DuodenalSwitchaRoo
Taking a long scenic route!
Just a quick update where I can add more info (hopefully helpful lol) about my journey to iron infusions.
My ferritin was a stable 11 for over a year and my Hb was just about in range, on the very low end. Then it all went tits up. In Dec I was ferritin 7 and Hb 10, plus all my other iron deficiency anaemia (IDA) markers were out of whack.
I contacted my bariatric team in Feb/March after getting a copy of my own labs as NO ONE flagged it up...NO ONE! Get copies of your labs EVERYONE!!!! A week before I had a copy of my labs, I was sat in the GP complaining of severe dizziness.....like really really drunk dizziness. And I was diagnosed with ear liquid imbalance. The prescribed exercises did NOTHING...cos you know....its not an ear issue but IRON!
So, my surgical team recommended I go the local route (my team is in London, a 2.5hr drive away on a good day) as the local wait list was likely to be shorter. I went BACK to the GP to show my labs and request a referral to haematology. They were reluctant, but I have texts from the bariatric nurse to back me up. I got an urgent referral in March. The very first available appointment was April 28th so I took it! That was last Friday.
I expected to have to fight for iron infusions, as we know, the NHS is cash strapped, so I brought as much info as I could think of. Most of it was unnecessary, such as all the medical journal articles about the DS and IDA. What WAS really helpful for the hemo was a diagram of the DS, my op report to show my common channel length, my current vit schedule, name and dose of every oral iron I have tried and a years worth of DS labs. With all this info, she was able to understand that despite super duper dosing, due to my intentional configuration, absorption via tablets was not going to happen.
Tomorrow is my first of 2 infusions. Apparently there is a new fandangled type of IV iron that takes less than an hour. YAY! Not spending all day in hospital!!! Once I have the infusion tomorrow, I am then to come back in 2 weeks for another. After that, I have a follow up appointment in August (3 days before which I must have a blood test to see where the infusions have left me) and at that point more infusions will be scheduled as needed.
It was comforting that the hemo could not understand why the team hadn't flagged it, why the GP hesitated to refer and why, for the love of god the NHS doesn't cover the correct vits for DSers. I cried. I have to admit this bout with anaemia has scared me as Im afraid somedays I won't wake up and the chronic exhaustion has my mental health hanging on by a frayed piece of used dental floss. (You're welcome for the disgusting mental image)
Whilst crying, she told me not to worry, I was getting infusions ASAP (today is a Bank Holiday so tomorrow IS ASAP) and that I would be under her/her team forever more and they would get me better.
There is hope, BUT, you have to have your wits about you, think of EVERY argument they could use against you, plan for it and bring a rebuttal, always ALWAYS ALWAYS!!! get copies of your labs because no one else will give a flying shit what your numbers are and once you get into hemo, life seems more ok and less worthless.
Here's hoping tomorrow goes well
Gimme the liquid gold!
My ferritin was a stable 11 for over a year and my Hb was just about in range, on the very low end. Then it all went tits up. In Dec I was ferritin 7 and Hb 10, plus all my other iron deficiency anaemia (IDA) markers were out of whack.
I contacted my bariatric team in Feb/March after getting a copy of my own labs as NO ONE flagged it up...NO ONE! Get copies of your labs EVERYONE!!!! A week before I had a copy of my labs, I was sat in the GP complaining of severe dizziness.....like really really drunk dizziness. And I was diagnosed with ear liquid imbalance. The prescribed exercises did NOTHING...cos you know....its not an ear issue but IRON!
So, my surgical team recommended I go the local route (my team is in London, a 2.5hr drive away on a good day) as the local wait list was likely to be shorter. I went BACK to the GP to show my labs and request a referral to haematology. They were reluctant, but I have texts from the bariatric nurse to back me up. I got an urgent referral in March. The very first available appointment was April 28th so I took it! That was last Friday.
I expected to have to fight for iron infusions, as we know, the NHS is cash strapped, so I brought as much info as I could think of. Most of it was unnecessary, such as all the medical journal articles about the DS and IDA. What WAS really helpful for the hemo was a diagram of the DS, my op report to show my common channel length, my current vit schedule, name and dose of every oral iron I have tried and a years worth of DS labs. With all this info, she was able to understand that despite super duper dosing, due to my intentional configuration, absorption via tablets was not going to happen.
Tomorrow is my first of 2 infusions. Apparently there is a new fandangled type of IV iron that takes less than an hour. YAY! Not spending all day in hospital!!! Once I have the infusion tomorrow, I am then to come back in 2 weeks for another. After that, I have a follow up appointment in August (3 days before which I must have a blood test to see where the infusions have left me) and at that point more infusions will be scheduled as needed.
It was comforting that the hemo could not understand why the team hadn't flagged it, why the GP hesitated to refer and why, for the love of god the NHS doesn't cover the correct vits for DSers. I cried. I have to admit this bout with anaemia has scared me as Im afraid somedays I won't wake up and the chronic exhaustion has my mental health hanging on by a frayed piece of used dental floss. (You're welcome for the disgusting mental image)
Whilst crying, she told me not to worry, I was getting infusions ASAP (today is a Bank Holiday so tomorrow IS ASAP) and that I would be under her/her team forever more and they would get me better.
There is hope, BUT, you have to have your wits about you, think of EVERY argument they could use against you, plan for it and bring a rebuttal, always ALWAYS ALWAYS!!! get copies of your labs because no one else will give a flying shit what your numbers are and once you get into hemo, life seems more ok and less worthless.
Here's hoping tomorrow goes well
Gimme the liquid gold!
