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.
Sunday, January 31, 2010
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.
Tuesday, January 19, 2010
Update #2
Now, I had been glad for my surgery to be Monday, November 9th. The surgeon normally does surgery on Monday and Friday - and I had asked specifically not to be scheduled on Friday the 13th. I'm not a superstitious person by nature - faith doesn't have room for that - but I thought I might not tempt fate since it had already been such a hard year! Still not sure what I think about the whole Friday thing with the bleeding, except that I probably came as close to cardiac arrest as I've ever been and they sure made me believe it.
In the week after I came home, I had to see the cardiologist and the gyn docs again. I was doing ok considering the circumstances, but the cardiologist was not happy. He is a very soft spoken man, but he is Italian and God help the gyn team if they kill me!
When I saw the surgeon for a follow up visit - she informed me that she had not been able to ablate my entire uterus. It is much larger and flatter than they expected - did no one see that in the three ultrasounds I had BEFORE the surgery? So the area next to my right ovary wasn't scraped - hence I would continue to have some monthly cycle - although they don't expect it to be bad.
She also said that the surgery - normally less than 30 minutes - had taken close to 2 hours because of the size of my uterus. BUT, since I managed to survive that she is confident that once I have rebuilt blood and stamina, I will be able to survive a vaginal hysterectomy. We shall see - I'm not making any plans for that.
She also said the bleed was from my anti-coagulation therapy. Now, I'm normally on 5mg coumadin a day for the clotting disorder and the A-fib (irregular heartbeat). To prepare for the surgery, I came off the coumadin and went on Lovenox injections twice a day for 5 days before and twice a day for 9 days afterward.
That wasn't a really big deal for me - I'd been on Heparin thru both pregnancies and Lovenox at other times, giving myself a shot is just routine. However, I had questioned the dosage when I'd picked up the prescription. I've always done 1 ml twice a day - this time they've written it for 2ml twice a day. I called the pharmacy first to see if they'd filled it correctly, then onto the doctor's office and the coumadin clinic (who monitors my anticoagulation). Everyone says it's the right dose. So, I go about giving myself 4 shots a day instead of 2 - see where that got me? There is no official word from VUMC that I was overdosed on Lovenox, but I do think that's what happened.
I think I have recovered from that - I can tell that I've rebult blood - since I don't have to wear socks to bed nor sit with a blanket or afghan over me. On my last blood work, my hematocrit was up to 27 - cardiology wants me to get to a minimum of 36 - 40 would be better.
The best part is that they have all put me on a three month recheck - so I see them all again in March. Unless of course there is a problem. But, I am optimistic that there won't be and the worst is behind me.
Most of my friends here at Trevecca have said I am beginning to sound like my old self again - and I've been laughing. When we meet in the lobby to speak, I join the conversation instead of sitting there with my head down because I'm too tired to hold it up. I've been physically tired from overworking and too little sleep - especially when the kids were babies, etc. - but nothing compares to the tiredness and fatigue of anemia. There were days that fixing myself something to eat - and it would be something quick and easy - was more than I could physically do.
The first week I was home, besides being so tired, I got an upper respiratory infection. Most likely from sitting in the ER - but who knows? I had to go in for a check - in 5 days I had lost 14 pounds. That was not good weight loss - and I'm sure I put some of that back on in the yo-yo weeks afterward. I had simply not eaten for those days because I felt bad and I was so weak I didn't feel like fixing anything but toast. I have discovered too - that instant oatmeal and grits can be a girl's bestfriend when she's sick. Nourishment that is not bad for me and takes 60 seconds in the microwave!!
Although my total weight loss at this point is 194 pounds, I have not worked real hard at it since the surgery. I've actually tried to eat more meat, leafy greens, and dark colored veggies (beets and sweet potatoes) to help with the blood. I don't think I'm gaining but the losing has slowed - and has just been necessary.
Now that I'm feeling much better, I can get back on track. And the CSA will start May 1. That will be a good thing again!
I hope to update regularly from this point on about progress and share some recipes I created that were excellent food and healthy!
In the week after I came home, I had to see the cardiologist and the gyn docs again. I was doing ok considering the circumstances, but the cardiologist was not happy. He is a very soft spoken man, but he is Italian and God help the gyn team if they kill me!
When I saw the surgeon for a follow up visit - she informed me that she had not been able to ablate my entire uterus. It is much larger and flatter than they expected - did no one see that in the three ultrasounds I had BEFORE the surgery? So the area next to my right ovary wasn't scraped - hence I would continue to have some monthly cycle - although they don't expect it to be bad.
She also said that the surgery - normally less than 30 minutes - had taken close to 2 hours because of the size of my uterus. BUT, since I managed to survive that she is confident that once I have rebuilt blood and stamina, I will be able to survive a vaginal hysterectomy. We shall see - I'm not making any plans for that.
She also said the bleed was from my anti-coagulation therapy. Now, I'm normally on 5mg coumadin a day for the clotting disorder and the A-fib (irregular heartbeat). To prepare for the surgery, I came off the coumadin and went on Lovenox injections twice a day for 5 days before and twice a day for 9 days afterward.
That wasn't a really big deal for me - I'd been on Heparin thru both pregnancies and Lovenox at other times, giving myself a shot is just routine. However, I had questioned the dosage when I'd picked up the prescription. I've always done 1 ml twice a day - this time they've written it for 2ml twice a day. I called the pharmacy first to see if they'd filled it correctly, then onto the doctor's office and the coumadin clinic (who monitors my anticoagulation). Everyone says it's the right dose. So, I go about giving myself 4 shots a day instead of 2 - see where that got me? There is no official word from VUMC that I was overdosed on Lovenox, but I do think that's what happened.
I think I have recovered from that - I can tell that I've rebult blood - since I don't have to wear socks to bed nor sit with a blanket or afghan over me. On my last blood work, my hematocrit was up to 27 - cardiology wants me to get to a minimum of 36 - 40 would be better.
The best part is that they have all put me on a three month recheck - so I see them all again in March. Unless of course there is a problem. But, I am optimistic that there won't be and the worst is behind me.
Most of my friends here at Trevecca have said I am beginning to sound like my old self again - and I've been laughing. When we meet in the lobby to speak, I join the conversation instead of sitting there with my head down because I'm too tired to hold it up. I've been physically tired from overworking and too little sleep - especially when the kids were babies, etc. - but nothing compares to the tiredness and fatigue of anemia. There were days that fixing myself something to eat - and it would be something quick and easy - was more than I could physically do.
The first week I was home, besides being so tired, I got an upper respiratory infection. Most likely from sitting in the ER - but who knows? I had to go in for a check - in 5 days I had lost 14 pounds. That was not good weight loss - and I'm sure I put some of that back on in the yo-yo weeks afterward. I had simply not eaten for those days because I felt bad and I was so weak I didn't feel like fixing anything but toast. I have discovered too - that instant oatmeal and grits can be a girl's bestfriend when she's sick. Nourishment that is not bad for me and takes 60 seconds in the microwave!!
Although my total weight loss at this point is 194 pounds, I have not worked real hard at it since the surgery. I've actually tried to eat more meat, leafy greens, and dark colored veggies (beets and sweet potatoes) to help with the blood. I don't think I'm gaining but the losing has slowed - and has just been necessary.
Now that I'm feeling much better, I can get back on track. And the CSA will start May 1. That will be a good thing again!
I hope to update regularly from this point on about progress and share some recipes I created that were excellent food and healthy!
Sunday, January 17, 2010
Update #1
OK, since it's been so long since I updated I think I'll break it down into segments. This one will cover the surgery on November 9th and subsequent week.
I went in on the 9th for the uterine ablasion. I was still feeling a bit apprehensive which did not get any better after anesthesiology came to see me. They advised they would put me completely under and breathe for me, since they (the surgeons) would be removing tissue, etc. it would be the best. But, it wasn't what I'd expected nor prepared for. I shared with them my last experience under general and they assured me they would be sure my experience was better. One of them said they'd be sure I was loopy before they gave me the 'paralytics'!! Now, that is paralyzing drugs right? I know this, but my nerves were shot so I was rather upset by this time.
I have to give it to them - that part was a breeze. I came around without any horrid memories of the breathing tube going in or coming out!! I will say this though - I felt the worse I ever have waking up - to which I know I can contribute my overall health situation and my age. It was not fun.
After a couple of hours I was discharged and came home. Things had gone pretty well - the surgeon didn't talk to me too much - I had overheard the others saying my heart acted up a bit toward the end but I had done ok.
There was some bleeding - not real bad - a lot of bloody water from the surgery actually. Things were going well I thought. Oh, and this was on Monday!
Tuesday and Wednesday I laid around, stayed in bed alot, but generally was feeling pretty good about things. Not much bleeding and no pain to speak of - had to be a success right? Don't bet on it!
Thursday I woke up and felt pretty good actually. I got up, got a shower, washed my hair, and got dressed. Thought I felt pretty human and for a few minutes contemplated the course of the day. I was actually on my way to the bathroom when I felt like I was urinating on myself, looked down and saw blood coming thru my clothes, lots of blood, going all over me and onto the floor, etc. It was, needless to say, not a good day.
I thought that it was probably just from the surgery and I'd needed to do that since the bleeding had been minimal, but when it continued I realized I was hemorrhaging. I considered calling 911 and couldn't figure out they would be able to move me since I was bleeding so bad. So, I stayed at home until it slowed up enough that I could go to the ER.
That was not a good idea!! My hematocrit had gone from 30 on Monday to 19 - so an immediate transfusion was ordered. I got two units on Friday, then another two on Saturday when I'd only come back to a hematocrit of 23. The general concensus was that my blood had dropped further than 19 before the transfusions were started. They let me come home on Sunday, only because I am 5 minutes from Vanderbilt. My hematocrit was up to 25, but I was very weak from the whole experience.
I have strict instructions that should any bleeding start again I am to call 911, tell them I am a heart patient who is hemorrhaging and come in an ambulance. If I ever walk into the ER again, I am to tell them I am a heart patient and I am not to wait in the waiting room. My blood got so low that my heart wasn't able to get enough to pump - that is very very bad!
Since one of the GYN surgeons had come to the ER to see me and commented that my uterus had two minds - well, it's named Sybil now. And, Sybil is not going to take me out of this world!! I have lived thru too much for a small organ that is no longer useful to me to be the cause of death.
More on this next update!
I went in on the 9th for the uterine ablasion. I was still feeling a bit apprehensive which did not get any better after anesthesiology came to see me. They advised they would put me completely under and breathe for me, since they (the surgeons) would be removing tissue, etc. it would be the best. But, it wasn't what I'd expected nor prepared for. I shared with them my last experience under general and they assured me they would be sure my experience was better. One of them said they'd be sure I was loopy before they gave me the 'paralytics'!! Now, that is paralyzing drugs right? I know this, but my nerves were shot so I was rather upset by this time.
I have to give it to them - that part was a breeze. I came around without any horrid memories of the breathing tube going in or coming out!! I will say this though - I felt the worse I ever have waking up - to which I know I can contribute my overall health situation and my age. It was not fun.
After a couple of hours I was discharged and came home. Things had gone pretty well - the surgeon didn't talk to me too much - I had overheard the others saying my heart acted up a bit toward the end but I had done ok.
There was some bleeding - not real bad - a lot of bloody water from the surgery actually. Things were going well I thought. Oh, and this was on Monday!
Tuesday and Wednesday I laid around, stayed in bed alot, but generally was feeling pretty good about things. Not much bleeding and no pain to speak of - had to be a success right? Don't bet on it!
Thursday I woke up and felt pretty good actually. I got up, got a shower, washed my hair, and got dressed. Thought I felt pretty human and for a few minutes contemplated the course of the day. I was actually on my way to the bathroom when I felt like I was urinating on myself, looked down and saw blood coming thru my clothes, lots of blood, going all over me and onto the floor, etc. It was, needless to say, not a good day.
I thought that it was probably just from the surgery and I'd needed to do that since the bleeding had been minimal, but when it continued I realized I was hemorrhaging. I considered calling 911 and couldn't figure out they would be able to move me since I was bleeding so bad. So, I stayed at home until it slowed up enough that I could go to the ER.
That was not a good idea!! My hematocrit had gone from 30 on Monday to 19 - so an immediate transfusion was ordered. I got two units on Friday, then another two on Saturday when I'd only come back to a hematocrit of 23. The general concensus was that my blood had dropped further than 19 before the transfusions were started. They let me come home on Sunday, only because I am 5 minutes from Vanderbilt. My hematocrit was up to 25, but I was very weak from the whole experience.
I have strict instructions that should any bleeding start again I am to call 911, tell them I am a heart patient who is hemorrhaging and come in an ambulance. If I ever walk into the ER again, I am to tell them I am a heart patient and I am not to wait in the waiting room. My blood got so low that my heart wasn't able to get enough to pump - that is very very bad!
Since one of the GYN surgeons had come to the ER to see me and commented that my uterus had two minds - well, it's named Sybil now. And, Sybil is not going to take me out of this world!! I have lived thru too much for a small organ that is no longer useful to me to be the cause of death.
More on this next update!
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