Quick recap on the lab results - BETTER THAN LAST MONTH.
Protein went from 8000 (ish) to 6000 (ish). Other tests were better too. The treatment is working (so did the steroids though). Dr Tumlin keeps talking about the next phase of treatment. He has mentioned a few things. Next month we need to get more info on just what will happen next.
The trip itself went pretty good this time. We had some trouble - in fact a lot of trouble - in the hospital getting a proper room. . . but I don't really want to get into it again. It is over.
The treatment went as expected. We left the hospital after the treatment and went back to the hotel. That really does work well for Lori. We had the late check out ready . . . but Lori wanted to try getting home all in one day so we got going around 9:30. (We tried the 1st time to go all the way home the next day and only made it to Macon.)
This time we were a bit more prepared. We brought the 4 big couch pillows to put in the back seat. I covered them and the seat with a sheet and threw 3 more pillows from our bed back there too. We left the hotel right around 11:00. Lori stayed in the front seat for a couple of hours. At 2:00 she took 3 Benedryls and headed for the back seat. She slept on and off the rest of the way home. (yeah)
It is now 5:00 on Saturday and, while she is going through most of the same stuff as last time, she has skipped the nausea this time. (again - yeah) Not sure why but there are a few things different this month.
1) Lori is taking her nausea medicine every six hours instead of eight.
2) The Cytoxin dose was less this time than last month.
3) Stretching out in the car along with the benedryl probably helped to keep it from starting.
So - I guess this time is going pretty good. Hopefully this is a sign of what the next week will bring. Maybe it wont be too bad.
Mike did get a little freaked when he saw her yesterday. No one has seen Lori 24 hours after the treatment prior to yesterday except me. She really does turn a lovely shade of purple . . .
Saturday, April 30, 2005
Tuesday, April 26, 2005
Almost Here Again
We get results of leb tests today. I wont get a chance to post them before we leave for Atlanta. I will post everything I can when we get up there.
We leave tomorrow (Wednesday) . Lori has her treatment on Thursday.
Talk to you soon.
We leave tomorrow (Wednesday) . Lori has her treatment on Thursday.
Talk to you soon.
Friday, April 15, 2005
WOW - No Idea What Happened!
O.K. So we were going along pretty good and BAM - in bed for two days now. Headache, bodyaches, sore throat, nausea. This is supposed to be the good week!!!
R & J came for dinner. Lori was going to cook. Didn't happen I cooked - they helped. (it was yummy - pork loin on the grille with lot's of other stuff). Lori did make it out of bed to eat a bit with us and to sit with R & J for a bit.
Not a lot to say other than that.
Next week - blood tests and then we're off to Atlanta the following week
R & J came for dinner. Lori was going to cook. Didn't happen I cooked - they helped. (it was yummy - pork loin on the grille with lot's of other stuff). Lori did make it out of bed to eat a bit with us and to sit with R & J for a bit.
Not a lot to say other than that.
Next week - blood tests and then we're off to Atlanta the following week
Monday, April 11, 2005
Hot tub - Taxes - and Long Term Disability
As I said in an earlier post I’m really glad we bought the hot tub last year. It brings Lori such relief. We put up a "beach" umbrella on one side so she can go in during the day. I think I will go to Lowes and get a picnic table size one. Hmmmm. . .
She is having trouble with her hips really bad again. Maybe it’s time for another shot. The hand cramps come and go. Not as bad as they have been in the past. They do seem to happen at the worst times though.
We did our taxes this weekend. Could have been worse I guess. I don’t think Lori was too stressed out over it in the past few weeks since we have some $$$ set aside. I do know we were both relieved when we finished. She made a lot less than last year (duh). Also her Disability income shows up as "non-taxable sick pay" (very cool). All we have to do now is stroke out the check and get it in the mail.
The past couple of weeks have been up and down. If she has the energy to do anything like cook dinner she pays for it the next day. She has spent a lot of time designing her new office. More on that soon.
Lori’s personal leave time is all used up at the spa. She is no longer on the books in any capacity. Her short term disability is over at the end of May. She received a package from the insurance company to convert it to long term on Friday. Lots of forms to fill out (again). We’re going to see Dr Pedito this week and bring her a stack. Hopefully the transition from short term to long term will go smooth. That sure does come in handy!
Lori is also going to get the Social Security Disability forms to bring to Dr Pedito at the same time. Might as well get that ball rollin too. We’ve heard lots of horror stories about this process. With all Lori has been through somehow I think we can handle this one. It may just take time – which right now we have plenty of.
Oh yeah - today is one of those bad days. Lots of pain, foggy head, headache, and fatigue. . . and don't forget the slight but constant feeling that she is going to throw up. Just another day around here. . .
Monday, April 04, 2005
Same as last month - only worse.
Tomorrow will be a week since Lori's treatment. She just started coming around a bit yesterday. It's getting rougher each month. She was so out of it this week. Thursday she said just breathing wiped her out. Friday was better - breathing didn't hurt but talking did.
Saturday she woke up with a bit more energy but all of the muscles and joints started really aching. She managed to cook us a wonderful dinner though. Unfortunately her hand cramps came back while she was cooking.
Today, after dinner she threw-up. She did complain before we ate of some cramping. She seemed to be OK later.
She does seem to get some relief from going in the Hot Tub. We've been going once a day - I suggested that we start going in the morning and then the evening. I'm really glad we got that this year.
I post more when I get a chance.
Saturday she woke up with a bit more energy but all of the muscles and joints started really aching. She managed to cook us a wonderful dinner though. Unfortunately her hand cramps came back while she was cooking.
Today, after dinner she threw-up. She did complain before we ate of some cramping. She seemed to be OK later.
She does seem to get some relief from going in the Hot Tub. We've been going once a day - I suggested that we start going in the morning and then the evening. I'm really glad we got that this year.
I post more when I get a chance.
Thursday, March 31, 2005
3 down - 3 to go
We are half way through the chemo treatments . . . we hope. The initial treatment was to be for six months. Still hoping that is all it takes.
Our trip was a little better than last month.
We met with Dr Tumlin on Monday at 8:15 a.m. While he was pleased with the progress of Lori's labs he also discussed another treatment in case this one does not work. It is called Rituxan. http://www.gene.com/gene/products/information/oncology/rituxan/index.jsp He called it an "out of the box" treatment for Lori's condition. He did say that we would complete the six months of Cytoxin treatments before we tried this next one. Hopefully the Cytoxin will work. The monthly trips are already getting tiresome.
After the Dr appt. we went to the hospital to get checked in. The lady at the registration counter recognized us and had our paperwork ready when we got to the desk. She is really nice. She told Lori she looked better than she did last month. She got us checked in and to the CIU (care initiation unit) room right away. This is where they start any procedures while waiting for a regular hospital bed. It seems to be a pretty good setup to keep you from sitting in a lobby waiting for a bed.
Everything went rather quickly form there. This was a good thing. The entire course of treatment takes 13 to 14 hours from the time they start the IV. Since we wanted to leave after the treatment was finished we were glad things were going quickly.
Lori got her chemo at around 5:00. It had the same effect as the previous two times, skin color change, burning feeling through her veins, and then getting hot. We tried to keep her from getting too hot with wet cool rags over the next few hours. This time she slept for most of the day. (I think she was tired from getting ready for Mike's party.) The treatment was completed right around midnight. We told the nurse we wanted to check out right away, called the valet for the car, and headed out.
Getting back to the hotel room to sleep the night seemed to work. Lori would typically get too hot in the hospital bed (plastic sheets and pillows didn't help). She did not get nauseous at all that night or in the morning. She did wake up with the same killer headache she had experienced previously. After some breakfast we decided to hit the road a bit earlier than planned.
Since Lori was doing better than we had hoped we went all the way to Lake City before stopping for the night. Not a moment too soon either. In fact we probably should have stopped in Georgia. Lori was declining pretty fast. We went to the Holiday Inn - no rooms. WHAT!?! OK . . . not panicking we went to the Hampton - no rooms. Still not panicking but really beginning to worry. We next tried the Quality Inn - no rooms. (OK . . . panic time). Fortunately for us there was a very nice lady at the Quality Inn. I told her of our dilemma and asked if Lori could sit in her lobby while I figured out what to do. She said Lori could sit there as long as she needed to. I escorted Lori in from the car and she went right to the restroom (let the nausea begin). After she was through I got her to a chair in the lobby. The lady at the desk said she had found us a room and had the hotel on the phone. (Thank you nice lady)
Ten minutes later we were in our room at the Best Western. It turns out there was some kind of Water School going on for municipalities of the state to attend. 700 rooms were being used. We were lucky we found a nice room for ourselves.
Lori only got sick a couple of times. She was well enough later that evening to eat. We slept until around 10:00 the next morning and then got on the road again. She felt just so-so and was beginning to get the achy pains she had last month.
Again she was turning bad fast. We made it home around 2:00. She pretty much passed out on the couch as soon as we got home. As the day went on she felt worse. She ate only a small Blizzard from Dairy Queen (mmmm. . . blizzard).
Today she woke up feeling pretty crappy. Very sore all over and zero energy. Hopefully she will start feeling better in the next couple of days. After all - we start it all again in just three short weeks.
Our trip was a little better than last month.
We met with Dr Tumlin on Monday at 8:15 a.m. While he was pleased with the progress of Lori's labs he also discussed another treatment in case this one does not work. It is called Rituxan. http://www.gene.com/gene/products/information/oncology/rituxan/index.jsp He called it an "out of the box" treatment for Lori's condition. He did say that we would complete the six months of Cytoxin treatments before we tried this next one. Hopefully the Cytoxin will work. The monthly trips are already getting tiresome.
After the Dr appt. we went to the hospital to get checked in. The lady at the registration counter recognized us and had our paperwork ready when we got to the desk. She is really nice. She told Lori she looked better than she did last month. She got us checked in and to the CIU (care initiation unit) room right away. This is where they start any procedures while waiting for a regular hospital bed. It seems to be a pretty good setup to keep you from sitting in a lobby waiting for a bed.
Everything went rather quickly form there. This was a good thing. The entire course of treatment takes 13 to 14 hours from the time they start the IV. Since we wanted to leave after the treatment was finished we were glad things were going quickly.
Lori got her chemo at around 5:00. It had the same effect as the previous two times, skin color change, burning feeling through her veins, and then getting hot. We tried to keep her from getting too hot with wet cool rags over the next few hours. This time she slept for most of the day. (I think she was tired from getting ready for Mike's party.) The treatment was completed right around midnight. We told the nurse we wanted to check out right away, called the valet for the car, and headed out.
Getting back to the hotel room to sleep the night seemed to work. Lori would typically get too hot in the hospital bed (plastic sheets and pillows didn't help). She did not get nauseous at all that night or in the morning. She did wake up with the same killer headache she had experienced previously. After some breakfast we decided to hit the road a bit earlier than planned.
Since Lori was doing better than we had hoped we went all the way to Lake City before stopping for the night. Not a moment too soon either. In fact we probably should have stopped in Georgia. Lori was declining pretty fast. We went to the Holiday Inn - no rooms. WHAT!?! OK . . . not panicking we went to the Hampton - no rooms. Still not panicking but really beginning to worry. We next tried the Quality Inn - no rooms. (OK . . . panic time). Fortunately for us there was a very nice lady at the Quality Inn. I told her of our dilemma and asked if Lori could sit in her lobby while I figured out what to do. She said Lori could sit there as long as she needed to. I escorted Lori in from the car and she went right to the restroom (let the nausea begin). After she was through I got her to a chair in the lobby. The lady at the desk said she had found us a room and had the hotel on the phone. (Thank you nice lady)
Ten minutes later we were in our room at the Best Western. It turns out there was some kind of Water School going on for municipalities of the state to attend. 700 rooms were being used. We were lucky we found a nice room for ourselves.
Lori only got sick a couple of times. She was well enough later that evening to eat. We slept until around 10:00 the next morning and then got on the road again. She felt just so-so and was beginning to get the achy pains she had last month.
Again she was turning bad fast. We made it home around 2:00. She pretty much passed out on the couch as soon as we got home. As the day went on she felt worse. She ate only a small Blizzard from Dairy Queen (mmmm. . . blizzard).
Today she woke up feeling pretty crappy. Very sore all over and zero energy. Hopefully she will start feeling better in the next couple of days. After all - we start it all again in just three short weeks.
Thursday, March 24, 2005
Progress?
We got the lab results yesterday and there was some good news. The protein in Lori’s blood was up a bit from last month and the protein in the urine was down (both are good). They are both about the same as they were when we started the chemo at the end of January. Not a “holler from the rooftop” type of result but we will gladly take any positive movement we can get.
There was a new concern that showed up. Her blood platelet count was up. It is “out of range” on the high end. The platelets are small fragments of the blood cells, which stick to each other to form blood clots. With Lori’s Antiphospholipid Anti Bodies floating around this is something we need to watch. (The Antiphospholipid Anti Bodies make the platelets stick together faster.) It looks like we will have lots of stops on our way up to Atlanta to get out and stretch.
Her ANA Screen was positive and speckled – which means her lupus is active again. The last couple of months it has been borderline active. Calcium still low. In fact it is one of the few things that is worse than last month. He didn’t test her cholesterol this time. I’m not sure why. Could be the tests aren’t truly accurate when the liver is overproducing so much to compensate for the kidneys. Just a guess. Her bilirubin has been at the low end of the scale for three months now. I’m sure that is a factor in the funky skin color (or lack there of) Lori has some times.
I think overall it was a good set of labs. The biggest thing was the protein in the urine going down. Now we have to see what Dr. Tumlin’s reaction will be on Monday.
There was a new concern that showed up. Her blood platelet count was up. It is “out of range” on the high end. The platelets are small fragments of the blood cells, which stick to each other to form blood clots. With Lori’s Antiphospholipid Anti Bodies floating around this is something we need to watch. (The Antiphospholipid Anti Bodies make the platelets stick together faster.) It looks like we will have lots of stops on our way up to Atlanta to get out and stretch.
Her ANA Screen was positive and speckled – which means her lupus is active again. The last couple of months it has been borderline active. Calcium still low. In fact it is one of the few things that is worse than last month. He didn’t test her cholesterol this time. I’m not sure why. Could be the tests aren’t truly accurate when the liver is overproducing so much to compensate for the kidneys. Just a guess. Her bilirubin has been at the low end of the scale for three months now. I’m sure that is a factor in the funky skin color (or lack there of) Lori has some times.
I think overall it was a good set of labs. The biggest thing was the protein in the urine going down. Now we have to see what Dr. Tumlin’s reaction will be on Monday.
Wednesday, March 23, 2005
Still waiting
Wednesday Morning
Still waiting on the test results. They were supposed to all be back yesterday. I'm sure we will hear from the Dr. today. My fingers are cramped from being crossed for three days.
Lori says she feels a bit better today than she has in the past couple of days. Her face broke out pretty bad yesterday. . . color was off a bit too. She does look better today but still no sparkle in her eyes.
She picked up her medicine for next weeks Atlanta visit (for nausea) . Pricey little suckers. They don't seem to work but we don't know what it would be like if she didn't have them. Maybe they do work.
It's a stormy morning here today. We've had lots of rain in the past couple of weeks but today it's thunderstorms. Kinda gloomy feeling. the type of weather that makes you want to stay in bed all day and watch movies. Ah . . . . . sleep . . . . . .
Still waiting on the test results. They were supposed to all be back yesterday. I'm sure we will hear from the Dr. today. My fingers are cramped from being crossed for three days.
Lori says she feels a bit better today than she has in the past couple of days. Her face broke out pretty bad yesterday. . . color was off a bit too. She does look better today but still no sparkle in her eyes.
She picked up her medicine for next weeks Atlanta visit (for nausea) . Pricey little suckers. They don't seem to work but we don't know what it would be like if she didn't have them. Maybe they do work.
It's a stormy morning here today. We've had lots of rain in the past couple of weeks but today it's thunderstorms. Kinda gloomy feeling. the type of weather that makes you want to stay in bed all day and watch movies. Ah . . . . . sleep . . . . . .
Monday, March 21, 2005
Getting ready for more test results.
We'll - another month has gone by. Lori went for all of her tests on Friday. We should be getting the results tomorrow to take with us next week to Atlanta. Hopefully there will be some positive movement this time.
Lori's been feeling pretty bad for the past 2 days. Prior to that she was doing ok.
She managed to cook a few meals (which really wiped her out). She drove herself to get her blood work done last week. She has also been keeping up with the laundry. Maybe all of those things combined are taking their toll. Hard to say.
Her hand cramps aren't all the time anymore (again). The paraffin treatments seem to work. If the doc's can't figure it out at least there is some relief for now. We can worry about it later . . . I guess.
I'm sure I'll be checking in tomorrow or the next day when we have the test results in hand. Everybody cross your fingers. . .
Lori's been feeling pretty bad for the past 2 days. Prior to that she was doing ok.
She managed to cook a few meals (which really wiped her out). She drove herself to get her blood work done last week. She has also been keeping up with the laundry. Maybe all of those things combined are taking their toll. Hard to say.
Her hand cramps aren't all the time anymore (again). The paraffin treatments seem to work. If the doc's can't figure it out at least there is some relief for now. We can worry about it later . . . I guess.
I'm sure I'll be checking in tomorrow or the next day when we have the test results in hand. Everybody cross your fingers. . .
Friday, March 11, 2005
Finally a good news post.
Lori went to a Doctor today and the Doctor didn't find anything new wrong with her!
She had a visit with her new Gynecologist. Everything went great. Lori really liked her. The Dr kept saying "you poor thing" when she was talking to her about all of her conditions. She thought Lori was a very upbeat person and had a very positive outlook ( . . . duh - like we all didn't know that). It was just nice for once to go to the Doc and not come out of the visit with new or worsening problems.
Lori had to go to bed afterward . . . but this is a good news post ;)
She had a visit with her new Gynecologist. Everything went great. Lori really liked her. The Dr kept saying "you poor thing" when she was talking to her about all of her conditions. She thought Lori was a very upbeat person and had a very positive outlook ( . . . duh - like we all didn't know that). It was just nice for once to go to the Doc and not come out of the visit with new or worsening problems.
Lori had to go to bed afterward . . . but this is a good news post ;)
Thursday, March 10, 2005
Hand Hand Fingers Thumb
Dum ditty dum ditty dum dum dum.
The book was great as for the kids but it has a different meaning for us now. Lori used to get terrible hand cramps. They would deform her hands for a few minutes and hurt. They’re back and worse than ever.
For the past week she has been dealing with it. She has to run them under hot water and massage them to relieve the cramp. Tuesday night when I came home from a Band Booster Meeting she was sitting in a chair with the heating pad wrapped around her hands. She was in tears from the pain.
We have previously asked all of Lori’s Doctors about it. Most say they didn’t know what it was and kind of dismissed it. Dr Pedito said it could be that she was low in Potassium. We bought a hand paraffin wax machine to treat her hands a while ago. She stopped using it before Christmas. We dug it out the other day and fired it up. She now does three treatments a day as a preventative treatment. It seems to have worked. No real bad cramping in 24 hours – just some minor ones.
It would really help if we knew what the cause is. Her potassium seems to be fine – so we don’t think it is from that. There is some information on the web that says it could be a side effect of chronic renal failure. The problem with that being the cause is she was having the cramps before the kidneys started acting up.
The Intern in Atlanta said Lori should have her Thyroid checked. That could be the cause. We go see Dr Pedito next week. Well check with her and see if she agrees with the Thyroid thing. Perhaps she will sent us to an endocrinologist.
That would be just what we need – another “ologist” to go see.
Sunday, March 06, 2005
A week has past
A week has past since the treatment. Lori feels terrible. We were hoping for some relief by now. At this point we’re not even sure if it’s due to the chemo or the disease. Dr. Tumlin did say that with her level of proteinuria she will feel lousy.
Yesterday Lori managed to get the energy to go see Nikki (Mike’s girlfriend) perform at a competition held at their school. This is what it took to do that. When Lori got up she got her clothes ready. Shoes, socks, everything. Then rest. A while later (about 2 hours) she took a shower. This required a nap afterward. Once up from her nap she brushed her teeth and hair. She then rested on the couch and watched a movie until it was time to go. She got dressed and we were off. We used the wheel chair once we got there. Mike pushed her to where Nikki was so we could wish her luck and then we went to the gym to watch. the show. After they performed we went back to the car and then home. The whole trip was around 1 hour yet it completely drained her of any strength she had. She spent the rest of the day sleeping on and off. When I woke her from the couch and sent her to bed at around midnight you could just see the weakness in her eyes. Even in the dark it was obvious.
Today (Sunday) she didn’t look much better. She says she feels like a wet noodle. I blew up the airbed so she could stretch out downstairs and not have to climb the stairs to lie down in the bed. We will probably leave it like that for the next couple of days.
I just wish there was something that I could do for her.
Yesterday Lori managed to get the energy to go see Nikki (Mike’s girlfriend) perform at a competition held at their school. This is what it took to do that. When Lori got up she got her clothes ready. Shoes, socks, everything. Then rest. A while later (about 2 hours) she took a shower. This required a nap afterward. Once up from her nap she brushed her teeth and hair. She then rested on the couch and watched a movie until it was time to go. She got dressed and we were off. We used the wheel chair once we got there. Mike pushed her to where Nikki was so we could wish her luck and then we went to the gym to watch. the show. After they performed we went back to the car and then home. The whole trip was around 1 hour yet it completely drained her of any strength she had. She spent the rest of the day sleeping on and off. When I woke her from the couch and sent her to bed at around midnight you could just see the weakness in her eyes. Even in the dark it was obvious.
Today (Sunday) she didn’t look much better. She says she feels like a wet noodle. I blew up the airbed so she could stretch out downstairs and not have to climb the stairs to lie down in the bed. We will probably leave it like that for the next couple of days.
I just wish there was something that I could do for her.
Friday, March 04, 2005
Back From Chemo Treatment.
It's Friday morning.
We made it back yesterday afternoon at about 1:30. Lori did not do well at all.
Sunday:
We arrived Sunday evening around 10:30. I was still working at 11:00 a.m. and then we went to see Ricky & Jason on the way out of town. We left their apt around 3:30 p.m. The drive went pretty good. The hotel was nice - not the 2-room layout I thought we were getting but it was an oversized room with a desk, table & chairs, 2 queen beds, sitting chair, fridge, stove, microwave, and TV. It would be very comfortable for the next few days.
Monday:
Monday we went to breakfast around 8:00. We had a typical Holiday Inn continental breakfast. Our Dr appt was for 8:30. We left the hotel at 8:15 and made it with no problem. We had to wait about an hour to see Dr Tumlin (we usually do). It appeared that he had not seen the labs we sent last week to him. He asked for a copy and started to review them. When he got to the 24 urine results he froze for at least 5 seconds before responding. Then he said "this is not good . . . I'm surprised at this". He was referring to the proteinuria (amount of protein in the urine). Last month he told us to expect this number to go down (from 7900) and we should start seeing results right away. We really caught him off guard when he saw it was 11,400. He said "she is now in the major leagues". He repeated a number of times how surprised he was. I asked him if he was just surprised or surprised and concerned. After a lengthy pause he said, "Surprised and a little concerned". He said again that she was "in the major leagues" also stating that she had the "Mark McGuire of proteinuria". He did tell us that the most on record was 45,000. He tried to assure us by saying he has had other patients that show no sign of getting better until after the third treatment. I guess we will have to see. If you could have only seen the look on his face . . . After he left the room I heard him dictating his notes. In there he stated that he "wasn't sure if the treatment will even work at this point"
He changed the admit orders and upped the Chemo dose from 1.5 g to 2.0 g. He also had the dose infused over 30 minutes this time (last month it was 1 hour). Another difference from last month was he removed the lasix from the treatment.
We got to our 1st room in the hospital about 11:00 (Lori had 2 rooms). They started with the usual stuff in preparation for the treatment. The nurse had some trouble with hematomas forming when she tried to insert the IV. After the 3rd try she got it. We found this unusual because Lori usually has no problems producing a good vein. The nurse said it probably due to the chemo treatment. Let's hope not. After only one that would not be good.
Lori slept more this time while we were there than she did last time. My guess is because she wasn't as stressed out about what to expect. I set up the laptop and worked while Lori slept. They were supposed to move Lori to anther room prior to starting the chemo but at 6:00 there was still no other room available. They instead brought a "chemo nurse" down to where Lori was. She administered the treatment without any trouble. Just like last month Lori turned colors after about 45 minutes. She also felt a little sick. It wasn't until around 9:00 when they had a bed to move her to. She had to be moved. The area she was in was an area the hospital set up to start procedures on patients that were being admitted prior to them having an actual bed. It was a real nice room on the ground level with a nice view of the campus. We never even turned on the TV while we were there.
Tuesday:
By the time I arrived at 8:00 the next morning Lori was ready to leave. She had been sick earlier and didn't look good at all. I guess this is what we can expect for the rest of the treatments. I took her to the hotel and put her to bed. She slept for the next few hours getting up only to get sick and once for about 15 minutes when it was snowing outside. She got sick about every hour until around 2:00.
Avery and Morgan came to visit at 3:00. I met them in the lobby and told them they could come see auntie Lori for a few minutes. They stayed for about 30 minutes. Lori did pretty good. She went back to sleep after they left. Around 6:00 she said she had a taste for an oriental chicken salad from Applebee's. (Good sign - maybe the worst was over). I found one not too far away and went to get dinner. The rest of the evening Lori did pretty good . . . kinda in and out of it but not getting sick.
Wednesday:
Go home today. Maybe staying the night in Atlanta was the key . . . NOT. Lori woke up feeling pretty rotten. We packed up and headed out around 9:30. Even with lots of stops we should be home in time for dinner. She seemed to get worse as we drove. By 11:30 she was feeling pretty crappy. We stopped at a rest stop. I was also feeling tired (still don't know why) so we decided to stay at the rest stop and rest for a bit. We pulled around back and laid the seats back. After about 45 minutes we got back on the road again. We stopped in Tifton to stretch and to get gas & lunch. Lori didn't look too bad but she said she was feeling terrible. At this point we were still planning on getting home later that day. After driving for another 1/2 hour Lori decided that the only way she would make it home is if she slept the rest of the way.
This lasted for a bit but by the time we got to Valdosta she said she didn't think she could make it another 3 - 4 hours. We got off just south of Valdosta and got a room for the night. It was about 3:00 when we got settled in. She got sick a few more times and just slept. I went and found a grocery store and got some soup, crackers, Gatorade, and ginger ale. About 7:00 she ate - stayed up for another hour - then went back to sleep. I don't believe she got sick anymore after that.
Thursday:
Thursday she woke up feeling like she had taken a beating from someone. With only a few hours left we got on the road. We got home around 2:00 and Lori went right to bed. It was bad for her this time. She slept right through dinner and into the next morning.
Friday:
Lori is feeling a bit better today. She had some breakfast and lunch. Maybe it's over . . . until next month.
We really don't know what to do next month. Flying is not really an option. It would take around 4-5 hours to fly (counting rental cars, sequitur lines, etc.). At this time it just doesn't seem to be a good option.
Staying in Atlanta worked for the 1st day but left the long drive the next day which didn't work at all and ended up adding a day to the trip. We could get the treatments done here locally. The major trouble with that is there would be another doctor in charge. At this time we don't want to do that. Lori wants to wait until after next month to do that. We already know that there is no one in the Tampa area Dr Tumlin would recommend. Perhaps he knows someone in Gainesville at Shands . . . A 2-3 hour trip would be a lot better.
So, as it stands right now here is the plan for next month - We are going to get as late of a checkout on Tuesday from our hotel as possible. Holiday Inn Priority Club members can have 2:00 check out - I'll see if I can get 3:00 or later. So that way we can leave the hospital Tuesday a.m. and go to the room. Check out late afternoon and start to drive. Hopefully we will make it somewhere south of Macon. Tifton would be nice - Valdosta or farther would be great. We can then get a room for Tuesday night there (with late check out if possible - even 12:00 noon would be good). From there we would drive home on Wednesday.
Like Lori said "Just about the time we're done with the treatments we'll have it figured out"
We made it back yesterday afternoon at about 1:30. Lori did not do well at all.
Sunday:
We arrived Sunday evening around 10:30. I was still working at 11:00 a.m. and then we went to see Ricky & Jason on the way out of town. We left their apt around 3:30 p.m. The drive went pretty good. The hotel was nice - not the 2-room layout I thought we were getting but it was an oversized room with a desk, table & chairs, 2 queen beds, sitting chair, fridge, stove, microwave, and TV. It would be very comfortable for the next few days.
Monday:
Monday we went to breakfast around 8:00. We had a typical Holiday Inn continental breakfast. Our Dr appt was for 8:30. We left the hotel at 8:15 and made it with no problem. We had to wait about an hour to see Dr Tumlin (we usually do). It appeared that he had not seen the labs we sent last week to him. He asked for a copy and started to review them. When he got to the 24 urine results he froze for at least 5 seconds before responding. Then he said "this is not good . . . I'm surprised at this". He was referring to the proteinuria (amount of protein in the urine). Last month he told us to expect this number to go down (from 7900) and we should start seeing results right away. We really caught him off guard when he saw it was 11,400. He said "she is now in the major leagues". He repeated a number of times how surprised he was. I asked him if he was just surprised or surprised and concerned. After a lengthy pause he said, "Surprised and a little concerned". He said again that she was "in the major leagues" also stating that she had the "Mark McGuire of proteinuria". He did tell us that the most on record was 45,000. He tried to assure us by saying he has had other patients that show no sign of getting better until after the third treatment. I guess we will have to see. If you could have only seen the look on his face . . . After he left the room I heard him dictating his notes. In there he stated that he "wasn't sure if the treatment will even work at this point"
He changed the admit orders and upped the Chemo dose from 1.5 g to 2.0 g. He also had the dose infused over 30 minutes this time (last month it was 1 hour). Another difference from last month was he removed the lasix from the treatment.
We got to our 1st room in the hospital about 11:00 (Lori had 2 rooms). They started with the usual stuff in preparation for the treatment. The nurse had some trouble with hematomas forming when she tried to insert the IV. After the 3rd try she got it. We found this unusual because Lori usually has no problems producing a good vein. The nurse said it probably due to the chemo treatment. Let's hope not. After only one that would not be good.
Lori slept more this time while we were there than she did last time. My guess is because she wasn't as stressed out about what to expect. I set up the laptop and worked while Lori slept. They were supposed to move Lori to anther room prior to starting the chemo but at 6:00 there was still no other room available. They instead brought a "chemo nurse" down to where Lori was. She administered the treatment without any trouble. Just like last month Lori turned colors after about 45 minutes. She also felt a little sick. It wasn't until around 9:00 when they had a bed to move her to. She had to be moved. The area she was in was an area the hospital set up to start procedures on patients that were being admitted prior to them having an actual bed. It was a real nice room on the ground level with a nice view of the campus. We never even turned on the TV while we were there.
Tuesday:
By the time I arrived at 8:00 the next morning Lori was ready to leave. She had been sick earlier and didn't look good at all. I guess this is what we can expect for the rest of the treatments. I took her to the hotel and put her to bed. She slept for the next few hours getting up only to get sick and once for about 15 minutes when it was snowing outside. She got sick about every hour until around 2:00.
Avery and Morgan came to visit at 3:00. I met them in the lobby and told them they could come see auntie Lori for a few minutes. They stayed for about 30 minutes. Lori did pretty good. She went back to sleep after they left. Around 6:00 she said she had a taste for an oriental chicken salad from Applebee's. (Good sign - maybe the worst was over). I found one not too far away and went to get dinner. The rest of the evening Lori did pretty good . . . kinda in and out of it but not getting sick.
Wednesday:
Go home today. Maybe staying the night in Atlanta was the key . . . NOT. Lori woke up feeling pretty rotten. We packed up and headed out around 9:30. Even with lots of stops we should be home in time for dinner. She seemed to get worse as we drove. By 11:30 she was feeling pretty crappy. We stopped at a rest stop. I was also feeling tired (still don't know why) so we decided to stay at the rest stop and rest for a bit. We pulled around back and laid the seats back. After about 45 minutes we got back on the road again. We stopped in Tifton to stretch and to get gas & lunch. Lori didn't look too bad but she said she was feeling terrible. At this point we were still planning on getting home later that day. After driving for another 1/2 hour Lori decided that the only way she would make it home is if she slept the rest of the way.
This lasted for a bit but by the time we got to Valdosta she said she didn't think she could make it another 3 - 4 hours. We got off just south of Valdosta and got a room for the night. It was about 3:00 when we got settled in. She got sick a few more times and just slept. I went and found a grocery store and got some soup, crackers, Gatorade, and ginger ale. About 7:00 she ate - stayed up for another hour - then went back to sleep. I don't believe she got sick anymore after that.
Thursday:
Thursday she woke up feeling like she had taken a beating from someone. With only a few hours left we got on the road. We got home around 2:00 and Lori went right to bed. It was bad for her this time. She slept right through dinner and into the next morning.
Friday:
Lori is feeling a bit better today. She had some breakfast and lunch. Maybe it's over . . . until next month.
We really don't know what to do next month. Flying is not really an option. It would take around 4-5 hours to fly (counting rental cars, sequitur lines, etc.). At this time it just doesn't seem to be a good option.
Staying in Atlanta worked for the 1st day but left the long drive the next day which didn't work at all and ended up adding a day to the trip. We could get the treatments done here locally. The major trouble with that is there would be another doctor in charge. At this time we don't want to do that. Lori wants to wait until after next month to do that. We already know that there is no one in the Tampa area Dr Tumlin would recommend. Perhaps he knows someone in Gainesville at Shands . . . A 2-3 hour trip would be a lot better.
So, as it stands right now here is the plan for next month - We are going to get as late of a checkout on Tuesday from our hotel as possible. Holiday Inn Priority Club members can have 2:00 check out - I'll see if I can get 3:00 or later. So that way we can leave the hospital Tuesday a.m. and go to the room. Check out late afternoon and start to drive. Hopefully we will make it somewhere south of Macon. Tifton would be nice - Valdosta or farther would be great. We can then get a room for Tuesday night there (with late check out if possible - even 12:00 noon would be good). From there we would drive home on Wednesday.
Like Lori said "Just about the time we're done with the treatments we'll have it figured out"
Thursday, February 24, 2005
Migraine Day
9:00 a.m.
Not sure if it's the stress of the labs coming back so bad, or the chemo in 4 days, or just a coincidence but Lori woke up today with a migraine. She really hasn't had one for a couple of weeks. I hope she caught it in time and it doesn't keep her down for a couple of days.
5:00 pm
Looks like she caught it in time. She has slept most of the day but she didn't seem to have the killer headache.
Not sure if it's the stress of the labs coming back so bad, or the chemo in 4 days, or just a coincidence but Lori woke up today with a migraine. She really hasn't had one for a couple of weeks. I hope she caught it in time and it doesn't keep her down for a couple of days.
5:00 pm
Looks like she caught it in time. She has slept most of the day but she didn't seem to have the killer headache.
Wednesday, February 23, 2005
WOW - what a month part II
The Friday after the Chemo treatment we had a Doctor visit with the Rheumatologist. She gave Lori a shot in the hips for her pain. She said it was bursitis in the hips that was causing the pain (just what Lori needed – another “condition”). Other than that the Dr. didn’t do or say too much except see you in 3 months. It was our second visit with her . . . the jury’s still out. We decided to try her based on the fact that she is the medical director and sits on the board of directors for the Greater Florida chapter of the Lupus Foundation. We’ll see how we feel after the next visit.
The shots in the hips seemed to help Lori a lot. She was also hoping the chemo treatment did something good. Dr Tumlin had said that he was expecting better Labs the next time he saw us.
Lori had some pretty good days over the past three weeks. She also had some pretty bad ones. Most were decent. It was very encouraging. She has however had some troubles with her stomach. We thing it is related to her swallowing air when she uses her CPAP machine at night. Her right eye also gets swollen quite at night – not really sure why – think it’s the CPAP machine again.
She has gained quite a bit of weight in the past month. Her ankles and feet have really swollen up too. Yesterday we got our copy of the labs for Monday’s treatment – not good
You can look a few posts down for more details but her protein in the urine was 7911 mg last month (should be <150mg). This month it was supposed to be less . . . it was not . . .it rose to over 11,400mg!!! We have no idea what this means. Hopefully we will find out on Monday.
Her total Cholesterol has also risen from 240 last month (high) to 340 this month with her LDL (the bad one) over 218. Her white blood count is too low. Her Protein and Albumin in the blood are both lower than last month. It will be interesting to see what Dr. Tumlin has to say about this on Monday.
Hopefully we will have some good news when we get back from Atlanta next week. I’ll post the results of our trip as soon as I can
The shots in the hips seemed to help Lori a lot. She was also hoping the chemo treatment did something good. Dr Tumlin had said that he was expecting better Labs the next time he saw us.
Lori had some pretty good days over the past three weeks. She also had some pretty bad ones. Most were decent. It was very encouraging. She has however had some troubles with her stomach. We thing it is related to her swallowing air when she uses her CPAP machine at night. Her right eye also gets swollen quite at night – not really sure why – think it’s the CPAP machine again.
She has gained quite a bit of weight in the past month. Her ankles and feet have really swollen up too. Yesterday we got our copy of the labs for Monday’s treatment – not good
You can look a few posts down for more details but her protein in the urine was 7911 mg last month (should be <150mg). This month it was supposed to be less . . . it was not . . .it rose to over 11,400mg!!! We have no idea what this means. Hopefully we will find out on Monday.
Her total Cholesterol has also risen from 240 last month (high) to 340 this month with her LDL (the bad one) over 218. Her white blood count is too low. Her Protein and Albumin in the blood are both lower than last month. It will be interesting to see what Dr. Tumlin has to say about this on Monday.
Hopefully we will have some good news when we get back from Atlanta next week. I’ll post the results of our trip as soon as I can
WOW - What a month part I
Sorry it has been so long since I posted. It has been quite a month.
We went to Atlanta on the 31st for Lori’s 1st chemotherapy treatment. Lori did not have to stay in the hospital for three days like we thought. Instead it was a “23 hour stay” (she was there for about 30 hours).
The treatment goes like this:
6 hours of saline drip to hydrate Lori. After about four hours they add some prednisone to the IV for about an hour. A shot of Benadryl is then given to her. Around 6 to 7 hours after the start of all of this they bring in the chemo medicine. It is in a normal looking IV bag . . . except for all of the radioactive warnings and special handling instructions. The nurse hooks it to the IV and sets the IV machine to administer it over 1hr. She came in to check on Lori about every 5 minutes. After the treatment she give Lori lasix. This is followed by another 6 hours of saline drip and some more lasix. Then – its done.
Lori was pretty nervous while waiting for the treatment. We really didn’t know what to expect. The chemo was administered about 8:00 Monday night. She seemed to take it fairly well – except for the fact that she turned a weird color after about 45 minutes. Then the lasix kept her up going to the bathroom for the next few hours.
Tuesday morning I was all excited. As far as I knew when I left the night before Lori had gotten through pretty good. We planned on driving a couple of hours and getting a room for the night. Everything changed as soon as I opened the door to her room. She looked TERRIBLE. She had a killer migraine and had a sour stomach. They gave her some meds for both before I had gotten there. We weren’t leaving anytime soon.
After a few hours of Lori trying to pretend she was feeling well enough to leave they discharged her. We got in the car and headed home. It took about 20 minutes for her to start throwing-up in the car. Fortunately she was prepared with bucket in hand. After about a half hour of this she fell asleep. I woke her up at Macon to see if she wanted to find a room or keep sleeping while I kept driving. She chose the room.
We got her settled in at the Hampton and I left to get a prescription for naseu medicine filled. When I came back she looked a bit better. Just sleeping in the bed was helping. She started feeling better around 8:00 that night.
The next morning she felt better. After a few stops we made it home OK.
We decided that next time we will stay in Atlanta for one more day. This way all we have to do is to go from the hospital to the hotel.rry it has been so long since I posted. It has been quite a month.
We went to Atlanta on the 31st for Lori’s 1st chemotherapy treatment. Lori did not have to stay in the hospital for three days like we thought. Instead it was a “23 hour stay” (she was there for about 30 hours).
The treatment goes like this:
6 hours of saline drip to hydrate Lori. After about four hours they add some prednisone to the IV for about an hour. A shot of Benadryl is then given to her. Around 6 to 7 hours after the start of all of this they bring in the chemo medicine. It is in a normal looking IV bag . . . except for all of the radioactive warnings and special handling instructions. The nurse hooks it to the IV and sets the IV machine to administer it over 1hr. She came in to check on Lori about every 5 minutes. After the treatment she give Lori lasix. This is followed by another 6 hours of saline drip and some more lasix. Then – its done.
Lori was pretty nervous while waiting for the treatment. We really didn’t know what to expect. The chemo was administered about 8:00 Monday night. She seemed to take it fairly well – except for the fact that she turned a weird color after about 45 minutes. Then the lasix kept her up going to the bathroom for the next few hours.
Tuesday morning I was all excited. As far as I knew when I left the night before Lori had gotten through pretty good. We planned on driving a couple of hours and getting a room for the night. Everything changed as soon as I opened the door to her room. She looked TERRIBLE. She had a killer migraine and had a sour stomach. They gave her some meds for both before I had gotten there. We weren’t leaving anytime soon.
After a few hours of Lori trying to pretend she was feeling well enough to leave they discharged her. We got in the car and headed home. It took about 20 minutes for her to start throwing-up in the car. Fortunately she was prepared with bucket in hand. After about a half hour of this she fell asleep. I woke her up at Macon to see if she wanted to find a room or keep sleeping while I kept driving. She chose the room.
We got her settled in at the Hampton and I left to get a prescription for naseu medicine filled. When I came back she looked a bit better. Just sleeping in the bed was helping. She started feeling better around 8:00 that night.
The next morning she felt better. After a few stops we made it home OK.
We decided that next time we will stay in Atlanta for one more day. This way all we have to do is to go from the hospital to the hotel.rry it has been so long since I posted. It has been quite a month.
Friday, January 21, 2005
Review of Lab Results with Dr Tumlin
If you haven't read the previous post titled "Latest Lab Results" please do. It will tell you what is going on before you read this. This post addresses the treatment required as discussed with Dr. Tumlin over the phone.
Friday, January 21, 2005
Phone Notes - Dr Tumlin, Lori, & Myself - 9:00 a.m.
Dr Tumlin agreed that Lori’s labs were not good. After reviewing Lori’s current meds Dr Tumlin stated that the treatment is obviously not working. She is going to need Cytoxin (cyclophosphamide) treatments. This is a Chemotherapy treatment that is done once a month for six months. The goal is to get the nephritis into remission.
The 1st treatment Lori will be in the hospital for 3 days. Subsequent treatments will be 23hour stays. Dr. Tumlin said we had the option of going to Atlanta for the treatment where he can supervise all aspects of the treatment or we could find someone here in the Tampa area. He did say he knows of a Dr who he used to work with at Emory that he believed is here in Tampa. His name was Dr Steve Feindmen. Lori decided that she would like to have Dr Tumlin do it all. I agreed. Dr Tumlin seemed relieved and happy we were going to stick with him for the treatments.
Dr. Tumlin gave us the name of another Doctor we could call if we have any questions regarding treatment. Dr James Balow. (301) 496-4181. After our phone call I looked him up on the Internet. Dr Balow is the Kidney Disease Section Chief for the National Institute of Diabetes & Digestive & Kidney Diseases of the National Institute of Health. “Dr. Balow's research is focused on studies of the natural history, pathogenesis, and treatment of immunologically mediated glomerular diseases, particularly lupus nephritis and membranous nephropathy.”
http://www.niddk.nih.gov/intram/faculty.asp?People_ID=1497
Dr Tumlin tried to address our concerns as best as possible regarding the side effects involved. He does not feel hair loss will be significant. In fact he stated that others who are in Lori’s condition whose hair is falling out now (like Lori’s is) actually show less loss and even some growth with the Cytoxin. We’ll have to wait and see. The other major concern is feeling sick the day after or that day (especially since we are traveling to & from Atlanta). Dr Tumlin told us of a drug called Kytril. He said it is very expensive but if the insurance company will pay for it we shouldn’t have too much to worry about with sickness as a side effect. Again, after our call I looked up Kytril on our insurance website. It is a drug that is covered if it is “medically necessary”. We have been through this route before with some of Lori’s other meds. I don’t see a big problem getting this approved.
Lori’s 1st treatment will be Jan 31. We are to meet Dr Tumlin in the clinic at 8:00 that morning. We should be done Feb 2nd. I have to set this up with Dr Tumlin's secretary. We will set up the next treatment at that time.
end of notes
As you can see it has been a great week. So far 2005 is not what we had hoped for.
Friday, January 21, 2005
Phone Notes - Dr Tumlin, Lori, & Myself - 9:00 a.m.
Dr Tumlin agreed that Lori’s labs were not good. After reviewing Lori’s current meds Dr Tumlin stated that the treatment is obviously not working. She is going to need Cytoxin (cyclophosphamide) treatments. This is a Chemotherapy treatment that is done once a month for six months. The goal is to get the nephritis into remission.
The 1st treatment Lori will be in the hospital for 3 days. Subsequent treatments will be 23hour stays. Dr. Tumlin said we had the option of going to Atlanta for the treatment where he can supervise all aspects of the treatment or we could find someone here in the Tampa area. He did say he knows of a Dr who he used to work with at Emory that he believed is here in Tampa. His name was Dr Steve Feindmen. Lori decided that she would like to have Dr Tumlin do it all. I agreed. Dr Tumlin seemed relieved and happy we were going to stick with him for the treatments.
Dr. Tumlin gave us the name of another Doctor we could call if we have any questions regarding treatment. Dr James Balow. (301) 496-4181. After our phone call I looked him up on the Internet. Dr Balow is the Kidney Disease Section Chief for the National Institute of Diabetes & Digestive & Kidney Diseases of the National Institute of Health. “Dr. Balow's research is focused on studies of the natural history, pathogenesis, and treatment of immunologically mediated glomerular diseases, particularly lupus nephritis and membranous nephropathy.”
http://www.niddk.nih.gov/intram/faculty.asp?People_ID=1497
Dr Tumlin tried to address our concerns as best as possible regarding the side effects involved. He does not feel hair loss will be significant. In fact he stated that others who are in Lori’s condition whose hair is falling out now (like Lori’s is) actually show less loss and even some growth with the Cytoxin. We’ll have to wait and see. The other major concern is feeling sick the day after or that day (especially since we are traveling to & from Atlanta). Dr Tumlin told us of a drug called Kytril. He said it is very expensive but if the insurance company will pay for it we shouldn’t have too much to worry about with sickness as a side effect. Again, after our call I looked up Kytril on our insurance website. It is a drug that is covered if it is “medically necessary”. We have been through this route before with some of Lori’s other meds. I don’t see a big problem getting this approved.
Lori’s 1st treatment will be Jan 31. We are to meet Dr Tumlin in the clinic at 8:00 that morning. We should be done Feb 2nd. I have to set this up with Dr Tumlin's secretary. We will set up the next treatment at that time.
end of notes
As you can see it has been a great week. So far 2005 is not what we had hoped for.
Latest Lab Results
The latest lab results are in and they are not good. Lot's of out of range values this time. Of the 43 things tested 18 of them are out of range. The worst have to be the ones that deal with the kidneys.
The Protein in her urine has jumped from 4788 in august to 7911. (this is mg / 24hr - it should be <150). Her Creatinine in her blood was high and her Creatinine Clearance in her urine was low. Both are signs of her kidneys shutting down. Her heomcrit was also low - another sign of kidney failure. Her Albumin and was critically low (meaning she is malnurished) and the protein level in her blood was the lowest it has ever been.
Her Cholesterol is up to 240 (should be <200). She is on cholestoral medicine (lipitor). This is due to the Liver over producing to help compensate for the kidneys not working. Her calcium was also low this time . . . not sure why. Also her red blood cell count was low but just out of range as was her hemoglobin.
What do all these mean - bottom line her treatment is not working. We reviewed the results with Dr Tumlin. The notes from that phone call are the next post.
The Protein in her urine has jumped from 4788 in august to 7911. (this is mg / 24hr - it should be <150). Her Creatinine in her blood was high and her Creatinine Clearance in her urine was low. Both are signs of her kidneys shutting down. Her heomcrit was also low - another sign of kidney failure. Her Albumin and was critically low (meaning she is malnurished) and the protein level in her blood was the lowest it has ever been.
Her Cholesterol is up to 240 (should be <200). She is on cholestoral medicine (lipitor). This is due to the Liver over producing to help compensate for the kidneys not working. Her calcium was also low this time . . . not sure why. Also her red blood cell count was low but just out of range as was her hemoglobin.
What do all these mean - bottom line her treatment is not working. We reviewed the results with Dr Tumlin. The notes from that phone call are the next post.
Friday, January 14, 2005
As Expected . . . no more job
After 6 1/2 years of working at the Spa Lori is no longer employed there. Her leave automatically switched from Medical to Personal when her Medical leave was up at the beginning of the month. Today she got the call that they had given her position to someone else. No more Spa Membership Director for Lori. *sad*.
I took her to the Spa to get her stuff. Lots of stuff. It took four of us to carry it out. Lori got to say goodbye to the few people she wanted to. This was a good thing. We knew it was coming but its really sad now that it's here.
It looks like she will be filing for Social Security Disability in the next few weeks. We have Doctors appointments with Rhuemy, Nephrologist, & Primary in the next three weeks. Going to let all of them know and see what they can and/or need to do.
I took her to the Spa to get her stuff. Lots of stuff. It took four of us to carry it out. Lori got to say goodbye to the few people she wanted to. This was a good thing. We knew it was coming but its really sad now that it's here.
It looks like she will be filing for Social Security Disability in the next few weeks. We have Doctors appointments with Rhuemy, Nephrologist, & Primary in the next three weeks. Going to let all of them know and see what they can and/or need to do.
Thursday, January 13, 2005
The Year in Review II
Lori said I should put more than "sucked" for last year. She suggested "really sucked"
Last year was a really bad year. We started the year in the hospital trying to find the cause of Lori's fatigue. What we have 12 months later is a whole bunch of diagnosed syndromes and conditions - but no answer to the fatigue (which is as bad - or worse than it was last year at this time)
Not counting hospital Doctors we saw 12 different Doctors from Miami to Atlanta.
Lori gave around 6 gallons of blood (9 - 10 tubes once a month + hospital ).
Don't forget the half a dozen times we got to see that container in the fridge (no . . it's NOT lemonade)
She worked around 8 full weeks in the whole year. She was on leave for the last third of the year.
She now has 19 pills to take daily (20 on saturday).
And last but not least she has to wear her darth vader mask at bedtime, use a wheelchair ANYTIME we go anywhere that requires even a little bit of walking, and is in the process of retaining her hair as it falls out so she can make a wig to match her color exactly!
2004 added the following conditions and/or syndromes:
Lupus Nephritis (Feb 2004)
Osteopenia (May 2004)
Anti Phospholipid Antibodies (Oct 2004)
Sjögren's Syndrome (Oct 2004)
Reynaud's Phenomenon (Oct 2004)
Sleep Apnea (Dec 2004)
Add to that her existing conditions:
Fibromyalgia (Jan 2003)
Hypertension (July 2000)
Migraines (Jan 2000)
Rheumatiod Arthritis (Jan 1998)
SLE (Lupus) (May 1996)
and you got quite a bit to deal with.
Lets hope 2005 is a better year
Last year was a really bad year. We started the year in the hospital trying to find the cause of Lori's fatigue. What we have 12 months later is a whole bunch of diagnosed syndromes and conditions - but no answer to the fatigue (which is as bad - or worse than it was last year at this time)
Not counting hospital Doctors we saw 12 different Doctors from Miami to Atlanta.
Lori gave around 6 gallons of blood (9 - 10 tubes once a month + hospital ).
Don't forget the half a dozen times we got to see that container in the fridge (no . . it's NOT lemonade)
She worked around 8 full weeks in the whole year. She was on leave for the last third of the year.
She now has 19 pills to take daily (20 on saturday).
And last but not least she has to wear her darth vader mask at bedtime, use a wheelchair ANYTIME we go anywhere that requires even a little bit of walking, and is in the process of retaining her hair as it falls out so she can make a wig to match her color exactly!
2004 added the following conditions and/or syndromes:
Lupus Nephritis (Feb 2004)
Osteopenia (May 2004)
Anti Phospholipid Antibodies (Oct 2004)
Sjögren's Syndrome (Oct 2004)
Reynaud's Phenomenon (Oct 2004)
Sleep Apnea (Dec 2004)
Add to that her existing conditions:
Fibromyalgia (Jan 2003)
Hypertension (July 2000)
Migraines (Jan 2000)
Rheumatiod Arthritis (Jan 1998)
SLE (Lupus) (May 1996)
and you got quite a bit to deal with.
Lets hope 2005 is a better year
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