Hi Everyone! I hate dialysis!

[Short_Cutie]

If there was anything in life that I hate the most it would be dialysis. I was born with a rare bone marrow disease called Fanoconi Anemia and at the tender age of 6 I had to have a bone marrow transplant. I was lucky that my sister was a match and she donated her marrow to me. Transplant was a success and everything had been going smoothly until BOOM I hit the ripe old age of 22 and mysteriously went blind due to sudden cataracts in both my eyes. Had them removed and some laser surgery and I was back on track again until WHAM! I was diagnosed with cervical cancer stage 3. I had three rounds of intense chemo which almost killed me and a complete hysterectomy but I survived.....barely. I went back to work thinking everything was going to finally settle down but then I got flu-like symptoms and it got so bad that I had to be transported to a larger hospital where they finally figured out that my kidneys had failed due to the chemo. My first dialysis session I flatlined because I'm so tiny they didn't realize that they needed a smaller dialyser for my machine. I spent 6 months in the hospital getting stabilized and I have been on dialysis ever since. I'm 26 now and I don't have a chance in hell of getting a transplant anytime soon because in January of this year I had a tumor in my mouth and they had to remove part of my jaw and several teeth. Surgery was a success but recently the drs have spotted some more pre-cancerous cells so it looks like I'm in for another bumpy ride. Anyways the point is I can deal with all the surgeries and crap but I really hate dialysis. I have to have the worlds dumbest dialysis unit ever. They are so unproffessional that I have now taken over my own care because I can't trust them. I honestly don't know how they ever got their nursing degree to begin with. Dialysis also makes it super hard to travel which is my passion in life and now I am very limited to where I can go. I can't work ,I can't go to school and I can't even take a bath with all of my lines that I have. Its no wonder that I think about quitting every single day. If it wasn't for my parents and my nephew I think I would have given up ages ago. I guess I'm just hoping to find some people out there that hate it as much as I do. Thanks for taking the time to read my rant. I feel so much better. Terri

[gkcoley]

Wow, i know i can completely understand all youve been through but hang in there, youre among friends here i also sent you a message to introduce my self and yadda yadda lol 

[Comeback Kid(ney)]

I can truly understand why you hate dialysis. I have been a PD patient for 3 years and there isn't a day that goes by that I do not want to quit. The only thing that keeps my sanity is I don't want to end up in the hospital. You are to be admired for all that you have been through. What you are feeling is natural and no one on the outside understands what we go through daily. Be grateful for the support of your parents and nephew and I wish you nothing but the best.

[willowtreewren]

 

You need those hugs, Short Cutie! 

Rant all you want here. Folks will understand.

 

Welcome to IHD!

Aleta

[Cordelia]

Welcome to the site, Terri!           

You are a very strong person         hugs to you!       

[Short_Cutie]

Thanks everyone for the support! Having a really crappy day and its helpful to know there are other people out there like me!

[monrein]

  to IHD Terri and I hope this site will be a good source of support for you...you sure have been through far too much.   

[boswife]

Im glad you feel some beter.  You've sure had a rough road and i wish you some better times ahead.  Im so glad you found your way here and also so glad that there are others who are going to make you feel even better than you do now....     Blessings to you lil lady...

[Iwannabean]

Hey Short Cutie, welcome.  I hate dialysis too, and I know what you mean about traveling.  My favorite place in the world is Jamaica.  I got my last trip in last March by the skin of my teeth.  I started D about a week after I got back and I miss my sweet Jamaica already.  The one thing that might hold me back is I also had cancer (Colon) about two years ago and I have apparently beat it, but it may hold off my surgery.  I am lucky, I do have a good dialysis center, supportive techs and nurses and it makes it better, but I still hate it.  I hope this board will make things better, at least out here people will listen and give good advice.  Keep the faith.

Iwannbean (Steve)

[Poppylicious]

Wow, Terri!  I'm not surprised that you feel the hate! 

Btw,  !

[Short_Cutie]

Hey everyone, I'm having a bit of a rough day. Had an appointment with a plastic surgeon about my skin graft site that hasn't been healing up and it looks like my only option is to have another skin graft. The first skin graft was taken to reconstruct some of my jaw when I had cancer but that was in January and it still hasn't healed. Another surgery that I don't want but the dr keeps saying he can fix it. Should I have the surgery and hope for the best or should I keep bandaging it up and hoping that it will heal itself?

[Ang]

 

[CebuShan]

     Terri.
You have definitely had your share of it, haven't you? Don't ever feel bad about coming & ranting. We are always here to listen.
          
Keep us updated on how you are doing.

[Hemodoc]

Sorry to hear about the trouble you are having in your unit. Some units don't treat folks the way that they should. I didn't start to feel well until having home dialysis. People on nocturnal dialysis getting 8 hours a day feel essentially normal in many ways. Don't get discouraged with dialysis itself. Seek out optimal dialysis which is radically different from usual incenter care.

If you are unable to do home dialysis, consider seeing if there are any units in your area that do nocturnal incenter. The added hours make a huge clinical difference.

I wish you the best and welcome to IHD.

God bless,

Peter

[beneteau20]

Terri, I am so sorry hear such horror stories from such a young person.  You must really be a trooper to have survived all that.  I hope things will improve for you in the future.  I guess since you like traveling you have looked into the NxStage program.  I hope it could be an option for you especially since you have basically taken over your treatments at your unit.  We are all rooting for you.  Deb

[RichardMEL]

Wow Terri - I just want to give you a big hug!!! 

Welcome to IHD. You've been through so much but I sense in you such a positive attitude that is quite inspiring - and long time members of this site will know just how I respond/respect positive attitudes, a sense of humour etc in dealing with this crap - and you've had way more than most of us could imagine.

I'm hoping that your time here will be positive and we can help you in any small way deal with the various challenges you've got.

Again, welcome to IHD

RichardMEL, Moderator - aka Tall_Old_NonCutie

[Cordelia]

Big Hugs to you, Terri, welcome to the site, welcome to you!             

[pitagory]

  Terri I hope you are feeling a little better today you have been thru so  much and so young. You can rant all you want here.we all understand. we are thankfull for dialysis but we all hate it too.

[Riki]

I know she only really posted in this thread, but Short Cutie was a close friend of mine.  We were in the same unit.  Some of my facebook friends may remember last fall, when I dyed my hair red, it was Terri-lee who actually dyed it for me.

A few months ago, after having another surgery to remove a tumor from her cheek, in which they removed some more teeth and part of her tongue, they found some more tumors in her mouth and her neck.  These tumors were deemed inoperable. Terri died last night, in her sleep.

I will miss her spunk, her "take no prisoners" attitude.  She was not afraid to tell anyone what was exactly on her mind.  There were many times I wished that I were more like her.

[boswife]

Thank you Riki for posting this.  Im sorry that you now have to miss her   There are others on here too that my heart still hurts for so i know that weather it be someone you've never 'faced', or someone in your 'other' life, they become so important in our hearts and it hurts.  Bless you for hangen with her, im sure you helped her out a lot, as well as her you...  May she RIP now, and your heart heal 

[Riki]

She told me once that she wished she could be more like me, because I seemed so calm and accepting about coming to dialysis.  It was hard to explain to her that it wasn't really acceptance, it was more like grin and bear it.  She hated going into that unit, and she made sure everybody knew it.

[boswife]

Its kind of amazing who we 'attach' to in life.  I think sometimes i gravitate to extroverts  (my hubby used to be..hehe), and you'd think it would be someone softer as im very 'shy' (weard word for a 62yr old) person and would think they would scare me.. but its the opposite!  i know just what more verbal people have on there 'sleeve' so to speek and i just love that about them.  Im glad you had her in your life, and like i said, and now i know, you enriched her life as well   Blessings to all in this crazy world of ours.   

[MaryJoe]

I haven't been around much lately, and I completely missed this post.  I'm sorry that I'm so late to offer my condolences on the loss of your friend. Terri was obviously a lady of great strength and courage to be able to face one medical setback after another. She was lucky to have a good friend like you, and you are lucky to have had a friend whose personality balanced yours so perfectly.   

[Riki]

The funeral is tomorrow.  About a week ago, she posted on facebook, asking if it would be weird to have a candy bar at a funeral.  I'm curious to see if she was able to get it.  She said that she didn't want her funeral to be gloomy, and I know that she planned most of it, so Lord knows what she planned.  I'm not sure what to say to her mom, though.  I'm a little afraid of that meeting.

[boswife]

Oh Riki, I hope this doesnt sound bad of me but if you could bring back to us how it all went i would really appreciate it.  I would love to hear how her plan worked out.  I think it's amazing that she had the mindset to do it.  Sending love and strength to you.. I do believe it's going to be tough, but good of you to get through...