Getting there

[Jean]

Well, have been hanging around for 8 years and enjoying my stage 4. However that all changed yesterday, as my Crit is up and my GFR is down to 16. Still plenty of room, I am sure, but the fatigue is terrible and so is the nausea, altho not daily, but still a "bright" spot in my day. No possibility of a transplant, so that is it! To make life complete, I have a very bad back and after a series of 3 shots, it is worse, not better. So, with the latest attack of this, something happened to my right foot and now my left leg is protesting against all the weight it is carrying. So, even with a cane, I still have trouble getting around. I know you have all been thru this, and I am amazed at those of you who still continued to work and carry on with some normalcy. I am not looking for sympathy. Wait, maybe I am, or maybe a couple of atta girl's. Thanks for listening.

[galvo]

Atta girl x2, Jean! Sorry to hear about your woes. It looks like you may well be joining the D team shortly. Think about how it will be when the fatigue and nausea disappear, as they hopefully will do, when the big D starts working. Regard it as a rather weird hobby; that gets me through the day! Best wishes to you.

[Darthvadar]

Thinking of you, Jean...

Whatever your treatment, I hope you're feeling much better very soon... Mum found the nausea very difficult....

Love... Darth...

[Zach]

Dear Jean,

Seems like you and I have been through thick and thin, so to speak.
Sending you my love … and some luck. too!

--Zach
 

[Shaks24]

Jean, its been a bit over a year for me now. I have read a lot of your posts. You are a warrior. Stay strong and Atta Girl!

[kristina]

I am sorry to read about your situation, Jean and I do hope you still have lots of time to keep yourself pre-dialysis ...
I have noticed that the longer the pre-dialysis-stage goes on, the more ways have to be found to keep it a little bit longer pre-dialysis...
... especially with issues like fatigue and nausea... Fortunately the fatigue and nausea does not bother every single day...

I am in a similar situation like yourself and there are issues with haemoglobin and I have been a bit of a “needle phobic” all my life...
...I could not even really look at the needle when they took my blood, let alone thinking about handling it myself...
... But two weeks ago I was told that I need a haemoglobin-”shot”  once every week and I had the choice:
go every time to the hospital for it or learn how do it myself at home...
Well, I realized that the autumn-coughing-influenza-season was not worth for me to take the risk ...
... and go to the hospital once every week “only” for a haemoglobin-”shot” ... and after a few sleepless nights I decided,
that it is much safer for me to learn and "do it myself" at home.
Last Thursday I gave myself my first haemoglobin-”shot” at home for the very first time, all on my own...
...and it was not as terrible as I first thought... it just goes to show that the nearer we move towards dialysis,
the more we have to do to keep ourselves pre-dialysis for a little bit longer...
I have also become very careful and avoid “rush-hour” shopping times and also avoid rush-hour public transport.
I have noticed that first thing in the morning is the best time for me to shop,
because that is the time when only very few people are shopping...
... and then I give myself as many little treats as possible... mind you, I still keep strictly to my vegetarian kidney-friendly diet...
but I give myself special little treats like looking forward and going to a classical concert ...
...or I treat myself to a nice hot medical herbal bath with candle lights and my favourite music...
...or I go for interesting walks, either in a Park or, when it is raining, in a Museum etc.

I do hope, you still have lots of time to keep pre-dialysis and I wish you all the best...I do understand where you are coming from
and I send you my best wishes and good luck from Kristina.

[Jean]

Thanks so very much, all of you.

[kristina]

I do hope you can be pre-dialysis for a long time to come
and wish you good luck and all the best, Kristina.

[kristina]

P.S. My aim, my goal and my hope is, to remain pre-dialysis until at least February/March 2015...

Do you have similar aims,goals and hopes?

Best wishes from Kristina.

[Michael Murphy]

I too put off the day of dialysis for several years.  My nephrologist never thouht I would start.  The only thing I did was have my fistula installed two years before I started dialysis.  The fun thing when I showed up the first day was when they looked for the cath in my chest, I told them I had a fistula they then said it took months to mature. I asked how much longer than two years they just shook their heads and used the fistula.  I don't regret the years I delayed the start of dialysis.  When it was time I went and truthfully it was not as bad as I  thought it would be.  Though I must admit I don't look at the needles.  When I have seen them they look to be the size of the holland tunnel in New York. 

[obsidianom]

I too put off the day of dialysis for several years.  My nephrologist never thouht I would start.  The only thing I did was have my fistula installed two years before I started dialysis.  The fun thing when I showed up the first day was when they looked for the cath in my chest, I told them I had a fistula they then said it took months to mature. I asked how much longer than two years they just shook their heads and used the fistula.  I don't regret the years I delayed the start of dialysis.  When it was time I went and truthfully it was not as bad as I  thought it would be.  Though I must admit I don't look at the needles.  When I have seen them they look to be the size of the holland tunnel in New York.

The American way, wait too long for the fistula and start dialysis on a catheter. You did the right thing and they dont get it. In the US we have far too many start on dangerous catheters because the nephrologists wait too long to get patients ready for dialysis . Then its a sudden rush at the end and on a catheter. You would think these clinics would know better.

[kristina]

I have noticed and I have been tole by doctors,
that the most important point whilst remaining pre-dialysis
is to keep as fit and healthy as possible...
I keep myself very fit and keep strictly to a very healthy vegetarian diet
and today for example I walked over six miles to keep as fit as possible...
I go for my daily walk every day of the year...

[MooseMom]

I am more than happy to offer some tea and sympathy AND as many "atta girls" as you need.

After being happy at Stage 4 for so many years and then suddenly learning you're closer now to Stage 5, well, that's a lot to handle.     I'm rooting for you! 

[Jean]

Thanks again guys. So good to hear from you Zach. Neglected to mention my other joyful situation, my bad back was treated in pain management and the treatments didn't work, so the chronic pain continues, then I somehow hurt my right foot,so, cannot step on the heel. Went to Urgent care and they found nothing wrong. Still, the right heel hurts terribly, so I no longer wear shoes. From trying to take my weight off my right foot, the shin muscle is painful also, on the left leg. GOOD GRIEF!!! But, hey, had my cholesterol checked and my bad cholesterol came up negative!!! So, all is not lost. Thanks for all your kind comments.