Well, I passed all the tests for the LVAD with flying colors at my 2 year follow up! Yes, it is wonderful and well worth all of the of hard work. My scar ...Read more
Well, I passed all the tests for the LVAD with flying colors at my 2 year follow up! Yes, it is wonderful and well worth all of the of hard work. My scar is still very sensitive. I have used the CBD salve and that really helps but I can't wear a bra as the irritation over the incision is too painful. I still have days that I can not do much of anything. On the days the humidity is up is difficult for me. I have finally adjusted to the foods that are good for me and the fluid intake amt. The pills required are many but do make a difference. I did have a GI bleed in Jan. so was in the hospital for a week. I passed out in the parking lot of my doctors' office. Some strangers got me help. That was the strangest thing. I was told the VAD pump had broken down the cells so much from the continuous pumping that I was not getting the oxygen, iron or B12 that I needed. I encourage any who will be having open heart surgery to stay strong and persistent in self care.
Marie Myers I just read your story and journals, and you have had a rough time. I hope things smooth out for you! ... Read more
Marie Myers I just read your story and journals, and you have had a rough time. I hope things smooth out for you!
After surgery I felt that 1 year let alone 2 years post surgery were so far away. This was when I had the LVAD surgery which was 2 years after the initial ...Read more
After surgery I felt that 1 year let alone 2 years post surgery were so far away. This was when I had the LVAD surgery which was 2 years after the initial open heart surgery. Those 2 years after the first open heart surgery was very hard and I was not recovering. Now I am recovered!! What a difference!! Now the 2 year date is very close, June 21. I have worked hard on gaining my memory and balance back. Finally last week was able to go up and down stairs like I used to. Need to celebrate that. I notice that I appreciate being able to do things and not have a shortness of breath. I am so grateful. I tell myself how much I appreciate these types of things every time I do something and I still feel good. I go to SLC Utah tomorrow to have my 2 year follow up and I am confident it will be great. Of course I have limitations and there are time I grieve the life I had and at the same time am so appreciative that I still have a life. I have been going through things and getting rid of them, doing the crafts that I enjoy and spending time with family that I like being with. Life is full of surprises and wonderful things. I hope all that have had open heart surgery and have the surgery coming up do well and recovery smoothly. Linda
Rose Madura Glad you are doing so well and are enjoying your good health.
Susan Lynn Happy Second Anniversary!!! ❤❤🍾🥂 Wishing you many more decades of good health! Keep that ... Read more
Susan Lynn Happy Second Anniversary!!! ❤❤🍾🥂 Wishing you many more decades of good health! Keep that positive outlook, Linda!
I am updating my status. I am doing well. I just had my 18 month follow up in SLC, Utah and was told all the labs look much better than they have looked in ...Read more
I am updating my status. I am doing well. I just had my 18 month follow up in SLC, Utah and was told all the labs look much better than they have looked in the past. I have graduated to only having to go to Utah annually after June 2019. My next follow up in SLC is in June. Since August the PCP has heard from me about being tired all of the time. I had told SL, the cardiologist and the PCP about being tired for about a year. Finally in August the PCP ordered an Iron infusion as the labs showed anemia. The anemia has been present in the lab work for about a year and I was feeling more and more tired. The PCP referred me to the Oncology center for the infusion. I had 2 Iron infusions and a B12 shot at various intervals. Wow did they make a difference. I feel great and believe the Iron and B12 are the reason my lab work looks so good this time. I have learned that I am the expert on my body and it is very important to keep reporting to the professionals, they need to listen to you. I have been careful to follow instructions to the letter. Every morning I weigh, take my temp and blood pressure as well as record the readings on my controller for the LVAD and my blood sugar levels. Two times a week I check my INR as I certainly do not want a blood clot or to bleed to death. I monitor the salt and fluid intake as well as the carbs. There is a lot of monitoring going on. The monitoring is becoming more routine. I have known for years that everything in our body is connected but in having 2 open heart surgeries I have learned (that I don't know much) how integrated everything in our body is connected and one thing effects another! What an intricate piece of machinery!! I am working on losing weight and can't seem to make progress. I need to lose 20 pounds. I need to change something but what I am not sure.
I just want to say it does not matter what your health condition is please follow your doctors advice. After my heart surgery I was told to be sure to call ...Read more
I just want to say it does not matter what your health condition is please follow your doctors advice. After my heart surgery I was told to be sure to call the on call coordinator if my temp. was 100 or greater. On Christmas Eve mine was 100.2 . I wrestled with myself as to whether I needed to call or not as I didn't want to interfere with their holiday and I had things to do for my family. After about 90 minutes my following instructions sense won out! I called and the dreaded words I wanted to avoid were heard, "Go to the ER". After about another 60 minutes I decided I best just go so I packed a bag as usually I am admitted when I go. I spent 6 hours in the ER as they took me back right away and ran a bunch of tests. I was released after the 6 hours and told that I might get a call in the next few days telling me I had an abnormal blood test and would need to come back. I felt good and went home and finished some of my projects. The next morning, Christmas morning at 6 a.m. the phone rang, it was the ER stating that I had some sort of blood infection so needed to return for an antibiotic. Naïve me thought I could go to the ER, get a prescription for and antibiotic, leave, pick up the antibiotic, return home, take the antibiotic and wait for the infection to go away. I finished some tasks as my family was coming over for our family dinner and gift exchanges in a few hours. I went to the ER and was there for 8 hours. Finally the ER doctor said I had to be admitted as they could not figure out what the infection was therefore didn't know how to treat it. The cardiologist called the doctors in SLC, Utah and the CDC of NM. They flew me to SLC the next day. The NM CDC figured out it was the bacteria of Granulli Catellus. This bacteria is in everyone's' mouth. I was in the hospital in Utah for 6 days. I had to have the penicillin antibiotic for 6 weeks. This meant going to the hospital here at home to have the penicillin ball changed daily as it lasted only 24 hours. I am so grateful the obedient part of me won the wrestling match on 12/24/17 to call the coordinator. The infection in the blood is called sepsis. If I would not have called the infection would have gotten worse. I felt good the entire time. My PCP told me I should have felt bad but I did not. Again it is important to do as instructed. I went to SLC in March for my 9 month follow up and got a good report. In June I went back for my 12 month follow up and again got a good report. I am so grateful for the medical field's progress so I can enjoy my family longer and have a good quality of life. My sisters, husband, daughter, cousins and in laws are my biggest support system. Thank you so much.
Catie B Oh my goodness! That was so very serious! I'm very thankful you made the call and that they were able ... Read more
Catie B Oh my goodness! That was so very serious! I'm very thankful you made the call and that they were able to identify the bacteria, so you could recover. What a rough time you had!
Domingo Padilla Wow and today my surgery got postponed because my Dentist said I needed to get evaluated by a periodo ... Read more
Domingo Padilla Wow and today my surgery got postponed because my Dentist said I needed to get evaluated by a periodontist to make sure there is no bacteria in my gums for the surgery.. then I see this and to think the hospital suggested me to me to just use this medical mouthwash.. I am glad we decided to postpone it...Thank god you listened to yourself.
Rose Madura Yes. Good post to remind everyone the importance of following instructions. I know people (not on t ... Read more
Rose Madura Yes. Good post to remind everyone the importance of following instructions. I know people (not on this site) that go to the doctor and then don't follow the instructions. This drives me crazy! Glad you are OK. My brother is an infectious disease doctor and he has told me the dangers of sepsis. God bless you. And take care.
Mark Wilbur Amen to all of the above and thank you, Linda, for sharing your experience with us. While we focus o ... Read more
Mark Wilbur Amen to all of the above and thank you, Linda, for sharing your experience with us. While we focus on the "big" picture, we need to be reminded to pay attention to the details. I would have scoffed at .2 degrees and muddled on. Thanks to you, should that ever happen, I will remember your story! Hope all goes well from now on.
Kelly Stoll @Linda
How long ago was your surgery? 8.5 weeks out and no one has said anything about continuing to ... Read more
Kelly Stoll @Linda
How long ago was your surgery? 8.5 weeks out and no one has said anything about continuing to check temperature daily, part first month. Should I be?
Linda Wiebe My LVAD surgery was 6/21/18. Due to my experience I would and I might just go to the ER and have the ... Read more
Linda Wiebe My LVAD surgery was 6/21/18. Due to my experience I would and I might just go to the ER and have them call your coordinator. I'm so grateful I did as instructed. I felt good the whole time but if I would have waited the infection would have taken over. As it was I was in the hospitals for a total of 8-9 days and had the penicillin ball for 6 weeks. Could have been soooo much worse!
The 9 month follow up was good. Both of my sisters were able to go with me so we had a sister trip. They have been a strong support for me. My husband and ...Read more
The 9 month follow up was good. Both of my sisters were able to go with me so we had a sister trip. They have been a strong support for me. My husband and daughter have been very helpful as well. I don't think I would be doing as well as I am without the support I have had. I am praying the heart gets stronger and stronger. I do rehab and walk as much as I can. I am able to walk 1/2 mi. in about 15 min. I do bruise easily due to the blood thinner. I still have some limitations but they are decreasing. I am taking more medication than I have ever taken in my life and this will not decrease. I am having difficulty balancing the INR and the diabetes. This site has been a good support for all heart issues.
Sonia M God bless you and your supportive family. I’m also lucky and grateful to have a loving family bes ... Read more
Sonia M God bless you and your supportive family. I’m also lucky and grateful to have a loving family beside me. Very happy for you. Wish you all the best with your recovery.
I am going to SLC, Utah this next week for my 9 month follow up post LVAD surgery. On Christmas Eve I spent 5 hours in the ER and then on Christmas Day I spent ...Read more
I am going to SLC, Utah this next week for my 9 month follow up post LVAD surgery. On Christmas Eve I spent 5 hours in the ER and then on Christmas Day I spent 8 hours in the ER and was finally admitted to the hospital with a blood infection. After 2.5 days in the local hospital I was flown to SLC due to the local hospital not knowing what to do to help me with the blood infection. I think they are afraid of the LVAD. I was not ill and had energy. I was in the hospital in Utah for 6 days. They had me on antibiotics and checked everything they could check to determine how I got the blood infection. It turns out the NM CDC discovered what type of infection I had. It was granulicatella, which is a bacteria found in everyone's mouth all the time. Somehow it got in my blood, mystery to us all. I am fortunate to have a sister that could spend the time with me in Utah. She drove 5.5 hours the day after I was admitted to the hospital in Utah and stayed the entire 6 days with me in Utah. We were busy the entire time, we laughed a lot with each other and with the nurses. I had to do the Penicillin Ball through a PICC line for 6 weeks. I went to the local hospital after I got home, to the outpatient nursing clinic on a daily basis to have the ball changed. The nurses at this clinic were awesome. I was kind of sad the 6 weeks was up and I would not be going to the clinic anymore. I have progressed with my rehab and am doing more physical activity. It feels good to be able to do more and feel good. I am not where I was prior any heart issues but much better than prior the LVAD surgery. I believe the general population needs to know more about LVADS. I have started a support group for LVADers and Caregivers of LVADers as well as possible LVADers. There are 8 LVAders in our community and I am the only female. The hospital in Utah told me that more men have LVADs than women. I am also working on a letter to the editor to the local newspaper to get the word out about LVADS. Don't know if the general public is interested or not but I think they should know about the LVAD. I am having difficulty balancing my INR and the blood sugar for the diabetes. My diet or medication has not changed but the INR went up to 3.7 and this week to 4.2. This means my blood is too thin at this time. I will eat more vitamin K foods to help thicken up the blood. Utah has come several times to train hospital staff and first responders about the LVAD. I have gotten clues that more medical people have heard of the LVAD but know not much about it same with first responders.
As I said a month ago I am post LVAD surgery and am able to do more than I have been able to do in 3 years. While in Utah I attended a support group for LVADers ...Read more
As I said a month ago I am post LVAD surgery and am able to do more than I have been able to do in 3 years. While in Utah I attended a support group for LVADers and the hospital knew a lot about the LVAD. I have confidence in their care. I was anxious about coming home to no medical support. The providers and first responders here do not know about the LVAD. I have initiated some training from Utah to the first responders and to the hospital staff along with the heart clinic. I participated in the trainings and folks were receptive but need much more training. My confidence is still not here for the support. If I need anything or have any questions I call Utah and they are so very helpful. They do not treat me or any of their patients like a number or a task. They build relationships with the patients and hold themselves accountable for their actions. Since there is no support group here I am starting one. There are 8 LVADers' here including me. The support group is very beneficial for asking questions and knowing you are not the only one in this state of health. I am attending rehab 3 times per week and am planning on going hiking next summer. I have been applying some medical tape for sensitive skin to my scar to help prevent keloiding. My scar is very sensitive and down right painful at times. The tape is helping I think. Keeping track of blood pressure, blood sugar, heart rate, INR (is a weekly or several times per week depending on results), weight, the LVAD numbers, the fluid and sodium intake is a daily task. This takes roughly 30-45 minutes per day, so I do it in the mornings. I am grateful for all that I have and that the good Lord isn't finished with me yet. I have not had the emotional discharge that other LVADer's have had so am grateful for that as well.
I had my 3 month follow up post LVAD surgery. My EF has improved from 11% to 20-30%. I am doing well. I am hoping when I have the next echo it will show ...Read more
I had my 3 month follow up post LVAD surgery. My EF has improved from 11% to 20-30%. I am doing well. I am hoping when I have the next echo it will show the EF up to 40% or more. The only bad news I had was that the Aortic valve is not working. The pump is doing all of the work. They don't know if the valve will start working or not as some don't. Just thought I would share.
Gerald Poulton Thank for sharing Linda, we will just have to 🙏That it does start working.
Barbara Wood Hope your valve starts working...take care Linda:)
My daughter and I have had multiple conversations regarding one's happiness. So the question is: Are you happy? That depends on one's definition of happy. ...Read more
My daughter and I have had multiple conversations regarding one's happiness. So the question is: Are you happy? That depends on one's definition of happy. Through lots of personal review I have come to the conclusion that I am very happy. The definition of happiness is different for each person. Yes, I still have moments of frustration like anyone else. Of course I will always wish for more $, more time, and more energy and of course world peace. I have so much to be grateful for. I have wonderful support from some family members, 3 siblings, 2 sister in laws and 3 brother in laws, several nephews, several cousins, several aunts, Mom, husband, daughter and grandchildren along with friends and my PCP. I am almost 3 months post LVAD transplant and am thankful every day for life.
Just 3 months ago my cardiologist told me I could either check into hospice or have the LVAD surgery. I said that I didn't care what happened so he said if I would follow through he would make arrangements for the surgery. I agreed to follow through. At that time I had a face to face, (life review), with the grim reaper. He and I had a lengthy conversation. I decided if I could not find a medical way to change my failing health that I would give myself over to him. I even filled out an advance directive to this effect. I asked for no heroic measures to be taken to preserve me or to revive me I had decided that if I died then it was not actually my choice, it was God's choice. He allowed my life review and choice to enter the University of Utah hospital. I was flown to Salt Lake Utah and admitted to the University of Utah hospital which is # 1 in the nation for LVAD surgery. When I woke up in ICU I remember telling myself, "ok, you didn't die". I knew then I still had work to do here on earth. Everyone there was wonderful and helpful.
I was in the hospital for 5 weeks and in Utah for 2 months. I have been home for 6 weeks.
Since that time I have been allowed to experience life and all it has to offer in a new way. I now have a new normal for my life style change. I have had many experiences that I once took for granted. Listening to the wind, Seeing all the colors of the world, being back in the world, walking, talking, seeing, feeling, moving, eating, doing things for myself, having a genuine laugh, and spending time with my close family. I have plans to go hiking next summer, mushroom hunting, doing crafts now and cleaning the house along with cooking!! Yes, cleaning the house and cooking and I don't mind cleaning up after Rob does some cooking! Maybe I am not totally recovered yet!! There are some activities that I have given up, swimming, playing in the water, camping with no electricity, (not that I did this but sure can't do it now). I am now cleared to drive but can't shower yet. How's that for recovery?!!
Each day is one more day that I have due to medical advances thanks to many before me that were willing to take part in medical trials, experimental therapies, and medications. I hope you can all find something to be happy for today and every day. Don't take things for granted as nothing is a given and there are no guarantees'!
Jennifer McInerney My Dad, who lived to be 90 once said "every day when I wake up and take my first conscious breath, it ... Read more
Jennifer McInerney My Dad, who lived to be 90 once said "every day when I wake up and take my first conscious breath, it's
A good day". I always try to wake up with that thought!
Jennifer Barnett Sounds like you are doing really well, onwards and upwards. I feel happy now 3 months after OHS, it d ... Read more
Jennifer Barnett Sounds like you are doing really well, onwards and upwards. I feel happy now 3 months after OHS, it did make me appreciate things in life more and not to take things for granted. I remember clearly after getting home how beautiful the sea looked, how wonderful wind blowing on my face felt and how I loved just being at home. I also want to focus more on the things I enjoy doing even though I'm now back at work I will make more time for my art, exercise and reading.
Good luck with your ongoing recovery but don't overdo it, sometimes when you're feeling good its tempting and then later you're tired out.
Jennifer McInerney Thanks Jennifer, your words are definitely inspirational. I am still waiting for OHS, which has its o ... Read more
Jennifer McInerney Thanks Jennifer, your words are definitely inspirational. I am still waiting for OHS, which has its own set of challenges. However I think living in gratitude and faith makes it easier.
Linda Wiebe Thanks Jennifers for the reminder to not overdo and for the positive thoughts.! It is tuff to not ... Read more
Linda Wiebe Thanks Jennifers for the reminder to not overdo and for the positive thoughts.! It is tuff to not overdo as feeling good leads to doing more and before one knows it, they have overdone. I am still recovering and go to Utah at the end of this month for my 3 month follow up. I have a full day of tests scheduled while there.
Jennifer Barnett Hope all goes well with the follow up and tests.
Linda Wiebe Just had my 3 month follow up and was told the heart catherization was beautiful and that I must be d ... Read more
Linda Wiebe Just had my 3 month follow up and was told the heart catherization was beautiful and that I must be doing things right as I look fantastic. I go back again in 3 months. I appreciate more each day. I tried for 2 years to recover from the mitral valve replacement surgery and just could not and the heart was getting weaker as time went on. I can certainly tell a difference between that surgery and this one.
After surgery I could not imagine what it would be like at the 2 year mark! I have to say, it is much better than I thought it would be. Since the surgery ...Read more
After surgery I could not imagine what it would be like at the 2 year mark! I have to say, it is much better than I thought it would be. Since the surgery I have been diagnosed with Gout, Diabetes type 2, and CHF. I am taking medication for each and can identify symptoms of each. I sure would like to go back. I am working on accepting the new norm instead of resisting. I would love to hear from others about how they are adjusting to their new norm.
Rita Savelis Congrats on your 2 year anniversary. Accepting rather than resisting the new norm is all one can do. ... Read more
Rita Savelis Congrats on your 2 year anniversary. Accepting rather than resisting the new norm is all one can do. It's hard, I know. And I wish you peace and strength.
I notice improvements that seem small to others but to me it is moving forward in my recovery. People don't realize how much energy it takes to talk, to laugh, ...Read more
I notice improvements that seem small to others but to me it is moving forward in my recovery. People don't realize how much energy it takes to talk, to laugh, to get places. I sure took a lot for granted. I do appreciate my support team, my sisters, my mom, friends, a brother, several aunts, sister in law, a brother in law and several cousins. My husband and daughter have been wonderful as well. I must add my co-workers as good support too. This journal has been supportive too, which has been great!! I have learned a lot about the heart and body from this site. It is so good to know I am not experiencing this alone. Others have open heart surgery and go on their own journey. The food I can have without causing any problems is fruit, veggies and meat. No salt, flours or sugars! There are not restaurants that offer meals with limited salt. Most restaurants do not offer heart healthy meals or meals acceptable for diabetics. I think this is unacceptable. Any suggestions on who I can talk with to try to get changes to be made? Most are not health friendly. I have found that asking the wait staff for what I need is the thing to do.
Meredith Bray There are some days when I don't think I'll ever be 100% recovered - I still get occasional twangs an ... Read more
Meredith Bray There are some days when I don't think I'll ever be 100% recovered - I still get occasional twangs and twitches at 29 months! Regarding dining out - I've found that if I speak to the server, that most of my requests can be easily accommodated by the kitchen - no seasoning, sauces on the side, baked/broiled instead of fried, and usually without an upcharge. I'm doing low-carb now, and I gotta tell you, I'm awfully tired of salad when dining out!
-Meredith
Linda Wiebe I am very tried of salad too! I ate out with some friends on Fri. and it was a positive experience. ... Read more
Linda Wiebe I am very tried of salad too! I ate out with some friends on Fri. and it was a positive experience. The first time to eat a meal out. I have had a salad at subway several months ago. Yes, I am doing low carb, low salt. I am finding the buffets are the best places for choices however the self control is harder. I know I will never be as I was prior surgery, I don't feel as good as I did, although there is still improvement. The weather affects me and there is no way I know ahead of time how or when I will be affected. I still have to be careful not to do several physical activities in one day. Yesterday I was having a very difficult time as it was very muggy. I had to go to the store and I barely got what I needed then to the check out and didn't know if I was going to make it to the car but I did! I just sat in the car for a few minutes, the could drive. I sleep off and on for the rest of the day. I had NO energy. The one good thing I have noticed in July is that my heart rate has been in the high 80's most of the month.. YES, I believe it means the heart is getting stronger and adjusting to the new valve. I am thinking this means NO LVAD!! That is very exciting to me!! I have now to balance the blood sugars. I believe I am listening to my body and doing self care as opposed to allowing the heart and diabetes to control me. (even though they are to some degree). I have no control over what they do.
I am still noticing improvements in my energy and stamina. The heart rate is more in the normal range when I am sitting. It was in the 100's now it is in ...Read more
I am still noticing improvements in my energy and stamina. The heart rate is more in the normal range when I am sitting. It was in the 100's now it is in the high 80's. I believe that means it is getting stronger and adjusting to the new valve. I have good days and bad days. 3 weeks ago I did some routine lab work and was called by the heart clinic and told to pack a bag and get to the ER as soon as possible as my blood sugar was 600. That this was life threatening. That was scary. We got there and they gave me 2 bags of fluid and a prescription for metformin then sent me home. My PCP called with an appointment for 2 days later. I went to my PCP and she prescribed the testing tools for me to use to check my blood sugar level myself. I have added this routine to my other one of checking my blood pressure, heart rate, weight, and oxygen level. I have to monitor my salt and fluid intake and now carb intake. I keep a daily journal of what I eat and drink. I am hoping the heart is getting stronger. No, not doing cardio rehab. On my interview day I ended up in the hospital and too much time passed so I could not meet the ins. deadline. So can't do rehab. I walk as much as I can and I am noticing an increase in my stamina. I am eating lots of meat and veggies. I am learning a lot about the food we eat and about all the foods I can not have. What a class this life is!!
Last week I had 3 wonderful days. I felt almost as good as I did pre-surgery. The 4th day I was exhausted and I had not done anything different then the ...Read more
Last week I had 3 wonderful days. I felt almost as good as I did pre-surgery. The 4th day I was exhausted and I had not done anything different then the 5th day I am back to a really good day. I don't know if it is from taking 2 lasiks per day or just the time. Either way I love it. I have been able to go longer before I nap. When I do rest I fall asleep for 1-2 hours. Today I was able to sweep and mop my large dining room/kitchen/sunroom. Of course I had to stop and rest several times but I got it done, for me, the first time in 14 months. My heart rate has finally been decreasing from 100 - 87 at times....I feel this is improvement, the heart is strengthening!!!
Earlier I shared that I had a bad cough since surgery. I told the cardiologist about it and he changed the Lisinopril to Lorsartan and the cough is going away. ...Read more
Earlier I shared that I had a bad cough since surgery. I told the cardiologist about it and he changed the Lisinopril to Lorsartan and the cough is going away. It feels so good to not be coughing all the time. I am excited summer is here, hopefully I can spend more time outside this year. Last year I didn't get a summer. We planted some tomatoes and will go look for some other things to plant.
Has any of you been diagnosed with CHF? Did the heart surgery make improvements enough that the dx of CHF can go away? linda
Emily Rowley I was born with Congenital Heart Defect/s where oxygen rich blood was not reaching parts of my body s ... Read more
Emily Rowley I was born with Congenital Heart Defect/s where oxygen rich blood was not reaching parts of my body such as my brain, instead leaking back to my Lungs and other chambers of my heart. Is this the same or similar condition you have been diagnosed with? And yes surgery did correct this ☺ without the need for LVAD or Pacemaker luckily (but if it's needed then it will help your heart which is always a great thing). Feel free to ask any questions you may have ☺ Hope this helps, Emily.
Linda Wiebe Yes, sounds like my mitral valve regurgitation prior to replacing the valve. I have an ICD to help w ... Read more
Linda Wiebe Yes, sounds like my mitral valve regurgitation prior to replacing the valve. I have an ICD to help with the heart rhythm.
We live in Farmington, NM and my sister and brother in law live in Montrose, CO. They asked if we could go over to house and dog sit so they could go to their ...Read more
We live in Farmington, NM and my sister and brother in law live in Montrose, CO. They asked if we could go over to house and dog sit so they could go to their grandson's college graduation in Fort Collins, CO. We went and in going we had to go over 3 passes. I have not been to 9,000 feet and higher for 16 months. The Dr. gave me the go ahead as long as I had oxygen available. We went over 2 passes that are over 10,000 feet and one that is over 13,000 feet. When we had been there for a few hours I got so sick all I could do was go to bed. The next day all I could do was sleep and watch TV. The second day I felt much better. To come back home we went another way which was going over 1 pass that was 10,222 feet high. We ran into snow, rain, hail and snow. I did not get sick. The next day I was tired but not exhausted! That is exciting. Through this ordeal I had the constant support of my husband, my sisters and my daughter. It was kind of scary. I am going to do the suggestions that were made and hopefully I can lose weight, get my EF up and balance the Coumadin level. No I have not been referred to rehab again. The first time I was referred I ended up in the hospital on the day I had scheduled the consultation. Since then the time (window) to be in rehab according to Medicare has passed. So I will need a different diagnosis in order to do rehab. With my EF being so low it would not be good to do the rehab at this time. I do walk as much as I can, I tire easily and the afternoons are hard to do much with. I have to schedule my activities, like sweeping, doing dishes, etc I can't go from one to the other like I used to. I want my EF to be up to 55 at least. Soooo, here's to moving forward.
Lilly Black Linda, my son lives in CO with his wife. The first time I went to visit was before my aortic valve re ... Read more
Lilly Black Linda, my son lives in CO with his wife. The first time I went to visit was before my aortic valve replacement. It was really, really tough on me. I had chest pain each time I walked. I was breathless all the time when I was outside. After my surgery, I had no bad side effects at all when I visited them again in Fort Collins. I was so happy! But now I'm even happier because my son and his wife are moving back to California and will be a mere 40 minute drive from me....so thrilled! Rehab, or just plain walking will really help you. Good luck and feel better!
I had the TEE redone and was told my EF has improved from 15% to 20-25%. The Dr. and I both were disappointed and expected it to be higher. I still have that ...Read more
I had the TEE redone and was told my EF has improved from 15% to 20-25%. The Dr. and I both were disappointed and expected it to be higher. I still have that awful cough and had a follow up appt. with the Dr. on the 11th. He said things are better, not pretty good or much better just better. Which is improvement and I will take that. He changed some medication and he said to do what I can and when I am tired to stop and rest do not push on. He shared that my heart has been weak all of my life and now with the new valve the heart muscle has to get stronger to pump the blood as much as it should be able to do. I did not know my heart was weak. This was discovered when I blacked out and fell flat on my face. I went to the ER as my legs hurt terribly. I had broken my little toe on my right foot and pulled all the muscles in my left leg. I did not hurt any where else. 3 months later I had a shortness of breath that was not normal along with wheezing at night which was not normal for me. This is how this all got started and I am thinking the fall was a blessing in disguise, although not wanted. I am now able to take a shower with the door completely closed! Oh the simple things that bring pleasure! The cloudy days are not as bad as they were, more improvement. I am also going about 1 hour longer in the afternoon before I have to rest. My blood pressure is decreasing and the heart rate is decreasing which is an improvement. My memory is not as good as it was but is improving. I have had an awful cough since the surgery and medication so the Dr. changed the medication. We shall see how that goes. Now I have to focus on losing wt. which is difficult as I have to monitor the salt and the fluid intake along with portion size and can't do much physical activity. Has anyone out there had this experience, if so what worked for you?
Jean Raber Hi, Linda! My GP started her career as a nutritionist and gave me this tip.
Jean Raber Hi, Linda! My GP started her career as a nutritionist and gave me this tip.
Get a small notebook. Write down your salt and fluid intake. Ditto everything eat and how much. If possible, just record for a week without trying to make changes to get used to writing things down and to arrange the info the way you want. You'll find that you WILL probably make changes because you're more aware of your intake.
At the end of the day, add up everything on the page: salt totals, number of portions for each category on the food pyramid, fluid totals. Salt and fluid have to be maintained every day, but if you overeat one day, you can back off slightly for the next few days.
I've done this every day for about 18 months. I've lost 20 pounds, which came off slowly and has stayed off. I eat better. I get more exercise (something I added to my notebook) and I keep better track of strange heartbeat episodes and other symptoms.
My habits have also changed, so recording is easier, and you get a sense of accomplishment by being compliant.
Many people also find Weight Watchers helpful if they prefer group support.
You can do this! I'm over 60, and old dogs can learn new tricks.
Clare Auten I have an app called My fitness Pal that I log my food on. You enter something like, carrots and the ... Read more
Clare Auten I have an app called My fitness Pal that I log my food on. You enter something like, carrots and the serving size and it keeps track of the nutrients. You can even get fancy and scan bar codes and the item comes up. The data base also includes restaurant food. At the end of the day you can see a report with calories, fat, sodium, etc for the day.
Denise Campbell Has your doctor approved cardiac rehab? I thought this is what's suppose to strengthen the heart? ... Read more
Denise Campbell Has your doctor approved cardiac rehab? I thought this is what's suppose to strengthen the heart?
Linda google Dr. Sinatra cardiologist. Then Google Pycnogenol, D-Ribose, COq10, Magnesium, and Carnit ... Read more
Linda google Dr. Sinatra cardiologist. Then Google Pycnogenol, D-Ribose, COq10, Magnesium, and Carnitine.
I stress these three as a package Pycnogenol, D-Ribose, COq10.
I have taken D-Ribose for years as a pre-workout supplement even before I know I had a heart problem and I believe it has contributed to my EF staying between 55 and 60. Evidence suggests it helps Heart EF.
Pycnogenol is new to me but I do feel something different since I started taking it.
Of course asks your doctor 1st before trying any of this stuff.
We were not able to successfully get the TEE done in Feb. We were successful 4/26. The EF has increased from 15 to 20-25% . Will meet with the Dr. in May ...Read more
We were not able to successfully get the TEE done in Feb. We were successful 4/26. The EF has increased from 15 to 20-25% . Will meet with the Dr. in May to make a plan for my future. I had mixed feelings of grateful for the increase yet disappointed it was not higher. The Dr. and I were both disappointed at the little improvement. I am glad there was some improvement. May be I am just slow at improving. I have been researching all the avenues he might come up with so I can be prepared. Of course it might be as simple as changing the medication...Don't know. I am impressed with all the tools available in the medical field. Anyway moving forward hopefully since there has been some improvement maybe it will make it easier for the heart to continue strengthening. I appreciate all the support I have received.
Kate Watson Good that it's improving though! What surgery did you already have done?
Ashley Molyneaux Stay positive and patient. The heart is an amazing organ and can recover after years. :) If you fee ... Read more
Ashley Molyneaux Stay positive and patient. The heart is an amazing organ and can recover after years. :) If you feel good, the extreme measures you mentioned in your older journal post probably won't be options. I bet they'll just switch around your meds and hopefully after that you'll continue to see improvement. Hope everything keeps going up from here!
Today is my 1 year heart birthday!! Have the TEE scheduled now for the 26th. I am hoping that will be a positive finding. As far as I can see at the moment ...Read more
Today is my 1 year heart birthday!! Have the TEE scheduled now for the 26th. I am hoping that will be a positive finding. As far as I can see at the moment is the options of: 1: either another open chest surgery, 2. Have the LVAD (Left Ventricle Assist Device) implanted into the heart or 3. Nothing can be done so live with it as is. I don't like the options of course!! The TEE is to see if possible why the EF is still 15%. I need to figure out how to be more active. I have noticed that I am beginning to feel more like myself yet different as my priorities are so different now and my tolerance is very low. The one year mark is something special. My co-workers gave me a wonderful surprise of a tree of life pendant and beautiful white roses with beautiful supportive thoughts attached. I am so rich!!
I am excited about reaching the 1 year mark. I hope I am not expecting too much, but do hope my heart gets stronger. I can tell there has been improvement ...Read more
I am excited about reaching the 1 year mark. I hope I am not expecting too much, but do hope my heart gets stronger. I can tell there has been improvement since the 6 month mark. I still am not out of the woods for possibly another surgery, depends on what is discovered with the TEE. The EF should be more than 15 by now. I have mixed feelings regarding doing the TEE. I want to know what the heart is doing and I don't want to know. The valve is working wonderfully according to the DR. The ICD is still painful, not sure if it has helped or not. The incision from the heart surgery is still super sensitive. I have to be careful what blouse I wear as button down ones rub too much. Just recovered from a 12 day sick time, not sure what I had but don't want it again. I remember complaining about how slow I had to move in order to not raise my heart rate and now I am moving faster although still on the slower side. I still have to remind myself to slow down. I am thinking I can close the bathroom door all the way when I shower now, but am reluctant to try it. There are many things that we take for granted that are so in my face to recognize. I sure do appreciate things more and my priorities are different. I feel like a different person in a lot of ways. I am still a pretty private person. I have had to share more about myself in this past year than I have ever shared in my life, it has been hard although freeing as well. It has been interesting to find out the actual support that is present. I think I will try to do some yoga. The 15th (tax day) is my heart birthday! This year has sure been a different kind of journey. I don't want to repeat it for sure.
I can't believe a year is about up since the surgery. It has gone by quickly yet slowly. I have made some good progress since surgery. It has been a difficult ...Read more
I can't believe a year is about up since the surgery. It has gone by quickly yet slowly. I have made some good progress since surgery. It has been a difficult journey and I am not wanting to do this again for sure. I am still pretty limited in activities and I tire easily although not as quickly as 6 weeks ago. My incision is still super sensitive. I wonder if that will change? I have been coughing since surgery and the chest muscles are sore, feel bruised. The coughing is finally decreasing. I did not just have the mitral valve replaced, I got an ICD pacemaker 2 months after surgery due to having an A-Fib episode and the EF being so low. I am not sure how to strengthen the heart. We do not know why the EF is still so low. I have a good support system from co-workers and family, which helps a great deal. My sisters, husband, daughter, mom, a brother, brother and sister in law, several aunts and 2 cousins have been so wonderful. As for co-workers they are so supportive, it is because of them that I can do some work.
Clare Auten Nice to be at that one year mark! As far as scar sensitivity, I had that too. My scar was hypertroph ... Read more
Clare Auten Nice to be at that one year mark! As far as scar sensitivity, I had that too. My scar was hypertrophic. I did kenalog injections. They were painful but they took away the sensitivity and itching. My scar is still red and purple in spots but it has flattened and doesn't hurt!
Denise Campbell What is EF? I too had mitral stenosis. I've had a replacement with mechanical valve. My sc ... Read more
Denise Campbell What is EF? I too had mitral stenosis. I've had a replacement with mechanical valve. My scar is sensitive. And knotted up. I hope it flattens.
Clare Auten Linda, I should mention that the plastic surgeon I talked to recommended the Scar strips that stick o ... Read more
Clare Auten Linda, I should mention that the plastic surgeon I talked to recommended the Scar strips that stick on the scar instead of creams and such. I was 18 months or do post op when I talked to her though. Either of you can email if you want.... autenclare @gmail.com
Linda Wiebe Thanks Clare, I will look for the strips. I have been using the Benadryl jell which has been working ... Read more
Linda Wiebe Thanks Clare, I will look for the strips. I have been using the Benadryl jell which has been working pretty good. I put it on 2 times per day. I still can't wear a bra though.
Since we could not get the TEE done so......of course it will have to be rescheduled. Since the TEE I have come down with bronchitis. It is the time of year ...Read more
Since we could not get the TEE done so......of course it will have to be rescheduled. Since the TEE I have come down with bronchitis. It is the time of year for that. Anyone have some really good vegetable recipe please send them to me...I am looking for squash, zucchini and eggplant. My Coumadin level was great this last time so I get to go for 2 weeks before I have it checked again.
I expected to be doing cardiac rehab by now. I have been referred 2 times and both times something has come up either with my health or with the referral not ...Read more
I expected to be doing cardiac rehab by now. I have been referred 2 times and both times something has come up either with my health or with the referral not meeting the ins. requirements. I am feeling both relieved to not be doing rehab and disappointed as I want to get further along in recovery. I will be having a TEE (Trans Esophageal Echocardiogram)tomorrow to see what is happening on the back side of the heart since my EF is still at 15%. I am feeling the best I have felt since the surgery but not as good as prior surgery. I am walking as much as I can which is not as much as I would like. I still get tired but not slammed against the wall like I was so it seems to me there is much improvement so I do not understand the 15% only. The Dr. reported that the new valve is working beautifully....so there is some good news!
The heart muscle does not seem to be getting stronger or the EF would be higher. Guess we will find out. I am still having much difficulty wearing a bra. I think I am caught in the middle of wearing one and not. To wear one is painful on the ICD and the incision and to not wear one I feel exposed and uncomfortable,.....goodness...what to do.
11 months post op is quickly approaching. Just had an echo done and my EF is still 15%. I will be having a TEE on Friday so they can see the back of the ...Read more
11 months post op is quickly approaching. Just had an echo done and my EF is still 15%. I will be having a TEE on Friday so they can see the back of the heart. I feel much better than I have, not as good as pre surgery though. I would have bet my EF would be 30-35%. I would have been wrong! The Dr. was shocked as well so wonder what is going on. I don't know if rehab would help strengthen the heart or not. The valve is doing beautifully I was told. Sooo what is the difficulty?? What a conundrum!!
More has been changed and it is helping. Last week there was an adjustment on the ICD to speed up the pulsing so the bottom of the heart is synchronized with ...Read more
More has been changed and it is helping. Last week there was an adjustment on the ICD to speed up the pulsing so the bottom of the heart is synchronized with the top and the heart does not have to work so hard. I have felt better and don't get soooooo tired. The Metropolol was changed to Metropolol ER which is taken 1 time per day and supposed to help strengthen the heart. I go for an Echo on the 3rd. I am excited about finding out how strong the heart is.
Feb. will be the 10 month post surgery. Seems like it was farther away than that and yet not that long ago. Just last week I felt an improvement in my well-being. ...Read more
Feb. will be the 10 month post surgery. Seems like it was farther away than that and yet not that long ago. Just last week I felt an improvement in my well-being. I didn't think I would ever feel that good again. I still have a distance to go to feel as good as prior surgery but I can tell I am making progress. The incision is still very sensitive, can't wear a bra yet, don't know if I will ever wear one again. The strap lies directly on the ICD so the pressure hurts, and the center of the bra rubs on the incision with movement. I tried padding the area but the padding kept sliding either down or up and would poke out of my blouse. That didn't look too good. I have to watch my physical activity daily so I don't over due as then it takes me 2 days to recover. I am still on Coumadin and still use oxygen at night only.
I walk as much as I can and sometimes I can walk more than other times. The weather plays a part in how my day goes, the humidity and barometric pressure ...Read more
I walk as much as I can and sometimes I can walk more than other times. The weather plays a part in how my day goes, the humidity and barometric pressure really effect me. My incision is still very sensitive. I still can't wear a bra, My energy seems to be way down about 12 or 12:30. Then I have to rest for a few hours. I am sleeping through the night now and I have to plan my physical activities or I am down for a few days. I am hoping my EF is up to 30 or more next month when I do the echocardiogram. I was down to 15, I know I am much stronger than that now.
Glad to hear you are making progress, but it sounds like you know your body well and you are listenin ... Read more
Glad to hear you are making progress, but it sounds like you know your body well and you are listening to it!
Wanda Mroz Everyone recovers at their own pace. Sounds like you are slowly making progress. Hang in there... B ... Read more
Wanda Mroz Everyone recovers at their own pace. Sounds like you are slowly making progress. Hang in there... Be positive. I am drained by end of day too. But only almost 5 months post op.
Bob M Likewise, I love to walk ... "I walk by faith". Although this is winter time in Chicago, I am fortuna ... Read more
Bob M Likewise, I love to walk ... "I walk by faith". Although this is winter time in Chicago, I am fortunate that I can walk during my lunch hour indoors where I work.
I have gone back to work on my own schedule and that seems to be working for both my boss and myself. I work from 4-6 hours per day and on days the humidity ...Read more
I have gone back to work on my own schedule and that seems to be working for both my boss and myself. I work from 4-6 hours per day and on days the humidity is high I stay home and work or don't. It does not matter if I go to work or not I can only do things for 4-6 hours prior to resting/sleeping. I am grateful for the time and energy to do things. I have been taking coumadin since June 18 when the ICD-pacemaker was installed. It has been difficult to try to balance the blood thickness so I stopped trying and it seemed to do better. One less thing to manage only now the level is too high. I am getting used to a slower lifestyle so that is good. I do get frustrated that it takes me longer to get things done, like sweeping,, as I have to rest before I get done. I am going to start walking again daily knowing this could help build up my stamina and strengthen my heart.
Liz Burroughs I'm glad that you are able to have a work schedule that works for you. I think you have a good idea t ... Read more
Liz Burroughs I'm glad that you are able to have a work schedule that works for you. I think you have a good idea to start walking again. Best wishes for your continued recovery! Take care. Liz
Mary K Thanks for the update, Linda. I agree with Liz about the walking. Is there any way to find some suppo ... Read more
Mary K Thanks for the update, Linda. I agree with Liz about the walking. Is there any way to find some support in your exercising? Walk with a friend, gym? I have found that it helps a lot. And fitbit tells the truth!
Well, I am feeling better than I thought I could, Almost as good as pre surgery however my life is different as my routine and abilities are different. I know ...Read more
Well, I am feeling better than I thought I could, Almost as good as pre surgery however my life is different as my routine and abilities are different. I know I had a very touch and go start and am amazed at the progress I have made, no longer touch and go!! My stamina is improving and I can concentrate. My hand writing has improved too! I am looking forward to working on my projects now and I feel like my old self is emerging. Maybe the pink bunny will evolve. I still have to watch my daily activity level but it is not in slow motion any more, PROGRESS for sure. That was very frustrating. I am thinking my EF is at least 30 by now, maybe higher! YES!! My heart is getting stronger each day!! I still can't wear a bra as the middle rubs on the incision and is very painful. The strap on the left side puts too much pressure on the ICD-pacemaker, too painful. I am not sure what to do, I have tried back hook and front hook bras. Anyone else have this issue?
Clare Auten I didn’t have issues with bras but my scar was very sensitive. Maybe talk to a dermatologist for s ... Read more
Clare Auten I didn’t have issues with bras but my scar was very sensitive. Maybe talk to a dermatologist for some ideas. I actually saw a plastic surgeon. You can read my journal. The sensitivity is gone and it was covered by my insurance.
Gerald Schaffer It sounds like you have turned a corner and headed towards a full recovery. Sometimes it takes longer ... Read more
Gerald Schaffer It sounds like you have turned a corner and headed towards a full recovery. Sometimes it takes longer for some people just never give up hope.
Though having no personal bra wearing experience, lol, maybe you could try a sports bra or a genie bra. My wife will wear the genie bra and it seems to provide enough support for her.
Tina Maroon I did have issues with wearing a bra. My scar is still very sensitive 6 mo. post op.
W. Carter The sun will start looking brighter soon! One thing that helped my heart function which was at 30% is ... Read more
W. Carter The sun will start looking brighter soon! One thing that helped my heart function which was at 30% is a beta blocker Carvedilol taken twice a day. I have been taking it for 3 years. It really works good for chf. I am almost 1 year post op from mech. heart valve and vein graft and walk 4-5 miles a day, 5 times a week with no fatigue.
Linda Wiebe W. Carter I was on Carvedilol and then they stopped it for some reason. My EF was at 15% I have a t ... Read more
Linda Wiebe W. Carter I was on Carvedilol and then they stopped it for some reason. My EF was at 15% I have a tissue valve and am walking more but not as much as you. I hope to have a echo next month to see how much my hrt has strengthened. I do as much as I can but the afternoons are pretty much down times.
I have been doing more and more for myself and in activities as well so I returned to work on a "as can do" basis. My boss and co-workers have been wonderful. ...Read more
I have been doing more and more for myself and in activities as well so I returned to work on a "as can do" basis. My boss and co-workers have been wonderful. Monday I planned on going into work however as I was beginning to leave for work, my body felt like it was filled with cement. The humidity and barometric pressure was up so needless to say I stayed home and did nothing. The rest of the week I was able to do at least 4-5 hours of work before crashing. I work 2 miles away from home and several times I thought I would have to stop along the street and nap in order to get home. I am just not good yet at giving in immediately to the "crashes". I am learning, I hope. I have noticed that when the humidity and barometric pressure is up the incision hurts and I have NO energy. I am able to sleep all night if I don't nap in the day so I try not to nap but do rest. I am not in rehab as yet, wonder if that will be one of the next steps? I will have the ICD checked sometime next month and in Feb. will have another echo done to see how strong the heart is getting. The ICD was implanted 4 months ago, my shoulder aches and there has been some throbbing pain around the ICD, has anyone else had this experience? I also have discovered some "rocking" when I am very still, seems it is my heart rate that is making my body rock, could make me motion sick if I didn't move myself around. Looking forward to having 9 months post!
W. Carter Linda, that is pretty normal for 6 mo. post op. I remember my heart would beat so hard it felt like i ... Read more
W. Carter Linda, that is pretty normal for 6 mo. post op. I remember my heart would beat so hard it felt like it would jump out. At 10 mo. I still have pain in my left shoulder and arm on occasion. It has gotten a lot better than before. Your recovery will get better it just takes time.