Yesterday, I get a phone call from the Nurse Practitioner that I seen over a week ago. She called to tell me that she was sorry for her nurses not giving me the results of my blood work in a timely manner. She also wanted to know if I understood all of my blood work results, and if I was comfortable with the Surgeon that she had choosen for me. Can you believe this? An apology?? She also offered pain medication since I still had a few days before I seen the surgeon, and she knew it would be a few more days before I could have the actual surgery. She is awesome!!
Tomorrow, I will see this surgeon and we will decide what we will do about all this pain, and if she thinks, as the Nurse Practitioner does, that I have adhesions, and that they need to be removed. Usually, the Doctors will wait for my cardiologist approval to get off the plavix, and then I stop it for 7-10 days before any procedure. Well, I stopped it last Saturday, because I have to have this done, because I cannot live with this pain much longer. I am not waiting for the permission from my cardiologist, because I know he will give it, if they deem this surgery is going to make me painfree. So, I am praying that the surgery date is going to be within a week or so.
From what I understand, this surgery is just a few holes in the belly, find all the scar tissue, cut it out, put some tape on the holes, and go home. As long as my heart doesn't give them any fits, I will be good to go. I don't feel there should be any problems, only less pain, and I am so looking forward to it. :)
I will write tomorrow and let everyone know what her decision is going to be, and hopefully when my surgery is going to be.
Until then....
Thursday, June 17, 2010
Sunday, June 6, 2010
Want to See God Smile....Make Plans!
Well, this is what Charles keeps telling me. I think this is more to cheer me up than to explain why nothing "seems" to be going right, and I am willing to take all the blame for it.
In the last 30 days, we have made plans to go camping, twice, and has it happened, even once? Nope. And both times, it has been because of my health. First time, old problems creaping back into our lives. Second time, a new problem surprising us, and at a most inconvenient time.
The first time, we were going to go camping, just about an hour from home. We went shopping, got food, packed our clothes, everything was ready. We drove out to the campsite and I thought this one paticular site was going to be fantastic. It was on a dead end spot. There were 2 right next to eachother. Huge beautiful trees covering the area, so it would be nice and cool, day and night, and the river was running right next to them. Sounds great doesn't it? I thought so. Then the rain came, but that was ok, because it was going to stop before the weekend, but what I hadn't counted on was all that humidity.
Now, as you might remember, a few weeks ago, I started on a new medication to keep my heart rate down and it was to keep me from fainting, and basically feeling horrible. Well, this new little pill is doing it's job as far as keeping my heart rate slow. I have never had a heart rate so low before, but sad to say, all those feelings are still there as if my heart rate is still 180. I can't breath, I am light headed, almost fainting, shaking, and the most horrible fatigue, I am lucky to walk to the car without someone holding onto my hand. Now put all this with the humidity, and camping doesn't seem like much fun after all. Maybe with an oxygen tank, or two. Ha ha.
Since there were going to be quit a few people camping there that weekend, we decided that we wouldn't stay there at night, but ride down there every day, visit, and then come home. If I could handle that okay the first day, we would go the next day...the next..well, you get the picture.
The first night, I had an awesome time. We rode there with another couple, and I got to see a lot of people that I had not seen in years. Lot of hugging, kissing and I miss you's. It was great! There was the biggest campfire that I had ever seen. We stayed for a little over an hour, and decided to ride into town to eat. 3 other couples rode back with us, and one couple split off so it was the 6 of us that went to eat and talk, and talk and talk. It was wonderful. We hadn't just sat and talked to other people for...well, what seems like forever. But, I have to admit, I was so exhausted already.
I love riding in the dark. It feels so cool, the roads aren't so crowded, and it seems like Charles and I are the only ones out there for miles. I can lay my head on his back, close my eyes, and just relax and not have to think or worry about anything. All these medical problems, for awhile, just do not exsist.....did I say for awhile?
We went back to the campground another evening, and again we had a wonderful time. But by that night, I couldn't go on. Once I got into bed, I was there for 2 days. Not sleeping, just couldn't get the energy to get up and move around. I hurt all over, my hips were screaming at me, reminding me that they are fused together and why in the world would I put them through all this?? (unmedicated even!!)
And the best part, in one week, we were going camping for 7 days!!! *whew* This was a vacation for us to RELAX!!!! Remember that...RELAX!! But, after a couple days of rest, I was slowly back up and walking again...on to the next adventure.
Monday night, I sneezed. Shouldn't be a big deal, nothing to blog about, tell your friends about, or get on the phone begging for a doctor to see you ASAP about, right?? Wrong! I even got on facebook asking all my female friends who the best OB/GYN is in our area, not just the one you would go to, but the one that you would refer your best friend forever to!! (because we take far better care of our BFF's that we do ourselves) Got a Doc's name, and was on the phone in a heartbeat....my faster heartbeat, not a normal heartbeat, this was serious. ha ha What happened was, when I sneezed, I felt like I was stabbed in my right side, over and over again, turning that knife and twisting it, just to make sure it was in there!! OMG!!! I couldn't move, I couldn't breath..all I could do was hold my breath and pray it would go away soon. It did, but just not soon enough.
About 3 years ago, I had something like this happen, only farther up my right side. Charles took me to the ER, because we thought it was my gallbladder. It wasn't, they said. They couldn't see anything on the CT Scan, and because I had had so many abdominal surgeries, it was probably something called "adhesions". They don't like to remove them because even the removal will cause more of them...and sent me home. (after loading me up on Morphine)
I got into the Nurse Practitioner on Friday afternoon. She had a few ideas. 1. Kidney stone. 2. Appendix 3. Adensions. Plan would be check urine for blood, for kidney stones, check blood for white cells, if elevated for appendix. If both were negative, she would "hook me up with a good surgeon" to get rid of the adhesions because she feared they were attached to my bladder and intestines, and when I sneezed, (that is what I am feeling), and she was afraid it could rip my bladder or intestine.
SO, I was to call back for the "stat" order results, and the next plan at 4 p.m.
I called at 4 p.m., all was negative, I asked who the surgeon was going to be, and who was going to make the appointment, them or me? The very slow reply was.... "what are you talking about" Seems, as my luck would have it, she left for the day...oh wait, it gets better..and took some vacation days, until Monday the 14th...and didn't leave any instructions for me!!! Now, how does this lead up to the camping trip???
Our next camping trip was to start tomorrow, and end on the 14th. (are ya smiling God??)
This was supposed to be our vacation for this year because, well, because we really can't afford to go to florida this year, or Maine..get the idea? We were going to relax in lawn chairs, have a beautiful campfire, there is a really lovely beach there, take some walks. It's a beautiful place. Take some rides on the bike. Just have some fun doing whatever we wanted to do. BUT...we decided that it would be best that we stick closer to home, closer to the hospital that at least knows what 42 pills I take each day, than to risk falling and ripping something, or having that one big sneeze not knowing where we are. I have to remind myself, I am on blood thinners, and if I do rip something inside, it will bleed rather quickly.
Do you ever start to think that with the snap of your fingers, you can ruin the entire summer? I try hard to tell myself, that I really have no control over this. I don't plan it. I am sorry it happens. WHY it always happens in the summer and fall is beyond me. Why it can't happen when it's freezing outside and nobody wants to get their tired old butt up and outside anyway.
I really am grateful for everything, and everyone that I have in my life, but, it's just so frustrating to be in pain all the time, "feel" you are dependent on people, when you worked so hard to get your independence, you had so many things you wanted to do before you died, and you know in your heart that these things will never happen, now you have forgotten what they were. And then, you start to wonder why you are even here.
Then, last night, our dear friend Brenda calls us up, needing some help moving something. When we got to her house, she called me inside, so excited to show me her NEW house that SHE had just purchased. She was so proud, and I was so proud for her. She has worked SO hard to get her life back in order, and she also now has custody of her daughter. What an accomplishment! Just seeing that pride in her face was pricless. You know that feeling where your heart just swells up in your chest just watching it all?..and it sure knocked me off my pitty pot!! Thank you Brenda!!
See, I've been throwing myself one huge pitty pot. Believe me, I can have a nice one too, with every fixin available, and not invite one single fucking person. Somehow I have to see that I didn't ask to be sick. I take my medications to keep myself going. I do the things the Doctors tell me to do. I have out lived my life expectancy by years, so it is working. I probably do more damage by pushing myself sometimes because I don't want to hurt peoples feelings, or ruin others good times by being the big wuss of the group.
Acceptance. Ouch! I think I'll save that for another day...but I won't wait too long. These pitty parties are getting too expensive.
In the last 30 days, we have made plans to go camping, twice, and has it happened, even once? Nope. And both times, it has been because of my health. First time, old problems creaping back into our lives. Second time, a new problem surprising us, and at a most inconvenient time.
The first time, we were going to go camping, just about an hour from home. We went shopping, got food, packed our clothes, everything was ready. We drove out to the campsite and I thought this one paticular site was going to be fantastic. It was on a dead end spot. There were 2 right next to eachother. Huge beautiful trees covering the area, so it would be nice and cool, day and night, and the river was running right next to them. Sounds great doesn't it? I thought so. Then the rain came, but that was ok, because it was going to stop before the weekend, but what I hadn't counted on was all that humidity.
Now, as you might remember, a few weeks ago, I started on a new medication to keep my heart rate down and it was to keep me from fainting, and basically feeling horrible. Well, this new little pill is doing it's job as far as keeping my heart rate slow. I have never had a heart rate so low before, but sad to say, all those feelings are still there as if my heart rate is still 180. I can't breath, I am light headed, almost fainting, shaking, and the most horrible fatigue, I am lucky to walk to the car without someone holding onto my hand. Now put all this with the humidity, and camping doesn't seem like much fun after all. Maybe with an oxygen tank, or two. Ha ha.
Since there were going to be quit a few people camping there that weekend, we decided that we wouldn't stay there at night, but ride down there every day, visit, and then come home. If I could handle that okay the first day, we would go the next day...the next..well, you get the picture.
The first night, I had an awesome time. We rode there with another couple, and I got to see a lot of people that I had not seen in years. Lot of hugging, kissing and I miss you's. It was great! There was the biggest campfire that I had ever seen. We stayed for a little over an hour, and decided to ride into town to eat. 3 other couples rode back with us, and one couple split off so it was the 6 of us that went to eat and talk, and talk and talk. It was wonderful. We hadn't just sat and talked to other people for...well, what seems like forever. But, I have to admit, I was so exhausted already.
I love riding in the dark. It feels so cool, the roads aren't so crowded, and it seems like Charles and I are the only ones out there for miles. I can lay my head on his back, close my eyes, and just relax and not have to think or worry about anything. All these medical problems, for awhile, just do not exsist.....did I say for awhile?
We went back to the campground another evening, and again we had a wonderful time. But by that night, I couldn't go on. Once I got into bed, I was there for 2 days. Not sleeping, just couldn't get the energy to get up and move around. I hurt all over, my hips were screaming at me, reminding me that they are fused together and why in the world would I put them through all this?? (unmedicated even!!)
And the best part, in one week, we were going camping for 7 days!!! *whew* This was a vacation for us to RELAX!!!! Remember that...RELAX!! But, after a couple days of rest, I was slowly back up and walking again...on to the next adventure.
Monday night, I sneezed. Shouldn't be a big deal, nothing to blog about, tell your friends about, or get on the phone begging for a doctor to see you ASAP about, right?? Wrong! I even got on facebook asking all my female friends who the best OB/GYN is in our area, not just the one you would go to, but the one that you would refer your best friend forever to!! (because we take far better care of our BFF's that we do ourselves) Got a Doc's name, and was on the phone in a heartbeat....my faster heartbeat, not a normal heartbeat, this was serious. ha ha What happened was, when I sneezed, I felt like I was stabbed in my right side, over and over again, turning that knife and twisting it, just to make sure it was in there!! OMG!!! I couldn't move, I couldn't breath..all I could do was hold my breath and pray it would go away soon. It did, but just not soon enough.
About 3 years ago, I had something like this happen, only farther up my right side. Charles took me to the ER, because we thought it was my gallbladder. It wasn't, they said. They couldn't see anything on the CT Scan, and because I had had so many abdominal surgeries, it was probably something called "adhesions". They don't like to remove them because even the removal will cause more of them...and sent me home. (after loading me up on Morphine)
I got into the Nurse Practitioner on Friday afternoon. She had a few ideas. 1. Kidney stone. 2. Appendix 3. Adensions. Plan would be check urine for blood, for kidney stones, check blood for white cells, if elevated for appendix. If both were negative, she would "hook me up with a good surgeon" to get rid of the adhesions because she feared they were attached to my bladder and intestines, and when I sneezed, (that is what I am feeling), and she was afraid it could rip my bladder or intestine.
SO, I was to call back for the "stat" order results, and the next plan at 4 p.m.
I called at 4 p.m., all was negative, I asked who the surgeon was going to be, and who was going to make the appointment, them or me? The very slow reply was.... "what are you talking about" Seems, as my luck would have it, she left for the day...oh wait, it gets better..and took some vacation days, until Monday the 14th...and didn't leave any instructions for me!!! Now, how does this lead up to the camping trip???
Our next camping trip was to start tomorrow, and end on the 14th. (are ya smiling God??)
This was supposed to be our vacation for this year because, well, because we really can't afford to go to florida this year, or Maine..get the idea? We were going to relax in lawn chairs, have a beautiful campfire, there is a really lovely beach there, take some walks. It's a beautiful place. Take some rides on the bike. Just have some fun doing whatever we wanted to do. BUT...we decided that it would be best that we stick closer to home, closer to the hospital that at least knows what 42 pills I take each day, than to risk falling and ripping something, or having that one big sneeze not knowing where we are. I have to remind myself, I am on blood thinners, and if I do rip something inside, it will bleed rather quickly.
Do you ever start to think that with the snap of your fingers, you can ruin the entire summer? I try hard to tell myself, that I really have no control over this. I don't plan it. I am sorry it happens. WHY it always happens in the summer and fall is beyond me. Why it can't happen when it's freezing outside and nobody wants to get their tired old butt up and outside anyway.
I really am grateful for everything, and everyone that I have in my life, but, it's just so frustrating to be in pain all the time, "feel" you are dependent on people, when you worked so hard to get your independence, you had so many things you wanted to do before you died, and you know in your heart that these things will never happen, now you have forgotten what they were. And then, you start to wonder why you are even here.
Then, last night, our dear friend Brenda calls us up, needing some help moving something. When we got to her house, she called me inside, so excited to show me her NEW house that SHE had just purchased. She was so proud, and I was so proud for her. She has worked SO hard to get her life back in order, and she also now has custody of her daughter. What an accomplishment! Just seeing that pride in her face was pricless. You know that feeling where your heart just swells up in your chest just watching it all?..and it sure knocked me off my pitty pot!! Thank you Brenda!!
See, I've been throwing myself one huge pitty pot. Believe me, I can have a nice one too, with every fixin available, and not invite one single fucking person. Somehow I have to see that I didn't ask to be sick. I take my medications to keep myself going. I do the things the Doctors tell me to do. I have out lived my life expectancy by years, so it is working. I probably do more damage by pushing myself sometimes because I don't want to hurt peoples feelings, or ruin others good times by being the big wuss of the group.
Acceptance. Ouch! I think I'll save that for another day...but I won't wait too long. These pitty parties are getting too expensive.
Tuesday, May 11, 2010
Giving A Name To The Hidden Secret
I got a call from my Cardiologist's nurse telling me to take off my 30 day heart monitor, and mail it back to them. It had only been 14 days, to the day. I ask her what they found out. She states, "I don't know, I was just to pass on the message to take it off and mail it back". Seriously? She has worked in Cardiology now for some time, does she not yet realize just how paranoid we get over every little change in our routines? Please!
"Could you please have him call me ASAP?"
"of course"
2 hours later, he calls, and bless his heart, talks to me for every second that I need him to, explaining every little detail that I need him to..over and over and over.
He confirms that I have Diabetic Neuropathy, he also tells me that I have "sinus tachycardia", which at that point I am thinking, "no big deal", because that just means having a fast heart beat, and we already knew that..right? Then he tells me he is sorry, that I have a "special" kind....yeah, of course I do, I always have a special kind. I have a special heart, remember. One that no one has seen before. Anyway...
I have Inappropriate Sinus Ttachycardia. (IST) Which means that when I get up to go to the bathroom, my heartbeat starts out at a normal beat, such as 68-72, then jumps to 160 before I even get to the bathroom. That explains why I am out of breath, tired, and feel like I am going to faint. My blood pressure remains at 90/50. Since I didn't do anything but sit around, go to bed, and go to the bathroom, we really have no idea what my heart rate will go up to during strenuous activity. During my bathroom trips, it was 160. (I have since counted to around 200, but losing count all the time because it's so fast, or irregular?)
I also have Dysautonomia, which I believe is about the same as the Diabetic Neuropathy. Anything that is Automatic in your body, breathing, heartbeat, digestion, body temp, circulation, etc...mine is a mess. It is no longer "auto- matic" I already take pills for my food to digest, wear a zipper hoodie all year round to take on and off quickly to regulate my body temperature, expect for the freezing hands and feet, there is nothing to be done there...sorry Charles!!, My puplis. My Eye Doctor couldn't figure out why it was so painful for me to go out into the sun..SOMETIMES. He kept testing me, and couldn't find anything wrong. Well...it seems that dilation of your pupils is another automatic thing, and sometimes one or both of mine will do it when they choose to. And when they choose not to, it's like when the Eye Doctor dilated your eyes in his office and you walk out in the sun without any sun glasses. OUCH! Breathing, there isn't anything I can do about that other than walk slowly. Being careful about doing activities after I eat. My heart rate is going to be regulated by changing my medication, again.
To give you an idea of the amount of medication I'll be taking just for my heart rate, my father just had his second open heart and he takes 10 mg of atenolol, I am now taking 100 mg of it to keep my pulse down. So far, it seems to be working better than what I was on. The main side effect I have noticed is that I am even more tired that I was before. Not pleasant. Not pleasant for others to have to deal with either.
As time goes on, there are other effect that aren't so pleasant that may pop up. My medication that I take to eat may not work any longer, so they are working on a stomach pacemaker to jolt the stomach to work. The intestines may stop working, or work TOO much, and the control of them and the bladder may be gone. Just think of everything that your body does that you don't tell it to....that is what will be effected.
How do you explain to people that a 48 yr. old women is exhausted, all the time. The savella I take is helping a great deal with the pain, so there goes that excuse to be in bed. I have no excuse but I am SO tired. By 4 p.m. I can barely keep my eyes open, by 4:30 p.m. I am asleep. By 10 p.m., I am awake and watching movies, or watching Charles sleep thinking how lucky I am that I have someone that is so supportive of me, and tries so very hard to understand what is going on. Thank God he goes into the Doctor's office with me, and asks questions so he can be just as informed as I am! How did I ever get so blessed??
I am praying that I will adjust to this medication, quickly, and will feel normal. Normal, now there is a word I don't usually use. I don't even know what it is, or what to use about myself to compare it to. It's been so many years now that "something" has been going on, I wouldn't know what normal is.
When I was pregnant with my daughter, a week before her birth I noticed my legs were huge! The next few days, I couldn't put on my shoes. The next few days, couldn't put them on even without the laces. I really didn't feel good, but I think it came up on me so slowly that I was tolerating it well enough, I didn't feel the need to go to the doctor. If I had woken up, and BAM, swollen everything and sick, it would have been a different story. The day I delivered her, I was at the hospital, walking into the ER and stopped to go into the restroom and looked into the mirror, and noticed my eyes were just slits, my face was so swollen. Why I hadn't noticed this before? Don't know. Guess maybe because I had a 5 1/2 yr old and a 10 month old..who knows, but it just hit me, I was very sick and better hurry!!
When they seen me, they all knew. My blood pressure was 220/190 and I was very sick. Padded the rails, turned off the lights for seizure precautions. Lucky for me, I have never had a labor longer than 4 hours, that being this one, and all went well. Both of us survived okay. A few weeks later, I realized how good I felt...Normal!! I also then realized just how SICK I felt as well. I had something to compare it to. It has been so long now that I don't have that feeling to compare it to now. THIS has become normal to me!
I am so sad that my sister Chris didn't have a Doctor that caught on to what she was going through. I now understand all her symptoms of not being able to breath, the horrible fatigue, her racing heartbeat, and the all over body pain. All the Doctors she went to see could not find anything wrong with her. Clear chest x ray, normal blood work..nothing. They would send her home making her feel like she was just lazy and paranoid that her cancer had come back. Nope. I don't think so. She had been diabetic about 10 years longer than I have, and on insulin alot longer as well.
Don't get me wrong. I am so happy that we finally have a name to part of what I have. There isn't a name to what is wrong with my heart. But I am sad that I couldn't get Chris to my Cardiologist sooner. We had talked on Weds night making our promise to go see my Cardiologist on the following Monday. She went into cardiac arrest the next night, and passed on that Monday. Did we wait too long? Could they have been able to do anything even if we had gone that night? I don't know...nobody does. I guess that is one answer I will never have.
"Could you please have him call me ASAP?"
"of course"
2 hours later, he calls, and bless his heart, talks to me for every second that I need him to, explaining every little detail that I need him to..over and over and over.
He confirms that I have Diabetic Neuropathy, he also tells me that I have "sinus tachycardia", which at that point I am thinking, "no big deal", because that just means having a fast heart beat, and we already knew that..right? Then he tells me he is sorry, that I have a "special" kind....yeah, of course I do, I always have a special kind. I have a special heart, remember. One that no one has seen before. Anyway...
I have Inappropriate Sinus Ttachycardia. (IST) Which means that when I get up to go to the bathroom, my heartbeat starts out at a normal beat, such as 68-72, then jumps to 160 before I even get to the bathroom. That explains why I am out of breath, tired, and feel like I am going to faint. My blood pressure remains at 90/50. Since I didn't do anything but sit around, go to bed, and go to the bathroom, we really have no idea what my heart rate will go up to during strenuous activity. During my bathroom trips, it was 160. (I have since counted to around 200, but losing count all the time because it's so fast, or irregular?)
I also have Dysautonomia, which I believe is about the same as the Diabetic Neuropathy. Anything that is Automatic in your body, breathing, heartbeat, digestion, body temp, circulation, etc...mine is a mess. It is no longer "auto- matic" I already take pills for my food to digest, wear a zipper hoodie all year round to take on and off quickly to regulate my body temperature, expect for the freezing hands and feet, there is nothing to be done there...sorry Charles!!, My puplis. My Eye Doctor couldn't figure out why it was so painful for me to go out into the sun..SOMETIMES. He kept testing me, and couldn't find anything wrong. Well...it seems that dilation of your pupils is another automatic thing, and sometimes one or both of mine will do it when they choose to. And when they choose not to, it's like when the Eye Doctor dilated your eyes in his office and you walk out in the sun without any sun glasses. OUCH! Breathing, there isn't anything I can do about that other than walk slowly. Being careful about doing activities after I eat. My heart rate is going to be regulated by changing my medication, again.
To give you an idea of the amount of medication I'll be taking just for my heart rate, my father just had his second open heart and he takes 10 mg of atenolol, I am now taking 100 mg of it to keep my pulse down. So far, it seems to be working better than what I was on. The main side effect I have noticed is that I am even more tired that I was before. Not pleasant. Not pleasant for others to have to deal with either.
As time goes on, there are other effect that aren't so pleasant that may pop up. My medication that I take to eat may not work any longer, so they are working on a stomach pacemaker to jolt the stomach to work. The intestines may stop working, or work TOO much, and the control of them and the bladder may be gone. Just think of everything that your body does that you don't tell it to....that is what will be effected.
How do you explain to people that a 48 yr. old women is exhausted, all the time. The savella I take is helping a great deal with the pain, so there goes that excuse to be in bed. I have no excuse but I am SO tired. By 4 p.m. I can barely keep my eyes open, by 4:30 p.m. I am asleep. By 10 p.m., I am awake and watching movies, or watching Charles sleep thinking how lucky I am that I have someone that is so supportive of me, and tries so very hard to understand what is going on. Thank God he goes into the Doctor's office with me, and asks questions so he can be just as informed as I am! How did I ever get so blessed??
I am praying that I will adjust to this medication, quickly, and will feel normal. Normal, now there is a word I don't usually use. I don't even know what it is, or what to use about myself to compare it to. It's been so many years now that "something" has been going on, I wouldn't know what normal is.
When I was pregnant with my daughter, a week before her birth I noticed my legs were huge! The next few days, I couldn't put on my shoes. The next few days, couldn't put them on even without the laces. I really didn't feel good, but I think it came up on me so slowly that I was tolerating it well enough, I didn't feel the need to go to the doctor. If I had woken up, and BAM, swollen everything and sick, it would have been a different story. The day I delivered her, I was at the hospital, walking into the ER and stopped to go into the restroom and looked into the mirror, and noticed my eyes were just slits, my face was so swollen. Why I hadn't noticed this before? Don't know. Guess maybe because I had a 5 1/2 yr old and a 10 month old..who knows, but it just hit me, I was very sick and better hurry!!
When they seen me, they all knew. My blood pressure was 220/190 and I was very sick. Padded the rails, turned off the lights for seizure precautions. Lucky for me, I have never had a labor longer than 4 hours, that being this one, and all went well. Both of us survived okay. A few weeks later, I realized how good I felt...Normal!! I also then realized just how SICK I felt as well. I had something to compare it to. It has been so long now that I don't have that feeling to compare it to now. THIS has become normal to me!
I am so sad that my sister Chris didn't have a Doctor that caught on to what she was going through. I now understand all her symptoms of not being able to breath, the horrible fatigue, her racing heartbeat, and the all over body pain. All the Doctors she went to see could not find anything wrong with her. Clear chest x ray, normal blood work..nothing. They would send her home making her feel like she was just lazy and paranoid that her cancer had come back. Nope. I don't think so. She had been diabetic about 10 years longer than I have, and on insulin alot longer as well.
Don't get me wrong. I am so happy that we finally have a name to part of what I have. There isn't a name to what is wrong with my heart. But I am sad that I couldn't get Chris to my Cardiologist sooner. We had talked on Weds night making our promise to go see my Cardiologist on the following Monday. She went into cardiac arrest the next night, and passed on that Monday. Did we wait too long? Could they have been able to do anything even if we had gone that night? I don't know...nobody does. I guess that is one answer I will never have.
Sunday, May 9, 2010
Happy Mother's Day
Today is Mother's day, and I hope that everyone takes advantage of taking their Mothers out, or getting her a card, or just calling her and telling her that you love her....but do something.
Today is a bitter sweet day for me. I Iost my mom when I was 12 years old, and I have missed her every single day since then. The sad part is, when you are 12 and your Mom leaves your life, you start to forget her as you get older. Oh, you see pictures of her, and you remember that is your mom, but you don't remember what she sounds like, what she smells like, her facial expressions that just a Mom makes...you know, "the look"...I have forgotten that now, and it makes me so sad.
I can never tell my Mom how sorry I am for the crazy things that a normal 12 year old does, and the things that a not so normal 12 year old does.
My Mom was sick, but I didn't realize just how sick she was, not that would forgive what I was doing. I had started smoking pot when I was 10 years old. I was writing my little school notes to my friends because I thought it was so cool that I was stoned after school, or that I was staying the night with my best friend and we were staying up late, getting stoned and watching Edgar Allen Poe movies on Friday night. My best friends Mom drank Vodka, so of course I was sneaking her vodka as well. This went on for a year before my Mom and Dad found one of my "Cool" notes, and decided to search my room.
I stood next to them, screaming how unfair it was, how they were invaiding my privacy, crying, putting on a great show...and the favorite.."it's only pot"! They found a dozen or so letters telling the stories of us camping in the backyard, sleep overs, etc....all about us getting high. My parents knew nothing about drugs, and knew even less about what to do with a 11 yr. old that used them. My poor Mother, sitting on the floor, letters covering her lap, crying, asking why her baby would use drugs. Why is it THAT memory one I can remember??
I did my plea that I would never do it again. They believed me. All was good for awhile. No, I didn't stop, I was just careful about putting things in writing....it never dawned on me my father would follow me, and watch me get high through the window of my best friends house. Horrified, humiliated, I took off running. Wow, you think your parent is old. This man could run, and run fast he did. I was barefoot, and we lived in the country, and I hit a stump in the dirt and broke my toes. I kept running but he caught me. He had me put on a nightgown, and he whipped me, and whipped me, until he couldn't whip me any longer. It's not the pain I remember...it's my Mom's crying in the next room and her begging my father to stop. That is what I remember. Did I stop smoking pot, and by now, doing other drugs and drinking more? Sad to admit, Nope!
My mother died a few months later. I was sitting on the bathroom sink blowdrying my hair, and in the mirror, I watched my father, both sets of grandparents walk in. Mom was supposed to come home. See, she went to the hospital about a week or so before. They couldn't tell she'd had a heart attack because like me, and my sisters, she didn't test positive for the blood work for having a heart attack...nothing came up positive, so they were taking to the floor where they put people who needed their gallbladders out...then something showed on ther EKG, and they realized something must be wrong, so they waited. She was 35! Then she died.
I could tell by looking at their faces she was gone. No one ever told me, they all just wanted to hug me, and then they all started crying, and crying, and talking like I wasn't there, about sending me to the Sisters and letting me go to school with the church.
I went to my sisters and held on to them, not wanting to be sent away to school. I told the middle one of us, that I never got to tell Mom I was sorry for what I had done, and maybe she had a heart attack because of me and what I had been doing. She kept telling me it wasn't me. My sisters promised me that they wouldn't leave me....they both have since gone.
So, the moral of this story is. Back then, no mother ever died of a heart attack at age 35. Life is so very short, and you never know when someone you love so dearly is going to be gone. Don't let some little fight that doesn't mean a thing come between you, because you could wake up the next morning, and not be able to say you are sorry! NEVER be able to say you are sorry. This is something that you carry with all your life, and wow, talk about the hardest thing to forgive yourself for.
Happy Mother's Day!! To the new Mothers, Old Mothers, GrandMothers...ALL Mothers. Celebrate them, Love them, Most of all, forgive them, because you will miss them when they are gone! So, when you go out to eat today, look across that table and count all your blessings that you CAN still look into her eyes and tell her....I LOVE YOU!
Today is a bitter sweet day for me. I Iost my mom when I was 12 years old, and I have missed her every single day since then. The sad part is, when you are 12 and your Mom leaves your life, you start to forget her as you get older. Oh, you see pictures of her, and you remember that is your mom, but you don't remember what she sounds like, what she smells like, her facial expressions that just a Mom makes...you know, "the look"...I have forgotten that now, and it makes me so sad.
I can never tell my Mom how sorry I am for the crazy things that a normal 12 year old does, and the things that a not so normal 12 year old does.
My Mom was sick, but I didn't realize just how sick she was, not that would forgive what I was doing. I had started smoking pot when I was 10 years old. I was writing my little school notes to my friends because I thought it was so cool that I was stoned after school, or that I was staying the night with my best friend and we were staying up late, getting stoned and watching Edgar Allen Poe movies on Friday night. My best friends Mom drank Vodka, so of course I was sneaking her vodka as well. This went on for a year before my Mom and Dad found one of my "Cool" notes, and decided to search my room.
I stood next to them, screaming how unfair it was, how they were invaiding my privacy, crying, putting on a great show...and the favorite.."it's only pot"! They found a dozen or so letters telling the stories of us camping in the backyard, sleep overs, etc....all about us getting high. My parents knew nothing about drugs, and knew even less about what to do with a 11 yr. old that used them. My poor Mother, sitting on the floor, letters covering her lap, crying, asking why her baby would use drugs. Why is it THAT memory one I can remember??
I did my plea that I would never do it again. They believed me. All was good for awhile. No, I didn't stop, I was just careful about putting things in writing....it never dawned on me my father would follow me, and watch me get high through the window of my best friends house. Horrified, humiliated, I took off running. Wow, you think your parent is old. This man could run, and run fast he did. I was barefoot, and we lived in the country, and I hit a stump in the dirt and broke my toes. I kept running but he caught me. He had me put on a nightgown, and he whipped me, and whipped me, until he couldn't whip me any longer. It's not the pain I remember...it's my Mom's crying in the next room and her begging my father to stop. That is what I remember. Did I stop smoking pot, and by now, doing other drugs and drinking more? Sad to admit, Nope!
My mother died a few months later. I was sitting on the bathroom sink blowdrying my hair, and in the mirror, I watched my father, both sets of grandparents walk in. Mom was supposed to come home. See, she went to the hospital about a week or so before. They couldn't tell she'd had a heart attack because like me, and my sisters, she didn't test positive for the blood work for having a heart attack...nothing came up positive, so they were taking to the floor where they put people who needed their gallbladders out...then something showed on ther EKG, and they realized something must be wrong, so they waited. She was 35! Then she died.
I could tell by looking at their faces she was gone. No one ever told me, they all just wanted to hug me, and then they all started crying, and crying, and talking like I wasn't there, about sending me to the Sisters and letting me go to school with the church.
I went to my sisters and held on to them, not wanting to be sent away to school. I told the middle one of us, that I never got to tell Mom I was sorry for what I had done, and maybe she had a heart attack because of me and what I had been doing. She kept telling me it wasn't me. My sisters promised me that they wouldn't leave me....they both have since gone.
So, the moral of this story is. Back then, no mother ever died of a heart attack at age 35. Life is so very short, and you never know when someone you love so dearly is going to be gone. Don't let some little fight that doesn't mean a thing come between you, because you could wake up the next morning, and not be able to say you are sorry! NEVER be able to say you are sorry. This is something that you carry with all your life, and wow, talk about the hardest thing to forgive yourself for.
Happy Mother's Day!! To the new Mothers, Old Mothers, GrandMothers...ALL Mothers. Celebrate them, Love them, Most of all, forgive them, because you will miss them when they are gone! So, when you go out to eat today, look across that table and count all your blessings that you CAN still look into her eyes and tell her....I LOVE YOU!
Monday, April 26, 2010
A Complete Different Story
I guess I can stare at this blank white screen for a few more days, but nothing is going to get told unless I start typing. I am still not quite sure what to say, see now that I know people are reading this, this blog takes on a complete different identity.
I started this blog to give me some where to dump all my thoughts and feelings, just to be able to get them outside of myself and if they were able to help a stranger...got that...a STRANGER, then fantastic, but now, I have friends and family, and even more so, Charles reading it. So, as I am typing, I seem to catch myself in not wanting to upset him, or not wanting to make him worry more than he already does. Life living with me, not so easy, and it takes a lot of strength being here day after day with me, never knowing what is going to happen.
Well, after our Doctors trip last week, we have now added to that stress. I came home with a heart monitor that I have to wear for the next 30 days. This one is a bit different than the ones I have had over the years. After I have one of my "episodes", or actually while I am having one, I put a "record" button, wait for the beeps, and then call the 800 number and then "send" the recording to "them", who will keep track of all the recordings, and they will send the recordings to my cardiologist.
What my cardiologist is looking for is a "real" irregular heart beat, not like the one that I have, which is just an extra one now and then - - sometimes a few right in a row, which takes your breath away. I think the most it will do is cause you to pass out, which then you will breath again. I kind of compare it to when a child threatens to hold their breath to get their way. "go ahead" The worse they will do is bump their head when they fall down. Same here. Your body has certain mechanisms that it does automatically, such as breathing, heart beating,etc.. which brings me to what is probably the real problem with me, as least what my cardiologist is guessing it is.
Autonomic Neuropathy. (different varieties) My cardiologist seems to think this is the real culprit. This is very common in Diabetics. I keep telling myself, I have only been Diabetic for 12 years now, and I never thought mine was that out of control, but nothing about this body seems to follow the path of normalacy.
The things your body does without being told, digesting food, breathing, heart beating, puplis dialating, body temperature, are a few of the things that are not working on me any more. I have to take pills to get my stomach to digest my food now, and have looked into pace makers that are actually implanted in your stomach that tell your stomach to work when it is signaled by the food. My heart rate jumps up to 130 or higher when I am up walking, or moving around. I couldn't imagine if I ran or did some type of exercise. I already take 3 types of heart medications, which obviously don't keep my pulse down unless I am sitting down or in bed. I am out of breath and exhausted most of the time, which I am guessing is because my heart is beating so fast all the time, and it's trying to keep oxygen everywhere it needs to, and it gets tired as well. My body temperature is much lower than normal, my hands and legs are always cold, which could explain why they are always in such throbbing pain. My puplis I didn't realize was caused by this until now. I have had a lot of problems with pain in my eyes when I am outside. No one seemed to know the cause, the eye doctor just told me to where darker sun glasses, and bigger ones that wrap around so the sun doesn't get in.
The list can go on and on...and from what I understand, it will. I am caught between it's nice knowing, finally knowing what this all is, to, Oh Shit...THIS is what I have? I told my cardiologist I really haven't had that many episodes, but now that I have to call them in, I'm having about 3 per day. A lot more than I realized. It's like keeping a food journal. You don't realize how many bites of cake you really were sneaking until you got honest and wrote it all down. Now that I have to tell someone every time, I have to get honest with myself on how often these are actually occuring.
I have been in bed or on the couch since we returned from the Doctor. I am exhausted. Oh, I have done little things around the house, showered, some laundry, but after everything I do, I am out of breath and so tired, and head straight back to the couch or bed. It's been raining, so I am glad I have had an excuse not to go anywhere, and the Bike has remained in the garage.
I don't know if this is depression? Is it relief of finally, someone gets it and now I can take a break? Is it just in my head because there is relief of FINALLY someone gets it, or I am just exhausted from having so many episodes? I really don't know, and I don't know if it's important or not. What is important is, where do we go from here?
There is no cure. It is progressive. How progressive it gets, I really don't know. But, instead of writing down ALL those diagnoses, now can I just write down ONE??
I started this blog to give me some where to dump all my thoughts and feelings, just to be able to get them outside of myself and if they were able to help a stranger...got that...a STRANGER, then fantastic, but now, I have friends and family, and even more so, Charles reading it. So, as I am typing, I seem to catch myself in not wanting to upset him, or not wanting to make him worry more than he already does. Life living with me, not so easy, and it takes a lot of strength being here day after day with me, never knowing what is going to happen.
Well, after our Doctors trip last week, we have now added to that stress. I came home with a heart monitor that I have to wear for the next 30 days. This one is a bit different than the ones I have had over the years. After I have one of my "episodes", or actually while I am having one, I put a "record" button, wait for the beeps, and then call the 800 number and then "send" the recording to "them", who will keep track of all the recordings, and they will send the recordings to my cardiologist.
What my cardiologist is looking for is a "real" irregular heart beat, not like the one that I have, which is just an extra one now and then - - sometimes a few right in a row, which takes your breath away. I think the most it will do is cause you to pass out, which then you will breath again. I kind of compare it to when a child threatens to hold their breath to get their way. "go ahead" The worse they will do is bump their head when they fall down. Same here. Your body has certain mechanisms that it does automatically, such as breathing, heart beating,etc.. which brings me to what is probably the real problem with me, as least what my cardiologist is guessing it is.
Autonomic Neuropathy. (different varieties) My cardiologist seems to think this is the real culprit. This is very common in Diabetics. I keep telling myself, I have only been Diabetic for 12 years now, and I never thought mine was that out of control, but nothing about this body seems to follow the path of normalacy.
The things your body does without being told, digesting food, breathing, heart beating, puplis dialating, body temperature, are a few of the things that are not working on me any more. I have to take pills to get my stomach to digest my food now, and have looked into pace makers that are actually implanted in your stomach that tell your stomach to work when it is signaled by the food. My heart rate jumps up to 130 or higher when I am up walking, or moving around. I couldn't imagine if I ran or did some type of exercise. I already take 3 types of heart medications, which obviously don't keep my pulse down unless I am sitting down or in bed. I am out of breath and exhausted most of the time, which I am guessing is because my heart is beating so fast all the time, and it's trying to keep oxygen everywhere it needs to, and it gets tired as well. My body temperature is much lower than normal, my hands and legs are always cold, which could explain why they are always in such throbbing pain. My puplis I didn't realize was caused by this until now. I have had a lot of problems with pain in my eyes when I am outside. No one seemed to know the cause, the eye doctor just told me to where darker sun glasses, and bigger ones that wrap around so the sun doesn't get in.
The list can go on and on...and from what I understand, it will. I am caught between it's nice knowing, finally knowing what this all is, to, Oh Shit...THIS is what I have? I told my cardiologist I really haven't had that many episodes, but now that I have to call them in, I'm having about 3 per day. A lot more than I realized. It's like keeping a food journal. You don't realize how many bites of cake you really were sneaking until you got honest and wrote it all down. Now that I have to tell someone every time, I have to get honest with myself on how often these are actually occuring.
I have been in bed or on the couch since we returned from the Doctor. I am exhausted. Oh, I have done little things around the house, showered, some laundry, but after everything I do, I am out of breath and so tired, and head straight back to the couch or bed. It's been raining, so I am glad I have had an excuse not to go anywhere, and the Bike has remained in the garage.
I don't know if this is depression? Is it relief of finally, someone gets it and now I can take a break? Is it just in my head because there is relief of FINALLY someone gets it, or I am just exhausted from having so many episodes? I really don't know, and I don't know if it's important or not. What is important is, where do we go from here?
There is no cure. It is progressive. How progressive it gets, I really don't know. But, instead of writing down ALL those diagnoses, now can I just write down ONE??
Thursday, April 22, 2010
We Are On Our Way...Well Sort Of.
Today is the day. Another day at my Cardiologist. Sorry if it sounds so doom and gloom. Actually, I love the guy. We figure if it wasn't for him, and the cardiac surgeon, I wouldn't be here today. We met on funny circumstances.
I was referred to a cardiologist in a different town that offered to do a stress test, "just to see", because of my family history. It came back.."possible blockage, could redo in 6-12 months". When Charles and I met with him to get the results, he could tell we were concerned, considering my sister passed her stress test 100%, and had a heart attack a few month later at age 28. So, he decided to leave it up to us, to either follow their recommendations, or go to a different Doctor and get a heart cath. You can see what we choose.
My entire family showed up for the heart cath. We are all shown into the room, and we wait. The clinic there, all the room are in a circle, so you can watch all the people, patient and doctors go around the circle, going into each room, telling people their fate for the day. Well, in walks our Doctor, well we thought he was. He stops and stares at all of us, finally gets to me, you know the naked one under the flimsy little gown...the excuses himself telling us that he had the wrong room. We all go back to our conversation, but I heard someone say my name out in the hallway. Again, in walks the same doctor, this time, just peeking his head in and walking out. I knew he was looking for me. Just a minute later, he walked in and asked which one of us was Carla..ummmm, the flimsy gown wasn't giving this answer away?? He told us he was sorry he was 1. Late, and 2. Kept coming into our room, but after looking at the test, he expected a women about 75 -80 years old, and that surely was not me.
This new cardiologist, well, putting it nicely, didn't have one ounce of sense of humor in his entire body. None!
While I am on the gurney waiting to go into sugergy, he informs me that he studied the stress test and he feels there is absolutely nothing wrong with my heart and women with "large chests" often have this type of blockage show up on this type of stress test. YEAH...we all look at eachother, and my sister and I make some reference to each other about how these babies are great for some things...the doc, not even a smile, comment,... nothing. He finally starts to walk out. I tell him I want to remain awake so I can watch. (I know, alittle sick, but I wanted to see what it looked like) He tells me no, I say yes...you get the picture...I won. My family and I then decided to start calling him "Dr Smiley", actually so much so, that I forgot his name.
In the operating room, everything is going great, and he keeps saying, "ok", "fine", "ok"..then here comes the famous, "Oh shit"....I said, "hey, remember I am awake under here." All I got out of it, is "yes Carla, you have the same disease your mom and sister died from." and he left. The nurses held me while I cried, uncontrollably, and the rest of them cleaned me up. I tried to yell at him to not tell my family, but he couldn't hear me. Maybe he wouldn't be so blunt...maybe.
Back then, they literally put this clamp on you after a heart cath, that went under your butt, then covered your hip and squeezed the hole where the cath went in and up into your heart to inject the dye. You had to lay still for 4-6 hours, and your head had to remain flat. Not my idea of fun, but it's needed. (much easier now) While they are getting me into position and "clamped", I see my sister coming down the hall, and her face is all red, with swollen eyes, and then Charles next, tears running down his face, my parents behind them. He obviously told them, and knowing Dr. Smiley as I have come to know, he wasn't gentle.
It wasn't just HOW he told them, but what he told them. He informed Charles that I needed to get a Will, and sign a Power of Attorney, NOW, because I wasn't going to be here very long, and yes, I did have the same heart disease that killed my sister and mother. When they pressed him for a time limit, all they got was maybe to the end of the year. This was Feb. 2003. He also didn't want me to leave the hospital without having an Open Heart the next day, and that wasn't a promise that was going to extent my life, but he felt I shouldn't leave. At this hospital, everything is done by "team" effort, so he would present it, and let us know later. I wasn't doing anything for the next 6 hrs. other than laying flat with a clamp on my hip....and thinking!
We didn't realize those 6 hours would seem like an eternity with all of us there being able to entertain eachother, and we figured the news would come quickly. It didn't. And, after 6 hours, we weren't able to entertain eachother any longer either. The news of me dying was starting to settle in, and it was hitting all of us hard. My father was not wanting to bury another daughter, and my sister didn't want to bury another sister. Charles, he could barely talk. Every time we looked at eachother, we would start crying, so we just sat there holding on to eachother hands, and rubbing eachothers backs, but never letting go of one another. Little did we know at that time, it was the wrong sister that we were going to bury. Anyway, it didn't come until after they took the clamp off because they couldn't agree. The surgeon did not want to do it, and he was the only one that was voting no. I decided to go home. I needed to do my Will and give Charles my Power of Attorney before I would do the Open Heart anyway.
April 1 2003, I called and my Doctor was on vacation, but his wonderful nurse took my call, I told her I couldn't breath, couldn't walk to the bathroom without stopping and holding on. April 3, 2003, I was in the hospital having my Open Heart. The surgeon told Charles and I before the operation that he still didn't feel I would need it going by the cath. There were 3 smaller blockages. Charles left it up to me, and I told me I wanted the surgery, everything inside my chest hurt, I couldn't breath, and I "knew" something was wrong. I hated putting him through this, but I felt the alternative was worse.
When they came out of surgery, they told me I was ready to die. I had 4 huge blockages, and the smallest arteries they had ever had there. My surgeon told me later that he had only seen one other person with arteries like mine in his 25 yr career as a heart surgeon. I got excited because I though I had something in common with someone and we could tell stories to eachother. Nope, she died years ago, actually one year after her open heart. Not the odds I was wanting to hear. My heart surgeon was moving away, and hugged me telling me it was a pleasure to know me and wished me the best of luck, and he would call now and then to see how I was doing. (ahhhh, made me cry) He gave me permission, 4 weeks after my surgery to go to South Dakota on a trip with Charles for a job. Ahhhh, the life, relaxing in a hotel room after open heart. What a way to recuperate. :)
My cardiologist came back from vacation and was a new man. He actually smiled at me!!! I told him some jokes...you know the one about how God knows he isn't a cardiologist??? I thought the nurse was going to need to have CPR right then and there . But, he laughed. Later, she came back in the room and told me she didn't know what I had done to him, but he didn't act that way to other patients. I told her maybe she should tell them that joke. Now, we get along great. I adore him, and give him all the credit in the world for me being here, and tell anyone that I can what a fantastic doctor he is, even if he doesn't smile for awhile. (Oh, I remember his name now) A year or so ago, I had to call him, and he called me back and told me he was so glad to hear from me, because he was afraid to call me, he was afraid I had died!
SO, 7 years later, and I am on my way again to go visit him. I usually pack a little bag. You know that little, just in case bag. If they do an EKG and something comes up from all the chest pain I have had, or because of the 130 pulse I've been having - - but has gotten better this past week, and they decide they want me to stay, I'll be ready. Well, they have never asked me to stay, so I continue to take it as my, "insurance". Today, I haven't packed one. Am I testing fate? Or am I going by my own intuition that I know I am truly okay, so I don't need this bag? I guess I will know the answer in a few hours, because ...here we go..............
Nope...can't do it...taking my bag...just can't play with this....it's a small bag, but still a bag. :) Life is good, why test it?
I was referred to a cardiologist in a different town that offered to do a stress test, "just to see", because of my family history. It came back.."possible blockage, could redo in 6-12 months". When Charles and I met with him to get the results, he could tell we were concerned, considering my sister passed her stress test 100%, and had a heart attack a few month later at age 28. So, he decided to leave it up to us, to either follow their recommendations, or go to a different Doctor and get a heart cath. You can see what we choose.
My entire family showed up for the heart cath. We are all shown into the room, and we wait. The clinic there, all the room are in a circle, so you can watch all the people, patient and doctors go around the circle, going into each room, telling people their fate for the day. Well, in walks our Doctor, well we thought he was. He stops and stares at all of us, finally gets to me, you know the naked one under the flimsy little gown...the excuses himself telling us that he had the wrong room. We all go back to our conversation, but I heard someone say my name out in the hallway. Again, in walks the same doctor, this time, just peeking his head in and walking out. I knew he was looking for me. Just a minute later, he walked in and asked which one of us was Carla..ummmm, the flimsy gown wasn't giving this answer away?? He told us he was sorry he was 1. Late, and 2. Kept coming into our room, but after looking at the test, he expected a women about 75 -80 years old, and that surely was not me.
This new cardiologist, well, putting it nicely, didn't have one ounce of sense of humor in his entire body. None!
While I am on the gurney waiting to go into sugergy, he informs me that he studied the stress test and he feels there is absolutely nothing wrong with my heart and women with "large chests" often have this type of blockage show up on this type of stress test. YEAH...we all look at eachother, and my sister and I make some reference to each other about how these babies are great for some things...the doc, not even a smile, comment,... nothing. He finally starts to walk out. I tell him I want to remain awake so I can watch. (I know, alittle sick, but I wanted to see what it looked like) He tells me no, I say yes...you get the picture...I won. My family and I then decided to start calling him "Dr Smiley", actually so much so, that I forgot his name.
In the operating room, everything is going great, and he keeps saying, "ok", "fine", "ok"..then here comes the famous, "Oh shit"....I said, "hey, remember I am awake under here." All I got out of it, is "yes Carla, you have the same disease your mom and sister died from." and he left. The nurses held me while I cried, uncontrollably, and the rest of them cleaned me up. I tried to yell at him to not tell my family, but he couldn't hear me. Maybe he wouldn't be so blunt...maybe.
Back then, they literally put this clamp on you after a heart cath, that went under your butt, then covered your hip and squeezed the hole where the cath went in and up into your heart to inject the dye. You had to lay still for 4-6 hours, and your head had to remain flat. Not my idea of fun, but it's needed. (much easier now) While they are getting me into position and "clamped", I see my sister coming down the hall, and her face is all red, with swollen eyes, and then Charles next, tears running down his face, my parents behind them. He obviously told them, and knowing Dr. Smiley as I have come to know, he wasn't gentle.
It wasn't just HOW he told them, but what he told them. He informed Charles that I needed to get a Will, and sign a Power of Attorney, NOW, because I wasn't going to be here very long, and yes, I did have the same heart disease that killed my sister and mother. When they pressed him for a time limit, all they got was maybe to the end of the year. This was Feb. 2003. He also didn't want me to leave the hospital without having an Open Heart the next day, and that wasn't a promise that was going to extent my life, but he felt I shouldn't leave. At this hospital, everything is done by "team" effort, so he would present it, and let us know later. I wasn't doing anything for the next 6 hrs. other than laying flat with a clamp on my hip....and thinking!
We didn't realize those 6 hours would seem like an eternity with all of us there being able to entertain eachother, and we figured the news would come quickly. It didn't. And, after 6 hours, we weren't able to entertain eachother any longer either. The news of me dying was starting to settle in, and it was hitting all of us hard. My father was not wanting to bury another daughter, and my sister didn't want to bury another sister. Charles, he could barely talk. Every time we looked at eachother, we would start crying, so we just sat there holding on to eachother hands, and rubbing eachothers backs, but never letting go of one another. Little did we know at that time, it was the wrong sister that we were going to bury. Anyway, it didn't come until after they took the clamp off because they couldn't agree. The surgeon did not want to do it, and he was the only one that was voting no. I decided to go home. I needed to do my Will and give Charles my Power of Attorney before I would do the Open Heart anyway.
April 1 2003, I called and my Doctor was on vacation, but his wonderful nurse took my call, I told her I couldn't breath, couldn't walk to the bathroom without stopping and holding on. April 3, 2003, I was in the hospital having my Open Heart. The surgeon told Charles and I before the operation that he still didn't feel I would need it going by the cath. There were 3 smaller blockages. Charles left it up to me, and I told me I wanted the surgery, everything inside my chest hurt, I couldn't breath, and I "knew" something was wrong. I hated putting him through this, but I felt the alternative was worse.
When they came out of surgery, they told me I was ready to die. I had 4 huge blockages, and the smallest arteries they had ever had there. My surgeon told me later that he had only seen one other person with arteries like mine in his 25 yr career as a heart surgeon. I got excited because I though I had something in common with someone and we could tell stories to eachother. Nope, she died years ago, actually one year after her open heart. Not the odds I was wanting to hear. My heart surgeon was moving away, and hugged me telling me it was a pleasure to know me and wished me the best of luck, and he would call now and then to see how I was doing. (ahhhh, made me cry) He gave me permission, 4 weeks after my surgery to go to South Dakota on a trip with Charles for a job. Ahhhh, the life, relaxing in a hotel room after open heart. What a way to recuperate. :)
My cardiologist came back from vacation and was a new man. He actually smiled at me!!! I told him some jokes...you know the one about how God knows he isn't a cardiologist??? I thought the nurse was going to need to have CPR right then and there . But, he laughed. Later, she came back in the room and told me she didn't know what I had done to him, but he didn't act that way to other patients. I told her maybe she should tell them that joke. Now, we get along great. I adore him, and give him all the credit in the world for me being here, and tell anyone that I can what a fantastic doctor he is, even if he doesn't smile for awhile. (Oh, I remember his name now) A year or so ago, I had to call him, and he called me back and told me he was so glad to hear from me, because he was afraid to call me, he was afraid I had died!
SO, 7 years later, and I am on my way again to go visit him. I usually pack a little bag. You know that little, just in case bag. If they do an EKG and something comes up from all the chest pain I have had, or because of the 130 pulse I've been having - - but has gotten better this past week, and they decide they want me to stay, I'll be ready. Well, they have never asked me to stay, so I continue to take it as my, "insurance". Today, I haven't packed one. Am I testing fate? Or am I going by my own intuition that I know I am truly okay, so I don't need this bag? I guess I will know the answer in a few hours, because ...here we go..............
Nope...can't do it...taking my bag...just can't play with this....it's a small bag, but still a bag. :) Life is good, why test it?
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