Janea's Journal

Has anyone bought or used a home INR monitor Coaguchek INRange System? It has blue tooth capability and I wondering if you like it? People who use Coaguchek Xs System (their older machine without bloue tooth), so you like it? Has it been accurate for you? Where did you buy it? Thank you!

I am 7 months post op from my heart surgery and 3 days ago I had to have a second surgery. I had a hysterectomy due to chronic menstrual hemmorhaging courtesy of Warfarin. Being on blood thinners has been such a challenge for me. Here is hoping it gets easier!!

I was in the ER again last night for the third time this month for excessive bleeding. INR was 4.2. Not too high. I am now severely anemic and have lost 5 pints of blood in just 4 days. I am almost 6 months post op and can't believe my life is still consumed with DR. appts at this stage in the game. So dissapointed.

Questions: Do you like using your home INR monitor? What brand do you use? I noticed you can buy the test strips and monitor on Amazon. Does anyone own there own machine? WHo doses you? Do you feel competent to use it? It will cost me $1200 + to pay a company to let me "rent" their machine. I wondered about owning my own. It seems so much cheaper. I would love to learn as much as possible about this. Thank you!!

I am feeling soooo discouraged. My INR has been very unstable. It bounces all over the board. One week I am a 1.3 and giving myself Lovenox injections, the next week I am a 5.3. I have even been as high as an 8. The last two weeks I have been in the 4's and have had a spontaneous 45 minute nosebleed during a board meeting I was giving a presentation at! So embarrassing! Now my problem is heavy menstrual bleeding. I was in the ER today per my OB/GYN's request thanks to that lovely issue. I need a pep talk! It feels like this will never get better and sometimes I find myself regretting my valve choice. I know it's not good to spend time ruminating over a permenant decision, but honestly I had no idea that I would have this many problems with the drug. Anyone have advice for me? I am feeling extremely discouraged.

The other day I tried walking up a hill for the first time. I picked a hill I have walked up a hundred times. There are two places on this hill I always have to stop to catch my breath before making it to the top. I'm 6 weeks post surgery. I climbed up the hill for the first time in my life with no stops! I was hardly breathing hard when I reached the top. It was EASY!!! I burst into tears at the top. I couldn't believe I did it! This means my symptoms were caused by my valve and my new valve let's more blood through so I can charge up a hill with ease. Yahoooo! My life is going to be drastically different in a good way!

So I finally reached 2.3 INR in the hospital and they let me go home. Yes!! The next day my INR was 1.9 and today it is 4.2. Goodness it is hard to regulate!!

Hi Friends, I cannot believe I am writing my almost 4 week update from the hospital! My thoracentisis was a big success. They pulled over a liter of fluid from the space around my lungs! Now I am just waiting for the INR to go up so I can go home. My INR is 1.4 right now. It has budged only slightly. I can't tell you how happy it will be to be back home. My kids are so ready for things to go back to normal. ....just got word. This morning my INR is 1.5. It only moves up by a tenth of a point. Looks like I may be here a while longer.

Hi Friends, I cannot believe I am writing my almost 4 week update from the hospital! My thoracentisis was a big success. They pulled over a liter of fluid from the space around my lungs! Now I am just waiting for the INR to go up so I can go home. My INR is 1.4 right now. It has budged only slightly. I can't tell you how happy it will be to be back home. My kids are so ready for things to go back to normal. ....just got word. This morning my INR is 1.5. It only moves up by a tenth of a point. Looks like I may be here a while longer.

I went in to see my heart surgeon for my two week check up. To my utter surprise, he told me he was readmitting me to the hospital. My small pleural effusion has grown into a moderate one and I have fever, coughing, shortness of breath ect... so now I am in the hospital waiting for my INR to go down (3.8) so they can do a thoracentethis on me. I really, really hope they can pull the fluid out that way because plan B is a chest tube and I know from first hand experience how badly chest tubes hurt when they are placed between ribs.

Well I have been home from the hospital for a week. I still have no energy and spend much of the day lying down and resting. Today I went on two twenty five minute walks. I still have a small plueral effusion in both lungs and breathing takes a lot of work. I have also come down with a coughing sickness and it's soooo painful. I cough and cough and cough each day. Robitusssin is my friend. I have been pretty miserable but trying to keep in mind that this is all temporary and my old life will come back to me soon, but probably in very small pieces. Today was a hard day, but tomorrow always holds the chance that it will be better than today. Eating is hard for me. Everything tastes TERRIBLE! It's like someone has altered my taste buds. Has anyone had this problem. I have to force myself to eat. There is no pleasure in it.

Sorry you haven't heard from me. I guess my husband was too overwhelmed to post my updates during surgery. My surgery was 8 days ago and I was thrilled to learn they were able to fit a same size/ slightly larger mechanical valve in place of my tissue mitral valve. I was told because of scar tissue, it is only possible to place a same size (if your lucky!) or smaller valve in place of the old valve. To think that I have an even bigger valve than the one I had before, and knowing that mechanical has better flow characteristics, I feel I can dare to dream of increased activity level, someday in the future. My dream is to run again and hike up a mountain with my family. I can't believe how good I feel and how different this surgery was from the last! Wow! Last surgery at this point I was still extremely miserable in the hospital. This time I got out on post op day 6. Last time I came out of surgery with and ejection fraction of 20 (Bad! It eventuially went higher over time). This time I came out with a higher ejection fraction than when I went in! (from a 55 to a 65). I am tired and sore and of course dealing with the normal ailments, but I am also going upstairs frequently, walking like a champ, napping occasionally but mostly around my family interacting and doing normal things. All heart valve surgeries and recoveries really are not created equal. I was ten years younger during the last surgery and it was ten times harder than my experience now. I will post some pictures soon!

I heard from the anethesiologist yesterday and surgery is a "go" for this Friday. Phew! Who would ever think I would be celebrating that, but I am because my surgery has been set three different times!! Ironically, someone from my surgeons office called me yesterday afternoon and said they have had some emergencies comes up and would it be okay if I had surgery tomorrow? WHAT THE?!! Um, ya....that is a problem. So glad it was optional because that would have been a crazy-big problem. That is like asking someone if it's okay to move their wedding day up a couple days. There are so many parts and pieces in place for my surgery and recovery (like for example, I have 4 kids and their first day of school is today the day she wanted my surgery!!) Nuts!! While I am not excited for the healing process I am definitely tired of being on this side of things. So bring it on. Let's do this!!

My surgery was postponed a month because of low hematocrit. I have spent the last month getting iron transfusions and eating read meat and spinach but my levels still aren't up as high as we want. Has anyone had a similar problem?

I posted a couple pictures of me holding an Onyx mechanical valve on my Care Page if you want to see what one looks like up close http://www.carepages.com/carepages/HeartNews2015/photos/6353813

Wow, I had just adjusted to having my surgery earlier, out of state family members changed their travel plans, hubbie got the time off work and rearranged all his projects, family members cleared their schedules, friends allowed me to change child care dates, and ironically I got a call this morning from the hospital saying my hematocrit is too low to do surgery and I have to wait a month and work on getting those numbers up. This is a great exercise for learning to be flexible! My hematocrit is in the low 30's. They normally want it in the low 40's but since I am a redo surgery, and they tend to bleed more they want it even higher than that. I have been taking iron but it hasn't really helped. Oh well. Here we go re adjusting everything again. But at least my surgeon is setting me up for success and the best possible recovery. That is the good news!

Just finished my Pre-op appointments today. They moved up my surgery a week which was really dissapointing. I don't have the time I had hoped to get things ready. I have four kids at home so lots of planning and prep to do. I did decide on a valve today after months of research and serious pondering. I will have a mech. valve because it has the best flow characteristics and I sooooo badly want a shot at living a more active lifestyle. I am quite handicapped with severe exercise intolerance. I hope it works. Only time will tell.

What apps are people using to help them track their vitamin K intake? Do you have a favorite food journal app you use? I would love to learn of any app that you find helpful managing your coumiden diet. Thank you!

I Just scheduled my surgery - Aug 19th. Is there a way to see who else has the same surgery date? I know there is always a list of upcoming surgeries on the right hand side of this page, but can you see farther back then the dates listed there?

Has anyone done a heart catheterization with exercise? I have never heard of this test and my cardiologist has never done it before but has read about it. They are trying it on someone in 2 weeks and I will be person #2 to get it. I want to know what your experience was and what they learned from the test. They cath you through the neck and then you ride a bike. I have to say I am feeling very nervous about it.

Can you fast on coumiden? I fast for 24 hours once a month with other members of my church. Will I be able to do that once I have a mechanicle valve or will it mess up my INR and cause problems?

Iam curious to hear from people who have had minimally invasive heart surgery (from the side via the ribs). What was the recovery like? What was it like to recover from your lung being collapsed? Has anyone had both a sternotomy and later the other surgery. Im curious which one you preferred.

I am looking to connect with other Moms who have had or are having surgery with school age or older kids in the home. My first surger, I had babies and little ones. Now my kids are older (2 teens & 2 school age) and im trying to figure out what my recovery plan should look like. Surely I don't need as much help as I needed before. Iam thinking this is a good opportunity for my teenagers to rise up and help. I was planning on pre making many freezer meals they can heat up or prepare. And dividing chores up. Has anyone tried this? Did it work? My mom could stay with us for several weeks but I want to be as self sufficient as possible.

Hi all, After reading about LaDonnas recovery experience, I googled what cardioversion was because I wasn't sure what that entailed. I found this helpful blogpost of one persons exhttp://www.ekgwatch.com/cardioversion/erience.

Is there a tissue Mitral Valve that has proven it can last longer than 10 - 15 years in younger patients? I read somewhere on this website that bovine valves last longer than porcine. But when I look on the internet I am not seeing much that validates that. It looks like horse tissue is used in aortic valves (not mitral), and that aortic valves made out of tissue tend to last longer than the mitral valves do. I am getting my monster list of questions ready for the cardiologist and wondered if I am missing something. Does someone know more about this? I am dissapointed more advances have not been made in the Mitral Valve world since my last surgery!

I am really amazed and comforted by the number of young people on this forum. I had my first surgery at age 31. I felt so alone and was lucky to find someone else to chat about surgery with who could relate, but they were usually in their 70s. I always was the youngest face in the waiting room, on the surgical floor ect... But there are many, many people in their 30s & 40s and some in their 20s! It is so helpful to know people share your challenges & problems and age and stage of life. Thank you heart forum!

For those of you who decide to go to another state to have surgery because you are impressed with the skills or expertise of a specific surgeon, how is that financed? Does your Insurance cover it or are you paying out of pocket?

Hello everybody!! I am new to this website. Please don't take offense when I tell you I am not thrilled about belonging to this forum. I would much rather be apart of a different online group...like "Fans of the Carribean" or something :). Nevertheless here we are! Despite the unfortunate tie that share in common (valve problems) I am grateful to connect with others who have walked or our walking a similar path. My first question: Is anybody out there on a non-coumiden blood thinner? I read they haven't been approved for heart valve patients...only afib? Does anyone know why? If you have taken them before, what do you think about them? What has your experience been like?