More illnesses…this is crazy!

As I sit here in The Access Center in West Orange, waiting to see what they are going to do about the clot, I thought I would write again since I am bored out of my mind!

Mark got a call from Dr. Webber, the gastroenterologist. It seems that his ultrasound results came back. He has “many gallstones”. Dr. Webber believes the gallbladder will need to come out. He is still waiting for the results of the biopsy taken during the endoscopy. Dr. Webber will call next week with the results, and they will decide on a plan of action. Mark did tell him that he was feeling better so there is no immediate need for action.

It never ends, does it? While we were waiting, I asked Mark what he thought and felt about all of these health issues. He said it was a little frustrating, but it is what it is. I asked him if he was depressed, and he said he wasn’t. He said he will just deal and accept.

Now either he accepts things REALLY well or he is liar. I am not sure which. He never seems angry at the illnesses, and does not complain about being sick. I wonder if I didn’t ask him how he is feeling, would he tell me?

Me, I am not dealing well at all. I am exhausted. I am appalled at Mark’s apathy! I wish he had other support besides me. And I wish he realized that all of this affects me too. When I talk to him, it is not complaining, whining, or nagging. It is me trying to share with him. It is me trying to offer thought and suggestions. But he is not hearing me because all he can see is that he is the sick one.

It’s a vicious, ugly circle that is neverending. Frankly, it is getting tiresome. Can I just grab my dogN get in my SUV, and run for my life??!!??!!

Endoscopy…Ultrasound… Blood Clot in the Graft.. Always something huh?

Well gee, it’s always something.

Last Friday morning I took Mark for his endoscopy for all his stomach problems. We had a 7:20 appointment. Getting up in the dark was no picnic, but we endured!! Things were going well until the power kept going out. The nurse came out and told us that even though they had emergency generators, they were going to hold off starting new procedures until the weather settled. I thought I was not thrilled but it is what it is!!

About 20 minutes after that, the gastro doc called me to talk to me. They couldn’t do Mark’s endo because the anesthesiologist was not comfortable doing the sedation in the surgi-center on a dialysis patient. He said he felt bad because he said he should have checked to see if that particular anesthesiologist would do it.

He wanted to reschedule the procedure for about 1PM at the hospital. I couldn’t do it because I had to get to work to meet some deadlines, and I was already running late. So he scheduled it for Saturday morning at another hospital. I was not happy, but such is life.

He called me about a 2 hours later (I was at work by now), and he said that they could do the procedure on Saturday morning at 9:30. He also told me that all the surgeries for that day were either postponed or rescheduled because an electrical transformer blew and no one in the area had power. So I guess it worked out okay in that sense.

We went for the appointment on Saturday morning at 7AM (because they called to say they could move us up due to a cancellation). Mark had the endoscopy done, and it was determined that his stomach is red and inflamed. He did a biopsy to see if there was evidence of infection. And he will have the results mid-week. (By the week, it is past mid-week and we have heard nothing!!)

it turned out to be a pretty good day for us. We were able to spend quality time together. We went grocery shopping, came home and napped, and then later in the day, we went to the Verizon store. Our cell phones were due for an upgrade, so we got new phones. Mark wanted state-of-the-art phones. I was happy with our LG Chocolate, but he wanted internet and all the bells. So an hour later we left the building with new Blackberry Tours. If it makes him happy, so be it!! I am still on the “new phone learning curve”….

So the week was going along pretty good. Mark’s stomach issues were minor, and he felt that he was improving. I was glad, but I am always afraid to get too hopeful because his good days just do not seem to last!!

And I was right!!! Yesterday he called me from the DaVita Center, and he told me that they could not do his dialysis because he has a blood clot in the graft that the vascular surgeon put into his upper arm. Supposedly this is relatively common, but he needed to have it removed so he could have his next treatment.

DaVita had to find him an Access Center to do the procedure. Could there be one near our home? Heck no!! We have to go to a center in West Orange, NJ (about 45-50 minutes from my house) in the middle of the day (2PM). I never get the whole story from Mark because he does not ask the right questions, but from what I understand, they will try to dissolve the clot first with medication. He will be injected and wait to see if the clot dissolves on its own.

If the clot does not dissolve on its own, they will insert a balloon into the graft (I guess similar to an angioplasty???) and push/suck out the clot. I am not sure since I am getting the information from Mark. They will use Sedation during the procedure, but depending on what needs to be done, it may require General Anesthesia. Supposedly the procedure should take 1.5 – 2 hours (if there are no complication).

This is Mark we are talking about… so who knows what will happen. With him, nothing ever seems to go as planned.

It seems like it is always something. Just when one thing resolves, something new comes along. I don’t know if this is just life or just MY life.

I wish that Mark had more of a support system, instead of just me! His family does not know anything that is going on. I sort of understand his reasoning since they are both older and not in the best of health. They also live too far away to be of any help to us. He really has no friends except for his childhood friend Jeff. But Jeff lives about 2 hours from our house, works a full time job, has a wife and three kids, and owns his own business. He is not exactly a reliable or available person! So I seem to be the one who must pick up the slack and support Mark in everything.

I feel like every time I try to do something for me, my plans gets changed, and something happens that I must adjust my schedule. I want to work on ME. I make plans to do something for me, and I have to re-arrange for him. I am trying to get my ducks in a row. I have plans, which I am not ready to share with him, but I need to do it for me.

So tomorrow, I have decided, I am going to call the Social Worker at the DaVita Center in Perth Amboy where he has his dialysis treatments. I am hoping that she can offer me some support. I am not sure what I want or need, but maybe a support group for me? Or some services that are available for Mark? He says he does not need her nor does he want to talk to her. But I think there has to be something that she can do!!!

To RY: A Heartfelt Thanks To You!!

How good it is to have a friend who understands and who cares enough to write to you when you feel like the world has walked away!!

To quote my friend, “You have run the gamut and have done EVERYTHING within you power to help Mark”. How right she is. I have talked to him, begged him, pleaded with him, cried, and tried ignoring the attitude that he has. I can’t make him do things, and I am driving myself crazy in trying so hard.

My friend says, “There is NOTHING left to do.” Yep, she is right. He has to want to help himself. He has to want to take the ball and run with it. If he wants to suffer, I cannot let him drag me down with him. My friend reminded me that stress kills. Yep, that is a fact. And as she so wisely said, “The constant stress you have been living will affect your immune system and then who will be there for Mark? No one!” And again, she is so right. I am under constant stress and worry from all of this. I didn’t cause this, and I should NOT be made to suffer for it.

I took my friends advice. She told me to go out by myself and enjoy my weekend. She suggested the following:

“Take the dog for a walk or go to a park” = I took Belle for a walk, and we went down to the bay. Lots of people were there fishing. It was nice to see people out and about.

“Read a book” = My Kindle and I put a HUGE dent in the book I am reading called “Unnatural Exposure” by Patricia Cornwell.

In addition to her suggestions, I went to Rita’s for Buy One, Get One Gelatis!! I went to the movies and I saw Julie and Julia (which for the record was VERY good and I enjoyed it very much). And I took a drive by the waterfront and watched the boats.

My friend says, “I know you are scared but for now you have to leave the world of chronic illness and go out with friends and be with normal healthy people.”

Yes, I must get out of the house and be around normal and healthy people!! I have found that to be a bit difficult. Do I know any normal and healthy people?? Actually the hardest is part is getting together with friends. Many of my friends have moved away. They are now in Florida… California, New York, Georgia and South Carolina. It’s not like I can just drive over to see them! The other friends I have are wonderful, but always SOOOO busy with family, kids, obligations, and life in general. It’s hard to get together with them. So maybe I need to find some new friends?? Some people to go out for coffee/drinks with? Or catch a movie with?? Or do dinner or shopping?? But where does a woman in her mid 40s (gulp!) go to meet girl friends. That is the big question!!

But I think my friends message was quite thought provoking for me. If Mark wants to be a victim of his circumstances, I do not have to be the hostage! I can still care for my family and have a social life. I do not think it is healthy to be sitting home with him all the time while he whines about his newest ache, pain, or symptom. Damn, we al have health issues. But do I whine constantly about a cough or being tired or insomnia or a pain I awake with. Geez, every day there is some ache or pain for me!! But most days no one even knows about it!! After all, that is the point??

So with this said…..

RY, I want to thank you for ALWAYS taking the time to offer kindness and friendship and some words of wisdom!! You are truly a beautiful person with a heart a gold. I am so glad that I got to know you!! Your husband is a lucky man!!! Thank you!! Thank you!! Thank you!!

Love and blessings to you!!!

Labor Day Weekend 2009

Well, the four day weekend known as Labor Day 2009 is winding down. On a scale of 1-10 (with 10 being awesome) , it was about a 4.5.

Most of the weekend Mark was sick. If he wasn’t physically sick, he was whining about when his next illness would occur.

On Friday we went to his school to take his personal belongings out of his office. Three hours we were there. I was in charge of cleaning out his computer and burning discs. I also had to recheck the stuff he cleaned out to make sure no personal items were left behind. Oh what fun!

Then we went grocery shopping, and after the groceries were put away, I took him to his dialysis appointment. I initially was taking him to his appointments so that he could have some moral support. Then I was taking him so that we could have some one-on-one time together. I am not sure why I continued to do it all summer because he never talked on the ride there or back. I would ask questions and get one word answers. Oh well, today was the last time since I no longer have Fridays off.

On Saturday morning he tried calling his gastroenterologist. Can you imagine trying to reach a doctor on the weekend?? Oh brother. He got the gastro on call, and he tried to get him to prescribe him some different medications. Naturally the doctor would not do that because he does not know Mark, has no chart or records available to him, and could get sued doing some thing like that. Mark was irritated that the doctor “wouldn’t help him” and that just made for a “fun day”.

We ran more errands. We got oil changes for our cars, and went to Walmart to return a bunch of stuff. Then he got sick again. Indigestion. Bloating. And whining. Don’t forget the whining. I can’t do anything for his symptoms.

Nausea and vomiting during the night. Always fun for him… and for me. Sunday he had bad stomach pains. Does he want to go to the ER? Nope, he will wait it out. Fine. Let him do that. I brought him some water and ginger ale, and I went out!!

I went to the store to pick up some stuff, took the dog for a walk, went to the movies (to see Julie and Julia) and did some reading!! I immersed myself in my own interests and kept my distance from Mark. I made sure he had water and ginger ale (which I laced with some Gatorade so he would not get dehydrated).

In the evening I had a four hour conversation with my good friend Mike. We talked about everything (as we always do …) and we vented about the good, the bad, and the ugly. Mark came downstairs while I was on the phone. Normally I would wrap up the call, but this time I didn’t. I continued talking to Mike for another hour or so. It’s not all about Mark. I am a person too!!!

I do need to find some new interests, and/or new friends to do stuff with. I realized I have spent the whole summer at home doing “family chores” because he never feels well. I think if he is sick, and does not feel well, there is no reason for me to suffer too!!

I think my life needs a MAJOR overhaul!!

Here we go again… sigh….:-(

Guess who is sick again? I get home from work, and I ask Mark how he is. He mumbles something that sounds like okay. I ask him what is wrong. He says he has stomach pain again. I asked him if he called the doctor’s office. He said that he did not.

When I asked why, he said that he didn’t want to call for a stomach ache. I reminded him that the doctor said to call if he had problems again, if not, he should call on Tuesday. He said that the doctor would not be there today. I am not sure how he knew this because it is not his regular doctor (his gastroenterologist is in my doctor’s office). I told him that he needed to call because it was the long holiday weekend, and he did not want to be sick the whole long holiday weekend.

He said he would call the doctor on Tuesday. That made me so angry! I just do not understand why he is not proactive in his own health care. Does he really want to suffer for a whole weekend when a simple call the doctor could yield a new medication that could ease his discomfort? Or maybe he wants to go to the Emergency Room (again!!!!!)? He didn’t learn on Monday when he spent nearly 13 hours in an ER only to find no answers and he should follow up with his own doctor!!!???

He said that he would give the medications more time to work, and he that he probably ate too much food today. Not sure that I would consider an english muffin with turkey breast for lunch and a tuna sandwich for dinner to be too much food!! Of course you realize that this is not a balanced diet either. He is supposed to be eating healthier and better for his own health. I do not consider that to be a balanced diet. I see no vegetables or fruit servings. I also see no calcium or milk products.

Do I want to get on his ass for that? Hell no!!! I am tired of trying to motivate him to lose weight, eat better, avoid the “bad foods” (on the dialysis list) and to stop eating fast food!!! So I left that alone.

Just for the record, I had hopes that, since he was feeling pretty good for the past three days, he was on the mend. I should have known better. After all, it is the weekend. And he always gets sick on the weekends!! He has been very sick for the past three weekends. And when he is not sick, he is too tired or not feeling well. We have done ABSOLUTELY nothing this summer except for run errands. I feel like I wasted my entire summer!! I realize that he might not feel well enough to go to a fast paced place like Great Adventure. But I have suggested things like movies (even matinees so he does not have to stay up late) or the DRIVE THRU Safari at Great Adventure. He never wants to go. The answer is always “we’ll see”. Over the last 10 years, I have learned that “we’ll see” is equal to NO!!

Tonight I was feeling optimistic when I got home! I had talked to him earlier and he was feeling good! He called it an 8/9 on a scale of 10 (with 10 being great). He had not stomach problems, no dialysis after effects, and he had slept good. I really thought that we would be able to enjoy this final weekend of the summer. We had talked about actually going out an doing something fun.

Well, what a difference a few hours makes! Based on the history, I have a feeling this is going to be another shitty weekend, and I should probably start looking forward to work on Tuesday. Naturally we argued. That is all we ever seem to do these days! And he told me that I was “the most selfish person he has ever met”.

Am I selfish?? I may not be living the illness, but I am living with the person who has the illness. He keeps forgetting (or does not realize) that this chronic illness affects me… the “healthy” loved one.

It’s easy for him to think only about himself and what he is going through and all the things he must deal with. I most certainly understand that since his the one suffering. But he also must need to know that I have to deal with the emotional baggage of my own fear, the helplessness that this kidney disease will NEVER get better (and even with a transplant there is always rejection and other issues…), the anger, the feeling of being totally overwhelmed (with diet, scheduling and planning, medications, doctor names and appointments), frustration (with EVERYTHING), the chronic (and very toxic) worry, and the guilt (of often wanting to walk away and never look back more times than I care to talk about).

It’s funny.. (it an ironic sort of way….): Doctors and nurses care for all of Mark’s illnesses. Medicare will help Mark pay for the portions of dialysis and treatment that normal health insurance does not pay. Friends and family all call (and email) to see how Mark is doing. But does anyone call and ask how I am feeling? I don’t mean a simple “how ya doing?”, but REALLY asking how things are for me.

Nope, they don’t. It’s not human nature. This isn’t a pity party. It is just the way that life has become for me (and Mark). As the saying goes, “It is what it is”.

Quickie Update!

Mark went to his dialysis treatment! He texted me to let me know that DaVita took him today!!! He did take a shortened dialysis session (of 3 hours instead of 4 hours) because he was able to get an appointment with the gastroenterologist. I wish he had planned things better and done the full dialysis session.

He had to sign a form saying that he was leaving AMA (Against Medical Advice). I guess I should be happy that he went to dialysis since last night he talked about skipping it and going on Wednesday.

Now we will see what the gastro doc says about his stomach issues….

12 hours and we learned nothing new!

After 12 hours in the ER, we learned nothing about why Mark was feeling so bad!

He went to Bayshore Community Hospital in Holmdel. They ran blood work, took a urinalysis, and did some xrays. These tests showed nothing. They gave him some medication for nausea and vomiting. They gave him a Protonix (for acid indigestion). They fed him some liquid and a sandwich, and he had stomach pain again.

They gave him a CAT Scan with contrast. He said he had to drink some yucky stuff. He waited nearly three hours for his scan. Then another 2.5 hours to get the results.

No blockage. That is the good news. The bad news is that they do not know what is wrong with him. The ER doc (Dr. Marchetti — who was quite nice and very easy on the eyes!) gave him some prescriptions, and told him to follow up with his gastroenterologist and eat a bland diet.

I hate to say this (but I will anyway!), but I have been telling him for quite a while to see a gastroenterologist. And I told him that the gastroparesis flare up can be helped with a bland diet. But he decided that Wendy’s, McDonalds and barbecued chicken were better choices. What do I know anyway? After all, I am not a doctor (as he tells me all of the time).

Today he is supposed to call the Nephrologist to have him squeeze him into a dialysis slot at DaVita. I am not sure he will do that because I got the distinct impression that he wanted to skip it and not go until tomorrow. I told him that he needs to go today since he has not had dialysis since Friday. He just yessed me to death.

He also needs to make an appointment to see Dr. Seth Webber – the gastroenterologist. I printed out his referral and his list of medications. That is all I can do.

Not sure what he is going to do. He may just sit on the couch and watch TV. That is one of the things that he does really well. I hope he makes good choices…. and goes for dialysis and calls the gastro doc.

Only time will tell…..