hello i am a 38 year old female with heart problems. i will tell you my story and maybe some of what i tell you can help you and i need your input and opinions on my condition as well. i have had all four of my heart valves replaced and have chf and cardiomyopathy as a result. i was hospitalized three weeks ago with heart failure. my echo done while in the hospital was 20. since my last hospitalization i am to see my cardiologist weekly and all the heart tests and labwork done weekly. i am on strict bedrest so i do not strain my heart anymore. since my last hospitalization i have been feeling terrible. my feet legs and abdomen are very swollen. my blood pressure an hour ago was 70/50. my pulse rate is 150 to 180 despite me taking my meds. my chest also hurts and i cannot breath have to keep taking deep breaths to relieve how uncomfortable i am. today i also noticed the vein in the side of my neck is sticking out and i feel a flutter from time to time. i had an echo done on friday and was told my ef was 8! they called my cardiologist and he ordered me new medication and put a holter monitor on me and told me no exertion whatsoever and he will talk to me about it on monday at my appointment which is tommarrow. i know i will be hospitalized after he sees me. can i have your opinion on what is going on with me. i really need to hear from someone who shares some of my conditions. now i will try and help you. i do not think you have silent ischemia. chf and cardiomyopathy are very taxing on your heart. also you have had three heart attacks. i think that is why your ef has dropped. also your angina could be caused by your chf. i know i have chest pain frequently. or also you may need to have a cath to check your arteries out since you are prone to heart attacks. i do think it is difficult for a cardiac patient when they have chest pain. some of is normal for us and it is hard to distinguish if it is from our current problem or a new one arising. also are you overexerting yourself? i do know as a heart patient i tend to do more when i feel decent and do more damage to myself. i will ask my cardiologist for you tommarrow see what he will say about your situation. i hope i was of some help to you. take care redsoxgirl

Hi,
I thank you for your reply and am very sorry that you have had so many heart problems. With all that is going on with your heart it sounds like you need the very best of specialists in your area. Your cardio will probably do this today.
I'm sure you are aware of the possibilities down the road, including transplant. It is a possibility.
Just real quick I'll give you my history, 3 m.i.s, 2ohs,8 angioplast and stents, heart bypasses, aortic valve replaced in 04 and an ICD with bi-vent pace last year.
I'm having a cath done tomorrow in houston. I hope they find something ,I feel terrible. My 3 year old valve is one of the problems. It's leaking and I have stenosis . I hope I get an answer.
You sound like your being very strong about your difficulties. I try to also. My faith in God has helped greatly over the past 20 years .I'm 64 yrs. and I think there
is still an answer to my prayers. I think there is for you too. I'll be thinking of you today. Please let me know what transpires.
God Bless,
jrod- Jerry

thank you so much for replying. you are a very nice person and easy to talk with. i want to express my graditude for your honesy and saying a transplant may be down the road. i had an early appointment with my cardiologist and he immediately admitted me to the hospital. he said my heart is very large and it is in end stage heart failure. my dual pacemaker is not helping me. he is going to drain the fluid from my heart and lungs today. he also said he would like to implant a left ventricular assist device. do you know anything about them? i know i cannot leave the hospital when they implant it. he also wants to put me on a transplant list. you were right. i do not care if i need a transplant anything to feel better. i just do not want to be hospitalized all the time. i feel like a science experiment all these monitors and ivs. could you advise me on why the nurses are in here like every 15 minutes to listen to my heart. i thought that is what the monitors are for. they are scaring me and also are annoying. ok now onto to you i hope you do not mind i showed my cardio your posts and he seems to think your angina and feeling terrible is due to either your heart valve or an artery. i was right with the cath. do you have to stay overnight? if you need your valve repaired it is a piece of cake ha ha no seriously the operation is not that bad. i have to go the nurse is in here again to listen to my heart and it looks like they are going to do an ekg too. my cardiologist is allowing me to use my laptop so i hope you will reply. we can support each other. i have all the time in the world to reply. god is good and he will help us both. take care redsoxgirl janine

Hi,
I guess this is good news as the new assist devices are fantastic. They use the device , in most cases, as a bridge to the actual transplant.
I've studied them ,as it is a possibility for me down the road, and they do a fantastic job circulating your blood. Some people say they would rather keep them than having a transplant. This is probably not possible in your case, but you will probably feel a 100% better while you are waiting. Some people actually go back to a fairly normal routine.
The device is quite small and usually hooks up to your left vent. You will wear a battery pak on the outside.
I am really excited for you. It could be a new begginnig for you.
We are getting ready to leave for houston,about 3 hrs. I don't have a laptop but I'll try to contact you within the next day. Looking forward to that.
Hope you feel better, God bless
Jrod-Jerry

Hello. It was good to hear from you. Thank you for telling me about the assist device. My doctor talked to me and said I need a biventricular device instead of the left ventricular device. He said my heart is failing very badly. I am upset though that most people get to go home with the device. I have to stay in the hospital until I get the transplant. That could take forever. I had a setback today while taking scans of my chest and heart so he can drain the fluid my cardio discovered blood clots in my chest and right lung. I am on blood thinners. Now I have to wait longer for the assist device. So in the meantime my heart is getting worse and it cannot afford too. Sorry to sound like I am feeling sorry for myself. I am just getting discouraged. I hope you had a safe trip today. I feel very bad that you feel so terrible. I will pray for you. I hope they find out whats wrong with you so you will have answers. My cardioloogist said he is glad I found someone I can talk to that is going through severe heart problems like me. I hope I am not being a pest or annoying you. I have family and friends but you are going through heart disease and you know what its all about. I will be praying for you and I am eager to see how you made out. If you do need a transplant in the future it cannot be any worse than what you have been suffering with all these years. I am getting tired too much medicine .I am going to go to sleep now. Not that i will get much with those pesty nurses in here all the time. Good luck tommarrow. I will say a prayer. redsoxgirl janine

Hey girl, it sounds like your having a bit of bad luck. I am so sorry you have to stay in the hosp. till they get a heart for you. I can't help but think that you will be a joy to everyone there. Is the blood thinner your on coumadin? That's what I take.
My cath went well. No surgery in the near future. He is going to try to find a stem cell research program that they can get me enrolled in . It will probably take a little while but I'm looking forward to it. I guess I'll be a guinea pig. They say the program shows great hope. They inject adult stem cells into the heart muscle to se if it rejuvenates the dead tissue. I have to wait for one that they inject thru the coronary arteries and not over the mech. valve as it might damage the valve. I have no problem waiting it will all be good.
Talk about rejuvenating, it sounds like you could use some. If I tell you I'm a yankee fan will that help? Probably not.
I'll let you go for now. Take care of yourself and I am praying for you. jrod Jerry

P.S. What hospital do they have you in?

first of all i cannot believe i am conversing with a yankee fan! please do not tell me you a rodriguez fan! well at least you are a nice yankee fan. you give hope to all the rude obnoxiuos yankee fans. us redsox fans are nice and humble. have you been to a game? there is nothing like being at fenway when the yanks are in town. the playoffs probably caused my heart to get worse. i only like jorge posada. i am happy your cath went well i was thinking about how you made out. so you have to feel terrible still. did they change your treatment any? did your heart worsen or stay the same?i am a firm believer in stem cell transplant. that is so exciting you get to try that treatment. i hope you get to participate soon. i am glad you do not need surgery. i had an unusual occurance last night. i was a code blue. i was lucky they restored my rhythm. i do not remember it. i now have a tube in the vein in my neck and an incision under my collarbone with a line to my heart giving me lasix and digoxin. i usually take them orally. i met my transplant cardio. he is very nice. he said my heart is ailing very badly. he also said it was good my heart stopped for the fact it made me very high on the transplant list. he is also giving me such aggressive lasix and dig therapy because i still have my fluid overload that they could not remove yesterday because of the clots. he said the fluid overload needs to be removed quickly because he will not implant the bivad until its gone. he wants to move quicky before that fluid goes and more accumulates. they had a feeling my heart was going to stop that is why they are always listening to my heart. he said my lungs are getting weak but surprisingly my other organs do not look bad. i take coumadin for my heart valves but they were giving me shots of heparin in the stomach. he said also i cannot leave the hospital. i have to stay and wait for the heart. i am really upset about that. my regular cardiologist just walked in it is 11pm i know the nurse called him. my heart is racing and they are afraid because of last night. wait a second until he gets done. ok he did some kind of massage to my jugular vein. he told me not to try it. like i really was going to. he also told me to get some rest. i hope to hear from you take care i am glad your procedure went ok. ugh a yankee fan! redsoxgirl janine

Hi,
I just hate that you are having such a hard time these last few days. I know you will feel so much better when you get that assist device. It's nice to have a doctor you can trust and talk to. So many seem to be into themselves. It sounds like they are doing everything possible to get you ready for that transplant. Your area has some great hospitals and doctors.
I'm sure they couldn't give you any idea on how long the wait might be. I got a feeling the good lord is getting one ready for you soon.
No, I'm not a rodriguez fan but I do like Jeter. I grew up near yankee stadium and saw most of the big names play. Players like Dimaggio,Berra, Ford, Mantle and so on. Old ain't I?. How about that super bowl.
I'm praying for you everyday and I know only good things are on the way for you. Your on top of His list.
I'll look forward to hearing from you.
God bless,
Jerry

hello so good to hear from you. how are you feeling today?i appreciate your prayers and encouragement. you saw alot of great players! you are not old. i bet you miss going to games. no bivad today. the transplant cardio and surgeon said not. my both cardios are very nice. it makes being ill a little easier. i met the transplant surgeon and he is a very serious man with no personality. he actually made me scared .he spoke to me about things like i am a surgeon. i am not unintelligent but i had no clue to hf of what he was saying. i am afraid to ask him to explain. he did a whole bunch of scans on my heart today. he is concerned with the size of my chest cavity because it is small. he reviewed an xray from my pcp i had in 2006 when my heart was not sick and he said my heart and chest cavity were small. i am 5"0 and weight 90 pounds when i do not have fluid overload. could you explain to me if this is good or bad. the nurse this morning was forcing me to eat and was nasty about it. i am not hungry and my trans cardio walked in and saw and pushed my tray away and said it was ok. he just came back a while ago because my rhythm is wild again and he brought me a frozen decaf drink from starbucks. i almost cried. i also thank you for the support and friendship you have given me. it is well appreciated. hope tp hear from you soon. i want to read about your stem cell. i find it facsinating. i have to go the respiratory thetapist is here. looking forward to hearing from you. janine redsoxgirl
.

Hope you enjoyed your starbucks drink. It was very nice of him to do that for you. I'ts good to have somebody there who cares how your doing. We just got in from wed. lenten service. I had a funny feeling you were writing me during the service. That's the man upstairs keeping an eye on you.
My guess as to why your transplant cardio was worried about the size of your chest cavity was probably twofold. First it makes it a little harder to insert the device he's planning to give you. They put them in children so shoudn't be a problem. Secondly, and most importantly, you will require a smaller persons heart due to your size, hope everythings ok with the lungs it makes things easier.
Tell those nurses to back off. Your the one that's sick not them. Yea I do miss going to games. The old yankee stadium was really neat. One of a kind. I think the green giant is a neat ball stadium. Been there once. Won't tell you when.
I'm going to wish you a great night and happy dreams. I'll talk to you tomorow. Sleep tight.
Jerry-jrod

i know what game you are taking about. you had to mention it. i had to laugh you called the grren monster the green giant. how are you feeling? you have been avoiding that question the last couple posts. my starbuck was delicious. what i would not do for a cup of regular coffee! i know that is off limits. thank you for answering my question about my chest cavity. no bivad today. the trans cardio said i have high risk surgical concerns that need to try and be handled first. he told me to be patient. i do have a fever. is that from my heart? i do not feel sick except for my heart. can you answer that question. i forgot to ask the trans cardio. i know i will not ask the surgeon. i have to have a heart and lung biopsy today. i hope the surgeon took happy pills today heck i would not mind if he had a couple drinks before he came ha ha. that is amazing you were in church as i was posting. that is a good sign. i also pray for you as well. they have my legs elevated so high they hurt! they still are swollen. my abdomen swelling did go down. i have to go the surgeon is here. i will probaly be ready for the biopsies. take care hope to hear from you redsoxgirl janine

O.k. so I won't tell you that I'm drinking a cup of reg. coffee. I love my coffee too.
I actually feel much better today. I don't feel very good about your situation. Sounds like your fever might be heart related but not necessarily. Your body is trying to fight off a number of problems and your immune system is quite compromised. You are, no doubt, getting the best care possible. All precautions have to be taken when your in this condition. Have you had any lung problems in the past? They probably want to make sure your lungs are in good shape for the coming surgery. Just don't let the surgeon drink right before he operates. I'm hoping the biopsy goes well.
You're gonna make it ,I know. I promise I'll do some rooting for the red sox.
God bless
Jerry

i am glad you enjoyed your coffee. do you think when i finally get my bivad i could drink coffee? since the device will be doing all the work for my heart. i survived the biopsies. the heart one was painful because they went in through my jugular vein. i already have a tube in the other side of my neck. the lung biopsy was not bad. just a little sore. my fever is the cause of bacterial myocarditis. another heart infection. my trans cardio said it is not good i have it but bacterial is better than viral. he is giving me antibiotics. i asked him about the bivad and he said they are looking day to day. they do not want to implant it and cause more problems. a few things need to resolve first. what is your take on my myocarditis? the trans cardio said i am very sick but to relax and trust him. he will let me know when i should give up hope. i got to see my daughter finally today. the reason i have not seen her is because she is teething very badly and miserable and very jittery. she is so chubby and cuddly. she was very good today her tooth finally broke through. she took a nap while she was with me. she is also a red sox fan. she has her hat and shirt. do you have children? i got sick three months after she was born. you do not have to pity me and root for the sox ha ha. the surgeon was so miserable. he can only have a drink when he does test. when i have surgery i do not care how miserable he is i will not be awake. i am glad you are feeling good. i was relieved to hear that. i never had lung problems before. just coughs and colds. i was very active i ice skated and speed skated. look forward to hearing from you. again thank you for helping me and being honest. i feel the same way you do. but i trust the trans cardio. god bless redsox girl janine

Hi,
Sorry the biopsies were uncomfortable. I know it's a hard go for you ,but try to hang in there I think good things are on their way. I'm glad the myocarditis is bacterial and not viral. It will be a lot easier to clear up. You seem to be taking alot of this in stride. Good job. By the way your infection involves the heart wall and tends to weaken it. The antibiotics will help get you to that assist device. I can't wait.
It was great that you got to spend some time with your daughter. I bet it made you feel better. I'm sure you can't wait to get home with her and the rest of your family and root on those sox. You are blessed to have a cardio that seems to be so caring. Trust him and tell him I said thanks. I use to ice skate [ on my ankles] till I fell more than I skated. Not much ice skating in so. Texas.
You mentioned giving up hope, don't. Good things are going to happen,betcha. I'll write later to see how you are getting along. By the way I have 2 children and 4 grands. stay in touch.God Bless,
jrod jerry

wow four grandkids! i bet they keep you busy. i loved seeing my daughter. she is such a good baby. i hope she is able to come today. i am so unbelievably tired today! i just want to sleep all day! no bivad today. i decided to ask the surgeon besides the myocarditis whats taking so long for my bivad. i also told him to explain to me in simple terms. he explained i also have r ventricular failure which creates high pressure in lung circulation. before implant he is now giving me medication that can support the r ventricle. when he sees an improvement with that he will implant. i will needs a pediatric device. he said it may be uncomfortable when he implants it. i did not ask him what he meant by that. could you explain. will i feel the device inside of me because of my small chest cavity? he also said he will not operate with the myocarditis. i am not giving up. just discouraged. i am the type of person that when a problem arises i want to fix it. the transplant anesthesiologist will be in to meet me today. i cannot wait to watch a sox game! i hope you are still feeling good today. my prayers are working for you. your prayers are working for me. i just have some setbacks. i did thank my trans cardio for you. he said i am a joy to take care of. he said when a patient respects him like i do he will go out of his way. i think he is exagerating i am a joy. i enjoyed hearing from you. if you have time you can write me later. i appreciate you friendship and time you take to write me. i am going to try and sleep now. looking forward to hearing from you. redsoxgirl janine

Hey kid,
Hope you got some rest today. I know your tired you've been through alot. These problems you've been going through lately should start settling down soon. It sounds like they are doing all the right things for you.
Yes there will probably be some discomfort with the device when it is implanted. They are using a pediatric ad, no doubt, because you have such a small chest cavity. I can understand your frustration with everything that's been going on I don't know if I could really handle it. I think your little daughter has a lot to do with it.
I've been feeling a little stronger these last couple of days My cardio prescribed a fairly large dose of coreg. I think it's starting to work.
Your trans cardio is ,I'm sure, right about your being a joy to work with. He will, no doubt, be a much stronger doctor after caring for you.
Thankyou for your prayers they are definitely doing the job I hope mine help a little. You are truly blessed to be a blessing.
Believe it or not I am actually looking forward to that first redsox game. Don't tell the yankees. Get some sleep. See you tomorow.
Good night
jerry

hello how are you today? i am so happy the increased dosage of coreg is helping you. my prayers are helping you. like yours are helping me more than you know. i thank you for writting me again last night. i look forward to your messages. i slept almost all day yesterday. my trans cardio was in really early this morning. my fever is 102 and i had chest pain and severe tachycardia again. no bivad today. he said i have every abnormal heart sound he cannot wait til i get my bivad or my heart. he did say i have to try and eat. i ate some oatmeal. it took me an hour but i finished it. he gave me nitro and changed my digoxin to lanoxin. i was not in a talking mood this am to ask him but how come the myocarditis is taking so long to go especially with the high antibiotic dosage? i feel like sleeping all day again! i did not see my daughter yesterday. my cardio called my husband and told my family to stay home because i needed the rest. i think my family needs a rest. so it was good for all of us. my daughters name is luciana. i am italian. i hope i can see her today. what do you mean you do not think you can handle what i am going through. you also have been and are going through alot. i admire you. you are stronger than you think. that is my job to convert all yankee fans! i have to go they want to do an ekg. looking forward to hearing from you. janine redsoxgirl

Hi,
I hope your getting some rest. It will help beat that fever you've got. I'm sure that it will take a good dose of antibiotics to get rid of the fever. It might even take a change in the antibiotic to get it done. Do you know what drug he is giving you? I don't especially like oatmeal myself but I do take oatbran. It kinda keeps things moving if you know what I mean. The digoxin might have somthing to do with the tach. That's probably why he changed it.
When you had your valves replaced ,what type of valves did they use? Mechanical or porcine? My next choice is going to be porcine not mech. I don't like taking coumadin. I'm probably looking down the road at that in about a year. No big deal.
I hope you get to see your daughter today. I love the name, Luciana. I was raised in an Italian neighborhood in New York and both my sisters married Italians Alot of texans call them[I] talians. Whatever. Love the food and love to cook it.
Be sure to ask your trans cardio what your ekg shows. And I'm not quite a redsox fan yet but you're doing a good job. Get some rest . It's all good.
God Bless,
Jerry jrod

hello again! hope you doing fine this afternoon. well its a start when a yankee fan wants to watch a redsox game when they are not playing the yankees. you better have that valve taken care of. do you have to wait a year? you want to be ready for your stem cells when its available. i have mechanical heart valves. i was not given a choice if i was i would have chose the porcine because i also hate taking coumadin. it is one of the worst medications i am on. i slept a while today. my daughter and husband came. she was in one of her see what i can touch moods. she is strong for being so young. she managed to rip off one of my heart monitor leads and wanted to put it in her mouth. she did not like it when i told her no and took it off of her. luckily i remembered i had a toy in my handbag. my trans cardio said my ekg showed my normal abnormalties along with a few new findings that concerned him. elevated st waves and inverted t waves and something with q waves i cannot remember. that is not the answer i was looking for. do you know what any of that means. also ventricular tachycardia. he ordered nitropaste and they rub that on my chest. he said i am having vasospasms. he said my heart is very large inside of my small chest cavity. i also vomitted today. so much for the oatmeal. he is giving me clindamyacin for the myocarditis. thank you for explaining to me about the bivad being uncomfortable. i have to try and eat again. before this i loved to eat! what kinds of italian foods do you cook? i make good polenta. hope to hear from you soon. i cannot stand being this tired. i wanted to try and read but i have no energy. praying for you. janine redsoxgirl