Monday, 11 May 2009

The downsides to transplants and campaigning,...

When I got myself into campaigning I knew it wasn't going to be all plain sailing I also knew that undergoing a transplant wasn't going to be a piece of cake either!

I usually like to keep this blog positive and upbeat but I am warning you now this will be far from that... in fact it will probably turn into a bit of a moan, but I am hoping it will help me, and maybe some people out there understand a bit better!

Ok so the downsides to campaigning....

  • It's stressful
  • Things don't always go your way
  • Other things move down your list of priorities - I didn't have much me time when the filming took place
  • Putting yourself out there in the public domain is not always a good thing
  • People don't always agree with what you are doing
  • People aren't worried about criticising you personally or your family

Ok so the last one on this list has been bugging me quite a lot recently...

I have had some comments on my Battlefront page which have been negative and in fact hurtful... someone even went far enough to say that they would be disgusted if I had received their sons Kidney when he died. Other comments included that I shouldn't be misleading people about my campaign saying that it is a happy ending when its not, then there are people saying I am obese, and then criticisms of my family for not donating their kidney to me. All of which cheered me up no-end as you can imagine!

So I don't feel the need to explain myself, as someone very close to me would say "This is my life and I choose to love it!" but I am going to explain a bit more about my kidney transplant in the hope it will answer some of the queries above. In simple terms...

Yes, I have had a kidney transplant
No, this isn't a cure
Yes, I will always have Kidney disease
Yes, I will probably need to go on dialysis again in the future
Yes, If I am lucky I may receive another transplant.
Yes, My parents both got tested to become donors for me, they weren't suitable due to medical reasons

Yes, the anti-rejection tablets do have side effects
Yes, I suffer with some side effects...

I am loosing some of my hair (it is getting thinner by the day)
I often get shaky hands
I get burning sensations in my hands and feet
I sometimes have night sweats
I still can't walk a great distances as one of the tablets I am on causes my knee to swell
I have a moonface - due to the steroids
The anti rejection drugs mean I am at a higher risk of cancer - specifically skin cancer.

Yes, I have put on weight - I am the first to admit this
Yes, this is not all down to the steroids - But they do play a part.
Yes, I have been over indulging, but wouldn't you if you had to stick to a strict renal diet for four years?
No, I don't intend to do this forever.
Yes, I intend to get fit and eat more healthily, not because of the nasty comments, but for me and the longevity of my kidney!
No, I have never been, and never will be stick thin... DEAL WITH IT


Yes, this kidney transplant has transformed my life and the life of my family
Yes, I think this is a happy ending, I am the happiest I have been in ages - I am grateful for every single day I have been given off dialysis, even if the transplant only lasts a few years.
No, I don't intend to dwell on this any longer than it takes me to write this blog
Yes, The side effects of the tablets are a small price to pay for a happy and healthy future free from dialysis and the restrictions that come with it.


Some peoples comments do put doubts in my mind about whether I am doing the right thing putting my self out there for criticism, but I passionately believe in this cause and I am not going to let it stop me.

This is my second chance, I am going to live life to the full, I am determined to use my new found freedom to raise awareness of Organ Donation, the need for more organ donors and promote the plight of the people still on the transplant waiting list...

Tomorrows blog will be a more postivie one, I promise.... I intend to make it a complete opposite one to this one...

The benefits of transplantation and the positive aspects of campaigning... of which I can assure you there are many!

13 comments:

Alice said...

Hey Holly! Hope you feel less "down" soon! Luckily I know you won't let it get you down for long... a positive about tx... it makes you stronger! Had to comment on the hair thing... my hair fell out like CRAZY 3 months after tx... I was pretty upset about it! BUT, then it started growing back thicker... I now have thicker hair than I've ever had!!! Yours will be the same!

craftyclaire said...

DO NOT allow people to judge you or stop you from grabbing this chance at a new life. I am alway in awe of the respect which you have for your donor and their family. Try to see the positive of their negativity - it will help you decide if you are cut out for campaigning as you career or if you want to keep it as a smaller part of your life.
Good luck with whatever you do and keep positive.

Holly said...

The people (or person...) that have been saying all these mean things clearly have no life of their own! and are jealous of your happiness and success. since my transplant my hair has got thinner, i have night sweats, ive put on weight, i'm a lot more sensitive to hot and cold, i'm more likely to get cancer but would i swop any of it for more time on dialysis???? nooooooo! every day i wake up and thank my wonderful donor, Oli for my new life. Yay for Holly and her amazing campaign!!! xxx

Anonymous said...

Hi Holly! Don't let these silly comments get you down.You know you are doing a fantastic job in promoting organ donation.You also know that your dad and I are EXTREMELY proud of you and support you in everything you are doing.We know how much you appreciate your gift of life and the generosity of your donor's family.Keep up the good work!

Sarah Milne said...

Fantastic blog Holly. You don't have to justify anything. You are doing a fantastic job!!!! x x x x

Aunty P said...

You rock! Well said. You are inspiring and positive and a credit to your donor.and your parents are amazing too
much love
xxxx

Jac said...

Well said Holly! Keep at it - you are doing an amazing job!!

Molly said...

Very well said Holly.

Like you, I have had side effects of the anti-rejection medications and steroids that I now have to take for life to protect my new organs - hair thinning, shaking from the tac, heightened sensitivity to hot and cold etc. And I did have a moon face from the steroids, but that's gone as the steroids have reduced and yours will too. My hair is beginning to thicken again now, and I'm sure yours will as well given time. But like the other Holly said, I'm happy to put up with these minor side effects as I know that without my transplant I wouldn't still be alive now.

I think all the campaigning you are doing is amazing Holly and you're such an inspiration. So keep up the good work and ignore those narrow minded people who give you hurtful comments. They're not worth it.

Hugs,
Moll x x

loulou said...

Hun, I can't believe peeps can be so unkind. They just jealous of ur special spirit and drive. You are so determined to be a voice for others. Those that literally can't speak due to shortness of breath, hospitalization, helplessness...
O I totally know what you mean bout the side effects...i can mostly ignore them but sometimes...grrrr!!!
You are amazing...when I get bad times and stuck in hosp it always cheers me up to hear wot lovely things you've been doing. You're an inspiration!!! Mwoah xxx

loulou said...

Hun, I can't believe peeps can be so unkind. They just jealous of ur special spirit and drive. You are so determined to be a voice for others. Those that literally can't speak due to shortness of breath, hospitalization, helplessness...
O I totally know what you mean bout the side effects...i can mostly ignore them but sometimes...grrrr!!!
You are amazing...when I get bad times and stuck in hosp it always cheers me up to hear wot lovely things you've been doing. You're an inspiration!!! Mwoah xxx

Emmie said...

Brilliantly put Holz! Not that you should have to justify every detail of your personal or family life at all! Sadly the few nasty, negative comments can really hurt and stick in your mind far longer than the millions of supportive ones. But you KNOW how many of us are behind you every step of the way. Please don't burn yourself out with the campaigning, you are doing AMAZING work but you need space and time to relax and enjoy your new life too. Look after yourself babes, you're fab! xxx

Emmie said...

P.S: Just for the record I would feel lucky, priveleged and very fortunate if I or anyone I care about had ended up donating their kidney to someone who appreciates it and cares for it as much as you do! xxx

Sahmnsays said...

Your blog is an encouragement to me. I just recently got on our country's waiting list and every now and then am bombarded with doubts. However, I have to constantly remind myself that the benefits of a transplan far outweighs dialysis any ole' day:) I totally agree with you on that. And thank you for being honest about all that entails a transplant.