Hello hello, haven’t been here for a while..
Whats happening?..well dialysis is still a struggle (nothing new there!) no two days are ever the same. If an ‘ok day’ could be had two days on the trot, I’d be laughing! Plummeting Bp and flaking out..yay go me! 🙁 Anyone else encounter that!? Wobbly legs after dialysis..having to be pushed in a wheelchair to the scales and out to the car – embarrassing but a necessity -not every session, but still. Yesterday, however..was an ok day..I’m shocked, but still slept all afternoon. Can’t shake being absolutely shattered after my date with Dai..I can sleep for Wales! Today I feel fine, could run a marathon..yeah right LOL
Two more tests coming up..echo cardio, done a while back but a routine repeat I think/hope. Is it normal to have repeats of this one? Also the cardio stress test! Aaaargh me on a treadmill..Gawd help! Can hardly walk a straight line for very far! Worried about this. Yes, I’m a scaredy pants over everything! What’s it like..or shouldn’t I ask?
Still have a small amount of weight to lose, then if everything is ok with the above tests, it’s our referral to the surgeons! No dates as yet obviously, but it is getting ever closer! Mixed feelings about it..on one hand I can’t carry on on dialysis but the other can’t stop worrying about all I’ll be putting Lee through Too. Bit messed up really..
Any positive words would work wonders right now. Struggling just a little bit xx
Good luck with the tests Ann, you’ve done amazingly well so far. There’s a fantastic prize at the end of all this 🙂
Hiya Rob and thanks for all this. Certainly hope so..a replacement kidney, possibly pancreas and a new start to life again! 🙂
Thank you Ann for allowing us to share you story. I’m lost in admiration for what you’ve done in the past year, it was never going to be easy but the finishing line is in sight 🙂
Hi Ann.
I can totally understand all the anxieties and worries and believe you me they are definitely normal.
Your spot on, dialysis is not an easy ride and one of the hardest things we will ever have to do. My first few years on HD were terrible and I used to pass out, vomit and all sorts. I don’t remember having good sessions. Then it seems my body kind of got used it . I had more OK days. The trouble was I would have HD one day and feel so rough after, light headed, cramps and could not sleep but was shattered. Then the next day would be spent getting over that session and by the next day I was feeling okish apart from I was usually fluid overloaded. Trouble was I would be due dialysis again so back to square one. I used to have repeat echo cardios and don’t quote me but when waiting for a transplant they have to keep an eye on everything to make sure you are still ok for the op. I think one of the most common problems that can occur is LVH but it takes time for that happen and they can still operate unless severe anyway. I have never had the stress test but the way I would look at it is you can only do what you are capable of. This is all to make sure that your heart is strong enough to cope with the op and see it is a good thing that they want the best for you : )
So next step will be the surgeons and that bit is easy once your tests have all passed. Dialysis gets us through life up until this point hopefully (for those who can be transplanted of course) so do not worry about meeting the surgeons and before you know it you will get a date. Is it your partner who is giving you your lovely gift? If so you are bound to worry as your human and hold this person dear. The success rates are amazing and they will not operate unless everything is spot on. Try to think of what your future could be like without going to dreaded dialysis and use that as your focus. If you need to chat about anything please feel free to contact me. Wishing you all the best and will follow your posts if you can keep us updated. Best wishes Lisa.x
Hi 🙂 everything you say about dialysis is me..the fainting (only recently) but all the other stuff too. Dare I say it last week has been an Ok week, bar the banging headaches! Yes, Lee is my husband..amazing, scared for him, only natural to worry.
I’ll do updates as and when, some a bit loopy lol
Thanks for replying, Ann x
Hi Ann It is normal to have repeat tests. When I was on the list I had repeat Echos, ECG every year. I remember doing to treadmill. I lasted only a few minutes then breathless & weak legs, oh and laughing. Pathetic. Lol Rest assured these surgeons are the top of their game & are marvellous. It is a marvellous gift your partner is giving you as a living donor transplant statistically is meant to last longer than a cadaver. Good luck & hope all goes well with your tests.
Hi 🙂 your treadmill test sounds a lot like mine will be lol goodness help me lol Thank you x
Hi Ann, best wishes for your Transplants and your admission today at MRI. Don’t you be worrying, the Staff will really look after you after the Operation. Good luck with everything, and not forgetting the fantastic Gift that Lee is affording to you. We are all thinking about you both – particularly today/tomorrow. Kind Regards, Steve xxx
Thank you 🙂 x
Hi Anne,
I hope all goes well with the appointments and that you get a lot more good D days than bad. I can totally sympathise with you in relation to your feelings for Lee. I got my tx from my brother who is older than me, but still in early 30’s.
All i had to do was remember what he told me “that I want to give it to you, that i love youe, and that I am doing this so have the life back you had before”. At this point, we both started crying, as did my mum and wife (then partner) how could i say no to that
The weight should be falling off knowing you have a pending date booked in for the tx. Let me know if you would like some help / advice / recipe’s to support you with this. I am here to help in an way i can.
Joseph
Aww gawd I was nearly crying when I read that then! Weird feeling of that special gift isn’t it! Thank you, no transplant date just more tests, but everything crossed it will be this year! The weight thing is a bugger..I’m also diabetic so can’t not eat to lose it..nealy 3st list, so very nearly there 🙂 Thank you