So, between the last post and today I've seen the cardiologist - who said "NO" to the robotic surgery - I wouldn't survive it. (that's a little scary)
I've seen the GYN surgeons who want to proceed with the uterine ablasion and I've had the pre-op visit along with all necessary bloodwork.
Next Tuesday I'll see the cardiologist again and get his final ok - then on Monday November 9 they will do the procedure.
It should only take a little over an hour - it basically is similar to a D&C, but the shave the entire uterine lining off, then laser it to prevent it from growing back (that's the 100% success we're looking for).
For me it's the best of a lot of things - I won't have a period any longer, but I won't go into menopause early. I won't have to take HRT or continue on the progesterone I've been on now almost three months. I shouldn't continue to have problems with anemia or need any more transfusions - all of this for the low low price of outpatient surgery and back home by bedtime. And, best case scenario, it holds me for 2-3 years at which time they think I will go thru menopause myself and I won't ever have to have the hysterectomy.
This procedure will remove the fibroids that are suspended inside the uterus too - not the ones in the walls - but those seem to be calcified - just the little active aliens that keep causing me all these problems.
I am a little apprehensive - but I'm hopeful that once I can get a blood count back to over 30 I will feel tremendously better.
At that point, I suppose I'm going to have to deal with the knees/hips issues. It is always something!!
BTW - I have lost the 20 pounds I'd put back on - so - maybe by January 1 I will break the 400 barrier! I'm hoping and eating my veggies!!
Wednesday, October 28, 2009
Friday, September 25, 2009
Surgery is on the Horizon
I saw the surgeon yesterday - and the plan is as this: They (gyn surgery team) will meet with my cardiologist to see what and how much I can tolerate.
If I can be stood on my head for four hours - I'll have a robotic hysterectomy. Eight one inch incisions, but only a two week recovery and very few complications.
If I can't be stood on my head for four hours - I'll have a uterine ablasion which takes about 2 hours and the anesthesia is not as complete - which means they won't breathe for me. It'll take the entire lining of my uterus, including the fibroids and a polyp - now what's the difference - that I didn't know was there but found out yesterday. If it's 100% successful, I won't have any more bleeding and once my blood rebuilds to a good level and my weight gets down to less than 350 - I will have a traditional hysterectomy.
They said they can't continue to transfuse me every other month - there are some dangers with that - and that the anemia has damaged my heart and must be stopped as soon and safely as possible.
Who knew that having abnormally heavy periods for years would cause damage to your heart? I should have taken better care of myself during the years my kids were teenagers but I ignored all my symptoms and only went to the doctor when I was absolutely sick enough to die.
Now I really am sick enough to die and sorry about not taking better care of myself. Don't do as I've done, see your doctor regularly.
If I can be stood on my head for four hours - I'll have a robotic hysterectomy. Eight one inch incisions, but only a two week recovery and very few complications.
If I can't be stood on my head for four hours - I'll have a uterine ablasion which takes about 2 hours and the anesthesia is not as complete - which means they won't breathe for me. It'll take the entire lining of my uterus, including the fibroids and a polyp - now what's the difference - that I didn't know was there but found out yesterday. If it's 100% successful, I won't have any more bleeding and once my blood rebuilds to a good level and my weight gets down to less than 350 - I will have a traditional hysterectomy.
They said they can't continue to transfuse me every other month - there are some dangers with that - and that the anemia has damaged my heart and must be stopped as soon and safely as possible.
Who knew that having abnormally heavy periods for years would cause damage to your heart? I should have taken better care of myself during the years my kids were teenagers but I ignored all my symptoms and only went to the doctor when I was absolutely sick enough to die.
Now I really am sick enough to die and sorry about not taking better care of myself. Don't do as I've done, see your doctor regularly.
Monday, September 21, 2009
Highway to Health
Hey - did anybody notice that Dr. Oz has hit the road with a healthy eating program called "Highway to Health"? I like that - in fact I'd have used that as my blog name if I'd been smart enough to think about it.
Should be some pretty interesting shows - he takes a real no nonsense common sense approach which doesn't make it hard. That is why what I'm doing works for me.
AND - for some great recipes that are simple, few ingredients, healthy and GOOD - sign up at prevention.com for their daily recipe. I've enjoyed them - and have used them as a launching ground for coming up with some of my own.
In fact - I will begin to add recipes that I've found or created on my blog to help any of you out that need to eat a little healthier. It's kinda a cool challenge to figure out ways to make things that tastes good but have much less calories and fat to them!
Should be some pretty interesting shows - he takes a real no nonsense common sense approach which doesn't make it hard. That is why what I'm doing works for me.
AND - for some great recipes that are simple, few ingredients, healthy and GOOD - sign up at prevention.com for their daily recipe. I've enjoyed them - and have used them as a launching ground for coming up with some of my own.
In fact - I will begin to add recipes that I've found or created on my blog to help any of you out that need to eat a little healthier. It's kinda a cool challenge to figure out ways to make things that tastes good but have much less calories and fat to them!
Transfusion News
So I went into the Vanderbilt Clinic on Friday for a transfusion of 2 units. My hematocrit was still 25 - I don't understand all of the readings and I need to research them, but suffice it to say right now that every one of my numbers was red - which means nothing is where it should be.
Transfusion went fine - but my blood pressure spiked and I had to stay about three extra hours until it began to come down after being medicated. I couldn't for the life of me figure it out - then remembered that one of the nurses made me really angry - I didn't say anything but I was in a slow burn. Actually, her comments were so out of line and rascist that I've considered calling to report her. I didn't find out exactly where she was from, but she's not from Davidson County. I chalked her off to Cheatham County and forgot it, which is probably when my blood pressure started to back down some.
I still don't feel really good - I can tell I have more energy and my face has some color - but my eyelids are still white, my gums are still white and I'm still tired.
I see the surgeon on Thursday - maybe just maybe I'll get an idea of when there will be relief in sight.
Transfusion went fine - but my blood pressure spiked and I had to stay about three extra hours until it began to come down after being medicated. I couldn't for the life of me figure it out - then remembered that one of the nurses made me really angry - I didn't say anything but I was in a slow burn. Actually, her comments were so out of line and rascist that I've considered calling to report her. I didn't find out exactly where she was from, but she's not from Davidson County. I chalked her off to Cheatham County and forgot it, which is probably when my blood pressure started to back down some.
I still don't feel really good - I can tell I have more energy and my face has some color - but my eyelids are still white, my gums are still white and I'm still tired.
I see the surgeon on Thursday - maybe just maybe I'll get an idea of when there will be relief in sight.
Wednesday, September 16, 2009
Medical Updates
Just some information on where I stand health wise as of today:
I had a repeat echocardiogram on September 2. In my very limited understanding of the pictures and sounds I thought things had improved some. Renee was with me and she thought my heart sounded better. Of course, the person doing the test will not tell you a thing.
When the letter came from the doctor in a couple of days - GOOD NEWS! The mitral valve leakage was less and the pressure in my pulmonary arteries had gone from 80 down to 55 - remember 25 is where it's supposed to be. But, all in all a very good report.
Means the meds are working and getting the weight off, especially the extra fluid, is a must do all the time for me.
I saw the cardiologist on September 8. I was really scared about this one - I guess I expected that he would be like the orthopaedic doctor and scream and yell and me about my weight and tell me there was no hope. He was not like that at all - he was very nice and explained a great deal to me.
My heart walls have thickened and the chambers on the right side have enlarged. Part of this is due to the fact that I've been overweight for years and my heart has worked harder, but that in itself is not the deal breaker. He says hearts adjust somewhat to weight. BUT, the biggest deal is that I've been anemic for close to 5 years (as can be documented by Vanderbilt's records). That very fact has made my heart work even harder and he says is mostly responsible for the shape I am in now.
Bottom line - his words - "the uterus has got to go". In 1999 my hematocrit was 39 - that was great. For the 5 years he can review - I've never been above a 30 and mostly never above a 28. Blood work done on the 8th showed me down to a 25 - and at that point I was 9 days into what became a 12 day cycle. Remember now, that I take 200 mg. of progesterone a day so I don't have a cycle. My uterus is making a fool out of all of us and killing me slowly!!
So, he added one more medicine to my regiment - a vaso-dilator to help my pulmonary artery pressure. I seem to tolerate it well, in fact, I think it is helping tremendously because I use the inhaler much less. Which means I used it sometimes because of chest pressure, not asthma related shortness of breath. A little scary!
So, I see the cardiologist again in a month. In the meantime, I will probably have a transfusion. Talked to my regular doctor's office this week who had set up a transfusion for last week, but then couldn't fine my phone number???
And - I've put back on 26 lbs - all fluid - I can see it in my legs. Some difference of opinion about fluid pills - but according to the cardiologist - I will take one every day FOR THE REST OF MY LIFE!! Not to fail - even if I'm traveling.
All in all, not too bad. The birthday bash for next June 1 - my 1/2 centary mark - is turning into a hell of party. God knows if I make it to June 1, we all need to be there and celebrate!!
I had a repeat echocardiogram on September 2. In my very limited understanding of the pictures and sounds I thought things had improved some. Renee was with me and she thought my heart sounded better. Of course, the person doing the test will not tell you a thing.
When the letter came from the doctor in a couple of days - GOOD NEWS! The mitral valve leakage was less and the pressure in my pulmonary arteries had gone from 80 down to 55 - remember 25 is where it's supposed to be. But, all in all a very good report.
Means the meds are working and getting the weight off, especially the extra fluid, is a must do all the time for me.
I saw the cardiologist on September 8. I was really scared about this one - I guess I expected that he would be like the orthopaedic doctor and scream and yell and me about my weight and tell me there was no hope. He was not like that at all - he was very nice and explained a great deal to me.
My heart walls have thickened and the chambers on the right side have enlarged. Part of this is due to the fact that I've been overweight for years and my heart has worked harder, but that in itself is not the deal breaker. He says hearts adjust somewhat to weight. BUT, the biggest deal is that I've been anemic for close to 5 years (as can be documented by Vanderbilt's records). That very fact has made my heart work even harder and he says is mostly responsible for the shape I am in now.
Bottom line - his words - "the uterus has got to go". In 1999 my hematocrit was 39 - that was great. For the 5 years he can review - I've never been above a 30 and mostly never above a 28. Blood work done on the 8th showed me down to a 25 - and at that point I was 9 days into what became a 12 day cycle. Remember now, that I take 200 mg. of progesterone a day so I don't have a cycle. My uterus is making a fool out of all of us and killing me slowly!!
So, he added one more medicine to my regiment - a vaso-dilator to help my pulmonary artery pressure. I seem to tolerate it well, in fact, I think it is helping tremendously because I use the inhaler much less. Which means I used it sometimes because of chest pressure, not asthma related shortness of breath. A little scary!
So, I see the cardiologist again in a month. In the meantime, I will probably have a transfusion. Talked to my regular doctor's office this week who had set up a transfusion for last week, but then couldn't fine my phone number???
And - I've put back on 26 lbs - all fluid - I can see it in my legs. Some difference of opinion about fluid pills - but according to the cardiologist - I will take one every day FOR THE REST OF MY LIFE!! Not to fail - even if I'm traveling.
All in all, not too bad. The birthday bash for next June 1 - my 1/2 centary mark - is turning into a hell of party. God knows if I make it to June 1, we all need to be there and celebrate!!
Friday, August 21, 2009
Massage
A very dear friend sent me a gift card for a massage last week. I went yesterday - it was utterly divine!
The room was very cool, but there was a sheet and blanket. The lights were very dim and soft music was playing. He really worked on my back - but the best part was my arms and legs. When the 50 minutes was over, I didn't think I would be able to stand up - I was that relaxed. I swear it was better than sex!! Or similar - you know when it's been so good you can't stand up - well - like that!
I will definitely be reworking my budget to include $50.00 a month for that hour of ultimate relaxation - check them out at Massageenvy.com - they have over 600 locations across America. Well worth the time my friends, well worth the time!
The room was very cool, but there was a sheet and blanket. The lights were very dim and soft music was playing. He really worked on my back - but the best part was my arms and legs. When the 50 minutes was over, I didn't think I would be able to stand up - I was that relaxed. I swear it was better than sex!! Or similar - you know when it's been so good you can't stand up - well - like that!
I will definitely be reworking my budget to include $50.00 a month for that hour of ultimate relaxation - check them out at Massageenvy.com - they have over 600 locations across America. Well worth the time my friends, well worth the time!
How Many Trips to Vanderbilt Will I Make?
I should have been counting them this year - how many times I've been over there! I get bloodwork every other Tuesday, regularly. For the next month or so I have multiple appointments.
I am having a repeat echocardiogram on August 25 - this is to see if the pressures in my heart have improved at all. I pray they have - I feel better but that's not really an indicator. If the meds and weight loss have not helped them to improve, I am in worse trouble that I thought and pretty big trouble.
The next week I will see a cardiologist, for the first time. The one I'm seeing is also on the transplant team. While those words have not come up, I know enough to know that if things are not any better, a heart/lung transplant would be the best option for a longer life. But, I've already decided that I will not do that. Between the history of having a wet body (easy to retain fluid) and the blood clots, I doubt the transplant team would approve me and I'd really question them if they did - I mean I'm not about to be another science experiment!!
I see the GYN again September 24 and between now and then will have a mammogram and bone density scan. Those seem a little mute on point to me, if my heart is going to give out in a year or two, who cares if I have cancer or brittle bones???
I don't mean to sound ugly - I just won't go thru massive rounds of treatment for things that won't make a lot of difference.
I do hope for at least 3-5 more years - so that I can see Renee finish college and get into her field of work. Maybe in that period of time I will see Lynn get himself together and be a productive citizen.
It is humbling in more ways than one to realize that your life is closer to being over - I mean everyday after 40 we are all over 1/2 of the way done, but, this feels a little different to me. And, after all of the feelings after the divorce, etc. I want to love again. No expectations this time, no children to raise, just me and a special someone doting on each other daily, making each day the best it can be.
If I sound like I'm in a pity party, I'm really not, I've just realized even a few more things than I already knew.
I am having a repeat echocardiogram on August 25 - this is to see if the pressures in my heart have improved at all. I pray they have - I feel better but that's not really an indicator. If the meds and weight loss have not helped them to improve, I am in worse trouble that I thought and pretty big trouble.
The next week I will see a cardiologist, for the first time. The one I'm seeing is also on the transplant team. While those words have not come up, I know enough to know that if things are not any better, a heart/lung transplant would be the best option for a longer life. But, I've already decided that I will not do that. Between the history of having a wet body (easy to retain fluid) and the blood clots, I doubt the transplant team would approve me and I'd really question them if they did - I mean I'm not about to be another science experiment!!
I see the GYN again September 24 and between now and then will have a mammogram and bone density scan. Those seem a little mute on point to me, if my heart is going to give out in a year or two, who cares if I have cancer or brittle bones???
I don't mean to sound ugly - I just won't go thru massive rounds of treatment for things that won't make a lot of difference.
I do hope for at least 3-5 more years - so that I can see Renee finish college and get into her field of work. Maybe in that period of time I will see Lynn get himself together and be a productive citizen.
It is humbling in more ways than one to realize that your life is closer to being over - I mean everyday after 40 we are all over 1/2 of the way done, but, this feels a little different to me. And, after all of the feelings after the divorce, etc. I want to love again. No expectations this time, no children to raise, just me and a special someone doting on each other daily, making each day the best it can be.
If I sound like I'm in a pity party, I'm really not, I've just realized even a few more things than I already knew.
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