Wednesday, August 26, 2009
Home!!!
I am home and the procedure went well. I have most of the results, wont get the biopsies back until friday. I have enlarged vocal cords, what looks like to be a raging yeast infection in my esophagus, and significant gastritis. The good news is that my fundoplication is intact and tight, the not so good news is the gastritis and the yeast. In theory I shouldnt have any gastritis going on since I am on some pretty powerful antacids three times a day, so I am still a puzzle wrapped in a mystery covered in an engima.
Tuesday, August 25, 2009
Frustration and Emotions
I am having my EGD tomorrow and to even go under with conscious sedation I need a bolus dose of steroids either through the IV or IM, in a muscle. I call GI to make sure that the medication is added to the orders well they want further instruction/orders from my endocrinologist before adding it to the orders. I thought for about 15 minutes about just doing it at home IM, but since my level of blood thinness is not the greatest right now in consistency (I am not supposed to give it if the number is greater than or equal to 3.5) So I prayed before dialing the number for the endocrinologist since their office is ridiculously slow and hard to get ahold of the nurse. I actually got the nurse and got a phone call back that she had spoken with the right person, Danielle, and had faxed a copy of the order to the doctors office.
Emotions, well this month is just a hard month in general. My dad died this month and also his birthday would be this month. He would have been 51. I cant believe that it is now 7 years. Somedays it feels like it has been forever and somedays just yesterday
I am NPO after midnight just to try and make sure that my stomach is actually empty when I go under, the procedure time is 330 and we have to be there at 230
Emotions, well this month is just a hard month in general. My dad died this month and also his birthday would be this month. He would have been 51. I cant believe that it is now 7 years. Somedays it feels like it has been forever and somedays just yesterday
I am NPO after midnight just to try and make sure that my stomach is actually empty when I go under, the procedure time is 330 and we have to be there at 230
Sunday, August 23, 2009
August 23 2009
August 23, 2009
Oh where to start, the medical adventures have continued and have gotten to the point that I am just plain tired of dealing with it and spending so much time making sure that nothing goes wrong or gets missed.
I have been throwing up and having problems tolerating my medications. It has even gotten to the point of me having to pull over on the side of the road to puke while I am driving or at least trying to drive.
My INR, level that shows how thin my blood is, has not stayed stable and I am getting to the point that I am just sick of it all. Right now it is 1.8 and it is supposed to be between 2 -3.
G.I. well that is the huge headache for the moment. My whole GI tract doesn’t work right and the way it works isn’t predictable going from one extreme to the other and refluxing through my fundoplication and with 3 very strong acid reducing medications.
On Wednesday the 26th I will be having an EGD, scope from the top of the GI tract to the beginning of the small intestines taking pictures and biopsies, done. The major concerns are my dysmotility and having residual junk in my system blocking. The sedation should go fine since it is my normal medications for conscious sedation, Demerol and versed, but getting the right dose of the drugs in my system since I have such a high tolerance for pain medications so there is no telling how much of the drugs that I will actually need to not be awake and aware of what is going on.
On the 25th I go back to the dentist and get my new and improved teeth guard for my TMJ. Right now I have a hard acrylic splint that doesn’t fit right and has chips in it. I am hoping that I will not have to pay anything because I just don’t have the money for it
Pain management appointment should be sometime this week or first thing of next week. I have got to come up with the money for my account balance I am hoping that they will let me just pay half of the amount and increase the next few payments by a small amount to get me back on track for getting that bill paid off. I have a great desire to stay on their good side since they are the doctor that has gotten me to the point that I am most comfortable and have more functioning tolerable pain level times
I have got to reschedule the appointments that I missed last week due to puking my toenails up, have got three or four of them, cardiology, podiatry, neurology, and a lab draw, and calling GI to get IV solucortef ordered as one of my pre meds for Wednesday. Why do I need to have the extra steroids, adrenal insufficiency due to my panhypopituitarism… get too low on that and you get problems with fluid balance, energy, heartrate and blood pressure all not good things to happen.
Tomorrow we will start the switch over from Coumadin to Lovenox to maintain my coverage for blood thinners to prevent more clots but the lovenox has less risk for bleeding during the procedure when compared to the Coumadin. I am not looking forward to having to use the lovenox again because the last time we did this I ended up with HUGE bruises that took 6 weeks to go away.
I will be starting back to work a couple days a week on Monday just for a few hours but it will be so nice to actually be able to use automatic online bill pay to try and get some of my medical bills and student loans out of default. That is another project of mine trying to figure out who to pay and in what order, that is what I will be doing for the majority of my more functional hours for the next 2 weeks.
I have one more major medication pick up this week, shooting for Wednesday for the pickup day since we will already be at the hospital I am just hoping that we will get out of there under 200 bucks
Emotionally I am just totally drained, and getting the information that Social Security needs for my application has really gotten to me, the massive amount of medications, doctors, hospitals, procedures, lab draws and other tests, and the medication schedule that I follow
I have also got to get ahold of my urologist’s office to get an increased bladder spasm medication dose, it feels the best every 12 hours but my current prescription is only for once a day.
Podiatry I need to have the follow up visit for my ingrown toenail on my right side that is still oozing and icky looking and have him do the same thing on the other foot while I am on the lovenox coverage to try and minimize the bleeding when it is done.
Prayer Requests
1. Protection from the formation of more clots when off the Coumadin
2. Medication used for sedation for the procedure on Wednesday would work well
3. Patience and peace and tolerance for being NPO for atleast 14 hours
4. That there will be clear answers as to the next step in treating my reflux
5. I get all of the information that Social Security wants so I can send that off on Monday.
6. That the boys that I take care of will behave for me, I haven’t taken care of them since the middle of June and one of them the youngest has difficulty dealing with change
7. Patience for my mom when she has to take care of me on Wednesday, sometimes I am not the nicest person after sedation
It is after 2 in the morning so I better sign off.
Melinda
Oh where to start, the medical adventures have continued and have gotten to the point that I am just plain tired of dealing with it and spending so much time making sure that nothing goes wrong or gets missed.
I have been throwing up and having problems tolerating my medications. It has even gotten to the point of me having to pull over on the side of the road to puke while I am driving or at least trying to drive.
My INR, level that shows how thin my blood is, has not stayed stable and I am getting to the point that I am just sick of it all. Right now it is 1.8 and it is supposed to be between 2 -3.
G.I. well that is the huge headache for the moment. My whole GI tract doesn’t work right and the way it works isn’t predictable going from one extreme to the other and refluxing through my fundoplication and with 3 very strong acid reducing medications.
On Wednesday the 26th I will be having an EGD, scope from the top of the GI tract to the beginning of the small intestines taking pictures and biopsies, done. The major concerns are my dysmotility and having residual junk in my system blocking. The sedation should go fine since it is my normal medications for conscious sedation, Demerol and versed, but getting the right dose of the drugs in my system since I have such a high tolerance for pain medications so there is no telling how much of the drugs that I will actually need to not be awake and aware of what is going on.
On the 25th I go back to the dentist and get my new and improved teeth guard for my TMJ. Right now I have a hard acrylic splint that doesn’t fit right and has chips in it. I am hoping that I will not have to pay anything because I just don’t have the money for it
Pain management appointment should be sometime this week or first thing of next week. I have got to come up with the money for my account balance I am hoping that they will let me just pay half of the amount and increase the next few payments by a small amount to get me back on track for getting that bill paid off. I have a great desire to stay on their good side since they are the doctor that has gotten me to the point that I am most comfortable and have more functioning tolerable pain level times
I have got to reschedule the appointments that I missed last week due to puking my toenails up, have got three or four of them, cardiology, podiatry, neurology, and a lab draw, and calling GI to get IV solucortef ordered as one of my pre meds for Wednesday. Why do I need to have the extra steroids, adrenal insufficiency due to my panhypopituitarism… get too low on that and you get problems with fluid balance, energy, heartrate and blood pressure all not good things to happen.
Tomorrow we will start the switch over from Coumadin to Lovenox to maintain my coverage for blood thinners to prevent more clots but the lovenox has less risk for bleeding during the procedure when compared to the Coumadin. I am not looking forward to having to use the lovenox again because the last time we did this I ended up with HUGE bruises that took 6 weeks to go away.
I will be starting back to work a couple days a week on Monday just for a few hours but it will be so nice to actually be able to use automatic online bill pay to try and get some of my medical bills and student loans out of default. That is another project of mine trying to figure out who to pay and in what order, that is what I will be doing for the majority of my more functional hours for the next 2 weeks.
I have one more major medication pick up this week, shooting for Wednesday for the pickup day since we will already be at the hospital I am just hoping that we will get out of there under 200 bucks
Emotionally I am just totally drained, and getting the information that Social Security needs for my application has really gotten to me, the massive amount of medications, doctors, hospitals, procedures, lab draws and other tests, and the medication schedule that I follow
I have also got to get ahold of my urologist’s office to get an increased bladder spasm medication dose, it feels the best every 12 hours but my current prescription is only for once a day.
Podiatry I need to have the follow up visit for my ingrown toenail on my right side that is still oozing and icky looking and have him do the same thing on the other foot while I am on the lovenox coverage to try and minimize the bleeding when it is done.
Prayer Requests
1. Protection from the formation of more clots when off the Coumadin
2. Medication used for sedation for the procedure on Wednesday would work well
3. Patience and peace and tolerance for being NPO for atleast 14 hours
4. That there will be clear answers as to the next step in treating my reflux
5. I get all of the information that Social Security wants so I can send that off on Monday.
6. That the boys that I take care of will behave for me, I haven’t taken care of them since the middle of June and one of them the youngest has difficulty dealing with change
7. Patience for my mom when she has to take care of me on Wednesday, sometimes I am not the nicest person after sedation
It is after 2 in the morning so I better sign off.
Melinda
Friday, July 10, 2009
My Magic Number
The magic number for today is 2.7, which is in the therapuetic range of 2-3 but I have a feeling that it wont stay the same, in range, all the way until wednesday when I get rechecked.
I went to the gym and was going to work out, I am significantly overweight and need to work on that desprately for health and self esteem issues. My pulse rate was too high to be cleared to work out. I will try again tomorrow my target time and target speed are both crazy slow but that is where I need to start
Migraines shut this day down again. I am getting tired of even having the ability to type the dang word.
It was anywhere between 102 to 108 today for the high no wonder it is toasty.
Melinda
I went to the gym and was going to work out, I am significantly overweight and need to work on that desprately for health and self esteem issues. My pulse rate was too high to be cleared to work out. I will try again tomorrow my target time and target speed are both crazy slow but that is where I need to start
Migraines shut this day down again. I am getting tired of even having the ability to type the dang word.
It was anywhere between 102 to 108 today for the high no wonder it is toasty.
Melinda
Thursday, July 9, 2009
Boy has life been busy
When I last posted I was still in the hospital as a patient trying to get the newest development in my healthcare journey under control....the multiple (minimum 4 2 on in each lung) bilateral pulmonary embolisms or is it emboli?
Life has yet to slow down for me family or me for that matter
Lets start with my bubba, who is stationed in Germany with the Army. He had a recheck for his knee and his ankle. The left knee and the right ankle. His ankle is healing okay he broke a bone in it when he was home in the states on leave best we can guess. His knee is another matter it is not healing appropriately so they are going to have to try a meniscus transplant in Germany and he will recover over there since he has friends both military and non who can help to take care of him and make sure he does not do too much.
Mom- she spent a couple of nights in the hospital with an aggrevation of her inner ear edema due to the stress of life in general and me and my brother. It hit her at work when she was down in the ER where she was floated to. She got real dizzy and was sitting down at the desk doing nurses notes and she had to grab on to the desk to stop the sensation that she was going to fall over. There was nausea and vomiting and fears of Meiners Disease or syndrome but since she doesn't have the hearing loss her diagnosis is still the less serious inner ear edema which can be treated with 2 simple medications.
Me- My INR still hasn't held itself in the therapuetic range for what I am being treated for. Therapuetic is 2-3, and my latest one is 3.3 that is what it was on monday I get it checked again tomorrow and it is going to be on the low end of acceptable to out of range just based on symptoms and side effects that I get with the coumadin being out of range. Migraines are out of control in both frequency and duration and depth of pain. We increased the one preventative that is worth the risk of the side effects and the sedating effects and have to give it a minimum of 2 weeks to get therapuetic. therapuetic seems to be a popular word in my life lately. Other problems are high heart rate, both at rest and activity, shortness of breath, and chest pain.
So if these areas could be thought of and lifted up to the God of Ages who can answer all our requests I would appreciate it.
Melinda
Life has yet to slow down for me family or me for that matter
Lets start with my bubba, who is stationed in Germany with the Army. He had a recheck for his knee and his ankle. The left knee and the right ankle. His ankle is healing okay he broke a bone in it when he was home in the states on leave best we can guess. His knee is another matter it is not healing appropriately so they are going to have to try a meniscus transplant in Germany and he will recover over there since he has friends both military and non who can help to take care of him and make sure he does not do too much.
Mom- she spent a couple of nights in the hospital with an aggrevation of her inner ear edema due to the stress of life in general and me and my brother. It hit her at work when she was down in the ER where she was floated to. She got real dizzy and was sitting down at the desk doing nurses notes and she had to grab on to the desk to stop the sensation that she was going to fall over. There was nausea and vomiting and fears of Meiners Disease or syndrome but since she doesn't have the hearing loss her diagnosis is still the less serious inner ear edema which can be treated with 2 simple medications.
Me- My INR still hasn't held itself in the therapuetic range for what I am being treated for. Therapuetic is 2-3, and my latest one is 3.3 that is what it was on monday I get it checked again tomorrow and it is going to be on the low end of acceptable to out of range just based on symptoms and side effects that I get with the coumadin being out of range. Migraines are out of control in both frequency and duration and depth of pain. We increased the one preventative that is worth the risk of the side effects and the sedating effects and have to give it a minimum of 2 weeks to get therapuetic. therapuetic seems to be a popular word in my life lately. Other problems are high heart rate, both at rest and activity, shortness of breath, and chest pain.
So if these areas could be thought of and lifted up to the God of Ages who can answer all our requests I would appreciate it.
Melinda
Sunday, June 14, 2009
Tomorrow is the Day
Tomorrow is the day for me becoming even more of a bionic woman, with the filter and the fact that I have a shunt to drain the fluid off my brain. I don't have a time for the procedure yet, will probably not get it till tomorrow sometime. I am not even sure if I will be NPO after midnight tonight because the doctor assured me that I will get some medication to help me relax and get to the point that I am more comfortable.
Right now I am waiting for my care partner to get finished with her vitals and come back because I would like to go for a little stroll and need some help to do so. Also we are going to get a good popscile or two out of the staff fridge that my mom hid there since the ones that are in the patient fridge have melted and re-frozen which makes them not taste so hot.
And since my fluid intake is down and I love popsciles that is an easy way for me to get more fluids in and avoid being hooked up to an IV in addition to telemetry which isn't a portable device it is like an IV pump with a bunch more cords and oxygen to keep me from de-satting which I do often because my lungs aint working the greatest due to the blood clots.
thanks for the prayers and good thoughts, brain surgery doesnt really freak me out but this is, I am trying to rest in the knowledge that God is in control and will walk me through this latest trial but sheessh I sometimes wish that God didnt think so highly of me....you know the God won't give you more than you can handle.
Mindy
Right now I am waiting for my care partner to get finished with her vitals and come back because I would like to go for a little stroll and need some help to do so. Also we are going to get a good popscile or two out of the staff fridge that my mom hid there since the ones that are in the patient fridge have melted and re-frozen which makes them not taste so hot.
And since my fluid intake is down and I love popsciles that is an easy way for me to get more fluids in and avoid being hooked up to an IV in addition to telemetry which isn't a portable device it is like an IV pump with a bunch more cords and oxygen to keep me from de-satting which I do often because my lungs aint working the greatest due to the blood clots.
thanks for the prayers and good thoughts, brain surgery doesnt really freak me out but this is, I am trying to rest in the knowledge that God is in control and will walk me through this latest trial but sheessh I sometimes wish that God didnt think so highly of me....you know the God won't give you more than you can handle.
Mindy
Saturday, June 13, 2009
Change of Plans Sorta
There is a slight change of plans I wont be going home on Monday, they will be placeing a special kind of filter to try and be on the safe side to block the ability of blood clots to get to my lungs. And to be able to place the filter they had to stop the coumadin and will restart it afterward the placement of the filter.
I am not that thrilled that I will be cut on the side of my neck and be awake throughout the procedure at least according to how the procedure was explained to me because it doesnt sound that comfortable to put it simply.
again sorry it is so short it is hard to type with my glow finger and IV spot.
I am not that thrilled that I will be cut on the side of my neck and be awake throughout the procedure at least according to how the procedure was explained to me because it doesnt sound that comfortable to put it simply.
again sorry it is so short it is hard to type with my glow finger and IV spot.
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