I joined this site so I could be as informed as I could be. Hello! First off, my name is Mark Thompson and live in Missouri. I’m 41, married for 10 yrs. and have one 7 yr.old son. I’m an active outdoors kind of person that loves to hunt, fish and camp.
In the past, everytime I have had a physical, the Dr. has found red blood cells in my urine. This has been going on since I was in my late teens.
I moved to J.C., Mo. about 10 yrs. ago and in the process had to change Dr’s. I went to him for a kidney infection about 2 months ago, he ran blood work and had my urine tested and ordered a CT scan. After 10 days of antibiotics my kidneys still hurt and my urine was like runny syrup. He told me he was going to send me to a nephrologist and he thinks I have PKD. Needless to say, I was upset because he made it sound like I only had a couple of years left. I had never worried about dying before and had a hard time dealing with my fate. I mainly worried about my wife and son. Would they be okay if I was gone and would my life insurance cover the expenses as well as maintain their standard of living.
In the past I never got up in the middle of the night to go to the bathroom. In the past month I have had to get up 3 times every night. The past two nights I have gotten up and been in a lot of pain, lower back on both sides. Can’t go back to sleep, so I’m up looking at websites trying to find out about PKD and how it will affect my lifestyle. The past month I have looked at PKD.org as well as a few other websites. It looks like I’m going to live for awhile, which is a good thing. I’ve got a lot of living left to do. I go to the nephrologist in January and I’m worried about what he is going to say.
I work in construction and don’t know how long I’m going to be able to do it. The past 2 weeks I have missed a lot of work because of the pain in my kidneys. At times it just about makes me drop to my knees. I’m worried about making ends meet and paying hospital bills if I’m forced into early retirement. My boss isn’t going to put up with me being gone so much, I’m a Union Sheet Metal Worker with a welding certification from AWS. I work up high sometimes and don’t think my job and PKD is going to go well together.
I sure didn’t mean for this to become a novel, I’m sorry if it’s too long.
My question is how long did some of you work, what was your occupation and how did PKD or other problems affect your ability to do your job?
I’m assuming that your doctor is basing the PKD diagnosis on the CT scan. I’m not sure what the chances are that what he/she saw on that scan was PKD or something else. In most cases, PKD is diagnosed from an ultrasound. Does anyone in your family have PKD? In most cases PKD is hereditary.
Based on your symptoms (back pain, urinating multiple times at night, blood in urine, foamy urine that could indicate leaking of protein, etc., I would call the nephrologist’s office and ask for an appointment at his/her earliest convenience. I’d tell the scheduler that you’re willing to take an appointment if someone cancels and you have at least (x) time to get there. You definitely want to find out exactly what the problem is and get the correct treatment for it to protect your kidneys.
I’m not a patient, but worked with several PKD patients in my lengthy social work career. First, I would encourage you find out if PKD is what you have before thinking too far down the road. If you are a welder, you have a terrific skill that can be done in a variety of settings. What about having PKD do you think would adversely affect your ability to do your current job, including working high up in buildings? If you have PKD, you’ve had it for years. However, if it’s the pain and the pain is from the cysts, new techniques in surgery to “de-roof” cysts may help that.
If you are a union member I would hope that your union would advocate for you with your employer and/or help you find a different job if you find yourself unable to do your current job. Keeping your job and your health insurance is one way to keep your stress level under control. In my experience, I’ve noticed that stress and depression increase as financial problems mount and those patients who asked for help to keep their jobs rather than giving up and taking disability often do much better. If your kidneys fail, home dialysis (hemodialysis and peritoneal dialysis) and transplant make keeping your job and maintaining your current lifestyle much easier than doing in-center hemodialysis. Check out the rest of our website if you haven’t already.
I hope that others will respond to your message about their experiences.
Hi Mark,
First of all—you are not alone, and end stage renal disease is not a death sentence!!! Dialysis and transplant are both viable treatments. PKD patients are eligible for the transplant list when their GFR is down to less than 20%, dialysis usually starts when the GFR is less than 10%. There are different types of dialysis to choose from when the time comes and this site has lots of information on all of them.
I will try to answer some of your questions. I just turned 62 and am still working. I am an RN working in a trauma hospital on an orthopedic unit which requires a lot of lifting. I was diagnosed with PKD in 1997 and began peritoneal dialysis in Aug of 2004. I use a night cycler and my abdoman is dry during the day which allows me to forget about dialysis during the day. The only effect on my job was the days off needed to have the dialysis catheter placed and an A-V fistula started. My kidneys have gotten so large that I have no room for a transplant until I have at least one of them removed. I have not had the severe pain that it sounds like you have, although I find it painful at times to bend over to pick things up from the floor, and I do not like anything tight around my waist at all.
Is there a chapter of the PKD foundation near you? That is a good way to meet other people with PKD and get more information about their jobs and the effect of PKD on their life styles. I hope things work out well for you.
Hi Mark-
I don’t have PKD, so I’ve never suffered from some of the symptoms you discribed - but recently had a renal transplant. In fact, I’m guessing I live about an hour or so away from you, we occassionally shop in J.C.!
In answer to your question about working - I never quit working! I was on in center hemo dialysis for 7 months & PD for a year prior to my transplant (both CAPD & CCPD). Personally for me the CCPD was the BEST of all types of treatment, as I did it while I slept, in my own bed… and my days were totally free of dialysis.
Regardless, I’ve found that if you talk with your employer and explain your condition and what the doctors are going to require of you - that you are more likely to get a better reaction/response than just letting him think whatever. Most employers don’t understand the demands ESRD takes on our body. You should also speak with your union rep - he/she should be able to go to bat for you in getting you to a different position within the company if you feel you are no longer able to perform that specific job.
Did the Doc run any lab work on you - such as a renal panel or CBC? I’d be interest in knowing what your lab values were. These are both simple blood test that you can usually have the results back in a few hours.
Be sure to check out the home page on this web site & also check out the Kidney School at: www.kidneyschool.org
I hope it helps…and if I can be of any help let me know! CJ
I really appreciate the information from everyone.
My Doctor has ran about every test on me that he can order. Yesterday I had a really sharp stabbing pain in my right flank. I was able to get into see him in an hour of my call. He had x-rays and blood work done. The x-rays showed I had a compression fracture on my spine from falling years ago, but nothing else. The results of the blood work hasn’t made it back to him from the lab. So I wait.
The pain I have has been keeping me up at night. It’s currently 2:20 a.m. CDT and I’m awake from the pain. I only get an hour or two of sleep due to the pain waking me up. I’m miserable from the pain medicine. It makes me nauseated and extremely dizzy to the point I can’t function on my own. My doctor must have thought my pain was muscular so he put me on Valium. He also put my on 7.5/750 Vicodin. My blood pressure was 153/108 in his office, so in addition to my cholsterol, high pressure, Zyban and ulcer medicine, I have yet another pill to take to help lower my blood pressure. Zyban is being used because as of October 2, 2006, I’ve been smoke free.
I have no right to complain about my health because there are a lot of people in a lot worse shape than I am. I’m blessed to have the ability I have.
I’m not assuming I have PKD, I will have to wait until I see the Nephrologist in January and the results of his tests.
As far as my job, there is no such thing as light duty, period. I have to be able to lift 75-100 lbs. in order to do my job. I have been doing this kind of work for 23 years. It is a tough job and very demanding on a persons body. Most people who work doing what I do end up wearing out their joints and become disabled by the time they turn 50. My doctor has put me on temporary disability until I can get straightened out. I hurt so bad the other day I had to leave work. My business agent is going to bat for me and getting some financial help for me so I can feed my family. It isn’t much money, but at least it will be a weekly check so I can contribute something to help my family. My boss understands my position and is sympathetic, but he has deadlines to meet or the company will lose money. I’m finding out that money is the bottom line of everything. I’m 41 and naive, I guess. I have always thought that there were more important things in life than money.
I’m sorry to hear that you’re in pain, Mark. If it is PKD, on occasion the cysts can burst, and that can be quite painful. So, your being in pain may be an indication that PKD is indeed your problem (or, it may not–we just don’t know yet).
As far as your job, it does seem that the particular job you have been doing may not be one you’ll be able to continue to do. So, one question you’ll want to ask yourself–and a vocational rehab counselor ASAP–is what else can you do with the skills you have. I can tell you from reading your posts that those skills don’t just include welding. You’ve been very articulate in writing about what’s going on with you, and believe me, not everyone has that skill. So, there may be something that is less physical that either involves welding or perhaps writing about welding (manuals of some sort?) that you can do to help support your family. At 41, you’re too young to plan on permanent disability, which will contribute something, but often not much. Since you’ve already been doing this very grueling work for 23 years and most people don’t last 'tl 50 (and end up with permanent joint damage), in one sense at least, this might be a blessing in disguise. You HAVE to make a change. The question is, what might it look like for you?
If it turns out that you can’t continue to do the job you have been doing, think about what your dream job would be. Would it take more job training or more ducation? Getting more education or training may be a way to get an even better job than the one that you have now. A vocational counselor could give you some tests and interview and from that know what your skills, interests and your work values are and help you plan your career. A good vocational counselor can also help you evaluate the training programs and schools so you don’t get ripped off. He/she may even be able to help you find funds to pay for the program you want.
Update on my health…
It turns out I do have PKD. I’m just in the beginning stages and my doctor said it was really nothing to worry about yet. That being said, he thinks I should be tested on a regular basis to keep it in check. My pain is coming from an old compression fracture at T-10 and a few lovely pulled muscles. To date it has cost me 1 1/2 months of work. Countless trips to the doctor and an almost overdose on painkillers. Not my doing, though. My doctor thought I needed Vicodin and Valium to ease the pain. Well it eased 3 days away from my memory. I didn’t care for that very much and am in the middle of locating a different doctor.
As far as my career, I’m going to stay with it for as long as I can. I’d love to live on wishes and dreams, but my creditors have other ideas.
I’ve a ton of skills and no formal education to back them up. I need to find out what my options are for a future career. I’d love to make a living out of bowhunting. I’d have plenty to eat and no money for bills though.:rolleyes:
Did your doctor tell you what your glomerular filtration rate (GFR) is? It sounds like a good idea to change doctors to see if you can get relief from pain without such heavy-duty drugs. Pain medications can further damage kidneys so be sure to ask your kidney doctor before you fill any prescription prescribed by another doctor.
It is possible to keep your job. However, as kidney function drops, symptoms can occur. Some people seem to have more than others. Be sure to let your kidney doctor know if you have symptoms that make feel like you’re not performing at the level you need to perform or take time off. No one wants you to risk your job because of your health. There may be things that your doctor can do so far as medications, diet, etc. Keeping active is good for people with kidney disease just like it is for most people.
I didn’t mean to imply that you should live on dreams. I meant to suggest that if you aren’t happy in your current job or if you can’t continue doing it, you might want to really think about what you’d like to do. Some jobs require education and many require skills and experience. I know people that are very well educated that have unskilled jobs that don’t pay much because they don’t have the skills and experience you probably have.
Have you ever talked with a vocational counselor? Many colleges have counselors that can test you to find out your skills, interests, values, etc. to help you decide what your dream job would be and what it would take to get it. There are grants and loans that most people use to go to voc-tech school or college. Some people go to school part-time and work full-time or vice versa. There may be evening or weekend classes that you could take while you keep working. That was what I was trying to say if I didn’t say it very well.
[QUOTE=Beth Witten MSW ACSW;11860]Did your doctor tell you what your glomerular filtration rate (GFR) is? It sounds like a good idea to change doctors to see if you can get relief from pain without such heavy-duty drugs. Pain medications can further damage kidneys so be sure to ask your kidney doctor before you fill any prescription prescribed by another doctor.
It is possible to keep your job. However, as kidney function drops, symptoms can occur. Some people seem to have more than others. Be sure to let your kidney doctor know if you have symptoms that make feel like you’re not performing at the level you need to perform or take time off. No one wants you to risk your job because of your health. There may be things that your doctor can do so far as medications, diet, etc. Keeping active is good for people with kidney disease just like it is for most people.
I didn’t mean to imply that you should live on dreams. I meant to suggest that if you aren’t happy in your current job or if you can’t continue doing it, you might want to really think about what you’d like to do. Some jobs require education and many require skills and experience. I know people that are very well educated that have unskilled jobs that don’t pay much because they don’t have the skills and experience you probably have.
Have you ever talked with a vocational counselor? Many colleges have counselors that can test you to find out your skills, interests, values, etc. to help you decide what your dream job would be and what it would take to get it. There are grants and loans that most people use to go to voc-tech school or college. Some people go to school part-time and work full-time or vice versa. There may be evening or weekend classes that you could take while you keep working. That was what I was trying to say if I didn’t say it very well.[/QUOTE]
Oh no, I didn’t take it the way you think I did. I understand and I didn’t take offense. I’ve never talked to a vocational counselor to see what I could possibly do career wise. I would also jump at a chance to further my education. Growing up I didn’t have an opportunity to go to college. I had to help support my mom and sisters. I used to work 3rd shift at a factory and go to high school during the day. Mom had a full-time job at a doctors office in the lab, but they took advantage of her situation. She had a B.A. and my Dad had a phd. in chemical engineering. They divorced when I was 5. I didn’t get to see my Dad for years at a time. He’d pop up for 2 days and leave again. Long story short, I grew up taking care of myself and finding out what life was all about on my own. Things for me have changed and I think I have settled into a job making more money than I ever dreamed of making. I hope to keep my job for as long as I’m able. After that I’m going to find out what my options are.
Glad you didn’t take offense. I was hoping that you hadn’t. I hope you’re able to keep your job for a long, long time.
BTW, did the doctor tell you that PKD runs in families? An ancestor or sibling (or child) could have PKD also. The PKD Foundation has lots of information on PKD (http://www.pkdcure.org), including an annual meeting for patients and local chapters. You might want to check out that organization.
[QUOTE=Cherokee;11858]Update on my health…
It turns out I do have PKD. I’m just in the beginning stages and my doctor said it was really nothing to worry about yet. That being said, he thinks I should be tested on a regular basis to keep it in check. My pain is coming from an old compression fracture at T-10 and a few lovely pulled muscles. To date it has cost me 1 1/2 months of work. Countless trips to the doctor and an almost overdose on painkillers. Not my doing, though. My doctor thought I needed Vicodin and Valium to ease the pain. Well it eased 3 days away from my memory. I didn’t care for that very much and am in the middle of locating a different doctor.
As far as my career, I’m going to stay with it for as long as I can. I’d love to live on wishes and dreams, but my creditors have other ideas.
I’ve a ton of skills and no formal education to back them up. I need to find out what my options are for a future career. I’d love to make a living out of bowhunting. I’d have plenty to eat and no money for bills though.:rolleyes:[/QUOTE] When I had first read your posting I had thought for sure that you have Alport’s Syndrome (still do )… and with my experience when a doctor spills words like don’t worry, that’s a sign ! Being at the early stages of any kidney disease is a FLAG … You need to have a simple “GFR” test that will tell you just how much your kidneys are truly functioning it’s like a ultra sound. Sorry if look down the road but hope for the best and prepare for the worst. Here’s a great web site that you need to visit www.nocturnaldialysis.org this site is full of great info on kidney’s and your “options” has a Q&A section (FAQ) … Learn as much as you can that will smooth the way… I’m sure you already know that. Richard C/O Jessie
hi im 17 years old and i have been on peritoneal dialysis since june of 2006 i was diagnosed with PKD at 3 weeks old and it took 16 years for my kidneys to fail i am currently on peritoneal dialysis awaiting a kidney transplant and i have a very very normal life Peritoneal dialysis lets me be a normal teenager and i could do what anyone else my age would do im just scared to go to my friends house thats about all i dont do any more i lead a very normal life and am in the process of studying to become a nurse its a highschool class offered here in california if you have any questions please feel free to e-mail me at sexylexy4u2005@aol.com (excuse the name) well i look forward to hearing from you
your PKD friend,
Lexy
[QUOTE=Cherokee I’m new;11398]I joined this site so I could be as informed as I could be. Hello! First off, my name is Mark Thompson and live in Missouri. I’m 41, married for 10 yrs. and have one 7 yr.old son. I’m an active outdoors kind of person that loves to hunt, fish and camp.
In the past, everytime I have had a physical, the Dr. has found red blood cells in my urine. This has been going on since I was in my late teens.
I moved to J.C., Mo. about 10 yrs. ago and in the process had to change Dr’s. I went to him for a kidney infection about 2 months ago, he ran blood work and had my urine tested and ordered a CT scan. After 10 days of antibiotics my kidneys still hurt and my urine was like runny syrup. He told me he was going to send me to a nephrologist and he thinks I have PKD. Needless to say, I was upset because he made it sound like I only had a couple of years left. I had never worried about dying before and had a hard time dealing with my fate. I mainly worried about my wife and son. Would they be okay if I was gone and would my life insurance cover the expenses as well as maintain their standard of living.
In the past I never got up in the middle of the night to go to the bathroom. In the past month I have had to get up 3 times every night. The past two nights I have gotten up and been in a lot of pain, lower back on both sides. Can’t go back to sleep, so I’m up looking at websites trying to find out about PKD and how it will affect my lifestyle. The past month I have looked at PKD.org as well as a few other websites. It looks like I’m going to live for awhile, which is a good thing. I’ve got a lot of living left to do. I go to the nephrologist in January and I’m worried about what he is going to say.
I work in construction and don’t know how long I’m going to be able to do it. The past 2 weeks I have missed a lot of work because of the pain in my kidneys. At times it just about makes me drop to my knees. I’m worried about making ends meet and paying hospital bills if I’m forced into early retirement. My boss isn’t going to put up with me being gone so much, I’m a Union Sheet Metal Worker with a welding certification from AWS. I work up high sometimes and don’t think my job and PKD is going to go well together.
I sure didn’t mean for this to become a novel, I’m sorry if it’s too long.
My question is how long did some of you work, what was your occupation and how did PKD or other problems affect your ability to do your job?[/QUOTE]
Welcome to Home Dialysis Central, and thank you for sharing your experiences with PD. It’s great to hear that it has allowed your life to be very normal while you wait for your transplant. The patients you care for in the future as a nurse will be very lucky to have you–since you know what it feels like to be on the “patient” side of the medical system, you will be able to offer a lot of hope and understanding. Nursing is a terrific field, and a great future goal!
I don’t have PHD, but I am a dialysis patient. I tried to work after starting PD, but it was too hard on my body. I was a cashier at a grocery store. Since I was on my feet all day, all the fluid would go to my feet and legs and I stayed swollen all the time. I worked for a month, then went on disability and started college. (I’m 19, btw! lol)
Unregistered’
I had one kidney removed the end of January and am temporarily on HD until my abdoman heals. My plan is to return to PD in the next few weeks.
Ginger, Thanks for taking the time to reply. Sounds as if I could go on pd, until they get to large. They were preparing me to start some kind of dialysis,
but oddly enough when I went to see the doc Wed, he told me that my kidneys kind of bounced back a little, so there is no need to do anything right now. What the hell, I’ll take this reprieve, knowing that I will have to do it sooner or later.
