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Hello Everyones

Well just surpassed my second anniversary with my new kidney and everything is great!!  Attended a Transplant symposium hosted by USC University Hospital and Chilren's Hospital of Los Angeles.  Very interesting and got to meet many others with transplants.  We need more of these type of get togethers.  Helps us heal and realize that many others share our stories, heartbreak, triumph, etc.   It's like a TransplantFriends but in person.  Does anyone else share the same thoughts??  Hope all is well out there.
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Hi everyone,
I am now almost 14 months out of transplant and this June I am doing a 100 mile bike ride around Lake Tahoe! Please check out my personal web page ( here )to see my story, progress, and why I am doing this ride!
Thanks!
Allie
http://pages.teamintraining.org/sf/ambbr11/aweese
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waiting for husband to be placed on the list

My husband has just got out of the hospital, He was running a fever of 104 and they said he had a urineary traack infection and his throid was messed up. We went to Birmingham last week and the doctor said his meld score has jumped up to a 20. They want him to be seen by the surgeon that does the transplants. i just sit and wonder , are they going to put him on the list now. He has to have oxgen. He has trouble breathing. I wonder how much time we have until he is put on the list.

kay barley

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On September 26, 2010, the UCLA Liver Transplant team performed their 5,000th liver transplantation.  This is the most recent achievement of a 26-year journey that has given new life to literally thousands of patients.  The first liver transplant at UCLA was performed on February 1st, 1984. 

And I am so proud and blesssed to be one of those 5,000 transplant recipients and survivors by Dr. Busutill. Eveny day is a breathtakingly new life.

Thanks to you ALL.

Learn more

 

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Slow But Sure, The Walk Continues!

     Dispite the many breaks I've had to take, the 100 mile walk continues.  I made the 50 mile mark just before Christmas break.  I began walking again after the new year, and am currently at the 73.5 mile walk.  My new heart is functioning perfectly, but the medications are causing a few complications.  These complications are more worrisome to my transplant team than they are to me, and I assume this is because my ignorance is bliss.  I feel great most of the time, but the few times I have problems seem to end in a hospital stay. Frustrating to say in the least! I realize I have been given a precious gift, and try very hard to OBEY all orders and suggestions.  As most of you can relate to, after sitting around waiting for death to tap me on the shoulder, I am now ready to get going and live life!  But I was told I could have my life back in a year, so I still owe them 6 months.

     I am currently walking through Edgewater, Florida.  Once more I'm in the hospital for a day or two of tweaking meds, then, thankfully, I'll be released to start walking again. Only 26.5 miles to go, and I am so excited to complete this pledge!  So close to the finish line!  Being in the hospital hasn't stopped my awareness efforts.  Ever the one attempting to find an organ donor wannabe, I talked with a nurse last night who signed up on the organ donor website.  Hooray!  She promised to pass the web address on.

     I hope this blog finds you happy and feeling well.  I hope your dreams are coming true.  I hope life is glorious and improving daily.  I hope we can all work together to make tihs happen for all of us!

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About my pics!

Thanks for saying hello! I am planning on telling everyone about my transplant soon. I wanted to reply to those who commented on my photo's and I think that this is where I can do that in more detail. Unfortunately the picture of me in the pool is NOT in my backyard. That photo was taken of me when I was in the Turks and Caicos this past October. My brother, mother and I had a great 12 day vacation there. It was heavenly because I love the tropics and the weather was great. The water was SO beautiful. Like ice blue bathwater! It was especially nice because all the salt enabled me to float easily and therefore not tire me out too quickly. Also, because I was at sea level I did not have to be so completely dependent on my O2. I live in Colorado which is fairly high in altitude so my o2 sats are not as good as if I was at sea level. The picture of the mountains is where I live. Also, this past summer I went to Telluride to attend the Bluegrass festivale (I love music) and there were a number of monks attending who were performing in town. They were promoting their monestary by performing chants, educating people about Tibet, making sand mandalas and such. I enjoy learning about spirituality so got a photo snapped with them. I do have to say, it was REALLY exhausting going to the festivale though because there were so many people but mostly because it really was much too high of an altitude for me. Looks like I am going to have to stay out of the mountains from now on. At least the beach is okay though. I think l'd definately cry if I couldn't go to the beach and get all sandy!
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Well... It just aint been happening for me at the moment folks, which is damn frustrating!

 

If you haven't already picked it up via twitter or facebook, I didn't get to have my biopsy but just a rather expensive and annoyingly frustrating kind of a week.

 

As I said on my vid, I was due to go in on Tuesday - Fantastic. So I got up on Tuesday, pumped up and ready to go, dashed around a bit because on that morning I had an interview with a recruitment agency. That went well and as soon as I came out I thought, seeing as I was in town I would do a little retail therapy and hit the shops. I wanted to get myself a wireless internet 'dongle' so that I could keep in touch with the world whilst I was in hospital.

Many of you who have spent time in Hospital will know what I'm talking about when I say I feel so cut-off when I go in to these places, especially for something which you feel is routine or seemingly straight forward and then suddenly turns into a marathon 'staycation'.

If also like me, you use St Jimmy's specialist liver unit, you'll know there are no TV's on the wards. Now I know the phone signal is patchy inside the Hospital but, being a Vodafone customer, I have found that generally speaking I can get a signal. So I headed straight for the Vodafone store and re-emerged 20 minutes later with said item and £20 quid lighter, excellent. Now all I needed was to find was a 'vanilla slice', a cappuccino to go and my retail fix was done, cool!

 

Ok, once I got home I decided I would put an update on my blog. As my typing is still painfully slow even after all these years of using a keyboard, I decided the quickest way (and as Mandy and the kids were at work and school) was to use Mandy’s' laptop which has a webcam and post a video diary update. (http://youtu.be/vviKROJXEa8)

 

Ok, so after that I just had to load my 'dongle', pack and soon as we'd had tea and got the kids to bed at 7pm, I would get gone.

The reason for going in the evening before my biopsy was scheduled was to get me into a bed, get some blood taken out of me for tests, put a 'venflon' put in and then make sure I was 'nil by mouth' from midnight onwards.

 

Great, so I arrived and everything was going 'swimmingly' until a doctor came round and after 'blowing' a vein in the back of my left hand (not her fault, it's easily done!), we got onto the subject of medications and what drugs I was prescribed. As soon as I told her that I was on Warfarin for a clinical trial, we both realised that having a biopsy was not going to be an option!

I kick myself as I should've realised that taking a drug that thins your blood would probably help you bleed to death when they started trying to 'spike' you to take a peace of your liver away for examination - Warfarin stops your blood from 'clotting'! Ouch!

Apparently I should’ve had a letter telling me to stop taking it five days prior to attending. I can only assume that as the study is being carried out by the Imperial College, London and not St James Hospital that it was an oversight and didn’t get sent. This was reaffirmed by the doctor who had no knowledge of my being on the study - bugger.

 

So after that I was told my bloods would be checked and then could go home in the morning once a new biopsy had been booked. Well, at least I got to check that my dongle worked OK! And I spent the next few hours chatting to guy in the next bed who had recently been 'transplanted' and consequently was still on high doses of meds - he babbled intensely and will probably have no recollection of ever meeting me but I hope I reassured him at the time that he was gonna be OK and was in safe hands. I know his situation only too well!

 

Next morning I was given a bowl of cornflakes and a cup of insipid tea and informed that my 'bloods' were fine and a date set for the following week to do it all over again! After hanging around to get my venflon taken out, I was released and went down to the main reception. As I'd driven myself in and parked my car in the hospitals' multi storey, I found the pay-parking machine and popped my car parking card in - £15.90!!! Yeas, I'll say that again, 15 bloody ponds, 90! To park overnight for something that didn't happen!!! Bloody Hell, I won't be doing that again.

 

So after running around the hospital to find a cash-point that worked before the price went up any further, I grabbed a Cappuccino to go to try and get rid of the very bitter taste in my mouth.

 

So that was last week in a nutshell. I was hoping to get the biopsy out of the way so I could try and make some decisions on moving forward. So many questions at the mo and I can feel the clock ticking away in the background all the while, bloody hell, it's like banging your head against a brick wall sometimes. This damn thing keeps stopping me every time I get started. Ho-Hum, we move on. 

 

I did get some good news; both agencies I had signed on with came back to me with some possibilities of interviews. One fairly well paid but in London (which I'm not opposed to) and one not so but staying here (which is also good). Now I just need biopsy results so I can make a decision on what's best to do!!!

 

Watch this space, we'll try again this week - I go back in on Tuesday 2nd.

 

Take care everyone... Ian
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A Hilly Road Ahead

01/18/2011-A Hilly Road Ahead
The morning started off waking up at 7:00 am-I have not woken up at that time for quite a while and it was pretty difficult to do, but I am trying to make new habits and going to bed earlier and waking up earlier is one of them.
So by 9:30 am-I met my Auntie and Uncle (who are brother and sister to my mom) in the parking lot of a closed down Mervyn's) with my "Auntie" Meena to go for my first real (non trail) road bike ride. It was good-mildly hilly, but not awful. I did not have to stop on any hills and walk up them-and I did not have to shift to first gear at any of them. It was a total of 11 miles, which was pretty good for my first day out. We were going to make it a little longer, but the next signal is REALLY busy, so we turned around a signal early and that took off about a mile or maybe 2.
Some of those hills looked so hard to do and that I could not do them, but once I was on them, I could not stop and just got through them. I sort of surprised myself that I did so many, and such steep hills. The other day I tried to do one hill and I could not do it. I think it has a lot to do with warming up my heart. During surgery the nerves to my heart were cut so I have no autonomic nervous system (ANS) the system which tells you to fight or flight. So this means I have to warm up, this can take a good 5 minutes or more. I think it also helped that my Auntie was there and she would not take it if I walked up the hill.
So I have a new exciting work out schedule-I am training-which is a total surprise, but I will tell you all later. It is mostly an exciting because it is with family, and possibly with one of my best friends!
So-to the medical stuff-at first I typed studd-I wish there was a medical studd-preferably a Dr., but I would take a RN.
So my Immune Cell Function Test (this shows how well I am immunosuppressed, it is bad to be to under suppressed-you will always get sick (like with colds) and are more prone to cancer and other things) or over suppressed-your body will be fighting off the organ) from a few weeks ago came back not good, and they gave me the choice to either up my Myfortic or my Gengraf (I was smart and choose the Gengraf) so the doctor upped my Gengraf a very little bit (it has bad side effects (I choose Myfortic over Gengraf because I think Myfortic makes me feel worse than Gengraf and I don't think I could tolerate anymore Myfortic). So a week later I took the test again and it ends up that I was the smart one and choose the right drug because after taking a break from the Myfortic in December (to go on Rappamune to see if that would help with the nausea and end the chronic rejection-which it did not-it made me sicker because it depleted my potassium and magnesium) my drug level test showed that my body is not absorbing my Myfortic (which is pretty serious-since I tapered off prednisone and was off of it-so I was only on 1 anti-rejection drug, all transplant centers require 2 drugs, some 3). Actually the nurse said either you arn't taking myfortic or your body isn't absorbing it, and I immediately started promising her that I take it ever day as prescribed. So we decided that I am not absorbing it. So I am running out of anti-rejection drugs that work. I got them to give me the name brand of cellcept-I have to make sure that I only have to pay my small copay and not a gillion dollars because I can not take the generic-I thought it was going to kill me.
Anti-rejection meds that work: gengraf, name brand cellcept, rapamune (but would be a last resort)
Anti-rejection meds that don't work=prograft (can't see when I take this), generic cellcept, myfortic
And this is all kaiser is giving out anymore, I have heard of neoral, and Imuran, but Kaiser did not offer it to me. So let's all pray that my ICF will get better (and I will still feel ok) with the cellcept (I haven't taken it in a year).
On a funny side note-I called the transplant coordinator at 4 because I knew my lab results should be back by then, but she still had not talked to the Dr. about them, so she had to call me back. Well I was out running errands and I though it was going to just be a few minutes more, so I waited in the parking lot....for 40 minutes. And then I finally left. And of course 5 minutes later she called me and told me about the med change and wanted me to run out and get the new meds. In my head I though: "So, basically I have only been taking 1 anti-rejection medication for a month, what is one more day, I will go out tomorrow after rush hour,".
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Pump Head

01/09/2011 Pump Head
So I guess I have been in a writing mood lately because I think this is the third day in a row that I have written, usually I start out reading friends blogs and commenting, but lately I have been riding a lot-and when I ride I get lots of deep thoughts and this is sort of the therapy.
So from the heart transplant surgery I got developed this condition (that will go away over time) called pump head-that's it's real name-you can look it up on wikipedia, isn't it such a vulgar name? Basically what it is, is memory loss-of different kinds (short and long term) caused by the surgery-when I was on the heart lung machine. There are many theories what actually goes wrong with the pump, one of the things is that your red blood cells are crushed when they go through the pump and are ruined-but there are many other theories.
Anyways-I am talking about this for a reason. For awhile I have noticed that it is so weird the things I actually am remembering/remember. I have forgotten many things from my long term memory, it somewhat feels like I have a slight amnesia-I know the basic things like my name, family, etc. But some things that I expect myself to remember I am not remembering. They kind of catch me off guard because I just don't expect it and I am always surprised.
I have gone to church for my whole life and this morning we were singing songs in church that I have sang my whole life, but I could not remember the words, I had to read them from the screen. It was it kind of made me all the sudden evaluate my life and what I really value. I am having no problem telling people about medical crap-sorry, but I can real off a whole load of stuff, it took me 2 days to remember 20 medications I had never heard of (the dosage, why I took them, and when I took them, etc.) (and I am not just talking about knowing medications-I am a nursing student so just knowing about general stuff going on) but I totally am forgetting verses that I have always known-I just draw a blank.
I know it is important to know about my health, but it made me think that I also need to put a lot more time in reading the word. It is so weird how it took this pump head to figure this out.
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This is the stuff they don't tell you about

02/08/2011 This is the stuff they don't tell you about!
So I was watching this cheezy movie about heart transplant patients; yes I must watch and read all books about heart transplants, fiction or non-fiction to either learn more or to see how close they really capture what it is like to have a heart transplant.
After one of the characters got their heart transplant, they were speaking to a fellow heart transplantee about just how great they felt-"You know, the stuff they don't tell you about". I have been thinking about writing this for an hour now, and now I can't put it into words, but after my great night I can totally relate to this character.
The stuff that they did not tell me about was how all the sudden I would be more out going and willing to try more things. I have done more things with friends, gone out with friends of friends, and tonight I went to a friends work party as her "date". I think in a way the transplant has given me some sort of confidence because I would have never done these things before.
The night was amazing! I got to meet some really cool people, a Chief or Surgery for UCSF, SF Judge, and many Lawyers, and some guy tried to pick up on me-this was the first time since transplant (I inadvertently covered my scar with a scarf-people ALWAYS stare at my scare when I talk to them- so I don't know if that made me more approachable). but I turned him down-he smoked and had a tattoo on his neck :(. I am so glad I went, it was just such a cool adventure.
Today was Katies winter ball and I woke up early (10 am) and ran out to the craft store and bought peacock feathers and made her a headpiece. I think it actually looks really cool and really good. It really got my creative juices flowing in another way. I love how lately I have been back into doing art-for fun. I get inspirations from watching movies or just looking at materials I think of something amazing I would like to make.
I love Katies dress that we picked out about 5 days before the dance. I will have to post pictures later. Last year she was very formal, this year she was very fun.
I got to do her hair fun, and touch-up her highlights which turned out amazing looking-he hair was looking to blond.
And finally, Jackie always does her make-up, but she is away, so she asked me to do it. And I though I could do a fine job, but that it would just look like everyday make-up since that is the sort of make-up that I do, but then my creative juices started flowing and I blended the colors of her eye shadows to make it look like a peacock-to keep with the theme. Even my grandmother and mom liked it! Their only complaint-and my grandfather was very pissed about this was that the dress was pretty short-but you gotta have fun!
So we both had a great night! This is what the doctors don't tell you about!
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Birthday

1/7/2011
I have been feeling a little "under the weather" from the medication change, but Tuesday I had my biopsy and convinced my doctors to changes my meds back and now I am feeling back to normal. Really though, after getting my labs back, all that I think was wrong is that my magnesium and potassium were REALLY low. As soon as the office got the results, they called me and told me to take 8 pills of K+ and 900mg of Mg and in a few hours I felt waaaaaaaaaaaaaaay better. Some of the antirejection medications make mineral and vitamins leach from your bones and body and I think that was what was happening to me. When you do not have enough or you have too much K+ and/or Mg you can have irregular hear beats which can make you feel really rotten. I really thought everything was going wrong with this new medication and I was rejecting again, but after I took the K+ and Mg I felt fine and then the next day I got my biopsy results and it was another 1R/1A-which is no change on the rejection (I always have minimal rejection) and the inflammation went down! So now I am trying to get off the prednisone AGAIN and will go back in 2 months (after I have been off for awhile) to see if everything is ok.
If I was a normal heart transplant patient by now I would be off the prednisone, have a regular medication schedule, getting labs every month (I get them about every other week to every week), and go to the clinic every three months. Knowing this, I just did not feel that it was a good time to start nursing school, so I finally emailed my counselor and told her to push me off until the fall of 2011 because of the complications. I feel good about this decision because it will give be more time to get back to normal and do things that I would have never been able to do.
Well I just celebrated my 23rd birthday! I have to thank God and my donor for letting me be with my family for another year.
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Wow! Ya know, one of the best things about blogging (for me) is that it's a bit like keeping a diary! As with a diary, when you need a little inspiration, you can look back over some of your old stuff and very often you can sometimes amaze yourself. And that has just happened to me.

Like many people, a new year gives you the chance to clear the decks a bit and start to look forward and try and form 'a plan'. Ya know, out with the old and in with the new kind of stuff and it was for that reason that I decided that I would look back at how I felt at this time last year. I've got to say, it felt almost like reading someone else's blog but with whom I could really relate! A different person entirely but I could see that he was dealing with the predicament he was in, in much the same way as I would. ‘He’ was of course desperately waiting for a Liver Transplant and Hepatitis C was ruling every aspect of his life.

And that's it. That's the 'nail on the head' I've been looking for. Suddenly, for a brief moment the shroud was lifted and I could see what I was floundering around looking for. Who am I now? Not the person I had become, after experiencing the roller coaster ride that my life had always been, but the REAL ‘
Brand New Me’ since I received a full liver transplant and now was ‘master’ in his fight with virus.
No, not the guy I thought I was when I wrote ‘Brand New Me’, not the guy I thought I would become when I wrote ‘Gentlemen, We Can Rebuild Him’  But the man I now see everyday in the mirror and like I said, wow, he’s a very different but very recognisable chap at the same time.

I suppose the seriousness of my situation for the last couple of years has knocked the child out of me and maybe now those very same things are helping me find him again. In a strange kind of a way, I feel like I’ve been reset to a ‘default mode’. The guy I was before life got in the way. More childlike, maybe, but now that I’m starting to recognise him again, I seem to be getting more and more comfortable with him.

I’d like to say it feels totally great, setting out on a new road into the unknown, like I have so many times before. But this time around, understandably, I’m going forward with some trepidation. I realise that now as I sit here and write but am aware that again, going forward can only be better than where I have come from.

As a younger man, I lived and worked abroad for many years, following the seasons and the tourist trail as I travelled and tried to earn money as I went. It was great fun and one big adventure but like everything, it had its downsides too. I can remember, as each season was drawing to a close, how down I would feel. All the great people that I had met, I was now about to say goodbye to. No matter how great the intentions of staying in touch, I knew that for many of them, this would be the last time I would see them. They, like me, were backpacking on their own journeys of (self) discovery although for me it was a journey of rediscovery. This had been brought about by a brief, but what later turned to be a devastating foray into the world of drugs and addiction.

Again, we were all getting ready to depart for new destinations and new adventures. For me, even though I knew it was an inevitable conclusion to another happy chapter, I always faced it with a heavy heart. It was as though it was period of pre-grieving for what I was about to lose until I could finally square it in my head. Then, after the final leaving party and the hangover had lifted, I would pack up my kit and set out on the road with a renewed lust for adventure. For sure I worried at points, setting off into the great unknown, but these worries were far out-weighed by the myriad of possibilities that lay ahead.

So, where does that leave me now? For sure, I can’t just pack up and move on like I once did. I have my family to consider and they are one of the few things that have kept me grounded and sane through all the turmoil I have been through. But I still can try and get back to the naive joker who was creative, laughed a lot, cared a lot and had a sense of adventure; back to my ‘default setting’.

 

And so that’s it, that’s my revelation which leads me to my resolution for this year and the first that I have been able to plan for sometime. Somehow, I’ve got to ‘shoe-horn’ that into my life in a way that fits with my family and financial constraints. I definitely need a job of some kind, something that I can get my teeth into and will hopefully benefit others. But definitely not a job that was as all consuming as my last one, which ended up ruling my life. I need to ensure that whatever I do it leaves enough time for my family but also leaves time to allow for some kind of creativity.

If my experiences so far can take me to fulfil this first resolution of what I hope will be many then maybe it will not all have been in vain.

Have a Happy & Healthy New Year Everybody…. Ian
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12/31/2010-Last Entry of 2010!
I have to sneak in one last entry of 2010! This has been one amazing year! A lot of hard work, many, many struggles, a lot of learning, changes, going out of my comfort zone, getting many opportunities and experiences that most people don't normally get, and a full year with someone else's heart!
Heart/Health wise this year started off really tough and it did not turn around utill the last few months. I had bad rejection many times and was on prednisone tapers that were anywhere from 1000 mg of Prednisone/Solumedrole to 100mg of Predrisone to being off for 3 weeks (and I finally got my face back! but now I am back on the prednisone so it is gone again). But I was so lucky that I did not have the antibody rejection and have to stay in the hospital, the worst I had was having to go in 3 days in a row for IV medication.
I am also so fortunate that this heart feel so strong! It honestly feels....undescribable...I don't know if everyone is walking around with hearts feeling like this, but you if you are, you are some lucky ducks. Even on my worst days, when the medication makes my heart feel so weird and the beats are off, or the rejection was bad, I still feel way better than when I was 5 years old-before there could have been that much damage to my heart. I said this to someone before, it just feel so good, so natural with this new heart. To not have to have something mechanically keeping your heart going (like a pacemaker, LVAD, ICD, etc.) the mechanical stuff is great for an emergency, but it is not the same as a real heart. It is not great for people who are still highly active and/or will need the mechanical support for long-term use.
I am finally used to the right heart caths! You can poke me in the jugular as much as you want! I am getting used to the nausea, sort of. I changed one (of my 3) antirejection meds to from myfortic to rapamune (because my biopsy showed mild rejection/inflammation. I am not liking the rappamune, it has done a number on me and I am hoping I can go off of it at this next appointment. So far my headaches have gradually returned, I am short of breath, by blood pressure is high (normally it is perfect and I don't even have to take anything to lower it! I am so lucky!) and I am still nauseous, and I don't know if the acid reflux is worse all the sudden or it has been bad for a while and I have just not been paying attention (the antirejection meds really rip up your stomach so you are put on 2 antacids). But yet all this was not enough for me to call the doctors office early and get a sooner appointment or get try to get off the meds.
It is just starting to hit me-13 1/2 months later, that this is not really my heart. I got this heart because poor person died. I know I could not have prevented their death, and my illness had no correlation to their death, but it has just started hitting me that this could have been one of my family members (or myself) who got in a fatal accident and died (it happens everyday). I think I came to this conclusion with all of the excitement over the float in the Rose Bowel Parade and seeing all of the donors florographs-it put a "face" on the donors (like how being a volunteer with CTDN and talking about my transplant I am trying to put a "face" on transplants, it was just one of those moments), so many of the donors are so young, like my age, you just don't expect people to die young. But it also makes me remember that I have to live for my donor and their family, and the life I was given will not be in vain.
I have gotten so many experiences that I (probably) would not have been able to do/been given if I was in school/working/did not get the heart transplant. I got to travel and live with my sister and cousin-away from my parents. That was sooooooo cool! I grew a lot closer to my sister, we had a lot of fun, and learned about how to rent a house and set it all up-without any help from our parents!
I have gotten many speaking opportunities, many volunteer opportunities with CTDN, and a internship with a nurse educator. At all of the place I learn so much-and hopefully I am again putting a face on transplant. These opportunities I would not have been given without the transplant or if I was in school and they have been so cool.
One thing I have tried to do this year and will try to do in 2011 is be a support person for the younger people that need a transplant. I did not know anyone young that had a transplant, it wasn't until 6 months out that I met some friendly transplant people at TRIO, but it wasn't until I went and talked to another young person in the hospital that I met someone closer to my age that had/needed a transplant. The reason this makes a difference is so many of the people that are transplanted at my hospital were near retirement when they got their transplant, so they just retired. I am just starting my life and I still need to go back to school, so there are a whole different set of issues with me and it is nice to talk with other people my age to see if they are struggling with the same things. But for me I definitely had to step out of my comfort zone to even go to groups like TRIO, much less talk to people my age about transplants, but I think that this was is such a pertinent part of the transplant process for someone waiting, that one of my goals (and if you are the prayerful type-you can pray for this) is to keep stepping out of my comfort zone and talking with transplant people.
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Hi Folks,

For what seems like forever, I have been saying “Once I’m better, I’ll be able to…”! What? Get back to normal? Carry on like nothing ever happened? Put it all behind me?

Well, the first two of those (get back to normal & carry on like nothing ever happened!!!) will never happen. It’s not that I’ve let the genie out of the bottle and it doesn’t want to go back in, you understand. But more like some weird ‘TV soap plot’ that I could never have imagined would ever happen in real life, was unleashed on me & my family.

I can remember (way back when…) having to endure an episode of ‘Eastenders’ that Mandy had been watching. Some particular piece of torrid drama unfurled on one unfortunate character and I said “Why does that always happen on these types of programme? Anyone who ever seems to be doing well gets hit by some kind of personal tragedy. It’s so pessimistic and depressing (& predictable!). It doesn’t always have to happen like that and it certainly doesn’t in real life!” – WRONG!

Okay, so it happens! And it happened to me. Yes, I’ve still got the virus, and yes, some days I feel like crap. But I did for many years prior to my transplant without even realising it. And once I did I kept on working up until about four or five months before my transplant. I was working fifteen hour days with an hour or so travel time either side, to and from work, for six days a week! That was until my employer found out I had HepC and that I had not declared it! I was suspended from work immediately. After all sorts of inquiries and tribunals I was told I was allowed to return to work but under a final written warning! “Erm, let me think about that for a moment, er, thanks but no thanks. Don’t call me, I’ll call you!”

But now I need to get to my third point “Once I’m better… I’ll put it all behind me!” Okay, so I’m not completely better but I need to move forward with my life and that is what has been ‘bothering’ me lately.

As you may have read in ‘
How Do I Define Myself?’ that for me – ‘I am what I do’ so to speak. Now, more than ever, I need to go back to work.

But would you hire this man? After an ugly split with the company I sold my business to but with whom I was under contractual agreement (because of my HepC)? Bad credit history because this forced me to declare bankruptcy (because of my HepC)? Pushed out of a job by my last employer for whom I was working  (because of my HepC)? Not worked for over a year (because of my HepC)? Just returning to work after a Liver Transplant (because of my HepC)? And STILL has HepC!!! Now, I was an employer for many years and I wouldn’t hire me! You get my point.

So folks, if you’ve been in this kind of situation or something like it, and I’m sure there are others like me reading this, what do you suggest? What do I say when I get asked at interview “Tell me about yourself, what have you been doing up until now”? What do I write on the ubiquitous application forms when they ask about ‘time off sick’? And do I declare my HepC? Especially when I know I’ll never get the job if I do.

The thing is, I moved on once before in my life, when things weren’t going well, as many of us have who contracted this virus - because of a ‘dubious’ past. I put it all behind me, moved on with my life etc etc. I was even making a real success of things until one day out of the blue, I got sick. I don’t want to feel like I’m going backwards. I don’t want to stand still. But I’m also scared as hell that if I do move forward it will happen all over again.

 

Don’t get me wrong, it’s not all ‘doom & gloom’ here. I generally have a positive outlook on life. I always said that I would use this ‘second chance’ as an opportunity to switch careers (especially as going back into catering with HCV would be difficult) and do something that I really wanted to do. The problem is, I’m not quite sure now what that is and there just aint the jobs out there that there once was. I do keep getting calls to go for interviews because my CV etc looks quite good, but it makes no mention of my HepC nor my recent’ish history. So I go to the meetings and that’s the end of that. Surely there has got to be ONE job out there somewhere…? So any help or answers right now would be real helpful.

 

Take care everyone…. Ian

Please check out Ian Quill : My World - A blog for me and people like me, beating Hep.C
http://www.ianquill.blogspot.com

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One year on, A Strange New World...

One year on, A Strange New World... (Hepatitis C / Liver Transplant (Hep C) HCV Blog)

Monday, 27 December 2010


On this run up to the New Year and with Christmas just behind us, as with many people, it has prompted me to sit back and take stock of the year and to cast my mind back over the highs' and lows' of 2010 and where I have got to....

In some ways this has been a truly remarkable year. Not many people I suppose can say they did so much and yet did so little at the same time. And I doubt there are many people who would've traded places with me either.

But as the log fire starts to die, worn out kids are now in bed and the Christmas tree has started to wilt and fade I feel a sense of melancholy that I'm forced to give air.

I could only remember how last year as we were doing the same thing, that I was constantly wondering if this would be the last time I would get to view this special treat. I use the word 'view' because all though I was present and joining in as best I could, I couldn't say that I was whole heartedly enjoying this Christmas 'scene' because of the turmoil which at this point was raging in my head.

All the questions lashed to their own worry that were being tossed all around my brain like pieces of a wrecked ship being battered against the rocks, constantly pushing to the front of my mind on each wave of fear and wondering if these final pieces that I had been clinging to were now bobbing around in the foam; their fate too close to danger to call.

Maybe this sounds like I'm over-dramatising but I can honestly say that this was how I felt. With hindsight, the waters were much calmer than I was reading them and my 'ship' stayed afloat. Though the HepC had just about finished off my own liver, I got the call from St Jimmy's at about eight p.m. on January 28th and the following morning I had a full Liver Transplant.

What I will say for anyone who may be facing the same treatment that I was hoping for back then, is this; the hardest part of having this kind of operation is your own state of mind beforehand. It seems easy for me now to say that I shouldn't have put myself through that worry and neither should anyone else in the same situation but I did, and others will. The operation is the easy part; it's the 'not knowing' and the 'will it happen in time' that gets' ya every time.

But those of you who followed my blog back then know that relatively speaking, once it happened, I breezed through the Op without too much difficulty and my recovery after seemed fairly speedy. Then you may also have noticed that six months or so after I seemed to drop off the radar a bit and I suppose it's this 'bit' that I'm talking about now. The 'bit' that I seem to have lost and I'm trying to get back to.

I don't know if it's because of all the pain killing opiates and steroids that you get pumped full of after the op (and I aren't complaining here) and all the other types of medication for this and for that, but for the first few months you feel like your on a natural high (though it's anything but natural). Or it could be the 'new' liver that has revitalised the 'new you' or as I suspect, a combination of both; that the first six months, barring any complications and the initial 'soreness' are nothing short of fantastic! It sounds crazy but it's true! I even wrote in 'Brand New Me' (Feb '09) that it was 'the most life enriching experience I'd ever had!'

Strong words indeed and I suppose that although I never ended up on the 'rocks' that I had been fearing a year ago, I do feel now that somehow I have ended up sort 'washed' up on the shore. I am still alive; but I'm not the person I once was. No longer the foolhardy adventurer running along on any breeze I can find, no more the captain of my own ship; all that has been washed away. The experience has left me clinging to the shore looking for a new life, fearful of what has gone behind.

I hope that in this place that I have landed I can find a new way to live. Who knows, maybe the best is yet to come and somewhere here I'll find a new 'jewel' to prize. But for now this is a strange new world that I'm learning to navigate and will be for some time to come; or at least until I learn how to come to my own rescue again.

Take care everyone.... Ian

http://ianquill.blogspot.com - Ian Quill : My World
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Found this artcile on my Facebook messages and confirmed this on the UNOS website

 

Federal Trade Commission Alert Regarding Alleged Scam of Transplant Patients
The Federal Trade Commission (FTC) recently received notification of an alleged scam whereby patients waiting for an organ transplant are contacted by phone and requested to provide money in exchange for receiving a donor organ. It is unlawful to buy and sell organs for transplant in the United States. If you are contacted and requested to provide money to obtain a donor organ, please contact the FTC immediately by phone at 1-877-382-4357 or by Internet http://www.ftc.gov/ftc/contact.shtm. In general, if you are approached to buy or sell an organ for transplantation, immediately notify federal or local law enforcement.

http://optn.transplant.hrsa.gov/news/newsDetail.asp?id=1416

Please share this news with your friends.

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Did make it!!

I got the call on October 31, 2010 and got 2 new lungs on November 1, 2010. It is now 4 weeks later and I feel stronger each passing day. Understand, nothing is easy about the surgery or recoup period but it is worth it. I got on the tread mill today and walked for 20 minutes was not out of breath and my O2 level was 97 - 100. The last time I walked on the tread mill without O2 I lasted 2 1/2 minutes before my level went to 81 and I couldn't catch my breath. I was one of the lucky ones because I had a short waiting period. I had been called after only 3 weeks couldn't go through with it because my body was having a battle with shingles. Went on the inactive list until the virus was gone, went back on the list and received the call a couple of months later.I feel so blessed can hardly believe that it all happened and I have a set of new lungs. God bless the family of the donor and my prayers will always be with them. I think the biggest question you need to ask before getting the transplant is having the commitment to do what needs to be done after the transplant to do your part ot make sure you give yourself the best change for survival, Take care everyone and God Bless.
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Hello everyone

Hi everyone my names Lisa , Im from South Australia. I had a double lung transplant in 2004.Im looking forward to meeting and chatting to everyone.The reason for my Transplant was Pulmonary Fibrosis which i got from a Wilms Tumour when i was two.The chemo and radiation scared my lungs. Life is great now i have been married for 18 yrs have to great boys 13 and 16. I am so grateful that i have the chance to watch them grow up.

So hello everyone!!!!!!

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Dottie Lessard- Inspiring Athlete

If you are looking to be inspired and moved to the max then listen to Dottie Lessard while she is being interviewed by magic 1067 . If you know someone with Cystic Fibrosis please pass this link onto them or click the share facebook button.

http://www.magic1067.com/on-demand/Episodes.aspx

Dottie is the author of "Seven Letters That Saved My Life"

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