In The Beginning was "Not Knowing, Blissfully Ignorant"
I am 50 at the time of writing this blog, I have been fortunate enough to never really need any medical attention in my life, I do not know the name of my Doctor and I barely attended enough to remain on their books "admirable, yes" but also dumb.
I had a lot of people start to die around me which had profound psychological effects which made me think that I was maybe one of the lucky ones or living in ignorant bliss.
At half a century I decided that I would make an appointment to see a GP and have an MOT a health check just to make sure everything was working and where it should be. My bloods came back with anomalies and I kept returning for further tests, its worth knowing at this point that I had been having pain in my lower back , my knee the previous year was giving me extreme pain and I was experiencing memory loss, all attributes of Heamochromotosis but I didn't know that yet. My symptoms had been gradual so therefore never really come to my attention all at once. The memory loss or "Brain Fog" as its known was in my opinion the onset of early Dementia.
My world was about to change on February the 27th so the day before I decided to enjoy my last day of "Not Knowing" I took a drive in the camper and parked up at Cymyran Bay, Angelsey to reflect the sunset one more time in my ignorant bliss.
At half a century I decided that I would make an appointment to see a GP and have an MOT a health check just to make sure everything was working and where it should be. My bloods came back with anomalies and I kept returning for further tests, its worth knowing at this point that I had been having pain in my lower back , my knee the previous year was giving me extreme pain and I was experiencing memory loss, all attributes of Heamochromotosis but I didn't know that yet. My symptoms had been gradual so therefore never really come to my attention all at once. The memory loss or "Brain Fog" as its known was in my opinion the onset of early Dementia.
My world was about to change on February the 27th so the day before I decided to enjoy my last day of "Not Knowing" I took a drive in the camper and parked up at Cymyran Bay, Angelsey to reflect the sunset one more time in my ignorant bliss.
Cymyran Bay "Reflecting On My Ignorant Bliss"
The following day I attended my appointment at the Glan Clwyd Hospital at Bodelwyddan in Nth Wales , I took the wife with me as she has a good basis in medical knowledge having worked in the NHS for 20 + years. We ventured down corridors being gently ushered and directed by various receptionists until finally we faced the correct department. We were called in and I sat next to the Consultant who kindly left me on no uncertain doubt that I had a condition (all my life) and it was called Genetic Haemochromotosis. After then I was in shock and only started to filter certain words, I was numb I understood "Normal Iron Count in an adult was 50 to 100 and mine was "2000!!"
I was now 3 times more likely to develop Liver Cancer, 3 times more likely to develop Pancreatic Cancer, Cardio Myopathy, heart disease, the diseases and chronic conditions rolled off the consultants tongue and it was a big wake up call.
I was now 3 times more likely to develop Liver Cancer, 3 times more likely to develop Pancreatic Cancer, Cardio Myopathy, heart disease, the diseases and chronic conditions rolled off the consultants tongue and it was a big wake up call.
I would start a course of an age old tradition of blood letting to remove the iron from my system.
"not quite this primitive"
"Too much Iron!"
So now I have a life long condition which requires life long treatment and I have the rest of my life to get used to it.
Being my age I have already got some concerns as the iron has been building up and depositing in my Liver and possibly around my Heart for some time and its time to for some more waiting to find out just how bad things really are....
"Fast Forward A Few Weeks"
Its now end of March, I fast forwarded because I needed to time to get use to the idea and also to find out when my appointments would kick in...
I attended hospital on the 26th of March, I parked near the Marble Church *means nothing to you* but it meant a good 10 mins brisk walk was required to get there. This got the blood pumping and and I drank plenty of water too. When I arrived I was flushed in the face and peeing water as clear as Gin "I was ready"
The Nursing Staff were great a warm welcome and happy to answer any fears or questions, I was taken to a ward and sat on the bed, BP taken, weighed and then time for the Venesection (VS). The needle looked "lets say ample" for extracting a pint and I filled the bag in about 4 mins!, I felt ok afterwards I had a hot chocolate and then relaxed for 20 mins then spoke to the nurse as she made me some up and coming appointments to stick to, I would now be weekly (VS) and blood tests every Monday.
My Arm after Blood Tests "Tidy Job"
I had my bloods done this week and will hopefully know on Wednesday how my levels are but I don't think much will have changed on my first VS. I have a Cardiogram on the 18th of April so things are really moving along and it will be good to know what damage has been done or I'm lucky not at all!
Thursday 11th April I am sitting in the garden , I feel ok apart from the gut wrenching feeling of losing my dog and this is taking its toll emotionally and physically, I feel sick and weak, I normally bounce back but having this condition makes you weak at times when you need the strength to pick up and carry on, so what do I do? I write about it, after all this blog is about how GH affects me as a person and about what I do to get my condition improved and the hurdles I face along the way.
Ok back to it Wednesday 10th April I attended hospital and had a morning appointment instead, guys this worked for me the best so far, its early days yet so I'll see next week if it wasn't just a fluke. Last week my appointment was in the afternoon and as I work nights it meant 2 hrs sleep then up and into hospital "VS" then back home, try and sleep then back to work that night. It clobbered me, I was nauseous and lethargic and it took 3 days to clear.
So my first try at morning appointment for VS yesterday worked out a massive improvement for me, no feeling sick, a clear head and energy levels pretty normal.
https://www.britishlivertrust.org.uk/liver-information/liver-conditions/haemochromatosis/
Echo Cardiogram 18th April
I attended my appointment and sat there looking at my heart as the valves flapped and whooshed the blood around my system, it was interesting and it was there that I started to ask my questions about my potential and the health of my heart.
I was told that my heart wall was 1.5 thick (it sort of ment nothing) but that would be normal with the slightly raised blood pressure I was having at the moment. The technician said my heart and blood flow were good and nothing to worry about, that was a load off my mind!
My next was down the corridor to the next test and that was also an ECG but this was done with electrical leads that and heart rate reported at 63 BPM while resting was also given the all clear.
Here is the letter depicting that sent out 03/05/19
This week I have been given the week off VS because the Nurse has a holiday so I get one too! its nice to not have to attend and it gives me veins a chance to repair as I do worry about things like Vein Collapse and have seen some nasty pictures on Facebook Group. As of yet I'm one of the lucky ones.
How Do I Feel 2 Months In?
I am doing ok, some slight joint pain in my knee again but some exercise should sort that out and this week I dug my bike out and went for a ride and I need to start my swimming again as this dropped off when I started my VS my first 2 weeks were difficult I felt shattered but now they are changed to morning appointments I am back in the saddle so to speak.
I still worry about my Liver as at the moment there seems to be Good News Good News so I'm expecting the bump in the road after 03rd of May but I so want to be wrong "I mean who wouldn't?"
Started taking my Cider Vinegar every morning again as the heart burn returned and now its gone again, also I had two fairly lengthy nose bleeds (Home made VS!!!! winner) I found myself sat nurturing them rather than trying to stop the bleed "well every little helps as they say"
I had my Liver Scan on the 03rd of May and the report from the Technicians carrying out the scan was that its fatty (everyone seems be told this) but there are no visible signs of damage.
VS commenced again last week , gave a smidge more than I should but that will teach me for keep the nurse chatting but no harm as I had a week break previously.
This week was a good test as we were away in the Campervan on Angelsey and I drove to the hospital and had my VS, all went to plan and my Stats were taken, drank copious amounts of Lucozade and then after resting up for half an hour I was allowed to leave and drove back to Angelsey and took it nice and steady for the day and that was the way ahead.
So now I know I can pretty much function normally afterwards, but I did feel weak later in the day when we went shopping and walking around the aisles.
Thursday 11th April I am sitting in the garden , I feel ok apart from the gut wrenching feeling of losing my dog and this is taking its toll emotionally and physically, I feel sick and weak, I normally bounce back but having this condition makes you weak at times when you need the strength to pick up and carry on, so what do I do? I write about it, after all this blog is about how GH affects me as a person and about what I do to get my condition improved and the hurdles I face along the way.
Ok back to it Wednesday 10th April I attended hospital and had a morning appointment instead, guys this worked for me the best so far, its early days yet so I'll see next week if it wasn't just a fluke. Last week my appointment was in the afternoon and as I work nights it meant 2 hrs sleep then up and into hospital "VS" then back home, try and sleep then back to work that night. It clobbered me, I was nauseous and lethargic and it took 3 days to clear.
So my first try at morning appointment for VS yesterday worked out a massive improvement for me, no feeling sick, a clear head and energy levels pretty normal.
The Nurses are doing a great job of almost not leaving a trace at all when I'm undergoing a VS.
They take 450mls of blood each time and I'm now on a total 1350mls extracted in 21 days.
The bag is on top of scales so it can be weighed as it fills, you will get tired and you do need to listen to your body.
This was my blood pressure after my VS, prior it was 141 over 87.
Next week I have an ECG to check for damage to my heart, I will post when I know the results, well thats it for now, have a read of the condition in the link below and if you suffer with any of the conditions mentioned I strongly advise you speak to your GP or Consultant about your concerns.
Some Helpful Links and Helpline Nos
https://www.britishlivertrust.org.uk/liver-information/liver-conditions/haemochromatosis/
Haemochromotosis Helpline 03030 401102
Some Abbreviated Words Explained
VS = Venesection
GH = Genetic Haemochromotosis
Echo Cardiogram 18th April
I attended my appointment and sat there looking at my heart as the valves flapped and whooshed the blood around my system, it was interesting and it was there that I started to ask my questions about my potential and the health of my heart.
I was told that my heart wall was 1.5 thick (it sort of ment nothing) but that would be normal with the slightly raised blood pressure I was having at the moment. The technician said my heart and blood flow were good and nothing to worry about, that was a load off my mind!
My next was down the corridor to the next test and that was also an ECG but this was done with electrical leads that and heart rate reported at 63 BPM while resting was also given the all clear.
Here is the letter depicting that sent out 03/05/19
This week I have been given the week off VS because the Nurse has a holiday so I get one too! its nice to not have to attend and it gives me veins a chance to repair as I do worry about things like Vein Collapse and have seen some nasty pictures on Facebook Group. As of yet I'm one of the lucky ones.
How Do I Feel 2 Months In?
I am doing ok, some slight joint pain in my knee again but some exercise should sort that out and this week I dug my bike out and went for a ride and I need to start my swimming again as this dropped off when I started my VS my first 2 weeks were difficult I felt shattered but now they are changed to morning appointments I am back in the saddle so to speak.
I still worry about my Liver as at the moment there seems to be Good News Good News so I'm expecting the bump in the road after 03rd of May but I so want to be wrong "I mean who wouldn't?"
Started taking my Cider Vinegar every morning again as the heart burn returned and now its gone again, also I had two fairly lengthy nose bleeds (Home made VS!!!! winner) I found myself sat nurturing them rather than trying to stop the bleed "well every little helps as they say"
I had my Liver Scan on the 03rd of May and the report from the Technicians carrying out the scan was that its fatty (everyone seems be told this) but there are no visible signs of damage.
VS commenced again last week , gave a smidge more than I should but that will teach me for keep the nurse chatting but no harm as I had a week break previously.
This week was a good test as we were away in the Campervan on Angelsey and I drove to the hospital and had my VS, all went to plan and my Stats were taken, drank copious amounts of Lucozade and then after resting up for half an hour I was allowed to leave and drove back to Angelsey and took it nice and steady for the day and that was the way ahead.
So now I know I can pretty much function normally afterwards, but I did feel weak later in the day when we went shopping and walking around the aisles.
My stats before and after
VS 08th May 19
VS 08th May 19
14/5/19 Today I'm off to do bloods as I couldn't make it yesterday because of work, at the Glan Clywdd Hospital they have a walk-in system and it works great so I don't have to ring ahead and I'm not chained to a specific time.
This gives me a little freedom when it comes to living my life and routine with twice weekly hospital visits and Venesection.
This gives me a little freedom when it comes to living my life and routine with twice weekly hospital visits and Venesection.
Blood Tests
These are a weekly occurence just like VS. I normally switch my arms too so that it gives time for veins to repair and heal. There are several different vials which are colour coded , I have never understood what each one means, but then again "I don't have to!". In the beginning I was giving several vials for tests but now I am only giving one a week.
These are a weekly occurence just like VS. I normally switch my arms too so that it gives time for veins to repair and heal. There are several different vials which are colour coded , I have never understood what each one means, but then again "I don't have to!". In the beginning I was giving several vials for tests but now I am only giving one a week.
Different vials are used for various tests. The advantage of this condition is that the Health Team are constantly monitoring your progress and always checking for change or anomalies which may be occurring in your organs for e.g Heart, Liver, Kidneys, Pancreas
My Blood Pressure has really improved in such a short time because in the beginning of my VS's my BP would be higher but it seems I'm not so nervous now and more relaxed afterwards. Your pulse is always higher because you have just given blood and all your body knows is there is a loss to the circulatory system.
I also got told this week that my haemoglobin count was good but despite the improvements I am facing I am getting a 2 week break. I'm on holiday and then so is my nurse and she says the break will do me good and give my body a little time to recover.
How Do I Feel After A VS?
Since changing my appointment times I have felt a massive improvement "so if your in the same boat try different times for your VS".
So lets answer this question "how do I feel post VS?"......still knackered!! but a lot better, now one thing I want thing I want to make clear is for the next 36 hrs I feel fatigued but able to carry on. I get out of breath climbing the stairs and feel chest pain but this is normal "I did ask as it scared me" but the tests on my heart previously done are testament to that and my heart is working well (or so they say!).
The other week I walked around the supermarket a few hours afterwards and I started to feel sick and a little dizzy but I just leaned against the trolly for a couple of minutes and it passed. One of my fixes is to have Lucosade , I love the pick me up aspect it gives me, so I buy 2 litres and its drank over the complete day , along with an occasional brew and lots of water.
June 13th 2019
I went for my VS after my holiday which meant I had a nice 2 week break which was good for my veins as they are beginning to hurt at times now. I got the results for my Ferritin Levels and they haven't dropped very much which is a bit of a downer, for the first time in being made aware of this condition I now find the levels are slowing down and have only dropped by a 100 where as they were dropping by a thousand. So its dawned on me that the road is longer than I thought and that weekly VS are now a definite reality. With the levels dropping as large as they were I assumed I was going to be a few months with VS and then reduced to a quarterly or biannual visit, but no its time to face it and what I have been hearing from fellow sufferers of GH that the VS is going to take time ...
Another Set Back
I had an appointment with a consultant set for 19th June but it has been cancelled at the last minute it was with Gastroenterologie Spécialist so was probably to do with my liver.
I also got told this week that my haemoglobin count was good but despite the improvements I am facing I am getting a 2 week break. I'm on holiday and then so is my nurse and she says the break will do me good and give my body a little time to recover.
How Do I Feel After A VS?
Since changing my appointment times I have felt a massive improvement "so if your in the same boat try different times for your VS".
So lets answer this question "how do I feel post VS?"......still knackered!! but a lot better, now one thing I want thing I want to make clear is for the next 36 hrs I feel fatigued but able to carry on. I get out of breath climbing the stairs and feel chest pain but this is normal "I did ask as it scared me" but the tests on my heart previously done are testament to that and my heart is working well (or so they say!).
The other week I walked around the supermarket a few hours afterwards and I started to feel sick and a little dizzy but I just leaned against the trolly for a couple of minutes and it passed. One of my fixes is to have Lucosade , I love the pick me up aspect it gives me, so I buy 2 litres and its drank over the complete day , along with an occasional brew and lots of water.
June 13th 2019
I went for my VS after my holiday which meant I had a nice 2 week break which was good for my veins as they are beginning to hurt at times now. I got the results for my Ferritin Levels and they haven't dropped very much which is a bit of a downer, for the first time in being made aware of this condition I now find the levels are slowing down and have only dropped by a 100 where as they were dropping by a thousand. So its dawned on me that the road is longer than I thought and that weekly VS are now a definite reality. With the levels dropping as large as they were I assumed I was going to be a few months with VS and then reduced to a quarterly or biannual visit, but no its time to face it and what I have been hearing from fellow sufferers of GH that the VS is going to take time ...
Another Set Back
I had an appointment with a consultant set for 19th June but it has been cancelled at the last minute it was with Gastroenterologie Spécialist so was probably to do with my liver.
Hi would you please contact me, going through much the same
ReplyDeleteHi thanks for your comment what can I do to help?
DeleteRegards James