Blood Clots

Maja1959
By Maja1959 Latest Reply 2012-09-01 15:03:27 -0500
Started 2012-07-12 09:35:59 -0500

Not sure what to think anymore. I had an icd put in 12/27/2011 then the leads came loose and I had to have it redone on 2/3/2012. With that surgery I got three clots in my upper left arm. They put me on coumadan for three mos then was off it for a month then they did a doppler early this month to see if they were still there. Then I went last Friday to find the results. I was upset because the office called to reschedule my appt and when I had the doppler they seemed to be having issues but they could not tell me anything the doc has to give results.

So I waited till this past Friday. My appt was scheduled at 4pm. I did not get out of there till 6:15pm. I was upset. When the hematologist came in he asked what I wanted him to do for me? He said he did not know what to do to put my mind at ease. I said well you are the doctor…he said very nonchalantly that you don't worry about provoked clots mine are provoked because of my surgery putting the icd in. He said you worry about non provoked ones because you don't know where they came from. He said that he did all the bloodwork and I am not prone to blood clots. He said that one has dissolved, that one is dissolving but when I asked about the size he said they don't measure size, and the third has not done anything. He said we could do coumadan some more but he preferred just to do the baby asprin. We willl do another doppler in three mos. He said that it takes time for them to dissolve and everyone is different. I asked about them moving and he said that the ones in the leg move quicker than the ones in the upper extremities. He made me feel stupid for worrying. I told him I am not the authority on blood clots. I only know they can kill you. When he said he would recheck me in three mos I wanted to ask him why bother the way he was so nonchalant. My ejection rate was at 15-20 when I got my icd and now it is at 30-35 last month. So it is improving. My only complaint is that I am still tired and I can be really forgetful. My cardiologist encourages me to keep busy. She says you don't use it you loose it. My osteopath says I can lift 2-3 lbs my cardiologist says 25 lbs. I wish they would come to an agreement. My osteopath says and what if he would and then I could not handle things and then I would lose my disabiity and could not get it back. I just turned 53 last week. I don't like being so idle. You can only clean your house, read, and knit or crochet so much. When osteoopath gets back from his vacation I want to go sit and talk to him. Idk what to think.

Tags: symptoms

24 replies

sadi23
sadi23 2012-08-13 18:10:21 -0500 Report

Maja1959 I know how you feel. I have had doctors that have treated me the same way.."stupid" I have learned they work for me and if I don't have a good connection with them, I find a new doc or get a referral until I find one that listens…

I wish you the best, we know our bodies best and if you feel it should have further testing or a another look, you make sure the doc hears you and you get what you feel you need. You may have to change the language, look it up on- line, so your more informed and you know what to request for and use their medical terms, it helped me to do that:).

As I found there were things that I kept bring up and the doc kept blaming the symptoms on my Systemic Lupus or some other secondary condition. Then I was finally tested and I am now at late stage Congestive Heart Failure.

When I believe, if I was tested a few years back it may of never gotten this bad… So fight what you feel in you heart is necessary, its better to find out there is nothing wrong, then to find out you have a very advanced new diagnoses..I hope that helps, God bless you & your Teri

Maja1959
Maja1959 2012-08-13 19:27:15 -0500 Report

& your Teri? Whose Teri?

HeartHawk
HeartHawk 2012-07-13 23:42:54 -0500 Report

Maja,

Good to hear from you again and thanks for starting this discussion. You would not believe how many people are interested in this issue but are afraid to talk about it. Hopefully, you will help break the ice.

Docs will likely never all agree because there are many schools of thought - some more or less outdated. Being on some anti-platelet med even if only aspirin is probably a good idea. Coumadin can be useful if you can put up with the frequent testing.

The docs are right about one thing, everyone is different and there will always be post-operative issues like clots (provoked clots whcih are not as dangerous as unprovoked clots). Losing weight is always a good idea (assuming you have weight to lose). But, the best idea is to shop for a good doc you trust who will take the time to give good, honest answers. Never be afraid to be a little pushy (sounds like you are already frsutrated enough to push back a little). Keep us informed with reports on how things go and your questions.

HH

Maja1959
Maja1959 2012-07-31 09:57:26 -0500 Report

Thanks for your thoughts. I just don't know what to think. I am on the asprin and yes I do need to lose weight. I just keep muddling. I get so upset over these stupid docs. He asked me what I wanted him to do for me and he did not know what to say to make me feel better that the only other way was to go back in surgically and take them. Heck that is the way I got them in the beginning when I got my ICD. I still have two out of the three clots. I worry about them moving. My arm feels funny sometimes. Hard to explain. And I wonder are they moving what is causing this funny feeling. I called him to see if I could do my carpal tunnel surgery both hands his nurse says to wait awhile I just had my clots. Then I said ask him how long is awhile she said he said six mos. I got my clots on Feb 10th and so I counted March, April, May, June, July, and Aug. I said that is next week I talked to her last week. I said that made no sense to me. He said not now cause it was too soon but then said I could do it in six mos from when I got them. Which is now. The nurse said it would be up to the surgeon doing the carpal tunnel surgery.

That is also like the deal with the dentist he wants a slip from the cardiologist saying it is ok to clean my teeth because last time they cleaned my teeth I really bled. I am no longer on coumadan but on asprin. I am a diabetic and when I prick my finger in the morning to take my blood it is like water because asprin is a thinner. My cardiologist said it is fine to have my teeth cleaned. She said nothing about discontinuing the asprin before I get my teeth cleaned. This worries me. I have been putting off getting my teeth cleaned. Not sure what to do.

I have been so forgetful just over simple stuff. I always have to carry a notebook to write stuff down in. I am 53. Some say it is because you don't get enough oxygen to your brain. My ejection was 15-20 then last mo when I saw the cardiologist she says it is up to 30-35. I do get down because I get so much conflicting info. Guess I should be lucky I open my eyes every day and can walk and talk. Some also say if you don't use it you loose it. My hubby's job is vry shakey. He was laid off last Nov he went back to work a month ago he was promised work to this Nov. Now they are talking layoffs already! He wants me to go back to work. I am aloud to make up to 1000 a mo to supplement my disability. I do not know how people survive.

I do not buy anything but groceries and pay the utilities. And put gas in the cars. Oh and car ins. And some medical. Heck with all my medical I have almost met my ded and medical out of pocket. So we may be good for this year. So some say if you don't use it you loose it. So I found some free classes through The Private Industry Council they are English, Reading, an Math. I took the placement test last Monday and I had a meeting to discuss scores yesterday and I start next Monday.

Not sure what to think. We jut got a notice about our 35th class reunion. So that tells youhow long I have been out of school. I talked to the instructor about my forgetfulness. I have always thought about being a nursebut heck how would want me working on them if I am forgetful. I am going to go take the classes and see what can do. I heard them say the other day that they were short I said do you need someone part time? They told me to apply on their website. So we shall see.

Here is an update on my dad. Remember he was so sick and needed open heart surgery but needed to be stronger? Well he met with the surgeon yesterday they are going to do another heart cath caue it is over six mos old. And some other tests then they are going to schedule a date for surgery. From what I understand the ehart cath is this Fri. The last hart cath we almost lost him the plug popped ad he hemorraged. Idk. But as long as he is positive aI guess that is where he is headed. Not sure how he is going to feel about the nursing home. They said it would be a log recovery. He checked himself ot of the nursing home before and he was able to get home care. We shall se.

My son is a senior this year we are going this Fri to tour Westmorealand Community College. He is currently atending votech for Computer Engineering Tehnology. He got straight As last year. It is a three year course they are pushing into 2. He got a 2.93 gpa I was thrilled for him being as he has been battling costochrondritis and working after school as a dishwasher in a Italian Rest here in town. The only drawback is he finally got his drivers lic the end of June. I don't think he is exp enough to drive by himself. I make him pay his ins and he thinks cause he can't take the car by himself heis paying for a rock. I am thinking about letting him take the car by himself to work this Thurs from 4-10. It is just down the road and the entire town is rolled up by 10 so there won't be many on the road at night. I have to start somewhere. Well better go I am gong to make homewmade buns and some cookies for my son and hubby. Not sure how much time I will have once I strt my classes. Please excuse my typos as I tpe my screen is jumping all around.

I have been busy transferring videos of my son when he was small to dvds. That has been my summer project. I got them all transferred to my computer. Now I have to edit them and burn them. I would like to find a bigger external hard drive to stre them on. The one I have barely holds them. Does the ob but I can't use it for anything helse. Might go look at office max. I see thumb drives for 20 for a 32 gb. I need one for my class. Well better go get my baking started. Hope your summer is going good. Sorry I wrote a small book. lol It has been awhile.

Maja

sadi23
sadi23 2012-08-31 23:33:45 -0500 Report

Maja, don't worry about writing a long letter, I enjoy them your life is filled with love and you are still able to get some things done, and that is important… Keep it up… I worry about my son so much, he made it through driving so far :) so I was worried for nothing, so don't worry to much, my son is now 23 and he is a good boy.. Its scary these days lol have a good week-end, by the way I am Teri, well (sadi23) nice to meet you…

Maja1959
Maja1959 2012-09-01 09:18:20 -0500 Report

Sitting around and vegging today. My dad had open heart surgery last Wed. He is not in a step down unit seems to be doing good heart wise. He is somewhat confused and argumentative and not wanting to use his breathing thing to strengthen his lungs. He is argumentative and mean told me to put it in my purse and get it out of there! I am tired. Slept till 930am today but don't believe in sleeping in all day. I woke Jeff up and he is suppose to work on homework before he goes to his friends graduation party at 2pm. I am not sure if I will go back down to Pittsburgh to see my dad today. I would like to but with it being Labor Day there will be parades and baseball games our Pittsburgh Pirates are doing really good. We left at 2pm thinking traffic would not be so bad yet and being it was Fri and Labor Day Weekend it was like a parking lot on the parkway yikes! Dad is very confused and not happy. He says he is not in very much pain which I find confusing after having his chest cracked. I don't know. Well going to make french toast for breakfast. Hungry for something warm. Happy Labor Day! Mine is 17 and we are starting to look at colleges. Going to watch Penn State game today. It is horrible how one man can ruin such a great football program. He makes me so angry.

sadi23
sadi23 2012-09-01 15:03:27 -0500 Report

Maja1959, I sure hope your dad gets better, can I ask you some thing??? Did your dad behave the way he does now before surgery? As surgery can mess one up for a bit. If he was not, they may want to try to give him some Clonzapam, its is a relaxing and calming medication. It is just a thought, its mild, ask the doc about it, he may do his exercise? I don't no, just trying to help:):) have a great day Teri

HeartHawk
HeartHawk 2012-08-31 23:47:43 -0500 Report

sadi,

Heh, sons and driving! Closest I have been to a heart attack yet, lo!! Funny how, underneath it all, we are all so much the same!

HH

HeartHawk
HeartHawk 2012-08-01 00:01:28 -0500 Report

Maja,

Good to catch up on things! Forgetful? Heh, join the club, lol! That's why I keep notes too. Yeah, times are tough but what can you do but keep on keepin' on. Although, I gotta tell ya, with all your symptoms you might be a candidate for that new wheat-free diet. Seems it's not just celiacs that have to worry about wheat and it's not just the gluten. It's the whole plant! Try baking stuff with almond flour instead of wheat. I make some killer panckaes and blueberry muffins with the stuff!

I remember I used to have to take antibiotics before every teeth cleaning because of a mitral valve problem that actually cleared up on its own. Aspirin should not cause a bleeding problem as I take the same dose you do. Best thing is to talk to your dentist and ask about what they think caused the bleeding. It could b a lot of things.

You are also right about another thng. You gotta start somewhere. Starting is often the hardest part. Getting involved again is a wonderful tonic for keeping your mind off the bad stuff. Once you get started the momentum can keep you going.

Summeri is awfullly hot but it beats the alternative. I always promise myself that THIS summer will be different but I get so busy it slips away. Changed my mind and wnet for a bike ride with my son after initially saying "no" because I had to finish an article for HeartConnect. So, I go the bike ride now staying up late to finish the article, lol!

Now, get after those darn docs. If they give you heat start looking for another. Rome wasn't built in a day so don't expect ANYTHING to happen overnight. Yeah, it's frustratingly slow. But, it's the old adage - every journey starts with the first step!

HH

Maja1959
Maja1959 2012-08-05 19:22:53 -0500 Report

Where do you find the almond flour? Can you give me a link to the new wheat free diet? Starting this English Reading and Math class tomorrow it is a refresher class to ease back into working. I want to try to supplement my disability. I am so forgetful and it really really upsets me. Everyone says joing the club. So does that mean that I have to hang it up at 53. I can't remember…I got let go from a job because I could not remember MS Word and I am a secretary.

This is something I have to remember. I have to be able to help feed my family and myself and pay for medical as well. This really bothers me. I hope the teacher tomorrow can give me tricks to remember. I got a email from diabetes.com where diabetes attibutes to memory loss. I need to find time to read it. I have done next to nothing today and I am tired. It is 8pm and I want to go to bed. But promised my son that he could stay at a friends till 9pm. It is raining too so you know who has to go get him. My husband gets up at quarter till five for work. So that is how I got dealt that card.

I am glad that my class tomorrow is not till 1pm. I have to leave here by noon. Done at 4pm. Home by 5pm. My arm with the clots has felt weird for two weeks now. Going to have to call the blood doc tomorrow. Idk.

I am glad that you took the time to go for the bike ride with your son. Sometimes you just need to take time for yourself. Thanks for all your do at Heart Connect too to help us all. Haven't heard from mbueno for awhile. Have you heard from her? Wondering how her daughter is?

I was really nervous about my dad he had another heart cath because his latest is six mos old. He hemorraged three days after the latest one. And really bled. I was worried about them doing this outpatient. Here they did it in his wrist. I did not know they could do this. So far so good. He was even sitting texting me on skype the other night too. I don't know why they don't just do the heart cath from the wrist area all the time. There are so many complications through the groin it seems like. We almost lost him when he hemmoraged before.

Well better go. My arm with the clots is bothering me. It is a weird feeling off and on. Not sure what to think. Doc said you only worry about non provoked clots. Mine are provoiked from my icd surgery. Idk.Take Care. Good to hear from you!

Oh where do you buy the almond flour? I have not seen it. Do I have to go to a speacility store or can I get it at Walmart or GEagle?

I better go get ready for tomorrow. Take Care.

Maja

HeartHawk
HeartHawk 2012-08-05 23:01:30 -0500 Report

maja,

I buy my almond meal (the term almond "flour" might confuse some clerks) from Trader Joe's. It's good quality and about the lowest price I have found.

You can start your investigation into going wheat free (it really is a miracle for some) by visiting this link

http://www.wheatbellyblog.com/

Yeah, they do almost all heart caths through the arm in Europe. I'll have to ask why it is different here.

Nope, haven't heard from mbueno. May have to drop a line!

HH

Maja1959
Maja1959 2012-08-07 10:05:45 -0500 Report

Hmmmm…my arm with the clots is acting up. Hurts in the arm pit,etc. and shoulder up into my neck. Called yesterday and got a doppler early this morning. I had to be there at 630am for a 700am was home by 8am called and left a message for doc so he knew he could pull it up a little after 8am when the radiologist got in to read it. Funny thing is I didn't realize that hematologist did not open till 830am.

I could not sleep last night and then was up early for this test. Now I feel I could nap. I started my English, Reading, and Math class yesterday and one of the articles we had to read as part of the reading was in the Newsweek March 26, 2007 edition it was about Exercise and Brain Power. lol

I did not get to finish reading it. I have been trying to google it. It is called "Stronger, Faster, Smarter." It is funny wondering if the instructor is trying to give us a hint. Like jump on the treadmill before class? Wonder if that would also get rid of headaches? lol

You were saying that you are in the same boat as far as when I taked about foregetfulness before. I thought it was funny how this all came together with the article that the teacher picked for us to analyze and read.

It is almost like you need to walk on the treadmill for a hour or so before you go to class? It says it helps against Alzheimers and ADHD and forgetfulness. I am and am not crazy about my instructor. But it was my first day. She treats it like a job. She writes things on the board. You walk in get your materials follow directions, you sit and write and read and do math sheets then the second half she goes over things.

She gave us a math worksheet. I could not remember much. There was a younger girl sitting beside me with bronchitis. She was helpful explaining things. The second half of the class then she passed out an answer sheet to the math. Asked us to review it and then asked us if there were still any we were having problems with?

i felt that I learned more from the young gal that set next me then the instructor.

I am going to have to go. I need to check my crock pot. I am making chicken alfredo. Better get moving.

Maja

HeartHawk
HeartHawk 2012-08-07 22:58:13 -0500 Report

maja,

LOL, crockpots! I used to LOVE making crockpot food. I wonder why I stopped. Nothing beats slow cooking for tenderness and flavor! Man, I wish I had some crockpot chicken and vegetable right now!

I gotta tell you, exercise helps me with everything. Sometines I feel like death warmed over then force myself to exercise and voila, I feel better. It's like magic!

HH

Maja1959
Maja1959 2012-08-11 20:13:36 -0500 Report

You make me smile. So please pass along your recipes for slow cooking. My trouble is that my crock pot food seems over cooked.

HeartHawk
HeartHawk 2012-08-19 22:32:56 -0500 Report

Maja,

Heh, no real recipes. Just used to put chicken or beef with vegetables in the pot with a little water (just s touch to cover the bottom) and some salt and pepper (occasionally some Lawry's seasoned salt). Cook it on the low setting for 8-10 hourd while at work and voila, you have dinner when you get home - tender and juicy!

HH

Maja1959
Maja1959 2012-08-19 22:36:38 -0500 Report

Crock pot veggies for me always seemed to be carrots, potatoes, celery, and onion. Seems like the same old same old. Hey I have this #3 up by my profile how do I get rid of it? Good news clots are gone but still have arm pain. Real achey waiting for blood work to come back. Getting late. Nite.

HeartHawk
HeartHawk 2012-08-19 23:17:42 -0500 Report

Maja,

Yup, those are the classic crock pot veggies. I also like squash, zuchini, and red/orange/yellow peppers. That #3 typically means you have three unaswered posts on you profile. Good news on the clots! Let us know how the blood work looks and make certain to let the doc know of the continued arm pain.

HH

Maja1959
Maja1959 2012-08-20 07:01:21 -0500 Report

But I went to those posts and I answered with ok. And it is still there. How am I suppose to let you know about the blood work. All they say is the clots are gone. I have been to the osteopath and he says that is is post whatever. I can't remember the long medical name.He wants me clot free for three mos before I do the carpal tunnel surgery. So that means Nov 7. Nobody seems concerned about the arm pain. I was just at the doc last Wed for blood work he hasn't gotten back to me yet. I am going to call him today. I am also a diabetic. Wondering why my feet are cracking and hurting in the summer time? Do you know how to heal them up? I put equate Antibiotic Ointment. Well better get to class. Talk to you latter.

HeartHawk
HeartHawk 2012-08-20 22:44:55 -0500 Report

maja,

There was a discussion on the cracking skin issue a while back with a few suggestions. Here it is.

http://www.heartconnect.com/discussions/339-dry-and-cracking-hands-and-skin

Regarding the bloodwork, just ask you docs for a copy of the test results and post them here or in another discussion. I have "seen 'em all" and can probably give you a pretty good idea of what they are saying so you can discuss them with your docs.

HH