Can I help

[harryandliz1]

Hi

I am Harry and have so far survived Myelofibrosis for 6 years.

It has been a very bumpy ride with no guarantee that you will be still around next week

I have been lucky to have very good medical resources that have kept me going

If my experiences can help anyone please contact me

Harry

[AnBee]

hi Harry What are your geno types and any other variants?

[harryandliz1 in reply to AnBee]

I must apologise as I have not found out my geno type. Will have to ask the specialist next month

[kamiilos]

Hi Harry, happy with your successful treatment. Can you please share more about your MPN journey ? Such as medication, diet, overall approach.

Thanknl you and Merry Christmas

[harryandliz1 in reply to kamiilos]

Hi kamiilos,

By the time I was diagnosed I was basically stage 4 and although the specialist tried different drugs to get my marrow working it was too late. That left only regular blood transfusions, and Jakavie to keep other things under control. However frequent trips to hospital with sepsis resulted in having an iG infusion monthly, as well as daily antibiotic. This has significantly slowed down my trips to emergancy. Weekly blood tests have me now having fortnightly transfusions and it seems to have settled to 2 units one fortnight and 3 units the next. My haemaglobin rarely gets to 100 and that makes doing any streneous work almost impossible. One thing we keep an eye on is the iron levels, and then vary the chealating medication to try and keep it below 2000. However, it varies with a mind of its own He He!!!, and is very hard to predict. Have put in a pacemaker to look after the heart regularity, and is working about 9% of the time. Having a port in for transfusions is a real benefit as the veins in the arms are pincusions from all the blood testing and have lost a vein in my left arm from a serious infection from a catather several years ago.

I hope that gives you some background. I find the best thing is not to worry about the future and treat each day as another bonus, due to great health care. Living for the day works.

Harry

[Buddhability]

impressive Harry! And truly inspirational!!

All my very best wishes to you! And deep, deep respect. 🙏❤️🙏