Treatment plan?

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

 

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.

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.  

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

So glad you have that sorted now, onwards and upwards!

Best wishes

Jenxx

But surely Chris, Michelle shouldn't be the one to answer that question?

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

 

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!  

 

If they are not doing the nose swab then report them that is unacceptable and very serious breach of protocol

regarding tests these do not need to be done every session but when they do them you do not have them done before but during (they clamp while you are having it done then they run it into the separate containers)

So primrosegirl every time you go they are using two needles if so is unnecessary they could just reduce your bag size and do labs at same time.

I think you people need to start complaining if the practices are being done this way that is not right.

I really hope they are checking your vital signs before hand as well blood pressure/oxygen/temp all should be on portable trolley takes less then 5 min.

 

Actually I am very pleased with the treatment I am receiving at my hospital, the nurses there are extremely caring. As regarding taking blood from the same bag to alleviate using two needles, by the time the hb results came through, (15 mins. ) the bag would be full so it would be too late! Anyway the monthly vene seems to suit me very well, I have no problem recovering. I have my next one on Tuesday, and I'm sure the girls there are looking forward to the cake I take them to have with their tea!

The Liver nurse I saw today gave me a diary with my first four appointments booked in. (one a week) She told my after my second or third appointment book my next four appointments. I guess this will go on until my levels are acceptable.