A first timer with some fears...

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lblewis
Posts: 1
Joined: Mon Oct 25, 2004 5:47 pm

A first timer with some fears...

Post by lblewis »

hi everyone,

I've never ever posted on a forum and even though I should be working I can't help but jot a note here, because I need to...

Writing from newfoundland, Canada. I'm coming up on my 19th year of having my kidney and i"m well (am happy to report) and continue walking that struggling line between giving enough attention to my health so as to remain responsible without becoming paranoid...a fine balance.

But I continue (lately, for some reason) to struggle with issues of insecurity and fear of the future...I have fears around my future health and what will happen. I hate prednisone, yet respect it for what it does for me. Yet it's a devil, that prednisone...

I thought I'd gotten over it, but lately I'm feeling the same feelings I felt years ago (like when I was 7 years old when I had my first transplant) around my chubby prednisone cheeks being so unattractive to the outside world. I'm so confident in most chapters of my life, so it's an almost odd thing to bring up. I'm aware of my appearance and my health and can't help but wonder what will happen after this kidney fails? I don't mean to be negative here in my first posting, but I know I'm speaking to those who know, who've been where I am or who are there now. I almost feel like I have to ready myself for more changes (which is always the case with kidney disease, I guess). I just don't know what they will entail. The fact is that I'm trying not to think abotu it, but perhaps talking about it will relax my fears...

That's usually how it works with me.


I'd like to say before I signe off that I"m thrilled that I fell upon this forum.Reading the few postings I have have already warmed me and relaxed me somehow.

Leah
amanda in CA
Posts: 1806
Joined: Fri Apr 23, 2004 5:14 pm
Location: Georgia, USA

insecurity

Post by amanda in CA »

Hi, I'm not sure from your posting if you are feeling insecure because your kidney is not working so well, or if it is just those feelings that I think that we all get. My kidney lasted for 10 years, it was deteriorating for some time and thinking back I think the main damage occurred fairly early on because I had problems with energy and stamina after only a year or two. However, when it finally gave up, things went downhill pretty rapidly, and although I thought that I had come to terms with it all, I soon found that I was back to where I was when I was first diagnosed with renal failure. Certainly in those last months of the transplant working the insecurity escalated dramatically (hardly surprising) but I think throughout the transplant I niggled away at it every so often. If your kidney were to fail? There is always dialysis, either peritoneal or HD; it's far from perfect and certainly doesn't give you the quality of life of a working transplant but at least I'm still here to watch my little boy grow. love Amanda
Doolally
Posts: 379
Joined: Fri Oct 01, 2004 5:20 pm
Location: UK

Fears & Insecurities

Post by Doolally »

Hi Leah,

My kidneys haven't yet failed - on immunos/steroids to keep them holding on as long as possible. I also worry about my future - what will happen when they finally begin to fail? When will this happen? Next month or in ten years? Will I be able to have a baby before this happens? Most people I know don't really have to think about their future. So its pretty hard when you're forced into a position of having to worry about your future. I'm 28, and my friends my age are still quite care-free and blase about their future, but I feel like I'm an old lady before my time!!

I've only recently joined this forum - I had put off doing anything like that for ages because I didn't want to get sucked into a world dominated by kidney disease. But its not like that at all. Being able to share my experiences with people here means I can be more relaxed and stress-free when I'm being "normal", if you know what I mean!

I love what you said "I hate prednisone, yet respect it for what it does for me. Yet it's a devil, that prednisone... ". I always say its evil, but know I'm also reliant on it. It does do good for my kidneys, but I hate what it does to the rest of me. I don't know what's worse - how ill it makes me feel sometimes, or how it effects my appearance which makes me insecure. The swollen face & tummy, and spotty face, really don't do much for my confidence. I feel like sticking a sign on me saying "I'm only ugly because of steroids"!!!! I'm sure I don't look as bad as I feel, but I can't seem to convince myself of that! I keep drawing cartoon characters of myself in my head (I'm not very artistic on paper) and laughing about it!

I've got a Disability Appeal tomorrow (eek) so I'm really far too focussed on my illnesses at the moment. But if I get the money (I deserve!) I'm going out to pamper myself and make me feel better about myself. Yay! Lets hope I get the money...

Its good you've joined the group here. You're not being negative, just realistic. There's only so long you can push your worries under the carpet.

Take care, & keep posting...
Love Ali
Bill
Posts: 232
Joined: Mon Apr 26, 2004 9:52 pm
Location: Maryland, USA

Post by Bill »

Leah:

Hi, I used to post often here but got a bit busy with life (new job 10+hours a day). So hi everyone. I have been reading regularly, just not posting. I’m usually not much help with all the updates since I had my transplant in the, as Cheryl of CT says, primitive days.

I have had my transplant for 31 years, 5 months 15 days. And I can tell you what your experience is most likely normal; I get it sometimes too. The fear of rejection never really goes away, but does get better with time. I’ve just learned to accept it and live with it.

Having said that I have never made any decisions in my life based on the fact that I “mightâ€
nycpetit
Posts: 262
Joined: Fri Apr 23, 2004 11:00 pm
Location: Miami Beach

Hi there

Post by nycpetit »

Like you, I was confused, scared and just generally clueless to the whole thing. I've been on this board through it all. I am now two and a half months post transplant,and doing marvelously.

All of life is a risk, and an up and down. I can't really say how to cope, you just do. You ask questions, always remain on the ball, and don't take "no" for an answer. If your kidneys fail, you are going to figure out what your options are when you get there. If and if and if...all of our lives really are ifs.

And by the way, you can have kids after a transplant too!!

"Life is not a dress rehearsal!" :) So keep positive, informed, active and take care of your health. And remember that you Do have some control over your own life.

You won't get sucked into the whole "kidney disease" mentality unless you let it suck you in. I, personally, and I know it's different for everyone has found that this experience has made me happier, and more grateful for all the simple stuff in life. I realize it may not be so for everyone, but, coming from someone for whom it wasn't always this way, I consider myself lucky to have found the "true" meaning of life and not only being able to "conceptualize what is important" but to "know" what is important.

chins up!!
natalie
JMan
Posts: 3470
Joined: Fri Apr 23, 2004 10:21 am
Location: Lives in a slightly weird bit of Shropshire called Telford!

Post by JMan »

Hi

Lot of good advice in this thread I guess..

Right now I am NOT too happy about doing CISC (http://www.nlm.nih.gov/medlineplus/ency ... 003972.htm) DO NOT READ IF SQUEAMISH...

for me this is just a real KICK as I'd just about got stable and well enough for once in my life to plan a trip abroad for a period of time.
"Dialysis! What is this? The dark ages!"
L. 'Bones' McCoy, ST"
Read my blog:)
Live to Fly
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Mike
Posts: 1594
Joined: Fri Apr 23, 2004 2:47 pm
Location: Mansfield :o)

Post by Mike »

Hi,

I know what you mean about fear of the future. I was diagnosed when I was 18 and although I held onto my function for many years I just started PD 2 weeks ago.

I really feel that I can't move on in my life until I am well but I doubt that I ever fully will be. I still feel tired and ill but the antibiotics I'm on at the moment due to an exit site infection (very painful :( ) are really not making me feel much better !

I feel at the moment that most of my time is being taking up by the dialysis :? It doesn't help that I have been off work for 4 weeks so I think that once I get back to work and doing things again it may feel like it is less of an intrusion.

I know what you mean about presnisone, I was on that a few years ago and absolutely hated it :x I must have got every side effect that goes with it! I got horrible mood swings from virtually suicidal to being ecstatic in the space of 1/2 hour and the unbelivably strong hunger which would not go away :shock: It didn't work for me anyway and I was put on cyclosporin which didn't work either.

Transplant is the thing that really scares me! I am happy to have started PD as I know it will make me feel better eventually but my only experience of transplant is that it doesn't work. I know that there are many many people who have had successful transplants but I find it so hard to believe that when my turn comes it is going to work. I am scared of the massive responsibility of looking after it and I am afraid that I will do something wrong and it will fail.

The feelings you have are the same as all of us kidney patients have but this site is the best place to come if you are feeling worried about anything. The people here (particularly Jman who is a wealth of information :D ) really help and care.

I hope you feel better and at least the treatments we have available to us, although bone of them are perfect help us to lead as full a life as possible and keep us alive which to me is the most important thing.

best wishes

mike
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