she met Ronnie Wood ? Liz Thought she looked better than he did.I cant count how many times K didn’t get his dinner because we were too busy on the phone.Still cant believe it. Sally: I am so sad to read this. Liz, myself and a few others had said we needed to get together in Bermuda (half way) when we were all finally healthy to celebrate our 40th birthdays. I don’t know if any of us managed to hit that milestone healthy, I know I didn’t and I know Liz didn’t. I’m heartbroken, it’s so very sad. betseebee: Such devastating news! Liz’s bio was one of the first I read when I joined the boards. I also distinctly remember her kitty avatar and that I could relate to things in her bio, like being grateful that my daughter was also not an outward bound type, which made it a little easier to be at home so much. My most heartfelt condolences to her beautiful daughter, Ciara, as well as the rest of her family. Liz, may you rest in peace, and dance among the angels. Sherry: My deepest sympaties go out to her family. This disease is awful, Liz was a wonderful person, she and I joined around the same time, I am very sad to hear of this disease taking another precoius life. RIP Liz. Diane: That is so funny Jo, I did not know that. I think Liz would have had no problem looking better than Ronnie!! Have you seen his program on SkyArts right now?!! Sally – I am 40 in June and this has just brought home to me how precious life is and. Not sure I’ll get to Bermuda, maybe Bognor…!! xx Sandra: Sally I remember that convo ! I was one of them then, and yes I made my 40 th prob the healthiest I’m ever going to b now despite battling fibro still! And diane I knw what u mean about the british sense of humour! So not only did we laugh about the joke we cracked up with the fall out of being misunderstood (in a goodway) of course! Lol …..I thought about her sooo much yesterday and poor ciara bless her! Just stil can’t beleve it x Jean: Im soo sorry to hear abt this ;( Really shows how this disease is serious n deadly, if not treated properly or from complications from surgery…my condolences to her family n all who knew her. Dave: Liz, we never got to share that coffee. You were so helpful to me in researching my various problems and I know that there are many many friends who don’t come here any more but we will all miss you. Sincere sympathies to all your loved ones. Sheila: A tragic loss at such a young age. Sad to know that death happens with Cushing’s when we are in the year of 2012. Hopefully more doctors will take an interest in this little known disease of Cushing’s Syndrome. Tanya: 😦 OMG rest in peace Liz. I’ve heard “I wish cancer would get cancer and die.” Well ‘I wish cushing’s would get cushing’s and die.’
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Bettye passed away due to complications of Cushing’s disease. Once she was finally diagnosed, a decision was made against surgery and Bettye was put on the cortisol-lowering medication Korlym. Though she had initially gained weight from Cushing’s disease, as many patients do, she rapidly lost weight and was admitted into hospice care soon after. Read more at https://cushingsbios.com/2017/09/28/in-memory-bettye-jean-douglas-september-28-2016/
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Sherry passed away this afternoon, naturally and peacefully in her sleep. She loved her community and we know how grateful she was to every one of her friends on here for the genuine love and support she’s received over the years. We (her family) are processing, but will share details about her celebration of life when we’ve worked it out. Sherry's bio: I have been very ill for many years now, since 1999 that I know of. But it had always come and gone, until 2004 when it decided to stay. At first it was a mystery as to what was wrong. I was seeing a psychiatrist that felt very strong that what I was dealing with was endocrine related. He mentioned a few things that it could be and one was Cushing’s, so I looked it up on the internet and sure enough I had many of the symptoms of Cushing’s disease, moon face, buffalo hump, weight gain, big round belly, red face, very ruddy complexion, acne, nausea, depression, fatigue, hirsutism, depression, anxiety, hypertension, unusual bruising, and highs and lows of energy. I found this support group on the internet at Cushings-help.com and they helped me find Dr.William Ludlam at OHSU. He told me I had a suddle case of Cushing’s and had a pituitary tumor on the right side displacing the pituitary to the left. Although Dr.Ludlam originally saw tumors on both sides, I had a pituitary tumor that seemed to be cyclic. When it turned on I had major Cortisol energy, when it turned off I got very achy, nausea, and very tired. In March of 2006 I was officially diagnosed after 1 long year of testing, and went on to have my first unsuccessful Transphenoidal pituitary surgery 3/23/2006 with Dr. Johnny Delashaw at OHSU. I had a second unsuccessful pituitary surgery 10/12/06 and finally a BLA 11/7/06. I am now cured of Cushing’s disease 2 1/2 years out from my BLA and I am still very sick, I traded Cushing’s disease for Addison’s disease, and my body does not like it. Cushing’s did a lot more damage than ever thought; I have permanent nerve damage to my lower back, damage to soft tissues throughout my body, Diabetes, High lipids, Fatty liver, I have no usable veins, I have permanent port-a-cath in now so they can access my veins for blood draws and any IV stuff I may need in emergency’s. I had my period for 1 year straight so I had a full hysterectomy 8/20/08. I am permanently panhypopituitary now, no working hormones any more. I am on all replacement hormones, except DDAVP. I ended up with a new doctor that gave me a severe case of steroid induced Cushing’s. I am still dealing with this aftermath; the details are in my timeline. My timeline will update you as to where I am at now. I will try to keep the timeline updated so you know where I am at as far as getting better. Please don’t let this scare you, most people are cured and go on to live lives as best they can, and a lot of people are doing very well. Towards the end of my Cushing’s I went full blown, Dr.Ludlam told me this was a progressive disease and in me this was the case. So if you believe you have Cushing’s, get to a specialist that knows Cushing’s disease, don’t waste time on doctors that do not know the disease, it is so worth it in the end to get to the right doctor. This disease is one of the hardest endocrine diseases to diagnose. Cushings_help.com/ founder MaryO has been a lifesaver for me and still is, I have met people from all over the country, over the years I have made many friends that have, had or are still in the diagnostic phase. I live in a small town of around 10,000 people and I hear all the time, oh I know so and so that had or has a pituitary tumor. What I am finding out is there are a lot of people in this town that have this disease, it is suppose to be rare, one in a million, my next goal is to get my story out and have local people contact me, then start a support group. Maybe get some accurate numbers of actual pituitary/brain tumors and find out why this is happening in this small town. It will be a big adventure but if it saved even one life it will be worth it. I know of 3 definite pituitary Cushing’s cases so far. My Timeline of illness to diagnosis 3rd pregnancy 1994 pre-term labor again, stopped, gestational diabetes, son born 3 weeks early and I got toxemia after my son was born, was told this is very rare. I should have known RARE would be a word I would hear a lot in my future. 1995-Left breast discharge, surgical biopsy done, lump removal of marble size, this should have signaled a full hormonal work-up, but didn’t. No cancer. 1997-1999 Depression and severe anxiety with panic attacks…Diagnosis of Fibromyalgia. Weight 130# 1999- First occurrence of unknown mystery illness. Hypertension, fatigue, flushing, swelling of face, hives, and much more that lasted several months. Sick on and off with mystery illness. Tumor was turning on and off. April 1999-2004-Severe nausea and vomiting, extreme fatigue, weight gain of 50# in about 1 years time, headaches, dizziness, hypertension, tachycardia, muscle and bone pain, malor rash, other rashes, IBS, occasional unexplained low grade fevers, anxiety and depression much worse, increased hirsutism, almost constant mouth sores, memory loss, cognitive difficulties, loss of coordination, syncope, excessive energy spurts, insomnia. **Off work for 3 months April-June due to symptoms…Saw PCP, Gastroenterologist, Rheumatologist and Cardiologist… diagnosis Peptic ulcer/Chronis Gastritis and Chronic pain Syndrome and Tachycardia/Hypertension. Abdominal/Pelvic Cat scan done and fatty liver noted. High Cholesterol and Triglycerides discovered. Nov-2004 My Psychiatrist was the first to mention Cushing’s or a Pheochromocytoma; he felt all my symptoms where due to endocrinology. He did not want to see me again until I was seen at OHSU. I have never seen him again due to insurance change. I really need to thank him. Dec-2004 10# weight gain in 1 week with severe abdominal distention….another Cat scan done, lymph nodes around vena cava where enlarged. Jan-2005 Went to OHSU for diagnosis….First saw an endocrinologist that was not experienced with Cushing’s, she ordered 1 UFC and 2 midnight saliva tests, and told me to test when I felt my worst; Tests where low so she felt my symptoms where not due to my endocrine system. Boy was she wrong. I needed to test when I felt good, or high. Feb-2005 Went to the Pituitary Unit at OHSU and saw Dr.Ludlam, he believed that I had Cushing’s but we needed to prove it. MRI saw adenoma on right side displacing pituitary to the left. He originally thought he saw tumors on both sides, he was right. Lot’s of testing done. Testing did not prove it yet. Dr believes I am Cyclic. It took 1 year for diagnoses from Dr.Ludlam. April-2005 Peripheral vision test done by local optometrist, showed some peripheral loss in left eye. May 2005-Lot’s more Cushing’s testing, PICC line in all month. Major dizziness, passed out and fell this month. Diagnosed with Type 2 Diabetes but cannot treat due to extreme highs and lows, trying to control glucose with diet. I have very high and low Cortisol days. I am very cyclic at this point. June/July 2005-Three TIA like event’s… left sided weakness and numbness. Saw Neurologist that sent me to Neurologist at OHSU. Found three new white matter lesions seen on my brain MRI. Unknown cause. 5 in all now. August 2005-Had to leave my beloved job teaching Medical Assistants due to symptoms. I had one more TIA like event. Sep-2005 Neurologist at OHSU ran several tests and came to the conclusion that if in fact we could prove Cushing’s, all of my symptoms where due to this disease. I stopped all medications by choice. Nov-2005 I went back for extensive testing at OHSU with Dr.Ludlam and sure enough the numbers started proving my case. Very high midnight serum Cortisol’s among other high tests. Jan/Feb 2006-PICC line in and extensive Cushing’s testing done with CSS in Feb. CSS showed left sided gradient strongly. Cortisol numbers have proven my case, finally…. I had a midnight serum Cortisol of 34.1, the Midnight Salivaries, Midnight Serum Cortisol, UFC’s and CSS all positive for Cushing’s disease. March 23, 2006 I finally had Pituitary surgery at OHSU, they found the tumor on the left side bigger than originally though and removed the whole left half of my Pituitary gland. I was in the hospital for 6-days due to complications of Diabetes Insipitus and Adrenal Insuffiency. April-2006 Seen in the ER 3 times. Hospitalized for 4 days again due to complications, Blood cultures showed infection. I am on very high doses of Hydrocortisone and also taking DDAVP for the Diabetes Insipitus. April 2006- I am finally getting better somewhat…..This has been one heck of a roller coaster ride. I am now on Hydrocortisone 40/40/30. I am told we won’t know if I am cured for 3-6 month’s. June 5, 2006- Off Hydrocortisone stimulated my Cortisol to 24 on the ACTH stim test. August, 2006- Not cured, testing again!!! I had that gut feeling when I woke from the first surgery. I just knew… October 12, 2006- Second Pituitary surgery, more tumor on right side, most of my pituitary gland removed. Surgery unsuccessful, still have Cushing’s disease. November 7, 2006- BLA ...soon to be cured of Cushing's. Dec 2006/Jan 2007- Very sick due to another blood infection. Lot’s of adrenal crises due to infections. 3 blood infections to date. November 2008- 2 years out from my BLA and I am still very sick, I traded Cushing’s disease for Addison’s disease, and my body does not like it. Towards the end of my Cushing’s I went full blown, Dr.Ludlam told me this was a progressive disease and in me this was the case. Cushing’s did a lot more damage than ever thought; I have permanent nerve damage to my lower back requiring permanent narcotic pain relief through a pain center, damage to soft tissues throughout my body, diabetes, high lipids, fatty liver (NASH), Osteopenia, I have no usable veins, they are destroyed due to the high Cortisol, I have permanent port-a-cath in now so they can access my veins for blood draws and any IV stuff I may need, I had my period for 1 year straight because of lack of appropriate hormones after my surgeries so I had a full hysterectomy 8/20/08. I am permanently panhypopituitary now, no working pituitary hormones any more at all. I must replace all pituitary hormones, except DDAVP. Please don’t let this scare you, most people are cured and go on to live lives as best they can, and a lot of people are doing very well. June 21, 2009-Since writing in November I sat on the couch in severe AI until around September when I was put with a doctor that has been seeing Cushing’s patients for 38 years, he put me a on a very high dose of Dexamthasone and Florinef and forgot about me, he ended up with cancer and is no longer seeing patients. In the meantime, I got severe steroid induced Cushing’s and have had severe complications from it. I started falling from atrophied muscles and broke both hips, I ended up in a wheelchair, which I am happy to say I am out of now, had to have surgery on my left hip to pin it, it is still not healing, I am having absorption issues with calcium, iron, vitamins, minerals and meds. So I have to do my DEX by injections. We are now trying to find out why I am having absorption issues. I have a new endo at OHSU Dr.V and he is wonderful. He has brought my steroids down to a safe level and did it slow. He really seems to know his stuff as far as after care. I do not think he does the diagnosis process for Cushing’s. I would definitely go back to Dr.Ludlam if I had to go through it again. But I know there are many other great Cushing’s experts out there, this was just my experience. I know I will get better, but it may be a while. I am still at home handicapped, can barely go to the grocery store and I do not drive as I am on a high dose of Morphine. My goal is to get my pain under a 5 and be able to drive myself around. That is a good goal for now. Then on to finding out why my small town has so many tumors and starting a support group. I just need to get to a point where I feel I can be a good advocate for Cushing’s and right now I can’t. But that is the goal. Nov 16, 2009 I am still not well, I have broken my ankle, have no idea how, woke up one morning and it was broken. I am almost down to my 1/2 mg of DEX and am happy about that. had 2 surgeries in Sep and Oct on both elbows for ulnar nerve decompression. The first surgery got infected and a week later I had sepsis, which they think I had a small bowel preferation that healed itself. I was ambulanced up to OHSU and was in AI. It was a very rare bowel bacteria running through my blood stream, I was very sick. I just want to get well, but for some reason I am going through one thing after another. I am praying that 2010 will be my year of healing and I will have a good quaility of life then.That is what I am counting on. UPDATE January 23, 2016 2016: wow has the past few years have been a roller coaster. I don't know dates because I'm having memory issues at 47 years old. I have had 5 port-a-caths. I kept getting sepsis and every time they would take me to surgery and remove my port. Then place another when I was better. I have no veins that work. So I received IV port fluids 2-3x a week. I just recently had sepsis, when I get it I have a 50/50 % chance of survival. They removed my port and did not place another. So no more fluids which was for Pots. I had labs done through my port every 2 weeks. Now everything stopped. I am producing small amounts of cortisol. After a BLA. Intermittently. I am just now starting to feel good for 2 weeks now. I have started the exercise program called T-Tapp. I love it. No jumping or hard moves. 15 min and that's it. I am a grandma of 2 and one due any day. So for now I hope I'm on the road to recovery at least the best I can. HOME | Sitemap | Abbreviations | Adrenal Crisis! | Glossary | Forums | Bios | Add Your Bio | Add Your Doctor | MemberMap | CushieWiki
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During the first few days of September 2007, Lori had surgery to remove her adrenal gland. She experienced extreme difficulty post surgery and never recovered. Read more at https://cushingsbios.com/2015/01/06/in-memory-lori-holt/
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Malia died today, January 4, 2017 at the age of 40. She had been dealing with Cushing's Disease for the past 18 years or so. Read more at https://cushingsbios.com/2017/01/04/in-memory-of-malia-kenney-january-4-2017/
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Judy died on December 15, 2019, after battling lung cancer, Atrial fibrillation, and total body weakness. She was a great warrior for her children. More information at https://cushingsbios.com/2019/12/15/in-memory-judy-kennedy-december-15-2019/
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Jessica Lee Pierson, 35, of Harrisonburg passed away Wednesday, August 29, 2018 from complications of Addison’s disease. Jess was born in Fredericksburg on June 27, 1983, to Janet Pierson and her late husband, Charles Parke Pierson. Jess attended James Monroe High School where she was a stellar athlete and honor scholar. After graduating from James Madison University, she spent two years on the mission field in Peru, sharing her love for the Lord. Residing in Harrisonburg, Jessica excelled at her job as a social worker for Rockingham County and nurtured her clients with compassion, respect, and gentleness. She was an active member of Covenant Presbyterian Church, continually embraced by her family of faith who journeyed with her since her days as a college student. Jess had a beautiful smile, and a sweet and simple demeanor that won the hearts of many, who even now are being inspired by her witness of faith. She was utterly devoted to and dearly loved by her close-knit family. Survivors include her mother, Jan Pierson and husband Frank Graebner; brothers Daniel Pierson (Anne) and Christopher Pierson (Elissa); and sister Emily Moore (Michael). Her signature gift of loving thoughtfulness, especially in her role as “Tia” to her beloved niece and nephews, Mary Claire, Lukas, Nicholas, and Parke, overflowed through her kindheartedness, unselfishness, and generosity, and will never be forgotten. Interment will be held at 10 a.m. on Saturday, September 1 at Oak Hill Cemetery. A service to celebrate her life will follow at 11 a.m. at Fredericksburg Baptist Church. In lieu of flowers, memorials may be made to Missions Ministry of Covenant Presbyterian Church, 32 Southgate Court, Harrisonburg, VA 22801 or Fredericksburg Baptist Church. From https://www.covenantfuneralservice.com/obituary?id=319105
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A young woman struggling with ill health after developing a tumour died from an overdose after “illicit insulin” was brought into the Norfolk and Norwich University Hospital last year, an inquest heard. Jenni Moore passed away at the intensive therapy unit on January 25, more than two weeks after sustaining brain damage while an inpatient at the hospital. The 26-year-old from Halesworth had been admitted in December with complications from two unsuccessful operations to remove a tumour of the pituitary gland. A Type 2 diabetic since 2002, Miss Moore suffered from emotionally unstable personality disorder and an abusive relationship, before a diagnosis of Cushing’s disease as a result of the tumour. Consultant physician at NNUH Dr Franscesca Swords said Miss Moore had been exhibiting “alarming symptoms”. “Cushing’s can cause Type 2 diabetes and needs much higher levels of insulin for it to work,” she told Norfolk Coroner’s Court. “She was having incredibly low sugars, which is consistent with too much insulin. We had been reducing her dose steadily. “We were giving her a fraction of the insulin she had been taking but her blood sugar was still low. Eventually the realisation came to ward staff there was something else at play here.” Staff then began to discover insulin pens hidden in her room. During an investigation Norfolk Police interviewed Miss Moore’s partner Derek Soanes, who admitted he had brought her insulin pens at her request. No further action was taken. Sarah Kennard, a lead health officer with Norfolk and Suffolk NHS Foundation Trust, said in a statement that during a risk assessment in March 2014 Miss Moore said she “thought she was insulin resistant” as a result of her Cushing’s. Assistant coroner for Norfolk Nicholas Holroyd recorded a narrative verdict. “Jenni suffered significant and unhappy health conditions for a number of years,” he said. “Cushing’s exacerbates the diabetic condition to make the patient yet more vulnerable to sugar or hypoglycemia so higher doses of insulin are needed to correct the situation, which made her resistant in a sense. “There has been evidence insulin was being brought to her in the hospital she should not have had. I do not believe she intended to take her own life. Nothing had occurred to drive her to an extreme act.” After the inquest Miss Moore’s brother Joe said: “I loved my sister and so did the rest of my family, and we miss her every day.” From http://www.edp24.co.uk/news/diabetic_died_after_overdose_from_illicit_insulin_brought_into_norfolk_and_norwich_university_hospital_1_4614300
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January 5, 2005 Jill wrote: 'In December 2004 my dad who had addison's for over 30 years had a triple bypass surgery 6 days before Christmas. The surgery was an amazine success and it was predicted he would be home before Christmas. Day 2 following surgery the hospital neglected to give him his steriods for his Addison's for 22 hours, which they were completely aware that he had...' Read more at https://cushingsbios.com/2016/04/29/in-memory-jills-father-january-5-2005/
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Kassey passed away on June 30, 2016. Her sister said she died in her sleep. She was in the hospital due to a crisis on June 21st. Kassey was only 20 years old. Read more at https://cushingsbios.com/2016/07/07/in-memory-of-kassey-whiterock-june-30-2016/
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Kayln was only 41 when she died on June 28, 2017. She had recently had pituitary surgery. Read more at https://cushingsbios.com/2017/06/28/in-memory-kayln-allen-june-28-2017/
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Kate (Fairley on the Cushing’s Help message boards) was only 46 when she died on June 23, 2014. Read more at https://cushingsbios.com/2015/06/23/1623/
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Diana Lynn Alexander Crosley, age 58, of Sidney, passed away peacefully on Wednesday, June 18, 2014, at 10:10 p.m. at her residence surrounded by her loving family. Read more at https://cushingsbios.com/2015/06/18/in-memory-diana-crosley-2/
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Sarah had recently had surgery to remove a tumor from her pituitary gland in the hopes of treating her Cushing’s Disease. She died on June 13, 2011 after a brief illness at the age of 28. Read more at https://cushingsbios.com/2013/09/14/sarah-fraik/
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Thomas “Tommy” F. Zachman, of Windsor, formerly of Toledo, Ohio, died suddenly and unexpectedly at University Hospital in Denver on June 3, 2010, complications of Cushing’s Syndrome. Read more at https://cushingsbios.com/2015/06/03/in-memory-thomas-f-zachman-1950-2010-2/
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Sadly, we lost another Cushing’s patient on Friday, May 9, 2014. Melinda was a member of the Cushing’s Help message boards since Jun 24, 2007. She was only 25 and left behind a young son and many loving family members. Read more at https://cushingsbios.com/2015/05/09/in-memory-of-melinda-smith-1988-2014/
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He died of a presumed heart attack. September 19, 2015 he said 'I was diagnosed hypertensive way back when I was 20. The condition remained for years, and became more acute with my cushings pit tumor. I still have high blood pressure, partially teated with three meds. I'll have to consult my doc and see if this may also be an issue.' More information at https://cushingsbios.com/2016/05/08/in-memory-gregory-j-bart-jr-may-7-2016/
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May 2, 2002 From the Message Boards: ” I loved her, she was a great friend. She died of adrenal cortical carcinoma.” Read more at https://cushingsbios.com/2015/05/02/in-memory-patti/
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In Memory: Kathryn McBride ‘Bridie’ Miller Murdered May 1, 2007 'My name is Caroline and I dont post often but have met a few of you guys and read the board regularly, it has definitely been a godsend to cushies everywhere. The reason I am writing tonight is I have just received devastating information about a dear friend of mine, and a woman some of you may have met during testing. Her name is Kathryn Miller and she is a patient of Dr. Ludlam, that is how she and I met. She was diagnosed with cushings late last fall and had surgery in December and was doing pretty well afterwards...' Read more at https://cushingsbios.com/2015/05/01/in-memory-kathryn-mcbride-bridie-miller/
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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: Natalie's bio... http://www.cushings-help.com/natalies_story.htm Some recent past posts. February 10, 2008 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. Thanks! Natalie March 18, 2008 surgery update Hey everyone! 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 Tributes and Memories on the message boards... 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] http://www.wrightfuneralhome.org/index.cfm Natalie Grissom Fay (June 11, 1965 - April 21, 2008) Guest Book | Sign Guest Book 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.
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Shianne was a Cushing's Survivor who had just published a book, Be Your Own Doctor After 17 years as a personal trainer, I ran into health problems of my own, eventually having a name put to it…“Cushing’s Syndrome,” a rare adrenal disease. Tumors were growing on my adrenal glands over-producing Cortisol, your stress hormone. With 24/7 false fight-or-flight stress signals, the body goes haywire, producing horrific side effects such as weight gain around the midsection and back of neck, diabetes and blood sugar deregulation, inflammation, muscle deterioration, frail bones, hair loss, poor immunity, infertility, moonface, buffalo hump, extreme fatigue, brain fog, confusion, severe anxiety/depression and chemical imbalances. Being constantly diagnosed as “healthy” caused me to be told, when I was finally diagnosed correctly, that I had maybe five years to live. Misdiagnosis can be a killer.… It is now my personal mission and obligation to help those suffering from any chronic illness that steals your joy, and bring awareness to Endocrine Disorders. From my journey through Cushing’s to Addison’s to recovery—from triathlete to barely being able to dress myself and finally to recovering into a stronger person I never knew I was. Her obituary can be read here. https://youtu.be/5qXYrm6OqYk Shianne F. Lombard-Treman May 03, 1977 - March 28, 2018
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It may not have been adrenal crisis, but it may have, as Renea, after her BLA, didn't need replacement. She hadn't taken hydro for some year(s), and yet her cortisol was always '0'. The doctors would just scratch their heads. Renea was 31. Read more at https://cushingsbios.com/2015/03/30/in-memory-alena-renea-weeks-greenhill/
