Firstly a belated Happy New Year to you all
Wow! I have been meaning to post on here for ages, but for various reasons, I just havent been able to find the time. I cant believe though that I havent been posting on here since August!!
The good thing has been that things have been going fairly well in the last few months. The home IV infusions have been going really well. My mum who volunteered to put the needle in has for the most part been getting the needles in the first time. I've also found that having the infusions at home has another added benefit - as I dont have to travel home from the hospital post infusion, I feel much less tired in the hours after the infusion has been complete. Obviously given the amount of time I've been on the IVIG, my body is adapting, but I still find that if I have the infusion done in clinic, Im pretty tired for the rest of the day.
One thing that I did want to happen was an infection-free Christmas. Unfortunately it didnt quite happen. On Christmas Day, I started feeling as though I had been smacked in my face. Within a day or two it developed into a full blown sinus infection. I have never had a sinus infection before, and this was really painful. The pain stretched from the centre of my head, round behind my left eye, along my left hand jaw line and then round to the glands at the bottom of my jaw. The infection was pretty resiliant and lasted around a month. In fact I've been put back on antibiotics due to some minor earache and minor twinges in both sinuses, so it could be that the infection is still there.
In many ways, I didnt really help myself though. Rather than making an imediate appointment with my GP I waited a while assuming at first before the pain got really bad that I just had tootache. I guess my big learning is that if I have any doubtful symptoms, to get them checked straight away, especially given the nature of a condition like CVID.
Showing posts with label CVID. Show all posts
Showing posts with label CVID. Show all posts
Wednesday, 15 February 2012
Thursday, 18 August 2011
One Step Forwards..........
I cant believe its been so long since I was last on here. I wish it could be due to time flying while having fun!!
Unfortunately after the positivity of a month or two ago things have taken a step or two back. After starting to feel tired and lethargic, which was originally put down to me having B12 deficiency, I also found that I was becoming tight chested while sat down and that my lung function tests showed that my lung capacity and efficiency had decreased.
Following on my lung CT scan some time ago, my immunologist has diagnosed CVID with Granulomatous Disease. The first stage of the treatment for the Granulomatous Disease was a 6 week course of Prednisolone tablets, which if successful would be followed by a long term course of Azathioprene.
I have heard a few different reasons given for the formation of the Granuloma in my lungs, and the way I understand it is that my immune system is attacking the antibodies from the IVIG treatment as they are 'foreign bodies'. This forms lumps called Granulomas which sit in my lungs, absorb the immunoglobulin and reduce my lung function - as well as making me feel unwell. The idea of the steroid/azathioprene treatment is supress my immune system and prevent the formation of further granulomas.
The image above shows Granulomas in the lungs.
Thankfully, the course of Prednisolone seems to have been effective, I felt better for the majority of the team, and most importantly, all the chest symptoms have improved. A fortnight ago, I started the course of Azathioprene which has been fraught with difficulty. The worst part has been the constant nusea which thankfully has now passed for the most part. At times it was almost impossible to keep water down. I owe a huge debt to whoever developed antisickness pills!
This week I also had my first B12 injection. It seems that my blood level has been steadily dropping over the last few months. Hopefully regular B12 injections will help boost my energy further. Fingers crossed I can take two steps forward without the need for one backwards
Tuesday, 8 February 2011
Its been a while....
It seems like ages since I was last here and I really guess that it has been!! I hope that everyone has had a great christmas and start to the new year?
My start to the new year has been quite mixed really. After a very difficult home infusion in mid December, I was back in clinic for infusion at the start of January. This was also a little traumatic. One of the main issues that I have with IVIG, is that my veins are not easily accesible. I have a 'good' vein in my left elbow, but the others can be difficult to get in to. Aside from that, I am always encouraged to take a lot of fluid on board prior to each infusion. On top of over half a litre of fluid in a couple of hours, and I end up in a difficult situation. This caused a mini disaster.
As a have a butterfly needle instead of a canula, Im not really allowed to move my arm in case the metal damages the vein. When I did move to the loo, the butterfly slipped and came out of my arm, leading to the infusion needing to be re-sited. It took each of the infusion nurses two attempts each to re-site the needle, which is a bit of a worry for home infusion. As such the nurses are applyign for funding for a BUPA Homehealthcare nurse to come out to me and supervise the infusions. If experienced nurses have issues siting the needle, my mum will find it a lot harder.
A second in-clinic infusion took place in late January, and this time all went well. However since then, I have been stuck with a terrible virus, and I have to admit I havent felt so rough in a long while. Tiredness is a fairly common symptom of my CVID, but the lethargy I have felt recently has been horrendous. On top of that swollen glands, terrible headaches and, numerous painful mouth ulcers and its been a hard few weeks. Thankfully I seem to be through the worst just in time for a home infusion on Monday. Time to crack on with those resolutions..........
My start to the new year has been quite mixed really. After a very difficult home infusion in mid December, I was back in clinic for infusion at the start of January. This was also a little traumatic. One of the main issues that I have with IVIG, is that my veins are not easily accesible. I have a 'good' vein in my left elbow, but the others can be difficult to get in to. Aside from that, I am always encouraged to take a lot of fluid on board prior to each infusion. On top of over half a litre of fluid in a couple of hours, and I end up in a difficult situation. This caused a mini disaster.
As a have a butterfly needle instead of a canula, Im not really allowed to move my arm in case the metal damages the vein. When I did move to the loo, the butterfly slipped and came out of my arm, leading to the infusion needing to be re-sited. It took each of the infusion nurses two attempts each to re-site the needle, which is a bit of a worry for home infusion. As such the nurses are applyign for funding for a BUPA Homehealthcare nurse to come out to me and supervise the infusions. If experienced nurses have issues siting the needle, my mum will find it a lot harder.
A second in-clinic infusion took place in late January, and this time all went well. However since then, I have been stuck with a terrible virus, and I have to admit I havent felt so rough in a long while. Tiredness is a fairly common symptom of my CVID, but the lethargy I have felt recently has been horrendous. On top of that swollen glands, terrible headaches and, numerous painful mouth ulcers and its been a hard few weeks. Thankfully I seem to be through the worst just in time for a home infusion on Monday. Time to crack on with those resolutions..........
Thursday, 16 September 2010
Exhausted
Well its been a while since I got around to updating this. Now Ive finally got some time, to sit down and update :).
Its been a hectic couple of weeks for me and my CVID and its hard to know where to start really. Im due for infusion next week and Im a little bit nervy after my last infusion experience. In the run up to the infusion, I had been feeling heavily exhausted and very unwell. When I visited the hospital for the infusion, the nurses didnt feel that I was well enough, or indeed strong enough to have my infusion at that time. I was somewhat surprised as I certainly felt well enough, however I will not go against my nurses judgement. The infusion was delayed by 3 days to ensure that my infection markers were not indicating any infection in my system. Although the infection markers were ok, my IGg count had dropped which I dont feel is particularly encouraging.
Last week, I finally got around to getting the ultrasound of my spleen done. My consultant wants to check why I havent shown the expected levels of response. One theory is that there could be clots in the spleen which are absorbing the immunoglobulin, keeping it away from the immune system. From the ultrasound, apparently although my spleen is the correct length, it looks 'bulky'. Im sure I will hear more on that in due course. Next week I have CT scan of my lungs to ensure there is no damage there.
One thing I did get a roasting from my consultant over was the importance of sleep in helping me recover, and apparently I am showing some signs of insomnia. As such I have cut out caffeine after lunch and found that I do sleep ok with that. I just need to try and get a few early nights.
I guess my one bugbear with the IVIG is my slow pace of improvement. After 5 months I still dont feel any real improvement. I know it will take time and I need to be patient, I guess I just hate feeling so drained so often
Its been a hectic couple of weeks for me and my CVID and its hard to know where to start really. Im due for infusion next week and Im a little bit nervy after my last infusion experience. In the run up to the infusion, I had been feeling heavily exhausted and very unwell. When I visited the hospital for the infusion, the nurses didnt feel that I was well enough, or indeed strong enough to have my infusion at that time. I was somewhat surprised as I certainly felt well enough, however I will not go against my nurses judgement. The infusion was delayed by 3 days to ensure that my infection markers were not indicating any infection in my system. Although the infection markers were ok, my IGg count had dropped which I dont feel is particularly encouraging.
Last week, I finally got around to getting the ultrasound of my spleen done. My consultant wants to check why I havent shown the expected levels of response. One theory is that there could be clots in the spleen which are absorbing the immunoglobulin, keeping it away from the immune system. From the ultrasound, apparently although my spleen is the correct length, it looks 'bulky'. Im sure I will hear more on that in due course. Next week I have CT scan of my lungs to ensure there is no damage there.
One thing I did get a roasting from my consultant over was the importance of sleep in helping me recover, and apparently I am showing some signs of insomnia. As such I have cut out caffeine after lunch and found that I do sleep ok with that. I just need to try and get a few early nights.
I guess my one bugbear with the IVIG is my slow pace of improvement. After 5 months I still dont feel any real improvement. I know it will take time and I need to be patient, I guess I just hate feeling so drained so often
Thursday, 15 July 2010
So what is it really like..... Part 1
According to Wikkipedia, the prelevance of CVID worldwide is 1 in 50,000. Well I guess that I have always wanted to feel unique!!
As such people around do often want to know what its like to have something like CVID and what effects it has. I guess the best way to look at it is before treatment and how I am finding this now that I am being treated.
Potentially I could have had my CVID since birth. Although I dont remember being particularly sickly as a child, I do remember having regular migraines and some regular throat and tonsil issues. Many times my tonsils were threatened with removal, only for the infection to go and my tonsils are still with me. Fast forward to the age of 14, and I was diagnosed with Glandular Fever, which I apparently managed to catch again two years later.
I dont remember being particularly ill while I was at sixth form or uni, however from the age of 23 onwards, I remember a number of different illnesses. It started with a nasty chest infection in December 2003. I was coughing horrendously, and burning up. From then on I remember being ill probably more times than I remember being well.
When I was first told that I may have CVID due to my low immunoglobulin counts, I didnt think that was the case, as although I had felt unwell often, I didnt feel as though I'd had many infections (one of the symptoms of CVID is repetitive and chronic infection.). The main sysmptom I remember is a massive level of tiredness. No matter how much sleep I had it would never go and worsen through the week. Coupled with the poor sleep pattern I had that time, I would end up spending most of my weekends sleeping purely as I was drained, it all started to run me down. I was later told by my infusion nurse that the tiredness was actually being caused by my body continually fighting infection. The infections would never really go and would simply come back again.
Many times I had to miss out on social events, as I just didnt feel that I could go. I sure that I lost so many friends purely as I felt unable to socialise due to the level of drainedness that I had. It was a vicious circle, as the more drianed I felt, the more it seemed to get to me.
For me though, the single worst symptom are the completely random aches and pains that seem to accompany CVID. There is nothing weirder than randomly developing an ache in the middle of my bicep. Any one who knows me well enough, knows I love my even football, but even that became a chore at times. My legs and feet would ache so much and, I would be so drained that by the end of the game I felt I could hardly walk. I felt so much older then my 29 years.
I was told that the treatment would ease those sysmptoms over time. I guess we will just have to see...........
As such people around do often want to know what its like to have something like CVID and what effects it has. I guess the best way to look at it is before treatment and how I am finding this now that I am being treated.
Potentially I could have had my CVID since birth. Although I dont remember being particularly sickly as a child, I do remember having regular migraines and some regular throat and tonsil issues. Many times my tonsils were threatened with removal, only for the infection to go and my tonsils are still with me. Fast forward to the age of 14, and I was diagnosed with Glandular Fever, which I apparently managed to catch again two years later.
I dont remember being particularly ill while I was at sixth form or uni, however from the age of 23 onwards, I remember a number of different illnesses. It started with a nasty chest infection in December 2003. I was coughing horrendously, and burning up. From then on I remember being ill probably more times than I remember being well.
When I was first told that I may have CVID due to my low immunoglobulin counts, I didnt think that was the case, as although I had felt unwell often, I didnt feel as though I'd had many infections (one of the symptoms of CVID is repetitive and chronic infection.). The main sysmptom I remember is a massive level of tiredness. No matter how much sleep I had it would never go and worsen through the week. Coupled with the poor sleep pattern I had that time, I would end up spending most of my weekends sleeping purely as I was drained, it all started to run me down. I was later told by my infusion nurse that the tiredness was actually being caused by my body continually fighting infection. The infections would never really go and would simply come back again.
Many times I had to miss out on social events, as I just didnt feel that I could go. I sure that I lost so many friends purely as I felt unable to socialise due to the level of drainedness that I had. It was a vicious circle, as the more drianed I felt, the more it seemed to get to me.
For me though, the single worst symptom are the completely random aches and pains that seem to accompany CVID. There is nothing weirder than randomly developing an ache in the middle of my bicep. Any one who knows me well enough, knows I love my even football, but even that became a chore at times. My legs and feet would ache so much and, I would be so drained that by the end of the game I felt I could hardly walk. I felt so much older then my 29 years.
I was told that the treatment would ease those sysmptoms over time. I guess we will just have to see...........
Tuesday, 22 June 2010
To IVIG or not to IVIG?
Following the diagnosis of CVID, the next step was to decide the methodology of treatment.
My diagnosis was confirmed in late March, after an attempt to stimulate my immune system using vaccinations had failed drastically. On top of that, despite daily antibiotic, I was still picking up infections. If anything my immunoglobulins had dropped even further. The appointment I thought would only last half an hour or so turned into several hours.
You kind of get a feeling things are not great when your doctor keeps re-checking your notes. Even though deep down I knew what was coming it was still a shock when the full scale of the issue was laid out to me. Ever since my low immunoglobulin counts had been discovered access to the internet and wikkipedia gave me an idea what to expect.
The only way for my condition to be controlled from this point was to be given replacement antibodies. However there were two possible methods - a three weekly IVIG drip, or a weekly 'sub-cut' method where a pump delivers the fluid into sites on the abodmen.Having only started a new job a few weeks earlier I was immediately drawn to the three weekly option (the sub-cut method required a hospital visit every week for at least 10 weeks). As usual things are not that simple. Although my counts being so leant towards the three option (a larger amount to boost me immeadiately), my veins are moveable - something I would later painfully discover.
The doctor went through the whole process of anti-body harvesting from Euopean and American donors. I was then shown where the infusion takes place before my infusion nurse checked my understanding with a series of questions, which would later be repeated when I gave my consent to treatment some three weeks later.
One of the lighter moments in the run up to the start of my now life-long treatment, was having to have my veins examined!! Having a nurse gently rubbing your arm and hand is a stranegly pleasant feeling guys!! ;). However it is important for the nurse to establish the quality of the veins as they have to stand up to long term useage. However Im intrigued to find out what vein exercises are!!!
My diagnosis was confirmed in late March, after an attempt to stimulate my immune system using vaccinations had failed drastically. On top of that, despite daily antibiotic, I was still picking up infections. If anything my immunoglobulins had dropped even further. The appointment I thought would only last half an hour or so turned into several hours.
You kind of get a feeling things are not great when your doctor keeps re-checking your notes. Even though deep down I knew what was coming it was still a shock when the full scale of the issue was laid out to me. Ever since my low immunoglobulin counts had been discovered access to the internet and wikkipedia gave me an idea what to expect.
The only way for my condition to be controlled from this point was to be given replacement antibodies. However there were two possible methods - a three weekly IVIG drip, or a weekly 'sub-cut' method where a pump delivers the fluid into sites on the abodmen.Having only started a new job a few weeks earlier I was immediately drawn to the three weekly option (the sub-cut method required a hospital visit every week for at least 10 weeks). As usual things are not that simple. Although my counts being so leant towards the three option (a larger amount to boost me immeadiately), my veins are moveable - something I would later painfully discover.
The doctor went through the whole process of anti-body harvesting from Euopean and American donors. I was then shown where the infusion takes place before my infusion nurse checked my understanding with a series of questions, which would later be repeated when I gave my consent to treatment some three weeks later.
One of the lighter moments in the run up to the start of my now life-long treatment, was having to have my veins examined!! Having a nurse gently rubbing your arm and hand is a stranegly pleasant feeling guys!! ;). However it is important for the nurse to establish the quality of the veins as they have to stand up to long term useage. However Im intrigued to find out what vein exercises are!!!
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