How Do I Feel?
Well, it is a few days since my Hospital appointment with my consultant. I still feel quite positive.
So far depression has not kicked in as such but I would be telling lies if I said that in the back of my mind I am not thinking about what I was told and what else I have found out regarding my condition.
It doesn't help when you see a progress chart of how you are deteriorating and how fortunate you have been for many years and then things change quite quickly, to be told that the treatment that usually works is perhaps not working and that due to the side effects a discussion may be coming soon where it may mean increasing the dosage or possibly having treatment removed altogether and letting the condition run it's course as the treatment may be worse than the condition.
And though you have to eat a healthy diet at the same time as the condition gets worse your body will not be able to get rid of the toxins. That at some point sooner or hopefully later you are heading for dialysis or transplant(if you are a suitable candidate)or even offered either of these options.
Who could put such thoughts out of your mind? I put out some feelers to see if anyone else had any experiences regarding my symptoms and I realise we are all different...what came back was the following...
"Creatinine was the main marker that was used and once it started pushing the 1000 mark you were introduced to the renal dialysis ward. Nowadays they are able to use other markers and your estimated glomerular filtration rate (eGFR) is a better marker than just creatinine. This is gained by using blood results amongst other things and is given as a % of what your kidneys are working at. Once you know your eGFR you will be able to gain better knowledge of how close to dialysis you are, as ESRF falls into 5 stages, and the possible steps you can take to slow down or stop this progression such as limiting salt intake and helping your kidneys with the type of foods you eat, but you would need to take advice on this."
I have not had reason to ask such questions of my consultant and maybe I will have to consider doing so but to some extent ignorance has been bliss. Perhaps I don't want to know...
I remember many, many years ago a Dr examined me and said that I was well even though my Consultant and own Dr saw things differently. It took another examination with another Dr who was fair and when she discussed my condition used the expression that it was like having the Sword Of Damocles hanging over me.
I knew of the expression but not really what it meant at the time but the tale is that a sword was hung above him held by a single horse hair whilst he was enjoying a banquet, in his case he envied power and privilege. The sword hanging above his head was to show him how precarious seeking this is and how things can change so quickly.
Life can be going along seemingly smoothly and without any problem and suddenly something often unforeseen can come along and change everything. Of course I am bound to feel this way when it is only a few days since being told this and the information starts to sink in. I hope as it does I can find more good things about the situation and be more accepting.
So far depression has not kicked in as such but I would be telling lies if I said that in the back of my mind I am not thinking about what I was told and what else I have found out regarding my condition.
It doesn't help when you see a progress chart of how you are deteriorating and how fortunate you have been for many years and then things change quite quickly, to be told that the treatment that usually works is perhaps not working and that due to the side effects a discussion may be coming soon where it may mean increasing the dosage or possibly having treatment removed altogether and letting the condition run it's course as the treatment may be worse than the condition.
And though you have to eat a healthy diet at the same time as the condition gets worse your body will not be able to get rid of the toxins. That at some point sooner or hopefully later you are heading for dialysis or transplant(if you are a suitable candidate)or even offered either of these options.
Who could put such thoughts out of your mind? I put out some feelers to see if anyone else had any experiences regarding my symptoms and I realise we are all different...what came back was the following...
"Creatinine was the main marker that was used and once it started pushing the 1000 mark you were introduced to the renal dialysis ward. Nowadays they are able to use other markers and your estimated glomerular filtration rate (eGFR) is a better marker than just creatinine. This is gained by using blood results amongst other things and is given as a % of what your kidneys are working at. Once you know your eGFR you will be able to gain better knowledge of how close to dialysis you are, as ESRF falls into 5 stages, and the possible steps you can take to slow down or stop this progression such as limiting salt intake and helping your kidneys with the type of foods you eat, but you would need to take advice on this."
I have not had reason to ask such questions of my consultant and maybe I will have to consider doing so but to some extent ignorance has been bliss. Perhaps I don't want to know...
I remember many, many years ago a Dr examined me and said that I was well even though my Consultant and own Dr saw things differently. It took another examination with another Dr who was fair and when she discussed my condition used the expression that it was like having the Sword Of Damocles hanging over me.
I knew of the expression but not really what it meant at the time but the tale is that a sword was hung above him held by a single horse hair whilst he was enjoying a banquet, in his case he envied power and privilege. The sword hanging above his head was to show him how precarious seeking this is and how things can change so quickly.
Life can be going along seemingly smoothly and without any problem and suddenly something often unforeseen can come along and change everything. Of course I am bound to feel this way when it is only a few days since being told this and the information starts to sink in. I hope as it does I can find more good things about the situation and be more accepting.
posted by The Great Gildersleeve | 3:46 pm
6 Comments:
I'm not quite sure what to say in reply, Gildy, other than: don't give up hope.
If/when you do have a difficult conversation with your doctors, I'd suggest getting a second opinion before you decide how to proceed. Doctors can and do reach different conclusions about the same condition.
I agree with you North Star, I hope it is a long way off...it is a conversation stopper isn't it.
Don't worry I will talk of other things I am sure.
I agree with Northstar only to differ in that I would say get MORE than a second opinion. When things are so finely balanced even 2 differing opinions aren't enough. A third and/or fourth coming down on one side or the other tend to add a lot as far as peace of mind goes...and it seems that may be necessary!
Another thing...and this is a GROSS generalisation...if increasing the dose is all they think may work then change treatment/stop it and try another tack!
re the sword...not so appropriate as it referred to someone who wanted the power/glory/trappings/wealth and was envious of it but when granted what he wanted he turned it down as soon as he realised what it entailed i.e. a constant fear of danger/anything at all times.
Thanks for the information about the fable Span...
I agree with what you say but if I thought the treatment may work I would consider taking a stronger dose with all the side effects(weight gain and a change in moods)
You become very grumpy and a bit shouty...
so...like a football fan then?
;-)
I wish :-)
The weight I can sort of accept but they alter your mood so you fly off the handle easily and can be quite nasty but its over very quickly.
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