Well D-Day is nearly here! My Battlefront Programme airs tomorrow!
I can't believe how much support I have had from family, friends and complete strangers it means so much!
I am really nervous about watching tomorrow, I will probably do so behind a cushion! (I still haven't watched the GMTV interview.) I have no idea how it has been edited, what has been cut and what they have kept... I will see it at exactly the same time as everyone else! I'm afraid that I am going to come across as a complete emotional wreck, as I did cry on a few occasions!
I went to Clinic today for blood tests and everyone was so nice, the nurses on the two renal wards are going to club together to get two tv cards to watch me! I put up posters around the hospital about the programme airing and I spoke to Mr Bakran's secretary so she could let him know that the programme will be on. All went well at the clinic, I didn't see a Doctor - as this was just a blood clinic, I did mention to the nurse about the problems with my knee and she did some extra tests so I will find out what this means on Monday when I do see a Doctor at the transplant clinic.
I have been asked to do a few talks recently, public speaking is not my forte so I am not too keen, but I think I might just have to bite the bullet and do it, otherwise I will get nowhere with the campaign! I have been asked to do some talks on organ donation but also a talk to renal patients about dialysis and kidney transplants etc! I wish that when I was first diagnosed this had been an option to me, but as I "Crash landed" as they say (diagnosed over night and straight on dialysis) this just wasn't possible.
I have been trying to get into the media for a last push before the programme, I have managed to get articles in two local newspapers, The Warrington Guardian and The Manchester Evening News, so they will be in tomorrows papers and will hopefully encourage more people to tune in!
Finally I am really chuffed to say that this week I found out I had won the McCormick prize for volunteering (the one I had to reluctantly nominate myself for) but I was also really surprised to find out that I had won another citizenship prize for a selfless act in the community! The prize giving is on the 5th June so I will keep you updated...
So tune in, Tomorrow, Channel 4, 11.30am!
No going back now!
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25 comments:
I'm looking forward to seeing the programme, I'm sure it'll be great. I'm not going to be able to watch it live as I have exams tomorrow morning, but I've set the HDR and will watch it tomorrow afternoon when I get home.
Hugs,
Moll x x
Thanks for your continued support Moll!
Can't wait to see how the programme comes out and will be interested to hear what you all think :o) x
Glad you had a good Birthday celebration :D....well done Holly :D and good luck. Will watch your batlefront programme and 'V' it so girls can also see when back from Uni.
You have been an inspiration to sooo many and don't let such a tiny minority get you down.....
best wishes Elaine Rach & family x
Holly, we just watched the programme. You did us proud. x
Holly,
I'm posting here on your blog because battlefront have a heavy handed comment moderation policy. Just so you know, I stand by EVERYTHING I have previously said. Ignore the false apologies. I would not be stupid enough to write "Kate" with a lowercase "k".
However, I commend you for now being more honest about the reality of a transplant on your blog and her battlefront program. The cavalier attitude that is displayed to renal patients ("Oh it is OK. Just get a transplant and you'll be fine" like they are a definite, life long cure) isn't helped by a "disneyfied" view of "happy endings" which have been propagated to a large extent by this campaign. I have noticed that people are now more accurately stating transplant (and their subsequent medications and side effects) as being "a new phase of your life".
However - I don't think it is wise to talk about eating chocolate, cheese etc. If you care about your transplant, you would look after yourself better. Holly Cocker, who had the exact same restrictions as you has not allowed herself to become this obese. Sadly, there is a correlation between graft life and obesity. Since you already have a cadaveric transplant against you, I would suggest you lose the weight and start an exercise programme. Your actions (how you treat your body and the state you've allowed it to get in) speak louder than words (I appreciate my gift of life). I am not the first to comment on this.
Kate.
I've recorded the programme to watch in a minute hun as I'm just sitting on my nebulising machine for an hour.
Kate - whilst I fully accept you are as entitled to your opinion, I think it's particularly interesting that your views on the negative sides of receiving a transplant are in such conflict with those who are actually experiencing such things.
I'm one of the founders of the charity that Holly is an advocate for, and in the last few years have been priveleged to meet and get to know hundreds of people who are involved in the actual donation/transplant process (either donor family members, people on the transplant waiting list, families whose children have died awaiting transplant, transplant recipients, etc).
In all this time, I have only ever come across one patient (a kidney recipient) who said that life after their transplant wasn't as good as life on dialysis, due to having had a lot of complications.
And it's also important to remember that for all those of us who will need organs OTHER than kidneys to survive, the choice is a very stark one - either a transplant from a deceased donor or death. It really is that simple. With kidney disease you can last many years on dialysis (if you can cope with spending half your life in hospital, having to follow extreme fluid restrictions all your life and coping with side effects such as tiredness and nausea).
For those of us whose lungs, hearts or livers are diseased, there is no third way. Yes, some people do refuse a transplant as they don't feel that they wish to face the potential complications, anxieties and difficulties that they have to accept the risk of if they go for it. And that is completely understandable. During a transplant assesment process you have every potential complication spelt out to you very clearly. It is NOT presented as a "cure all" as the team have to be sure you have all the facts infront of you. You seem to be saying there is a "cavalier" attitude presented to transplant patients from their medical teams that everything will be simple. And yet you've not (I presume) been through the transplant process to see that this is not actually the case?
I'm interested in your thoughts and views and I'm not here to dismiss them. But I would be really interested to know whether you would ever consider a transplant for yourself or a loved one of yours (e.g. a child) in order to live? Would you feel that it would be better to die than to take on the potential side-effects/risks in order to regain a happy, full life? And how do you feel about other medical treatments? Would you refuse cancer treatment because you could lose your hair or develop a "moon face" from the drugs (like Holly has)?
I take 80 tablets a day to stay alive and spend 1.5 hours a day attached to a machine breathing in drugs. Every few weeks I spend 2 weeks being pumped full of strong antibitoitcs straight into my bloodstream. Yes, I get side-effects and yes, there are risks involved. But I still enjoy my life and I have absolutely no doubt they are worth it.
Finally on your comment of:
"isn't helped by a "disneyfied" view of "happy endings" which have been propagated to a large extent by this campaign."
You seem to be portraying Holly's campaign as something that has taken over the nation and created a false view of transplant to every man, woman and child in the country! Holly's campaign has achieved a huge amount in a short space of time, but I think you'll find that it's actually one of numerous campaigns that are constantly running together all year-round by indiviudals (like Holly), charities (such as Live Life Then Give Life) and health agencies (such as UK Transplant). Are they all presenting a "disneyfied" view simply because they are reporting on the happiness and joy of those who have had their lives saved and transformed by transplant? When the vast majority of post-transplant people are TELLING US how happy they are to have received the gift of a donor organ and donor families are telling us how positive it was for them to donate....should we tell them to go away because they sound too positive about it? Or should we publicise their stories and let people hear from those who have ACTUALLY experienced and actually know what its like from personal experience?
oh go away Kate noone is interested in what you have to say. You have insulted every transplant patient and everyone who has donated their loved ones organs.
go crawl back under the rock you came from and shut up.
oh and it seems you have a few problems yourself not knowing who you are from the comments you put on the battlefront page
Kate,
I find your comparison between myself and Holly ridiculous and unfair.
We were treated in different hospitals with different course of drugs and treatments. I am not on steroids for one. As you probably know they are a a big factor in weight gain amongst tx patients.
I also was very frail and too skinny before my transplant. I have put on 6 kilos since and am now a normal weight. Holly and I probably eat exactly the same things - I know after 5 years of not being able to eat chocolate I am quite partial to it!
Please leave the topic of Holly's weight alone, it's non of your business.
Thanks.
Holly C
First off - why do people automatically assume I am completely ignorant of organ failure and organ donation? Although my views may differ to some peoples, it does not mean I have no personal experience of this. Granted, the facts I speak of are not highlighted or spoken much about (like graft life, life expectancy on dialysis etc), but just because people choose not to focus on this does not mean that I have "no personal experience" or "knowledge". For the record, I do have experience and I am educated, hence some of my objections.
I have never stated that people would be better off not choosing an organ. However, it has been noted that statistically a form of dialysis (home nocturnal) gives the same life expectancy as a cadaveric kidney. I will admit that my focus is mainly on renal transplants. I have never mentioned other types of organ transplants. I am aware it is a literal matter of life and death.
As for coping for "many years" on a dialysis machine, it is a possibility in rare circumstances, but the average life span on dialysis is 7 years. I wouldn't personally consider that many years. I thought it would be worth mentioning that there are other forms of dialysis apart from thrice weekly in-centre hemodialysis - not all dialysis patients are on a fluid restriction, or even dialyze in hospital. Its important to correct you on this because this is yet ANOTHER renal misconception that people have. I'm sure you feel the same way when you hear "Isn't cystic fibrosis a white person's disease?" or "Won't that cough be gone by next week?".
In individual circumstances - I am not particularly for or against organ donation, but I am against ignorance and misconceptions. I have never stated that medical professionals gloss over the ugly side effects of transplants, I was referring to the general public and their cavalier attitude of "just get a transplant", especially towards renal patients. I know full well medical teams express the brutal truth to potential recipients.
Again - why do people assume I have NO personal experience of this? Would I appear more "knowledgeable" if I just rambled to Holly about how her campaign is totally wonderful and what faultless role model she is and how well she demonstrates she appreciates that recycled kidney by the way she meticulously looks after herself? I've found that lying to people doesn't help them much.
In my writings, I was referring to the general public, and how downplaying the effects can hinder renal patients lives (I'd imagine other types of patients lives too) because they "can just get a transplant" and not know that they will never be normal, healthy again and will be reliant on pills and dialysis until them or the kidney dies- whichever is sooner.
Would I consider "a" transplant? That is a very, very general question because there are many organs that could be transplanted and situations that could occur. But, yes, I would consider it on a case by case basis. I would arm myself with the facts, life expectancy statistics and knowledge of the drug regime (and side effects) first. I will state this again for clarity - I am not ignorant of organ failure and its treatment (although my interest is renal medicine). As for the family member - it would be their decision. If I "forced" them to die that would be despicable - if I "forced" them to live that would be equally abhorrent if they did not want to. I would not be the one enduring the treatment. Invalid point however, because you cannot force an organ on somebody.
As for the cancer treatment - same answer applies. What type of cancer, what type of treatment and what success rates? I think what you are really asking is "would you refuse ANY treatment with side effects?" To which my answer would be "Depends - but arm me with the facts first". I believe in informed choice.
Glossing over the facts with "happy ending" fairy tales keep people ignorant when there are some nasty diseases that need curing. Properly. Transplants are not a cure.
I do believe to some extent that transplant charities do gloss over the facts, yes. Holly Shaw's campaign particularly goes along with the myth of a "happy ending" and this angers me because the effect is has on the expectations of patients. Have you ever had to console a patient (or their parents) because they thought a transplant was a cure? Or tell them that their likely hood of getting a third transplant (because their previous two had only lasted 4 and 6 years) are almost nil because of the amount of antibodies they accumulated? Or come up against complete disinterest by the public because your "disease" is not as publicized as others, and not as "rare" to warrant as special mention? Its ok if you get renal disease - you can always get a transplant. End of story. I know you are not particularly focused on renal matters - but the occurs far to often. That is my objection. I am not against the organ donor register - just the campaign and some of the behavior of its spokesperson.
Kate
OK Kate, you have made your point both here and on the Battlefront many times, everyone has listened and given you the chance to argue your point!
I have explained my views on my blog and I think the programme clearly demonstrates the fact that a transplant is NOT a cure.
If you are so against me, my behaviour and my campaign, then don't visit the websites or my blog, simple as that!
Thank you for your comments but I feel you have said enough and this should be the end of it.
Holly S
Holly no matter what Kate/James/Music (depending on what meds she is taking that day) says the fact is we support you and her arguments are very weak.
You know my brother was on dialysis for 18 years and just got his third transplant but in Kate’s eyes he is a freak of nature and not worthy of having a transplant.
Laura had a Heart/lung transplant at 4 then a kidney and now needs another lung transplant is she a freak too Kate for wanting to live?
The fact is Kate your life expectancy on dialysis is very short but post transplant at least you have a chance to live a full and normal life.
Holly we both know that Pam had her transplant for over 30 years and Bill 36 and still going strong but they too are freaks of nature in Kateland.
The fact is Kate is that statistics mean absolutely nothing to the individual and can be fudged to show whatever YOU want them to say. Just because the average life of a kidney is 8 years doesn’t mean that mine or Holly (x2) kidney will last any more or any less than 8 years but 8 years off dialysis and the terrible effects on your heart and body is better than nothing at all and is an insult to the memories of the people who died to give us that chance in life.
You claim that dialysis gives the same life expectancy of a cadaveric kidney yet can produce neither evidence nor medical papers that back up your claim. It is once again something you made up or the voice in your head told you are true. Why is a renal transplant less worthy than a heart, liver or lung transplant? By your reasoning no transplant patient has the right to life and should be just shoveled off into a dark black room to die without bothering the likes of you. Someone else had that idea, hmmm what was his name? Oh yes that’s right Hitler and his final solution, so where do you want us to report to?
I am more than aware there are different forms of dialysis, I guess you googled dialysis and actually did some research to drop that bombshell on us all. Who would have thought that all the time I was on PD/APD and my brother on Heamo that we were actually both doing ‘dialysis’ what a shock! I’m not sure how I am going to be able to get over that for some time.
You clearly don’t know much as yes I give you not every patient is on a fluid restriction but the majority are. You didn’t mention about the diet restriction but I guess you couldn’t be bothered to read down the page far enough to read that. What about the weekly epo injections that your body will eventually become immune to as the epo is not human but genetically modified hamster epo. Our immune systems eventually produce antibodies to that epo so we are left with few options but blood transfusions that will also increase the antibodies in our blood. Post transplant our kidneys produce our own real human epo and for once we are not anemic and are able to walk down the street without having to catch our breath every few steps.
You say you are against ignorance and misconception but your posts are full of inaccurate, scare mongering and simply false information for which you have no evidence to back it up.
Holly is more than aware of her mistakes and from that she has learned where she went wrong and how to improve her campaign. It’s just a shame you cannot learn from your mistakes, educate yourself and actually do something to help people.
FGSC - I don't care about how long your brother or your milkman lasted on dialysis. The fact remains that life expectancy on dialysis and of transplants on average is pitiful and more work needs to be done regarding them. Since you like assuming things I'll join in and assume your hysterics are because you LOVE the treatment of dialysis, and you think that there is no progress that needs to be made because people can live such wonderful, happy lives. If so - please continue to donate money to the cat's home rather than kidney research. They, like me, would like to improve the treatments of organ failure.
Not nice assuming things is it?
If you read my posts properly - you would understand that I did not give an exact date when Holly's organs would fail. I hope they don't. I hope she, like the people you mentioned, are abnormalities to the majority.
Here is the study to back up my claim about daily HD being comparable to a cadaveric kidney: http://www.ncbi.nlm.nih.gov/pubmed/18458034 . It is a bit of a "technical" article, so I don't expect you to understand it, so here is the key point: "Survival of patients dialyzing daily at home was similar to that of age-matched recipients of deceased donor renal transplants". Is the Oxford Journal of Nephrology Dialysis and Transplant a good enough source for you?
So much for the voices in my head telling me these things.
I think it would better for you if you did believe I was insane, because then you could deny what I'm saying and dismiss it. Unfortunately - accusing me of having auditory hallucinations won't void the underlying message. It must be like a glass of ice cold water in your face to realise this and face the predicament you watch your family suffer with.
I have never stated that a transplant recipient "does not deserve life" - only they should be informed of the risks. Telling them "its a happy ending" does not give them the full picture. Aren't I the one to allegedly suppose to have "voices in my head"? Reading things that aren't there are a sign of extreme paranoia. The stress must be affecting your coping abilities. I suggest you get help.
You also guessed wrong, I did not "google" dialysis, I am already informed. Ok - so I failed to mentioned a few of the many pills a dialysis patient has to take, I just didn't realize talking about anti hypertensive agents, phosphate binders, vitamin d supplementation, anti histamines, laxatives, anti depressants... (I'm bored of listing now) would make my argument more "valid". Apologies - next time I'll get out my copy of the BNF.
Holly - despite your flaws, I believe your underlying message is a good one. I just hope you take a note of my criticism and do something about it. If I have noted these things - other people have too.
You so called evidence:-
CONCLUSIONS: Survival of patients on short daily haemodialysis was 2-3 times better than that of matched three times weekly haemodialysis patients reported by the USRDS.
as I said produce some evidence as that is comparing daily nocturnal and 3 times weekly hemo dialysis. There is no comparison between survival of dialysis patients and transplant patients.
Those patients who died may have lived a further 8 years had they had a transplant or a further 30 years but as I said statistics mean nothing to the individual
tell you what Kate come on Kidney Patient Guide and we will all debate you and I promise we will listen to you as it is not fair to be hijacking hollys blog
http://kidneypatientguide.org.uk/newBB/viewforum.php?f=2&sid=2ed10d9699a861f945b36af4fff71cde
Oh dear seem to have found something from the same site that says the opposite of what yours said. Oh no what which one do we believe? Guess the study that was actually about survival of transplant versus dialysis patients rather than one comparing dialy dialysis and three times weekly eh Kate?
http://www.ncbi.nlm.nih.gov/pubmed/8360969
CONCLUSIONS--The overall mortality risk following renal transplantation was initially increased, but there was a long-term survival benefit compared with similar patients on dialysis. These analyses allow improved description of comparative mortality risks for dialysis and transplant patients and allow advising patients regarding comparative survival outcomes.
Kate, you will notice if you visit the Battlefront page now... there is no word of Happy Endings! Hope you are happy!
You have made your point, I have rectified it with blogs, changing the website and getting the point across on the programme that it is not a happy ending, but a happier part of my life.... not much more I can do!
Now I would appreciate it if you would leave it at that and if you wish to continue to debate do so on the Kidney Patient Guide following the link that FSGS has posted!
Thanks
Kate,
sounds to me like you (or someone you know) has had a transplant that's not gone according to plan and you've got some kind of big chip on your shoulder over it????
Do you propose we try encourage people to sign up to the organ donation register by telling them how terrible our lives will be if we receive an organ??
maybe i'm missing something but i wouldn't be rushing out to sign up after watching a programme of all the negatives.......i'd be more likely to agree to donate my organs after listening to holly's story and seeing how much her life has been improved by the gift she received.
i think you need to have a long hard look about why you are so against people being happy & positive about the organs they've been lucky enough to receive.......if it is down to your own personal bad experiences then i do sympathise with you, however, get over yourself and be happy for the others......!!!
Holly you shouldn't have to explain yourself. Kate made it very personal against you. Anyway I doubt she will surface on KPG as she knows she is wrong.
On a nicer subject well done on the programme today! Will watch it later when i get back from work
"I thought it would be worth mentioning that there are other forms of dialysis apart from thrice weekly in-centre hemodialysis - not all dialysis patients are on a fluid restriction, or even dialyze in hospital. Its important to correct you on this because this is yet ANOTHER renal misconception that people have. I'm sure you feel the same way when you hear "Isn't cystic fibrosis a white person's disease?" or "Won't that cough be gone by next week?"."
yes Kate, I know there are different types of dialysis, I have close friends who have undergone all of them indiviudally. I was referring to haemodialysis because that's what Holly had for several years. Those I know who have had peritoneal or overnight dialysis at home have found the experience no less unpleasant or restrictive though.
I don't think anyone minds debating these issues or hearing opinions from other people, the reason I suspect you have upset many people is that you argue your views in an extremely aggresive manner and make personal insults to people. Yes, some people are also guilty of arguing back to you in a similar vein - I'm not denying that - but had you expressed your thoughts and opinions in a more reasoned, calm way without making sweeping and totally false statements about the way cadaveric donors are treated or throwing insults as Holly and her family, then I think things would have turned out very differently.
From what I can understand, you feel angry that more research/money/energy is not spent on curing kidney disease and that instead the focus is on transplants? That's a very valid concern and I don't think anyone would have a problem with agreeing that it would be better to cure a disease without having to resort to dialysis/transplant in an ideal world.
But where we are now, the choices are (for kidney patients) transplant or permanent dialyis (for all long as they can survive on it and with a low quality of life) or a transplant. And for other organs the choice is more simple - life or death.
I'm genuinely trying to understand what you are so angry with about Holly raising awareness of how we can all save lives once we have died? Is it that you think she is giving false hope to prospective transplant patients despite the fact that their doctors will have spelt out all the potential negatives that can occur post-transplant before they give their consent. Or are you saying that she should be telling the public that if they donate their organs, the patient who chooses to receive them may have problems? I'm really confused by what is motivating you in spending a lot of time lambasting this campaign.
Hi Holly,
I don't even believe this person is for real. It sounds like either someone looking for a reaction & attention, or someone so stuck up in their own self pity they can't be happy for anyone else!
I watched the programme and thought you did fantastic (as did the prime minister, the 3,000+ people that joined the register, and probably 99% of the viewers that tunes in today!)
Kate - I don't understand the comment about eating chocolate or cheese? I had a transplant almost a year ago and my dr's and the renal dietician told me I could eat anything I wanted in moderation? Surely, they're the experts.
I strongly disagree with your opinion that just by eating chocolate Holly doesn't care about her transplant! there's no evidence this harms the kideny if eaten in moderation?
Holly has been given the gift of life and should be able to enjoy it & make the most of it! is she supposed to live on lettuce for the rest of her life? im sure if the donor was able to give an opinion they would like to see her happy and enjoying herself.
Keep up the good work holly x
Fantastic stuff Holly - well done.
L x
Kate- In addition to Emma's question, would you accept a transplant for a loved one I would like to know whether you would then call your loved one obese because their facial features had been affected by medication and they had gained some weight during recovery. I also wonder if you weren't able to give your loved one a kidney how would you feel? How would you feel if someone then implied that your loved one would be less well because of it? Please put yourself in the situation you have put Holly and her family in with your comments.
Kate you now claim to have experience but you still aren't willing to share your experience, why? Holly and countless others on that site have the courage to share details about their transplant experience. You responded to Holly sharing very personal experiences by criticising her, why shouldn't you volunteer the information of your experience? And until you do choose to should people believe you over people who have told us of their experiences and who we know have experienced transplants first hand?
When my sister had a transplant, life expectancy statistics and knowledge of the drug regime will have been told to her but were slightly overshadowed by the fact she would die without transplant. You talk of a cavalier attitude, I think your attitude towards transplant patients is extremely cavalier, you don't seem to understand how ill these people are pre transplant and that small side effects are nothing compared to the alternative.
Your statistics and sensible rationality are what suggests to me you have no personal experience of this, you have an extremely cold and calculating attitude towards a sensitive and emotional issue of life and death.
Charities do not gloss over the facts, they focus on the upsides and the positives and that is necessary to raise awareness. Not all cancer research adds focus on the likelyhood of relapses, funny that. I would love to see you run a successful charity campaign whilst constantly pointing out the negatives and downsides to everything you are promoting.
Recently a story Live Life has been in contact with sadly resulted in someone dying due to post transplant complications and you know what? The family are still campaigning to promote signing the register. Even people who know it's not a cure and know the facts usually still understand what a difference transplants can make and how important they are.
I'm with Emma, I don't mind debating the issue and I think it's good for people to know the facts. However I do think you have a slightly agressive need to criticise transplants that I don't understand that. I also don't think you've understood the impact of your comments on human emotions and I still think you are very cold about a sensitive issue.
Kate.....
I just think you need to get a life really.
Your entire point seems to be to put down another person, someone who has actually been self-motivated enough to stand up and do something proactive for something she believes in. You seem to invest your energies in spouting crap (and yes it is crap. I guarantee I have seen more real life affects of transplantation than you have ever read in any of your righteous statstical documents).
You disagree with Holly. You disagree with her campaign. Lovely, we've sorted that out.
None of your contributions are useful, are helpful, or have any intend of contributing positively to people. And now you are hijaking her blog. It's clearly a personal vendetta as holly is by no means the first person to campaign procatively for organ donation.
Now can you please piss off and do something more useful with your time than slagging off someone who in my opinion has contributed more to society than you ever will.
Here here! Couldn't agree more than with the comment above.
Although I don't have first hand experience of organ transplantation myself, I do have friends and family who have benefitted greatly. I am helping with a similar campaign to Holly's called "Register & Be a Lifesaver".
People will always take issue with such an emotive and controversial subject, that's fine - but to get so nasty and personal? What on earth is this person trying to do, make Holly ill? Give her a complex?
What an pointless, cruel, negative waste of time and effort!
Keep up the good work Holly - you have a huge amount of support out there! :-)
Charlotte xx (from Facebook!!!)
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