How does CKD affect your life?

[nog]

Hey everyone, I'm curious...


How long have you had CKD? If you have a career or job, how has it/does it interfere?

Are you overall happy with your medical care? Doctors, facilities, etc...


And, if you're on it, how has dialysis been for you?

[Henry P Snicklesnorter]

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[MooseMom]

I was diagnosed with fsgs in 1992 six months after the birth of my baby.  It sent me into a right tiswas, but then I virtually ignored it because my son was diagnosed with autism, and I didn't think about my kidneys.

FF to 2004; I had just gotten remarried, and I had some tests done for insurance purposes.  That's when I found out I was in CKD4, and up to now, I have to say that it has been devastating psychologically, more so than physically.  However, last year my egfr finally dipped below 20, and I am starting to feel the fatigue of CKD.  My labs are still decent, so maybe I'm more emotionally unwell than physically.  Or maybe I'm sick of winter.

I am happy with the care I have received here in the US, although I have worked hard to educate myself and to keep myself well.  My neph is competent, I'm sure, but he has not had to do much these past 7 years other than monitor me every few months.  Once I have to start dialysis, well, that's when I'll find out how good he really is.

[brandi1leigh]

I was diagnosed with PKD about 2 years ago. Within a year, I had gone from 60% function to less than 20 and was on hemodialysis. I worked for a year and a half with uncontrolled anemia. I was getting a transfusion every six weeks. Eventually I was too sick to keep working as a teacher.  Luckily I had paid for a private disability insurance long before I ever suspected that I was sick. I signed up for it on a whim when I got my job, and its turned out to be a life saver since I still feel too bad to work.

I'm very happy with my care. I love my dialysis center (as much as you can). And I've liked my doctors. If I had one complaint, it's that I'd had symptoms of PKD for years, but no one ever looked to my kidneys as an answer for some of my other probs (ex: I've had high blood pressure for years). Of course, part of the reasons I think I'm happy with my care is that I've done a lot of independent research. I keep myself as informed as possible.

[KarenInWA]

Other than going to once-every-3-month neph appointments, and once-every-other-week epo shot appointments, this disease so far has not affected my life too much.  That is rapidly changing, however.  My last labs show me slipping into Stage 5, and now I need to be serious about getting my fistula placed.  I have been listed since Feb 10, so there's that knowledge and knowing that when I upgrade my phone, I better get one that works! 

I work full-time, work OT when I can (and when it's needed at work) and enjoy going out and hanging out with friends.  I am hoping that dialysis is not going to change my ability to go to the (live) theater, see the occassional concert, etc that I currently enjoy.  I am not looking forward to it, but I know there is not much I can do about it.  It is what it is.  Also, I cannot let dialysis get in the way of my working.  I absolutely cannot.  I cannot let this disease "win".  I will not let it.  If I lose my job, I do not want it to be because of this disease.  My #1 goal is to keep my job and survive this.

KarenInWA

[Henry P Snicklesnorter]

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[FindingNeverland]

We (my family, my doctors and myself) had known that my kidneys were going fail eventually, they were damaged by chemo and radiation therapy when I was three years old. As soon as it started looking bad the decision to start PD was made, luckily it only lasted six months, we found a donor right away, turned out to be a family member. Back then it seemed simple and everything just kind of went along at a steady pace. I went to school and had friends over, well kind of had to because I couldn't go anywhere in the afternoon or at night, I was hooked up to my machine but it didn't feel like much an inconvenience like it does now. Nine years later that kidney rejected and was discovered way too late to save it. I was very ill and had a catheter place for emergency hemodialysis and from there I stuck with it. It's only been a year but so much has happened in that time. Three times I had to have my lungs tapped because I was gaining too much fluid around them and twice it caused a partial lung collapse. When I had my fistula created they had trouble waking me up because of my problem with fluid. Apparently my dry weight wasn't calculated adequately. Now that we have it where I should be I'm doing better but for me, I just don't tolerate it well. I'm weak, I'm tired, and I lost over twenty pounds. I'm just now starting to gain a little weight back. People ask me why don't I switch back to PD and the reason was because I had a donor lined up, I wasn't expecting to be on dialysis this long. I was hoping to have my second transplant by the time they needed to pull my catheter out and place a fistula. As it turned out, my donor developed high blood pressure and that disqualified her. It's been really hard to find a match because I'm type O, no one in my family is a match except my mom but she can't donate because of her bought with breast cancer, my aunt who donated nine years ago, and my other aunt who developed high blood pressure. Two people have been tested but didn't clear the cross matching process. We had some big vacations planned that we just wound up canceling, I know I can still travel and what not but I can't see myself having fun when I have to spend part of the trip getting dialysis and feeling crumby. So here I am still on hemodialysis. I hate it and I'm sure even if I switched back to PD I would still hate it and feel inconvenienced.

[rsudock]

I was born with polycystic kidney disease so my family and I knew dialysis was eventually around the corner. After my dad split my mom was left to raise us. I don't feel like my mom did all she could do to educate herself on our disease because after the divorce we went to a nephrologist and by then it was too late for our kidneys. (my bro has the disease too!)

When I was 15 when I had my first transplant and avoided dialysis all together! 10 years I have been able to live, go to school, and earn a degree.

I worked for 2 full years as a teacher and loved it!

This past year I finally went on dialysis and it has been a HUGE DOWNER! I have been emotionally rocked by this disease. I feel very devasted and down about dialysis. I quit my job b/c it was way to stressful of a school district to work in while being ill. I am starting to work part time now but I do sleep a lot. Is this b/c of the disease or the mental aspect that moosemom mentions I am not sure but it is hard to be all light and happy about D. I keep praying that it is b/c I am adjusting still to my D life and I go to incenter dialysis as well. If the person who is being evaluated right now for a donor doesn't work out then I am going to switch to nocternal hemo and then eventually home hemo to see if that will make me feel any better and feel like I can have a normal life again.

I LOVE my doc at university hospital in Cleveland. I can email him any time I want and he calls me at home....I wouldn't trade the relationship I have with my doc for any other doc in the world!!

I have been fighting this disease my whole life....and this is the first time that I feel like the disease has knocked me out this round but everyday I find getting my self back together is getting easier....

xo,
R

[Kitty Cat]

My husband was diagnosed around 12 yrs ago with an auto immune disease that attacked the kidneys until it killed them. He's been very lucky to have an amazing doctor & surgeon who are there whenever we need them.

He was doing peritoneal dialysis in 2003-2004 but because of his build at that time, his tissue in his belly was so thick all it did was add weight and didn't clean out the toxins. Due to this he almost died March 3, 2004 and the doctor demanded he finally leave work. That hasn't gone well for him at all. He's convinced he is nothing without a job. No matter what anybody says.

May 2005 he had a transplant, it wasn't a perfect match, but it saved his life. This kidney failed in the summer of 2006 and he went back on hemo. Jan 2007 the transplanted kidney had to be removed because it was so enlarged they thought it would rupture.

Oct 2009, his natural kidneys were removed because they had cancerous lesions. Thankfully, it was all gotten during the surgery.

His dialysis can go either way. He has bad mood swings on dialysis days, I try to avoid much conversation on those days. The center is mostly good, there are some errors but I imagine that's the same anywhere.

Now, this doesn't include all of the other trips to the hospital because he fell and broke his neck, a wrong move and any time he could become paralyzed, his legs have neuropathy, he can't feel from the knees down, nobody knows how he is still walking.

We've learned how to take life slower and appreciate things we'd never even looked at before. Each day is a gift. Some days it's unbelievably hard to see that but you still plug along. As I've been told, sometimes you have to take it a minute at a time.

I'm convinced that my husband has an unbelievably tired Guardian Angel!!

[kitkatz]

How long have you had CKD? I have had CKD since I was two years old with reflux disease.  Finally killed the kidneys at age 36. Been on dialysis twelve years.

If you have a career or job, how has it/does it interfere?  Dialysis schedule used to interfere with job, but nocturnal hours are better times.

Are you overall happy with your medical care? Doctors, facilities, etc...  They will do.


And, if you're on it, how has dialysis been for you? Sucks and I hate it.

[Des]

TIME TIME TIME it takes up alot of time.
Time with doctors.
Time without family.
Time in the D unit.
Time waiting for a transplant

and lots and lots more

[chook]

Diagnosed with polycystic kidney disease at age 8 - my Dad already knew he had the disease. Slow steady decline into dialysis at age 51 - pretty pleased that it wasn't earlier.
Luckily I don't work, except in our own business, and that allows me a lot of flexibility. I don't think I'd manage a full time job - not enough energy.
And how am I with the big D? Glad that there's treatment that keeps me going. I find PD, with the overnight cycler, not too much of a hassle and it was working well. Hating the 6 - now extended to 8! - weeks of haemo I'm having while a hernia repair heals. I take my hat off to all the HD people out there.

[tyefly]

I was diagnosed with IgA N   and a few months later started D.....   My creatinine level a few months before diagnoses were perfect...something happened real fast and I went down hill fast.... all of this has been too fast...   
I am spend a lot of time learning everything I can.... So that I can understand....  how to live with this....

    This does effect my life.....  I hate it.... really...doing D everyday  is crazy..... I cant go many places like I use to...  no back packing....  camping is hard cause I have to go where there is 110 v....   I feel like I have a ball and chain...  I hate routine...and this is very  very  routine....    I am a strong person for the most part....  but sometimes       just sometimes .... I sit alone  and  cry..... 

[cookie2008]

I knew I had pkd since I was 22, my father had it so we were checked brother also.  I tried pd in Nov of 07 but I couldnt do it.  I started incenter hemo at age 43 in July of 08, it took everything out of me I went on ssd.  Now I have been on nxstage home hemo since May 09.  Nxstage is so much better.