A Spouse speaks for his wife who is new to dialysis

I’ve been lurking in here for a month or so, so thought it was time to post my first post. I’m a husband of a 57 year old lovely wife that recently had to go on dialysis.

This came as quite a shock for the both of us as we believed the problems the wife was having were related to an auto accident back in June of 04. At that time she was prescribed several medications to help relieve the pain she was having. Medications such as Vioxx then later Celebrex, Skelton and Neurontin were prescribed for her over a course of roughly 16 months.

The wife initially was complaining of being tired all the time, and we just took this, that her night job of talking care of an elderly lady was taking it’s toll on her. Other symptoms reviled themselves too us such as moderate to severe itching, but we didn’t know at the time that these were related to the kidney problems.

It was though the suggestion of an Independent Medical Examine that lawyers from the other side on the auto lawsuit that the road we was about to travel would manifest itself into kidney disease. His suggestion was to have lab work done to rule out rheumatoid arthritis or other collagen vascular disorder given the widespread myalgias/arthralgias that the wife had.

When this test was done (order by her chiropractor) the results showed “severe anemia, with chronic inflammation as the ESR and C-reactive protein levels were way above normal. Results were then sent to her primary care physician (who we have since fired) who then sent her to a hematologist. The hematologist suspect vasculitis and immediately placed my wife into the local hospital. Test were run…many tests…about 20 + blood labs, a bone biopsy, ultrasound of kidneys (showed normal) full x-rays of the body, CT scans, PET scan and numerous other tests.

Their suspicion change from vasculitis to MM (Multiple-Myeloma) during the testing phase, all tests came back negative for MM.

Then a kidney biopsy was ordered. The nephrologists suspected some sort of LCDD, but even that came back negative. What did come back from the Mayo clinic was:

Focal global glomerulosclerois with localized moderated interstitial fibrosis and chronic inflammation. The report also said the degree of interstitial inflammation suggests the possibility of tubulointerstitial nephritis.

Now the wife has never had any high blood pressure problems that can be seen at all or over a long period of time. She did have one episode of high cholesterol…values through the roof…but after 6 months of Tricor the values came down.

Both of these or a combination of the two (high BP/ cholesterol0 is what the nephrologists said was the cause of the wife’s failing kidneys. The chronic inflammation part he said could have been caused by the Vioxx and or Celebrex, possibility some of the other drugs that I listed.

It was at the first office visit with the nephrologists we were told the news. His words were I’ve got good and bad news. The good news is we can control the anemia though shots. The bad news is you’re kidneys are failing you and you will need to go on dialysis. I then ask how long, his reply; “About one year if her values hold.”

Two weeks later we had another office visit with him….and he really slap the both of us hard in the face. Her Bun level and Creatinine had increased 2-3 fold since the first visit. He told us she has to go on immediate dialysis or die within days. Emergency surgery was schedule for the next day to implant a catheter in her right chest area….which took longer than normally it would and cause some problems days later. Two days later she received her first dialysis treatment.

Both the wife’s body and mind fought back and she got sick beyond all description. That night she started to run a temperature of 102.5. A call was placed to her nephrologists and he finally was found about 45 minutes later. He said give her a Tylenol and if she gets sick again to take her to the ER.

His attitude at the time was don’t bother me, I’m busy getting ready for my New Year’s Eve vacation. That attitude and what transpired over the next several days cost him. The wife and I fired him has her nephrologists.

As it was, I had to transport her the next day to the ER for severe vomiting….it just wouldn’t quit. At the ER, tests were run and it was found that she had a WBC of 17K. Suspicion was placed on a possibly infection at the catheter site. Since this hospital doesn’t have a dialysis unit in house, the current policy is they can’t transport the patient back and forth from the hospital to the dialysis center located a few blocks away.

We were told that she would need to be transported to a hospital two hours drive from there, were they have, not only a floor specific for kidney patients but a dialysis unit in house.

We should have elected to be transport then, but choose to try admission to the current hospital and try Vancomycin as a first line of defense against a possible invading bacterial infection. This was recommended from the hospital two hours away. Over the next course of days, the wife’s care went to pot. The covering doctor for the nephrologists was a young Internal Medicine doctor who didn’t even bother to read the wife’s chart to know where the catheter was located, He started looking for it on her leg! I kid you not. He never order any blood work to see if the antibiotic was doing its job, I had to actually tell him it would be a good idea if he order such test, and also to see if the catheter was the site of the infection. The hospital two hours away suspected this was the cause of the problem. Of course after being on the antibiotic the test for the suspected site of infection would be screwed.

When the nurses came to draw blood from the catheter site, they didn’t know what they were doing as it is strictly taboo for them to mess with the catheter. They had to get the manual out.

That did it for me. Later that night the wife said she wanted to be transported to the other hospital. When morning arrived she told the guy covering for the kidney doctor she wanted out of there now. Orders were placed and 5 hours later the wife was on her way to a big teaching hospital.

She spent a week there getting her dialysis done and treatment for her infection. The infection site never was discovered, but was suspected it was coming from left over pneumonia from back in October were she was found to be anemic then, but no follow up test were performed and as I previous mention he too has been fired by us.

At this new hospital she was told not to get her hopes up too high, but there could be a million in one chance that if the Vioxx and Celebrex were the cause of her current kidney problems, treatment over time could help her recover some of her kidney function and possibly get her off dialysis.

Where the previous nephrologists gave the wife no hope, these new group of doctors and young interns gave the wife at least a microscopic amount of hope, Something that all patients should have…not false hope, but some hope.

The wife’s attitude towards her current condition and having to get treatments every other day has improved since seeing these group of doctors and interns, and now they have full control over her care.

Today she will be getting her 8th treatment. Her first was on the 30th of December.

As I said she’s doing better, she’s still tired, but not as much and she seems to have caught a 24 hour stomach bug that has been going around. The dialysis center suspects she caught it there as the other patients have been having the same symptoms of headaches and vomiting with some loose stools.

Our Christmas and New Year was filled full of despair and fear, but we know that the Lord is with us for we our after all His children

…and that is our story.

Hi Ghostwalker.
You guys have really been through heaps and I am very glad to hear that you are finally getting the right care. We have all been through the shock of being diagnosed with kidney problems and been told to expect dialysis at some stage. To have it all happen so quickly would certainly send you reeling. Many of us have known what was to happen eventually for a number of years, but the shock of starting dialysis is confronting whichever way you come to it.
All I can say is that things do improve, it is amazing the way one’s mind can cope with whatever obstacles occur.( and the body for that matter)
All I can suggest is take one day at a time, don’t spend to much time worrying about the future and try and find something positive in each day.
Best wishes 8)


First of all welcome to our secret hideout!..
both of you are great fighters and never gave up! Am glad things are turning for the better…

I also ask, you didn’t mention anything about going home and doing dialysis…

Do both of you want to go home and do dialysis?

It’s a fact that some people have a rough start on dialysis. It can take a few weeks for things to settle down, some aspects of the dialysis prescription to be adjusted, blood pressure stabilzed, etc. Since I’ve been on dialysis, I’ve known a number of such people, and they are all doing well now.

When you are a dialysis patient, you should definitely go to the nearest hospital when it’s an emergency and time is of the essence, but otherwise, it’s best to go to a hospital which has a dialysis department and its own nephrologists.

Good luck.


If there is any way at all that your wife can do home dialysis (HD or PD), I’d strongly encourage it. It requires time for training, having equipment and supplies in your home, attention to detail, and commitment to doing the treatments as prescribed, but the rewards are tremendous. Research has shown that people that do home dialysis have a greater sense of control, better physical health, fewer access problems, better emotional well-being. Plus you have less travel time and don’t have to worry about who is going to do your needle sticks and whether your caregiver will pay attention to your concerns, symptoms, etc. If you do dialysis at home, you only have you to worry about and no one wants to take as good care of you as your loving spouse. You might want to look at the chart on comparing treatments under the 5 types of home dialysis also on the home page.

If you can’t get home dialysis at your clinic, check out our Find a Center database from the home page of this site for clinics that offer home dialysis training in your area. Remember, after training you only have to travel that distance once a month so you can be farther from you home training clinic than you would want to be from a clinic you had to go to three times a week.

The decision is going to be up too her. As it is right now, all of this is just too new for her mentally, so we must take one step at a time. Also since technology advance as these dialysis machines are, I’d be surprised if she went this route. She has problems trying to figure out her fancy megabucks embroidery machine and always calls to me to rescuer her from the grips of the technology era. She’s not beyond learning, it just frightens her and frustrates her to no end.

If there were any medical problems that would develop at home, the new doctors have requested we go to the local hospital and if need be have them transport her to them. If the local hospital says its okay and safe to do so, then I’m to bring her there.

Hi y’all,

Ghostwalker wrote:

The decision is going to be up too her. As it is right now, all of this is just too new for her mentally, so we must take one step at a time. Also since technology advance as these dialysis machines are, I’d be surprised if she went this route. She has problems trying to figure out her fancy megabucks embroidery machine and always calls to me to rescuer her from the grips of the technology era. She’s not beyond learning, it just frightens her and frustrates her to no end.

Actually, with you as her helper, this could work just fine. In an ideal world, it would be the patient who fully understands the machine, but that’s not always the case; it is sometimes the helper (who is there for each treatment).

This site is intended for home dialysis, not in-center. So, we do need to keep the discussion focused–there are other sites to support people on in-center hemo, one of which is ours: Life Options http://www.lifeoptions.org. :smiley:

There is no question that finding out undexpectedly that your loved one’s kidneys are failing is an unwelcome shock, and it’s common to feel scared, angry, and betrayed, especially when it seems that medical errors may have occurred and perhaps this could have been prevented. We have another site that we designed to help people learn how to self-manage their kidney disease. It’s called Kidney School, and there are, at the moment, 15 different 30-minute on-line modules (FREE!) on a variety of topics, including coping. You can go to Kidney School at http://www.kidneyschool.org

In terms of “getting used to” the treatment, all too often what happens is that people become accustomed to being taken care of in a clinic, and believe that professionals must be on hand to do dialysis or “it isn’t safe.” In reality, most of the caregivers are technicians, and what you learn in training is essentially to become your own technician. If there is any chance that you and your wife might want to consider home treatment, you don’t want to get too comfortable in-center.

Nationally, more than 91% of American dialylsis patients do in-center hemo. We don’t believe that’s the best treatment, or we would not have started this site. When you’re ready to think about it, you can learn a lot right here by reading about types of treatments, patient stories, links, and the messages in these boards to get a better sense of what would fit your lives best and give you and your wife the best quality of life.

…we know when we aren’t welcome, bye!

Hi y’all,

Ghostwalker wrote:

…we know when we aren’t welcome, bye!

It’s not at all that you’re not welcome, we just want to be sure that you make your way to the resources that will help you most, and right now, it looks as if coping with a devastating and unexpected diagnosis of kidney failure is more top-of-mind for you both than home therapies.

The Medical Education Institute, which runs the Life Options program, Kidney School, and Home Dialysis Central is a non-profit organization with a mission to help people with chronic disease learn to manage and improve their health. Our focus, since we were founded in 1993, has been kidney disease. All of our resources are based on research, and I believe you’ll find them very helpful.

Each of our sites has a different focus.
– Life Options focuses on helping people live long and live well with kidney disease. There are message boards on that site as well, and these focus more on medical and coping needs related mostly to in-center hemo.
– Kidney School gives people the tools to self-manage.
– Home Dialysis Central is support for people who are doing or thinking about doing home treatments.

Please feel very welcome to use some or all of our resources–that’s what we created them for.

The decision is going to be up too her. As it is right now, all of this is just too new for her mentally, so we must take one step at a time. Also since technology advance as these dialysis machines are, I’d be surprised if she went this route. She has problems trying to figure out her fancy megabucks embroidery machine and always calls to me to rescuer her from the grips of the technology era. She’s not beyond learning, it just frightens her and frustrates her to no end.[/quote]

I understand what you mean, takes time to explore options and all that sort…for most of us I think about one year is what it takes to make new directions…

As a caregiver, how do you feel about it? You think you can handle caring for her at home? Do you have the time? Personally, the small dialysis machine I use NxStage System One is easier than using an embroidery machine… :smiley:

I think fear, anxiety will go away once you decide to go home and do dialysis…for most patients anxiety is common at in-center dialysis…

Anyway, I wish both of you luck ahead…

I am new to this chat site or any site, but I started home dialysis in December 04. The home training I received was patient and thorough. Even though I have switched machines. I have found it way preferable to incenter treatment. My husband is my partner and he came in for the last few weeks of training and started cannulation then. I work full-time and have found home treatment to be the best for flexibility, good care, comfort and lowering stress levels. The shock of learning you need dialysis is unversal and even with preparation your first treatments are shocking. One of the reasons I am such a strong advocate for home treatment is the level of training you get not just about the machine but what is actually happening or could happen while you are on dialysis. I wish the same training were offered to people in centers. I believe it give you the tools to actually manage your treatment better. People talk about self management a lot, but you need real tools. I can barely manage a cell phone but I can manage my dialysis machine just fine!

Hi Tisha,
Welcome to the group! I so agree that whether in-center or in home programs, if patients are going to self-manage, they must be afforded solid education and training. My personal experience as an in-center patient who has dialyzed in the units of a number of companies has been that if I ask a question I will get an answer. The answer may be correct or incorrect, but I have gotten nothing in the form of education unless I have asked. The onus has been on me to find the questions to ask. Education has never been freely offered apart from my own questioning. If my numerous nephrologists could of spent just one minute at each rounding teaching me something, no doubt I would have grasped my tx and what I needed to do to self-manage long before I figured it out. It would of saved me much duress.

It seems that doctors and staff assume that because many patients are in denial and don’t want to learn about their txs that all patients are the same. Or, as Dori said in another thread, they approach patient care with an acute model which blocks patients from developing self-management skills.

Every patient should be educated on their tx. to the degree they are able and we would have a much healthier patient population. There simply should be no excuse for ignoring patient education. Likewise, there should be no excuse on the part of dialysis companies for inadequately training dialysis staff and turning them loose to work on patients. This is how tx errors occur and how much incorrect information is set into motion in the dialysis units.

It is great that you were able to get thorough education/training, Tisha, that has built confidence and taught you how to protect yourself on dialysis- this is what every patient should have!