I feel like a selfish idiot…my husband, age 33, has ESRD and is waiting for catheter placement to start PD. He’s been out of work since June 05 because of his illness. I have 2 kids and he has 1 and we have full custody of all three. I have a history of depression although I’ve been stable for several years, also I have a history of adjustment disorder. We’ve had to sell our home and cut WAY back but we’re doing all right, not doing without anything important…
My problem started when we started trying to get him scheduled to have his PD catheter placed to start treatment. He’s been so sick feeling lately and finally, after 6 months of waiting they decide to get started, then call me and tell me it’s going to be next month before he can schedule an appointment to ‘talk’ with a surgeon. I’m aware that it takes several weeks for the catheter to be ready to use after placement…do these people have no compassion at all? I’m so fed up, and unfortunately when I get angry, I get depressed and start having all these terrible anxiety symptoms.
I feel a tremendous amount of pressure to be everything for everybody and to make sure he’s taken care of along with all our family’s other needs, but I don’t know how I’ll do that if these symptoms don’t subside. I’ve got migraines, ulcers, anxiety attacks, chest pain and I don’t know how long I can keep supporting 5 people with all these symptoms, much less do everything else I need to do for my family.
Please, if you have advice, share!
I’m so glad that you found our board and posted your message. The first thing I would do is to call the doctor’s office and let them know who putting off the catheter placement another month is affecting you. Here are some questions I’d ask:
- What is the reason for the delay?
- How soon after your husband and you talk with the surgeon can the surgery be scheduled?
- How long after that can PD training can start?
- How long does training typically last for their patients?
If the delay is because the best catheter surgeon in the area is very busy and if your husband’s health is pretty stable, I’d try to look on the delay as something that needs to be to get your husband off on the best start to successful PD. If your husband’s health is getting worse and he may not have told his nephrologist all the symptoms that he’s having and how they are negative affecting his functioning and quality of life and yours, I’d ask if there’s any way to get that appointment with the surgeon sooner. I don’t know if he has a vascular access already, but if he does and he’s very ill, he could do hemodialysis before he starts PD.
The other thing that may be affecting how quickly they start your husband on PD is that his kidney function has to be at a certain level for him to qualify for Medicare. If he has other health insurance, this may not be as big of an issue, but if he doesn’t, it would be best if Medicare could start the same month that he has his catheter placement. When someone starts on dialysis (either hemodialysis or PD) and gets into a home training course (hemodialysis or PD) within the first 3 months, Medicare is backdated to the first of the month dialysis started. So the idea would be to get the PD catheter one month and start PD training before the first day of the 3rd full month.
Now…to address your emotional well-being. Having been a renal social worker and worked with patients and their families for years, it’s very important that you take care of yourself not only for you but for your family. I’m sure this is no big news to you. Do you have a counselor that you have seen for your depression, adjustment reaction, and anxiety in the past? If so and if you had a good relationship with this person and he/she helped you cope before, call on Monday and ask for an appointment right away. If you don’t know a counselor, ask the doctor if he/she has suggestions of a counselor that you can see who knows about kidney disease. If not, call the mental health center in your community and ask for someone who helps people cope with chronic illness. If you go to one counselor and don’t feel like it’s helping, try someone else. The counselor’s skills and your relationship with the counselor are two big keys to successful therapy. If you’re not taking medication for your depression and anxiety, you may need something. If you are taking medication it may not be the right one.
Every dialysis clinic has a social worker who should have a masters degree and clinical social work training who is available not only to your husband but to you and your children to help you cope with his illness. Often healthcare providers focus on the person with kidney disease and family members may not get the attention that they need and deserve. With your husband having a chronic illness, it will be important for you to learn to set boundaries. You will need let (encourage/make) your husband to do what he can for himself. Since he’s chosen PD, that’s a good sign that he wants to be self-sufficient. If there’s anything that I can say from seeing what happens in families with a loved one who has kidney disease – do not wait on him. He will come to expect it and you will come to resent him for expecting it. Teach your 3 kids how to do age-appropriate chores around the house that will give them skills in later life and help you at the same time. Being everything for everybody makes you feel good for a short time, but is too exhausting in this situation.
Another thing you can do is join a support group for spouses of people with kidney disease if one is available or for spouses of those with chronic illnesses. These message boards can serve as support and if you read them you will see that people post on multiple boards or are on different listservs. One I often refer people to is Dialysis_support which has over 900 members:
http://health.groups.yahoo.com/group/dialysis_support/
I hope that other family members (and patients) will share tips with you as well.
Thanks for your reply. My husband doesn’t have vascular access, but we do have private insurance.
Counselling for either of us is not an option for financial reasons. Money is really tight right now, just enough to get by. There simply isn’t enough money to pay the copays for therapy.
I have been taking Prozac for depression for years, but it’s a low dose. I will see our family doctor tomorrow to discuss raising that and adding an anti-anxiety medication. Xanax XR has worked in the past to get me through flare ups with the panic disorder. Also, his NP recently took me off of Elavil which I’ve been on for the prevention of migrains for 14 years. I think that was the wrong decision. The headaches are back.
Right now I’m just trying to remember that I can only live one day at a time. I do have supportive family that I can talk to in that they love me. However, it’s very difficult because they don’t like my husband, who has a difficult personality at best.
My most pressing problem right now is the physical symptoms I’m having to all this stress. I have an esophageal disorder and it’s out of control, I’m having chest pains and migraines. (I know this sounds like I’m griping, but I really don’t know how to deal with all this pain.) Hopefully with medication changes I can get a handle on this stuff and again be available for my husband’s care.
At this point, my husband resents that I don’t wait on him. In fact, I pressure him to do the domestic stuff even though he hates it because I know if I don’t, he’ll sit and watch TV all day and just slip further into despair. He’s already saying that dialysis is too much of a headache just to get started and he’s considering not having treatment at all other than comfort measures.
We don’t have computer access at home, I log on from work, so he doesn’t have that kind of support either.
Maybe when and if he does actually start PD treatments, we will have access to the social worker at the dialysis center and won’t have all those high copays. We do have a pastoral worker who is the chaplain at the hospital I work at who sees Shannon and me on a regular basis and that has been a tremendous help.
I’m really glad to hear that you have a pastoral counselor to help you cope with your situation and that you had an appointment with your doctor.
Meanwhile, in addressing the cost of therapy, your local mental health center would offer counseling based on your financial status. It might even accept what your insurance pays if you explain your situation. Although your family doctor may be very skilled, it’s unlikely that he/she would know all the possible psychotropic medications available and their side effects. It would be good to talk with a psychiatrist about your symptoms and have him/her look over your medications to see if there’s a better way to manage them. If you can get your panic disorder under control, perhaps your other symptoms would be relieved. I can’t say enough for the value of talk therapy along with drug therapy. Drug therapy take care of symptoms; talk therapy can change the way you look at things so drugs aren’t needed long-term.
I am going through something very similar,My wife has had breakdowns in the passed and suffered depression, seven months ago I was rushed into hospital and have been on haemodialysis ever since,I am awaiting the op for the pd cathater and they just leave it for weeks and weeks, I found out that if you have it inserted under a local anasthetic(awake yet painless) you can avoid some of the time delay of waiting for surgery under general anasthetic, allthough I am living in england and their may be some differences in the medical system.
but I agree they dont have a clue how their date shifting affects people.
God Bless
max
I think patients need to let staff know how much the date shifting adds to the normal anxiety that someone feels when the need for dialysis is approaching. Unfortunately, what’s “old hat” for them is new and scary for people with kidney disease and they need to be reminded of this so they can get back in touch with their sense of humanity.
The week before last I spent raising all kinds of stink, and it seems that a griping woman really can get things done because my husband went in on Tuesday of last week for hemo access and treatment, had his PD cath placed Wednesday and was sent home on Friday.
While there he received 4 hemo treatments which had him much healthier and hopefully will hold him over until we can start low volume exchanges on Wednesday of this week.
That’s terrific. I don’t think that staff do things consciously to be obstructionist. I think they just don’t realize how schedule changes can adversely affect families that have to plan ahead for things like surgeries, hospitalizations, outpatient dialysis treatments, etc. I’m glad that you spoke up and that your husband got what he needed. Although patients may worry about “rocking the boat,” I’m sure he’s glad too.
I don’t worry too much about ‘rocking the boat’. I figure if the boat is not going to get us there, what’s the use in keeping it around 
My husband started and completed PD training last week, is now doing home treatments and feeling much better. It’s a big lifestyle adjustment, but we’re so grateful for the relief.
Turns out rocking the boat paid off…maybe that ‘going crazy…gotta do something’ feeling I was having was a God thing because the neph who did his surgery said he would never have made it until next month as the other doctor had ordered. He said he would have just went to sleep one night and never woke up because the toxins were so high in his blood.
I’m so glad that you rocked the boat and that your husband is feeling much better. Follow your heart. Remember, you know your husband better than anyone else and will notice changes sooner than anyone else will. Keep advocating on his behalf to get what he needs.
I know exactly how you ALL feel. My husband is 34 and has had CKD for 5 years and was just told by his nephrologist Friday, July 1st his creatinine was 3.85 and the next step was fistula and transplant team consult. Well in the summer of 2010 his levels were 3.7 why now why all the sudden are they jumping to such extremes? To top it all he went to this visit alone because I could not get off of work to go, so he had an hour and 15 minute drive home ALONE to worry. I called the nurse and asked why would they give him such a prognosis and not have called to suggest a support person to come to the visit. I could have gotten his mom, dad or brother to go with him. The doctor new on Tuesday before his appointment on Friday his levels were high, so he surely had some incling of what he would suggest. Compassion people, it’s not everyday you get told you may have to get a transplant or go on dialysis. I was so mad, she said well you should come to the next visit with him (while popping her chewing gum in my ear). I told her not to worry I’d be there even if he just had to void in a cup or have his finger pricked and I would have all my questions ready SO BE PREPARED. This is so tiresome, stressful, depressing, ubber-anxiety high and emotionally draining. good luck to you ALL…
Do you know what your husband’s GFR rate is? (If not, you or he can use this site to calculate it based on his creatinine: http://www.kidneytrust.org/learn/calculate-kidney-function/. New research (the IDEAL study and several others) is saying that dialysis is best started when the GFR falls to 6-9%. Often in the past, treatment would be started earlier.
I’m a little shocked that the news that your husband’s CKD is progressing to kidney failure seems as if it’s such a shock to you both. As CKD goes from stage 3 to 4, you are supposed to be taught what this means! I’m so sorry that it sounds as if this didn’t happen in your case, and that the staff were not compassionate about the tremendous blow they were delivering.You might visit our free Kidney School to learn more http://www.kidneyschool.org. Right now, the Coping module might be especially helpful for you.