Trying to move forward with my life and dialysis!!!!

[mike22]

I recently found out that my mom wasn't able to donate a kidney due to extraordinarily high blood pressure   Ive been dealing with losing my kidney transplant for 13 months. I took a medical leave in from college. I done everyting i can and supposed to do regarding kidney failure. I have no more healthy or serious donors. Since then, i've started community college just to keep my mind sharp. I do have days where im depressed. Im looking to return to Vanderbilt University in the fall.I feel this is the best decision for me. I will do classes and dialysis. Plus i have a lot of support and arrangement there if the let me returen. I dont see why not because dialysis is the only way my health is stable until a kidney is available. I have to admit that im a little scared.  I know i will have to do dialyis for sometime until a kidney is available or until someone serious and healthy enough comes along.  I believe getting a good education will make me feel good about myself and help me in the long run. I wish people will sometime understand that i have a life. I wish they understood that i deserve to have a good quality of life just like everyone else.  I would love to here from other college students on dialysis. I would like advice on ANYTHING. Especially on things such as  gettting enough studying time, rest time, scheduling your day around dialysis, coping anything will help.

[MandaMe1986]

Well I am 23 and have taken a year off.  I haven't started dialysis yet, but it looks like I will before the year is out.  I have had kidney problems sense my Freshmen year in high school.  And you know anything when you are sick is hard.  But there is no reason why you can't go to school and go through dialysis.  I went through chemo and school at the same time.  There will be days when you have to push yourself to get up and out of bed. But there are going to be thoes days anway.  For me it has helped me keep going, and not give up.  Being sick is only a part of what we are.  Don't let it get in the way of you doing what you want to do in life.

[willowtreewren]

Hi, Mike,
 

I am not a kidney patient, but I am a caregiver. Kidney failure affects the whole family. I went through a really tough time in January. A donor for my husband withdrew his offer because he lost confidence in the transplant center because they were taking so long to process him. It was devastating to be so close and then have the rug pulled out. So I understand a little about what you are feeling about your mother's not being able to donate. I tried for my husband, but my creatinine clearance just barely missed the cut off for our center (even though it was within the UNOS acceptable range). It has been frustrating. And like you say there are up and down days.

But you have come to a really supportive place. You will find the folks here listen well, answer questions when needed, and understand all facets of the kidney failure journey.

There are many ways that you can incorporate dialysis into your schedule and still lead a full and satisfying life. There are many options for the kind of dialysis that will work best for you. Educate yourself as best you can so you can be in control instead of just doing whatever your medical team says to do. Remember that YOU are the one who owns the disease.

I hope you visit often. Share with us the good, the bad and the ugly. It helps to lighten the load sometimes.

Aleta

[kristina]

Hallo, Mike what a great idea to continue your studies, no matter what! I had my first kidney failure with 17 and a half years old and I had no idea how things would continue and I was not well at all. Nevertheless, I did continue with my studies and had a talk with my teachers/lecturers/professors and informed them of my condition. I found it helped me a lot to inform them and they always allowed me take to part in the examination even when I missed more than 50% of the lectures. Of course, I backed everything up with medical evidence/papers and studied a lot at home. I mention this here because on one occasion there was another student, obviously not well, but he did not inform the lecturers about his condition and even though he was absent 50% of the time whereas I was absent more than 60% of the time, I was allowed to take part in the examination and he was not. I believe he was too proud to inform anyone and I felt sorry that he had to pay such a heavy price for his pride.
Another important point for me was that the teachers/lecturer/professors helped me to plan a way of studying as I spent a lot of time at home. You will see that they are only too glad to assist you when they realize how serious you are to continue your studies. Many teachers/lecturers/professors really love to teach and they don't mind to give you that little extra help. Good luck and all the best!

[TeenHatesDialysis]

I feel your frustration.  I have 3 daughters and 2 of them will need kidney transplants. The youngest, 14 years old, has been on dialysis for 16 months.  She is in high school and definitely struggling. My 18 year old has 18% kidney function and will be graduating HS in less than a month and going to a university in the fall. She is in denial about the entire kidney thing. Back to my 14 year old. It seems like everyone who has volunteered to be a kidney donor has been rejected for one reason or another. One of her potential donors was rejected due to High BP, like your mom.  However, she feels that the high BP is directly caused by a prescription medicine and has gone off Lexapro, an anti-depressant, to prove to the doctors that she does not typically have high BP. She researched all of her medical records and realized that her BP didn't increase until she started taking Lexapro about 6 months ago. I know that it is probably breaking your mom's heart that she can't donate a kidney.  Does your mom have a long history of High BP? If not, it can be caused by the anxiety of a son that is going through so much and she feels helpless. It can also be caused by "White Coat" Syndrome...the anxiety of being around doctors. Or it may be associated with prescription drugs. The hospital that tested my daughter's potential donor said that if she could get her BP under control, either by eliminating the Lexapro or taking BP meds such as Norvasc or Lisinipril that they would reconsider her again in the next six months. 

Your mom needs to get her BP down regardless of how she does it, because your family, like mine, doesn't have enough kidneys to go around. I think some of the more technically advanced hospitals are allowing people with prescription controlled BP to donate a kidney. If you think about it, High BP does not destroy one kidney at a time so it wouldn't matter if your mom had one or two kidneys. If High BP is going to destroy a kidney, 99% of the time it will destroy both. As recent as this past year, this hospital would never consider taking a kidney from someone with prescription controlled BP. I think it is more likely that a person will try to keep BP under control after donating a kidney, keeping the only kidney they have left healthy. Just my thoughts. As a mom, I know your mom would do anything to help you. 

I don't know too much about Social Security Disability Insurance. I wish my 14 year old qualified, because it is extremely expensive cutting my work back to 1/2 time and the travel associated with dialysis and other doc appts. However, since my 18 year old is at 18% kidney function, considered ESRD - not on dialysis and listed as "Inactive", she should be able to qualify for SSDI while in school. This should help with your college finances since it is impossible to go to school, dialysis and work....although some people on this board do it.

Don't give up hope. I met a lady at a recent charity event and she told me that she was on dialysis for 2-3 years and went to her high school reunion where someone she hadn't seen in 30 years became her donor. She told me she posts on this board.

Just my thoughts.  Sorry, I tend to ramble. Good luck and don't give up. You will get a new kidney probably much sooner than you think.

[monsterman]

 Mike
I can chime in here I think. I've been doing Dialysis now for about 4 weeks. I have several other health complications so I am not "new" to being sick, feeling like crap and not being able to be normal. I can tell you this much keep yourself busy. The minute you stop being busy and let your mind start thinking about things, your condition, how things used to be etc thats when things will really start to get worse and finally SLAM to a STOP.. Believe me "been there and done that many times"... I am going to be 30 in July and all I can now say and know for a fact is "things can always be worse" then they are for you.
I could sit here and type all the things I currently have wrong with me but we would be here awhile. Lets just put it this way, my Type I Diabetes has left only 3 organs left in my body undamaged and that work properly. Thats my brain, heart and liver.. Everything else is shot or messed up. I have a busted right hip and Osteoporosis so I am not to mobile. I cannot work, don't leave the house much. I only have my RC Hobby Addiction, my computer and now my life with Dialysis that keeps me busy and the mind occupied.

The best thing that has happend to me over the past 5 years though is getting a computer and getting on line. Not only did it open up the intire world of the Internet to me but it has enabled me to reach out and make friends and keep in contact with people all over the world. My mind stays busy, my hands and eyes and thats what keeps me going. Sure I still have a day or two each month where I would rather not have woken up that morning but I push forward and you just have to stay focused and on top of things. It sounds like you seem to have a good family or friends to support you and that is also very important. I have learned that you can easily find great people, friends and family here on these message boards as well.

Keep your head up Mike and don't let things get you down!!

[Stacy Without An E]

As a five year Dialysis veteran I wanted to let you know that you shouldn't let kidney disease steal your dreams, because it can happen so gradually the realization won't hit you until much, much later.

I promised myself I wouldn't miss work (I'm a radio personality in California) because I love my job, but more importantly, because Dialysis CANNOT WIN.

It will try wholeheartedly.  It will sap your energy, squirrel your moods and try and steal all that you hold dear.  Don't allow that to happen...ever.

Going back to school (which is a grind all unto itself) isn't going to be easy.  But you should be proud you have a plan and you're sticking to it.

I don't know what you're studying to become but pick something you're ultimately passionate about.

Dialysis HATES passion.  It makes him weak and dizzy.  He cowers in its presence.

It will be a constant battle that you can ultimately win.

Good luck and Godspeed.

[Tinah1968]

Stacy that was a great answer....

Mike,

I agree don't let Dialysis take control of you. It takes me and Hour and a 1/2 to get dressed in the morning sometimes longer because I am so tired. But, I refuse to stay home from work and become a victim of Kidney Disease. We all handle things differently but, we all must FIGHT THE FIGHT that is worth fighting and that would be not to let Kidney Diesase or Dialysis control everything. Exercise, Eat right and keep a positive out look and we will win by living...  Live your life and fill it with dreams and once you reach one dream go for another becasue that will keep you wanting more out of life then just Dialysis. As Manda said it is a part of who we are until we can get a Kidney. Until then we have keep living...  Good Luck to you 

[bette1]

I was in college when I started dialysis and I was able to graduate a 4 year college and also go to graduate school.  What helped me was as the others said, staying busy, taking less hours than a normal full time schedule, and having a support system, and a really good medical team close by.  If you have that in place I am sure that you can do it. 

Are you doing hemo or pd?  Good luck and pm if you have any questions or need any help.