How do I cope?

[Michaela]

My fiance was diagnosed with IgA Nephropathy in Feb of this year. He started on steriods and immunosuppressives. We were offically engaged in May and started planning our August '07 wedding. Last month his nephrologist told him that in reviewing his labs over the last 7 months she determined that he would need a transplant or start dialysis in 6 months. We were both a bit shocked as we felt the drug treatment was working. He wanted to start the transplant work up but we have a 6 month waiting period with the insurance as his job switched plans in August. He hasn't felt well for months and is starting to stay home from work 2-3 times a month due to being sick, likely the uremia. The ironic part of this whole thing is that I am a registered dietitan with 2 years experience working in a dialysis facility. I know how to deal with this professionally but now that it is personal I am at a loss. I feel like I am a care taker now and not a fiance. I feel like our relationship is one sided, I constantly give and all he does is take. It was never like this when he was well and I am afraid that this is the way things are going to be. This was supposed to be the happiest time of my life, planning my wedding. But now I don't even know if I want to get married because of how horrible our relationship is now. I am hoping that all these changes are related to his illness but I am not sure how to make it through all this.

[Beth Witten MSW ACSW]

As a renal dietitian, you have such great knowledge that should help you be a wonderful resource to help your fiance learn what he needs to know to start to manage his illness. He is understandably reacting like someone with an acute illness, wanting someone to take care of him. He's also likely very depressed and fearful about what his future will be like when his kidneys fail. For you it may be frightening too because you've seen people who haven't done well on dialysis. But there are people that do very well on dialysis and there are people that continue to have very loving relationships in spite of kidney disease and kidney failure. You might want to read a booklet called "New Life, New Hope: A Booklet for Families and Friends of Renal Patients" that you can find linked under Free Materials on our home page.

This booklet talks about how to put the responsibility for his illness back on him...with your love and support. You are his fiance (and planning to become his wife), not his nurse.

Is it possible that he's afraid that he's going to lose you and he's subconsciously testing you to see what it will take to make you leave or to show him that you do love him by staying? Could he could be distancing himself to protect himself from the hurt he will feel if you do leave him? Both of these are pretty common in situations like this because people with kidney disease often feel like "damaged goods" and unlovable. I've talked with young men and women who believed they would never marry or have children. Many went on to have families.

I don't know how long you've known each other or what made you decide you loved this man enough to marry him, but those are the things to think about. Remember, in every relationship and every marriage, there are rough spots and times when at least one of the parties is thrown off balance. A strong relationship can weather these times by taking the time and figuring out what each can do to support the other.

You might want to consider couples counseling with a counselor who has experience working with couples where one has a chronic illness (preferably kidney failure). You can also get support through online support groups like Dialysis_support:
http://health.groups.yahoo.com/group/dialysis_support/

Another thing to remember is that if he has to do dialysis down the road, home dialysis is an option that allows more freedom and flexibility than in-center dialysis and patients that do it generally feel better. You can learn about home dialysis at:
http://www.homedialysis.org

So far as his insurance and getting worked up for a transplant (which would be a good thing)....Why does he believe he has a waiting period? Has anyone mentioned the Health Insurance Portability and Accountability Act? If he had health insurance from his company before AND he didn't have a gap in coverage longer than 62 days AND if he'd had that insurance long enough, he should be able to get a notice that his coverage was "creditable" from his last insurance. HIPAA allows someone who had creditable coverage without a significant gap to use months in the prior plan to meet months toward a pre-existing condition waiting period in a current plan. Read the insurance booklet and look for HIPAA information. Talk with the state insurance department about HIPAA. You can also read frequently asked questions about HIPAA on the Department of Labor website at:
http://www.dol.gov/ebsa/faqs/faq_consumer_hipaa.html

By the way, assuming he (or you if you marry him) has enough work credits (Social Security can advise on this), he will be eligible for Medicare coverage as a secondary payer after his employer plan pays when he gets a transplant. Medicare can be backdated 2 months if he is worked up for a transplant within 2 months of getting it. Of course, this generally only happens if someone has a living donor. Is there anyone who has offered to donate a kidney to him? If he is waiting for a transplant and starts a home dialysis training course before the first of the 3rd month he's on dialysis, Medicare can start the month dialysis starts. After 30 months, Medicare would become his primary payer for any Medicare covered service. He can keep Medicare for 36 months after transplant or indefinitely if he's on dialysis. There are a number of materials that discuss financial aspects of kidney disease, including a booklet on our site called "Employment: A Kidney Patient's Guide to Working and Paying for Treatment."

Speaking of working, he should report his symptoms to his doctor and make sure that his doctor knows that his symptoms are interfering with his job. There may be things that the doctor can change to help him feel better. If he's anemic, it's likely that he's having a hard time working so controlling anemia can be a big step toward helping patients keep their jobs. We encourage people to keep working because of all the benefits work brings -- sense of well-being, socialization, financial security, and health insurance to name a few.

I hope that you and your fiance are able to weather this storm together.

[DoriSchatell]

Actually, we took the "New Life, New Hope" book off of the site because it was hopelessly out of date and is being revised. Instead, I recommend that you and he work through the "Coping" module of Kidney School, at http://www.kidneyschool.org. But I did want to add some things to what Beth has said.

I'm not a social worker, so these observations come from my contact with thousands of people with kidney failure. There is no doubt that getting a diagnosis like this is a huge blow, and part of what you're seeing is how bad your fiance feels physically as his kidneys fail, plus his terror of the unknown, depression and grief about his view of what his future would be like, and anger that this is happening to him. And, you're probably having these feelings yourself, too. This is very normal, and it takes time to work through these strong feelings. This may be why it seems your fiance is doing nothing but taking--he's in crisis mode right now. You both need support, and counseling is an excellent idea before you give up on him and on your future. I went to work in 1989 for a woman who started a medical communications company and wrote a book about her experiences as a home hemo partner for her husband--whose kidneys failed when he was in medical school. 33 years later, they're parents of two grown sons and have a beautiful granddaughter together. He's still a doctor today.

As a renal dietitian, you were most likely working with folks who were getting in-center hemo 3x/week for 3-4 hours (the national US average is 3.5 hours per treatment). 92% of US patients get their treatments this way. You may have even told your fiance what you saw that this was like. But, as you know, kidneys work 24/7, 168 hours a week. Pulling off 45 hours worth of fluid and wastes in 3.5 hours causes a lot of the symptoms that people associate with kidney failure--and also necessitates the extreme diet and fluid limits that most patients need to deal with.

PD is an excellent first treatment that your fiance' could do at night (with perhaps one daytime exchange) so he can keep his job. These days, home hemo can also be done as short treatments (2-3 hours) 5-7 days a week. With short daily home hemo (SHHD), fluid levels are much more normal from day to day, folks tend not to need blood pressure drugs, and they feel very well. Or home hemo can be done at night for 7-8 hours 3-6 nights a week. This is called nocturnal home hemo (NHHD), and folks who use this treatment eat a largely normal diet (they need phosphorus SUPPLEMENTS), sleep well, their sex lives are good, they keep working... All dialysis is NOT the same, and a young man like your fiance can do one of these better forms while he waits for a transplant. Check out the stories and message boards on Home Dialysis Central http://www.homedialysis.org to learn how well people can feel and how full their lives are.

One reason that your fiance may be so needy and depressed is that he has no hope for the future. He's afraid he will die or that even if he lives, his life won't be worth living. You may fear this as well--it's very natural to feel this way. But with better treatments, his future and yours can be bright.