Archive for August, 2009

An Emergency Room Visit…

August 31, 2009 Leave a comment

So here is my morning (past weekend….)…

The latest condition he has is Gastroparesis (diagnosed in the late winter/early spring of 2009) where him stomach does not empty properly (probably due to the diabetes). He takes medication called Reglan (a motility drug to help the stomach push the food through into his intestines). He doesn’t take it when he feels good – or if he forgets.

Well, for the last couple of weeks he has had indigestion, gas/bloating, nausea and vomiting. He talked to his nephrologist and said he had a lot of indigestion. The neph did not know about the gastroparesis (or that the problem was not just indigestion but nausea, bloating, fullness, etc), so gave him a RX for Nexium. Last weekend Mark was sick most of the weekend and vomited several times. I asked him if he wanted to go to the ER. Nope, he will be fine.

Last Monday he goes back to his Primary Doc who feels that the problem is a flare-up with his gastroparesis. He tells Mark to continue to take the Reglan and try Gas X for the gas in his stomach. He also gave him a referral to a gastroenterologist for a consult.

Being the inquisitive person I am, I research the gastroparesis. I tell him that they recommend a bland diet (eggs, oatmeal, boiled chicken, rice, fluids, etc) and small meals 5-6 times a day (instead of big ones) to reduce the amount of food in his stomach at any given time. So what does he do? He picks up Wendy’s burgers (with french fries!!!!!) For his lunch and more for his dinner.

I tell him that the internet says he needs to avoid fat and fiber because they slow digestion. He yesses me to death. So all week he battles the symptoms. Talks about going to the doctor. Talks about eating better. Talks about getting exercise and getting on track.

This weekend he is sick. Vomiting, nausea, indigestion, says he feels like he ‘ate a turkey’ dinner, bloating and stomach pain. Spends the WHOLE weekend in bed. Again I suggest the ER. Nope, he will be fine. He will go call the gastroenterologist on Monday.

More vomiting on Sunday. Do you want to go to the ER? Nope, he will be fine.

Last night he says that the pain is gone, but he still has indigestion and bloating. But he is gonna see about an appointment with the GI guy. No problem. Should have been more proactive, but I can’t follow him about and nag him forever.

As I get ready to leave for work this morning, I ask him how he is. He says he is feeling ok… just bloated and indigestion. He is gonna get up and call the GI guy. At 10:15 this morning, I get a call from him. He is at the ER…. he vomited again and felt bad so decided to go to the ER. He filled out all the paperwork and is waiting to see a doctor.

I thought about leaving work to go be with him. But all of my vacation days that I have used so far were for his hospital stays, doctor visits, consults, etc. I hate to leave him there alone, but unless there is a reason for me to go, I am better off at work. I will end up blowing through all my paid time off… and that would be bad.

Sadly I have less stress at work then I do have at home. At home it is always worrying about him and wondering if he is okay or what he is eating or not eating. When I am at the office, I can at least have some socialization and relaxation. Sad huh?

I have to wonder if Mark ever gets tired and disgusted with all of his health issues? I would think (and this is MY thinking) he would want to follow the guidelines from his doctor just so he could feel better and not have one health crisis after another. I don’t know how I would deal with all of the health problems that he has. But then again, I would have followed doctor’s orders, and I think I would have been able to prolong my health or not be in this situation at all!! I will admit I get SO angry that Mark takes his health for granted. What happens to him, happens to me, and I have to live it too!

I see a downward spiral for Mark. I do not know if he cares. He always says he is going to change his ways, but I now know that he never will.

I did not want to travel this road. And I still don’t want to travel it. I love him very much, but he is on a self-destruction course, and it makes me sooooo sooo mad. I feel he is in denial and is ignorant about it all. I often feel very alone and helpless. I sometimes think about packing my stuff, putting the dog in the car and driving away from my life as I know it. I’d start over somewhere else…. and never marry again! But I think of better or for worse, in sickness and in health….. and then I think that the vows forgot the word “stupidity” which negates it all of the other shit!

Does this shit EVER end?? 😦

Categories: kidney disease

Which is Worse? The loneliness or the worry?

August 29, 2009 Leave a comment

Mark is sick again. I don’t know what it is…. maybe the gastroparesis. Who knows anymore. It’s hard to keep track of all his symptoms and illnesses.

It’s lonely these days. I feel like I have lost my husband. We were never social butterflies, but at least we had fun together. These days with his dialysis treatments and his sick moments, we have just lost the spark and the fun that we used to share. Neither of us seems to be having fun. He is not having fun because he doesn’t feel well. I’m not having fun because he is always sick and I spent my time being worried about him and feeling so alone.

I just feel sad these days. When I tried to talk to him about it, he said that I am just feeling sorry for myself. I am not completely sure that is true. I do partially feel sorry for myself. There are days that I have the “why me” mentality. I think it is understandable. But it is not like I feel sorry for myself all of the time. I know he is the one who is sick, but he also needs to realize that because we are married, what happens to him, happens to me.

He says I don’t support him. I try to support him, but it is not always easy. I feel sad when we make plans and then must cancel them because he is not feeling well. I feel down when I eat meals alone. I get feel bad for him when he has to go to dialysis or when he does not feel well. Yet I don’t want him to think I feel sorry for him. I just don’t know how to deal with all of this. I am not sure that the tough love works. The pity party does not work. So what does?

How is one supposed to deal with someone who has a chronic illness? How do we accept this and make things better?

It just seems like we are always bickering. He gets angry because he says I don’t support him. Then when I try to support him, he says I am nagging him.

He has spent most of the day in bed. Some of it sleeping, other just watching TV. I am not a bed person. I tend to have insomnia, so spending too much time in bed just exacerbates my insomnia. I don’t like watching TV lying down because I like to multi-task while watching television. I have always done that. A lot of times I will watch TV while I am knitting or doing cross stitch or some other craft. I also blog, surf, and play games while watching TV. So lying down in bed is not something that I enjoy doing.

Now he is angry that I do not want to watch TV with him in bed. I went up in the afternoon when he wanted to nap (for three hours). I napped for a bit, petted Belle, just thought (and stewed!)…. and finally he woke. I don’t want to spend my whole evening up there too. I just ate dinner, and going to lie down will only make me feel sick. He doesn’t understand that. He says I am not being supportive. I feel like no matter what I do, I cannot win.

I feel like I have lost my husband. He is not the person that I married, and I have seen the difference since he was diagnosed with the kidney disease. Of course it is life changing. I don’t know how I would deal with it if I were in his shoes. Maybe I would crawl into my bed and never come out Maybe I would be strong and deal with it.

We look at things differently. I like to read all the information I can, and I have found forums with others who are in the same situation that we are in. Mark, on the other hand, has no desire to read information or find a support group. He is completely content just learning by trial and error. That is so not me. I have a need for information and support.

He knows that I write this blog about our struggle with kidney disease and dialysis. I have sent him the link to read it, but he told me that he lives it, and he has no desire to read what I write. In a way I wish he would read this because he would know that I am concerned, I do care, I do love him, but I also struggle with this illness even though I am not the one who has it.

Who knew that it would be like this??? Sigh……………

Another Rainy Saturday with a bloated husband!!

August 29, 2009 Leave a comment

summerfunWell, the week is winding down. It seems I get most of my peace while at work. Isn’t that kind of sad? I find the stress at home to be just too much. Even sadder is the fact that the summer is almost over. Next week the kids go back to school, then Labor Day weekend signifies the “Unofficial End of Summer”. Sadly I did nothing much to speak of this summer.

Mark is STILL feeling the effects of (what the doctor feels is a flare-up) the Gastroparesis. I am not sure what it is anymore. He is constantly feeling bloated (as he says, “like he ate a turkey dinner”) and nauseous and full. I know he is taking his meds. He takes the Reglan as directed. He is also taking Nexium, Gas-X, antacids, etc. Who knows, maybe he is over medicating, therefore making the gastroparesis even worse. He told me this morning that he was tired of this, and he was going to make an appointment to see the Gastroenterologist. His doctor gave him a referral, and he’s going to call on Monday. I don’t know what the guy will say. Probably more tests? more medications? I think the unknown is my biggest fear because it just makes my “worst case scenario” even worse that it already is.

We were going to go to the movies this weekend to see District 9 and go to Walmart to return some stuff, but that is becoming a moot point since he is not feeling well.

I talked with my friends Dawn and Patrick this morning. She called to see how we were doing, and I told her a Reader’s Digest about what it going on. I told her about Mark’s dialysis, his constant fatigue, his new position at the school next door where he will be teaching Computer Science to the younger kids, his battle with gastroparesis, and his lack of desire to do much of anything or go anywhere.

She suggested that we make plans to go out to lunch. She said if Mark wants to come, he can, if not, the three of us (me, Dawn and Patrick) will just do lunch. We made some tentative plans for September 26, 2009. I think she is right…. I can’t just sit home with Mark every weekend. As it is, the entire summer has passed us by, and I honestly cannot say we did one thing for US. I am certainly no social butterfly, but I do like to get out and have a bit of fun.

She has been trying to hook me (and Mark, if he wants) up with her friends Rhonda and Andrew. Andrew has ESRD and he also does dialysis. But Dawn says that Andrew is having a tough time too (maybe like Mark?) and he is the one holding them back from making contact with us. I have been trying to locate a local support group for family members of Dialysis and ESRD patients, but so far I have found nothing in the area. It won’t be easy because it has to work in with my schedule.

I didn’t say anything much when Mark said he did not feel well and wanted to go back to bed. It gave me a little bit of morning quiet time with Belle! I went up after about an hour to check on him, and he was quietly sleeping, so I guess maybe he needed it.

When he came downstairs, I was just wrapping up my phone call with Dawn. He said that he has faith that he will get better and this stomach thing will pass. He said that if he did not have faith and believe that he will feel better, he would have given up. I guess it is good to have faith. I am seriously lacking in that area.

So today we are in the house. It is a rainy and gray day due to some hurricane/tropical storm. I might try to get motivated to put together the cabinet that we are going to store some stuff from the mud room. The mud room is starting to overflow with junk and stuff — a lot of it is Belle’s toys and snacks!! So if I put it together, I might feel a bit better about the clutter.

Something constructive might be a good idea, huh?

And the Doctor said…

August 24, 2009 Leave a comment

Mark spent most of the night suffering from nausea, and eventually vomiting (at 3:30 in the morning). We had no idea what it was. Both of us felt that the Reglan that he takes for his Gastroparesis was not working. But we are not doctors, so who knows?

Gastroparesis, also called delayed gastric emptying, is a medical condition consisting of a paresis (partial paralysis) of the stomach, resulting in food remaining in the stomach for a longer period of time than normal. Normally, the stomach contracts to move food down into the small intestine for digestion. The vagus nerve controls these contractions. Gastroparesis may occur when the vagus nerve is damaged and the muscles of the stomach and intestines do not work normally. Food then moves slowly or stops moving through the digestive tract.

Mark called me about noon — already back from his primary care physician. He told his doctor about his symptoms. The doctor felt that he was having a flare up of the gastroparesis. He told Mark that he felt that it would pass if he continued to take him medication as prescribed. He said if he has some nausea or vomiting, he could take the Compazine Suppositories. He feels that this flare-up will pass.

He said that if it does not pass, he will refer Mark to a Gastroenterologist for evaluation. The doctor said that there is really no other drug, other than Reglan, that will help this condition. He did admit that there is another drug but it is prescribed for chemo patients who have severe nausea, and it is not something that he prescribes.

Mark said that he felt pretty good when I talked to him at lunch. No nausea, but some minor indigestion. I hate that he is always sick and not feeling well. It makes it hard for us to enjoy our time together. He spends his time being sick, and I spend my time being worried. It’s not a good combination.

Right now he is at dialysis. I asked him if he was feeling well enough to drive himself, but he insisted that he was. I suppose that he knows better than I do. Or else he did not want me to leave work to take him to his treatment. I don’t know. I just hope he really is feeling better.

Categories: dialysis

The Quest for Resources and Answers!

August 23, 2009 Leave a comment

Being that I have Fridays off in the summer, I try to get things done that I can’t do during the work week when I would have to take time off from work. I went to the Dermatologist for an Annual Skin Analysis. It was really no big deal, and he found nothing wrong. I go back next year.

When I got home, Mark told me some bad and good news about his health insurance coverage. We got a bill for almost $30K for his dialysis care. He called our insurance company, and it is determined that there is a clause in the policy that says that he has a $35 co-pay for each dialysis treatment he receives. So at 3 treatments a week, he will be paying $105 per month. Or about $420 a month. And the even worse part is that there is a $5,000 deductible. Mark called the Insurance Coordinator of DaVita, and she was pretty helpful. She suggested that he contact Medicare/Medicaid. Supposedly, and this has to be verified, Medicare/Medicaid will help pay for the costs of his dialysis treatments for about $100 a month. The Insurance Coordinator believes that Medicare/Medicaid will act as a supplemental insurance to our Blue Cross Blue Shield Insurance. She feels that they will pay the $35 co-pay, and hopefully will pick up the $5,000 deductible. However, I did read on the Medicare/Medicaid website that, for patients under the age of 65, the coverage does not kick in until after the fourth month of treatment.

Also our insurance policy only covers 33 months of dialysis treatments. Then he must either have a kidney transplant or Medicare/Medicaid will have to pick up a larger portion of the fees. Mark’s going to have to apply for the Medicare/Medicaid, and he will call on Monday.

After he told me that, we went to Shoprite to go grocery shopping. Not even half way into the shopping, Mark said he did not feel well. First it was indigestion and nausea. Then a few minutes later he said that he felt lightheaded and dizzy. He went out to the car to wait for me to finish. When I was done, about 30 minutes later, he was dozing in the car. He said he almost puked when he got outside, but he was feeling better and was no longer dizzy or lightheaded, and the nausea had pretty much passed.

We picked up some burgers from Burger King (Ok, we know, not a good or healthy choice!), and came home to eat them. We were going to go to Lowe’s because we wanted to buy some metal shelving units for the garage, and a large storage cabinet for putting some of the junk and stuff that has been accumulating in the mud room. But Mark fell asleep, and I woke him in time to go to dialysis. I went into the center with him, which is something I have not done since his first day there. They do not let visitors stay, so if I wanted to go, I would have to sit in the waiting room outside the treatment area. I met Laurie, one of the technicians who Mark likes to have doing his treatment. He said that she is friendly, does her job well, and talks to her patients. She was very nice, and she really listened to what he was saying. I spoke briefly with the Dietician. She said that Mark is doing well, and he’d had his blood work (and a 24 hour urine collection) done on the previous Wednesday. She said that the results should be back on Monday, and it will tell her (and his doctor) how he is doing. He told her about his nausea and indigestion. He asked if the dialysis supplements could be causing it. She said she did not think so, but I am pretty sure that she did not know. She did mention that the Fish Oil supplements could cause nausea, so he immediately decided not to take them. I don’t think the Fish Oil is causing a problem because we have been taking them for quite a long time and I always buy the same brand.

He did tell Laurie about his dizziness and nausea at the Supermarket, and she felt that he either had a sudden drop in blood pressure or he was dehydrated. She opted not to take any fluid from him during his treatment. I know she is not a doctor, but what she said did make sense. She managed to get Mark to tell her that he had two bouts of diarrhea (the night before and the morning of the dialysis) which could cause a fluid loss and therefore causing the dehydration. Also she suggested he talk to Dr. DeSimone about his blood pressure medications because his weight loss (even though it is small) could warrant a change in dosage of his medications.

When I picked him up from dialysis, he said he felt good, and wanted to stop for subs at Ted’s Stop on the way home. He bought roast beef and turkey subs. They were really good, but eating them at 9PM was not the best idea we ever had. Mark had serious indigestion, and I, even with my iron stomach, has some minor discomfort!!

On Saturday our day started off pretty good. Mark said he felt well, and he wanted to go to Lowes to buy the shelving and cabinet. I agreed. We went to Lowes, stopped at Wendy’s for salads, went to A&P to pick up a few things that Shoprite did not have, and then onto Dunkin’ Donuts for Iced (Decaf) Coffee.

In trying to get the huge cabinet box out of the car, I wound up pulling a muscle in my back, and I spent the rest of the day (and night) trying not to move. Definitely not a fun way to spend a Saturday. We did watch a couple of Movies on Demand (Max Payne and Quarantine) and I read for a while before I finally went to sleep.

Today was not a good day for us. Mark is suffering from severe nausea and bloating. He said he took Alka-Seltzer (a no no for him because of the sodium content) but it made him vomit. I told him that he needs to go see his doctor (either the nephrologist or his primary care doctor). He didn’t really want to go. I could see it on his face. I told him that it could be something serious or nothing at all. I could be his diet, his dialysis supplements, his gastroparesis, a side effect of one of his meds or anything else. We just don’t know. I told him that he needs to be more proactive in his own treatment. He needs to ask questions about the side effects of his dialysis treatments. He needs to talk to his doctor about the tiredness that he gets. He needs to see if there is anything that they can do for him to improve his quality of life. I even suggested that he join a support group or talk to a counselor. The idea of support was thrown out. He didn’t even want to consider it.

We wound up fighting about the whole situation. He claimed that I had NO idea what it was life to have a chronic illness. Actually I do. We don’t need to go into my illness(es) but I know how it feels to feel like I am “defective”. I may not need treatments to keep me alive, and I may not be getting the dialysis treatments 3 times a week, but I AM a part of this. I go through the ordeal too. I have to live with this Kidney Disease too. I always thought we were a “team”, and that means we both win, and we both lose.

Yet he felt that I was nagging him to see his doctor about his stomach problems. He is very laid back and complacent about life. I am not like that. I am a “worse case scenario” kind of person. For example, Mark will get a medication for an illness. He will trust his doctor, and he will take the medication.

I, on the other hand, need to ask the doctor about side effects. I need to know what it is going to do for me. Then once I get the medication, I need to research it on the internet, and find out the “deep stuff” that the doctors do not tell you. I need to research the condition that I am taking a medication for before I can take it.

I need the facts. I need to hear what other people say. I can’t just sit and not be proactive in the situation. I think that is why Mark and I argue about this. I want to talk to people about Mark’s dialysis treatments. I want to know what is happening and why. I want to know the outcomes, I want to hear people’s opinions and thoughts. I would also like to hear positive stories about what others have dealt with in regards to this life changing condition.

If I had it in me, I would start my own support group for people/family members who are dealing with a loved one who is on dialysis. But it is not in me. I am not an organizer. I couldn’t stay focused enough to get it together and keep it going. I wish that I could, but knowing myself, I would not even attempt it. I am not good at running things and finishing projects. So maybe someone else out there would take the thought and run with it. Or even direct me to a resource that already had a support group.

This is hard for Mark…. but it is also hard for me. He seems to think it is all about him. But he forgets that I am in this boat too. It’s only been three months, and I already see cracks in our relationship due to dialysis. I
am not sure what, if anything, can fix it.

Do people REALLY live a normal life on dialysis? Do they ever feel good? Or is this something that doctors, dialysis technicians, etc all tell you to get you to keep going to your treatments?

Can anyone on dialysis say that they feel good more than they don’t? And they are living a normal (considering the 3 treatments a week) life? I would love to know. Mark and I have spent most of our summer home — in our house. We hardly go anywhere. We don’t really do things. We have not seen our friends (I think it is because Mark is ashamed of his dialysis and does not want to talk to people about it). I feel like I am housebound and trapped. It is not good for him… and it is not good for me. I would like to get out… go to the movies, the Zoo (I have wanted to go to the Turtleback Zoo since I became a fan of them on FaceBook), go to Keansburg (since it is 15 minutes from our house)… or do some other fun things. But we don’t go out because Mark is too tired or does not feel well enough to go out. So sad.

The Lemonade…

August 12, 2009 1 comment

Thought I would just give a quickie update about yesterday’s post about the lemonade.

When I got home from work, there was a pitcher of lemonade in the fridge. I didn’t make a big deal about it. Instead, I simply said, “Thank you for making lemonade”. To which Mark replied, “You’re welcome”.

Do I know why he made it? Did it occur to him that I have stood by his side since his ESRD diagnosis (even though there have been days where I wanted to pack up my stuff, grab my furry child and run from my life)? That I have taken him to appointments and dealt with the days he feels crappy and our plans must change?

I guess it does not really matter. The point was he made the lemonade. All is good!

Categories: Uncategorized

Am I selfish? Or just being unreasonable?

August 11, 2009 2 comments

So, the life of a wife whose husband is on dialysis is not always pretty!! But as a wife who is trying to deal with all this adjustment, without being a selfish bitch, is not the easiest thing.

Ice Cold Lemonade

Ice Cold Lemonade

This morning Mark and I were talking as he was getting ready for work. I asked him, “If you feel well when you get home from work, can you make some lemonade?” He immediately had a bit of an attitude saying that he made it the last two times and if I wanted it, I should make some before I left for work.

I said nothing, and we said our goodbyes, kissed, and he went on his way. As I sat there, I thought to myself, with all I do for him, he can’t make some damn lemonade? I thought about how I go grocery shopping on my days off, figuring that he might be tired on the weekend and like a break from the mundane “chores”. Then I thought about all the days I have taken off (not to mention the days I have left work early) to go with him to a doctor appointment (Vascular Surgeon, Eye doctor, Nephrologist) and how I take him to and from dialysis whenever his appointments fit into my schedule.

I thought about how I try to do things (dog groomer, banking, quick stop at the grocery store, prescription drop offs, etc) on my own time so he can relax and not have to do this stuff.

And he could not make lemonade?? What is up with that? Granted, it is not a big deal. So I am not sure why I am so irritated about the whole matter. I guess it is that I feel taken for granted through all of this. It’s like I am getting the short end of the stick. I realize that dialysis is no picnic, but he admits it is not so bad, just boring, and he feels much better now that he is getting treatment.

So why am I so worn out, tired, and drained? I think the word exhausted comes to mind!!

So… do I just suck it up and make the lemonade myself? Do I cop an attitude and just refuse to do the “extra things”? Or do I do the “Silent Treatment”?

My hope is that Mark will realize that he CAN make the lemonade, and he SHOULD make the lemonade… and he will realize that he TAKES ME FOR GRANTED (sometimes).  And when I get home, there will be fresh lemonade in the fridge!!

Time will tell. In either case, I feel better for venting…..

Thought for Today:

Someday….it will come sooner than you think!

Categories: dialysis, Vascular Surgeon