I don't wanna hear "you're gonna be fine"

[SheilaW]

although I know that I likely will be. My fears are real. I'm scared shitless. Don't invalidate them by telling me "you're gonna be fine" or "everything will be ok." How do you know?

My kidney doctor came by the clinic today, and he gave me the green light to get started on the preliminary work for a transplant. I still need to lose about 40 more pounds, but they're going to start me based on the promise that I will continue to lose weight. I will be starting with a heart specialist to do a stress test and rule out any problems soon. If there's any problems with my heart (which there may be...it sort of runs in the family!) I need to get that fixed before I can move on with the whole kidney transplant.

This is the day I've been waiting for, and now that it's here, I'm scared. I don't know what's going to hapen, I don't know what to expect. All I can think of right now is the "what if's" of it all. I know it doesn't always work out. I know things happen.

But I also know I'll likely be fine. But that doesn't mean I want to have my fears invalidated or shoved aside.

I know it's all complicated and stupid, but I'm traveling a road I know nothing about and it's hard not to think of the what ifs.

Sorry for rambling.


PS...I know this isn't really directly related to dialysis, but I didn't know where else to put it, but I had to get these thoughts out.

[kitkatz]

Well...you hit the nail on the head there with your feelings.  Exactly what I have felt for months!  I validate what you feel 100%.  Just put your head down and go through everything the transplant teams want you to do.  The preliminary tests are a royal pain in the ass, just do them and go for it.  At the end of it all you will either get yes or no to the transplant.  Yes mean listing and along wait.  No means you live another way on dialysis.  Your decisions will shape your future.  Love and luck.

[SheilaW]

I thought I should add....

I love my husband more than anything.  And I know he's just trying to make me feel better.  But sometimes he just doesn't get it....

[boxman55]

Go easy on him, you know us males we never say the right things at the right time. Good luck with your testing stay positive in front of the transplant team, ask a lot of questions and even if you don't feel good pretend you do...Boxman

[Sluff]

Your feelings are real and you should be treated as so. It's a world of unknowns, I think everyone would be scared. 

[Romona]

You can feel how ever you want. People do try to make you feel better. I try not to do that to others any more. Unless they are in the hospital or doctor's office with me, they have no idea what is happening.  I still slip up now and then. Be mad at the world. No need to make excuses about how you feel.  Sometimes it is easier not to tell my husband stuff. He still thinks I will be magically cured. Even with a transplant there are medical issues.  Sorry I invaded your rant, but I feel better now.                  Good Luck with your tests.

[kellyt]

Ditto!

After an extensive fistula placement on the 31st of Oct. I am still pretty sore in my arm.  Also, due to my kidneys (GFR at 18) I'm starting to feel even more tired each and every day.  My friend called the other night to ask about my arm and such.  When I told her how tired and weak I was all she could say was "Recouperating from surgery is hard.  That's why you're so tired.  But being that your incision is under your arm no one will see it."   You know, the usual perky response.   GO!  FIGHT!  WIN!

No.  I'm tired because MY KIDNEYS ARE FAILING !!!  And I DON'T GIVE A CRAP ABOUT THE SCAR ON MY ARM!!!!  NEVER HAVE!!!!!!!!          She has not once asked me about my disease and treatment.  I believe she just checks in ever so often because she feels she should.

Maybe she doesn't know what to ask.  Maybe I'm blowing it all out of proportion?   

[st789]

Yes, it is a lot to absord in a short period of time.  The uncertain is scary of course.

[Joe Paul]

Its OK to be scared, but to imagine the worst doesn't do much good either. I take things as they come, and make the best out of whatever happens. No matter what we tell people in our lives about dialysis or kidney failure, they will never know unless they sit where we do and go through the daily battles we face, thats the bottom line.

[boxman55]

well said, Joe Paul...Boxman

[paris]

Joe Paul said it very well. When I was first diagnosed, all I could think was that I was going to die.  Depression hit big time.  Now, 3 years later, with lots of education and great medical team, I am living every day.  Don't look too far ahead and try to focus on what you can do.  I hate not being the person I was, but what choice is there?  There are bad days, times all I can do is sleep, everything hurts, can't eat-------------but the sun is shining and Christmas is around the corner.  Coming here has made a huge difference in my outlook.  Knowledge makes be powerful.  So, keep posting and asking questions.  Life will be different from now on, but it is our life, this is it-good bad and ugly.  Others are not going to "get it" not even family.  We here do get it!  I have lost friends during this time and am tired of    when my family asks how I am feeling.  I feel like #$@!! Don't they know that by now??  Vent all you want- we all have done it. This disease stinks!  We can get through this together. You aren't alone here 

[Redbomb]

Ditto!

She has not once asked me about my disease and treatment.  I believe she just checks in ever so often because she feels she should.

Maybe she doesn't know what to ask.  Maybe I'm blowing it all out of proportion?   

I think you have hit the nail on the head.  People who have never had to deal with this or have been close to someone who has had to eal with it has no clue what to ask or how to ask it.  When I was told my Kidney's were failing, the first person I told was my best friend.    He didn't know what to say.

I know that my Dad was in a form of Denial about me having to start Dialysis.  He was just sure that my Kidney's would stabilize.  It would have been nice, but The chances of that were like 1 in a Billion^2? 

Anyway, where was I going with this?  I think just that a lot of people are curious, but don't know how to bring up the questions of treatment, etc.  So, When someone asks me how I'm feeling (etc) I answer with , "I'm doing pretty good now, but I had an interesting experience at dialysis the other day".  That leaves them open to follow up or ignore (and yes, I usually do have an interesting Dialysis story to tell .. the "fun" things seems to be happening to me lately .. 1) Infiltrated Fistula 2) Too much fluid being taken off and fainting (nearly) in the Chair 3) getting ready for Home Hemo, etc.

O.K.  I'll shut up now.

[angela515]

Never let anyone make you feel as though your fears aren't important or real, they ARE. However, trying to look at their side, they are just trying to be supportive, and because they have never been in our shoes, they don't really know what to say... so they say what comes to mind when someone is usually sick. I can totally understand that sie, and if I wasn't in my own shoes, I might say them things as well, to try to chear the person up. When people tell me that, if it's a stranger, I just say thank you for your concern and move along.. if it's someone in my life other than my family (because they have gone through this all with me and know what to say what not to say and what I am going thru) I try to educate them a little by giving them a short explination of why 'no, I won't be just fine' and so forth... and they kind of learn not to say that anymore but I can kind of see it in their eyes they want to be told what they should/can say without upsetting me.

I hope that makes sense, lol.

[skyedogrocks]

That is great news, good luck!  

My husband Rob is the one on dialysis, so I'm on the other end of kidney disease.  I think somtimes we tell you guys you will be fine for our sake as well as yours.  As caregivers we are just as scared as you are and sometimes don't know what to say or do.  All we want to do is to soothe your fears and make you feel better.  We definitely get that you feel horrible, tired, nauseas, moody, ready for this all to be over at times.  Many times I just want my husband to feel like a "normal person" and just take his disease onto myself.  I know my husband wants to be a regular dad to our son and not have to let him see the dialysis sessions at home or the horrible crampings or too tired to go out and toss a football around.  All I can do is hug him and tell him that I love him and things will be ok.

You don't deserve this disease, nobody does.  Your feelings are totally validated and most of us aren't trying to downplay your disease at all.  We just feel as helpless as you, but we need to be strong for you.

[angela515]

skye said what I was trying to say better.... 

[KR Cincy]

Nicely said Skye...I've come to realize that everyone's intentions are pure and good, but there is a feeling of helplessness that goes beyond me. I had to get used to friends saying "wow, you look really good." It is often so contradictory to how I actually feel, but I realize I have lost weight and I don't look like I'm in pain and so it's just what comes out.

[stauffenberg]

An interesting variation on the 'you're going to be just fine' ideology is the reaction of doctors and nurses to renal patients who speak frankly about the possibility of death.  The entire philosophy of the medical profession is based on the assumption (not always true!) that the worst thing that can happen is death, so when the patient is more open about the short life expectancy of renal patients and the possibile lethal consequences of one dialysis-related issue or another, the doctor is always shocked -- even if he is otherwise the type to take a very negative view of everything else.

[Bette]

I think people are so used to people going to get treatment for a problem and then getting back to normal that they can't understand that we will never be "fine.  Kidney failure has so many complications, and even a transplant is not a cure because it has complications of its own.  I finally accepted that.  People don't mean any harm.  Most are just uneducated about kidney disease

[kellyt]

I started thinking the other day - maybe my friends and family don't ask because I don't look/act sick.  That would make sense.  I just feel they should know that I feel like crap most days.  But, hey -  they can't tell!!   

Maybe that is a good thing. 

[KR Cincy]

Exactly Kelly...we've got our friends and family all confused because we look ok.

Oh and another thing that makes it hard is people always assume surgeries and treatments lead to cures...not so much for us...they lead, at best, to stability.

[angela515]

Yep... I get that all the time, everyday since I was 12... but not from family, as my family is very educated and informed and knows.. but from strangers who would say "Why are you at the dr's... you look great" Most times if my mom was there, she would reply "She may look great, but you wouldn't want to be in her body even for a few minutes, she has much pain and many problems from Lupus and ESRD.".  So from the ESRD end I looked fine except on hemo I looked more sick.. and I get it from the Lupus as well, it was attacking my body everyday all day for years but I looked fine on the outside. I just learned from the responses and questions that it was my job to educate people as much as I could in the little time I was going to be around them. So if we can learn anything from other ppl's comments, it should be that we can educate them, and then we will have more people in the world who do know what's going on and not walking around not knowing. 

[stauffenberg]

When I first developed renal failure, I was in the hospital for four months.  When I finally got out, everyone I knew wanted to celebrate on the assumption that I must be 'fine' now because they would not have let me out of the hospital if I was still sick.  When I first started dialysis at the clinic outside the hospital, the question of everyone who knew me was, "Four hours of treatment three times a week?!  That's terrible!  How long do you have to do that before you're well again?"  Healthy people simply have a very difficult time understanding incurable disease.

The tragic thing is that public policy in democratic political systems is based on what the majority thinks it knows, which results in utterly foolish laws and programs being imposed on chronically ill people.