Category: Fatigue

The Rest of The Story

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Now that I’m feeling a little more human today, I’ll elaborate on the brain procedure from Wednesday.

We got there about 15 minutes earlier than we were supposed be. We were told no later than 10:00. The procedure was supposed to start 11:30.

We waited in the surgery waiting room for over 1 1/2 hours. I hate waiting…I’ve BEEN waiting for months now to get this darn thing over with. I didn’t really need this last hour or so of waiting. It wasn’t like I had to be anywhere, but it was still very frustrating to see people who arrive later than us go in first. Apparently there was a mixup behind the scenes as the pre-op nurses were very apologetic and we rushed quite quickly though the pre-op procedure.

We met the anesthesiologist and answered lots of questions, then I was wheeled down the radiology department. Down the long, flower-painted, cool, corridor. I DID remember that hallway during my first coiling in 2006, which was amazing, because I was pretty out of it due to the rupture. It must had had an impact, or I thought I was imaging it.

My vitals were taken and we were parked outside of the radiology operating room. Dr. Ecker appeared and we chatted. I also had to sign several consent forms, one of which was for the Neurofrom Micro Delievery Stent, just in case coiling wasn’t working and he needed to deploy it.

I kissed Dave and off I went. I had several IV’s in already, but they had to hook me up to several monitors once I was on the narrow table. The arm guards were raised and they began giving me oxygen. Immediately after that, they said they were going to start putting me under. I felt VERY sleepy and that’s the last thing I remember.

From what the Dr. told me later on, he did try for some time to insert the coils into the bulging wall of the aneurysm, but was unsuccessful in getting the coils to stay in the aneurysm because of the width of the aneurysm remnant. So the stent was deployed over the mouth of the entire aneurysm. That particular annie is at the top of very angled, loopy part of my artery. The Dr. kept saying it was a “diseased” artery, but it wasn’t physically ill, just very oddly shaped and according to the Dr. the stent fit in it perfectly. He seem very pleased with how well the stent worked in that odd shaped artery.

As I was being unhooked, but still on the OR table, Dr. Ecker went to speak to Dave and in trying to explain things to Dave, he eventually ended up taking Dave directly into the OR where I was still on the table showing him the images of where the stent was placed. Something DID occur on the table and the Dr. did have to inject something. We’re still not sure what term he used. It MAY have been a vasospam, not sure. I was pretty impressed, as was Dave, that the Dr. took Dave right into the OR to show him. I like that he does that.

The next thing I remember was being yelled at to wake up. I was in recovery. Dr. Ecker was right there and told me he had to employ the stent. I was quite ticked…only because that meant I had to go through all of this AGAIN and start the wait AGAIN for more work. Ugh.

I had a breathing tube inserted for the surgery and removed afterwards, but it made my throat VERY sore. I wasn’t hungry and had a pretty good head ache. There were two neuro patients in the larger recovery room. We both should have been transferred up to the 608 ward. I was NOT looking forward to that room due to previous experiences there in 2006, so I was quite pleased that they didn’t have any beds up there and that we would be spending the night in the recovery room. There were very few of us and would be much quieter.

Under the care of Erin, Hank, Darcy and Gil, a quite night soon became a rough one. Dave left at about 9 or so. He assisted me a great deal, so I don’t think the nurses minded him being there. In fact, when he left, Erin said my husband “is a real sweetheart”. I said I agreed and that I was very lucky. As soon as he left, the rest of the night and next day just went down hill.

The head pain became worse and different levels of pain meds just weren’t working. So we kept ramping up the pain meeds, then I finally got physically sick about 3 times over a 6 hour period. Morphine doesn’t like me. It’s not fun to throw up in the first place, but to do it after you’ve had brain surgery and a breathing tube stuck down your throat…it was VERY unpleasant and painful and took so, so much out of me, not to mentioned how tired and numb I felt. It was not a good night or morning.

About 4 or 5 hours after I got out of surgery, I THEN realized I had a catheter. I never even realized I had it attached/on. They did remove it, but I was unable to pee on my own. They did a bladder scan and found I was full, so another catheter was inserted. A few hours later it was removed. Still nothing on my own however.

I saw Dr. Ecker a little bit before 7 the next morning. He was concerned about my pain and about throwing up, so he ordered up a CT scan and within 20 minutes I was over in radiology again getting scanned to make sure everything was okay with the stent.

Once they got the news that it looked good, I was moved to a semi-private room on the 6th floor. They had made up all of the release forms before I left recovery so all I had to do before I could be discharged was pee on my own. Talk about pressure!! Two tries…nothing. They did 2 different bladder scans and were getting ready to put in ANOTHER catheter, when I finally went on my own. Yippee!! I’m outta here!

My head was still not feeling very well, I was weak and wobbly, but at least the nausea was done. They tried a patch used for motion sickness and that finally seemed to do the trick. I had eaten a little bit, but not much. Swallowing anything other than water was a little painful still and I was very afraid of choking on food as I knew that would hurt my head tremendously.

We left the hospital. I had my Guinness shirt on in honor of St. Patrick’s Day and we stopped at McDonalds for shamrock shakes. Unfortunately, the activity flashing by the car and riding in the car in general upset my head and stomach a little bit, so I didn’t have much of it until I got home later. I just wanted to get home to my own bed.

I called my mom when I got home, took two tylenol and went to bed. I slept until 9 then woke up and drank more water and tea. It has been difficult finding exactly what position I’m comfortable in. Laying flatter feels good some times, by sitting up does too. Confusing.

My groin area, where coils and stent were inserted, isn’t nearly as sore as it has been in the past, so that’s nice. They did use the angio seal plug this time so I think that helps a great deal. I have some special instructions and directions to follow with the plug, which is different than not having one, but I’m glad I don’t have to deal with too much pain down there. The head pain is enough.

I’m trying to get up every few hours and walk around to keep things moving. And we have some good meals waiting for us in the freeze for later.

My follow-up with Dr. Ecker is scheduled for Monday. I have a list of questions started. I’m supposed to now stay on Plavix and Aspirin, but I don’t know how long yet. I’m also going to have to find out what a good replacement for Prosac is since it has a drug interaction with Plavix. Goody.

At this point I still don’t know WHEN he’ll attempt to do the additional coils through the stent. The stent should keep the coils in the aneurysm now, but he likes to give the stent time to adhere completely to the width and shape of the artery before attempting the coiling in case they move the stent. It’s still a little touchy right now as far as it moving, or dislodging something that could cause issues. I’ll be taking it easy.

Dave, as usual, was wonderful through all of this. We both kept our senses of humor and he sat with me as much as he could, even feeding me chicken noodle soup when I couldn’t sit up in bed in recovery. Unfortunately, with all of the sitting in one spot he did in waiting rooms, he threw his back out! LOL We’re in great shape.

The sun is shining, we saw geese on the stream for the first time this morning, and I’m alive. Trying not to complain. Trying.

Walk for Thought 2009

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We’re home from the 2009 Walk For Thought for the Brain Injury Association of Maine. It was on a much smaller scale than last year, but with the same passion and drive of the volunteers and participants.

The event was at a Junior High School gym. Much smaller than the large indoor track we had the college last year, so it was boring scenery that came by much quicker! LOL It was 22 laps around the gym to roughly equal a mile. We only got to 2 1/2 miles. It was a tough walk with people in a smaller space and having to be careful of folks in wheel chairs, one blind person with a helper and a few baby strollers being pushed. It was very cold outside and they didn’t designate an outdoor route, so it was all indoors.

But, as it was last year, it was very well organized with a lot of care and attention. I donated the t-shirt I was given, back to the BIAME to help fund the costs of the events. I raised a total of $753 dollars this year. Almost half of what I raised last year, but with the current economy, I was shocked I reached my initial $500 goal.

Obviously, Dave and I had Kim on our minds and in our hearts today and I was thinking about Jennifer a great deal as well. When we signed the “Wall Of Fame” poster, we signed it “in loving memory of Kim & Jennifer.”

It was a pretty short event as well. We started the walk at 9:30 and by 10:30, lunch had been delivered and the crowd started to thin out. When we reach 2 1/2 miles, tables and chairs were being put away and things were being taken off the wall. I think we would have walked a little bit more, but we felt the pressure of stopping! LOL

There was one man there by himself. I saw him walk in and sit at a table behind us for breakfast. He had a photograph with him and kept taking it out and staring at it. Obviously, he was walking there today with someone in mind as well. There was another man who we saw last year. He’s in a wheelchair, but used a walker to make several laps last year. He was doing a lot better this year with the walker and had a lot more speed. I commented to one of the women who was with him that he was doing better, but she said he was having difficulty looking at the floor. I agreed that was an issue…I kind of realized after awhile that it was bothering me too. There was a small pattern to the glossy wood floor.

Instead of the live band this year, they had a D.J. playing some tunes. It was fun and helped pass the time once Dave and I started to wind down. I’m hoping the other walks in the area have bigger turn outs and get more money. They said there were 50 walkers registered today, so that’s down from last year.

We’re both a little sore and quite tired, but I’m glad we did it again and will no doubt participate next year as well.

Clean Up on Aisle Four

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I went Christmas shopping this past week. That’s not so unusual. But the last two years since my rupture, I’ve done the majority, if not all, my Christmas shopping online as stores just bother me too much.

I decided to take a chance and save on some shipping and time and go to two stores (Target and Barnes & Noble). I took my time and after six hours and THREE stores, I was home. I didn’t even eat lunch (bad Heidi!) I still had some issue with over-stimulation in some aisles, but once I just got into the rhythm of very deliberately looking at one item, registering it in my brain, the moving on, it went very well. I was by myself, so I didn’t feel any pressure to hurry up or move along and that was the key. I could take my sweet old time and go through one aisle as many times as I wanted to.

Going into Michael’s Craft store was a huge hurdle. The first time I went into that store after my rupture, it was awful. The aisles are very narrow and they’re packed floor to ceiling with oodles of items. I’ve been in a couple of times since and this time it wasn’t too bad. I think I went through the store four times, so getting the lay of the land, as it were, helped.

So, for those of you having problems in stores, it will get better. I rested before I went shopping and made sure I ate a good breakfast. If I try to shop after working all day, it’s usually very, very tiring and disruptive on my brain and eyes. Too much stimulation with colors, shapes and text.

I was pleased after visiting three stores and not having any lunch with how I felt when i got home. The lunch thing wasn’t good, but I was on a roll. I was VERY tired the next day, but not in pain…just dopey. I’ve always taken a day off work in December to go Christmas shopping. I actually enjoy it. Listening to carols and looking at all of the pretty decorations and buying things I know will make my family and friends smile. I still enjoy shopping online better (no parking or lousy sales people to deal with) but for Christmas this is an “outing” for me and I was glad I finally was able to get out there and do it again.

I’m reminded of my post from December, 2006 when just wrapping presents exhausted and frustrated me. I’ve come a long way baby! Merry Christmas!

Still Limits

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Well, Friday at work I had a five hour meeting with no real lunch break. I can’t do that anymore I have learned. Wow, was I beat, tired and fried afterwards. The brain fatigue was quite evident. Then after getting my grocery list together once I got home from work, my head starting hurting…right where the annie is/was.

Saturday, we decorated the Xmas tree. It took me a long time to get going, but once I did I got into it and again, probably did too much at one time. Nothing like I was last year however when I had to stop every 10 minutes to take a break and drink some water. Things were still “settling” last year but I find that bending over still bothers me..at least doing it too quickly…or doing it too quickly after a day with a five hour meeting! LOL

The tree looks beautiful and has many more ornaments on it than it did last year due to my sluggishness at that time. I’m just happy to be here for another Christmas!