Haemochromatosis Society UK

Haematomchrosis update

Hiya all. Hope u r all keeping ok as not been on for a while. Well it's nice to have some good new after my week from hell. I've had my blood taken on Tuesday and phoned for my results today. An they're down to a fabulous 52 .When i was first diagnosed with haematomchrosis my level 1950. So thankfully i have some good news with my damn knackered body .😃

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Im so happy for you!🏆🥇

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Thankyou. 👍

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Way to go!

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Thankyou Michele it's the first bit of good news I've had all week.. i forgot to ask you the. How u getting on. Xx

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Your welcome Debbs, im so very "happy" for you, you sound spirit lifted, good news does that,, thank u for sharing good stuff with me

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After the experience I'd had at the beginning of the week having a panic attack on the mri it was nice to finally get some good news. This might sound strange but another thing that makes me feel good is having my tattoos done. It just makes me feel good. Your very welcome. These sites are really good as it's nice to share thing with others and also get updates from yourself and other friend's on here.

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Im hurting today, i did something dumb,i took my dog for a walk today after we had a nasty noreaster last night,,remember i need surgery on both knees, well i was climbing over plowed mounds of snow trying to get to the sidewalk. i got really restless as im having a real hard time laying in a bed all the time,,i needed to get out of here for a bit,,,now im paying for it, ,laying here in bed with a ice pack on each knee,,,ouch!!

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Oh never that's not good. I think your as bad as me. You do to much in one go and then suffer. Try and get as much rest as you can. We are our own worst enemy sometimes. Hope your feeling better soon. How are you getting on with the oil? Sending gentle hugs your way. Xx

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Your 100%right, im abusing myself, Im afraid to stop

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Same. When i feel ok and I'm not having a mega bad bad i try and do as much as i can but end up doing myself no favour. Are u still resting up. Did u say it's New York that you live. So how far time wise are you ahead or behind the Uk? So are u married with family?xx

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Well, i have my own little home in arizona, my friend from high school flew me to ny on a medical flight ($25,000), he married me so i can have really good health ins, but now i cant get back to arizona because i cant sit long enough to fly or walk or stand long enough to get through security, the day would take about 14 hours from house to house,,we thought there would have possibly been better docs in ny, this is where i learned about nerve damage and nothing can be done and ive tried it all, prob is i didnt think that the weather would play a part in increasing pain here in ny, long, cold, damp, snow, hills and i need flat ground, arizona is warm, dry, flat, easy,,,its 3:00 pm here right now but sunday we change the clock one hour ahead for daylight savings time

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I have a son who is still in arizona he is 26, i married my friend this last august who flew me in to ny from arizona, on that med flight i was able to lay down the entire 7 hour flight with my little dog between my legs, today i finally made a call for a consult with a new pain mgmt dr, i havent seen one here in ny, my primary dr has been giving me the pain meds, the one thing i havent tried is a pain pump, ive been putting it off, i really dont want more hardware in my body and thats the last thing i can try, they put pain meds directly inside the spine on the area where the pain is coming fro,,it was a miracle for some people, others had problems like infections,,,but i have to try,,i dont feel confident that i will be able to do the physical therapy after the knee replacement, physical therapy is the most important part,, i know i cant do it the current way i am, if i go ahead the way i am and do that surgery and then i am unable to do the pt im gonna be in big big trouble, i cant imagine what would become of that, i barely get out of bed now, how could i excercise? Im sorry im sounding negative, but its really Scary stuff, sometimes i hesitate telling you, i dont want to make anyone feel down

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Hi Michele. Firstly please don't hesitate and worry about telling me things about Your health it doesn't make me feel low at all. God that was a lovely thing that your friend did for you. Blimey that's a lot of money for the flight. I like hearing things that you tell me as it give me an understanding of the person you are. So do you see much of your son. I get How your feeling when u say you have tried everything and then pain pump is your last option. I'm sort of in the same boat. I told you my gp is good. He has told me that if i find anything on the net that i think might help he said to let him know and we can try it. The list is endless of things I've tried over the years the same as you it's soul destroying I'm 44 this year and my body feels that of a 90 year old. I have no quality off life. I do worry about what you when u saying after you have your knee replacement done your going to struggle with doing the physio . Surely they can find you some other exercises to help with your recovery.

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There a battle here in the united states, we are having a aweful opiod crisis, doctors have been overprescribing so many prescriptions and its been deadly for many overdosing, however it is now effecting those who have crippling chronic pain, when i first arrived on ny i made an appt with a pain specialist, i explained how i had been bedridden with the many injuries and surgeries,,when i told him i had to flown on a medical flight to get here, he laughed,,i am suffering horribly and didnt deserve to be mocked and not believed that i wad speaking the truth,,it hurt so bad and it frightened me,,i came help and not to suffer by him not prescribing pain medicine thst i need daily,,i understand that thete are too many that are just addicted and are not in chronic pain and drs need to be very careful, when i questioned him if he had ever treated anyone that had endured severe nerve damage he said no that he had not,,so i said then how can you possibly make a educated decision how to treat me?? He remained quiet, he couldnt answer me, doctors are reluctant to treat with reason, but now people who are suffering are afraid of not receiving the care they need and deserve,, we should be heard and not judged, treated with respect and dignity not treated like a cattle in a herd, by denying medical treatment only adds addition pain mentally and physically,,i pray this dr i made the uocoming apot with is kind and compassionate, from what i learned there are about 25 patients he has helped currently with pain pumps, this is giving me hope

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Michelle, I just read this post and have to let you know you are not alone. I'm a haemachromotosis carrier with iron over load, Hep C(?) supposedly cured after 25 years of damage, cirrhosis, chronic pancreatitis, calcification of my splenic vein, my pancreas, have psuedocysts that rupture and reoccur, numerous bone spurs and calcification, an Undiagnosed autoimmune problem, diabetic neuropathy (without diabetes) can barely walk, Raynauds syndrome, high ferritin levels, iron overload, low WBC & platelets, gout, the list is endless. I also have degenerative disc disease and suffer in severe pain. I cannot work. I am feeling the "opioid epidemic" in Colorado as well. I have Medicaid and Kaiser Permanente (you said you are in AZ and I know they are there). My PCP manages my pain with opioids and occasionally steroids. My brother has had an internal pain pump for 10+ years, Medtronix, and it has given him nothing but trouble. It may sound like a great answer but do your research on this. His pain pump was recalled. No Dr told him, a family member found out. My Brother has had over 5 surgeries to fix this pump and when it works it works great. I hope the best for you. I know my son has this disease as he fits into all of the symptoms and his ferritin levels were over 800! Try talking to your PCP. Medicaid wants all patients at or below 120mg equivalent of Morphine and I just squeak by at 128! Good luck. Talk to me anytime. I understand what you are going through! I've been treated so horrible for being on opiates and I've been judged, denied meds, under medicated in hospital stays (I have VERY LOW BP with orthostatic hypotension so they don't read my chart and assume it's the pain meds) I know it's hard to have hope in our country the way out health care sits today. We need to unite and make our lawmakers understand that EVERYONE has the right to have their pain treated! Keep me posted! Tara

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That's fantastic news. No matter what I do, can't quite get in the normal range .Congrats!

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Thanks. My level is 50 . What is your level ? Are u having regular blonds taken. At 1 stage i was having them done on a weekly basis then fortnightly now every 4-6 wks apart. I'm sure you will get there. 😃

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120 ish . Having about 8 a year and have done for 5 years now .Never quite comes down low enough for me though..... 50 is really good .Sadly, my doc is a bit dippy and needs a bit of managing ,ha ha . I stay with the same one because the ward staff are fantastic . They help me manage her ! 🤣

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I changed the hospital where i was first diagnosed as it was to far away my husband or son would take time of to take me there so I've changed too pine closer to me so if they couldn't take me i can actually take myself. However i suffer for driving there myself as it kills my knees and back. Then I knackered. I know what you when you say about your dippy Dr. I have a fab repour with my gp. He takes time to listen to my every need . There is many a time I've left mind in tears. So you've had it a long time then by the sounds of it. 🙂

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Fabulous! How are you feeling? I hope TONS better! 🌺

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