It’s Monday afternoon, about 3:00. Lori’s sleeping, good time to do some writing. We’ve been on vacation for a couple of days now. It’s been a very enjoyable time so far.
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Thursday night we made it as far a Tifton GA. This is about half way to my brother’s house where we were going to stay on Friday. Friday morning we got on the road about 9:30. We arrived at Tim & Nancie’s house on Friday afternoon around 3:00. It is beautiful.
They recently moved in to their close to 5000 sq ft house. It sits on 8 acres of rolling meadows and mountains. Their 3 horses (and 1 mule) have a beautiful fenced in pasture to graze in. It has just the right amount of trees on it. Tim says the deer come across his property everyday around 3:00 pm. It was very serene and a great way to start the vacation. Lori got pretty tired walking around the property and house on Friday. She also stayed up too late that night talking. She felt she would be OK since we were just driving the next day.
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Saturday she was more wiped out and sore than she thought she would be. We sat on the porch and drank our coffee watching the horses. Around 11:00 Tim and Nancie took us to breakfast. We were on the road about 1:00 on our way to Beech Mountain NC. Before we left Tim and Nancie gave us the perfect gift for our trip. Thanks again guys!
The four hour trip to Banner Elk took over six hours! Lori took one of her diuretics earlier so we had to stop a lot for potty breaks. This was ok with me. With all the sitting in the car we didn’t want any water retention.
One of our stops was at the Nantahala River area. About seven years ago we stayed there with the boys and had a great time. It was fun to sit and reminisce. I think Lori got a bit too hot though. We were in the shade but the sun was very hot and it was 80+ degrees.
Once back on the road we hit a detour. We’re still not sure why but the road we were on was closed. They were diverting all traffic off of the highway onto some country road. Good thing Nancie gave us a map! We ended up going through Cherokee and Maggie Valley. There was some kind of motor cycle convention going on in Maggie valley. We passed hundreds and hundreds of motorcycles on the road. In Cherokee they were everywhere. Once we got to Maggie Valley we say what looked like thousands. Someday Lori and I would like to do the trip on a motorcycle. One of those big quiet ones with the super padded seats and helmets with built in intercoms.
We finally rolled up to the condo around 7:30 pm. Lori and I both were pretty tired so we unloaded everything and Lori and I went to the restaurant on site for supper. Shortly after, it was bed time. The Condo is laid out with two levels. The beds are upstairs. There is a spiral staircase to get to the upstairs. This was extremely hard for Lori to navigate. Her heart was racing by the time she got to the top.
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Sunday we went to Lori’s Uncle Ken (Bobo) and Aunt Kitten’s house in Tennessee. Our directions said it would take about two hours . . . so we gave ourselves three. On the way there we stopped “Birthplace of Davey Crockett.” Not much to see, but it was kinda cool. There was a nice park there with a real nice picnic area right next to a river. It also had a camp ground. Maybe someday we will return.
We arrived at Lori’s uncles around 12:15. Her cousin Kenneth, his wife and their youngest daughter were there to say hi. After a quick visit with them they left. We then had lunch with Lori’s aunt & uncle. Lunch was served out on their sunroom. We watched the birds eat while we ate. It is a very relaxing. They have a lovely home. It was a real nice visit.
Lori also got to talk to two of her other cousins on the phone while we were there. One of them, Michelle, was best friends with Lori while she was growing up. Lori said it was like they never skipped a beat in rekindling their friendship. They exchanged email and phone numbers. It really meant a lot to Lori to have that contact made once again.
Lori’s Aunt Kitten really fixed us up with leftovers. She gave us a whole cooler full of food to take back with us. She even gave us the cooler. Tonight we’re going to have pork chops, a slab of baby back ribs (the ribs were already cooked), corn bread, peas, and some fresh strawberries and grapes for dinner. All I had to get were the peas. I know it will be delicious.
Lori got a chance to visit with both her aunt and uncle together and individually. It was really good for her to talk to them. She has always felt very close to both of them and talks about them quite often. They really seem to understand what Lori goes through. This was good for Lori since so many of the people we know just don’t seem to get it. One of the things her aunt said was, Lori and she had a lot of the same things going on, but Lori was much too young to have to go through what she deals with every day. Lori was touched. Her uncle said something that got to me as well. He told me that reading this blog has given him a better understanding of what his mother went through on a daily basis. For those of you that did not know it Lori’s Paternal Grandmother had lupus too. It was a factor in her passing years ago.
It was a good day for all of us. We left around 4:00. Aunt Kitten could see the energy leaving Lori as the afternoon went on. She described it as wilting. It was a great description that I’m sure I will use again. I know she was as tired as Lori was. I hope she didn’t over do it entertaining us. Thanks again Uncle Ken and Aunt Kitten. You really made the visit special for both of us.
The trip back to the condo seemed very short. When we got back to the mountain we found a little park with a whole bunch of ducks and some geese. We parked and sat there for about a half hour watching the ducks chase each other. It was a great ending to a great day. After a nice dinner we called it a night.
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Today we went to Blowing Rock. It is such a quaint little town. A lot of the areas have changed here since our last visit but this one seems to have stayed the same. I pushed her around the shops on Main Street and we called it a day. We never made it to the “Rock” so we decided to come back later in the week. Lori was really tired so we headed back to the condo so she could rest.
Lori’s waking up. It’s time to cook dinner. We’ll be staying in tonight.
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It’s Thursday evening. Lori’s sleeping so while I have a chance I’ll recap as much as I can of the week so far.
Tuesday morning we changed rooms. The split level condo was just too much for Lori. We moved into a one room suite. No stairs. It is much nicer for us. The room is on the front of the building so our view is actually much nicer. We decided to not do anything on Tuesday at all. We stayed in the room and finished watching 24 season three on DVD. We did drive off the mountain to get some dinner.
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Wednesday was our big day. After an early breakfast at “Fred’s Mercantile” we headed to Grandfather Mountain. We spent about 4 ½ hours there. It was going to be a tough day for Lori based on the stairs we had to climb at the top of the mountain to get to the swinging bridge. It was beautiful and Lori said it was worth the climb.
After the swinging bridge we headed down the mountain to the animal habitats. They have 7 bear, including 1 10 month old cub. We sat and watched them for a long time. It was pretty rough pushing Lori around in her chair up and down the paths but there was no way she could walk it.
We had lunch at the snack bar and sat and watched the birds for about an hour. They had about 9 different feeders with an assortment of seed in each one. It was really cool and attracted a lot of birds (and squirrels of course). After lunch we went back for another visit with the bears and deer. Around 1:00 we were on the road. Next stop, Linville Falls.
Lori slept in the car on the way to the falls. When we got there, there was nothing we could do with the wheel chair. The sign said it was a 4/10 of a mile walk to the falls. Lori said let’s go. After some “discussion” we headed down the trail toward the falls. Going there wasn’t bad. It was mostly downhill. Coming back would be another story.
When we got to the falls I fell flat on my face. Banged up my knee pretty good. I was so worried about Lori I wasn’t watching where I was going. Fell right on to a 1.5 million year old rock face. OUCH! After I brushed off and got the bleeding to stop a bit we were able to enjoy the falls. Absolutely gorgeous. We were not able to get to the spot to view the bottom of the falls due to the long walk involved, but what we saw was worth it. We sat for about a half hour and enjoyed the view. Then we started the hike back up the trail.
The 4/10 of a mile took over 45 minutes to walk back to the car. When Lori finally made it she said her legs were numb. Her heart was beating so fast you could hardly read it. I felt really bad. I know she did the walk for me, so I could go to the falls. She really shouldn’t have done it. I know she is really paying for it today, and she will tomorrow and the next day as well.
We came back to the room and she took a nap before we went to dinner. We just went to the pizza place just up the street. She looked so tired. She perked up a bit after we ate so we went for a drive down the “other” side of the mountain. Almost at the bottom we saw three deer on the side of the road. It was quite a sight. We we’re both very glad we took the drive.
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Today, Thursday, we went back to Blowing Rock. More shopping (browsing is more like it). After lunch we headed to the actual Blowing Rock Park. They told us it was a 1200 ft walk with stairs involved. No rock for us! It was not worth it. Lori said I could go alone and she would wait . . . what fun is that! We headed out of town and jumped on the Blue Ridge Parkway.
The Parkway was really nice. We pulled over at a couple of the parks and sat. It was so much fun we decided to check out of the condo a day early and drive to Ashville via the Blue Ridge Parkway.
Tonight we will pack up and get out early tomorrow. It is going to be a really enjoyable ride. I can’t wait.
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Friday Evening Update:
Well, things didn’t go quite as planned. But we’re used to that. Last night Lori never really woke up. She got out of bed for dinner, but went right back to bed afterward. Needless to say we didn’t get packed up last night. I packed up as much as I could without waking up Lori.
About 3:00 am I woke up and saw Lori sitting on the couch. She had just taken some medicine. She said she had a migraine. It was pretty warm in the room, that didn’t help. She drank a bunch of water with her meds and went back to bed. I turned the alarm off so she wouldn’t wake up early. We decided then that whenever we got up and got packed would be good enough.
Lori woke up around 8:00. Her migraine was gone but she still had the foggy head. We went “Fred’s” for breakfast and came back to the room. Lori was too wiped out to do anything so she went back to sleep while I packed the car. Around 11:00 we had checked out and were on the road. Lori was feeling a bit better but her hips were really hurting her.
The trip from Ashville to Banner Elk took just under 2 hours last week. Today the trip back to Ashville from Banner Elk took 6 hours. The trip down the Blue Ridge Parkway was really stunning. We stopped at almost every overlook and / or picnic area. We both really enjoyed it.
We arrived in Ashville right at 5:00 this evening and got a room at the Holiday Inn Express. AIR CONDITIONING, WIRELESS INTERNET, AND AN AVAILABLE CELL FOR OUR CELL PHONE. It was like being back in civilization. We planned on going out for dinner but decided to just stay in instead. Lori took a bath and fell asleep almost right away. Tomorrow we’re going to play it by ear. I have the alarm set, but we may just sleep through it. Again we’re in no real rush to do anything. If we get going early enough we’ll finish the Parkway. I believe it ends near Cherokee. If we don’t get going early we’ll just go the direct route to Tim’s. We’re supposed to be there around 3:00, it’s 2 hours away. I think we can make it.
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Sunday Night Update:
On Saturday we didn’t make it to Tim’s house by three. It was closer to 4:00. We really took our time getting there from Ashville. The Blue Ridge Parkway was really nice. I am so glad we took the trip.
Nancie was still working when we arrived. So I grabbed my drawings from Tim and we decided to head to Nancie’s new office to say goodbye. Once there we started talking and next thing you know it was 8:00 and we were finishing dinner. We said our goodbyes and started home.
Lori was pretty uncomfortable in the car. We wanted to go as far as we could. I talked to Ricky earlier on the phone and he wanted Lori and me to be home to watch the Buccaneer’s Football game with them Sunday at 1:00. That meant we had to get to at least Tifton on Saturday night. We pulled in to Tifton around midnight. Lori stretched out and went right back to sleep (she had been sleeping in the car for quite some time). 7:30 in the morning we were on the road again. We got home today right around 1:00 pm. As great as vacation was it was really good to be home.
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The previous week was really rough on Lori. She really over did it. There are so many things we do that you take for granted that Lori is not able to do at this time. She really tried hard so “we” could do things while we were on the road. Hopefully she will be able to do some of those things someday and we can go back. We are already planning our return trip. We’re going to do it on a Honda Goldwing Motorcycle. It’s got to be a purple one though.
We talked on the last leg of our trip about how we are rejuvenated again. It has really been a rough year and a half for both of us. So many Doctors and so many obstacles we have overcome. Hopefully the next year will be better. If not, together we are stronger from everything we have been through and we will get through it together.
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Oh yeah, when we got home there was a letter from Social Security. Lori was denied her disability claim. Our first hurdle is already here. Maybe the adjuster should have read this blog.
Sunday, September 25, 2005
Thursday, September 15, 2005
Going On Vacation
We're headin to the mountains for a week. I hope Lori can handle it. It's been 15 years since we took a vacation like this (more than a couple of days). Really looking forward to it.
Lori wore her Holter Monitor on Tuesday. We turned it in Wednesday. They said "unless we find something you won't get the results till your follow up visit". We haven't heard anything - so I guess they didn't find anything (yay!).
I am going to avoid email, internet, blogs, forums, etc while we are gone, so, unless something happens I will not be posting for a week & a half.
Hope everyone is OK while we are away
Lori wore her Holter Monitor on Tuesday. We turned it in Wednesday. They said "unless we find something you won't get the results till your follow up visit". We haven't heard anything - so I guess they didn't find anything (yay!).
I am going to avoid email, internet, blogs, forums, etc while we are gone, so, unless something happens I will not be posting for a week & a half.
Hope everyone is OK while we are away
Monday, September 12, 2005
Cytogenic Study Results Are In . . .
. . . and everything is "Normal" (yay!)
So, for now we just go with an active Lupus flare, or possible side effects of the Chemotherapy (less likely per Dr. Tumlin) as the cause for the low White Blood Cell count.
Hopefully it will get better on it's own soon.
So, for now we just go with an active Lupus flare, or possible side effects of the Chemotherapy (less likely per Dr. Tumlin) as the cause for the low White Blood Cell count.
Hopefully it will get better on it's own soon.
Sunday, September 11, 2005
It's Like Living With One Of The Seven Dwarfs
Bashful? nope
Sneezy? wrong again
Dopey? not even close
Grumpy? never
Happy? Usually - but that's not tho one either
Doc? NO (We see enough of those . . . thank you)
That Leaves . . . um . . . let's see . . . thinking . . . oh yeah Sleepy! That's the one. It's like living with Sleepy.
Not just no energy but a severe case of the "naps"
She is having a hard time getting comfortable as well. In fact she says the spot where her bone biopsy was still hurts. According to the Dr. at the time it should not hurt at all any more. Most patients feel nothing the next day. If she if still in pain on Monday we will cal Dr. Peditto. She might have some kind of infection
Alright - back to watching Lori sleep.
Sneezy? wrong again
Dopey? not even close
Grumpy? never
Happy? Usually - but that's not tho one either
Doc? NO (We see enough of those . . . thank you)
That Leaves . . . um . . . let's see . . . thinking . . . oh yeah Sleepy! That's the one. It's like living with Sleepy.
Not just no energy but a severe case of the "naps"
She is having a hard time getting comfortable as well. In fact she says the spot where her bone biopsy was still hurts. According to the Dr. at the time it should not hurt at all any more. Most patients feel nothing the next day. If she if still in pain on Monday we will cal Dr. Peditto. She might have some kind of infection
Alright - back to watching Lori sleep.
Friday, September 09, 2005
Stress Test Today
Today Lori had her stress test. They did a "chemically induced" test instead of the treadmill. The Doctor just called and said everything looked ok.
We go for the holter monitor next - that is on Tuesday.
We go for the holter monitor next - that is on Tuesday.
Wednesday, September 07, 2005
More Heart Related News
We received a phone call this morning from the Cardiologists' office. After reviewing all of the test results, labs, etc. that we brought with us to the appointment yesterday the Doctor said she wanted Lori to wear a Holter Monitor. We have an appointment for next Tuesday @ 8:15 to get wired up. She will have to wear it for 24 hours.
We also decided to put off going to Atlanta to see Dr. Tumlin until we get all of the heart "stuff" out of the way. The Cardiologist will be changing Lori's medicine around a bit. We know Dr Tumlin needs to start a new medicine, since the Chemotherapy hasn't worked, so we feel it would be better if one Dr. gets it straight before the other changes things. Another couple of weeks shouldn't effect Lori's kidneys that much.
Lori was in better spirits today than she has been in a couple of weeks. It was good to see.
We also decided to put off going to Atlanta to see Dr. Tumlin until we get all of the heart "stuff" out of the way. The Cardiologist will be changing Lori's medicine around a bit. We know Dr Tumlin needs to start a new medicine, since the Chemotherapy hasn't worked, so we feel it would be better if one Dr. gets it straight before the other changes things. Another couple of weeks shouldn't effect Lori's kidneys that much.
Lori was in better spirits today than she has been in a couple of weeks. It was good to see.
Tuesday, September 06, 2005
Cardiologist Visit
Here's a quick recap on why we went to the Cardiologist today
1st - when Lori was at the Emergency Room last week the ECG they did came back as "abnormal"
2nd - while there they also found out that Lori's heart rate really jumps up when she is standing.
3rd - Everytime Lori tries to do anything she gets dizzy and light headed.
The Doctor was very nice. She seemed to understand everything we were telling her based on the follow up questions she asked. She really listened and did a pretty good job of explaining everything to us. SO here are the results
The abnormal ECG was nothing to be concerned with. The variations from the previous one ( Jan 20 04) were not that great. While there was some differences detected it was nothing to be alarmed about or concerned with in the future.
As far as the increased heart rate and / or light headed there are a couple of things that could be causing it.
1. There is a chance, based on Lori's description of when they started happening, that Lori is in a constant state of dehydration. This could be a result of the Proteinuria that has been going on for almost 2 years now.
2. There could be some other cause similar to Neurocardiogenic syncope. Which is a "transient failure of the brain to adequately regulate the body's blood pressure and heart rate. Actually the "syncope" part means "fainting". While Lori has not fainted she has all of the other symptoms and characteristics.
What is next:
A chemically induced stress test is scheduled for this Friday.
Some blood work was requested including a test for Hyperthyroidism.
A Tilt Table Test will be completed on Sept 27th. This is done at the hospital - not in the Doctors' office so it takes some time to get scheduled. HERE is a great site if you are interested on finding out more about the tilt table test.
We return on October 4th (after all of the testing is completed). In the mean time it's the same stuff different day around here.
1st - when Lori was at the Emergency Room last week the ECG they did came back as "abnormal"
2nd - while there they also found out that Lori's heart rate really jumps up when she is standing.
3rd - Everytime Lori tries to do anything she gets dizzy and light headed.
The Doctor was very nice. She seemed to understand everything we were telling her based on the follow up questions she asked. She really listened and did a pretty good job of explaining everything to us. SO here are the results
The abnormal ECG was nothing to be concerned with. The variations from the previous one ( Jan 20 04) were not that great. While there was some differences detected it was nothing to be alarmed about or concerned with in the future.
As far as the increased heart rate and / or light headed there are a couple of things that could be causing it.
1. There is a chance, based on Lori's description of when they started happening, that Lori is in a constant state of dehydration. This could be a result of the Proteinuria that has been going on for almost 2 years now.
2. There could be some other cause similar to Neurocardiogenic syncope. Which is a "transient failure of the brain to adequately regulate the body's blood pressure and heart rate. Actually the "syncope" part means "fainting". While Lori has not fainted she has all of the other symptoms and characteristics.
What is next:
A chemically induced stress test is scheduled for this Friday.
Some blood work was requested including a test for Hyperthyroidism.
A Tilt Table Test will be completed on Sept 27th. This is done at the hospital - not in the Doctors' office so it takes some time to get scheduled. HERE is a great site if you are interested on finding out more about the tilt table test.
We return on October 4th (after all of the testing is completed). In the mean time it's the same stuff different day around here.
Back From Hematologist - Still No Answers
Another good news / bad news post.
First the good news: No evidence of a lymphoproliferative disorder was found. From what we understand this means there was no Leukemia or other similar bone marrow disorders. Hooray!
There are, however some "unexplained" changes in some of the cells. We are waiting for the results of a Cytogenic study (should be later this week) to see if we can determine what / how / why etc. these changes are.
Also found was a complete absence of "Storage Iron". Not sure what this means. We did not even know it was there until we got to the car and read the test results on our own. The Doctor did not mention it.
As soon as we find out more I will let you know
First the good news: No evidence of a lymphoproliferative disorder was found. From what we understand this means there was no Leukemia or other similar bone marrow disorders. Hooray!
There are, however some "unexplained" changes in some of the cells. We are waiting for the results of a Cytogenic study (should be later this week) to see if we can determine what / how / why etc. these changes are.
Also found was a complete absence of "Storage Iron". Not sure what this means. We did not even know it was there until we got to the car and read the test results on our own. The Doctor did not mention it.
As soon as we find out more I will let you know
Monday, September 05, 2005
Very Tiring Day
Lori was really tired all day. I think the anxiety of waiting for tomorrow has really worn her out. We watched a movie and later played some cards to help her keep her mind off of things. It did keep her busy but she was never really into what we were doing.
Fortunately she fell asleep around 9:00. I put her to bed around 10:30. Hopefully she will sleep through the night. Tomorrow's a busy day.
Fortunately she fell asleep around 9:00. I put her to bed around 10:30. Hopefully she will sleep through the night. Tomorrow's a busy day.
Welcome DVDP Friends - Start Here
Today I posted the link to this site on a forum that I visit daily. I would like to welcome all of my DVDP friends . . . and those of you who are just curious and clicked a link. As the title states this site is dedicated to my wife. It started almost a year ago as a log to track when she was able to work and how she was feeling. It quickly became a communication tool for friends and family to keep up with what is going on. Now she is on disability and hasn't worked in almost 10 months. Her strength through all of this is nothing short of amazing.
It has been an extremely difficult month for her. She has kidney damage. For over a year and a half they have been treating it with no luck. About a year ago we started seeing a specialist in Atlanta (about 500 miles from where we live). She has recently developed a critically low White Blood Cell count. Tomorrow we get the results of the bone marrow biopsy to see why. Also we found out a couple of weeks ago there may be something wrong with her heart. Tomorrow we see the Cardiologist for the first time
So - if you read this you will get to know a different side of me and my family life. Kinda puts everything into perspective, doesn't it. See you on the boards.
It has been an extremely difficult month for her. She has kidney damage. For over a year and a half they have been treating it with no luck. About a year ago we started seeing a specialist in Atlanta (about 500 miles from where we live). She has recently developed a critically low White Blood Cell count. Tomorrow we get the results of the bone marrow biopsy to see why. Also we found out a couple of weeks ago there may be something wrong with her heart. Tomorrow we see the Cardiologist for the first time
So - if you read this you will get to know a different side of me and my family life. Kinda puts everything into perspective, doesn't it. See you on the boards.
Sunday, September 04, 2005
Anxiously Awaiting Tuesday
Sunday - 3:00. We have about 43 hours till the Hematologist and 47 till the Cardiologist. Lori is still have some discomfort where she had her biopsy. For the most part she is OK but every now and then I will see her really flinch from the pain, especially if she is lying down and changing positions.
While we are anxious about the results of the biopsy we are more nervous about the Cardiologist appointment. Yesterday, Lori shared with us (the boy's and I) the fact that she was scared. It took a bit to get it out of her but when she finally let go she said a lot.
I don't blame her one bit for being frightened. I think any of us would be a little dismayed if we were in the same situation. Lori sees it as her Lupus is attacking another organ, and this time a major one. Yes, the Kidneys are major organs but you can live with kidney damage. You can even live without your Kidneys if you have dialysis often enough (not a pleasant thought by any means). You heart, on the other hand, is the key to everything. If it is damaged or diseased you are in trouble. Of course we know there are great things they can do with your heart these days, but it is scary.
Everyone who is reading this knows Lori well enough to know she is not a fatalistic person. If anything she is the most upbeat, positive person most of us know. She never lets things get to her and can always find the good in most any situation. This one though, has her a bit spooked.
I think she is feeling a little better about it today than she was yesterday. Getting it off her chest has helped. She is still nervous, but letting out her feelings has definitely helped.
I hope they are able to tell us something when we go to the appointment. We have avoided trying to figure out what the possibilities could be on the internet. This is something we have become quite proficient at but in this case there would be way too much speculation on our part, and that wouldn't do us any good.
Unless something comes up I wont post any more till after our appointments on Tuesday. Check back then - I will post results just as quick as I can
While we are anxious about the results of the biopsy we are more nervous about the Cardiologist appointment. Yesterday, Lori shared with us (the boy's and I) the fact that she was scared. It took a bit to get it out of her but when she finally let go she said a lot.
I don't blame her one bit for being frightened. I think any of us would be a little dismayed if we were in the same situation. Lori sees it as her Lupus is attacking another organ, and this time a major one. Yes, the Kidneys are major organs but you can live with kidney damage. You can even live without your Kidneys if you have dialysis often enough (not a pleasant thought by any means). You heart, on the other hand, is the key to everything. If it is damaged or diseased you are in trouble. Of course we know there are great things they can do with your heart these days, but it is scary.
Everyone who is reading this knows Lori well enough to know she is not a fatalistic person. If anything she is the most upbeat, positive person most of us know. She never lets things get to her and can always find the good in most any situation. This one though, has her a bit spooked.
I think she is feeling a little better about it today than she was yesterday. Getting it off her chest has helped. She is still nervous, but letting out her feelings has definitely helped.
I hope they are able to tell us something when we go to the appointment. We have avoided trying to figure out what the possibilities could be on the internet. This is something we have become quite proficient at but in this case there would be way too much speculation on our part, and that wouldn't do us any good.
Unless something comes up I wont post any more till after our appointments on Tuesday. Check back then - I will post results just as quick as I can
Wow - That Was Weird
On Friday, Lori and I went to the Home Show in Tampa. She was feeling okay and we haven't done anything like that in a while so we grabbed a couple of bottles of water and the transport chair and off we went.
The Home Show was pretty nice. It was fun for both of us. It had the usual "stuff" you find at a home show. It's nice to dream.
We saw my uncle Jim there, working his booth. He works for a company called Bug Busters. They sell exterior bug control systems. He was very knowledgeable and confident about his product. I hope he has a good show.
Towards the end of the show Lori was starting to get tired. I picked up the pace and we hurried through the last couple of rows and headed to the car. We had to walk about three blocks (that was the closest available handicap parking) to get to the car. I pushed her as quick as I could but we were still outside for about 5 minutes. I don't know if Lori got too hot or if she was just too tired but as we were driving away she said she had a little headache. She took a couple of Tylenol and some water and we headed home.
About half way home Lori started looking in the mirror at her right eye. When I asked her if anything was wrong she told me she was having trouble seeing out of her right eye. She was a little freaked out. It took her a few minutes to figure out how to describe what was happening. She said that her vision, from 2:00 to as far as her peripheral vision went, was like looking through a kaleidoscope.
She tried closing her eyes for a few minutes. While her eyes were closed the kaleidoscoping effect was not there, but when she opened her eyes it came right back. This continued for about 15 minutes. We were both concearned now. Then . . . it started to go away. It slowly got better. It took about 5 minutes and then it was completely gone. When we got home Lori still had a slight headache but everything else seemed to be ok.
Here we are, two days later we have no idea what it was or why. I know migraines can have an effect on your vision. Usually white light lookin' things or blurry vision. Perhaps she was beginning to get a migraine and it had some effect on her eyes. Who knows.
Hopefully we will not go through that again.
The Home Show was pretty nice. It was fun for both of us. It had the usual "stuff" you find at a home show. It's nice to dream.
We saw my uncle Jim there, working his booth. He works for a company called Bug Busters. They sell exterior bug control systems. He was very knowledgeable and confident about his product. I hope he has a good show.
Towards the end of the show Lori was starting to get tired. I picked up the pace and we hurried through the last couple of rows and headed to the car. We had to walk about three blocks (that was the closest available handicap parking) to get to the car. I pushed her as quick as I could but we were still outside for about 5 minutes. I don't know if Lori got too hot or if she was just too tired but as we were driving away she said she had a little headache. She took a couple of Tylenol and some water and we headed home.
About half way home Lori started looking in the mirror at her right eye. When I asked her if anything was wrong she told me she was having trouble seeing out of her right eye. She was a little freaked out. It took her a few minutes to figure out how to describe what was happening. She said that her vision, from 2:00 to as far as her peripheral vision went, was like looking through a kaleidoscope.
She tried closing her eyes for a few minutes. While her eyes were closed the kaleidoscoping effect was not there, but when she opened her eyes it came right back. This continued for about 15 minutes. We were both concearned now. Then . . . it started to go away. It slowly got better. It took about 5 minutes and then it was completely gone. When we got home Lori still had a slight headache but everything else seemed to be ok.
Here we are, two days later we have no idea what it was or why. I know migraines can have an effect on your vision. Usually white light lookin' things or blurry vision. Perhaps she was beginning to get a migraine and it had some effect on her eyes. Who knows.
Hopefully we will not go through that again.
Thursday, September 01, 2005
Still Sore - But Much Better
Lori woke up feeling a bit better. As the day went on she showed some real improvement. We had to get some records organized for her visit to the Cardiologist next week. We had most of it in "the book" but there are some films we needed to arrange to pick up.
We had to go to the hospital to request a tape of the echocardiogram Lori had last year. She did pretty good afterward. We even went out to dinner (Chili's) with Mike this evening.
Tomorrow we can remove the dressing and she can shower. Maybe even sleep in the bed.
So . . . another procedure completed. Now all we need to do is get the results.
We had to go to the hospital to request a tape of the echocardiogram Lori had last year. She did pretty good afterward. We even went out to dinner (Chili's) with Mike this evening.
Tomorrow we can remove the dressing and she can shower. Maybe even sleep in the bed.
So . . . another procedure completed. Now all we need to do is get the results.
Wednesday, August 31, 2005
Sore . . .
Lori is pretty sore from the biopsy earlier today. The blow up bed is still downstairs so Lori just stayed there. She can move around but it is very uncomfortable. As you all know she has trouble with her hips already. This didn't help. Maybe tomorrow she'll feel better.
We received a call from the cardiologist's office today. Lori has an appointment for next Tuesday. Tuesday is going to be quite a day. Hematologist in the morning to discuss the results from today's biopsy, followed by a trip to the cardiologist. Hopefully we will get some good answers that day.
We received a call from the cardiologist's office today. Lori has an appointment for next Tuesday. Tuesday is going to be quite a day. Hematologist in the morning to discuss the results from today's biopsy, followed by a trip to the cardiologist. Hopefully we will get some good answers that day.
Tuesday, August 30, 2005
Bone Marrow Biopsy Completed
The biopsy went just fine. We arrived at the hospital around 10:30. Checked in at the registration desk and then went to our room. Two hours later we were in the car on the way home.
The staff was very nice. The only complaint we could have is one of the vampires who took Lori’s blood didn’t do the greatest job. Lori has a little lump at the spot. I’m sure it will be a huge bruise in a couple of days.
The Doctors assistant was great. She told us all about the procedure, how they do it, why they do it, and what they do with the schmootz afterward. She had us laughing and made Lori very comfortable with the procedure. After the procedure she showed us the stuff and again told us just what they do. The way she puts it they do an “inventory” of all of the cells. There are always cells being made. If one type of cell isn’t being produced properly something else is being produced in its place. By seeing exactly what type of cells are there and how many there are they can find out a whole bunch of information.
The Doctor himself was just as nice as the assistant. He too explained just what he was going to do, why, and how. I left during the procedure. They said I could stay but the room was pretty small (and I am pretty big). Lori said the Doctor talked to her the whole time. He talked about stuff in general to keep Lori’s mind off of what he was doing. After he was done he came out and got me, told me how it went, and then escorted me back to Lori.
He then reviewed with both of us what to do and look for in the next 48 hours. Keep it clean. No shower or swimming. Change the dressing tonight and then tomorrow. Watch for oozing. Take Tylenol for any pain. Take Lori out to lunch after leaving the hospital. WHAT !?! One of his “post-op orders” was to take Lori out to lunch. Pretty funny actually . . . but orders are orders.
When we got home from lunch there was a message from Dr Peditto. Yesterday I had dropped off the heart rate information for her to review this morning. The message simply said, “Dr. Peditto wants you to go see Dr. Blahblah. He is a cardiologist. We will make the appointment and get back to you”. Guess it’s off to the cardiologist.
The staff was very nice. The only complaint we could have is one of the vampires who took Lori’s blood didn’t do the greatest job. Lori has a little lump at the spot. I’m sure it will be a huge bruise in a couple of days.
The Doctors assistant was great. She told us all about the procedure, how they do it, why they do it, and what they do with the schmootz afterward. She had us laughing and made Lori very comfortable with the procedure. After the procedure she showed us the stuff and again told us just what they do. The way she puts it they do an “inventory” of all of the cells. There are always cells being made. If one type of cell isn’t being produced properly something else is being produced in its place. By seeing exactly what type of cells are there and how many there are they can find out a whole bunch of information.
The Doctor himself was just as nice as the assistant. He too explained just what he was going to do, why, and how. I left during the procedure. They said I could stay but the room was pretty small (and I am pretty big). Lori said the Doctor talked to her the whole time. He talked about stuff in general to keep Lori’s mind off of what he was doing. After he was done he came out and got me, told me how it went, and then escorted me back to Lori.
He then reviewed with both of us what to do and look for in the next 48 hours. Keep it clean. No shower or swimming. Change the dressing tonight and then tomorrow. Watch for oozing. Take Tylenol for any pain. Take Lori out to lunch after leaving the hospital. WHAT !?! One of his “post-op orders” was to take Lori out to lunch. Pretty funny actually . . . but orders are orders.
When we got home from lunch there was a message from Dr Peditto. Yesterday I had dropped off the heart rate information for her to review this morning. The message simply said, “Dr. Peditto wants you to go see Dr. Blahblah. He is a cardiologist. We will make the appointment and get back to you”. Guess it’s off to the cardiologist.
Monday, August 29, 2005
Painful Day / Heart Rate Still High
Today has been quite a painful day for Lori. She woke up this morning feeling pretty bad. She did manage to run to the drugstore to pick up a couple of prescriptions. I set up the blow up mattress downstairs in the theater for her. It usually helps to sleep on the air bed and with it downstairs she doesn't have to climb the stairs. Hopefully she will feel better in the morning.
We tested her heart rate / blood pressure quite a bit this weekend. We're tracking it so we can discuss the results with Dr. Peditto in a couple of days. It looks like we are on to something with the heart rate. Every time we test her there is at least a 40 to 50% increase in her heart rate from lying down to standing up. Just standing - not doing anything. We also tested after a couple of light tasks (ie. making a sandwich, loading the dishwasher, etc.) After most of these type of tasks her heart rate is up around 150. Anyone who is familiar with "stress tests" for your heart knows that 150 is the target range you shoot for! Folding a load of clothes should not put the same strain on your heart as a stress test!!!
As much as we don't want to add any more "conditions" or "syndromes" to Lori's long list of health issues we may have finally found something that could really be causing a lot of her fatigue.
It has been about a year since Lori has worked a full week. While she has been able to do more since she no longer works she still can't get through an entire day. Hopefully we can see a cardiologist soon and get some answers.
Lori has her Bone Marrow biopsy on Tuesday at 11:00. We're thinking Tuesday morning, before the biopsy, would be a good time to get in to see Dr. P., if we can get in. I'll let you know as soon as I can.
We tested her heart rate / blood pressure quite a bit this weekend. We're tracking it so we can discuss the results with Dr. Peditto in a couple of days. It looks like we are on to something with the heart rate. Every time we test her there is at least a 40 to 50% increase in her heart rate from lying down to standing up. Just standing - not doing anything. We also tested after a couple of light tasks (ie. making a sandwich, loading the dishwasher, etc.) After most of these type of tasks her heart rate is up around 150. Anyone who is familiar with "stress tests" for your heart knows that 150 is the target range you shoot for! Folding a load of clothes should not put the same strain on your heart as a stress test!!!
As much as we don't want to add any more "conditions" or "syndromes" to Lori's long list of health issues we may have finally found something that could really be causing a lot of her fatigue.
It has been about a year since Lori has worked a full week. While she has been able to do more since she no longer works she still can't get through an entire day. Hopefully we can see a cardiologist soon and get some answers.
Lori has her Bone Marrow biopsy on Tuesday at 11:00. We're thinking Tuesday morning, before the biopsy, would be a good time to get in to see Dr. P., if we can get in. I'll let you know as soon as I can.
Friday, August 26, 2005
Bone Marrow Biopsy Required
We just got back from Lori’s follow up Hematologist visit. As I posted in the Emergency Room post Lori’s WBC count dropped. Today it has dropped a bit more again. The Doctor wants to do a Bone Marrow Biopsy to see if there is anything else going on. The Doctors lack of confidence left us feeling a bit apprehensive about the whole thing. We did however schedule the biopsy and the follow up visit. As soon as we left I immediately called Dr Tumlin on his cell phone to discuss it with him.
Dr T. had to call me back after he was finished with his patient. He called back within a few minutes and assured me that Lori’s low WBC count was not related to her chemotherapy treatments. There was some doubt of this 2 months ago when the problem 1st came up but, according to Dr. T., the chemo would no longer be effecting her blood. It has been almost three months since Lori’s last treatment.
Dr. T. in very confidant that the low WBC count is due to Lori’s Lupus. He did say that he agreed that Lori should have the bone marrow biopsy. He “concurred with the Hematologists course of action at this time.” He did want to see Lori up in Atlanta to review the results of the biopsy and resume treatment for the Nephritis.
At this time the plan is “no more chemotherapy” (hooray!). Dr T. agreed with me that doing the sixth treatment at this time would not help much at all. What we are going to do next I have no idea. I guess we will find out in a couple of weeks.
The biopsy is done as an outpatient procedure at the hospital. Here is a link that tells you all about what they do, how they do it, and why it is done. CLICK HERE. We are supposed to have it completed on Tuesday of next week but this is not set quite yet. As soon as it is confirmed I will let everyone know.
Dr T. had to call me back after he was finished with his patient. He called back within a few minutes and assured me that Lori’s low WBC count was not related to her chemotherapy treatments. There was some doubt of this 2 months ago when the problem 1st came up but, according to Dr. T., the chemo would no longer be effecting her blood. It has been almost three months since Lori’s last treatment.
Dr. T. in very confidant that the low WBC count is due to Lori’s Lupus. He did say that he agreed that Lori should have the bone marrow biopsy. He “concurred with the Hematologists course of action at this time.” He did want to see Lori up in Atlanta to review the results of the biopsy and resume treatment for the Nephritis.
At this time the plan is “no more chemotherapy” (hooray!). Dr T. agreed with me that doing the sixth treatment at this time would not help much at all. What we are going to do next I have no idea. I guess we will find out in a couple of weeks.
The biopsy is done as an outpatient procedure at the hospital. Here is a link that tells you all about what they do, how they do it, and why it is done. CLICK HERE. We are supposed to have it completed on Tuesday of next week but this is not set quite yet. As soon as it is confirmed I will let everyone know.
Thursday, August 25, 2005
Heart Beat Still High
From what we can tell Lori's heart beat is still very high when she is standing. It was 150+ right after she took a shower yesterday. Even sitting it is usually over 100!
Tuesday we requested the records from our trip to the Emergency Room on Friday. Hopefully we will have them in a couple of days. Once we receive them we will go to Dr. Peditto and see what she has to say. Possibly a trip to the cardiologist is in our future? It is one of the last remaining "ologists" we haven't seen. LOL!
Monday and Tuesday was a clinic for diabetes management at our local hospital. Lori and I both went. She did pretty good. Tuesday was harder than Monday. Fortunately the classes were broken up a bit. Two six hour sessions with morning and afternoon breaks in addition to lunch.
She also sat in her new "transport chair". Similar to a wheel chair but much lighter and easier to handle for me (especially getting it in and out of the car). It was a gift from my Mom and Dad (thanks guys!) and came just in time. Here is a picture of one similar to the one she has. There is also a 4" cushion that goes on the seat.
It has been a very busy week. We had a party for my uncles 50th birthday here on Saturday (couldn't mention that in the Friday Emergency Room Visit post because the party was a surprise and Jim reads this blog!). 35 people were here. Lori didn't do a thing and just sat with her feet up before, during, or after but it was still hard on her. Sunday Lori slept. Monday and Tuesday were the classes (followed by sleep). Yesterday we took Lori's dad out to lunch for his birthday (again followed by sleep). Today she is sleeping in. Hopefully it will be one of those "never get out of your pajamas" type of days for her. Ricky and Jason are here. Maybe they can watch a movie or two with her today. They will be going back home in a couple of days and start school on Monday. It was nice having them in and out for the summer.
So . . . back to the heartbeat. As I said once we get everything together we will go to the doc and see what she says. In the mean time we are tracking Lori's heart rate and blood pressure. As always if anything happens I will post it here as quick as I can.
Oh yeah - we go back to the Hematologist on Friday. I wonder if Lori's WBC count has gone up or down since the ER visit? Your guess is as good as mine on this one.
Tuesday we requested the records from our trip to the Emergency Room on Friday. Hopefully we will have them in a couple of days. Once we receive them we will go to Dr. Peditto and see what she has to say. Possibly a trip to the cardiologist is in our future? It is one of the last remaining "ologists" we haven't seen. LOL!
Monday and Tuesday was a clinic for diabetes management at our local hospital. Lori and I both went. She did pretty good. Tuesday was harder than Monday. Fortunately the classes were broken up a bit. Two six hour sessions with morning and afternoon breaks in addition to lunch.
She also sat in her new "transport chair". Similar to a wheel chair but much lighter and easier to handle for me (especially getting it in and out of the car). It was a gift from my Mom and Dad (thanks guys!) and came just in time. Here is a picture of one similar to the one she has. There is also a 4" cushion that goes on the seat.
It has been a very busy week. We had a party for my uncles 50th birthday here on Saturday (couldn't mention that in the Friday Emergency Room Visit post because the party was a surprise and Jim reads this blog!). 35 people were here. Lori didn't do a thing and just sat with her feet up before, during, or after but it was still hard on her. Sunday Lori slept. Monday and Tuesday were the classes (followed by sleep). Yesterday we took Lori's dad out to lunch for his birthday (again followed by sleep). Today she is sleeping in. Hopefully it will be one of those "never get out of your pajamas" type of days for her. Ricky and Jason are here. Maybe they can watch a movie or two with her today. They will be going back home in a couple of days and start school on Monday. It was nice having them in and out for the summer.
So . . . back to the heartbeat. As I said once we get everything together we will go to the doc and see what she says. In the mean time we are tracking Lori's heart rate and blood pressure. As always if anything happens I will post it here as quick as I can.
Oh yeah - we go back to the Hematologist on Friday. I wonder if Lori's WBC count has gone up or down since the ER visit? Your guess is as good as mine on this one.
Friday, August 19, 2005
Emergency Room Visit.
For the past few days Lori has really struggled. On Tuesday she got really nauseous. She even threw up. She had a piece of salmon for dinner. We figured it was that. Wednesday she was still feeling bad. Her weakness was getting worse along with her dizziness. It was getting to the point where every time she would stand up she got dizzy.
Today she was even worse. Lori checked her symptoms on the web and found out she was dehydrated. She had started taking her diuretic again last week. The fact that she was dehydrated seemed to make sense, even though Lori drinks plenty of water. With it being Friday and the weekend coming up we thought we had better call Dr Peditto. She said to go to the Emergency Room. We asked her to call ahead and tell them what she wanted done. So, we grabbed "the book" and a couple of face masks (for Lori to wear) and we were off to the ER.
There was no waiting at the hospital when we arrived. The triage nurse had Dr Peditto's orders and took blood right away. By the time she was done the nurse from the back was waiting to take Lori to her bed. We told her we thought she was dehydrated and needed a bag of fluids to get her going again.
To make a long story short (six hours worth of tests) Lori received her bag of "juice"' and we were on our way.
BUT ! ! !
2 things:
1- Lori's white blood cell count has dropped again. It is back to 2.3
2- One of the tests they did was a very different type of blood pressure test. The way they do it is first they test her while she is lying flat. Second they test her sitting up. Last they ask her to stand up and test her again. Each time they test her blood pressure and heart rate. The results were alarming. Whenever she stands up her heart rate races to around 150 and her blood pressure drops.
This was not good. It would explain ALOT of what has been going on for a while. As I have posted recently Lori would seem to be doing OK until she tried to do something. Once up and about she would get super weak almost right away. She would sit with her feet up and feel much better in a couple of minutes. Then, if she tried to get up, it would happen all over again. This might also explain why she gets so tired while taking a shower.
The nurse and the "junior doctor" both said Lori would have to be admitted. When we talked to the Doctor about being admitted. He said he would let her go home if we monitor her, keep hydrating her, and follow up with Dr Peditto next week. His biggest concern was that due to her lowered white blood cell count she would get sick while in the hospital.
We really need to follow up with this and find out what's going on. It's amazing that with all of the Doctors we have seen and all of the hospitals we have been to, nobody has performed this type of test. We're not sure where it will lead but I will let you know as soon as we find out.
Today she was even worse. Lori checked her symptoms on the web and found out she was dehydrated. She had started taking her diuretic again last week. The fact that she was dehydrated seemed to make sense, even though Lori drinks plenty of water. With it being Friday and the weekend coming up we thought we had better call Dr Peditto. She said to go to the Emergency Room. We asked her to call ahead and tell them what she wanted done. So, we grabbed "the book" and a couple of face masks (for Lori to wear) and we were off to the ER.
There was no waiting at the hospital when we arrived. The triage nurse had Dr Peditto's orders and took blood right away. By the time she was done the nurse from the back was waiting to take Lori to her bed. We told her we thought she was dehydrated and needed a bag of fluids to get her going again.
To make a long story short (six hours worth of tests) Lori received her bag of "juice"' and we were on our way.
BUT ! ! !
2 things:
1- Lori's white blood cell count has dropped again. It is back to 2.3
2- One of the tests they did was a very different type of blood pressure test. The way they do it is first they test her while she is lying flat. Second they test her sitting up. Last they ask her to stand up and test her again. Each time they test her blood pressure and heart rate. The results were alarming. Whenever she stands up her heart rate races to around 150 and her blood pressure drops.
This was not good. It would explain ALOT of what has been going on for a while. As I have posted recently Lori would seem to be doing OK until she tried to do something. Once up and about she would get super weak almost right away. She would sit with her feet up and feel much better in a couple of minutes. Then, if she tried to get up, it would happen all over again. This might also explain why she gets so tired while taking a shower.
The nurse and the "junior doctor" both said Lori would have to be admitted. When we talked to the Doctor about being admitted. He said he would let her go home if we monitor her, keep hydrating her, and follow up with Dr Peditto next week. His biggest concern was that due to her lowered white blood cell count she would get sick while in the hospital.
We really need to follow up with this and find out what's going on. It's amazing that with all of the Doctors we have seen and all of the hospitals we have been to, nobody has performed this type of test. We're not sure where it will lead but I will let you know as soon as we find out.
Monday, August 15, 2005
Comments Are Enabled
I have enabled the "Comments" section of the site. At the end of each post you will find "posted by lyonsden5 @ 6:00 PM 0 comments". If you want to leave a comment OR a message for Lori simply click on the word "comments" That will open up a new window.
Once there type your message in the "Leave your comment" box. Please check the "other" section just below the box and leave your name so we know who you are. When you are done click the "Publish Your Comment" button.
That's it.
Please don't feel you have to comment on anything, it's just an option that I thought I would offer to anyone who reads this.
Once there type your message in the "Leave your comment" box. Please check the "other" section just below the box and leave your name so we know who you are. When you are done click the "Publish Your Comment" button.
That's it.
Please don't feel you have to comment on anything, it's just an option that I thought I would offer to anyone who reads this.
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