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In Memory: Marie Richardson, March 2009

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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.”

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In Memory: Sue Koziol (SuziQ), March 12, 2006

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When I opened up my phone this morning, I saw the reminder that this is the anniversary of Sue’s passing. She was such a good friend to so many here and so many Cushies worldwide.  It’s been another year. Not a day goes by that I don’t miss Sue.

When I see a catalog with flamingo items, I’m reminded of Sue.

We took the picture below during a trip to Barbados in 2004.  At the Graeme Hall Nature Sanctuary.

sue-flamingos

 

 

We got matching hats.  Since she died, I’ve never worn mine again but it is next to my front door, ready to go…

 

Sue2004

 

Sue loved Barbados.  I’ve renamed the back patio “Sue’s Garden”.  I often “check-in” there on FourSquare and I’m thinking that other folks in the area wonder who in the heck Sue is and why she has a garden in Barbados.  LOL

sues-garden2 sues-garden

 

At Sue’s last Cushie Weekend in Rockford, IL – 2006

rockford

 

We planned to go back to Barbados in August 2006 but Sue couldn’t hold on that long. 🙁

When she was sick for the last time, I got her her very own SuperSue bear with her name embroidered on the back of the cape.  She loved it but it wasn’t enough…

 

SuperSue

 

I’m sure that many of the new folks here never got to meet her, but you would go well to go back and read some of her old posts. She was always so encouraging to all of us.

RIP, Sue.  We miss you!

From http://www.cushings-help.com/memoriam_koziol.htm

Sue Ann Koziol (SuziQ)

Sue Ann Koziol (SuziQ)

Sue was born in Michigan on August 08, 1946 and passed away on March 12, 2006 at the age of 59.

She was a very special friend to Cushies world-wide. We will remember her always.

There was an online memorial for Sue during the Cushing’s Awareness Day Medical Forum in Oklahoma, April 5-8, 2006. For more information, please visit this topic on the message boards

 

To light a candle or read/post a tribute for Sue, please go here: http://suziq.memory-of.com

 

To read more about Sue’s journey, please click here: http://cushings.invisionzone.com/index.php?showtopic=14655

 

maryobeachbuddies

In Memory: Liz Raftery, March 2012

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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.

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.’

In Memory: Jenni Moore ~ January 25, 2016

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in-memory

 

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

In Memory: Lori Holt ~ January 6, 2008

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in-memory

 

Sunday, January 6, 2008

Lori’s sister-in-law wrote: “I am Kimberly, sister-in-law to Lori from Monmouth IL.

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.

I wish to inform all who might have known her on this board that she passed away on Sunday, January 6, 2008.

She was hopeful that the surgery would help her,
and loved and appreciated her many friends and others who supported her.

Thank you to everyone here who knew her and offered encouragement and hope.”


Lori’s sister-in-law wrote again : “I apologize for the time that has passed since you wrote the last e-mail. I have sent Lori’s obituary to you in an e-mail from a newspaper. (http://www.thehawkeye.com/Story/obit_Holt_010808)

There is one error in the obituary. She obtained her graduate degree from Northeast Missouri State Univ., not Southwest as stated.

Lori was truly remarkable, and especially so in her fight with Cushing’s Syndrome (adrenal).

Lori lived in a small town in west-central Illinois, not far from the Mississippi River. As you know (because I learned it on your website!), most doctors never see a case of Cushing’s. At some point during the summer of 2007, Lori diagnosed herself by doing research online. This is evident by some written things she left behind in her home, and in letters she wrote to doctors as she went about putting together a medical team.

She worked to find doctors who would perform the specific diagnostic tests to find the Cushing’s. She clearly knew by that point what she was looking for. Remarkably, she found several doctors who worked with her on this. Sadly, it was too late. In the last few years, she’d begun to gain weight, which perplexed her a great deal. She would occasionally call me or write e-mails, and in addition to telling about things going on with her life and work, she would mention her frustration at not being able to quite sort out just what was causing her health problems.

Lori was a deeply kind and caring person. She was a gentle soul, and loved her preschool children so very much. She never missed sending my two sons a card not only for birthdays but on every single holiday you can imagine — Halloween, Thanksgiving, Valentine’s Day, St. Patrick’s Day. She was a single woman and worked with great determination to be self-sufficient.

She really loved her brothers, and was so glad as they married so she could have some “sisters” around. Once we moved from the Chicago area to northern Michigan in 1998, we didn’t see her often, and I regret that so much.

Lori fought her disease intelligently and valiantly. She suffered a lot while in the hospital between Labor Day weekend and when she died on Sunday, 1/5/08. At different points, she suffered from MRSA, shingles, and extreme breathing distress. I am quite certain that her body was just too spent by the disease to recover itself.

I thank you and all who might have been in contact with Lori during the very brief time she may have spent on your message board. I wish you all the very best in your continued struggle with disease and your on-going work to educate the public.

–Kim Jones


From http://www.thehawkeye.com/Story/obit_Holt_010808

Lori Holt

Lori A. Holt, 47, of Monmouth, Ill., died at 1:52 p.m. Jan. 6, 2008, at OSF St.Francis Medical Center in Peoria, Ill.

Born Oct. 7, 1960, in Galesburg, Ill., she was the daughter of Patrick M. and Patricia Noonan Holt.

Ms. Holt was a teacher at the Lutheran Preschool and Daycare Center in Monmouth for 11 years. She graduated from Galesburg High School and then graduated from Monmouth College with a bachelor’s degree. She also lettered all four years in volleyball, basketball and softball. She earned two master’s degrees in physical education and health from Western Illinois University and Southwest Missouri State. Ms. Holt played for the State of Illinois softball team at the national level for two years. She was head coach of women’s volleyball, basketball and softball at Spoon River College and was head coach of softball and basketball at Illinois College in Jacksonville, Ill. She was coach and athletic director at Costa Catholic High School in Galesburg for a number of years. Ms. Holt was a fan of the Green Bay Packers, the Boston Celtics and the St. Louis Cardinals. She was a member of Immaculate Conception Church in Monmouth.

Survivors include her parents of Knoxville, Ill.; five brothers, Frank Felz of Fort Worth, Texas, Michael Felz of Evanston, Ill., Paul Felz of Denver, Colo., Patrick Felz of Buffalo Grove, Ill., and Martin Holt of Grant Ranch, Colo.; nieces and nephews.

She was preceded in death by her grandparents.

No visitation is planned. The body has been cremated. Turnbull Funeral Home in Monmouth is in charge of arrangements.

A memorial mass will be at 10 a.m. Thursday at Immaculate Conception Church in Monmouth.

A memorial fund is being established for Lutheran Preschool and Daycare Center in Monmouth.

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In Memory: Jill’s Father ~ January 5, 2005

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in-memory

Jill’s Father

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. 7 mistakes by hospital staff lead my father into shock and multiple organ failure. The doctor’s did think he would make it through the day. He survived for another 16 days until he contracted a hospital bacteria which crossed over into his brain and caused massive brain damage. Jan. 5, 2005 we took him off life support. I have been search the internet to learn more about Addison’s and why this happened.

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In Memory: Malia Kenney ~ January 4, 2017

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in-memoryMalia died January 4, 2017 at the age of 40.

Her sister wrote on Facebook:

My beautiful sister Malia Kenney passed away this morning. She has been dealing with Cushings Disease for the past 18 yrs or so.

She has been in the hospital and physical rehab since November with 2 different types on Pneumonia’s. Her poor heart just couldn’t take it anymore.

She was such a beautiful person inside and out and I will miss her so much.

I LOVE YOU BIA
Malia has been a member of the Cushing’s Help boards since August 3, 2004.  Her profile is here:  Cushing’s Help boards
malia-kenney

In Memory of Judy Kennedy – December 15, 2019

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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.

 

 

From 2008: Siblings Deal With Rare Cushing’s Diagnoses

By KALEY LYON

klyon@dailynews.net

COLBY — As a junior in high school, Justin Kennedy began getting sick and missing school on a regular basis.

He was fatigued, unable to sleep at night and gaining weight rapidly. He also was unable to focus on his school work and began experiencing memory loss.

After several doctor’s appointments, Justin was diagnosed with Cushing’s disease, a rare disorder caused by excessive cortisol levels resulting from a tumor on the pituitary gland.

At the time of Justin’s diagnosis, his younger sister, Jessica, also was showing symptoms of the endocrine disorder. Her diagnosis came at the same time.

“I think they both have had symptoms since they were little,” said their mother, Judy Kennedy.

Other symptoms include a round facial shape, flushed cheeks, excessive hair growth, skin discoloration and depression, Judy Kennedy said.

Weight fluctuation is uncontrollable. Weight is gained at a high rate, despite diet, exercise and other efforts, Jessica Kennedy said.

“The weight has a mind of its own,” she said.

The diagnosis, following many doctor’s appointments and tests, came last November. Today, Justin, 19, keeps busy with a job at McDonald’s, and Jessica, 15, is a freshman in high school taking online classes.

One of the most bothersome symptoms of the disease is the toll it takes on the sleeping schedule. Her children often are unable to sleep until early morning, Judy Kennedy said.

“When there was a chance for her to do online high school, it was such a relief,” she said. “We don’t have to worry about what time she starts her school work.”

Appetite fluctuation is another side effect. The two go through phases where they have healthy appetites, then hardly eat at all, she said.

That’s because the disease puts their bodies through various cycles, which can last for less than a day or for months at a time, Judy Kennedy said.

It’s predicted that about 15 people in a million are diagnosed with the disorder, which can make it difficult to find support and get answers, she said.

The family, however, discovered an online support group and has enjoyed the opportunity to communicate with other families in similar situations.

“I honestly do not know where our family would be if I wouldn’t have found that support group,” Judy Kennedy said. “Even though it’s still awful, it’s better to know that other people have the same symptoms.

“There are people on the streets who have this and have no idea,” she said. “And their doctors don’t either.”

Both teenagers also are preparing for surgery. In mid-May, the family will travel to Houston, where the siblings will have the tumors removed from their pituitary glands. This is expected to resolve the hormonal imbalances, Judy Kennedy said.

“I’m looking forward to that day,” she said.

This Topic on the Message Boards


JESS AND JUDY ARE MEMBERS OF THE CUSHING’S HELP AND SUPPORT MESSAGE BOARDS.

Jess and Judy answered questions in an online Voice Chat January 17, 2008. Archives are available.

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In Memory: Millie Niss ~ November 29, 2009

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Millie is the first Cushing’s patient that I know of to have died from complications from Swine Flu.  She was only 36 – how sad.

Millie Niss (1973-2009)

We were saddened this past week to learn of the passing of Millie Niss, the Buffalo-area-based poet, writer, digital artist and web-based installation designer, who died Nov. 29 of complications of Bechet’s Disease, which she had battled for nearly two decades, and the H1N1 virus, which she had contracted four weeks earlier.

She was just 36 years old.

There are only a few people one ever meets in life for whom the description “savant” might apply, but Millie was one of them. An award-winning, Columbia University-trained mathematician, she published papers and original proofs in professional journals while still an undergraduate, but saw her very promising academic career foreshortened by the early onset of a rare vascular autoimmune disorder — later diagnosed as Behcet’s Disease — that would eventually take her life.

With an indomitable intelligence and a fiercely competitive spirit, she approached her progressively worsening condition with courage, wit and a highly focused agenda of things she wanted to  accomplish.  Over the past decade and a half of her life, she turned to writing, digital art forms and a variety of web-based media forms to express the full gamut of ideas and emotions that still roiled inside her. Much of her work can be found at Sporkworld.org — the web site she created in 2000 — and her Sporkworld microblog — since 2002, a collaboration with her mother, the poet and author Martha Deed.

While her health prevented her from extensive travel, or even attending many events in the city in recent years, she remained a vital presence at many literary events in the Northtowns, including at the Screening Room in Amherst, Just Buffalo’s Literary Cafe at the Center for Inquiry, and Carnegie Art Center in North Tonawanda, where she lived.

Her last project and public event was at the University at Buffalo’s & Now Conference on Post-Modern literature and digital experimentation in mid-October, where she was among the writers and web artists chosen to present their new work at Hallwalls Cinema by a juried panel. Traveling with an oxygen tank and in a wheelchair, she was able to deliver her complete program, which was well-received by her peers.

Shortly after the conference, Millie developed a confirmed case of the H1N1 virus. She spent 29 days in the ICU of Millard Suburban Hospital before dying of complications of the flu, compounded by Behcet’s Disease and Cushings Disease.

Like many of the poets we’ve published in The Buffalo News with some regularity over the years, I knew Millie better from her work than from the handful of occasions we met at readings or other literary events over the years, but I can unequivocally say that her work had rhetorical propulsiveness: it was urgent, driven, sometimes whimsical, sometimes indignant, but it always seemed to jump up off the page at you.  Our conversations were always cordial, but I sensed that she wasn’t a woman who suffered fools gladly.

She bristled with the kind intellectual energy that you typically find in polymaths, and if that intelligence occasionally expressed itself with more than a hint of impatience, you got the sense that deep down she knew that her time to leave her mark on this world was limited. Her work was edgy, provocative, probing, ironical and never boring.

Some of her strongest work was too personal in tone for us to use in what is essentially the public literary space of a newspaper poetry forum, but I admired it nonetheless. We published at least four of Millie’s poems over the years on The Buffalo News Poetry Page, but much of her recent work was designed specifically for the web.

The fact that she achieved as much as she did during her brief lifetime lived under such difficult physical constraints is a testament to her boundless spirit, and a reason we can all celebrate her life.

–R.D. Pohl

From http://blogs.buffalonews.com/artsbeat/2009/12/millie-niss-19732009.html

In Memory: Hermina Dala ~ November 29, 2002

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Hermina had Cushing’s Disease. She passed away November 29, 2002.

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