Any suggestions would be wonderful

[grannyoftomany]

[size=18]Hello. I am a wife of a polycystic man. He is getting bad and I can not get him to the doctors.
After watching his father and uncle and other family members cross due to complications ... after years of illness.... he has it in his head that he aint going to the specialist.
His blood pressure is sky high.. he has all the symptoms of shut down happening.
He flip his four wheeler last month. Since then he has lost a lot of weight, his kidneys are on fire... he is having a hard time walking.. sleeping... concentration... memory loss... chest pain.. major back and stomache pains.. side pains.. he has mood swings ... headaches.. sick to his stomache.. urination is more often.. yet I dont hear that much coming out. He wont let me see if its turning brown or darker in any way.
His face gets red.. his ears too. He looks as if he has aged 20 years in the last month. Even his beard and mustache have turned gray seemingly over night.
He looks like heck.
I don't know what to do. I tell him there are many advances in this area yet he says there isnt.
He wont allow me to make him an appointment with the family kidney doctor.
He insist on drinking coffee and soda as his only means of flulid.. he puts salt on everything. He dosent know it but I switched the salt with that fake stuff.
His family sees he is getting worse and they think I should pick him up and force him to the doctors. I know my hubby... he wouldnt go. I've tried. I've gotten him near there and he leaves.
I personally think his kidneys are shutting down.. yet he is shutting me out. He hides in the bedroom all the time and wont talk to me.
Last month he told me he thinks he can give me another two years. Since then he wont speak on the subject...
Some one ... anyone.... any suggestions.. any magic bullets.. any words of advice.. anything I can use to get him to re-elveuate his life with poly.
Not one member of his family lives past 55. He is 47. He use to abuse drugs and alcohol... that most certainly had to contribute to him lossing even more years.
He can hardly function.. yet he goes to work.. bent and hurting. He goes to work.
The company put him on thrid shift by himself. So his task would be easier on him. My fear is that he is there by himself. He is getting weaker by the day.
Thanks
at least for listening...
Val

[DoriSchatell]

Val, I'm so sorry to hear that you are going through this with your husband. He is certainly scared to death (perhaps literally), and having seen with his own eyes what others in his family have gone through, it's hard for him to believe that things could be better for him. This is actually a very common reaction. He needs to learn more to overcome his fear. Since telling him in generalities that "things are better now" isn't helping, it may be useful to learn some things so you can be very specific about HOW things are better and what you need to do.

A few ideas:
1). Contact the PKD foundation. Since that is the specific disease he has, and they know all about it, it's quite possible that they have some ideas or even someone who has been through this same thing that he could talk to. It would help him a lot to talk with someone else who had the same fears and came through the other side. Their website is http://www.pkdcure.org, and their toll-free number is 1-800-PKD-CURE. They are located in the midwest--you could still call them today. Please call them.

2). If, as you suspect (and as it sounds) your husband's kidneys are now failing, he does need to see a nephrologist (kidney specialist). Once his function drops to 15% or less, he needs kidney replacement therapy to live--or he won't even get those 2 years he promised you. People with PKD often do very well on dialysis or with a transplant, if they don't have other illnesses (high blood pressure, diabetes...that damage the blood vessels). I know someone whose kidneys failed in 1966--and she's still working full-time today after using several different types of dialysis and having a total of 4 transplants, the last of which is still working. You can read about her--and learn a lot more--in our free, on-line Kidney School at http://www.kidneyschool.org. The Coping module might be just what your husband needs right now...

3). Learn about NEW ways to do dialysis. If your husband's family members used in-center hemodialysis 3 times a week, felt lousy after each treatment, had very limited diets, and then didn't live long, it's no wonder he doesn't want to do the same. There are other, better options. The non-profit Medical Education Institute, which runs the Life Options program, also has another site called Home Dialysis Central where you can learn about ways to do dialysis at home (or on the road) that would allow him to have more energy, fewer diet limits, control of his schedule, etc. Please check this out at http://www.homedialysis.org.

Incidentally, you mentioned switching the salt in the shaker to "the other stuff." Most salt substitutes contain a lot of potassium. Failing kidneys don't remove potassium, which can build up in the body to fatal levels. So, while salt is bad, potassium is worse. It's probably best to switch back.

Please do feel free to write back, we'll help however we can.

[grannyoftomany]

Thank You Dori for your quick reply. I read it a few days ago and went on an adventure, via the net. In a quest to learn more.
Things here at home got rather ugly for a day. I was voicing my opinion about the lack of caring on my hubbys' part.
I told him I understood he is scared of living, thus, dying the way his father did.
I told him about posting here and the advice. I read stuff I printed off line and told him of people I have spoken too and how far the medical world has come to helping poly people.
I told him I knew he was scared but he had to see that I was and am terrified.
I made him an appointment with MY family doc. He agreed to go get his blood pressure checked. He did that today. He is on Diovon now. And he has agreed to start supplimenting his diet with a "man's multi vitamin". I can not ask for more that that. Not at this point.
I tossed out the fake salt and replaced it with the real McCoy. That taught me a lesson. I will never again make sudden changes without seeking answers and advice. To think that I could have hurt him worse is beyond comrephension. I know this world is new to me.
It shouldn't be. I watched my father in law and other members of the family battle Poly for years. But watching and not getting involved in the day to day aspects was my own doing and my own ignorance.
I guess I always assumed that when the time came for me to HAVE to know this stuff I would just seek guidence from the women who lived through it. I'm sure I will continue to do so. Only this time with the forethought that times have changed. And what they had to do is not necessarlily what I will have to do. Education on Poly and how to help a husband cope and live with this.. is my responsiblity.
I am grateful for the assistance you gave me. I may seek other advice from time to time or just stop by and let you know what is going on. Or, if allowed, just talk.
Since he has taken to the bedroom most of the time I am alone to think alot. Sure the grandgirls we are raising keep me busy too. But, he is never far from thought. Some days I'm just lonely.
Cross your fingers for me... and Jeff.. maybe he will agree to see Dr Gandy after all. Dr Gandy is the family kidney doctor. He knows jeff but Jeff has never been to his office. Still too scared I guess.
Until then, I will keep reading the research and checking out equipment. Like those home Hem machines. Jeff alreadys said he doesnt want to go to a clinic setting.
Take care
Valrie

[Beth Witten MSW ACSW]

You say that your husband's father had PKD and other relatives did too. Has your husband been tested for it? Just because relatives have PKD doesn't mean that you will have it. There is a 50-50 chance that he has it, but that means there's a 50-50 chance that he doesn't. Some problems that people with PKD can have include pain from the cysts that can be on kidneys or other organs, headaches (could be due to a swollen blood vessel), high blood pressure, urinary tract infections (did his doctor ask for a urine sample?), and kidney failure.

You say that your husband flipped his 4 wheeler a month ago. Did he have any testing to see if he had any internal damage? It might be helpful to know if he bruised his kidney(s). I'm not sure how the doctor could tell that now, but it would be worth asking.

You say that he has high blood pressure. Has he had this for a long time or is this a recent problem? Does the doctor know what is causing his high blood pressure. Sometimes people with kidney problems have high blood pressure because kidneys help to control blood pressure. Other times, having high blood pressure damages kidneys. Still other times, high blood pressure can be due to narrowing of a blood vessel to the kidney (renal artery stenosis) keeping the kidney from getting the blood it needs to stay healthy. Opening the vessel helps the kidney stay healthy.

It sounds like your husband is very depressed by the symptoms you report. He is isolating himself, going to bed, and refusing to talk about what's bothering him. Unfortunately, this is a common reaction. However, it is also the absolute worst thing someone can do especially if they let this go on a long time. Being less active will make him lose muscle strength and endurance fast so he is able to be less active. Increasing activity is one way to overcome depression. Talking with someone who can help you see the light at the end of the tunnel is another. Antidepressants can help too, although sometimes it takes some experimenting to find ones that work for any one person and they all take time (usually 2-3 weeks) to notice much difference.

If he does have PKD, it would be good if he could find other people to talk with who have been living with PKD and enjoying their life in spite of it. The PKD Foundation has chapters throughout the country. You can find their website at:
http://www.pkdcure.org

People with PKD are on all types of treatment for kidney failure -- peritoneal dialysis, home and in-center hemo, living donor and deceased donor transplants. People with PKD usually do better because they have higher hemoglobin/hematocrit levels. A low Hgb/Hct level makes you weak and tired, short of breath, and unable to do much before you get worn out. I know people with PKD who work, travel, raise families, and live full lives. Your husband has a choice. He can choose to ignore his symptoms and let nature take its course OR he can choose to see the (scary) kidney doctor, find out what's wrong with him, take that diagnosis by the horns by learning all he can about how to be as healthy as possible, and he can live life as fully as he can as long as he can. I hope he chooses the latter.

[grannyoftomany]

Good Morning Beth
Yes he has PKD. He has known for over 20 years the cyst are there. He has a Ultrasound years ago and a CAT scan a year ago.
The high blood pressure was first noticed 7 years ago. Althought the doctor didn't say or do anything at that time. It took 7 years to get Jeff to return to the doctors. Which was a year ago. His BP then was sky high. 197/12something... He did take BP meds for a few weeks but due to the dizziness and light headedness he stopped. He said it interferred with his job. Hi first priority in life has always been to work and support his family.
Over the course of the past year he has changed. Subtle, hard to notice for the average person... but change the same.
He has always had back pains, side pain, a back covered in pimples and boils. This year everything became more intense. Waking up due to the pain. Headaches so bad he doubled over. Eating less and less. Vomiting more often. Restless legs while he sleeps. Even times when I had to nudge him when he seemed to stop breathing in his sleep.
His face would turn beet red. His mood would swing from normal to just nasty. Which is uncommon for him.
He laughs less and less. He interacts with our children and grandchildren less and less. He no longer spends much time with friends.
He doesn't even eat at the table. He takes his supper to bed. Claiming that by the time he is done eating he has no energy and is too tired. I know that is hogwash. He is pulling away.
Some how he has it in his head that if he pushes us away... we wont hurt so when he goes.
I'm sure you already figured out that his "manhood" doesn't stand up at attention anymore. We always had a healthy sex life. Now it is non exisitance. He feels like a failure. He gets so mad at himself for it. Nothing I say helps. All I can do is hug him close and say I love you.
The CAT scan showed his prostate is the size of a 65 + year old man. My husband is 46. The CAT scan shows it is not lumpy or bumpy.. but smooth and normal shape. The doctor does not feel it is cancerous.
The outbreak on his back started when he was 23 and has gone from his back to his chest, buttocks, head, neck.. arms.. and legs. He is so embasrassed by them he refuses to wear shorts or go topless in the heat. He even stopped swimming and water skiing years ago.
He still works. He goes everyday. I have seen him crawl out of bed.. lift himself up and force himself to move. Yet he does it.
In 24 years he may have missed 6 days of work.
When he had the accident last month on his four wheeler. That was the worst I even seen him. He missed 6 days of work in two weeks. I know his finger tips were killing him. He ripped two of them off on the rocks out back.
He hit his head when he shoved his face and ear over the rocks too. Thankfully that part healed nicely.
Since that accident I have noticed that he is losing weight ih the limbs. He is still eating. (Actually better then usual, the last couple of weeks. I always make him a big breakfast and he eats only lean angus beef. That a local farmer does for us. No store meats. ) Yet I also see his belly extending and now there is a rash forming ontop of the already present boils and blemishes on his back.
I know he has peed blood. I caught him once. Now he locks the door.
I also noticed that if he drinks a beer or two with visitors. I can smell that bitter sweet odor all the way at the bottom of the steps. It use to be a smell I only noticed when I entered out bedroom.
You know since the very beginning of our relationship... many many years ago. He told me about the family curse of poly. And he told me what to expect, should I decide to stay. I stayed. We use to speak open about this subject until the CAT scan results came in. That is when he got quiet.
After our blow up and yelling match earilier this week, (we have never once had a yelling match in all these years) He is being open once again. He did see the doctor. He is on Diovan now. He is taking Centurm again. I seen him drinking water. He even went and actually got his blood work done. All he asked of me was for me to stay home and let him do it.
I am not stupid. He didnt want me telling Dr Dave about the other problems. He only went to get the BP checked. I knew Dr Dave would order a blood work up. That will let him know what is going on. Rather Jeff tells him or not.
He still refuses to see Dr Dan Gandy. I hope he changes his mind before Dr Gandy retires. Every year he threats to do so. I don't know if you know Dr Gandy .. hes here in PA. But he is the best of the best. If anyone in this area knows PKD it is him. He has cared for many of the family and still does.
Well, today is dinner at my mother in laws. Christams is soon to be here. Yesterday was Hannukka.
Please, accept my deepest thanks for answering my post. For reading.. and allowing me the opportunity to exoress myself. The writing alone has helped. The replies helped more.
May all of you have a wonderful Christmas and Happy Hannukka.
Time to get a shower.
OH, before I forget, the family is planning on having a talk with Jeff today at dinner. He doesn't know it. If he did, he wouldn't go. Maybe someone there will say the one word that makes him rethink the outcome he has in his head... about poly.
Hugs
Val

[DoriSchatell]

What sort of work does your husband do, Val?

I'm glad to hear that he's at least back on the blood pressure med. Blood pressure as high as his was could damage his kidneys and put him at high risk for stroke or a heart attack even if he didn't have PKD.

It's possible that he really is too tired to come to dinner. In most people, having less kidney function means making less erythropoietin (EPO)--a hormone that tells the body to make red blood cells. So, most people whose kidneys are failing have anemia, a shortage of red blood cells. Anemia causes severe fatigue, feeling cold all the time, fuzzy thinking, impotence (but high blood pressure--or blood pressure drugs can also cause this), and other problems. Most people with PKD make enough EPO that they don't have anemia. But he might.

If your family talks with him at dinner, I hope they keep their messages along the lines of, "we love you and we want you to see your doctor because we believe there is HELP for you, and we want you around for a long time." That might get his attention. Did you talk to the PKD Foundation? Again, I truly believe that if your husband could talk to someone else who also has the problem and has worked through his feelings, he might be able to believe that there is hope. He sounds pretty hopeless now.

[grannyoftomany]

Hi Dori
I'm very glad he is on the BP meds. He is also taking centrum now. I'm sure after a few weeks or so he will be feeling better.
The talk was not held during dinner. His younger sister came to the house afterwards. She and I had a long talk and then we all talked.
She is a smart cookie... that one. She too is a Poly patient. She sees Dr Gandy. She also worked in the medical field for years. Running my docs office.
She gave me some great words of advice and she simply told Jeff that he aint dead yet and he should stop worrying about dying and learn to live while he can. She also told him how well she is doing with the meds.
Jeff got his blood work done too. By this weeks end we should have the results.
He also decided to take control and do his own blood pressure reading daily. Its digital with memory. So I can check it when he isn't looking. Right now he is running 134/87 That is way better then before.
As for his job. He is a member of the union for plumbers and pipefitters. He is a pipefitter and a manchinest. One of only three in the union. He loves his job. Its not hard on him and the work is not to stressful. He makes what the welders need and sometimes when he travels to power plants he helps with the large pipe fitting and crawls inside of giant boilers to fix them.
He tells me the hardest part is fixing the messes the engineers make with the blueprints. He is a firm believers they should spend a good year in the shop to learn how to do things right. lol
Right now he is outside hanging christmas lights. That amazes me. Normally I have to get one of my sons to come over and do this stuff for me.
Gotta go.. he is asking for some help.
Val

[Beth Witten MSW ACSW]

It sounds like your husband has lots of great support and you're right that his sister is a "smart cookie." Hopefully she helped him to see that he can focus on dying or focus on living and it sounds like that kick-started him into wanting to take more control. I'm thrilled to hear that he's had his blood drawn and that you'll know the results soon. I'd strike while the iron is hot and suggest that he ask for information from the PKD Foundation. He may learn things from their materials that he doesn't know. I'm also glad that he got out of bed to hang Christmas lights. Hopefully this means that he will join the family in the holiday celebration(s).

[grannyoftomany]

Good Evening
I visited that PKD site on the 17th I signed up for the infomational newletter and I have also been to the other sites listed above.
I also recieved a box today containing a video of testimonials of various people who live full lives with PKD and work. I started to watch it today. But with the holidays soon to be here I have much to do and so many people stopping by to visit.
To be honest, right now I am just wore out and the weekend isnt here yet. This Fibro is kicking my butt right now. You would think after living with it for 30 years I would be use to it. Thank goodness for aleve. Its the only thing I take now. I stopped doing drug therapy many years ago. When the side effects mimick fibro its hard to tell when there is a flair or just a reaction. Besides 3 years of ibrophen started to eat a hole in my bellys lining. Everything else like flexril and elivil are wonderful helpers... but only on very rare occassions and only for a few day at a time. Fibro is best lived with ... with plenty of movement and lack of sugar. High protein diet and lots of hugs from kids. Best thing in the world for anything.
Time for bed.
Take care and talk again
Val

[grannyoftomany]

Hello, I just thought I would let you know that we got Jeffs test results back. Other then his cholestrol being 6 points higher then it should be. All his test came back within normal range. I am so grateful. What a nice early Christmas present that news was.
Jeff was relieved.. to say the least. He has been more his old self each day. He even went to the bowling lanes to visit some old friends.
It is so good to see the spark back in him.

Merry Christmas to all of you.

Thanks
Val

[DoriSchatell]

Hi Val,

So your husband's kidney function tests (GFR, creatinine, protein) came back normal? That's terrific news! Cholesterol levels that are 6 points high are not anything that would immediately harmful, though it's good to keep an eye on.

It does sound like his blood pressure is something he needs to keep on top of--it's great that he'll take the BP meds. He had a lot of symptoms, though, too. Some of those may have been caused by his fall, or from the stress of thinking his kidneys are failing. But if the symptoms don't go away, it's important to keep looking for the reasons. Maybe now that he's not so worried about his kidneys, he'll be less afraid to get other medical care that he needs.

This was definitely a terrific Christmas present! :D