VAD CAD Club

Lisa's Story

Hi Everyone!

My name is Lisa and I am a 42 year old.
I do not suffer from high blood pressure, nor do I have high cholesterol.
In fact, my doctors say that my HDL and LDL are SO good that they have never seen anything that good before. So, I have no reason to have any of the problems that I do.

How it all happened

Here is my story and I know that I am long winded, but I hope the group will forgive me. I promise to ATTEMPT to be humorous (hopefully I will not offend anyone as I have a rather "offbeat" sense of humor.

In August of 2000, I was walking down the hall of my home in route to my parents room (they both live with myself and my husband). I had a glass of ice water in my hand. I get into their room, open my mouth to speak to them, and the next thing that I know is that I am on all fours trying to pick up the ice cubes. My mother said I turned totally white and hit the floor. My mother came over to me as I was picking up the ice cubes and she literally (she is 79) picked me up/dragged me to my room and put me on my bed. I was dressed in shorts and a shirt and at this point they were completely soaked through with sweat. My mother assumed that I was having a heart attack. She called 911. I managed to get downstairs before the EMT arrived. I had to go the bathroom twice because my bowels "cut loose." The EMT arrived and they took my BP and it was 80/50. They did their thing and off I go to the hospital.

Off to Hospital

At the hospital, the doctors said that I had only had a "vagal vagus" episode - even though I told them that I have NEVER fainted in my life. I did not have a headache but kept feeling like I was going to pass out. They gave me lots of IV's to "pump" up the volume of my blood and kept checking my BP and EKG read-out. My BP went up to 90/60 and they stated that I had "stabilized" and discharged me 4 hours later. So, I get home (my husband was out of town on business) and my parents were, of course, worried about me.

Next morning I felt rather odd - I can't put it into words - just not myself. I called my Family Practice physician and explained to her what had happened and she said to just "come in now." She does her work-up and at this point my left eye is droopy and watering, and when she tells me to thrust my tongue to the left side of my cheek and hold it while she applied pressure to the outside of the cheek. I could not keep my tongue there with the pressure that she applied. She said that she wants and immediate MRI/MRA done. So, off I go to get this. They were unable to get me in until later that evening.

The next morning came and my doctor called me and told me that she had some news for me and for me not to get "upset." She is my physician and also my friend and she knew me well enough to "not sugar coat" her information. I had a stroke in my brainstem and in my cerebellum. My Middle Cerebral Artery was totally occluded. She had already contacted the finest neurosurgeon in our area and made an appointment with him that very morning. My husband arrived home and off we went to the Neurosurgeon. (Nothing says lovin' like coming home from a business trip and greeting your spouse with, "Hi, honey. I've got a little problem......." The Neurosurgeon examined me and looked at the MRI/MRA's and said that I needed to be admitted. However, there was no room at the hospital just then and I would need to wait until a bed became available. My neuro wanted me on the Neurology floor and the only beds were in other areas of the hospital. So, there I am with a totally upset husband and being told there are no rooms available at this moment. I found the whole thing rather humorous at this point. I asked the doctor if I was in danger of "dropping dead at the moment" and he said no but that my situation was unstable. I was like, look, I'm starving and if I am not going to die immediately I wanted to get something to eat. So, off we go to eat.

My husband was totally freaked out by now and he just kept asking, "How do you feel?" I was consoling him and quite frankly I was not "all weirded out" at all. Anyway, FINALLY we get a bed and by this time it is like 7PM at NIGHT. The nurses on the neurology floor were totally AWESOME. Finally, I am able to convince my husband to GO HOME and chill out. About the time he leaves, his boss and her wife burst into my room and the first words out of their mouth is "We thought you had a stroke??!!" That was the funniest part of the whole day - what did they expect - to get to have the first look at a vegetable?? People can be really DUMB.

The next day after much labwork, meeting with Cardiology, Rheumatology, Neurology and Neurosurgery - a plan of action is in place. I am to have a angiogram of my brain - Husband is still highly concerned, especially after I had to explain to him what will happen during the procedure. Off I go for the angiogram and I meet the Radiologist who is just wonderful. I told them that I will DEFINITELY need more meds to "consciously sedate" me that they usually give because I am resistive to medication. He ASSURES me that the dosage they give will be just fine. I won't lie - I was scared at this point as they placed me on that table. They let me keep my glasses on so that I could watch the monitor - that helped SO much. I hear them talking, but I feel no pain, however they did have to increase the dosage as they went along. I am doing great - watching the monitor - and talking with the radiology staff. All of a sudden I feel like someone shot me in the back of the head with a shotgun - I could hear myself scream (like it was far away and not me). The "head" radiologist yells, "Heparin 5000 units - and then yells again "Heparin 5000 units more" - "Get Procardia in her mouth." I swear to you, I was calm as can be - mainly because my husband told me before this test that if ANYTHING goes wrong I promise you that you will not be alone and you will not be afraid. How right he was. I was not alone. I remember telling the radiology team, "Yeah, yeah, you guys said this was a walk in the park"- and I laughed. The radiologist got a bit terse with me and told me to be quiet - I actually heard fear in his voice. What didn't know was that I suffered 2 strokes during this test but they were able to dissolve them with the HIGH doses of heparin. The vessels in my brain actually clamped shut when the dye was injected and did not resolve until 30 minutes later. All the while, the Neurologist was in close contact with the radiology team.

I was taken to recovery and this member of the radiology team, bless his heart, had to apply pressure to my groin where the catheter was inserted for over 4 hours - I am not joking. He happened to be black and I just had to joke with him and say "Hey, never had a black guy holding my groin before!" He had the same sense of humor as I do and for four hours all we did was laugh. The head radiologist came in and said that he had never seen anything like it and that he was so glad that he didn't have his usual second cup of coffee that morning. Finally, I get back to my room and they are trying to get the sandbag on my incision. However, when they moved me from the recovery room gurney to my bed I began to bleed once again. So, here comes my buddy from radiology to hold the groin area once more. My husband was waiting for me when I got back to my room and he is definitely not one for blood and gore - but he stuck it out with me during the next 2 hours - Finally I stopped bleeding. I was every color of the rainbow the next day from the groin to the knee.

The next day comes and I get another fun test - Nothing like a camera shoved down your mouth. Got sedated again - got to wear my glasses - got to watch a tube go down my throat and check out the condition of my heart. I remember seeing the screen and seeing my heart pumping but I don't remember any pain. The cardiologist is a good man. More lab work, etc.

During the night I get this unbelievable pain in the left neck and they do a stat MRI on my vertebrals. I am told that I cannot swallow while this test is being done. So I am quickly thinking of how in the hell am I going to be in the MRI tube for God knows how long and not swallow. I told them to take a towel to one side of my face so that if I drool I will not slime myself or the tube. Mission accomplished! They said they had never seen a vertebral MRI that clearly before. Unfortunately, now on top of the 2 strokes (brainstem & cerebellum) and 2 strokes during the angiogram I am now the proud owner of a vertebral and carotid dissection. I am planning my escape at this point - like dude, am I getting out of here in one piece??? Also, was informed that they found renal vasculitis (angiogram does the brain, kidney, etc.) and a small aneurysm on one of the poles of the kidney. Vasculitis - hubby asked me about that one - I lied and said "It' s nothing." He didn't believe me and went home and hit the internet (damn that internet!) and came to the hospital the next day and was rather peeved at me for lying. Oh, well, like he needed more crap to worry about. (Docs are watching me for any sign of recurrent vasculitis at this time - vasculitis of the brain has not been ruled out)

I got to spend 2 weeks in the hospital - got poked and prodded - had so many shots in the behind for pain (from the strokes/dissections, etc.) along with my colorful leg I had two colorful cheeks! HA! They had tested me for EVERY possible disease, hypercoagulation disorder, etc. The conclusion was that they had never seen ANYTHING like what I have.

How I Feel Now

Now for the current situation - after coming home I suffered panic attacks (felt like my heart was going to explode). It is a residual effect from the strokes. This took approximately 4 months to resolve. I was prescribed Ativan. Yes, I wet the bed several times - Hey let's go buy some of those adult diapers and run into people we know at the checkout counter! I got lost in town - had to call my husband on the cell phone, "Honey, it's me. If I give you landmarks can you get me home?" Got lost in the house a few times (now that was funny). Had a heck of time remembering my computer programs, etc. I would sit down at the terminal and my mind was go off in never never land. My concentration and understanding were awful - They have only RECENTLY come close to normal. However, sometimes, when I am working with technical or financial information I have stared at it for hours and not even realized that I had not accomplished a darn thing.

My blood was very unresponsive to Coumadin - it must be some thick blood! They have had to really work hard in regulating my dosage - I take 13 mg Coumadin each night and the BEST my INR has EVER been is 2.3. Most of the time it hovers around 1.9. My neurologist says that NO WAY is he going to increase that stuff any more - He told me that anyone else on that high of a dose would have bled out! (Hey, at least all of them have a twisted sense of humor - I can live with that!)

Headaches ( Feeling like my ENTIRE head is in a vice, sore areas on the head - locations changed daily, fullness, tightness - Basically my entire head hurt in a way that was overwhelming) began in January (4 months after stroke). Nubain injections helped tremendously - but I was needing them every month or even twice a month. My family doc has referred me to a Pain Specialist/Anesthesiologist was has put me on Neurontin and Imiprimine. SEEMS to be helping - I am very cautious in saying that it has solved the problem because I know that when younger people have strokes, the brain chemistry is altered. The meds I take for headache may work now but will they work later? - due to the changing chemistry of the brain. Went to Emory University for a second opinion in March of 2001. Neurologist there stated that he has seen cases exactly like mine - but that there is no explanation as to the cause. Mostly this type of middle cerebral artery occlusion occurs with drug users and diabetics. Since I don't fit into that category I fit into the category of UNKNOWN CAUSE. He also explained to me that when the brain "reroutes" itself - chronic headaches are very common. He said that I should be glad that I get them because my brain is making collaterals to compensate for the occlusion. He also stated that I have a block in the internal carotid where it makes its first petrous turn.

So, what is my prognosis?? It is fair. I am lucky to be alive because having a stroke in the brainstem is usually the kiss of death. This is a condition that I will have for my entire life. How long will I live? Who knows? However, my doctors are wonderful and exceptionally motivated to help me in any way. My Family Practice doctor (my friend) has put a lot of her "own" time into gathering any new information as have I. When I need to see them - they know that I don't cry wolf - they work me in - with no problem.

The Pain Specialist is considering putting botulism injections in my head in the future if the headaches remain. Also, he has put pain blocker shots in my head (in the temples, shoulder area, back of head) and I have gotten relief. So, I have headaches - so what? - that is the ONLY chronic problem the strokes and all left me. Some days are hell - some days are heaven. I go with the flow. When I am totally overwhelmed I just hug on my mother or my husband and they just let me BE - They can't take it from me - They just hold me and that is more than enough.

I don't know if this information has helped anyone or not. I hope so. I hope that you do see the comedy in this little narrative and get a chuckle here and there. Hey, life is certainly a comedy of errors! If I offended anyone by anything that I said - believe me - I didn't mean to.

Respectfully,
Lisa


VAD Club - Members Page

Andrea	Anneke Howie	Becky Scano	David Macdonald	Gay Alford

Janet Leblond	Karen Marshall	Kristi O'Donnell	Lisa	Mike Tallinger

Pradeep Pushpavanam	Ralph Stalnecker	Richard Lau	Shawn Jennings	Smita Kana

Lisa's Story Hi Everyone! My name is Lisa and I am a 42 year old. I do not suffer from high blood pressure, nor do I have high cholesterol. In fact, my doctors say that my HDL and LDL are SO good that they have never seen anything that good before. So, I have no reason to have any of the problems that I do. How it all happened Here is my story and I know that I am long winded, but I hope the group will forgive me. I promise to ATTEMPT to be humorous (hopefully I will not offend anyone as I have a rather "offbeat" sense of humor. In August of 2000, I was walking down the hall of my home in route to my parents room (they both live with myself and my husband). I had a glass of ice water in my hand. I get into their room, open my mouth to speak to them, and the next thing that I know is that I am on all fours trying to pick up the ice cubes. My mother said I turned totally white and hit the floor. My mother came over to me as I was picking up the ice cubes and she literally (she is 79) picked me up/dragged me to my room and put me on my bed. I was dressed in shorts and a shirt and at this point they were completely soaked through with sweat. My mother assumed that I was having a heart attack. She called 911. I managed to get downstairs before the EMT arrived. I had to go the bathroom twice because my bowels "cut loose." The EMT arrived and they took my BP and it was 80/50. They did their thing and off I go to the hospital. Off to Hospital At the hospital, the doctors said that I had only had a "vagal vagus" episode - even though I told them that I have NEVER fainted in my life. I did not have a headache but kept feeling like I was going to pass out. They gave me lots of IV's to "pump" up the volume of my blood and kept checking my BP and EKG read-out. My BP went up to 90/60 and they stated that I had "stabilized" and discharged me 4 hours later. So, I get home (my husband was out of town on business) and my parents were, of course, worried about me. Next morning I felt rather odd - I can't put it into words - just not myself. I called my Family Practice physician and explained to her what had happened and she said to just "come in now." She does her work-up and at this point my left eye is droopy and watering, and when she tells me to thrust my tongue to the left side of my cheek and hold it while she applied pressure to the outside of the cheek. I could not keep my tongue there with the pressure that she applied. She said that she wants and immediate MRI/MRA done. So, off I go to get this. They were unable to get me in until later that evening. The next morning came and my doctor called me and told me that she had some news for me and for me not to get "upset." She is my physician and also my friend and she knew me well enough to "not sugar coat" her information. I had a stroke in my brainstem and in my cerebellum. My Middle Cerebral Artery was totally occluded. She had already contacted the finest neurosurgeon in our area and made an appointment with him that very morning. My husband arrived home and off we went to the Neurosurgeon. (Nothing says lovin' like coming home from a business trip and greeting your spouse with, "Hi, honey. I've got a little problem......." The Neurosurgeon examined me and looked at the MRI/MRA's and said that I needed to be admitted. However, there was no room at the hospital just then and I would need to wait until a bed became available. My neuro wanted me on the Neurology floor and the only beds were in other areas of the hospital. So, there I am with a totally upset husband and being told there are no rooms available at this moment. I found the whole thing rather humorous at this point. I asked the doctor if I was in danger of "dropping dead at the moment" and he said no but that my situation was unstable. I was like, look, I'm starving and if I am not going to die immediately I wanted to get something to eat. So, off we go to eat. My husband was totally freaked out by now and he just kept asking, "How do you feel?" I was consoling him and quite frankly I was not "all weirded out" at all. Anyway, FINALLY we get a bed and by this time it is like 7PM at NIGHT. The nurses on the neurology floor were totally AWESOME. Finally, I am able to convince my husband to GO HOME and chill out. About the time he leaves, his boss and her wife burst into my room and the first words out of their mouth is "We thought you had a stroke??!!" That was the funniest part of the whole day - what did they expect - to get to have the first look at a vegetable?? People can be really DUMB. The next day after much labwork, meeting with Cardiology, Rheumatology, Neurology and Neurosurgery - a plan of action is in place. I am to have a angiogram of my brain - Husband is still highly concerned, especially after I had to explain to him what will happen during the procedure. Off I go for the angiogram and I meet the Radiologist who is just wonderful. I told them that I will DEFINITELY need more meds to "consciously sedate" me that they usually give because I am resistive to medication. He ASSURES me that the dosage they give will be just fine. I won't lie - I was scared at this point as they placed me on that table. They let me keep my glasses on so that I could watch the monitor - that helped SO much. I hear them talking, but I feel no pain, however they did have to increase the dosage as they went along. I am doing great - watching the monitor - and talking with the radiology staff. All of a sudden I feel like someone shot me in the back of the head with a shotgun - I could hear myself scream (like it was far away and not me). The "head" radiologist yells, "Heparin 5000 units - and then yells again "Heparin 5000 units more" - "Get Procardia in her mouth." I swear to you, I was calm as can be - mainly because my husband told me before this test that if ANYTHING goes wrong I promise you that you will not be alone and you will not be afraid. How right he was. I was not alone. I remember telling the radiology team, "Yeah, yeah, you guys said this was a walk in the park"- and I laughed. The radiologist got a bit terse with me and told me to be quiet - I actually heard fear in his voice. What didn't know was that I suffered 2 strokes during this test but they were able to dissolve them with the HIGH doses of heparin. The vessels in my brain actually clamped shut when the dye was injected and did not resolve until 30 minutes later. All the while, the Neurologist was in close contact with the radiology team. I was taken to recovery and this member of the radiology team, bless his heart, had to apply pressure to my groin where the catheter was inserted for over 4 hours - I am not joking. He happened to be black and I just had to joke with him and say "Hey, never had a black guy holding my groin before!" He had the same sense of humor as I do and for four hours all we did was laugh. The head radiologist came in and said that he had never seen anything like it and that he was so glad that he didn't have his usual second cup of coffee that morning. Finally, I get back to my room and they are trying to get the sandbag on my incision. However, when they moved me from the recovery room gurney to my bed I began to bleed once again. So, here comes my buddy from radiology to hold the groin area once more. My husband was waiting for me when I got back to my room and he is definitely not one for blood and gore - but he stuck it out with me during the next 2 hours - Finally I stopped bleeding. I was every color of the rainbow the next day from the groin to the knee. The next day comes and I get another fun test - Nothing like a camera shoved down your mouth. Got sedated again - got to wear my glasses - got to watch a tube go down my throat and check out the condition of my heart. I remember seeing the screen and seeing my heart pumping but I don't remember any pain. The cardiologist is a good man. More lab work, etc. During the night I get this unbelievable pain in the left neck and they do a stat MRI on my vertebrals. I am told that I cannot swallow while this test is being done. So I am quickly thinking of how in the hell am I going to be in the MRI tube for God knows how long and not swallow. I told them to take a towel to one side of my face so that if I drool I will not slime myself or the tube. Mission accomplished! They said they had never seen a vertebral MRI that clearly before. Unfortunately, now on top of the 2 strokes (brainstem & cerebellum) and 2 strokes during the angiogram I am now the proud owner of a vertebral and carotid dissection. I am planning my escape at this point - like dude, am I getting out of here in one piece??? Also, was informed that they found renal vasculitis (angiogram does the brain, kidney, etc.) and a small aneurysm on one of the poles of the kidney. Vasculitis - hubby asked me about that one - I lied and said "It' s nothing." He didn't believe me and went home and hit the internet (damn that internet!) and came to the hospital the next day and was rather peeved at me for lying. Oh, well, like he needed more crap to worry about. (Docs are watching me for any sign of recurrent vasculitis at this time - vasculitis of the brain has not been ruled out) I got to spend 2 weeks in the hospital - got poked and prodded - had so many shots in the behind for pain (from the strokes/dissections, etc.) along with my colorful leg I had two colorful cheeks! HA! They had tested me for EVERY possible disease, hypercoagulation disorder, etc. The conclusion was that they had never seen ANYTHING like what I have. How I Feel Now Now for the current situation - after coming home I suffered panic attacks (felt like my heart was going to explode). It is a residual effect from the strokes. This took approximately 4 months to resolve. I was prescribed Ativan. Yes, I wet the bed several times - Hey let's go buy some of those adult diapers and run into people we know at the checkout counter! I got lost in town - had to call my husband on the cell phone, "Honey, it's me. If I give you landmarks can you get me home?" Got lost in the house a few times (now that was funny). Had a heck of time remembering my computer programs, etc. I would sit down at the terminal and my mind was go off in never never land. My concentration and understanding were awful - They have only RECENTLY come close to normal. However, sometimes, when I am working with technical or financial information I have stared at it for hours and not even realized that I had not accomplished a darn thing. My blood was very unresponsive to Coumadin - it must be some thick blood! They have had to really work hard in regulating my dosage - I take 13 mg Coumadin each night and the BEST my INR has EVER been is 2.3. Most of the time it hovers around 1.9. My neurologist says that NO WAY is he going to increase that stuff any more - He told me that anyone else on that high of a dose would have bled out! (Hey, at least all of them have a twisted sense of humor - I can live with that!) Headaches ( Feeling like my ENTIRE head is in a vice, sore areas on the head - locations changed daily, fullness, tightness - Basically my entire head hurt in a way that was overwhelming) began in January (4 months after stroke). Nubain injections helped tremendously - but I was needing them every month or even twice a month. My family doc has referred me to a Pain Specialist/Anesthesiologist was has put me on Neurontin and Imiprimine. SEEMS to be helping - I am very cautious in saying that it has solved the problem because I know that when younger people have strokes, the brain chemistry is altered. The meds I take for headache may work now but will they work later? - due to the changing chemistry of the brain. Went to Emory University for a second opinion in March of 2001. Neurologist there stated that he has seen cases exactly like mine - but that there is no explanation as to the cause. Mostly this type of middle cerebral artery occlusion occurs with drug users and diabetics. Since I don't fit into that category I fit into the category of UNKNOWN CAUSE. He also explained to me that when the brain "reroutes" itself - chronic headaches are very common. He said that I should be glad that I get them because my brain is making collaterals to compensate for the occlusion. He also stated that I have a block in the internal carotid where it makes its first petrous turn. So, what is my prognosis?? It is fair. I am lucky to be alive because having a stroke in the brainstem is usually the kiss of death. This is a condition that I will have for my entire life. How long will I live? Who knows? However, my doctors are wonderful and exceptionally motivated to help me in any way. My Family Practice doctor (my friend) has put a lot of her "own" time into gathering any new information as have I. When I need to see them - they know that I don't cry wolf - they work me in - with no problem. The Pain Specialist is considering putting botulism injections in my head in the future if the headaches remain. Also, he has put pain blocker shots in my head (in the temples, shoulder area, back of head) and I have gotten relief. So, I have headaches - so what? - that is the ONLY chronic problem the strokes and all left me. Some days are hell - some days are heaven. I go with the flow. When I am totally overwhelmed I just hug on my mother or my husband and they just let me BE - They can't take it from me - They just hold me and that is more than enough. I don't know if this information has helped anyone or not. I hope so. I hope that you do see the comedy in this little narrative and get a chuckle here and there. Hey, life is certainly a comedy of errors! If I offended anyone by anything that I said - believe me - I didn't mean to. Respectfully, Lisa