April

Hi, my name is April Nathaniel. I am pending diagnoses. It is Nov. 2002. Bare with me as this is how it all started and where I am today. About 2 years ago, maybe more I forget, my memory is bad, I had palputations. I went to my regular doctor and said, "I know everyone has palputations but..." and she looked at me and said, "No April, not everyone has palputations"! Well, there wemt that theroy....lol! So she set me up to see a cadiologist and he did an echo and I have mitral valve prolaspe with regurgitatio. A bad heart valve with leakage back up into the atria instead of going all the way into the ventricle.

Usually a nonsymptomatic problem but I am an exception as are many others. I had a TEE (an echo down the esophigus) and an EP study, I developed an arrithmia also but they could not pinpoint the electrical disturbance in my heart and did not want to put a pacemaker in someone my age. I was I guess 38 or 39 then. So meds it was for the valve and arrithmia. Wore a 24 hour monitor and a 30 day monitor and had runs of PAC's and SVT's at +270 a minute. They drain me! Well, I have so many symptoms it is hard to pinpoint them but shortness of breath and extreme fatique are the ones I hate the most, any excertion leaves my breathless and with a runaway heart!

I have an anuual echo every 6 months because my leakage has worsened since diagnoses. I would tell my cardi, I am tired and he would say, are you sleeping enough! Let me add that in 97', after my gall bladder was removed (it took them 12 days to say it WAS my gall bladder, went for months before I went to the hospital, was down to 85 pounds.) I developed 2 months of rare post-operative swelling, anything they had messed with (had the 5 little hole operation), swelled on me. So weird me!

After that I had 10 continuous days of insomnia, period! My doctor tried Ambein and it worked the first night (3 days into this now) for 4 hours and then nothing helped! I took the rest, no sleep, I tried Benadryl, anything and everything, I was lucky I did not overdose, walked a groove around the coffee table thinking it would wear me out! Finally about the 8th day I just collapsed and had 4 hours sleep. Then on the 10th day, I called her again and luckily had had to go through a weekend and suddenly made a connection. If I laid down I was restless, tossing and turning and got this knot in my stomach and had to move so up I went again. I told the doctor, this sounds stupid but the feelings of being restless and needing to move are in my legs, like worms crawling, horrible feelings! Bamn...she said I had Restless Legs Syndrom and put me on 1 mg of Klonipin and 50 mg of Eleivil for sleep. That night was the first in 10 days of sleep! I am still on these meds and will probably be on them forever, better than those feelings anyday!!

Now about a year and a half ago, she sent me to an ENT doctor because I was having dizzyness, thought it might of been my vertigo. She said I had acid reflux. Yeah, heartburn! Then last time I went to my cardi, when he asked how I was, instead of the tired word I said fatique! And short of breath, last test was a stress ech, ever tried laying down with a peddle apperatice between your legs and peddling as they poke the echo thing on your ribs so hard you think hey will break? Not to mention the tension on the peddles changed each 3 minutes, my legs gave out before my heart did!! The leakage is sever and he says as always, we will watch it but surgery to replace or repair the valve is an option now! Great, more surgery! Ya gotta do what ya gotta do!

I am 40 right now, am a single Mom, divorced in '95 and have 4 kids. The oldest he is 22 in the navy, my oldest daughter is 19 and a freshman in college and my youngest daughter is 10 and my youngest son is 4. I live in Houston where we have one of the best medical centers around and St. Lukes Hosptial is a leading heart institute. So I am in good hands. We went through the great flood of 2001, Tropical storm Alison, was staying with my Dad for 7 months as we got this house in shape agin (35 inches of rain) and then got back in last December, my Dad was in the hospital with poor circulation in his legs, clots as usual, many surgeries. He came to stay with me then. Worked so hard all that summer and no time to slow down then in March he passed away, lost his leg 2 days before he passed and it still did not help. So I have had STRESS and it complicates my heart problem. So, in July I started having severe abdominal pain. Went to the ER, blod work, x-rays, pelvic all said nothing was wrong Second visit was about 4 weeks ago, same tests, same results. Then 2 weeks ago, it felt like appendicitus when before it was all over and one each side so there I go again. Same tests but with an ultrasound because I had seen this ER doc and he knew me and I said that was about all they didn't do, did the cat scan the first time. Only showed a 2 centimeter cyst on my overy but the pain was right under my belly button. They admitted me to get to the problem. WARNING...never have a colonastopy awake!! Had them done with the gall bladder (both ends) but was asleep! Not this time and it hurt when he was in my colon! Diagnosis...spasmatic colon, don't know what it is, still trying to get a return appointment with him! Doctors!!

Which leads me to now. He put me on Lavid for the spasms, worked after 2 days, no pain!!!! So I had to go to my doctor, already on the 2 meds for the sleep disorder, 2 for the heart, she had put me on Plavix for stroke patients so I wouldn't throw a clot from the valve and she said my murmur was worse. So she sends me to a different cardiologist last week. He asks questions, I answer, told him about just getting out of the hospital, he noticed where they and tried to put an iv and the vein blew, had a big bruise. So, just by looking at me, he made an observation. He asked what I had ever been tested for. Told him Lupus due to the discoloration on my face, a brownish splotchy kind of thing that when I get really hot, only that area turns red. He says the skin appears tight on my face and around my mouth, had I ever been tested for scleroderma, said no.

So he explains that if my murmur is worse, in all his 30 years as being a doctor, I would be the first patient he has seen needing valve replacement just for the MVP. I said well doctor, you don't know my body very well!!....lol! So, he says lets do an echo and go from there, lets do other tests, the esophical scope and blood work. I said ok! I am used to tests!!! So when I got home that evening, I looked hard at my reflection

Oh my God I thought, I look younger! Where are the frown lines on my forehead, the laugh lines around my mouth? I think I found the right cardiologist and a doctor that is VERY good in his feild!! I am ok with this right now....God knows I live with enough already!! After I may or may not be diagnosed that may change but for now, I am ok! I notice the skin on my fingers look shiney. Some swelling but not noticable, only to me with my rings! He is concerned with the heart being worse, there may be underlying problems...as in...connective tissue disease like sleroderma! So this is where I am today! Heart problems that are worsening, shortness of breath, fatique, problems with simple excertion, the face thing, GI problems and BTW, the heart and sleroderma have both of those so I am doubled up on them, isn't that nice?....lol! So, I don't think the tests will be negative, I know it within myself ya know!! So, when I find out for sure or not, I will be back to read and find out more!

Please write me if you can relate to any of this! I am researching as much as I can, always love being informed on what is going on with my body! I like my new doctor, the old one was one with few words, this new ones says it as he sees it and said so! Had my Dads doctors been as straight forward and honest instead of saying, it will be a long road when his organs were failing, we could of made a choice for him LONG before we had to!! So anyone wanting to write, please do if anything sounds familiar!!!

Thanks for the ears!
Hugs,
April

Update:

My ANA test was possitive, I have scleroderma, I knew it in my heart.....I thought I could handle the diagnosis better, I am but now I know I have a lot to do while I am still able. I am being referred to a rhuematologist so I do not know which form I have. They said it was 20%...but I had an ANA test done a few months ago...that test was neggative so....I have scleroderma. I ware 18 rings, I have small pretty hands...I have always worn rings....that is what I worry about right now....my hands, what if I can't ware my rings!!! I will update as I find out more.

UPDATE!!

http://pdhomes.net/arts/lirpashowers/LosingFaceIHaveScleroderma.html

Love and hugs,
April - lirpashowers3@webtv.net
 

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