So, let me start by saying I'm loving this chair! I have been all over the place - it is so so nice to have mobility back that does not include pain! A friend and I go up to the student center and have lunch at least once a week. And, now I take my chair to the office. Makes life much easier - I am not exhausted when I leave there or in so much pain I can't think.
Speaking of pain - I saw the orthopaedic doctor last Friday. They did a series of xrays on my hips, pelvis and back. The good news is that my right hip is in great shape! The bad news is that my left hip is in horrible shape! There is no cartilage at all, bone on bone, and that is chipping away or being worn off. He said there is no option but a total hip replacement and there is nothing that will take away the pain in the meantime.
Also, the L4 and L5 vertibrae are out of alignment and severely arthritic - why I can't seem to stand up exactly straight and why, if I could walk much, my back would bother me a great deal. Not much to do for that - just a fact of life at this point.
I am going to see the orthopaedic surgeon for a consult - I'm not sure I can stand the surgery and I'm not sure they do it on someone who still weighs 400 pounds. But, it'll be a starting place and if it's something I have to do after I lose another 100 pounds, I'll have it on the schedule.
Good thing I got the power chair - and the doctor agreed - said I would need it!
Interesting sidenote - there was this huge black spot right near the center of my pelvic bone - Doc said "That's your fibroid tumor - did you know you have a fibroid tumor?" I almost laughed but I didn't! I did manage to tell him that the fibroid had it's very own year - 2009 - and it was not allowed to say or do anything this year!
I didn't weigh at this visit - I've been doing better and have only eat Dominoes once per week the last two weeks!
Tuesday, April 27, 2010
Tuesday, April 13, 2010
Progress Report what - Number 50?
Been a little behind - for one I let my home phone get cut off which zapped my internet. That's back on - just some bumps in the never-ending bumpy road called life. Thank God for the bumps though - they keep me awake! (and you make see that on facebook too)
I saw the GYN surgeon around March 15 or so - she was pleased that things have continued to be good - code for 'yay no bleeding'! Right now we're not going to do anything but wait and see and if I don't go thru menopause in the next year or so, we may do the hysterectomy.
Had an INR - holding steady at 2.8. I weighed too - down to 403 - 198 pounds lost!! Man, will I ever get below that 400 pound mark?
Saw the cardiologist this week - he said he was very happy with the progress I've made. I had gained 9 lbs since the GYN visit - thanks to Dominos Buffalo Chicken Sandwich!! I am retaining a great deal of fluid again - I guess that will never be over. Blood pressure was 124/82 can't get much better than that.
We discussed the weight loss surgery which I still don't want to have and Mitzi was with me. She commented that I'd done so good on my own - but he said that I need to get down to 200 - he don't see me any smaller than that - and that I could jumpstart the process with surgery instead of spending another two years getting it off.
The compromise - we are at the edge of summer which was great for me last year. I've signed up for the CSA Farmer Box again - and if I can repeat what I did last summer I can get 50-60 pounds off by the time I go back to the cardiologist in August! He agreed and we'll go from there! I weighed 340 pounds when I married Ronnie Martin - I'd love to be there by the end of summer.
FYI - I got my powerchair! It is great - wish I had done this years ago - I have life and freedom back - I've been all over the campus, to a concert, to church several times, just everywhere. In process of getting approved for AccessRide and at that point, the city is my domain again! Watch out for the white haired woman on the candy apple red Jazzy!!
I really got to do something with this hair!
I saw the GYN surgeon around March 15 or so - she was pleased that things have continued to be good - code for 'yay no bleeding'! Right now we're not going to do anything but wait and see and if I don't go thru menopause in the next year or so, we may do the hysterectomy.
Had an INR - holding steady at 2.8. I weighed too - down to 403 - 198 pounds lost!! Man, will I ever get below that 400 pound mark?
Saw the cardiologist this week - he said he was very happy with the progress I've made. I had gained 9 lbs since the GYN visit - thanks to Dominos Buffalo Chicken Sandwich!! I am retaining a great deal of fluid again - I guess that will never be over. Blood pressure was 124/82 can't get much better than that.
We discussed the weight loss surgery which I still don't want to have and Mitzi was with me. She commented that I'd done so good on my own - but he said that I need to get down to 200 - he don't see me any smaller than that - and that I could jumpstart the process with surgery instead of spending another two years getting it off.
The compromise - we are at the edge of summer which was great for me last year. I've signed up for the CSA Farmer Box again - and if I can repeat what I did last summer I can get 50-60 pounds off by the time I go back to the cardiologist in August! He agreed and we'll go from there! I weighed 340 pounds when I married Ronnie Martin - I'd love to be there by the end of summer.
FYI - I got my powerchair! It is great - wish I had done this years ago - I have life and freedom back - I've been all over the campus, to a concert, to church several times, just everywhere. In process of getting approved for AccessRide and at that point, the city is my domain again! Watch out for the white haired woman on the candy apple red Jazzy!!
I really got to do something with this hair!
Saturday, March 6, 2010
True Age
Have you seen Dr. Oz on Oprah or his own show talking about your true age? That's the age your body thinks it is or the age at which your body is performing.
Last year around this time when I was in such bad shape I honestly didn't know if I was going to live to see summer, I took the 'True Age' test. It wasn't so good - the test told me my body was 70!!! Now, I was feeling about 170 and like I'd already been dead for a year or two so I wasn't surprised, but I was hurt. It really did hurt my feelings to be in that bad of shape.
So, after the year I've had, three surgeries, 4 hospitalizations and losing 196 pounds, I decided or remembered actually to take the test again. This time my true age was 58.6 years!!! Hallelujah!
That is still about 9 years older than I am right now - but that is 12 years improvement in one calendar year! I'll take it!
Suggestions for me from the test were to take less meds (don't really see that one happening), increasing my consumption of Omega 3's and get more exercise (which I desparately need to do).
If I stay on the path I've been on - maybe my true age will match my chronological age sometime after I turn 50 on June 1!! Woo hoo!
Last year around this time when I was in such bad shape I honestly didn't know if I was going to live to see summer, I took the 'True Age' test. It wasn't so good - the test told me my body was 70!!! Now, I was feeling about 170 and like I'd already been dead for a year or two so I wasn't surprised, but I was hurt. It really did hurt my feelings to be in that bad of shape.
So, after the year I've had, three surgeries, 4 hospitalizations and losing 196 pounds, I decided or remembered actually to take the test again. This time my true age was 58.6 years!!! Hallelujah!
That is still about 9 years older than I am right now - but that is 12 years improvement in one calendar year! I'll take it!
Suggestions for me from the test were to take less meds (don't really see that one happening), increasing my consumption of Omega 3's and get more exercise (which I desparately need to do).
If I stay on the path I've been on - maybe my true age will match my chronological age sometime after I turn 50 on June 1!! Woo hoo!
Monday, February 22, 2010
Exam Results
So the mobility exam went well - I was a bit apprehensive since I didn't know what to expect. It was not too much to it really - I can't walk without assistance from someone or something - not much else to know.
I did weigh in - I was at 406. Now, I was glad not to be above 407. I can see in my legs and abdomen that there is excess fluid back on me - so I have continued to lose fat since my weight had not increased. Goal between now and cardiology visit in April - get the fluid off and maybe just maybe, hit 350 by my birthday.
My sweet little doctor told me he was leaving! He's not leaving Vanderbilt but going to be a fellow in the pulmonary institute. I told him no offense but I hoped not to see him and he agreed, as a patient, he would not want to see me since most of his time will be in ICU. He is going to see me one more time before he leaves in June and he said he would miss me! He is a real sweetheart and I will miss him too!
He continued to say something about my weight loss and I explained it to him this way. There are days you never forget, the days my babies were born, the days my parents passed away, and Feb 3, 2009 whcn I topped the scale at 601 pounds. I told him that the milestones before that should have jolted me, but they didn't. I will never forget that day and the fact that I left there severly determined to change my fate. I told him I had been sure I would have died shortly and he agreed saying I was headed for something very bad before things changed.
I am just glad I got a chance to do something before it was too late! I will be satisfied to get down to somewhere between 200 and 225 pounds - about the size I was at high school graduation and in a size 18 clothes which is so much easier to buy now than 30 years ago!
OK - next update after the INR bloodwork next week!
I did weigh in - I was at 406. Now, I was glad not to be above 407. I can see in my legs and abdomen that there is excess fluid back on me - so I have continued to lose fat since my weight had not increased. Goal between now and cardiology visit in April - get the fluid off and maybe just maybe, hit 350 by my birthday.
My sweet little doctor told me he was leaving! He's not leaving Vanderbilt but going to be a fellow in the pulmonary institute. I told him no offense but I hoped not to see him and he agreed, as a patient, he would not want to see me since most of his time will be in ICU. He is going to see me one more time before he leaves in June and he said he would miss me! He is a real sweetheart and I will miss him too!
He continued to say something about my weight loss and I explained it to him this way. There are days you never forget, the days my babies were born, the days my parents passed away, and Feb 3, 2009 whcn I topped the scale at 601 pounds. I told him that the milestones before that should have jolted me, but they didn't. I will never forget that day and the fact that I left there severly determined to change my fate. I told him I had been sure I would have died shortly and he agreed saying I was headed for something very bad before things changed.
I am just glad I got a chance to do something before it was too late! I will be satisfied to get down to somewhere between 200 and 225 pounds - about the size I was at high school graduation and in a size 18 clothes which is so much easier to buy now than 30 years ago!
OK - next update after the INR bloodwork next week!
Sunday, February 14, 2010
Tuesday - Mobility Exam
This Tuesday I'm seeing Dr. Kropski for a mobility exam. Failure of this exam is the success - if I can't move around freely - and I've not done that in years - I can qualify for a mtorized chair. That is quite exciting to me as it will reopen parts of the world I've been closed off to for awhile.
I haven't been inside a mall in about 6 years! I rarely go to movies because the wheelchair was so cumbersome. I can't wait to go to the mall!!
I still haven't bought any new clothes - I am waiting for the shopping trip in my new chair!
More after Tuesday!
I haven't been inside a mall in about 6 years! I rarely go to movies because the wheelchair was so cumbersome. I can't wait to go to the mall!!
I still haven't bought any new clothes - I am waiting for the shopping trip in my new chair!
More after Tuesday!
Sunday, January 31, 2010
Protein S Deficiency
This is a nasty little booger to deal with believe me. But, the good thing is that as it has become more diagnosed, it is being more understood.
The first time we heard of this diagnosis was after my Uncle Harry developed a blood clot in his leg after nasal surgery. At that point, three of his five older brothers were dead from heart attacks, so his doctor set out to see what was going on. My mom was still living at that point, and she signed release papers so Harry's doctor could review my dad's file. Ultimately, the diagnosis of Protein S Deficiency came down the pike.
My next annual physical was coming up so I brought it up to my PCP. He did some quick research since he knew nothing about it and advised I would need to see a blood specialist for testing and diagnosis. Later that week his nurse called me, having already made an appointment with an oncologist for me. She said that my platelet count was low and since I needed to have the other testing done, Dr. Graham was going on and referring me to TN Oncology.
Now, here I am going "oncologist?" That could only mean one thing to me - of which I was too scared to think. I went to the public library that very day and looked thru a book about cancer published by the American Cancer Society. I will never forget how weak my knees went when I read that leukemia is usually diagnosed after an inital blood test shows a low platelet count which dictates further testing.
My babies were 7 and 9 at the time - I thought I was going to die - literally. I didn't say anything to anyone but I got my butt into the appointment. I spent a least an hour with the doctor that day - she was good at explaining what was known at the time. AND, my platelet count was low because my platelets had clumped! Whew, what a relief! They had clumped because of the Protein S problem. There was no cancer at all!
You are born with all the Protein S your body should ever need. You don't produce it and at this point, it is not synthetically replaceable, so, in our bodies (it is a hereditary condition) somewhere after puberty starts, our bodies destroy the Protein S and sometimes Protein C that we have. Protein S works in your bloodstream as a natural algae eater, if you will. It keeps the insides of your blood vessels cleaned up - kinda like the roto-rooter that nature provided. But, if you've lost most of your Protein S there is plaque build up in arteries and this is not related to cholesterol at all. Couple the clumpy platelets with narrowed blood vessels and you have a recipe for a blood clot. NOTE: When my dad died, his body had vascular breakdown completely through out his system - but his cholesterol was less than 160. Even when I weighed 601 pounds, my cholesterol was 161. Doesn't make sense does it?
There are some things a person with Protein S Deficiency should never do - like take birth control pills. I had done that in the early 80's, before the first blood clots in my left leg, and had to discontinue them. Surgeries should be accompanied with anti-coagulation before and after, hormone replacement therapy is never an option, even dental work needs to be discussed between dentist and PCP.
Diagnosing Protein S Deficiency does require specialized labs that need to be ordered and read by hematologists. It's not something your family doctor will be able to diagnose nor treat. I was positive and my sister Amy was tested too - she is deficient. That has probably been the root of her miscarriages.
The kid's pediatrician was aware of this possibility so Renee was tested once at 14 - everything ok at that point. When tested again at 19, she was a 'low normal'. That bloodwork needs to be repeated this year. At this point, Lynn hasn't been tested. Neither have Mike or Larry - something that seems to run with the men in the family. My cousin Mylinda has been tested and is deficient, her brother and all our male cousins refuse to be tested.
Now that I also have an irregular heartbeat, anti-coagulation full time is necessary. At this point, I am on a monthly blood check for my INR - or Pro-Time - clotting time - check. I am to stay between 2.0 and 3.0 - and usually do this with 5 mg of Coumadin 6 nights a week, 2.5 mg on Friday nights only.
Lots of things can affect clotting - for instance - I am not to drink green tea and limit the green leafy veggies I eat. I love turnip greens, eating a big bait of them will definitely thicken my blood because of the Vitamin K in them. ALso, sickness, colds, vomiting, diarrhea - any of these can change your count and may require a weekly check of the INR. Antibiotics - well they bring their own special brands of hell - and you'll be getting blood drawn once a week for a month or two to recover and maintain after them.
Alcohol plays a whole other part - I don't drink anything at all now because of the meds I take. My blood is thin enough and alcohol will thin your blood even more - so it could get very dangerous. Your blood can get so thin, you will begin to seep blood thru your skin pores. That is a crisis and would require a 911 call if that ever happened.
For the persons who are Protein S Deficient, it is critical that they wear some kind of medical alert ID - and that workplace and family members know medical treatment, etc. in case of an emergency where you are rendered incapable of speaking.
But, knowledge is power. All of these things I know and they've just become part of my regular routine - I don't even really think about them.
The first time we heard of this diagnosis was after my Uncle Harry developed a blood clot in his leg after nasal surgery. At that point, three of his five older brothers were dead from heart attacks, so his doctor set out to see what was going on. My mom was still living at that point, and she signed release papers so Harry's doctor could review my dad's file. Ultimately, the diagnosis of Protein S Deficiency came down the pike.
My next annual physical was coming up so I brought it up to my PCP. He did some quick research since he knew nothing about it and advised I would need to see a blood specialist for testing and diagnosis. Later that week his nurse called me, having already made an appointment with an oncologist for me. She said that my platelet count was low and since I needed to have the other testing done, Dr. Graham was going on and referring me to TN Oncology.
Now, here I am going "oncologist?" That could only mean one thing to me - of which I was too scared to think. I went to the public library that very day and looked thru a book about cancer published by the American Cancer Society. I will never forget how weak my knees went when I read that leukemia is usually diagnosed after an inital blood test shows a low platelet count which dictates further testing.
My babies were 7 and 9 at the time - I thought I was going to die - literally. I didn't say anything to anyone but I got my butt into the appointment. I spent a least an hour with the doctor that day - she was good at explaining what was known at the time. AND, my platelet count was low because my platelets had clumped! Whew, what a relief! They had clumped because of the Protein S problem. There was no cancer at all!
You are born with all the Protein S your body should ever need. You don't produce it and at this point, it is not synthetically replaceable, so, in our bodies (it is a hereditary condition) somewhere after puberty starts, our bodies destroy the Protein S and sometimes Protein C that we have. Protein S works in your bloodstream as a natural algae eater, if you will. It keeps the insides of your blood vessels cleaned up - kinda like the roto-rooter that nature provided. But, if you've lost most of your Protein S there is plaque build up in arteries and this is not related to cholesterol at all. Couple the clumpy platelets with narrowed blood vessels and you have a recipe for a blood clot. NOTE: When my dad died, his body had vascular breakdown completely through out his system - but his cholesterol was less than 160. Even when I weighed 601 pounds, my cholesterol was 161. Doesn't make sense does it?
There are some things a person with Protein S Deficiency should never do - like take birth control pills. I had done that in the early 80's, before the first blood clots in my left leg, and had to discontinue them. Surgeries should be accompanied with anti-coagulation before and after, hormone replacement therapy is never an option, even dental work needs to be discussed between dentist and PCP.
Diagnosing Protein S Deficiency does require specialized labs that need to be ordered and read by hematologists. It's not something your family doctor will be able to diagnose nor treat. I was positive and my sister Amy was tested too - she is deficient. That has probably been the root of her miscarriages.
The kid's pediatrician was aware of this possibility so Renee was tested once at 14 - everything ok at that point. When tested again at 19, she was a 'low normal'. That bloodwork needs to be repeated this year. At this point, Lynn hasn't been tested. Neither have Mike or Larry - something that seems to run with the men in the family. My cousin Mylinda has been tested and is deficient, her brother and all our male cousins refuse to be tested.
Now that I also have an irregular heartbeat, anti-coagulation full time is necessary. At this point, I am on a monthly blood check for my INR - or Pro-Time - clotting time - check. I am to stay between 2.0 and 3.0 - and usually do this with 5 mg of Coumadin 6 nights a week, 2.5 mg on Friday nights only.
Lots of things can affect clotting - for instance - I am not to drink green tea and limit the green leafy veggies I eat. I love turnip greens, eating a big bait of them will definitely thicken my blood because of the Vitamin K in them. ALso, sickness, colds, vomiting, diarrhea - any of these can change your count and may require a weekly check of the INR. Antibiotics - well they bring their own special brands of hell - and you'll be getting blood drawn once a week for a month or two to recover and maintain after them.
Alcohol plays a whole other part - I don't drink anything at all now because of the meds I take. My blood is thin enough and alcohol will thin your blood even more - so it could get very dangerous. Your blood can get so thin, you will begin to seep blood thru your skin pores. That is a crisis and would require a 911 call if that ever happened.
For the persons who are Protein S Deficient, it is critical that they wear some kind of medical alert ID - and that workplace and family members know medical treatment, etc. in case of an emergency where you are rendered incapable of speaking.
But, knowledge is power. All of these things I know and they've just become part of my regular routine - I don't even really think about them.
Thursday, January 21, 2010
So as of now..
I am pretty much in a holding pattern. Things are much improved on the female problem side - so far no further bleeding at all. That means I have more blood and am stronger - which I can tell because I feel like doing more. And, I'm not wearing socks and sweaters all the time!
I have had to switch to a walker instead of the cane, which is regression instead of progression. But, my left hip is gone - it and the knee. There is no cartilage at all in either, the bones crunch against each other with every move I make, and the pain is pretty much unbearable. The strange thing with my hip though is that it didn't start acting up until I had lost a lot of weight. I suppose the extra cushion and the fact that I wasn't trying to do as much was hiding the fact that the hip wasn't working well.
Recently my PCP did prescribe the lowest level of pain killer to see if it would help. At first, I didn't think it did, but if I don't take it on schedule, I can tell a difference. I actually forgot to call in the refill earlier this month and was without a couple of days - now then I could tell it was helping. I am still in pain which seems to be linked to how much activity I'm trying to do - if I stay home and rest quite a bit - there is almost no pain. Get up, shower, dress, go to work, maybe stop at the store, well, by the time I get home it's all I can do to come inside, get in my bed, take 2 pain pills and try to get some relief.
The good thing about this very low dose is that there are no side effects like drowsiness or constipation. I don't get high off of it - so no one else would want to steal it - unless I guess they were going to take a handful??? The bad thing is that there is still some pain involved - but I'm not sure I want to take the next step yet in narcotics. My mind is still good - I'm not ready to fuzzy that up!
On my last visit to the doctor which was the week between Christmas and New Year's - I was at a weight of 407 pounds!! I have not weighed that much (little) since 1998 or so! I had hoped to be down to 400 by January 1 so I was close. I really hope to be down to 350 by June 1. That is a bit ambitious but if I stay on a steady path I should be able to do it.
And believe me when I say I need a face lift!! I am about to order some Philosphy cleansers and toners - and may even try the Preparation H - there is that much saggy skin on my face and chin.
That's not all either - believe me when I say I have no boobs left - and what is there moved way down South!! Even my legs have sags right below the kneecaps where there is additional skin. I can hope that hydration and lots of moisturizing will take care of some of this. If I am successful in getting down to 200 pounds - my ultimate goal - then I will have to consider some cosmetic lifts and tucks at that time. There'll just be no way around it being my age and at that point having lost 2/3 of my body weight!
So that's my physical update - tomorrow more on the Protein S deficiency and what I've come to know about it.
I have had to switch to a walker instead of the cane, which is regression instead of progression. But, my left hip is gone - it and the knee. There is no cartilage at all in either, the bones crunch against each other with every move I make, and the pain is pretty much unbearable. The strange thing with my hip though is that it didn't start acting up until I had lost a lot of weight. I suppose the extra cushion and the fact that I wasn't trying to do as much was hiding the fact that the hip wasn't working well.
Recently my PCP did prescribe the lowest level of pain killer to see if it would help. At first, I didn't think it did, but if I don't take it on schedule, I can tell a difference. I actually forgot to call in the refill earlier this month and was without a couple of days - now then I could tell it was helping. I am still in pain which seems to be linked to how much activity I'm trying to do - if I stay home and rest quite a bit - there is almost no pain. Get up, shower, dress, go to work, maybe stop at the store, well, by the time I get home it's all I can do to come inside, get in my bed, take 2 pain pills and try to get some relief.
The good thing about this very low dose is that there are no side effects like drowsiness or constipation. I don't get high off of it - so no one else would want to steal it - unless I guess they were going to take a handful??? The bad thing is that there is still some pain involved - but I'm not sure I want to take the next step yet in narcotics. My mind is still good - I'm not ready to fuzzy that up!
On my last visit to the doctor which was the week between Christmas and New Year's - I was at a weight of 407 pounds!! I have not weighed that much (little) since 1998 or so! I had hoped to be down to 400 by January 1 so I was close. I really hope to be down to 350 by June 1. That is a bit ambitious but if I stay on a steady path I should be able to do it.
And believe me when I say I need a face lift!! I am about to order some Philosphy cleansers and toners - and may even try the Preparation H - there is that much saggy skin on my face and chin.
That's not all either - believe me when I say I have no boobs left - and what is there moved way down South!! Even my legs have sags right below the kneecaps where there is additional skin. I can hope that hydration and lots of moisturizing will take care of some of this. If I am successful in getting down to 200 pounds - my ultimate goal - then I will have to consider some cosmetic lifts and tucks at that time. There'll just be no way around it being my age and at that point having lost 2/3 of my body weight!
So that's my physical update - tomorrow more on the Protein S deficiency and what I've come to know about it.
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