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Rare blood condition

jane121jane121 ListenerPosts: 4Member Listener
Hi my partner has a rare blood condition whereby his haemoglobin levels are very low, he has had numerous blood transfusions to increase the levels and I give him a subcutaneous injection once a week of oepotin zeta. He is currently on a research programme at the hospital as they cannot find out why his red blood cells are dying off too early.

Replies

  • Ami2301Ami2301 Disability Gamechanger Posts: 5,402Community champion Disability Gamechanger
    Hi @jane121 welcome to the community! Sorry to hear this, has your partner been tested for Vitanin B-2 Deficiency?
    You're a fighter. Look at everything you've overcome. Don't give up now!
  • jane121jane121 Listener Posts: 4Member Listener
    Yes, he has been tested for everything, he is currently under a top haemotologist at the hospital and they are stumped that he is still walking around with a haemoglobin level of 7.4 hence asking him to be included in a research programme .

  • jane121jane121 Listener Posts: 4Member Listener
    My partner had sepsis in August 2018 which has left him with 16% kidney function, severe weight loss, fatigue with difficulty in walking and doing everyday things, he also has a heart valve problem which he needs an operation but is not fit enough at the moment.
  • Ami2301Ami2301 Disability Gamechanger Posts: 5,402Community champion Disability Gamechanger
    I hope he receives a diagnosis soon, has he had this since birth or has it started recently?
    You're a fighter. Look at everything you've overcome. Don't give up now!
  • jane121jane121 Listener Posts: 4Member Listener
    He was diagnosed with sepsis 15 years ago and had the same problem with low haemoglobin levels, the consultant at the time said with his levels so low he should be horizontal or in a coma but he was sitting there reading a book!!!
  • Ami2301Ami2301 Disability Gamechanger Posts: 5,402Community champion Disability Gamechanger
    Blimey! I really hope he gets a diagnosis soon :)
    You're a fighter. Look at everything you've overcome. Don't give up now!
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