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Here’s today’s update…

July 30, 2010 Leave a comment

I am thinking this will be short and sweet… well, not sweet… and possibly not short. Hoping for short ’cause I am so tired I can barely keep my eyes open. I guess 3.5 hours of sleep will do that to a person!

I didn’t hear from Mark this morning at the usual 7AM, so I called the Nurse’s station since I figured he was sleeping. The nurse said he was sleeping, slept well, his temperature was close to normal. I was happy with that news.

Mark called at 8AM, and I was trying to get ready for work. He said he was feeling pretty good. He said his neck hurt where he had the new catheter, but his arm was okay.

Spoke to Mark at lunch. He said he went for an echocardiogram. He didn’t ask why. His temperature was normal. Dr. Doshi (Infectious Disease) came by and was happy that the graft removed. She has Mark on IV antibiotics. I forgot the name of it. My brain is just too tired!!!

Mark texted me in the later afternoon, and said no news… all was fine. Good to hear.

I went to go see him about 6ish pm. I saw his nurse Bernard in the hall, and he told me that Mark’s temps have been normal all day.

NOTE: Bernard is a wonderful nurse. Very friendly. Very attentive. Very easy to talk to about Mark’s health. He is such a pleasure to deal with!!! I must remember to write a letter to the hospital about him and his good work!

Anyway, saw Mark and he looked pretty good — all things considered. He was ready to eat dinner. He had meatloaf, mashed potatoes, a few veggies, some salad, and grape juice and iced tea. He got his phosphorus binder and his regular insulin. He said he was feeling pretty good. We watched news, Jeopardy, and Wheel of Fortune while snuggling in bed.

Dr. Hozayen stopped by. He apologized that Mark could not go home yesterday, but I certainly understand this reasons, and do not hold it against him. He said that he suggested the echocardiogram to see if the infection has affected Mark’s heart. He did not know about the test that the cardiologist suggesting that require twilight sedation and inserting a scope into the groin and examining the heart. (Mark didn’t know the name of the test). Dr. H. said that he would find out the details. He was not sure if the second test was a precaution or if they saw something in the echocardiogram.

The scope is scheduled for Monday sometime — around dialysis. You know what that means, right? Mark will be in the hospital until sometime next week. They still need to take out the temp catheter and put in a permanent one before he can even consider getting to go home. They are taking more blood tomorrow at dialysis to run the cultures again. That is at least another 48 hours from when they take it to get the results. And they want to make sure that the sepsis is not still lurking.

I am thinking MAYBE he will get home next Wednesday? That is of course, barring any more setbacks and complications. Sigh…

Anyway……….

As I was getting ready to leave about 8:45… Mark had his temperature taken and blood pressure. BP was good, but temperature was elevated AGAIN!! It was 100.4!! AAAHHHHHHHHHHHH!! What the f**** is up with that? The graft is out. He is on antibiotics… and he still have a temperature? Bernard called Dr. Doshi, and she said to just watch it. She didn’t want to give more antibiotics but to call her if it went over 101.

And if that is not enough, I learned from Mark that he has been having night fevers several of the past few nights. He never mentioned it to me. He didn’t want me to worry. I HATE when he lies to me. This is not the first time. And one night a nurse gave him ice packs. And this was not important enough for me to know??

I told him that all of this is causing me anxiety and insomnia — which naturally manifests its ugly self with other “symptoms”. I told him that lying to me just makes me more angry. He knows this from previous issues. I am going to have this stress until he is home, and this is behind us. Trying to handle all of my life’s responsibilities AND having a sick husband will cause stress. Does he think this is a picnic in the park for me?? Lying and hiding stuff is not going to help me or him. The truth is the best policy.

I already have a history of anxiety. It rears its ugly head during stressful times…. and it can get pretty bad. Xanax and Klonopin help. But for obvious reasons, they cannot be taken regularly. The last thing in the world I would need is a benzo addiction!!! But all of these health issues added to my already hectic life is truly affecting my life. Maybe a regular schedule would help, but my mornings start early, my days are filled with work and life, and my evenings run into the night…which quickly turns to the “wee hours of the morning”.

I am gonna sleep in tomorrow (that is my hope anyway) and try to get some much needed rest. A xanax should help that. As long as the phone does not ring….or as long as the neighbor does not blast his music. Can I put a “Do Not Disturb” sign on both ends of my road??

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Mark’s stable, Belle’s eating my sock, and I am babbly!!

July 28, 2010 Leave a comment

I am glad that Mark is ok… at least he was when I left the hospital. He was awake when I went it to see him about 7:15PM. The surgeon told me that Mark would be in recovery for about an hour. I was going to wait the hour and go to the reception desk for an update. But I just happened to see him on the gurney going down the hall. I knew he was on his way upstairs to his room. I waited a few minutes so that they could get him settled in. Funny that no one bothered to tell me that he was on his way upstairs. Had I not been looking out into the hall, I am not sure I would have known.

When I got upstairs, Mark was awake and alert. They were taking his vitals and all, and he was resting. He was very thirsty, and I gave him some iced tea and water. The nurse said he could eat and drink slowly so he would not vomit. He also had some soup, pudding, and fruit cup. And more drink. When I left at 8:30, he was resting comfortably and very sleepy. I figure he will not up to be calling me before bed, so I will call the nurse’s station a little bit before the shift change at 11PM.

I did find out that his fever spiked to 104 before he went into surgery!!! It was 101.5 when he called me, but it rose drastically VERY quickly.

Poor Belle… my sweet dog has been alone so much… and like her mama, she is anxious and stressed. Hence.. THE SOCK!! Why am I telling you this? Cause I can!! And because she is such a comfort to me during all of this. This is not to say my friends haven’t been, but she is the one who cuddles up close and just knows. What does she know? She knows all of my secrets!!

I didn’t think that tonight was a good time for me to talk to Mark about our life change, but all of this has got me thinking. I am not thrilled with all of my thoughts as some are truly selfish, but I am human, and so be it!! But things have got to change around here. Life is short, and as I realize, it changes on a dime.

This morning I was emailing a friend of mine (who I have known since we were seven years old)… and we reminisced about the good old days when our biggest worry was whose house we were going to drink at on any given day!!! Pretty pathetic, I know. But ya know what? I do believe that life should not be this hard. And I guess it is only as hard as we make it. Yep, we get dealt some bad cards…. but ya know what? We have to play them. I suppose I could bluff my way through it. I could make people think my life is all peaches and roses, but let’s face it, it AIN’T!!

It used to be better… but it got complicated… due to circumstances beyond my control. I remember a few years ago, I helped out a “perfect stranger”. She needed help with her website updates, and I offered to help. I did it because I felt so blessed with my life. I wanted to help someone in need.

Now nearly 4 years later, she has become a DEAR FRIEND!! And she is always around when I need her (and I hope vice versa). I wish we lived closer, but the phone, texting, and internet have been the basis of our communication. One day I WILL meet her face to face. I would settle for nothing less!!!

So anyway, no bluffing. I never did it before. Why start now? I have been blessed for the most part. Yet like everyone else, I have had my ups and downs. I remember going through my divorce from Bob. I was a complete and total wreck. And that was every DAMN day. It seemed like Bob would do some hurtful thing every day that would leave me crying to one of my dear friends. Why he tolerated me I have yet to figure it out. I am forever grateful for him. He doesn’t realize (or maybe he does?) that he saved my life! Ok, that was a bit dramatic, as I probably would have gotten through it without him. But I am glad that I didn’t have to. Makes me realize how much I miss him…. and how long its been since I have seen him!!

Note to self: Contact good friend ’cause I miss him!!!

Notice how I did not mention any names? I figure that I know who these people are. If and when they read this, they will know who they are. And also, the names have been withheld to protect the guilty!! Tee hee!!

I really believe that things need to change. I can’t make someone change, so I guess I have to change me. I can’t settle anymore. I have done that for a while now, and I wound up with people in my life that are NOT supposed to be there, issues that are not my fault and/or not my problem, and more isolation than I want in my life! I know that pets, kids, family, work, and responsibilities can have a drastic change on a person. It takes away spontaneity in one’s life. Suddenly life gets in the way of fun. But geez, don’t we get a choice? Yes, actually we do. And I need to make some!

For years I have wanted to move south. I used to think that FL was where I wanted to be. But after going to SC, I realize that is where I am meant to be. I love the climate. I love that it is near the water. And I love the laid back way of life. So very different from NJ where everything moves at a fast and furious pace.

I would be happy in a small home, living a simple life. Now don’t get me wrong, I love my home and (for the most part) my life. But I don’t need a house this big. I need very little yard (I am sooo not an outdoorsy kind of person). I need to smell salt water!! Mark and I have so much STUFF. That’s all it is… STUFF!! What the heck do we need all this stuff for? Let’s be real! Not to brag or make anyone feel bad, but does a house need 4 computers? 4 TVs? fancy cars? a 60″ TV? 4 different sets of dinnerware? Do I need all of this stuff? HELL NO!! Do I personally want it? Not really. It’s all nice. But I have never been that materialistic. Most of the stuff is what Mark wanted. I think it is because he grew up poor, and he never had nice stuff. So we buy it. And we store it. Then years later, we donate it (in some cases, unopened) to the Salvation Army. Go figure.

This is probably not going to sound too nice, but damn, it is MY blog. It is subtitled, “A wife’s struggle with her husband’s kidney disease”. I am the wife, and this is my struggle, so I say what I want. Take it or leave it!! So here goes…

I have, on many occasions, and especially during trying times like these, wondered what I would do if Mark loses his battle with ESRD. Screw it… let’s call it what it is…

I HAVE WONDERED WHAT I WOULD DO IF MARK DIED!!

Ok, so what would I do? Who would I call first? I thought about that today. I think I would call my brother Jeff. Over the years during trying times when I didn’t know what to do, I would call him. Thank goodness, he has always been there for me. He has always been the one who handled the family matters that I couldn’t deal with. The other day I asked him if he would help me deal with the house and financial matters if Mark died. He said, “Of course”. I knew that would be his answer, but I wanted to ask anyway.

There is the answer. I would call Jeff first. It would take him a bit of time to come out here since he is in Illinois. Then who would I call? Hmmmm? I honestly don’t know. I think I would regress and go into hibernation mode!! I can do that pretty well. I do have people I could call. I have friends. I have several good friends (both near and far away), co-workers and business associates, close cyber friends, and family. But would I call? That remains to be seen. Sometimes when life gets “icky”…. well, I don’t deal well.

Because I don’t deal well, I think about running from my life. Would I do it? Well, in 47 years, I have not run yet, so I guess not. But someone in my life told me that I am “a pink”. I know you don’t get it. I will have to get the exact definition tomorrow. But damn, she was 100% right. I may love the color purple, but I am a pink person.

Wow, what a rambling blog entry!!! Straight from the heart of a stressed out woman!!! Almost time to call the hospital to check on Mark. Then maybe bed and sleep? Bed, yes. Sleep, maybe.

Post surgical update

July 28, 2010 Leave a comment

Dr. Ciervo just spoke with me. Mark is out of surgery and it went well.

Dr. Ciervo removed the infected graft and tissue. Mark has an open wound which will remain open until it heals. I guess it is covered with something to prevent infection, but I am not sure about that. He has a temporary catheter in his neck which will remain in place until they put in a perma-cath. I think Dr. Ciervo said it would be about 48 hours (when hopefully the infection will clear up). He said he would prefer he stay here in the hospital until the temporary catheter is out. But he feels that he will let the infectious diseases doctor decide when he is infection free and good to go home!

Mark is in recovery and due to be there for about an hour.

I do wonder how all of this happened! I think a majority was Mark’s own denial and stubbornness. But that is neither here nor there. We must move forward. I also believe that changes need to be made in our life together and separate. I know that this infection was just an unfortunate incident but we need to be more aware and proactive in Mark’s health care.

He is going to have to stick to his renal diet. The salt has to go!

He is going to have to drop the weight so he can become active on the transplant list. We need to try to find an altruistic organ donor while we wait on the transplant list.

Exercise might be a good thing too. And all of this will hopefully get Mark healthier and in better shape for a transplant!

Together we need to be more social. I know he does not always feel well but being isolated is not always good either. I used to be MUCH more social before I met him. Then I got old, lazy, complacent, and addicted to technology. Mark was and still is addicted to TV!!

I think getting out as a family more often will be a good thing. At least that is my thought. Some new friends might not be a bad thing either. We have been in Keyport for almost 4 years now, and we haven’t really met people we really want to hang out with.

Things have to change. It’s just not a healthy way to live. Living under a cloud of stress is not good for anyone!

Gonna go get my visitor’s pass to go up to Mark’s room! Will update tonight!

Thank you to all my friends for just caring! Wish I could hug you all!!

Categories: kidney disease

We were THIS close to going home!

July 28, 2010 3 comments

Mark actually was given his discharge papers. He told me that he would be ready about 3:30. I even made plans to take off tomorrow so I could keep an eye on him.

Then he called about 2:30 he called. He spiked a fever of 101.5 and things were on hold. They were waiting for the vascular surgeon, Dr. Alfonso Ciervo, called me. There is an infection in the graft and Mark needed surgery. He was going to remove (a part??) the graft, put in a temporary catheter in Mark’s neck to dialysize him. They could not put in a perma-cath because it would just get infected.

So when the graft is removed, he will have an open wound in his arm. I believe once it heals, they will put in a new graft and a perma-cath.

Then almost 5pm, the nurse called me to let me know that they took Mark for surgery!! Dr. Ciervo said the surgery would be about 1-1/2 – 2 hours. Every one makes it sound so “matter of fact” but it is so stressful for me!

It amazes me that 3 hours ago he was coming home today! And now he is under general anesthesia having surgery!!

I am so not happy! Waiting is the hardest part. Waiting alone sucks even more! Ever wonder where all Mark’s friends are? And where are mine? I think I have realized that we have alienated a lot of friends – especially since Mark was diagnosed with ESRD. I think he was just not wanting to deal with all the questions! But we have definitely been out of touch with people. I don’t think this has been a good thing because I am finding myself dealing with all of this by myself!

Geez… I am exhausted!

Hoping for the “H” word….

July 27, 2010 Leave a comment

…. Dr. Hozayen saw Mark last night, and actually mentioned “home”…. as in sending him home.

The story is that the blood infection is gone. But Mark is still running a low grade temperature which everyone seems to believe it due to an infected dialysis graft. His arm is still swollen and semi-painful. The vascular surgeon saw him a few days ago, He said that he was hoping that long-term antibiotics would clear it up. He was hoping to save the current graft. By saving it, Mark would avoid a new perma-cath and surgery to replace the graft.

The cardiologist also said that he did not have a heart attack (which is what one of the “cardio-cronies” who saw him over the weekend thought it could be. However, the regular cardiologist does not agree, and he felt that other doctors should watch what they say. He moved Mark out of the telemetry ward, and into a regular room yesterday.

Mark said he was feeling pretty good today. He is up and semi-about. Just waiting. As we all (Me and Belle!!) here. He saw the Infectious Disease doctor. She did not like the way his arm looked, and wanted to get the Vascular Surgeon to look at it again.

I do have a gripe though. I believe that in our health care, we must be our own advocate, and we must be pro-active in our care. We have to learn to ask questions, get appropriate information, get names (a business card would be nice!!!), and most importantly, NOT be afraid to question a doctor’s orders!!

Mark does not do this. Mostly he just says, “okay”, and he leaves it at that. He never asks questions, and simply accepts everything a doctor tells him. When the cardiologist told him that he might have had a mini heart attack, he just accepted it. I would have questioned him as to why he felt this, what tests could be performed to verify this, etc.

So today when the Infectious Disease doctor wanted to have the Vascular Surgeon come in, I could understand that. But I would have and mentioned things like:

will he be in to see me today?
did we decide not to do the long-term antibiotic regimen?
Dr. Hozayen mentioned he was considering releasing me, can you give a guessimate of when this might happen?

This is just to name a few. But Mark asked nothing. He probably just said, “okay”. VERY frustrating!!! Let me talk to these doctors!! I will get answers!!!!!

Again, while I was hoping for him to have a discharge date, it does not appear that is yet. It might be sooner if Mark learns to speak up.

I guess it is another day in my life!!! Aaaaaaaaaaaaaahhhhhhhhhhhhhhh!!!

A Better Day …..

July 25, 2010 Leave a comment

Definitely a better day, but the stress levels still remain high!! And I am sure that they will until Mark gets out of Bayshore Hospital and is back home with me… and our baby Doodles!!

Mark called me this morning about 8:30. He was up for a while. He’d already gotten cleaned up, dressed, eaten breakfast, and gone for a short walk down the hall. I was still sleeping!! I went to bed about 11:30 last night… and I think I fell asleep about midnight. So it really was a pretty good night’s sleep. I don’t remember waking up… so I suppose that is a good thing.

I made plans to go to the hospital at the start of visiting hours which start at 11:30. Mark asked for a fish sandwich from McDonalds, some of our home brewed iced tea, and a few personal necessities. I know he really should not be eating fried and salty food, but being that he wanted to eat something like that seemed like a good sign, so I agreed. I didn’t want any McDonald’s. I did get the Value Meal and had the iced tea.

We both picked at the fries. I preferred the steamed veggies on his lunch plate!! For a hospital, the food is pretty good. The veggies were broccoli, carrots, green beans, and red peppers!! It could have used some soy sauce, but being that he is on a renal diet — which is low in salt, they were not bad at all!!

We had a nice time together. His temperature was down, but he was still running what they call a “low grade fever”. The infectious disease doctor was NOT happy that he spiked a fever last night, nor was she happy about the low grade fever. all. She felt with all the antibiotics, he should be fever free. But they all now seem to believe that the infection is in his graft/arm. They will continue to treat it, and see how it goes.

We snuggled in the bed and watched a movie after lunch. It was on FX… so it had commercials, and we had seen it before, but it was okay. We watched Man On Fire with Denzel Washington and Dakota Fanning. Good movie! I fell asleep during the movie. I was actually surprised because I’d slept well (and long — for me anyway) last night. Mark on the other hand stayed awake, which also was surprising. I left about 2PM to go home and do some chores. I wound up doing NOTHING!! Instead I crawled into bed and took a two hour nap!! I guess I must have been sleepy!! All of this is catching up with me.

When I woke up, it was time to get ready to leave to go back to the hospital! I fed Belle, and headed out! When I got there, Mark was sitting up and had already eaten his dinner. He had a hamburger on a roll, grapes, and some fruit cup. I was surprised that he had eaten before I got there, but he said the food looked and smelled good and he was hungry!! I brought my dinner with me.. which was Blueberry flavored Greek Yogurt, banana, and some crackers with cheese.

We went for a walk around the floor, and then we watched the NCIS marathon until 8PM. I figured it was time to get ready to go home. I needed to finish laundry and get ready for work in the morning.

I refilled Mark’s water and ice pitcher, we shared some grape juice, and I went home. Mark called about 11:15 or so, and he said he had watched some TV, and then took a nap, but wanted to call before he went to bed!! He will call tomorrow morning.

I hope he continues to feel this good and improves back to his old self. I miss him a lot. It is very lonely here…. and a bit creepy. I have never been one to enjoy being alone ALL the time!!

And darn it, BELLE MISSES HER DADDY!!

Part 1: Someone was awake early today! Part 2: Is it a relapse???

July 24, 2010 Leave a comment

And it was not me! Mark woke me this morning around 8:30. He had already gotten cleaned up, brushed his teeth, and eaten breakfast. I was mildly impressed!

My butt was still in bed – in a Xanax coma!!! At least I slept pretty good! I think I was exhausted and needed the sleep! Even poor doodles is worrying about her daddy!! She keeps looking out the window to see if he is coming home. Poor thing!! She has no idea what is going on! Actually now that I think about it, maybe she is the lucky one since ignorance is bliss!!

Mark called me from dialysis and said that they were having a tough time getting blood from his graft. They kept pulling out clots! That does not sound good to me! But he said that the vascular surgeon was in the hospital if they needed him. He then called about 11am to say that he got stuck a lot but they had him on dialysis. He was going to get a three hour session. I am still waiting for him to call or text so I can go see him.

I think I am gonna run errands while waiting so I don’t have to run them tonight. Hopefully he will call while I am out and about and I can just head over!

~~~~~~~~~~~~~~~~~~~~~~~
About 10:30 PM….

So I went to see Mark and when I got there, he was huddled under the covers. He said he was cold and chilled, and could I find him a blanket. I went to the nurse’s station and I asked for a blanket, and also to have his temperature taken.

They brought the blanket in, and took his temperature (rectally), and it was 101.4. They did not seem all THAT concerned, but they gave him some Tylenol and put a call into the doctor. When dinner came, he did eat. He had a pork chop, some peas with pearl onions, and some lemon sorbet. He also had some grape juice and water.

We decided to snuggle in the bed and watch some TV… There’s something very funny to me about two grown people in a hospital bed snuggled under the blanket!! We watched some weird survival show on some channel. It was quite interesting but very weird!! Mark really liked it… and kept telling me not to giggle through it!

He kept telling me that he was really feeling fine. He did not feel cold anymore, and he had none of the symptoms that he previously had when he first got sick. Of course, it is hard for me to believe that since the thermometer does not lie… and Mark has been known to cover up how bad he feels (more times than I care to mention!!!)

I started getting very warm and sleepy….. that’s what happens to me when I watch TV and do nothing else!! Mark doesn’t understand how I can knit or chat online or surf the internet while watching TV. It keeps me from falling asleep!! So lying in bed under a blanket, running on minimum sleep for the last few nights, was making me tired. Mark actually saved me. He said he was tired, and was going to take a nap, so why didn’t I go home and have some dinner. I agreed to go, but told him that I wanted to get the nurse to take his temperature first. He fussed a little bit, but realized he was going to have NO peace until I knew what it was.

I went to ask the nurse, and when I got back, he asked me to refill his water pitcher and grab him some apple juice out of the fridge. I took two juices, and filled the pitcher with a lot of ice and some water. He looked sleepy when I got back, but he told me that he felt fine. He was not chilled any more, he did not feel overly warm, and he was just sleepy and tired.

I told the nurse’s station that I was leaving, and he was going to go to sleep. I got the name of the nurse on duty for the night, figuring i would call her for an update if Mark did not call me.

But Mark did call me about 9:30. He said they took his temperature (orally this time – which is always a degree or so lower than rectally) and it was 100.8. He said he really felt fine just tired and worn out. He said he didn’t feel feverish or achy or headachy or nauseous…. and…

He had a theory. I thought, oh great, another one of his brilliant theories!! His theory was that when the dialysis nurse was using the syringe to remove clots and infected tissue in his graft, she “stirred” up the infection and the yucky stuff was floating in his blood again. This was causing his fever….

I did not buy it. Just in case anyone was wondering!!! His last theory was on Tuesday when he first felt sick. He said that he thought he had food poisoning. We ate the same thing. I didn’t buy that!!

But he promised me that he did not feel bad, and he was just going to go to bed to get some sleep! I guess I have to believe him. I just hope that this had taught him that he can’t take his health for granted, and also that he can’t lie to me about what he is feeling!!! And I always know best!!

So being that he called me, I will not call the hospital to check on him. He said he will call me in the morning. I think I am going to call it a night. I am tired. I really need a good night’s sleep. I have been running on empty since Tuesday night. Besides….. poor Belle is sleepy and ready to snuggle in my bed … and push me out!!!

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