well if you like to live in a bubble thats ok, dont mentor other people to do so. transplant patients should decide for themselves what they want to do with their life. not what their transplant team says. you say you dont have a problem with animals but then you go on to say they ruin life. well, my animals dont ruin my life. they bring joy to my life, whether they make me sick or not. at the moment my CLEAN INDOOR cats who have their nails clipped are pawing at each other. nyaw! quality not quantity folks, its not about numbers. complain all you want, id die for my pets and i know my dog would die to protect me!<a target=new class=ftalternatingbarlinklarge href="http://members.iinet.net.au/~kimandky/kumabeach.jpg">kuma the akita</a><a target=new class=ftalternatingbarlinklarge href="http://members.iinet.net.au/~kimandky/pepeshnozz.jpg">pepe the maine coon</a><a target=new class=ftalternatingbarlinklarge href="http://members.iinet.net.au/~kimandky/pheobesmall.JPG">pheobe the moggy</a>my babies!!!p.s this is like the 10 millionth time ive had to edit this. this layout is crazy.
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Starting the xplant process, questions!
- Thread starter anonymous
- Start date
in the transplant information booklet in the UK it says sexual activities may be resumed when the person feels well enough. it does not mention anything about hygiene, i think they leave that to people's discression and common sense!! i understand what people are saying about pets being a part of their lives etc, but IMHO......the waiting list for organs is huge, and many many people die whilst waiting. if you are going to have a TX and then not comply to treatment and regulations that are put there to help you make the most out of your new lungs, should you really accept them when there may be someone else waiting who isnt going to jeopordise them over the sake of keeping a bird in the house?! i am by NO means saying that all the advice should be followed at all costs and strictly so (ie, what you eat is also picked up on and i feel this should be taken with a pinch of salt, no pun intended) but if having a bird in the house puts you at greater risk, and i can see why it would, germs travel through the air, birds can carry a VERY nasty disease (cant remember its name) and they flap their wings therefore aiding its circulation, surely it is safer and more sensible to have the bird at someone elses house? there is no objective truth, just opinions, and this is mine. hope everyone is ok and smiley <img src="i/expressions/face-icon-small-smile.gif" border="0">
its called psittacosis and you can only catch it by breathing/swallowing bird poo or having a bird sneeze on you. you are more likely to catch it from a walk in the park than a pet bird. the only people who catch it frequently are people who work in avaries/farms etc. my partner is more of a risk to my health than a bird for crying out loud. people keep talking about common sense so why dont some people follow their own advice? common sense tells ME that relocating the bird to outdoors or a room thats not used often would be a good idea. also to let someone else handle the bird/cage and not putting your face near the cage. THAT is common sense, getting rid of a loved pet isnt. to the last person, tell me why a bird should render us unworthy of a transplant? germs are EVERYWHERE. hows this for a new transplant rule, anyone who steps outside the house does not deserve a transplant! in fact, anyone who moves an inch cant have a transplant! stupid, isnt it? existing puts you at greater risk, not a bloody bird. who are you to say who deserves and who doesnt deserve a transplant? you are catching radiation from your computer, no transplant for you!q u a l i t y ... can i not stress this enough? sorry if i seem rude and blunt but trying to dictate someones life just to extend their lifespan for a couple of years is just as rude. id prefer to be dead than wearing a gas mask everyday of my life. i want my family to remember me being happy, not locked up an depressed. oh, i forgot to mention you can catch psittacosis from.. wait for it.... HUMANS! guess all human contact is out of the question then.........
oh for goodness sakes kylie, PLEASE stop doing that!!! you always take peoples words and twist them to look really nasty <img src="i/expressions/face-icon-small-sad.gif" border="0">i never said that ANYONE doesnt deserve a transplant; everyone in the whole world has the right to live as far as i am concerned! its just for me personally if i knew i was taking large risks and jeopardising the precious gift i had just been given, i would feel bad for those still waiting and those desperate to get one and who would do anything to make it safer and for those who died waiting.that is for ME. i never said you dont deserve one! dont change my words!!!!!!! <img src="i/expressions/face-icon-small-sad.gif" border="0">but i do have to thank you for the information about psittacosis, thats very interesting and i never knew all those facts. <img src="i/expressions/face-icon-small-smile.gif" border="0"> they are really helpful in making me understand about these diseases. as i SAID in the first post, there IS no objective truth and so i was quite open to the fact that i am often wrong about things! i am sure you are a lovely person, you offer very good advice and support regularly but you can come accross as nasty in your attitude. just as i can apparently come across as judgemental and i am REALLY sorry if you were able to read into that. i just find it really upsetting when you are so hostile and agressive and am asking you very nicely not to repeat my words but with your spin on them.thank you very much in advance.
just reread my initial post and i think i can see my mistake..........i used the word "you" instead of the word "one"ie "if one were to accept Tx blah blah" is what i should have put - saying "you" implied i meant it at you. which i didnt. i was speaking hypothetically.really sorry kylie.
AbsintheSorrow
New member
Thanks for being honest, and may I say, so detailed in answering my questions. It really helped. It still doesn't look like it's worth it... but I imagine you're right and that it's because I still have quality of life now. Maybe it'll look worth it when I can't do anything for myself anymore. <img src="i/expressions/rose.gif" border="0">
'should you really accept them when there may be someone else waiting who isnt going to jeopordise them over the sake of keeping a bird in the house?!' that sounds like a definate comment of an undeserving transplant candidate to me! no word twisting there.if i was a person who needed a transplant and had a bird id feel like complete crap if i read your comment. im sticking up for these people, making sure they know that the choice is theirs and that they should not feel guilty for keeping something as simple as a bird. so if you think im doing this for my own gain you are wrong. people who find my comments hostile obviously have some kind of self doubt about their views, otherwise why would they listen to a person they dont know. dont say sorry to me, this doesnt affect me. im not the one who has a bird, needs a transplant and now feels like a loser!
Back to the conversation at hand...Last night, when I was reading all of those pre/post suggestions (thank you for putting those up, Joanne - they were extremely helpful), I ended up crying. I didn't know if the transplant process was worth it all but then I thought - you know, once I get out of the hospital and get through that first year or so of being poked and prodded, no matter how painful, I am going to be so thankful I did it.Anyway, here is my hospital's transplant website - it has some extremely helpful information about what to expect - like what you'll be hooked up to when you wake up out of surgery, or what sorts of meds you'll expect to be on and their side effects, or when you can probably have sex (8 weeks after transplant), or how to move while you are stapled up so as to cause the least amount of pain...http://www.usctransplant.org/lung/index.htmlThere is a lot of info on the site, but I highly suggest taking the time to click on every link.Joanne - (or whomever is post tx here) - are we on Prednisone for the rest of our lives? High or low dose? I react very strongly to Prednisone - even 30 days on it immediately cause muscle weakness and joint problems, and I get VERY bloated to the point that it is uncomfortable to breathe - this is even on low dose, I also hate the dome face thing. Is this just something we learn to put up with? (I honestly realize this is a vain question and I hate asking it - but I just want to mentally prepare myself -I also realize the freedom to breathe makes it all worth it, but I was on Prednisone for a year when I was a kid and it caused some serious mental scarring because of how people treated me when I got fat from the steroids).Thank you to everyone who responded to this post, by the way, it has been SO helpful.Piper
<blockquote>Quote<br><hr><i>Originally posted by: <b>AbsintheSorrow</b></i>Thanks for being honest, and may I say, so detailed in answering my questions. It really helped. It still doesn't look like it's worth it... but I imagine you're right and that it's because I still have quality of life now. Maybe it'll look worth it when I can't do anything for myself anymore. <img src="i/expressions/rose.gif" border="0"><hr></blockquote>Sorry to be blunt, I just can't understand this. The options are very limited when you get to a certain point... a transplant or you die.Prior to transplant my physiotherapy regime took up 3 hours of my time and for the rest of the time I either napped because I couldn't get a good nights sleep or I just sat around wasting away. I had little or no energy. This is not a pleasant way to live. I had absolutely no idea what my future would hold.August 2002 - After numerous infections my doctor told me to travel to Sydney to see the transplant Doctors. I was still reasonably well but in obvious deterioration.September 2002 - I was on a holiday and I got absolutely flattened. I could not walk more than 100 metres without almost collapsing from breathlessness combined with servere arthritis.December 2002 - I honestly thought that this was about to be my last Christmas when I went into hospital in the week leading up to it. I had numerous infections and just couldn't get better. They had tried many different anti biotics in the previous months and nothing had worked. They finally found one that did - I think it was cefapime or somethging like that.February 2003 - I was listed for a transplant.August 2003 - By now I had stabilised but had little in the way of quality of life. I got a phone call for my transplant and flew to Sydney for the operation. The only fears I had were that I was actually not sick enough to need one. I wasn't quite on oxygen at night and I know of many people who were in situations much worse than mine. But after I spoke to my Doctors I realsied that it was the right decision. I can honestly say that the operation itself did not scare me.The 6 weeks after the operartion were pretty tough. Many new drugs with side effects the effects. The most noticeable of these is prednisone. Apart from the obvious physical effects it made me very nervous, agitated and sleeping at night was very hard. for the first 4 weeks I got very little sleep. The pain-killers also had side effects such as hallucinations which were unpleasant but neccesary.Last year I had only 2 units to ficish toward smy accounting degree. I was able to finish both of those and graduated in December last year. I now have a good job as a graduate accountant and am able to many things that I couldn't have dreamed of. I play squash, walk an entire 18 holes of golf carrying my clubs over my shoulders.Taking 50 tablets a day (including 20-odd pancrease) is infinitely more preferable to over 3 hours of Physio (plus being so stuffed from it that the rest of the day is a write-off).It is annoying when people don't take care with their personal hygeine. However, I have been in many different situations and so far I vae had one course of Ciproxin and nothing else. No rejection or major infection at all.Apart from those intial first weeks there has been nothing that has happened that would make me question my decision and I can't really envisage a situation where it would.Andrew 23, tx.
andrew im so glad you have not stopped living your life just cause of a few bugs out there. i really feel for emily now that she has a 'not worth it' view about transplantation. THIS is what ive been trying to get at all along, THIS is what ive been arguing about. people have now been given the impression that you dont have choices. im sure it wasnt peoples intention to scare the pants off people but boy have you all done a good job. im just hoping someone is listening to what i say, which is, you DO have a choice after transplant and NO ONE should judge you if you choose not to live in a bubble. emily i hope you change your mind about this, dont listen to the restrictions, youre entitled to a life, just the way you want to live it!got a question for you andrew. someone told me that sydneys transplant team is better than melbournes. is this true? i heard sydney gives more support and aftercare and that melbourne is 'hello bye bye dont talk to me again'. this was from a person who had a transplant quite a few years back, so i dont know if the support is better in melbourne. whats your thoughts?
its true, transplant isnt for some people. the idea of having to do all those extra things and take all those extra precautions in order to live is too much for some. and that is completely fair enough, its everyones decision!if you believe transplant isnt worth it, dont have one! thats fair enough!!! i have a friend who decided that, that is completely her choice, for her, she feels transplant would reduce her quality of life, so she is choosing quality over quantity. for me, the idea that i will be dead in 2 years (have recently been referred for assessment) means i would rather live longer and achieve more goals, even with some restrictions. its all a matter of choice. no one choice is better than another.
<blockquote>Quote<br><hr><i>Originally posted by: <b>Anonymous</b></i>Joanne - (or whomever is post tx here) - are we on Prednisone for the rest of our lives? High or low dose? I react very strongly to Prednisone - even 30 days on it immediately cause muscle weakness and joint problems, and I get VERY bloated to the point that it is uncomfortable to breathe - this is even on low dose, I also hate the dome face thing. Is this just something we learn to put up with? (I honestly realize this is a vain question and I hate asking it - but I just want to mentally prepare myself -I also realize the freedom to breathe makes it all worth it, but I was on Prednisone for a year when I was a kid and it caused some serious mental scarring because of how people treated me when I got fat from the steroids).Piper<hr></blockquote>i would also like to know whether the steriods are for life?
Kylie,I can't speak from any experiences in Melbourne and I don't know anyone that went there. I do know someone ffrom interstate that went to both when being listed and chose Sydney over Melbourne even though Melbourne was closer to home but I don't know her specific resons for doing so.All I can say is that the transplant team in Sydney has been great. They are on call 24hours a day and they continually remind you that you are to call the moment you have any symptoms (low FEV, high temp, sweats etc.). The team in Sydney is amongst the best in the world.Andrew.
As far as know, I will be on Prednisone for life. I am currently on 10mg per day and it will probably go lower. I do know people that have gone off it but I expect to be on it indefinitely. It is one of the MOST IMPORTANT POST-TRANSPLANT DRUGS. It does cause some physical side effects (round face, acne, dry skin) which are anoying but in the grand scheme of things a small price to pay.It is interesting that people have said that their joints ache when on Prednisone because I was told pre-transplant that the Prednisone will help my arthritis and it has. I also know someone who has a heart transplant who hates going off Prednisone because his joints ache and he can feel every bone in his body.Andrew.
Piper, I have many friends who had their tx at USC!! They love the center, the team and are doing well. Many of them had living lobar tx, as USC and Dr. Starnes is the creator of the living lobar.As of now, post lung tx recips are on prednisone for the rest of their lives. But there are a few people who are not. I think that those folks never had rejection, and they are from centers that are trying new approaches to post tx maintenance. Univ of Pittsburgh in Pennsylvania is a very cutting edge center and they are trying a very aggressive program. In fact, I am going to try to find 2 recent articles that came out of medical journals that are about what UPMC is doing about the meds. Sounds exciting for those of us who are waiting for lung tx, and those post tx. The jist of the article is "less is better" and that with the study they are doing, the survival was better with less. I will put the articles at the bottom of this message. Centers vary on the prednisone maintenance regime. Some go down to 5 mg every other day, some stay at every day. Ask your center. There are side effects of prednisone, but they are also treatable. Bone density - diabetes etc. I have both and being treated, with good results. The Moon Face... that is a personal thing. I have a slight moon face, on some days. My sister has no moon face. Let the team know about your past prednisone history. Also I will mention that drugs I took pre tx, react differently with me post tx. Could be the combination of drugs, the ability to breathe better, etc, not sure of the reason. It is fine to worry about your looks. You do learn to live with it, and for the most part I just remind myself on my puffy days, " small price to pay for living". Which when you really think about it.... it is truly a small price to pay. I know pre tx I was so concerned about the scar. But I can say at about 2 years post tx, you can barely see my scar, and the chest tube scars are a bit more obvious. In fact, I think I would have a hard time finding some of the scar. The surgeons do realize especially for women this is a great concern, so they do a very good job in making sure it is neat and "pretty". The scar is actually where the bottom of your bra is, so wearing a bikini you do not see the scar. But as I have learned, both men and women are very proud of their "war scar" and do not mind if people see it.Glad I can be of help. Here are the articles below.JoanneMay 2004 - University of Pittsburgh approach has lung recipients taking far fewer drugs. -Findings being presented at the American Transplant Congress. A lung transplant patient takes six pills a day, a regimen that is intended to safeguard the donor organ from immune system attack. But rejection plagues these patients more often and more vigorously than any other kind of organ recipient, so is it necessary that patients take that many pills? Not according to the experience of surgeons at the University of Pittsburgh Medical Center (UPMC), where some lung transplant recipients are getting away with taking just one anti-rejection pill daily, and others just the one pill four or five times a week, with no ill effects.Results of the novel clinical protocol were presented today by Kenneth McCurry, M.D., assistant professor of surgery at the University of Pittsburgh School of Medicine, at the American Transplant Congress (ATC), the joint scientific meeting of the American Society of Transplant Surgeons and the American Society of Transplantation.With more than a year of follow-up in many patients, Dr. McCurry found that even those patients who have been able to reduce their medications to one pill a day benefit from the approach, which differs from the conventional twice-a-day triple-drug therapy, said Dr. McCurry. "Bombarding the immune system with several very potent drugs has done little to improve the outcomes for lung transplant recipients, who continue to have poor survival about 75 percent at one year compared to other organ recipients. Moreover, the drugs have not done well to prevent chronic rejection, which affects about half of lung transplant patients by five years and usually results in organ failure and death. These bleak outcomes have motivated us to introduce an approach that we hope will enhance long-term survival, reduce the rates of complications associated with these drugs and improve quality of life," said Dr. McCurry, who also is director of lung and heart-lung transplantation at UPMC.The approach is the only one of its kind involving lung transplant patients, in whom studies that seek to reduce anti-rejection drugs are rarely performed out of fear that the lungs, already the most vulnerable organ to rejection, would succumb to an irreversible immune system attack, placing patients at risk for death. Ironically, lung recipients have the greatest incidence of immunosuppression-related complications, such as infection and chronic kidney dysfunction, providing incentive to search for alternative immunosuppression approaches. UPMC's clinical protocol involves a one-time dose of a drug that depletes T cells key immune system cells that are known to target the donor organ that is given just before transplantation. Following transplantation, patients are treated with just one anti-rejection drug, tacrolimus, that is administered at reduced levels. Since many lung recipients are treated with prednisone for their underlying disease, the steroid is continued after transplant but at a negligible dose, 5 mg compared to 20 mg.The rationale is to treat patients with as little immunosuppressive medication as possible following the transplant while preventing injury to the graft by the recipient's immune system. Since June of 2002, more than 80 patients have been treated under the protocol. At ATC, Dr. McCurry reported results in many of these patients, including 31 who have been followed for more than a year after transplant, several for nearly two years. The first 38 patients were given a pre-transplant drug called Thymoglobulin. One-year survival for these patients is 87 percent. The remaining patients received Campath, which appears to deplete T cells more broadly and for a longer period of time. Acute rejection episodes have been less in the Campath patients reported on at ATC compared to those who received Thymoglobulin. Twenty-five of the 38 Thymoglobulin patients had rejection episodes greater or equal to Grade 2, compared to two of the first10 Campath treated patients.There were no opportunistic infections or related complications in the patients treated with Campath; a small percentage of the Thymoglobulin patients developed either cytomegalovirus (8 percent), the bacterial infection Nocardia (8 percent) or post-transplant lymphoproliferative disorder (3 percent), rates that were comparable to conventionally treated patients. One-year follow-up results are not yet available to compare survival between the Thymoglobulin-treated and Campath-treated groups. However, the overall patient survival for Thymoglobulin-treated patients is 84 percent while in the Campath-treated patients it is 98 percent. "We are encouraged by these preliminary results. What remains to be seen is if our approach will have an impact on chronic rejection," said Dr. McCurry. "At this point, I think we can say that the standard multi-drug approach to immunosuppression may be excessive and leads to increased complications. Moreover, our promising early results suggest that altering the approach and reducing immunosuppression is not as risky as some would have guessed. The next step we should consider is a multi-center, randomized trial. Only with that kind of data might the transplant community embrace the notion that radical change is warranted," noted Dr. McCurry. "Personally, I think our approach will presage significant improvements in outcomes for lung transplantation," he added. To schedule interviews with Dr. McCurry call Lisa Rossi at 412-916-3315. Additional Contact Information: Lisa Rossi (cell 412-916-3315) Maureen McGaffin PHONE: 412-647-3555 FAX: 412-624-3184 E-MAIL: McgaffinME@upmc.edu --------------------------------------------------------------------------------Lung Transplant Patients Successfully Tapered to Monotherapy Using Alemtuzumab Medscape Medical News 2004 Early results of an ongoing protocol show that both the number of immunosuppressive agents taken and the dose of each can be reduced in lung transplant patients, and with very littleacute rejection, researchers said here Sunday.The study was presented by Kenneth R. McCurry, MD, from the University of Pittsburgh Medical Center in Pennsylvania, at the 2004 annual meeting of the American TransplantCongress, the joint meeting of the American Society of Transplant Surgeons and the American Society of Transplantation.At Pittsburgh, most transplant patients are being given induction therapy with a T cell depleting agent, followed by either no steroids or low-dose steroids and immunosuppressive monotherapy, usually tacrolimus. Dr. McCurry began his study in lung transplant patients in June 2002, administering thymoglobulin as the induction agent. That protocol was followed until June 2003, when new transplant patients were instead given alemtuzumab for induction.Most lung transplant patients also continued to receive a low dose of prednisone 5 mg (compared with the conventional 20 mg). They also were given valganciclovir prophylaxis for six months beforetransplantation.Dr. McCurry focused his presentation on the 42 patients who had received alemtuzumab; results for the first 38 patients who received thymoglobulin were included in the abstract and not featured as prominently. Pittsburgh will be moving mostly to alemtuzumab as an induction agent in lung transplantation, said Dr. McCurry. The patients who received alemtuzumab ranged in age from 26 to 70 years; 17 received a single lung transplant, 22 received a double-lung transplant, and two received heart and lung transplants. With follow-up of one month to oneyear, 41 of the 42 transplant patients are still alive. Sixty-four percent have had no rejection; 14% had a grade 2 rejection, and only two of those 6 patients received treatment with steroids. Nine patients had a grade 3 or higher acute rejection episode.Thirty-nine patients are receiving tacrolimus monotherapy, and of those, three have tapered to four-times-weekly dosing. Three patients have added mycophenolate mofetil to their regimen. Pulmonary function is excellent, with patients having less than a 5% decline, said Dr. McCurry. There has been one case ofcytomegalovirus and one case of posttransplant lymphoproliferative disorder.Session moderator Mark Barr, MD, an associate professor of cardiothoracic surgery at the University of Southern California, Los Angeles, told attendees that while Dr. McCurry's results were impressive, he was concerned that Pittsburgh surgeons might not be able to predict which patients are more likely to reject, and that they might not be able to properly monitor for and thus, treat rejection. "This is a gutsy protocol," he told attendees, noting the higher rejection risk with lungtransplants.Dr. McCurry replied that there is no assay available to predict who might reject, and he later told Medscape that patients are closely monitored through biopsies for signs of rejection. And, he said, patients with chronic rejection would receive rescue medications such as IVIG.Stuart Knechtle, MD, a transplant surgeon at the University of Wisconsin Medical School in Madison who conducted many of the initial studies of alemtuzumab for induction, told Medscape that it is too early to say whether Dr. McCurry's results will hold. "I'd like to seecontinued follow-up," he said. But he added that he was not surprised by the positive results, saying "they are quite analogous to what we've seen" with other organs.Dr. Knechtle said the research also adds to the evidence that T-cell depletion plays a key role in helping to prevent rejection, and that it also helps head off longer-term problems with infection and malignancy by allowing surgeons to taper immunosuppressive therapy.Pittsburgh plans to continue treating all lung transplant patients with alemtuzumab followed by tacrolimus monotherapy, and willcontinue to report their results, Dr. McCurry said. --------------------------------------------------------------------------------
yeah the lady who told me about sydney said they are great. she rings them with any problem she has, even after the years gone by since she had it done, and they negotiate with the transplant team here on how to go about treating her. she said that melbourne isnt as welcomming when it comes to that, they just leave it to the team in perth to deal with problems, who she doesnt have much faith in. i think one of the hospitals here has opened up a lung transplant unit, but i dont think that idea will last that long. perth hasnt got anything to offer to top surgeons. thats why all the good doctors leave <img src="i/expressions/face-icon-small-sad.gif" border="0">
AbsintheSorrow
New member
<hr></blockquote>Sorry to be blunt, I just can't understand this. The options are very limited when you get to a certain point... a transplant or you die.Prior to transplant my physiotherapy regime took up 3 hours of my time and for the rest of the time I either napped because I couldn't get a good nights sleep or I just sat around wasting away. I had little or no energy. This is not a pleasant way to live. I had absolutely no idea what my future would hold.August 2002 - After numerous infections my doctor told me to travel to Sydney to see the transplant Doctors. I was still reasonably well but in obvious deterioration.September 2002 - I was on a holiday and I got absolutely flattened. I could not walk more than 100 metres without almost collapsing from breathlessness combined with servere arthritis.December 2002 - I honestly thought that this was about to be my last Christmas when I went into hospital in the week leading up to it. I had numerous infections and just couldn't get better. They had tried many different anti biotics in the previous months and nothing had worked. They finally found one that did - I think it was cefapime or somethging like that.February 2003 - I was listed for a transplant.August 2003 - By now I had stabilised but had little in the way of quality of life. I got a phone call for my transplant and flew to Sydney for the operation. The only fears I had were that I was actually not sick enough to need one. I wasn't quite on oxygen at night and I know of many people who were in situations much worse than mine. But after I spoke to my Doctors I realsied that it was the right decision. I can honestly say that the operation itself did not scare me.The 6 weeks after the operartion were pretty tough. Many new drugs with side effects the effects. The most noticeable of these is prednisone. Apart from the obvious physical effects it made me very nervous, agitated and sleeping at night was very hard. for the first 4 weeks I got very little sleep. The pain-killers also had side effects such as hallucinations which were unpleasant but neccesary.Last year I had only 2 units to ficish toward smy accounting degree. I was able to finish both of those and graduated in December last year. I now have a good job as a graduate accountant and am able to many things that I couldn't have dreamed of. I play squash, walk an entire 18 holes of golf carrying my clubs over my shoulders.Taking 50 tablets a day (including 20-odd pancrease) is infinitely more preferable to over 3 hours of Physio (plus being so stuffed from it that the rest of the day is a write-off).It is annoying when people don't take care with their personal hygeine. However, I have been in many different situations and so far I vae had one course of Ciproxin and nothing else. No rejection or major infection at all.Apart from those intial first weeks there has been nothing that has happened that would make me question my decision and I can't really envisage a situation where it would.Andrew 23, tx.<hr></blockquote>You don't understand it? I made it very clear. Because I still have an "almost" normal quality of life right now, so it doesn't seem worth it. It probably will by the time I'm where I need to make the decision. That's exactly what I said. I thought it was pretty self-explanitory.
i think it is extremely difficult to try and invisage yourself at that stage where you have no other options left, and therefore to think of all those restrictions NOW for ppl who are well still like Emily (sorry to use you as an example!!) must be really hard, virtually impossible even!!!! for me, now ive been approached, the decision is "yes" to getting assessed. but its still damn scary!also, although it seems "straightforward" to you andrew, and the majority of ppl who need it come to accept it and take the "yes" decision, transplant isnt for everyone. and that is totally up to them. i really believe its something that has to come as a gradual natural acceptance or decision, as Emily says, when the time comes. it will be the right decision for that person, whatever they decide. <img src="i/expressions/face-icon-small-smile.gif" border="0">
AbsintheSorrow
New member
Just wanted to say, I don't mind you using me as an example. <img src="i/expressions/face-icon-small-happy.gif" border="0"><img src="i/expressions/rose.gif" border="0">