Is everyone given a treatment plan for venesections ? Only I get asked how often I’m supposed to be having them done but I haven’t been informed how often, Just given another appointment afterwards. Just wondered if it’s the same for everyone? Thanks x
Dear Michelle, it seems like you are not seeing specialists about your HH, I saw a haematologist after being referred by my gp and he told me what would happen and how often I would have vene. I go to the haematology dept at the hospital where the nurses are all trained specifically to take blood or infuse. They are passed your information by the consultant. I assumed it was the same for everyone.
Maybe you should ask your gp to see a consultant Haematologist to get it cleared up for you. Good luck,
Best wishes
Jen xxx
Hi Jen I went to see the haematologist at the hospital in January and he suggested that I will only need about 10 venesections as my ferritin wasn't massively raised, but when I go for the treatment the nurses usually ask me how often I'm having them done but I've never been told how often?
I've been to see the GP today and they are quite annoyed that the haematology dept haven't sorted this out and even say that the letters to them are very vague over my treatment?! I'm in the process of sorting this out with the nurse specialist at the hospital as I am not going back to the same hospital for the procedure after the last episode I had there.
Looks like you have to do all the sorting out yourself up here!
Hope your ok? and getting sorted out with your ENT appointment... Good luck with it xx
Best Wishes for now
Michelle xxx
You are right Michelle, a lot of things you need to do yourself, but hopefully now it's been brought to their attention things will be a bit more organised!
I got an appt with ENT and it's not until May.... but lately I haven't been bringing up any blood, so fingers crossed! 😊
Take care xx
There is no way to give you an accurate treatment plan. They first have to see at what rate your ferritin levels go down with venesections, then they have to figure out at what rate you load iron. These things can’t be predicted. Only when they have figured these variables out can they give you a maintenance or treatment plan. To give you a treatment plan beforehand would just be guessing.
But surely Chris, Michelle shouldn't be the one to answer that question?
I'm new to this and am only having my 1st one this Thursday but my hematologist told me we will start at one every 3 weeks and go from there. My levels are not that bad currently but I did show alot of iron in my liver biopsy.
Good luck with your 1st venesection on Thursday Jessica!
Just remember to have something to eat and drink lots of water before your appt. What is your ferritin level?
Best wishes.
Thanks Jen, I think things will get sorted out properly now as the nurse has mentioned every two weeks for the venesections to be done so at least I know what I'm doing now! It's great to hear you've been feeling a bit better lately bet it's a relief for you as it's always worrying if your bringing up blood, it's a bit of a wait isn't it to get any tests done though isn't it?!
I've had to wait until April for cardiac scan and angiogram to be done since I came out of hospital with chest problems in January!
Good job were fighters and made of strong stuff us lot xx
Do take care and best wishes for now xxx
Good luck with your first venesection Jessica xx
My ferritin is actual normal at 69 as is my iron at 170. Iron saturation is at 69%. My doctor dint expect to see iron in my liver biopsy but because there was so much in my liver he is proceeding with the venesections. I think he is actually pretty confused on why there was so much iron in my liver given my most recent lab work was pretty decent However I’ve noticed it does have a lot to do with the timing of my blood draws for instance when my iron saturation was at 100% I went back and looked at my calendar and sure enough I had started my period the very next day and so then the next time he drew it was down a lot more so I really think it coincides with my cycle.
So glad you have that sorted now, onwards and upwards!
Best wishes
Jenxx
I’m afraid I disagree with you there Chris. The consultant works out roughly the amount of venesections for the level of ferritin you have at the time of consultation. MIne stated I would need around 10 to be done. The point I am making is that knowing I need a certain amount of venesections to be done the next step is to say how often they should be done as when I went for my venesections the nurses would ask how often I would be getting them done? Surely they should know that and not me?! Hence, having a treatment plan!
All the best
It varies they tend to look at your numbers and if they are very high weekly if not that high you can get away with 2 weeks+
you should have a diary and every time you have a treatment you get them to sign it and state how much was taken this also has date plus you can put in your results from tests to monitor your numbers.
the nurses tend to see a lot of people so they wont remember your history.
I keep my own record, scribble down the numbers when I'm there and put it in my computer when I get home, I like to compare the figures.... It makes me feel better when I see the ferritin numbers going down!
The only diary/record I have is my own records which I keep of the appointments. I have only just been told how high my ferritin is after seeing my GP and asking to know?!
I certainly don't expect the nurses to remember my history, even though the small hospital I was attending only have 7 patients that have venesections there. They didn't even have my records last time, or a record that I was even attending! I have since been transferred to a larger hospital that is properly set up for venesection procedures so I will hopefully start getting a proper treatment procedure from now on.
So as you see miller it is not about expecting the nurses to remember me or my history above everyone else, it's just to give me a proper treatment plan so I know when I am going to have my next procedure done and inform my work etc, as we all still have a life even though we have HH.
All the best
Most places in the UK will give out venesection diary strange if a lot of you have not been given these haemochromatosis society gave them out to all the haematology clinics so it might be worth asking.
you can make one in excel then print it out anyway and each time give it to the nurse ask them to put in details like
Date
Amount Taken
Hb (Haemoglobin)
SeFn (Serum Ferritin)
TS (Transferrin Saturation)
Location Taken From
Nurse
Test Results (you may have to enter this yourself either by calling them or just ask them fill it in next time) also they tend to not do tests every sessions I know the guidelines states they should but they don't that's more for donation people
Last one if you have had nose swab test done (this should be done at least every 2-4 weeks)
I would be interested to hear how many people on here have had a nose swab test done. They don’t even do the right blood tests,concentrating on ferritin alone. It’s hard to persuade them to do T Sat and I’ve never had haemoglobin done before a venesection.
At the hospital I go to they always do an hb blood test check before venesection, which in my case is essential because my hb drops to 120 if I have vene every 2 weeks, and because of that the haematologist has changed it to once a month, so my body has time to recover.
I’m in total agreement with you Eric it’s hard to get them to give you any form of information whatsoever or blood tests etc sat tests etc, let alone a nose swab done!, I’ve been informed today by the specialist nurse that the dept is too busy to do a venesection for me on Friday (as I’m suppposed to be every two weeks) now got to wait longer until next Thursday due to changing hospital as the last one messed up my venesection. Not impressed with my HH treatment so far feel it’s been a sham!