Late. Time for bed. Starting to feel much better though... thank God!
These medication changes have NOT been easy!
May I get some rest...
Monday, August 18, 2008
Saturday, August 16, 2008
rough week
Been a couple of rough weeks with the medicine changes. Feling fatigued and nauseous most of the time. Plus,It's WaLK FOR PKD season, so things are getting hectic.
Have a check in to verify my drug levels and report BP's to Cleveland Cinic tonight,so we will get a good check then.
Until then, just relax.
Have a check in to verify my drug levels and report BP's to Cleveland Cinic tonight,so we will get a good check then.
Until then, just relax.
Monday, July 28, 2008
124/85
BP looking much better than last night thank God. Yesterday I was feeling lousy and BP was running 149/106. Rather high. So, I just relaxed and drank water and things came down. Looking good and feeling better tonight.
Looking forward to Friday... I go back to Cleveland Clinic and stop the beta blocker. Start the clinical trial drugs. Anxious to get this show started!
Looking forward to Friday... I go back to Cleveland Clinic and stop the beta blocker. Start the clinical trial drugs. Anxious to get this show started!
Tuesday, July 22, 2008
Monday, July 21, 2008
121/70
I feel just as those numbers say I should. Low BP... feeling great. Relaxed. No anxiety. Just kind of hapy to be in the middle of summer. Feel swell one might say.
Cleveland Clinic reviewed my recent labs and decided to start me on Lipitor. High cholesterol / Triglycerides, the whole cholesterol she-bang. Only 10 mg... and just another pill. One of many in my day... but one more sucks. Going to watch some diet things as well... low cholesterol diet of sorts. Remembering the motto: Quality not Quantity.
Cleveland Clinic reviewed my recent labs and decided to start me on Lipitor. High cholesterol / Triglycerides, the whole cholesterol she-bang. Only 10 mg... and just another pill. One of many in my day... but one more sucks. Going to watch some diet things as well... low cholesterol diet of sorts. Remembering the motto: Quality not Quantity.
Saturday, July 12, 2008
129/81
Lazy Saturday. Have dedicated toay to not leaving the house and getting as much rest as possible. Realizing that there are several major stressers in my life currently, I also realize that I will be better if I rest as much as I work. Saturday's always a good one to let go and unwind.
Romantic interest: going to go to the fire lights by the river and discuss the confusion there.
Family interest: out to the best friend's house in pataskala later tonight for bf movie night.
Domestic interest: trying to start the deep cleaning needed to get the packing and detaching from this house started. Will continue to work on that slowly.
Looking at the clinical trial: reviewing this week's readings it appears that 400 mg lobetolol may not be enough. 140/90 being the BP reading that corresponds with needing to call the research nurse. I am staying lower but it is g=higher than I was reading with the ACE-inhibitor. So, we will have to send them the data and see what they say. Either this is fine for the remainder of the drug washout period or they adjust the mg's up a few. Will keep it posted.
Emotionally: irritability has reduced dramatically. Rest probably helps that as well.
Romantic interest: going to go to the fire lights by the river and discuss the confusion there.
Family interest: out to the best friend's house in pataskala later tonight for bf movie night.
Domestic interest: trying to start the deep cleaning needed to get the packing and detaching from this house started. Will continue to work on that slowly.
Looking at the clinical trial: reviewing this week's readings it appears that 400 mg lobetolol may not be enough. 140/90 being the BP reading that corresponds with needing to call the research nurse. I am staying lower but it is g=higher than I was reading with the ACE-inhibitor. So, we will have to send them the data and see what they say. Either this is fine for the remainder of the drug washout period or they adjust the mg's up a few. Will keep it posted.
Emotionally: irritability has reduced dramatically. Rest probably helps that as well.
Friday, July 11, 2008
124/76
Been a long and interesting day. Things winding down although oddly marked with kidney disease. Good friend of mine's 21 year old son needed a transplant. Today, he received the transplanted kidney from his brother and they both are doing well. Whew! Wasn't worried but nice to confirm, nonetheless.
First week of blogging under the HALT-PKD study. Day 3 or 4 in drug washout period. Things are going fine. Small BP disturbances but mostly just smooth sailing. Irritability is the most noticeable side effect. Trying to keep that to myself... I hope.
Friend who just recevied the bad news from Pitt is being kind of absent. I can imagine she may have retreated to her confort zone until she is ready to think and talk about this. I will stay tuned and hope to chat with her soon.
I feel that my BP is on it's way downa bit so I might have to check back in later tonight and see how the numbers are. You'll see it in the title if you need to know...
First week of blogging under the HALT-PKD study. Day 3 or 4 in drug washout period. Things are going fine. Small BP disturbances but mostly just smooth sailing. Irritability is the most noticeable side effect. Trying to keep that to myself... I hope.
Friend who just recevied the bad news from Pitt is being kind of absent. I can imagine she may have retreated to her confort zone until she is ready to think and talk about this. I will stay tuned and hope to chat with her soon.
I feel that my BP is on it's way downa bit so I might have to check back in later tonight and see how the numbers are. You'll see it in the title if you need to know...
Wednesday, July 9, 2008
112/67
Good: 1st day of drug washout phase is being tolerated rather well. Slightly tired and irritable but all is ok. Optimistic
Bad: Friend received biopsy results from Pitt today which indicated moderate to severe transplant rejection..... after some 12 years!!!! Rather upset about that.
Will definitely need to evaluate all of this further later...
Bad: Friend received biopsy results from Pitt today which indicated moderate to severe transplant rejection..... after some 12 years!!!! Rather upset about that.
Will definitely need to evaluate all of this further later...
Tuesday, July 8, 2008
HALT-PKD Day 1
Almost 11 pm. Just got in from a "Renal Journey" with a friend. Live in Columbus, Ohio. Drove her to UPMC in Pittsburgh for a ultrasound and renal biopsy. Then I went to the Cleveland Clinic for my screening visit to enter into the HALT-PKD clinical trials. Then back to pickup my friend in Pittsburgh only to continue on home to Columbus. Whew! Decided in the car that if I am committed to this clinical trial like I know that I am, then I should share my experience so that others may see the personal side of this type of experience.
Hence, "PKD Guinea Pig"!
I will Walk.... until there is a cure.
Hence, "PKD Guinea Pig"!
I will Walk.... until there is a cure.
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