Kirsty's Story
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- เผยแพร่เมื่อ 9 พ.ย. 2015
- This is Kirsty Westwood's story, detailing her long path to reaching a correct diagnosis.
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The most insulting part is how the doctors insinuate it’s “ all in your head” simply because they couldn’t be bothered to investigate beyond normal illnesses. So you already feel like crap and then you’re made to feel crazy. Mine was so large I lost my kidney as well. And they nicked my spleen during surgery so out it came too.
Thank you for sharing. My sister was recently diagnosed w/ Pheo. I am doing all the research I can so we can make the most educated medical decisions for her. She has the classic triad of symptoms. Sweating profusely, episodic hypertension and headaches, skin rashes and itching, anxiety and depression, etc… Her tumor measures 3.8cm x 3.3cm according to MRI. Her lab work was off the charts, her metanephrine and normetanephrine were extremely high. Her o2 is chronically low. She cannot breathe. I just wanted to say thank you for sharing your story. Please pray for my family.
@Pheochromocytoma Story, I'm so sorry to hear about your sister and what you all are going through. My daughter and I are going through the classic triad intermittently. I have night sweats as well and we both suffer from mood swings, anxiety, and depression. Our lab work came back normal and our doctor thinks it's all in our head or just depression in general. I keep telling her how is it that both of us have the same symptoms, just at different times smh. I feel bad I may have passed it along to my daughter since it is hereditary:(. We're getting the proper tests and will see an Endocrinologist for a proper diagnosis, I hope. Thank you for sharing your story. The more we raise awareness, the more lives can be saved. Wishing you, your sister, and your family great health and blessings!
Praying ❤️
I have trauma from this too and understand now what people go through. Having someone with you that you love is extremely comforting and is very necessary. Hope you continue to thrive!
Thank you for sharing. I’m awaiting imaging for a suspected pheo, and although your story scares the heck out of me, I’m comforted by hearing your experience.
I have MEN 2A
And having once again, pheo symptoms & just had images, now await the results...
I have many family members with pheo surgery...
It's a awful feeling... Horrific.
Glad your recovered, thank For your sharing....
I am just getting past two breast cancer surgeries so I understand the ” oh my gosh, WHAT JUST HAPPENED to me?!” But we are alive. It’s not a small miracle you are okay; your case required a VERY high level of skill by your surgical team, and your incident afterwards required some quick decisions and actions too! I’m currently on two types of antibiotics for a breast infection.😐... but so far we’re living to tell the story. Thank God. 🥰...like my mom, I may have
MEN 2A an endocrine syndrome that affects the parathyroid, thyroid and adrenal (check your PTH hormone level)....but I’m saving it for another day. So your video helps people. Thank you for sharing, because right now I’m scared of my own shadow! 👀
Thanks for sharing, I am a pheo survivor twice now and your experience (& scar!) sounds very similar to mine! It's been 6 years since my last one and it does get easier with time.
Thanks for sharing your story. I have an adrenal tumor that requires further testing to know what it is. Your video is very informative!
My symptoms were very similar to yours, but maybe not as frequent and a bit less severe. I have a 6.5 cm tumor in the right adrenal. It was also sporadic and they happened to find it while doing a CT scan to see if I had a pancreatic cyst, which it turned out I didn't. Good catch! Your video has been very helpful Thanks.
As I wait to see a specialist to schedule a laparoscopic surgery, I anticipate less post-operative complications as a result.
Hello Ive had a pheo removed 12 years ago. I didn't have as many symptoms I was lucky. I can relate to your experience not a nice surgery 13 hours in total. Mine located on a central artery. But now having more symptom s. Mri confirmed they have spotted something but trying to stay positive. This is a genetic disease so staying strong for my children as they could have inherited the gene. God bless to everyone who may have this disease. More awareness the better. Stay strong 💪💪
Let us know if we can assist you in any way. We wish you the best in your journey.
I had a cancerous tumor on my adrenal gland and have done well after my surgery in 2012.I respect all of you who have gone through this.Hope u r doing well.
Judy Hyland thank you for posting. We hope you are being regularly followed, and continue to do well! We’d love to have a video or written story from you, if you’d like to share.
I am.TY
Heloo Jidy , I hope you are stil l ok? my husband is operatad 2 weeks ago from this...Im doing google-ing for pheo but very poir information especialy because is very rare.Did you nave radio or some kind of chemoterapy...his pheo was capsuled ..clear aroud ..ct scen exelent free of metastazis..Thanks
I am recently diagnosed through a hypertensive crisis with an adrenaline level of around 300000 and two cardiac arrests. Now taking meds and trying to recover before I go into surgery. Have already had central lines and been in ICU so am terrified to be in that position again with surgery but keen to get this large pheo out. It haemorrhaged as well and we are trying to see if the bleed reduces. From what they say so far, they believe it to be around 10 cm and only one large tumor. I am also in NZ.
Thanks for sharing, Kirsty. Mine was removed in 2014, 13cm, surgery for 8 hours. Not fun, but you're right, the scar is nothing for what problems the pheo brought about. Good luck to you.
Malignat pheo or beningnal peo? are you ok now? I hope yes you are..😊
@@tanjatrajkovska496... benign pheo. Yes, still good 7 years later. Knock on wood, right?
Thank you for sharing.
very well explained, thanks!
Thank you for sharing your story.
Thank you for sharing your story. I am going through the same journey. My pheo is significantly smaller - I have a lymphangioma as well on my other kidney. I can’t wait to get these out of my body.
Pheochromocytoma's are scary, january 2019 i had adrenalectomy on the right hand side, i experienced similar issues pre surgery, my blood pressure got up to 280/ i had to have 30 pills a day to lower blood pressure enough to operate, i was told pretty much the same pre and post op. I was rold no genetic markers present, but was just random, no catalyst, you not alone we do exist, somewhat near and far between the low occurence rate spreds us out across the world, i've met one other person in real life that had one, i don't even know anyone who knows anyone that heard of a guy that has/had one, hopefully more research in that area happens, stay strong, keep up your test, ask as many questions that come to mind it's the best way to find out info, stay positive and best wishes for the future, hope you never have to experience that again, some do, most don't, all pheo survivers are lucky to be alive, everytime a story of one is told it is full of unpleasant, extreme, unnatural sounding occurrences, hope you future brings you what you want and you stay happy and healthy for many years to come.
What's your blood type. So curious. I am A-. Just learning what my doctor believes I have.
@@dadmichaelp i'm not sure what blood type i am but am unsure to why that could be relevant, can i ask why you asked that question, i will find out for you if it will help, let me know, thank you
@@dadmichaelp request 24 hour urine collection, full blood tests, a renal angiogram (kidney imaging), a CT, MRI or PET scans may give an answer, pheochromocytoma's are really serious and they mess you up in many ways and when overlooked can be fatal, ask questions, push for answers, i hope you recieve the best treatment possible, get the answers to your questions and the best result possible.
@@alla8226 I am RH Negative, A- and have experienced several rare health problems. Just curious.
@@alla8226 they began the blood tests Friday. Started me on medication for adrenal tumors. Shocking appointment. I seem to have every symptom listed. It definitely would explain so much; BP readings off the charts, anxiety, heart palpitations, etc. Looks like next week will be full of tests. Just turned 48 a few days ago. wow.
You are beautiful, you are champ. God bless you.
Where did you have surgery as i was dx in 2008 but never treated and severly ill now with dizziness fatigue kidney failure stroke.heart rate prob high bp. The usual other symptoms.high catecholomines . as the dr who dx me left and none of the others know what it is
Thank you for sharing... I am in the diagnostic process, day 34 in bed. I have every symptom and cardiologist doesn't believe it is cardiac. I turned in my 24 hour urine collection yesterday so now I just wait. My BP is all over the place. I'm having chest pain and wearing a cardiac event monitor. I'm scared to be quite honest.
Donna Graham... hopefully they've removed it by now. They're dangerous. I had mine removed 3-1/2 years ago and it would never have been found had i not had an xray on my lower back. It's very intrusive and a huge problem if not resolved. I hope you find resolution.
Donna Graham
Hopefully they test you during or right after symptoms, or it may not show up as a rise in cetacolamines
How are you doing?
I to had pheochromocytoma. Mine was 8cm and I have a huge scar as well. I felt great for a while and now I feel really tired. Scanned showed no new tumor but hopefully we will get to the bottom of this soon. God bless
Karen, we wish you the best and hope you get to the bottom of your new symptoms. Please let us know if we can do anything to help.
Had tumor removed in 2012.Adrenal tumor was cancerous.Removed all in one piece.I have been ok since.I feel very lucky.
@@judyhyland499 are u on meds?
How are you doing?
I’ve been having severe sweating, I’ve been having these attacks where I have a huge adrenaline rush that hits me fast and hard where I start throwing up, severe sweating where I’m soaked from head to toe, heart beating so fast, sweating in my lips,. The attacks last for 10-15 min. I feel like I’m going to die. I also have increase in blood pressure and heart rate. I’m extremely tired. I cannot do anything physical. My Rheumatoid Arthritic dr is the one who believes I have pheochromocytoma. This has been the scariest time of my life. I’m not beginning tests before they will do any treatments etc. I’m so very scared. I’m 51. I want to live but at times feel I may not make it. 😢
How are you?
It's EXTREMELY scary! Your episodes sound almost identical to mine. I'm gonna ask my doctor to get tested for Pheochromocytoma. I get the not thinking you're gonna make it. It truly is that bad. Prayers. 🙏
Hi Kirsty. I am half german and I've been having problems my entire life now that I look back. I'm still trying to get a confirmed diagnosis of pheo but I know in my gut that is what it is, no pun intended. I have had pain in my upper rt side and back for over 3 years now. 3 years ago I had a health crisis which I think was exacerbated by taking Sudafed at the time. I basically crashed but they couldn't find out what was wrong. My basic blood work was ok in the ER. They gave me medicine for the headache and nausea and sent me on my way. I was too ill at one point to even seek help. Is there an email address I can message you at?
Kim, by now I hope you have found the problem and ate doing well. I too am a pheo surviver. It took me 3 years to find a doctor smart enough to give me a correct diagnosis. That was 22 years ago for me. I am having syomptoms again and struggling with finding a doctor smart enough to figure out this crazy puzzle.
Avoid anything with caffeine; avoid eating ready prepared foods or eat food no more than two days old from cooking; it is better to freeze your food after one day and take it out of the freezer and thaw it to eat a few days later - as this reduces the level of tyramine within the food. Avoid smoked, cured or pickled foods - contain high levels of tyramine.
Refrigerate your meals as soon as possible no more than two days left in a fridge. All cooked foods produce tyramine which is a naturally producing enzyme in all foods which increases on a daily basis. Stick to a healthy diet, concentrate on the colour of the foods, orange, red, green - you eat to avoid cancers as these paras and phoes manifest themselves in slow growing tumours, which could become malignant. Look up the effects of tyramine and the type of foods to avoid and you will be able to live healthily. Exercise regularly.
I have an inoperable tumour which continues to secrete high amounts of adrenaline in my system but I am under a great endocrinologist who is helping me greatly. I am also on BP medication and looking to undergo peptide therapy to shrink the tumour because of the extremely high BP levels recently.
It was explained to me that I had paraganglioma, and not phoechrometomia, given the 3 tumours which were discovered, were outside my endocrine. I undergo yearly MRI scans.
I had the conditions for most of my life but only found out the name of it when I turned 60. I am on a quest to stay health and enjoy life. Palpitations and anxiety are almost non-existent for me now since following a healthier life style.
I am pheo patient 2021 surgery in banglore msramaiah hospital no symtoms pain and prick the needlepain lower qurdent
hi Kirsty was the pheo causing the uti?
yes they do if theyre in your bladder , urinary tract. x
Sporadic sounds a lot another term they often use when they cannot find the cause of “whatever”, and the simply call it Idiopathic - I nickname it the Idiot’s Path to Nowhere, as they know not what is going on and then just treat the symptoms. I currently have a boyfriend who had a dirt biking accident and he was in the ER and they told him he needed to get looked at ASAP as his “adrenals were trashed” once he got home. He also had a broken right wrist and his lungs had deep bruising a couple of broken ribs. We have been waiting five months to get an answer to what is causing his mass on his right adrenal gland, whether it is due to hormones and/or a malignancy. His surgeon will then tell him his options. He also has found out that he has 7 nodules around his thyroid and those need to be biopsied next week. We continue to do research as I am one who is always dealing with chronic health issues and therefore I do no mind doing so at all. My boyfriend is doing his best to stay positive, but medical issues are something he has a hard time with as he is the first to admit he is a hypochondriac. So the less He knows the better. He just lets me help out by doing the research and I pass on the info to him so he can process the information first, then we can discuss any questions he has. He was a commercial trucker for nearly 40 years, so there IS a good chance his adrenal mass IS hormonal. So thanks to all of you who are sharing your stories on this TH-cam channel as it truly is very rare. Luckily we live in a large city and we have an Endourologist who is able to take care of him now. Best wishes to full recoveries - even if it does make a second appearance!! It can be so hard while waiting for a doctor to finally make a diagnosis, thus I applaud all of you who kept seeking help!!
Great video just need to speak louder. Im a nursing student i use story's to help me pass thank you and good luck on your journey
Kaccidy Katorr feel free to use any of the videos we have archived on our channel. Please let us know if we can help you in any other way, and thank you for helping to raise awareness about pheo/para.
Hi