I'm going to start this and see how it goes. I have 5 wonderful children, 3 from my first marriage, Nikki, Phil and Mimi. Nikki is 18 and will graduate from high school this comming wednesday. Phil is 16 and typical teenage boy, and Mimi is 13, she is a handful, but I wouldn't trade her for the world. I also have 2 great babies. Lexie is almost 2 1/2 and she is my little angel. She's soo smart and soo funny, just a great joy to be around. Jordan is 13 months and he's mama's little man. Loves his hugs and his kisses. That's my background, life was great .... till this past April. Maybe by writing this out, it'll help me get past the feelings of desperation.
April 23, 2006, I was feeling like crap, so decided to go into the walk in clinic. The doctor listened to my chest and told me I had walking pneumonia, ordered a chest x-ray and prescribed me some anti-biotics. April 24th, went to work but was feeling progressively worse, could not walk any distance or stand for any length of time. Went to bed that night, and every time I would lay down I felt like I was drowning. Bout 2 am, I woke DH and had him bring me into the Emerg. I got there and told them that I had been dx with pneumonia but could not catch my breath and felt like I was drowning. Nurse took my pulse, b/p and temp. Temp was fine but BP was low and pulse was 142. She had me sit still a few minutes and took it again. BP still low and pulse still 130 something. Instead of the usual "Have a seat in the waiting room and we'll see you soon as we can" ... I got the "Come with me now" and DH got "You can see her in about a half hour, we are gonna get her set up" ... into the Emergant Care Centre I go, and set up into a room with 1 nurse per 2 patient care. Hooked up to monitors and blood work ordered.
Doc came in ... listened to my lungs and sent me for chest x-ray ... came back with evidence of pneumonia. Blood work came back with elevated WBC's so they were convinced was just pneumonia at this point, but could not explain why my heart rate was soo high. He decided to do more blood tests ... looking for the posibility of blood clot in my lungs. The D-Dimer test, if positive, is indicative of possible clot. Under 500 is negative, mine came back at 516, just barely positive, but still enough that the doc was not comfy sending me home without further testing. Off to CT I go for a dye contrast scan. 2 hours later, results come back no clot, but lungs do show a pulmonary effusion. Doc still can tell my why my heart is racing and tells me I don't actually have pneumonia, I have fluid in my lungs and he doesn't know why. He gives me 3 days of a diuretic, and says he's gonna set up a cardiology consult for me, but to follow up with my family doc in a few days.
Few days later, I see my family doc, and he's concerned that my heart rate is still high. He gave me some more diuretics as well as another antibiotic as my WBC's were still high, and wants to see me again in a week.
So... a week later, it's now May 11. My heart rate is still elevated, anywhere from 120 - 130, and the cardiology consult from the hospital has been scheduled for June 12. My family doc just isn't happy with this, as he's now convinced the problem wasn't with my lungs in the first place but with my heart. He wants me to see a cardiologist ASAP, and since I've been a patient of his over 20 years, he knows me quite well, he told me he was gonna see if he could pull in a favor for me. Now I'm only 37 at this time, and my doc is wanting me to see a cardiologist ASAP ... talk about scared.
Next day, May 12 (Mimi's 13th birthday), the cardiologist office calls me, they have an opening at 2 on Monday, the 15th, could I be there then. Talk about calling in a favor. Turns out this guy is not only one of the best in the city, he's also my family doc's own cardiologist, as well as a med school friend.
Monday comes and off to see this new guy. He listens to my symptoms, my history, and finally my heart. He tells me that what he suspects is 1 of 2 possibilities. 1 being that there is heart muscle damage, causing my heart to beat faster to be able to pump the blood throughout my body. 2 being a blod clot in my lungs ... even though none was seen a few weeks earlier doesn't necessarily mean there isn't one. He decides I need an echocardiogram and I'm not leaving the office till I see his tech to have one done.
Echo comes back and the news isn't good. I have what's called a Dialated Cardiomyopathy, with congestive heart failure and mitral valve regurgitation. He explains that this could be caused by several different things but we will probably never know the true cause. Could be a viral chest cold that attacked my heart, or could be a peripartum (postpartum) complication. He told me my ejection fraction is 20 % ... in a normal heart it's 50 - 60%, and that he wants me admitted to the hospital, NOW ... no time to go home and get ready.
Into the hospital I go, 4 days on different meds to try to make me feel better. He told me that I'll probably never come off the meds, but that we are gonna try to optimize my cardiac status.
That's where I'm at now, since comming out of the hospital, we are adjusting my dosages of my heart meds, trying to get things under control. I have been doing a lot of research since my diagnosis. I have found out that an ejection fraction under 20% puts you on the transplant list .. yikes. I have found out the survival rate for my diagnosis is not great. I have gone from wanting 1 more baby desperately, to wanting to live to raise the babies I do have. At this point I don't care if I ever have another baby, but my babies that I already have need me. I have spent many nights crying desperately over the loss my family would feel should anything happen to me. I would not be aware, as I was not aware of before I was put on this earth and I will not know when I leave, but it's those I leave behind that will suffer.
I think that's enough for now, having a hard time going on, will continue later.
Saw the internist today. I am also diabetic, and one of the diabetic meds that I was on is contra-indicated in heart problems. She has me back on insulin, as well as the other anti-diabetic that I was on. My list of meds is starting to read like a pharmacy order sheet.
I spoke to the internist about the swelling in only my right leg. It's the strangest thing. With CHF you are more likely to retain fluid, and as with the heart meds I'm on you are more likely as well. Seems my body is retaining some fluid, but it's soo hot and humid here lately it's not even funny. I'm only having the issues on my right though because I broke that ankle ... 26 years ago!!!! ... but seems when there is damage to the lymphatic system, that damage is always there, doesn't matter how long it was. The rest of my body is handling the fluid dump ok, just my right leg having a hard time keeping up. Guess it's not as serious as it could be, but if I start swelling on my other side, or in my abdomen, I have to report to the ER.
I have been feeling pretty good lately. I'm able to walk around more, was unable to even walk 1 block a month ago. I can actually go to the grocery store and do all my groceries, and go to the department store to shop for my kids. Now if only I had some money to actually do this stuff lol. I have had a few random pains in my chest, but they go away so fast I have to wonder if I actually felt them or not. I was told pain that does not go away is a reason to go to ER, but I think these random ones are probably stress related.
I know I have been in denial about my diagnosis ... well, I swing between denial and depression, and have been soo short tempered. My oldes son has been great about helping me with the babies, I have to make an effort to thank him for all his help. My 13 y/o dd has been a PITA. She does as little as she possibly can before she's gone out the door. I sometimes think she wishes I'd hurry up and die so she can get on with her life. I know she doesn't feel that way, but depression can cause some strange thoughts to go through your mind.
My husband has been no help recently. He's had problems with depression on and off over the years, and lately all he does is sleep. He went back on his meds today so I hope things get better. He sleeps till 1 in the afternoon, then leaves for work at 2. He gets home at 12 and complains that the house is not spotless. HELLO!!!! I'm suffering from heart failure, have no energy, and even with the help of my older son, I still have 2 babies to look after. I swear I'd be better off without him, he's my 6th child half the time.
My oldest daughter graduates on Wednesday, I'm soo proud of her. I made her a scrap book of her life growing up. Every page is a different year. I just have to get some grad ceremony pics on Wed to complete the book, then write a sappy letter for the end. That should have her in tears lol, mean mommy. I am soo proud of her though.
Well ... enough for now. I see my family doc on Thursday evening. If my bp is stable, I get to increase my heart meds again. So far so good, my b/p today was 105/57 and pulse was 83 ... those are excellent numbers for me. I hope I hope it remains stable for thursday evening.
Saw my family doc tonight. She had to take my b/p twice, cause she wasn't sure she got it right the first time, was 104/84, excellent for me. She ok'd me to increase my Altace, but not my carvedilol, I have to wait to see the cardiologist next week for that one. Means I'm now on the max dose of Altace ... woohoo ... have only been working up to this since May 15th. Hopefully at my appt. next week we can get me to the max dose of carvedilol.
I was taken of the actos Monday and put back on insulin, and what a difference. No more problems with swelling whatsoever, no more lung congestion etc. I know the Actos was contra-indicated in heart failure, but didn't think 1 little pill a day could make that much difference. I have to wonder now if that wasn't the cause of all this. It's one of the extremely rare side effects, but it is one of them anyway.
My daughter graduated yesterday. She was just glowing, in her blue cap and gown. She's all done high school now ... I must have done something right raising her, she's my pride and joy right now. She's heading out camping on Monday with 11 others from her grad class. That should be interesting. She's been camping all her life, but this is the first time she's going as a grown up and actually having to do the work. Don't I wish I was a bird in a tree for that one hahaha.
My DH got a call from his mom today. His grandmother has been admitted to the hospital with heart failure. She's 86 years old and has a pace maker. Doesn't sound good for her, so my prayers are with her tonight. I also have an aunt that is end stage lung cancer, so I know she will be leaving us soon.
I'm also sad tonight, I had to have my cat put down. She had lost a bit of weight recently, but she still seemed ok. Tonight, her breathing became labored, and when DH picked her up to check on her, she lost her bladder control. She tried to jump out of his arms, so he put her down on the floor, she was barely able to walk a few feet before she fell over and had a seizure. We brought her to the vet, and she was also in heart failure. She said we could treat agressively, but that MIGHT only give her a couple of weeks, or she might not even survive the chest tube the would need to put in. I couldn't see her suffer like that. My head knows I did the right thing but my heart is still breaking. She was 13 years old and I'd had her since she was a kitten. I will miss her but I know she's no longer suffering.
Overall, it's been a strange day, with such good news on my condition, but the bad news about DH grandmother, my aunt and the loss of my dear kitty ... what a jumble of emotions.
Well, that's it for now. Will update again when I have more to report.
I was back at the cardiologist yesterday. He said my heart seems to have quieted down some, which is good, and he upgraded my CHF to between a class 1 and class 2 failure ... great news. He suggested I wait a couple more weeks to increase my b-blocker, as my ace inhibitor was just upped last week. Seems fair to me, my b/p was only 100/70 so still adjusting to increase in meds.
He is scheduling me for some more testing in August. He wants me to have a heart wall motion study. He's hoping my ejection fraction will be somewhere around 40%, but realistically he's figuring it's gonna be around 30%. If that's the case I will be referred to the heart institute to have an ICD installed ... fun ... NOT!!
He said there is also a new test offered here, just started doing it this year, and it's somewhat like a Dye contrast CT, but it's of the heart. He'd like me to have that done, and if it can show the wall motion, I wont' have to have the other test done ...
I also don't need to see him again till after my tests are done, no more living in doc's offices. I just have to pop into my fam doc's office on Wednesday's for my b/p check. All seems to be going well on a cardiac front.
My disability insurance is being a PITA. They have now sent my file to a consultant to see if my diagnosis justifies my being off work .... ummmm, I'm lucky to be on this side of the ground, but they wanna see if i'm really disabled ... ok. What worries me about this is that cardiomyopathy is a rare diagnosis, and even a lot of family doc's are not familiar with it. There are some cardiologists even that are not familiar with it. And yet some "consultant" is gonna decide if I'm sick?!?!!?!? I may have a fight on my hands, will know at the end of july ... all sooo frustrating .... I NEED A VACATION!!
Speaking of that, it's probably not gonna happen, DH goes on overnights in August . It's bad enough I that with him on evenings he sleeps till noon or 1 when he can, but with him on overnights he's gonna sleep till it's time for the kids to go to bed, I'm reallly going to feel like a single parent. Thankfully my older kids are around to help out, with my heart I just don't have the energy to deal with 2 active little ones. I'm slowly feeling more energetic, but certainly not myself. I'll get there, I have to believe that.
My chest is tight and hurts soo bad tonight, but it's behind my right breast, so not sure what's up with that. Probably cause I was feeling lousy last night and did not sleep well. I hope I can get a decent night tonight. Hoping my cough won't keep me up.
I am supposed to wait 2 weeks before increasing my coreg, but I might just do it next week. I will be at my max dose at that point, and hopefully things will settle down even more. I've always had a "feeling" that I would not make it to 40 ... well I just turned 38 in May, 2 weeks after being diagnosed with heart problems, now seems I may be right, I might not make it to 40 after all. That scares me. OK, none of us are guaranteed tomorrow, so I have to stop thinking negative. Maybe once I feel better I'll start thinking more positive.
I got some PM's from the girls on my June 05 board in the past couple days. I'm so touched by the thoughfulness. Just when I was feeling so alone, you proved me wrong. Thanks girls, your messages meant more to me than you'll ever know.
Kevin had his consultation appointment today for his "V". Sx is scheduled for Sept. 14, it all seems so final, but we know it's for the best. I'd love one more little baby, but a pregnancy would just be soooo dangerous for me. It's sad, but I want to be here for the kids I do have.
The doc also gave me a different med for my stomach, Pantoloc. Hopefully this one will work better than the Losec. Time will tell.
I was so proud of myself today. I was out and about, dealing with beaurocratic BS about my son's heath coverage .... sooo annoying .... anyway, popped into pharmacy to check my pulse and b/p on the way home, bp was 95/60 and pulse was 84!!! 84 is awesome for me, as usually that's my resting pulse, with my active pulse being about 100. Just patting my own back so to speak. My doc was happy to hear about it too. Today is a good day . It'll be nice when there are more good days than bad ... I'm sure I'll get there.
I wish I would hear from the Heart Institute soon. My cardiologist sent the request for Rehab on June 12, and again on July 7, and they still haven't called ... BOO. They are also supposed to call about the tests, but that could take longer as Dr. D wanted to consult with another cardiologist first. I hate waiting!!!! Not very patient ... can you tell.
Well, that's it for now. Thanks again girls for the support. Can someone PM me the link for the other board. Thanks
Finally got a call for the chest wall motion test. That will be done next wendesday the 26th. I asked about any special prep, the girl said bring a book. It's a matter of injecting a dye into my veins, then waiting for it to get to it's destination, bout an hour, the 2 sets of pictures, and I'm all done. I'm praying for a e/f of at least 30% although that's unlikely. Any improvement would be nice though. My cardiologist is at the hospital next week so he wont see the test images then, and then his entire office is on holidays the week after ... BOO ... means it'll be at least 2 weeks till he even see's the images. I have an appt. with him AUg. 30 to go over the results, unless he calls before then.
I will also be getting the CT Angio done, but that will be done else where so I'll be hearing from them seperately. In that one he's looking for blockages, that might explain why I got this conditon in the first place. Seems diabetics are more suseptible to it ... lucky me.
I did my last increase in my heart meds on Sunday evening .... blah, I feel like crap, and that usually lasts about a week. I hope I'm feeling better after that. I also have a weird pain in my back tonight, don't know if it's heart related or not, but it's right about where my heart is, under my left shoulder blade area. It's not real bad, just an ache, one more thing to obsess about I suppose.
Kev's vacation was approved ... again ... today. He's gonna be off from July 30 till Aug. 14 we will be going camping. I hope we are anyway, if we are still getting this horrible heat and humidity, I'm not leaving my air conditionned house.
It's amazing how good I feel when my meds are working together. I had a bad week and half or so after my last increase but now I feel so good. Can't fool myself though, still have to learn to take it easy and let others help.
We went to the flea market this morning, and it was crowded and hot and we had 2 cranky kids with us, but know what, it was fun, and I was able to handle it all, and I feel fine now . We got a little tykes table and 2 chair set for the kids for 20 bux and it's in great shape. Lex also got the last teletubby to complete her set of 4, and I got him for 5 bux ... I know, it's silly but she loves the teletubbies, and she had the yellow, the red and the purple, well we now have the green also Dipsy's new home.
I had a nuclear scan done last Wednesday, but won't get the results till Aug.30, cause my doc is on holidays, then it takes a while for the test to get read and sent to the office and filed. If there is anything urgent another cardio will contact me sooner .... so I'm hoping no news is good news.
An ejection fraction of under 30% means I get sent to the surgeon for a defibrillator, and over 35% means I get to coast and only see him a few times a year. Anywhere in between means I get a nuclear scan in another 2 or 3 months or so, and depending on results it'll be decided from there. I'm hoping for the best but expecting the worse. I have to expect the worst so that I'm not shocked/dissapointed if that's what happens.
I went and visited with BA, my aunt with lung cancer the other day. It's soo sad, she's terminal and is at the comfort palliative care stage now. The chemo had caused her to lose all her hair, and it's now grown in curly, this is a woman who's hair was so straight it was like trying to curl a broom. She went down to under 100 lbs at one point, although now with the steroids she's up to about 120. Her average weight before was 140 - 150, but that's a drastic diet. She's on morphine patches and pills, and because the cancer has spread to her hip, she can't walk or wear skivvies, and all she can do is lay on her left side. One of her lungs has collapsed and is growing new tumors and she has a hard time breathing. She's only 50, it's just not fair. My poor grandmother, she lost twin daughters at birth, then lost my uncle the day after Lex was born to a massive heart attack, he was 50 at the time. Now her daughter is going too. Of her 6 kids 4 will be gone and the remaining 2 (my dad and my uncle) have completely dissapeard off the face of the earth. She hasn't heard from either of them in over 2 years and doesn't know if they are dead or alive. I haven't seen my dad since I was 4, and my half sister hasn't seen or heard from him in years either so we are of no help to her. All she will have left are her grandchildren and great grandchildren. For a woman of 83 she is incredibly strong and resiliant, and I hope to be like her if I make it that long.
Well, for a short update I guess I've been long winded. Will update more when I have more to update .
Not to much exciting going on at the moment. Going away tomorrow for a few days, only to the valley to visit with the IL's, but it's away from home, and we'll be staying in a hotel with an indoor pool ... bonus.
I finally have some appt.'s scheduled. I go for my Heart CT Scan on Aug. 23rd, I see the internist on Aug. 25 AM, then same day in the PM, Jordan and I both have an appt. with the family doc. THen on the 30th I have an appt. with the cardiologist to get my MUGA results, although I hope to have gotten them from family doc already, and on Sept. 1 I have my first appt. with the Cardiac Rehab ... that's the one I'm looking forward to. I may actually be able to take an active role in my recovery.
Will update more when I get my MUGA results. Lets hope for an ejection fraction >35%.