We reported earlier this week about Brad Ferguson of Kamloops, who died from complications from a rare disorder, and the reaction we received from readers near and far suggest those complications are common among sufferers.
Ferguson, 29, was diagnosed two years ago with Cyclic Vomiting Syndrome, which affects roughly two per cent of the population. In Ferguson’s case, he would go through bouts of repeated vomiting, sometimes for hours or days on end.
For most people, it can be manageable and should not result in death. But Ferguson’s case has moved — and frightened — many people who understand the frustrations that may have contributed to his death.
When symptoms get bad enough, patients like Ferguson can get so severely dehydrated the only way to replenish fluids is to attend Emergency Rooms for intravenous hydration, but he grew frustrated with spending as many as eight hours waiting in excruciating pain and repeatedly vomiting for an IV.
Many readers suggest that’s because they are being confused with drug users and drug seekers and they are held at the back of the line.
On Aug. 15, Ferguson tried to sleep it off instead of going to the emergency room, couldn’t rehydrate himself and died.
Here’s a selection of stories relayed to us from readers, many close by and others from across the world.
“The hospital often just sees us as drug seekers, addicts of a sort. I can see why many avoid it. I sure do. I’ll try not to be so stubborn.” – Tan RM
“Hearing this disturbs me greatly. My niece and I are both diagnosed with CVS. I cannot speak for her, but up until I was diagnosed I was treated so very poorly at the (Royal Inland Hospital), there was one time they sent me home in the middle of my attack (in the conscious coma part). I managed to walk to my car on Nicola Street. (I had just starting vomiting when I arrived at hospital from work) then drove to my mother’s (lower Sahali) before I collapsed again.
I am grateful that my CVS only happens every six weeks for averaging 14 hours but as long as two days. Pharmaceuticals were my primary triggers, with stress and chemical toxins being the accumulative triggers. I was first afflicted in 2000. I treat myself unless it is really prolonged. I do not like going to the hospital. They must have a flag on me as a drug seeker or something. I also haven’t had a family doctor since Dr. Junkin retired. I now have protocols that I use and my last episode in August was only 12 hours.” – Marian Zeller
“My son also has this horrible disease. If we can get him to go to the hospital, he is treated as a drug seeker and often left to wait hours for care. You can tell them you only need fluids and it doesn’t help. I guess they think he has found a way to get high on normal saline. He has lost nearly all his teeth because of throwing up for days on end (stomach acid eats teeth) so there is no convincing the ER docs and nurses any different. Funny thing is, I am a nurse and even I can’t help. I pray daily for understanding and help for everyone with CVS and for their families.” – Linda Mullinix
“Thank you for being the voice that not many of us have. I have gastroparesis along with violent vomiting. I’m terrified to go to the hospital because of how they treat you. A few months ago I went into the hospital because my doctor told me I needed to be rehydrated. When I arrived the staff treated me horribly again and would not give me fluids. They gave me my meds orally. Have you ever drank lidocaine and try vomiting at the same time? Well, that’s what they did to me. I almost passed out from choking on my vomit because my throat was numb and I couldn’t get it out. I’m tired of being treated like a drug seeker especially when I specifically ask for no narcotics.” – Jeni Long
“I am so sorry for your loss. My son has had CVS for 20 years now, diagnosed in 2002. Awareness is key in this awful disease. Very sad when the patient knows more about it than most doctors and nurses. My son also refuses to go to the hospital anymore after being admitted over 500 times. Test after test, same ones repeated time and time again. We have waited over 12 hours sometimes just for a doctor to see him. These clinics would certainly help. I am sure the patient would be more willing to go to the hospital if they knew they were going to be treated properly. My son at the moment is averaging two episodes per month lasting five to 10 days.” – Carol Lee
“We live in the Netherlands and my son of eight has been refused in the ER so far. Not ill enough, they say, and so on. A film by a doctor would be so helpful.” – Renate To You
“My heart breaks. I have CVS, and almost always have to go to the ER. I have on numerous times been left in the waiting areas for upwards of eight hrs, covered in vomit and urine, unaware and barely conscious, and have on numerous ER visits been told to be quiet by staff because I was “vomiting too loud”. I also take very hot showers for sometimes hours. It is painful, degrading, and I personally am so violently ill, I can’t even speak my name when it gets bad. CVS is awful, and I am so sorry you lost your son to this. I am 44, and was diagnosed 11 years ago, after years of testing, being called a liar, being forced to see a therapist to make sure it wasn’t ‘all in my head’ and treated like dirt by doctors. My diagnosis came when I had spent ten days in the hospital, vomiting continuously and almost died. I wouldn’t wish this on anyone.”– Shari R Miller
“My heart goes out to you and your family for this devastating loss. This is happening too much in our CVS family, too many people losing their lives over being ignored or caused to wait hours and hours for treatment. I’m 39 and have had CVS diagnosis since age 19 but had episodes since age 10. It’s been a hard road for me just like most CVS sufferers. I hope there’s a cure one day but honestly I doubt I’ll see that in my life as there’s just not enough known about it out there. Some doctors choose not to know more about it and that’s a shame.” – Courtney Newman
“I always hated getting sick in front of people in the ER. I also hated waiting hours on end then being pushed down the line because my sickness wasn’t ‘serious’ enough. I think this hydration station should be in all emergency rooms around the country. I am so sorry for your loss and thank you for sharing.” – Maryanne Weaver
“I have CVS as well, for about 20 years now. It took 13 years to finally get diagnosed by a second stomach specialist I saw. I understand how frustrating it is when I have an episode and sitting in the emergency room for hours when you’re so sick and in so much pain. I don’t even go sometimes because of that. A few months ago I had back-to-back episodes and went to the hospital on the second episode and surprisingly I got in right away and they gave me fluids and something for the pain. A lot of doctors still don’t know much about CVS and don’t take it very seriously. It’s a very hard thing to go through and it is terrifying not knowing when your next episode is going to be. I believe there should be a hydration station at Royal Inland Hospital for people needing that hydration. I’m so sorry for the Ferguson family and my heart goes out to you.” – Lindsay Laffrenere
“My mother and myself are both diagnosed with this condition. When we were diagnosed my mother was the 810th and I was the 811th person in the history of the world to be diagnosed with cyclic vomitting syndrome. It is a very scary reality that I’ve been faced with more than once and the complications can be fatal. There needs to be more research, this is a very real illness that affects a small ‘diagnosed’ and a larger undiagnosed part of the population. I’ve had uncecessary surgeries to remove parts of me that they thought were making me sick, not actually knowing what the cause is. I’ve spent endless nights in the hospital, almost losing my life four times due to complications of an episode. I’ve spent 28 days straight with no break suffering from an episode with no help or even knowledge of what to do to help myself or be given help by professionals. I’ve seen my mother suffer for years and years with the same illness and complications and it’s a scary truth. There is no cure, and as of yet no relief. I am lucky enough to be in “remission,” as I like to call it, for the last few years. But I live every day with this looming cloud, terrified of an episode coming on. We need help and we need more research done to help us, maybe not find a cure, but at least some relief.” – Danielle Forseth
Story taken from https://infotel.ca/newsitem/readers-share-frustrations-fears-after-kamloops-man-died-of-complications-from-rare-disease/it55892#.W6XOKVMOc5p.facebook