New to DaVita

[ALD]

Hi everyone,

I am new to this site. In fact, this is the first time I have ever been to a support group in any way.

A quick summary, my husband developed renal failure when he was 20 years old and I was 18. He is now almost 32 and I am 30.

Over the years we have dealt with Hemo dialysis, PD dialysis, a transplant, a rejection, and now he is back on Hemo and currently trying to get back on a transplant list. He is having great difficulty but I won't get into that now.

In the course of this time he has been in and out of the hospital so many times I have lost count. In fact, he has been in the hospital more than he hasn't - or at least that is how it feels sometimes.

Currently he is on disability through his work - where he wasn't at for very long before his transplanted kidney rejected.

Things, obviously, are very rough which is why I thought I would come here. I feel so worn out and lost. He doesn't seem to be getting any better or even staying the same, it seems his health deteriorates every year, there is hardly any money, and I am so stressed that I just don't see myself doing this for very much longer. I then of course feel guilty that I feel that way.

There are other factors involved too, such as his attitude and behavior (which he had before he became ill so who knows what the situation would be like now anyway), the fact that we have an eight year old daughter who needs to be looked after and since I work full-time and sometimes part-time I feel overburdened.

In any case, I am not really looking for anything specific here but I guess if I can find someone going through similar issues like me, maybe it will help me in dealing with them.

I think that's all for now. Please feel free to reply and tell me anything you like...

[Nanner60]

My husband has not been through as much as yours and we are older but I understand what you go through.
This is hard on the entire family and you as the caregiver have the most stress in dealing with the household and day to day chores, plus being the one who works outside the home as well.
I don't have any great words of wisdom. Just want you to know that this is a good place to come to if nothing else but to vent.
There are not too many caregivers here but many people who have sympathetic ears.

[flipw]

He should be on Social Security Disability and Medicare if he isn't already. There are also state medicaid programs available. I've managed to keep a positive attitude about dialysis and that's one reason I've been so successful with it. I'm 60 years old, live alone and manage a pretty normal life. My three trips a week to the center don't take that much time out of my life and I usually feel pretty good.

It's tougher on a caregiver than it is on the patient. You need to plan some things for you and your daughter even if it's just a trip to the park. There are plenty of people on here to help and support you so don't hesitate to call on us.

[chefnancy]

Welcome. You are among friends here. There are several caregivers on this site and also many patients who really appreciate the selflessness of caregivers like you. Come here as often as you like to get support and to vent. But Flip is right. It is important that you take some time for yourself on a regular basis even if it is just locking the bathroom door and taking an uninterrupted bubble bath. You are under a lot of stress and eventually it will begin to be reflected in your own health, so take care of yourself so that your daughter will have at least one of her parents available as she grows older.

[SHORTMAMA53]

ALD, i know how you feel. I work at a Davita in Ohio. Currently my husband has been seeing a nephrologist for kindey problems. We see a surgeon the 30th of this month to see about getting a fistula put in. On the brighter side, his brother has told us that he wants to be tested to see if one of his kidneys will work. I finally got a call from the transplant team yesterday at a local hospital to schedule an appt. Hoping they dont give us an appt 3 months away. I realize that he will most likely have to start dialysis before he gets a transplant (if the brother is a match). But it seems like I deal with it ten hours a day -- 5-6 days a week. And then I come home and deal with it all over again. Stress level is up there pretty high. He is taking Aranesp shots once a week at a local hospital near us to get his level back up. Right now he is so wore out and wrung out it isnt funny.

[ssnana]

All

Like ALD I, too, am new to this. I tried this site last April just before my husband's health took a serious turn for the worse. He is 57, on PD, and is not a transplant candidate. His health deteriorated to the point that I had to take a leave of absence from work starting 6/5/08. I'm now out of paid time off and FMLA ends 7/28. After that I can take another 6 months leave so I can keep our insurance at a "reasonable" rate until that's over. After that we are out of luck. Medicare became his primary 7/1 but if I can't find work I can do from home (telecommuting) within 6 months we will have to sell our house, etc. etc. I'm beginning to see how caregivers can burn out. Any advice or encouragement would be appreciated.

[flipw]

Is he receiving Social Security Disability? If not, that should help.

[chefnancy]

To all you caregivers, I can't imagine the stress that you go through. You are doing God's work in taking care of your loved ones, but you need to take care of yourselves as well. Use the social workers at your dialysis centers to help you deal with both the stress and the financial woes. They are very well educated in all the programs that can help you and they are also good at helping you talk out your stress.

[ssnana]

My husband is receiving social security disability but it barely covers our mortgage payment. As long as I was still working we could make it by taking a little out of his IRA each month. Now that I'm out of paid leave we are taking ALOT out of the IRA each month and will run out of money in about a year if we are very careful. I'm searching every day for some kind of work I can do from home but it is difficult because there are so many scams out there and the good legitimate jobs are scooped up the minute they become available. I spend time on the internet looking for resources every day but have come to the conclusion that there's nothing out there. It's very depressing that I have worked over 30 years, played by the rules, paid my taxes and now that we're in a pinch we have to lose everything. Very discouraging.

[Nanner60]

To all you caregivers, I can't imagine the stress that you go through. You are doing God's work in taking care of your loved ones, but you need to take care of yourselves as well. Use the social workers at your dialysis centers to help you deal with both the stress and the financial woes. They are very well educated in all the programs that can help you and they are also good at helping you talk out your stress.

Thank you for your kind words of recognition.
Fortunately my husband is able to work since he does programming and works from home. However we still struggle financially with all the medical bills.
We were pretty much told by the social workers that we are between the cracks.
We make too much for assistance but not enough to pay all the bills.

Stress is another story. I have found great help by e-mailing a couple of people I have met through this site. There is nothing like having someone to talk to who knows exactly what you are going through. We call each other and e-mail and hope to meet in person some day.

[flipw]

I still sell online and have for many years. It provides a good supplemental income and I actually work from home. It could be something you might want to consider.

[ssnana]

I'm grateful to see there was a response. I've tried several of these forums and wish we could communicate more in "real time". flipw, what do you sell online? I've been looking and looking and am afraid of scams. I don't think I'd make a good salesperson but online might be different. Do you have to hunt for customers or do you start with a list of existing customers that you service?

[flipw]

I have a bookstore on Amazon. Before that, I sold on Ebay for about 10 years.

[ssnana]

Excuse my ignorance but how do you "have a bookstore" on Amazon? I'm really open to anything I can do from home and am finding I have so much to learn!

[Pancho3]

Financials

Everybody who has posted replies are true in what they say.

I was working and earning a good salary when i became too sick to continue.

I went on state disability and immediately applied for Social security Disability, I was not yet on dialysis at that time but my kidneys were just not clearing all of my meds out of my system and I was basically on a continual overdose. I am diabetic also.

Anyhow, back to the issue. We did some figuring and figured with my wifes income, and my S.S.D. payment when it kicked in.( Had to wait 'til I started dialysis) we would not be able to keep the house. Besides, we were 45 miles from the nearest dialysis center and sometimes the road would be closed in the winter. So we sold the house, made a nifty profit and invested that. Bought a giant R.V., and paid off all our debts. Then moved the R.V. to the city where all the dialysis centers were.

The point I'm trying to make is if you cannot increase your income, then you MUST take all steps possible to lower your standard of living. That is a cold, hard fact. You will be better off in the long run.

The other posters are right that you need to work very closely with your social worker. There are programs and people to help you through this.

Talk to the people you owe money to, you might be able to restructure some of your debt. And don't be afraid to throw the word " Bankruptcy" at them. Some money paid on a debt is better than none.

Stay Well and keep your chin up.