Intro to Scarlet

[Scarlet]

Hi I'm Scarlet. I will try and keep this post short.

I am 42, soon to be 43 in December. I am third generation PKD, it has already claimed my Grandfather ~18 years ago, and my mother signed her self off 3 years ago and died two days later.

I was the one in the family that all the doctors said should be fine until I am late fifties or sixties.....suprise. I am at 22% GFR and dropping fast.

I am a Colon cancer survivor, 12 years and counting. I have spinal nerve damage from a fall and made worse by the radiation, as well as the inability to have children.  I am remarried, to the best man in the world.   I still can not believe that I can live in a world in which my mother no longer exists.

I found out in April that my GFR was at 29% and we have watched it drop every month since.  My neph says that I can expect to start dialysis by mid next year.

I need a place that I can rant and rave and cry at my perceived injustice in the world, and a place where people REALLY understand what I am saying, not just sympathizing with me.

I am scared, I am angry and I want someone to wake me up and tell me this is all a nightmare!   I have the most incredible phobia of needles and I already feel like crap.  I am tired and I no longer find anything in common with my friends and have stopped see just about everyone.  They all want me to be positive and the "everything will be OK"  IT IS NOT OK AND THEY HAVE NO IDEA WHAT THEY ARE TALKING ABOUT

I am tired and I am only getting started on the journey to hell.....and I want to make it stop.   How do you face everyday, when you feel like you are all alone.  I miss my mom so much right now I can hardly breath.

I just need someone who really gets it and does not always tell me to be positive and that "your numbers are still good, maybe they will not drop anymore"

Sorry it has not bee a very good month for me, just feeling very alone.

[peleroja]

Welcome to the group, Scarlet.  Lots of good information and friends here.  We've all been there, done that.  Glad you joined!

[boswife]

  to you scarlet..  Im so glad you found your way here.  Sorry you had to, but im hoping it's going to help you so much feeling how not alone you are.   Im caregiver for my hubby, and we too felt like it was the end of the world.  Now, after a bit over a year, and this wonderful board, we're feeling this to be just another part of our lives and not near the fear we once had.  Im sure you'll find some peace with it once you meet some of these amazing people and read their stories. I hope you'll get the 'healing' effect like we did.
ps..Im so sorry for you missing your mom.  Im very fresh in that dept as i just lost mine in sept this year.  It hurts like nothing else.

[chook]

  Scarlet. I have PKD and lost my Dad to it as he did not really cope well with haemodialysis. He was only 62 when he died and my Mum was his carer and is still going strong at almost 90. I can't imagine life without my Mum.  I watched my numbers slowly decline for the past four years or so and am now on peritoneal dialysis and going fine. I too dreaded the thought of haemo but IHD has helped a bit with that phobia and I can now contemplate it without such a feeling of terror. One word of advice, if I may....don't waste your remaining time pre-dialysis worrying/fearing what's coming. The steady decline with PKD is usually inevitable as well as unpredictable so arm yourself with knowledge - IHD is an excellent place for that. I have found the reality of life with D is not the horror I imagined. Yes, it's no fun and limiting and a hassle, but better than I thought. I hope it is the same for you. I feel I've been where you are now, although of course I can't understand fully how you feel. Here's another  - hope it helps!

[galvo]

G'day Scarlet and  . As you have doubtless already realised, you've arrived at the right place here.

[RichardMEL]

Scarlett Johanson here?!?! Who would have thunk it?!!

G'day & Welcome Scarlett.

 

*hugs* for you!! It's not a good place you are in now - so I'm glad you've come to our little community to hopefully help you out, or at least give you a place to vent, share your fears and frustrations, and hopefully find a way to come to terms with where you are at and where you're going.

You didn't mention in your post, but do you think you might still be viable for a transplant - given your colon issues, radiation etc? I certainly hope so as that would give you a goal to work towards.

I liked chook's suggestion - try to not focus on the whatif's and when's and so on of your decline. You know it is coming.. the when will sort itself out in due course - it may be mid next year, or it may be further away than that (hopefully!). What I would do now is *live life!!* get out there and *do things* YOU (and your hubby) want to do. spend quality time etc. Please don't read that as me saying "everything's coming to an end so do stuff now" - I just mean that you need to recognise that things will change as you head further down the CKD path, and while you can you should do things like travelling and enjoying life's little pleasures (like chocolate!!  ) before it may become more restricted/harder to do.

Stressing about what will happen won't do your kidney function any favours - rising bp and so on could cause more damage, which is the last thing you want.

One last thought is, regarding your grief about your mom, is that I humbly suggest you should try and see a professional counsellor or psycologist to try and help you work through these issues. I know nothing can replace your mom and that feeling of loss is so heavy, but it's also going to impact on how you view life and where you're at - and I'm sure she wouldn't want that. I hope you can seek some help to work through some of this stuff. It will also help your kidneys too I believe.

Again, it's good to have you with us. Many of us can relate to where you're at and what you're going through in one way or another (I myself lost my mother nearly five years ago).

 
 

RichardMEL, Moderator

[Jean]

What Richard said!!!! He is spot on, and we all appreciate it. You have come to the right place for any and all info you may need. All of us have felt like you at one time or another. I feel like that right about now. I am GFR of 24, and am amazed, at it was 29 three years ago. I just hate going to see the neph tho, cus I am always sure this is the day when he will say, now its time to start planning. I am not saying, " it will all be okay", but it will in time become acceptable, or as we like to say the " new normal".You are not alone,and I am glad you found us and     to IHD.

[Scarlet]

Thanks to everyone for the warm welcome and understanding. I was having a very bad day yesterday and you have all helped already.  I am very glad that I found this site!  You all KNOW how I feel and if you can tell me that it will get, if not "better" then at least livable then that gives me hope that I too can do this.   I do really wish that they could do D with out the giant needles though! 

The week before my mom died, her and I went out for dinner and she said something that night has stayed with me;

" I have done some things that I am not proud of, and some things that I probably shouldn't have, I have made mistakes, but I'll make no appolgies for who I am, would not change a thing, and had one hell of a good time doing it all" 
I think that you really can not ask for more then that.  My husband and I have started to plan vacations that we had thought that we would take after we retired.

As for RichardMEL's question re transplant, I do not know as of yet. I see the doctors in December again and they said that they will start the assesment at that time. I hope I am, not sure what I will do or how I will feel if I am not able ...

[MooseMom]

You know that advice about enjoying the time you have left before you have to start the inevitable D?  It's great advice, but how many of us can really live by it?  I know I haven't been able to.  I try very hard to be happy and appreciate every day I am not on D, but it is very hard to ignore the feelings of fear and just plain resentment at the injustice of it all.  It is all just so very pointless.  Knowing that you have this huge, immovable obstacle you are going to have to face, marring your future...well, it just makes me rage all the more.  The rage may be pointless, but it is there and it cannot be ignored.  All you can do is recognize it, acknowledge it, accept it as being part of the grieving process, and then get on with doing what you have to do to prepare yourself.

I know that I often feel that there just IS no future.  I hate talking about plans, about retirement because I just can't see life past D.  But then I look at the people here on IHD who somehow manage to live enjoyable lives, and it reminds me that it IS possible to live with dialysis.

I recognize me in you and you in me.  There will come a time when things WILL be OK, but that time is not now.  Not really.  There will come a time when you will be able to reclaim a normal life with your friends and with interests other than D.  Right now, the prospect of D is filling your life, and that is understandable, but it is temporary.  There will come a time when the rage and the fear will burn itself out and clear thinking will re-establish its position in your life.  Until then, just hang on tight and be patient and gentle with yourself.  IHD is the very best place for support, so take advantage of our resources.  We understand.

BTW, I lost my mom over the summer.  She had been on D for five years; her kidney function was destroyed after surgery for an aortic aneurysm.  I understand your loss and am so sorry.  It makes a difficult situation even more difficult. 

[VintageVera]

DEAR SCARLET: You have had a very hard time and it's OK to be angry and upset. I know I still am (started peritoneal dialysis in May). And yes, I've lost family members too and currently have 3 other cousins with my same disease. My cousin Carol Jean helps me a lot in dealing with ESRD. "Sometimes you have to take it moment by moment," she tells me and so I do. I got very sick when my kidneys were failing so I actually feel better on dialysis and my days are my own because I hook up to the cycler at night. So I am trying to say that it does get better, although it's hard to see right now, I know. We're all here for you. LOVE, VERA

[RichardMEL]

You know that advice about enjoying the time you have left before you have to start the inevitable D?  It's great advice, but how many of us can really live by it?  I know I haven't been able to.  I try very hard to be happy and appreciate every day I am not on D, but it is very hard to ignore the feelings of fear and just plain resentment at the injustice of it all.  It is all just so very pointless.  Knowing that you have this huge, immovable obstacle you are going to have to face, marring your future...well, it just makes me rage all the more.  The rage may be pointless, but it is there and it cannot be ignored.  All you can do is recognize it, acknowledge it, accept it as being part of the grieving process, and then get on with doing what you have to do to prepare yourself.

I can only speak for myself, but since I dole out the advice I should explain what I did prior to D.

I had a lot of time to prepare (13 years as it turned out) so it did take time, but I got into a place where I realised that rather than trying to deal with stuff I couldn't change about my situation that it was best to try and make the most of it. I went to Russia (amazing) and did a tour there, met up with friends and saw some concerts in St. Petersburg. I visited another friend in Germany and got driven along the Rhine in a convertable. I spent countless trips going to the US, Canada, all over to meet friends and experience other places. Yes, I spent more money than perhaps I should at the time, but I felt it was important since I knew such activities would be far more limited when I was on D. I once flew to London for 18 hours for a concert (yes, it was way more time on planes to get there - but it was business class, so thats ok ). It became very much a mantra of if there's an opportunity then take it - you may never get another opportunity.

Prior to being diagnosed I was much more conservative and I probably wouldn't have done some of the things I did later... but in a way I think having this disease changed me for the better in that respect. I've tried to focus on what's important. Not sweat the small things and just try and make the most of what there is.

Having written all that I'm not going to make out that I haven't felt those feelings of rage and despair that we've all felt. Every day has not been easy. Whenever I start to feel like that I try to remind myself though that curling up in a ball won't help anyone - specially me. I can't change much about my medical situation apart from the things I can influence(eg: diet) but really whatever happens is mostly out of my hands. I try to not let it get me down.

I was never one for "why me?" type thoughts. You could just as easily say "why NOT me?" I think everyone has struggles in life - just of a different nature. We may see people we know, co-workers etc and think yeah they have a great life, but we may not know what may be going on for them - be it medical, emotional, financial.. whatever. So I try to accept my lot and make the most of it. It could, afterall, be much worse. I figure with D I am pretty stable and knock on wood haven't had too many serious problems. I see some folks struggle with constant problems, hassles, other things, and it reminds me that really I'm doing OK.

I think it's good to recognise the rage - heck try and get it out of the system... it won't help to just let it sit there and fester like an old wound.  Yes it's not fair, but life's like that.

I put on two bets yesterday. Both $10 for a place. One horse got nowhere, the other came 3rd and paid out $2... I spent $20, I won $20. That's a lot better than it could have been (ie: lost $20). I'm OK! 

[billmoria]

Scarlet - so many of us have been in your place. I knew for ten years that I would be on dialysis. After 4 years on D I feel so much better than the period just before it. No one likes needles, no one and I hope you are somehow able to put that fear away as much as is possible. I lost my mom when I was 15. I miss her every day but she would be the LAST person in the world that would not want me to be the happiest person I can be what ever. I have a wonderful. man in my life - we are not allowed to marry and I have had to leave the US to live with him - I see dialysis as the means to be in his life for as long as possible.
I know you had a very bad day and I think this is a great place to vent that. I only started on here today although I have followed IHD on twitter for some time.
I wish you well, Scarlet. Grab that man you love and allow his love for you to be an extra incentive.
Cheers
Bill

[Bruno]

I lost my mum years ago but I think of her every day and try to live the way she would have wanted. Scarlet, I'm not going to tell you to be positive and cheer up, but I can tell you you are at a place where people understand and will listen to you. And that does help.