Hi All

It's a while since I posted to the blog so whilst I'm up and awake I might as well add a little!

Life has been very up and down over recent weeks. Three months + of living with a serious illness has become pretty draining and takes its toll on family life; I've almost forgotten what it was like to live without a breathing problem! It's intense and worrying and trying to keep my spirits up for the sake of everyone else is demanding to say the least. But we do it, don't we?

I am now finally on maximum doses of the two heart meds but improvement is negligible and not in proprortion to the number of pills I pop each day . At least once a week I'm having to increase the diuretic I'm taking in order to clear the fluid that is building up which the heart is failing to disperse. It has been suggested that further medication may be needed to help with this, was really hoping this wouldn't be needed. Keep thinking if I follow instructions all will be well but it's not like a bad joint that can be calmed with a cold pack, extra pain relief or a splint. Seems I literally have to sit ... wait ... see. Off to see the Cardiologist next week so will see what that brings.

In the meantime I thought I'd better move onto the next medical issue awaiting attention Had to prioritise and decided that going blind was less of a problem than being unable to breathe! So after months of failing vision I finally made it to the optician. After only a brief examination he diagnosed clouding of the lens capsule in both eyes. Apparently quite common following lens replacement (done 4 years ago to replace lenses damaged by RA) but requires surgery to fix it! Still, a bit of surgery has to be an improvement on going blind!

I guess I should go back to bed and get some sleep before the night is gone and the day dawns. Some shut-eye would be most welcome

Lyn xx

Hello Lyn

Not been posting much because I have my grandchildren here at the moment but have popped on a few times to try to keep up with things. Have always looked to see if there is anything from you because I do think of you often and wonder how you are getting on. Just read your last post and it seems like things are not much better for you at the moment, it must be such a worry for you and your family.

See there was another medical problem for you to deal with regarding your eyes, at least you now know that it is something that can be fixed so that must be a relief for you.

Not be long now till the 1st of August, at least then hopefully you should have some answers and have a clear picture of whats what.

Sending you much love.

Paula xx

Hi Lyn,

So sorry to hear you are now having eye problems.
Will you have to wait long for the op?
One thing after another for you.

Love Doreen xx

Dear Lyn.
you seem to be being bombarded with terrible health issues....as if RA wasn't enough to deal with on its own. I'm glad you are being seen by the consultant again soon. It's situations like this that make me really grateful, and proud, to know that our NHS is there to step in and help. I'm thinking about you a lot and keeping my fingers crossed that things will start looking up for you. Keep us posted on your developments. Love Naomi.

Hello Night Owl,
Thanks for all your geeing us up when you are prepared to share you own problems
The laser treatment for your eyes is fairly routine as you say. Hope it goes as well as
mine did in 1996. Blimey, didn't realise it was that long ago!. I will be very interested
in the answers you get from cardiologist. I have been kept on Enbrel but had to stop
Diclophenac and other similar drugs of that family. It has taken a while to get adequate
pain control since. Is this a result of long term RA or the treatment we got 20 to30
years ago? Take care Anne

I hope your appointment went well today Lyn. I've been thinking about you today and hoping for the best for you, X

Thank you for your posts and thoughtful comments, always much appreciated

My week didn't start well with an unexpected emergency trip to the dentist! Woke up with unexplained sensitivity which was a little disconcerting. Managed to get in with the dentist same day who announced, after X-Ray, that the back wisdom tooth has root decay and needs extracting and a tooth that is crowned needs root canal filling. So, good news and a big bill there then!! Came home with Amoxycillin for infection. Great, yet more meds! The extraction will have to be done in hospital because of my now complex medical conditions and root work can't be done until mid-September!! Good grief I was only there 2 weeks ago for a check up when all was declared okay!!

The cardiologist is a very nice, friendly lady who seems well researched and knowledgeable about her subject. I was impressed (that takes a lot of doing these days!). She feels that the Cardiomyopathy is unlikely to be RA related, suggested by evidence from the heart scans. This is good news apparently as the two problems can be kept separate and treated individually. She feels that the problem could have arisen from either a virus that attacked the heart or a period of higher than normal blood pressure that wasn't adequately controlled. She has added in further medication which hopefully will help with symptoms of breathlessness and fatigue. Being realistic I have to accept that I will not be 'cured' of the heart problem; I have big problems not least with the output from the left vetricle which is only one third of normal capacity. The valves are okay with the exception of one which is misaligned and not closing properly because of the dilated ventricle. Not too concerned about this for now as that could change with time. The prognosis is optimistic and with effective treatment I should be significantly better than I am now. All this is going require a great deal of patience on my part, something I'm not particularly known for, however ... ... needs must! Next week CT Angiogram to hopefully rule out coronary artery disease; fingers crossed!

In the meantime I must ponder over Abatacept or Tocilizumab. Joints are a mess, now I do know where the inflammation is ... everywhere!!!

Thank you for all your support guys at this difficult time

Lyn xx

Thanks for posting so quickly after your appointment. We have All been
keeping fingers crossed for you. So glad you had a good hearing and was listened to.
It does take time to get heads around new information.
Take extra care Get the chainsaw oiled (or whatever you have to do with it)
Thanks again Anne

Hi Lyn - glad you have something definite to work with re the heart problem and that the cons't impressed you (I'm learning that's a bonus and not guarenteed!)! Shame about the teeth but I guess that's just normal life getting mixed up with everything else - at least you'll be in the best of hands in hospital.

You sound a bit more optimistic and I hope you're feeling a bit brighter. Good luck with it all

Sylvia xx