Always More Hell

I know it is hard to have had so many medical procedures and then to have to endure more. I really don't have any answers except your dad is right. These people are only human just as we are. Try to talk to them. Ask questions.

We can't discuss suicide here on the forum, so I can't comment on that. But I wish you could learn to accept things for what they are. I know it is not good. I know you are unhappy with things. But learning to accept takes a huge weight off of our shoulders. It makes it easier to deal with everything going on and makes us feel happier. Even if it doesn't seem like it would. You can't change what has happened and you can't change what is going on now. Just know that they are doing tests to help you. It can sometimes be a bitter pill to swallow, life just isn't fair at times. I hope you can understand what I am trying to say. I hope I didn't say anything to make you feel bad. Know we are all human...

Also, I want to say this: I understand why talk of suicide is not allowed here, the moderators want to cover themselves. But consider this: by not letting some who may feel they need to talk about it, you're quite possibly pushing them further down that road. No problem was ever solved or helped by not being able to address it.

If they were trying to see me as a person, then once again, they should have considered the psychological erosion that all of those procedures (as well as, what I didn't mention at first, being in a coma for three months when I was twelve) would cause. Never, ever, did it come up in medical conversations, and the team has even admitted to not understanding why their patients become depressed. They do not see me as anything more than numbers, be realistic. They have thousands of opportunities to look into or inquire about what happens to a person. Every time I try to express why I'm shaken, they don't want to hear it.

It's too late for them to be trying to connect with me through casual conversation like that. I see medical professionals as nothing more than monsters now. They had decades to try and turn that around.

Post Edited (nategerdney) : 11/16/2015 3:36:34 PM (GMT-7)

Nate, as long as you see them as monsters, they are going to be monsters. You know you need these people, so why not try to make it easier on everybody including yourself. The hate that you carry around is only really hurting you. Everybody is human. Everybody has feelings. You can't go around alienating everybody and expect them to respect you. Or to even be happy. Only you can change the way you look at things. I truly feel bad for you. I hope you can see where it is all headed.

What can be done about it? It is in the past. You can't change it and as long as you remain there you aren't going to move forward. For your own good, start fresh. Look at the good things in your life, not the bad. Only you can change things. It is your life.

It sounds like you have a family that loves you. Take the time to love them back. Make memories. I am just saying as long as you carry the hate and ill feelings, you aren't going to be happy.

Admin owns this site. That is a rule. If you need to talk about it so badly, you should see a therapist. They are trained to help in these matters. Or call crisis, 911. This topic can be triggering to others.

getting by said...
What can be done about it? It is in the past. You can't change it and as long as you remain there you aren't going to move forward. For your own good, start fresh. Look at the good things in your life, not the bad. Only you can change things. It is your life.

It sounds like you have a family that loves you. Take the time to love them back. Make memories. I am just saying as long as you carry the hate and ill feelings, you aren't going to be happy.

That's the problem - it is not all in the past. This team continues to be oblivious to the psychological effects of what their patients are put through, while believing they have great support for their patients when they have zero. Not long ago, in a meeting, these doctors admitted that they know many of their post-transplant patients are depressed, yet do not inquire or understand why. When I try to express why I am hurt and confused by my experiences, they don't want to hear it. Also, one of the team is supposedly involved with a transplant support group in the city, yet makes no effort (and I heard this from the support group) to inform patients of its existence.

Another example - two years ago, I talked to a nephrologist about terrible abdominal pains I'd been having for years, which that year got much worse. I had brought this up before, and was initially told that I'd just have to tolerate it, which is not an acceptable answer. In this meeting two years back, the doctor assumed it was a sucrose and lactose intolerance. I had ample evidence that that did not make sense, and when I brought this evidence to him, he didn't want to hear it. So I gave his suggestion a try, and when the pain became so bad that I could neither eat or sleep for days, it was found (by an outside specialist) that massive scar tissue had built up in my intestines from so many years of previous surgeries.

Never had this potential consequence been discussed with me or my family. Then, the final nail in the coffin of my trust, the nephrologist I'd spoken to said he has thought it was scar tissue all along, which was a blatant lie. Are you really suggesting to me that I forgive and forget behavior like this from these people? They are living in a fantasy that they do, and can do, no wrong, and while I've accepted many consequences for my personal and medical mistakes, they own up to none.

And I have a very legitimate concern that my body might have to continuously go through another invasive procedure every couple of years. This already has messed up my first thirty years of life, I cannot keep up this cycle. I need an eventual solution.

By the way, I am in the process of starting over, with a new hospital and new team, but as they are out-of-state from me, the transition is long and hard. In my first meetings with them, I was able to start over and speak to them better, but it will still not mean I'm comfortable sharing anything of my personal life.

Post Edited (nategerdney) : 11/17/2015 8:23:53 AM (GMT-7)

Have you expressed your anger at the medical group in a constructive way?

and please don't ignore the links I gave you.

In business school, we are trained that you never present a problem to management unless you can propose 2 or 3 possible solutions. I find this applies to life in general as well.

A constructive way, for you, would be to suggest better ways things could be done that would make things better for young people today. Start a program to educate medical professionals on how to treat and explain things to kids. Take how you feel and brainstorm solutions, that if offered to you & your Drs as a child wouldn't put you in the place you feel like you are today.

In the short term, volunteer in a children's hospital. Give the children the reassurance you wish you'd been given.

Those are just examples, they may not fit your circumstances exactly, but will give you ideas of what can be done. Don't waste your energy beating a dead horse, use it constructively.