I am so glad I found this forum as this is a very informative site with lots of support to the many questions we all have when diagnosed with a disease that is very alarming. I been reading it the past days and decided to join as it is all scary to me and no one understands what it is like unless you go through it. Nice to know there are so many friendly people who share their stories and advice.
Recently I had a TIA back in March but was not aware as I thought the numbness in my left side of face and arm was due to my herniated discs. Then my vision was getting worse and I was seeing double plus the headaches were so bad I wanted to cry. I went to my family physician who told me my blood pressure was 201/108 and sent me to a neurologist immediately. They did MRI's and scans of my head and confirmed it was a mini stroke but luckily I did not loose the use of my arm and just had the numbness or tingling feeling you would have if you went to a dentist and got novacaine. He did neurological testing and told me my left side was weak and also my left arm was swollen which I did not even notice. That same day he sent me to the cardiologist at Jefferson Hospital right next to his office as he was worried I also was having a cardiac issue being my father has bypass surgery at age 42 and it runs in his family. I went to the cardiologist who put me on blood pressure medication and did a cardiac ultrasound which showed there was an abnormality in the right side of my heart. He then ordered many blood tests plus a Nuclear Stress Test the next day which confirmed there was something wrong. I was born with a heart murmur and have a history of back/neck issues due to a car accident. Never had high blood pressure until this all happened but looking back ....I should have noticed the symptoms with my eyesight and headaches. Never had chest pain but was getting winded or short of breathe when climbing stairs. He ordered a cath to be done but that was cancelled in April when my blood tests showed a elevated PTT so they told me I has to see a Hematologist. Well they ran even more blood tests which showed I also had Lupus anti-coagulant and also have Lupus as well which does explain all the issues I had growing up with infections or arthritis at a early age. I just thought working around children I was more exposed to infections yet everytime I got sick I ended up on prednisone to help the antibiotic work. Maybe due to my anemia off/on my whole life they just figured I was run down and why I would crash and sleep. Oh and I also had issues with bleeding after any surgery but being I was a red head, the surgical staff would tell me ohhh red heads bleed easy and so forth.
OK so getting back to the heart.....well they finally cleared me to have the cath which was last Tuesday and that is when I got the bad news. My entire right side of the heart is diseased plus I have a 90 percent blockage near the top of the right side. Bad news was they could not place a stent due to the Lupus and said they would have to discuss how to treat this with the Hematologist. Apparently this Lupus thing makes you form clots and can cause strokes and heart attacks ...yet I bleed easy so it is all so confusing. They put me on 2 medications which one is a nitro spray and the other is a beta/nitro drug to open up my arteries. This is so scary as I am only 45 plus was not able to get the stent or blockage fixed yet. Now they did say my left side of my heart grew veins or as they called it little jumpers to the right side so I am getting blood there but the blockage is still there. That is why they told me to use the nitro should I feel the tightness or even pain in my neck or arms since that is where I feel it...sometimes in my back but hard to know if it is my heart or the herniated discs. Maybe that is why I never noticed and thought it was that instead of a heart condition. All I know is it must be all in the genes as I do not even eat red meats and always try to eat a healthy diet......plus excercise as much as I can.
After the heart cath I went home but woke up in the middle of the night with hives and looked like a tomatoe from my waist up to my head. Luckily my mother had stayed with me as she was worried about me bleeding when I came home. Well I then was rushed back to jefferson and they gave me steroids and benedryl as I had what they called a delayed dye reaction. Never was allergic to shell fish and have had MRI's ...cat scans and never reacted to dyes presently or in my past. The ER doctor said my body must have had too much and I developed a allergy to it. That alone was scary as my throat closed up and I could not breath. My question is has anyone had a reaction and if so ....what will they do should they need to cath me again? Also am worried due to this blockage that I risk having a heart attack until they figure out what to do whether it be prepare me with medications for a stent in time or surgery.
Sorry for the long and yes confusing intro but I am just scared and very anxious since they told me my results. I feel like all of a sudden I am falling apart. TIA, CAD and Lupus dx so yes it is overwhelming. How can one be healthy and just turn for the worse where their blood pressure goes from being low to HIGH in just 2 months? I never had high blood pressue until now. Also as far as the lupus.....well from what I read that is also bad for the heart. Sometimes I think to myself that the less I read maybe I will not be more nervous as some articles are either frightening or confusing.
I am hoping to learn more from people who have been through all this and maybe sharing with you or reading your stories will help me to cope. Did you feel anxious when first diagnosed or even depressed? if so how did you help yourself to calm down and not feel like a walking time bomb? I think the stress of worrying is far more dangerous to me now then the actual disease. Try to calm down but until they fix my heart it is hard to not worry or fret.
Thank you for listening to my story and again I do appologize for the long post and yes rambling. Just scared but trying to cope one day at a time. I appreciate any advice or your stories of how you dealt with it all.
hi kelly, this is remar. wow, are you going through alot right now! yes, it is very normal to feel anxious and depressed. i have'nt had any heart problems but my mother had a heart attack 9 years ago, she had to have bypass surgery. she was very scared. and i'm so happy to say that she's in the best of health now. i can understand why your drs. are doing what they're doing, with you having lupus and the bleeding problems. they're just taking precautions. have you asked your dr. about an antianxiety med to take until you get through this? it may help. i wish i could help you more. i am glad you found this site because there are alot of great people here. let us know how your doing and take care. remar
You certainly have had a lot to deal with in a short period of time. The TIA and heart disease may be inter-related since they can all be due to plaque build-up in your arteries (heart and carotid). Many people think heart disease only affects the heart, but it is actually a whole-body disease, so the same plaque can build up anywhere in your body, although t is designated as something else (such as Peripheral Artery Disease). I've had quite a lot of heart-related issues (see my profile), but have not had to deal with Lupus or a TIA or had a reaction to the dye, so can offer no first-hand advice in those areas.
When you question how this can all happen suddenly, you need to realize that it actually has likely been going on for quite a number of years without any symptoms, but when the symptoms finally showed up, the underlying issuse were found. Also, you need to be thankful that you found out about these problems before they produced serious problems, such as a heart-attack or debilitating stroke. So actually, this is good news in some respect! I'm sure your doctors have many options for treating the blockage, and are just evaluating your results to determine which will provide the best results for your particular circumstances. One thing that I've learned over my 15 years of dealing with CAD is that everyone is different, and treatments have to be designed specifically for each patient, and it takes time to find the best treatments.
Let me know if I can answer any specific CAD-related questions
TY all for your replies and advice.
Your right...I am lucky I found out before having a heart attack.
Right now they are treating me with medication so I do not have one being I could not get the stent yet.
Funny how women do not have the same symptoms as I never once had chest pain but did have the jaw pain and lots of pain between my shoulder blades.
The nitro spray really helps....have had to use it the past 2 days but the doctor told me that is why he gave it to me and to use it when I feel the heaviness or any pressure in chest or the other symptoms I had. At first I was scared to use the spray but now I am feeling less stressed as it does work quickly. Only thing is it does give you a headache or it does me. Lucily it passes though after I lay down.
As for CAD, I guess my main question is until I have the blockage fixed .....would swimming be too much as far as exercise? My doctor told me only walking but no exercise that speeds up the heart rate too much and for me not to over do it. Yet I do not want to just sit all the time and not get exercise as I know that too is bad on the heart.
Does anyone know any herbal treatments or dietary advice for cleaning arteries so they do not develop more plaque? I always ate healthy and even added MORE red fruits and berries to my diet.
My caratoid arteries were actually clear thank goodness and the doctor feels my stroke was from a bleed in the brain or said possibly plaque that broke free or a clot. They really arent sure what caused it but at least it was a mini one. Now again my blood pressure was through the roof and I did not know as I used to have lower blood pressure up until this year. Guess my body reacted to the stress I was under at work and the CAD I had which at the time had no idea. I am grateful I am alive and now know what is wrong. I wish I did not have the bleeding disorder as for now I am not allowed aspirin products which I know most take for CAD. The hemotologist is looking into medications for my disorder and how to treat that plus help the cardiologists figure out what will be the best treatment for the Lupus plus CAD.
I have been out of work since March and they said they are not sure if I will be able to return to work due to the multiple health issues I have so I may have to apply for SSI according to my doctor. Right now I am on long term disabilty and my work said I can collect that until my retirement. Only bad thing is I will have to pay my health insurance after I am for more then 6months...so I guess I should look into health care through the state. I thought they would release me to go back after time but from what they said, being I can't have the stent yet, plus the stroke, CAD and lupus that I would have to be very stable to be able to be released and he was not sure if my body could handle the stress from my work. Have any of you been able to return to work after time with CAD or even a stroke.....just curious.
Thanks for the comments....as you can see I have so many questions and am nervous.
I really do not want to take anything for the anxiety as I take so much medication now since diagnosed. I am trying to mediate and will look into herbal teas.
Again....ty ty all!!
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