How I came to be on dialysis

[MelissaJean]

My name is Melissa.  I am 24 years old and from Berkeley, CA.  I was born with a lung disease called Cystic Fibrosis and received a double lung transplant at the age of 19.  Due to the intense dose of antibiotics taken when I was younger, and the anti-rejection medications from the transplant my kidneys have failed.  I was diagnosed with renal failure after I did blood work for routine doctor appointment on June 5, 2006.  I was admitted into the hospital immediately.  When I left the hospital 5 days later I had a hemo dialysis catheter and a PD catheter.  I have hemo dialysis three days a week and PD training three days a week.  The hemo dialysis leaves me feeling tired and weak.  I sleep most of the day and can't go to sleep most nights until 3-4am.  I go to Davita for my PD training and am extremely unsatisfied; my appointments are constantly canceled or changed, I have 3 nurses training me and neither have any idea where i am at in training and how many more trainings I have left.  I start a new job (as a teacher) in 2 weeks. 
Right now I feel discouraged, broken, sad, and alone.  I am too tired to be an advocate for myself.   I understand why people decide NOT to do dialysis.  I have such a deep admiration for all those that are diligent with their treatments.  My motive for keeping consistant with my dialysis are my friends and family, and the hope that things will get better.  Music, God, friends, books, and TV have helped me to cope.  Also, reading the posts on this website are encouraging.  I don't feel so alone, and I see that life won't always be so devastating.
Thank you. 

[jdat]

Another young one like me ... it feels odd to think we have to go through this at such a young age but we are strong!

Do not give up because in the end I think it's all worth it!

I hope you can adjust as quickly as possible to PD. I was on it and while I didn't like the constraints it put on me timewise, the treatment itself was much more comfortable than HD.


In regards to the nurses and appointments playing yo-yo with your schedule, you will quickly learn to set your foot down 

Welcome to the site

[Hephs-little-lady]

Hi MelissaJean,

Just wanted to welcome you to the site. I think you will find the answers to a lot of your questions here. It is also a good place to vent your frustrations and there are many people willing to just listen and help when needed. Ask all the questions you need to!

My husband is on PD and is doing really well, he started of on hemo and was tired and sick all the time. It does get better and you are not alone. We are also young, only 25, but are really learning to live life despite the constraints. I really hope you will too.

Anyway, welcome, make yourself at home.

H-L-L 

[angieskidney]

Welcome MelissaJean.
You will be able to do PD at the school if you really need to. It should be easier as an employee instead of fighting to be able to as a student like I had to. Tell the nurses that you have a deadline to learn by and keep records of your training to show them where you are at. That might help? Who knows. Good luck.

[deej]

Welcome to the site, MelissaJean.    Don´t feel depressed - it does get better.

[Rerun]

Welcome to our site Melissa.  I'm sure it feels like you won one battle just to get shot down again.  I do think PD is best over hemo.  I worry about you trying to teach while so new on Dialysis.  I guess you can give it a try and then stop if you can't take it.  We have a couple of teachers here on the site that have kept working.  I finally gave in to disability, but I'm 45.  When I was 25 it didn't even cross my mind.

[deej]

I´m 55 and still teach three days a week. My students are very patient with me when I have to be admitted to the hospital. I´m on hemo right now but changing to PD very soon so I can work more!

[kitkatz]

I am a 6th grade special education teacher.  I teach five days a week and do hemo 3 days a week,  I have agood schedule.  If you need encouragement here is a place to get it.  Good luck!

[Mom3]

Please don't give into feeling discouraged! You sound like such an incredible young lady who has been through so much! My son is also young (27) and on hemo dialysis...

Welcome!!

Mom 3

[Joe Paul]

Welcome MelissaJean, Its good you are here!

[Bajanne]

Here is another teacher welcoming you.  I teach high school (English) and am on haemodialysis M-T-F for 4 hours.  It used to be very draining, but I am fiinding as I go along and I am able to cope better.  I am even teaching French privately when I come off dialysis on Mons, and Weds (as I did this afternoon).
I am glad you found us.  You have literally thousands of posts to read (to catch up!!).  Choose those that will be particularly helpful to you, or start a topic yourself.

[Sluff]

Welcome to the site, the fact that your here shows you have great strength. I admire you, it seems like the tiredness and sick feelings I feel is in no comparison to what most everyone on this site has been through, it gives me the strength to live instead of feeling sorry for myself. Depression rears it's ugly head occasionally, but then after reading some of the posts like yours makes me realize I haven't been through anything yet. Stay Strong enjoy this site because it is awesome.

[SpeedFleX]

Hi Melissa,

Welcome and just remember NEVER give up. I'm 19 and learning tons from all the nice people on these forums! Very great site.

[goofynina]

Hello MelissaJean and Welcome,  As you can already tell, we are all here for you, the best support group i have found is right here.  This website has gotten me through so much and i know it  will do the same for you. I hope you get adequate training for PD and with the teaching position, you might opt to choose the cycler, it runs while you are asleep, it was very easy to learn and i am so very happy i made the decision to go to PD, alot more freedom (timewise) and the fluid and diet arent AS restricted.  Put your foot down my friend, and you tell them you not only want adequate training you DESERVE it.  I think its time to call the dr. and explain to them what is going on with the training, they need to be made aware of what is going on, i am sure if they can do that to you, they will try and do it to others as well.  Good Luck to you and please feel free to post more questions, comments and concerns,  WE ARE HERE FOR YOU... Hang in there, it does get better........

[Mom3]

Great advice Goofyina!

And if the doctors don't help and the situation doesn't improve fast, don't hesitate to look for new doctors and clinics if that is an option in your area. My son and I recently changed and we are much better off for it! You deserve the best available...

Good luck again. Do check back in and let us know how it is going...

Mom 3

[Epoman]

Hello,

I'm sorry I forgot to welcome you. I have been very busy training on NxStage and running this site, it is growing so fast sometimes it is hard to keep up. Welcome to the site. I hope you enjoy it. Please ask as many questions as you want and help others when you can. Thank you for the donation it really is appreciated. Yet another Californian, there are a lot of us.

- Epoman
Owner/Admin

[JerseyGirl]

Keep your chin up, Melissajean.  You'll be feeling much better on PD.  The training schedule you are on sounds inconsistent.  I never train that way.  Usually when I train I tell the patient that they are all mine now and hemo is done for them.  Since I've flushed their catheters during the break in period I can pretty well tell which catheters will be successful.  I train patients at least five days in a row.  I do the work the first day and then let the patients do the exchanges themselves under my supervision  and they are usually ready to perform their own exchanges the third day.  I don't ask them to do a back up hemo unless they come into me fluid overloaded the first day of training.  Tell your Clinic Manager the situation and insist that training be completed ASAP.  You WILL be able to start that dream job.   I too suggest CCPD - it will free up your days for teaching.

[scyankee]

Dear Melissa,
   Welcome. I know how hard your life has been with CF. I lost my son to CF.
But you are strong and can get through this difficulty too.  As said earlier YOU
tell them what YOU need NOW.  Good luck with your career! How exciting
for you. As the saying goes" you've come a long way, girl!!"
  Take care and hope things get better REAL quickly.