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

Life After TX 19-04-2010

Hi Everyone

Well I am over that nasty blood infection now and feeling a lot better, I had my Picc Line taken out and have also finished my course of antibiotic capsules. Last week I had another blood test taken for the Liver Clinic and will get the results soon, hopefully my blood levels will be starting to come back to normal. The days are much better now with some energy to do a lot more things and I am also enjoying getting back to my old self, touch wood LOL, but seriously it has been a long time since I have felt this way and I enjoy it immensely.

One thing about finishing the Tx is that you really have to be careful with your low Resistance to illness as I have found out first hand, with winter approaching and the Flu season with it I will be getting a Flu Shot shortly just in case as my body is still very weak in this area. I spoke to a friend the other night and he told me he has to re-treat for his HepC but will be having a years break in between so as to rest his body which is an excellent idea and a safe one.

The rigors of Tx takes a heavy toll on our mind and bodies and I definitely know that we can only take so much of this brutal therapy, I know that the side effects affect everyone differently and also the level, but as far as I am concerned after doing 48 weeks of it, either way it's no walk in the park and a long journey, but one that is well worth the hardships. If I had to retreat I would do it again in the understanding that is is the only key to ridding us of the killer within.

Be Good All and Keep Strong

John

Life After TX 08-04-2010

Hi again

Well the last few weeks I have had some serious illness, I somehow picked a blood infection which turned out to be E-Coli. It started out what Doctors thought was UTI but was much more sinister than that, the antibiotics were not combating this mystery infection and I soon became very ill indeed, which led to my hospitalisation for ten days. After being admitted in our local town hospital the doctor gave me routine blood tests and cultures and it was found that I had contracted an evil bug in my blood stream. Whilst there I had 5 bags of fluids and antibiotics of a different type to see if they had a better effect. They didn't have all the test equipment necessary on hand so I was transported by ambulance 200klms away to another larger hospital to be treated, it seemed like it took an eternity to get there and be put into the system.

On being admitted and checked over to see if it would be a surgical team or a medical team that might be required, I was put into a ward and further investigation followed. During my stay I had Ultrasound and a MRI to see what was going on inside, the Ultrasound showed that my Spline, Liver,Prostate were swollen and my Gallbladder was slightly under size, The Doctors decided that I should have a Picc Line put in which is a tube that is inserted into a vein in the upper arm and pushed along till it reached a larger vein near the Heart, which was an experience in it self, after that had been inserted they could inject large amounts of heavy duty antibiotics three times a day, even though I am at home now I still have to have this done at the hospital at 6-00am, 2-00pm and 10pm. I also have blood thinning needles into my abdomen in the mornings.

I don't know whether being so run down after my Interferon treatment or whether my immune system just couldn't cope but either way this latest bit of fun really knocked me around I can tell you that and hopefully I have this beat. It seems ironic that I have weathered the HepC tx and now have another battle to fight, ah well cant be all bad after being in the hospital and seeing some really seriously ill people, I am so thankful that I am not like that, better days ahead for me and now I am going to start to get my life back together and look ahead to some good times.....

I used to have as my signature on a profile once that said......

" Whats quicker then the blink of an eye...... How quick your life can change..."

Take Care All and grasp every day as a bonus.....

John

Life after TX 24-03-10

Hello All

Tonight I would like to talk about the role of Anti-Depressants with Tx, in my case i was lucky to be on them well prior to Tx and I feel that helped me quite a lot. I have often read on many forums about people who are participating in having Tx for the first time don't seem to take the use of the medications as recommended, in many cases of following peoples journeys these forums you can clearly see that these are needed as times goes on with the therapy. Which in turn has caused much unwanted mental and emotional stress, then when the people finally come to the fact that they need this medication, it is another four to six weeks for it to take effect. Personally I found that these meds helped dramatically compared to other people who didn't take any and at times the Tx can even need extra medication in this area as in my case and also others.

Another good practise I found was to keep one's sense of humor as much as you can while treating, calling other people on Tx and keeping in touch and discussing the pro's and con's of the therapy with each other and also the mere fact of contact itself helps with isolation that also follows the depression and anxiety. To me support of others is like the rungs of a ladder where we form to help each other combat these feelings, take time out to reflect and don't take to much on board while in these strange moods. Support, Friendship and Openness are the keys to making an almost insurmountable task achievable, it's good to see the professionals and doctors for help but as far as I am concerned all the the studies and training cant take the place of talking to or doing the Tx and all that goes with it better then someone who has done it or doing it.

I have had my medication changed now for my depression and it's only early days yet of seeing if it is of any benefit, I sort the different meds through my Doctor and explained to her how I was feeling and that coping was not one of my strong points since finishing Tx and I needed help with this. The trouble is that because I am cirrhotic it narrows down the strengths and daily frequency in which I can have these meds, sort of dammed if you do and dammed if you don't scenario, all I can do is keep positive and not shut myself away from everybody and everything and face these issues head on. Lucky I have my family, friends and great acquaintances to help me along this road to recovery......

Take Care

John

Life after TX 16-03-10

Hi Everyone

Well another couple of weeks further into Post Tx and still I have very mixed emotions and feelings going on, I remember hearing of others that have been affected in similar ways and at the time kept wondering what they really meant. It is a strange sensation, almost like a life changing event, the direction of where and how things are perceived is now very different and makes one question one's life direction. I have heard also of ongoing affects even quite some time after Tx and no sign of things improving, don't get me wrong here, this is not a doom and gloom scenario but more fact then fiction.

Is it possible with the effects of long term medication that some of the effects of this very potent drug can have permanent lasting effects that do change mannerism's, outlooks and temperaments of the patience who have been exposed to these treatments. I for one do put some credence into this as I feel it has changed me in all of those areas, finding myself questioning these issues often.

How do others perceive us after the treatment, do they expect that we will bounce back to our former selves or will they recognise the difficulties and changes that are upon us now, will they understand. At first I thought I just had to combat treatment and that would be it but I have since found out that is not the case, now we have to confront the remnant side effects from enduring this powerful medication and the ongoing symptoms it carries with it.

Who will understand ? who would have thought about this transition period ? I myself have found that it can be a very lonely place to be and a fragile place at times even with support and I have come to the conclusion that the outcome of curing a disease can bring with it unknown territory of isolation in many respects.

I have sometimes had expectations that cant be met and before would have brushed this off but now find it more difficult to come to terms with. This is not the raving of some depressed person but rather that of someone who is finally starting to confront things that may have been there for sometime and it took the brutal learning curve of Interferon to bring them to the front.....

Life is good, Life is what you make it, but life is empty if you can't be yourself....

Take Care and Be Well

John

Life After Tx 02-03-10

Hi Everyone

Well its been a while since I last updated my blog and a lot of things have been happening, I went to my Liver clinic in February to see my Specialist and he was happy with my result with the HepC and told me that when my bloods get back to normal, they will start treating me for my HepB which will take 3 to 5 years of taking medication. This medication will be much more kinder then the Hepc Tx and only involves a tablet once a day, so will be much easier and nearly no sides with it.

My weight and my blood levels are still very low and I still get very tired and run out of energy quickly, on the psychological front I still find focusing on tasks and concentration difficult and at times the depression sneaks back, but I must admit things are getting better. Some days I seem as if I am on top of the world and others just cant get started on anything, I do know one thing that the Tx has done for me other then curing my Hepc, is that it has also changed me. I no longer am the same person, whether that's a good thing or bad, only time will tell, but I am definitely different to how I was.

Where to from here, well, I really don't know, I feel I have to do something but I don't know quite what it is, that makes a lot of sense doesn't it, if you get what I mean.

Well till next entry I hope all are well and take care.......

John

Day 342 to 349

Hello again

Well this last week has been very mixed indeed as it turned out, it has been 2 weeks now since I have finished Tx and each day brings some mystery and different outcomes with them. My mind is starting to clear a little now and my concentration is improving, though I still have moments of fog and confusion but that will settle I think as time goes on. Went to my GP appointment and only got some of my EOT bloods back, readings of WCC, HB, Neuts and Platelets are still quite low and they too should improve as time goes on.

This week I also got the results of 2 PCR tests that I had done and the HCV is Undetectable and the HBV has not changed and my status is still positive, Oh well one out two sounds good to me and all the hard yards of Tx have paid off. As the days progress after Tx it makes one feel very lost at times as you no longer have the routine of treatment and it sort of makes me feel a bit empty, never thought I would feel like this, strange feeling really. I am still very weak and tired a lot and still have to have my daily naps which help me through in combating remnant Sx.

Keep Well

John