Life after Tx - 1-3-2011

Hi Everyone

Just updating my progress on the re treatment front, I have had my pre Tx bloods done and have an appointment on the 9th March with the Liver clinic in Brisbane and hopefully will be picking up my meds for treatment. I have been having weekly venesections for my Iron overload and the high Ferritin levels, these procedures are having a good effect on my ferritin levels and have dropped significantly considering they started off at 2800 ish and now at my last test was down to mid 400. Tomorrow I will get some more test results for this as well as having a blood letting, all I need now is some leeches to finish it off.... LOL....

Will update on return from my appointment and hopefully will have a starting time to report....

Take Care
John

Life after Tx - 3-12-2010

Hi All


Well Wed 1st Dec I went down to Brisbane for my Specialist appointment re my HepB and HepC, the news I received was good in the fact that my VL for my HepB had dropped quite a lot and the medication Tenofovir is working. After researching information about upcoming new HepC Tx drugs and looking at my current health status with my liver and also my age at present and my age at the time the new drugs arrive I have decided to approach them again about re treating again now.

I have made changes to my approach this time in regards to amending conditions of my lifestyle and current health problems such as my diabetes which I am on a care plan with medication and a Dietitian, I have given up smoking and my HepB is at a much lower VL now with current medication, bloods are good and my mental outlook is very strong and positive so overall a much better position then last time.

I also mentioned a different plan of attack to the Tx in the form of pre dosing and extra shots of INF at the start of Tx and the Specialists both agreed to this and also I questioned them about rescue drugs if required and they said yes they would be available to me as required with no problems. My push to be re-treated was bought about by the passing of my Mother in laws partner recently with Liver Cancer and seeing him days before his death really bought home to me as well as other factors like Cirrhosis and being co-infected the need to act now whether the chances of SVR being slim or not. I would rather take my chances trying to beat these virus's then to do nothing treatment wise waiting for new meds that may or may not help me in x amount of years time while meanwhile my health deteriorates waiting to a stage where its too late.

So I will be going back in February 2011 for another appointment and so far looks very promising for another go at Tx....

John

Life After TX 13-9-10

Hi

Well my appointment date is fast approaching which will be in two days time from writing this and I must say it can't come quick enough for me, in saying that I am experiencing many different feelings on this matter, everything from frustration, nervousness and excitement. I suppose all will be revealed at this appointment and will have to abide by its outcome whether it be for me or against me. Questions I have to myself are will it work this time and am I mentally and physically strong enough for it all, can my Family and loved ones put up with me once again whilst on treatment, many unknown quantities here and ones that I confront nearly every day to myself. How will I be this time, will it be similar to before or will it be better or worse, who knows, all I can do if offered another round at this virus from hell is to give it my best once again.

Will this treatment affect friends also as my moods and temperaments were not exactly friendly to say the least last time and I am concerned about hurting the one's I have closest, of course if I was to go it alone a lot of them would be spared this and it maybe the way to go, I just don't know. Family members also do not get an easy time either and what of them to put through the ringer again, they say they don't mind, but is it fair on them also, these are just some of the issues I have been mulling over.

On the other hand support and friendship and having people to confide in that understand what I am going through is a god send and makes even an impossible journey achievable. Doing the treatment  means a lot of hard slogging but it would be so nice just to feel well again without this virus that has plagued me for such along time and stolen precious time from me and my family and friends as well as left me with some severe liver damage and also what is to come from that. So I am more fore than against and would do this Tx in an instant if offered to me, just to have a better quality of life and become a person that many haven't seen for a long time.

Sorry for waffling on this post, but I have all ways told things as they really are and that my friends is me.

All the Best

John

Life After TX 3-9-10

Hello

Well I am getting over my flare up again and finally getting back on track which is very welcome, the days here are starting to warm up and has made a nice change to be out in the sun. I have been reading a lot lately about the benefits of Vitamin D and how it helps with Tx and post Tx, the responses and studies I have looked into show a positive indication when used. Also I have noticed quite a mixed response for people after Tx in the order of how they are holding up, many people have cleared the virus and have returned  to there state before Tx and others have come out of it with many benefits to there health that they never had before, which is great, others have been left with ongoing symptoms of Tx and also some new and weird problems even after a considerable amount of time. I have realized that we are all unique and each persons journey is different for them, not to say people don't share a lot of the common symptoms of treatment as we all do in one form or the other.

In my case and I can only speak for myself  is that I have been left with some of the random and nuisance side effects, I also know that's it's only been 7 odd months since EOT and that these Sx should dissipate, but they haven't and it has changed my life in the way which I function now. Some people will say it's early days yet but I have been studying many peoples admissions of what they are experiencing 12 to 18 months EOT and its more widespread then what we actually realize. I am not whinging here, its just as much fact as it is with the people who have been terrific after treatment and have a whole new lease on life.

How does one handle these situations, well I try and  do as much as I can for these problems that I share with many others by changing the way I do the things that I have problems with, like with concentration I have my model railroad to build, with my aches and pains I try to get outside and do small chores that need doing when my body permits, the moods I experience are treated by removing myself from any antagonism and do some relaxation techniques and I also have a small vegetable garden to look after, all of the things that I have mentioned were not an issue before Tx and hopefully not be enhanced after my next upcoming treatment.

These changes are what has happened to me and does no way mean that it will happen to anyone contemplating treatment or re treatment, it's just me stating how I went and what has happened so far.
Still with these niggly things happening I would not advise anyone against treatment because the benefits are truly worth it......

Till next time.... Be well

John

Life After TX 20-08-10

Hello again

Well it's been nearly 2 months since I have updated my blog and have some news to report, my next Liver Clinic appointment will be on the 15th September this year to find out where to from here. I am glad that it is not far off as I have been very ill lately and have had some pretty major Flare ups of my Virus's which at times has left me bed ridden, just like the serious ones I had pre Tx including much swelling from inflammation and absolutely no energy and extreme aches and pains. I fight these episodes the best I can and I am no quitter when it comes to battles, but at times I feel I am losing the fight as these flare ups are increasing in frequency and strength.

Hopefully the Liver Specialist will sort something out and also find out from him about my re treatment for these nasty evil viruses. Trying to get my sugar levels under control and also get as healthy as I can for the next round of Tx but with these flare ups lately the health outlook may take a bit longer. Also lately I have found that some of my fellow Tx'ers have relapsed as well so they too are looking forward to another round of virus fighting. I have also gone back to the forums again which helps me and many others and puts the perspective on treatment and friendship for everyone.

Well that's about all for now and still trying to move forward, keep well everybody...
John

Life After TX 26-06-10

Hi All

Well I have been quite unwell recently as you know and this prompted me to contact the liver clinic to talk to them and see if maybe my liver was playing up again. They told me to get my PCR's done for my HepC and HepB as well as many other tests that I was supposed to have in July for my six months after Tx.
About a week later the liver clinic rang me back and said they had some bad news for me, which was that the HepC had returned and that I have relapsed and the HepB viral load had gone up as well. After hearing this I was quite numb indeed and felt shattered, this was why I had been feeling unwell and I supposed deep down inside I knew something was wrong but didn't want to face the thought that it may be back.

I will be going back to clinic in September for a meeting with the Specialist and others and will find out more then and the nurse said that they will retreat possibly early in new year, so till then I will have to prepare again
for another round.......

John

Life After TX 26-05-10

Hi all

Well it's been a while since I last updated my blog and quite a lot has happened in my life over that time span, firstly hearing from another dear friend and fellow treatment person that after 48 weeks of Tx that the virus was once again detectable which was quite a shock indeed for me and devastating for her. My heart went out to her and I could understand the disappointment she had to come grips with and also the daunting fact that she will be retreating again at a later time to come with newer meds involved, I wish her the utmost in her time of despair and that the next treatment will have a much better outcome. The next thing that has happened was that I came across a head on highway smash near my home just shortly after it happened only to find out that I knew the two parties involved, they were elderly neighbours in our street which died

instantly and also a friend who survived with injuries. On seeing this horrible accident and being there and not being able to do anything was very upsetting and also knowing that I was talking to them the day before they perished, this has affected me very much and at times all I think about is how quick things can change and how fragile our lives are.

On the post Tx side of things I have had very mixed results and still have many days of uneasy feelings both physical and mentally and find myself needing different things in my life now. I am also experiencing overwhelming tiredness now and sleep quite a lot, some days I am very motivated and others I just cant seem to get out of my own way. Another step forward to recovery or is it, sometimes and this frightens me some what that the changes I experienced whilst during and also after Tx are becoming my day to day life now, as if I am wandering and looking for something, maybe an answer, I don't really know, which doesn't help much. This at times causes much upheaval for those around me in the family and also visitors as well, it also

is very frustrating that when we have visitors they say that I look well and all is good now that treatment is over, well I may look ok on the outside but in myself I am far from it at this point and no one other then my closest friends know how I really am behind this facade.....

Well till next entry......

John