Linda's Journal

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.

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

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 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.

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.

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 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 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.

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'!

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.

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.

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 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. 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

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.

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?

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.

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 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 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.

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 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 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 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. 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 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.

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.

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?

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!

It is just past 6 months post, that is nice to say. Looking forward to 12 months post. I still have sternum discomfort, I have been watching the salt and fluid intake and am still gaining weight, ounces each day but still gaining. I am not sure what to do other than decrease my portion size, which is not large to begin with. I don't want to gain weight, I have been more active, not doing exercises although am walking a lot more, go grocery shopping etc. I feel good about being more active, have to rest often but am still doing things. I am thinking others have said that around 12 months their heart rate had normalized. Mine is doing much better as long as I take the medication every 12 hours which is not a problem. Night time the heart rate goes up easily, but during the day it is more normal. Linda

I am excited about this past 6 months being behind me, I am still making progress. My heart rate can go up and I don't have the shortness of breath! I can move at a more natural speed and my heart rate not go up. I do well in the mornings and then by 1 I am very tired and sleepy. I can do more but need to rest often. I am having difficulty balancing the salt and fluid intake and my activity level. With activity comes coughing and with coughing comes a higher heart rate. The heart rate is normalizing. I am finding that I need to be cool or I cough. I guess the season change will help me as it is cooler. My incision is tender and on the sides of the incision is tender and sometimes burns. I am applying vitamin E on it daily. I am keeping myself busy as my concentration has been improving so I can do some projects. I am finally getting used to not going to work and it is time to return, part time. I will have a monitor set up at home so the heart clinic will be able to monitor the heart rate from there. I have gone grocery shopping several times now and not sat down but I am exhausted by the time we get to the car. Looking forward to seeing improvement there.

I have now been standing in the shower! It is easier than sitting which surprises me. Yes, I believe I am now on the healing road finally!! It is taking more time than I anticipated. There is more good news, now days mindfulness has become into awareness of the mental health profession. I am very aware of when I am getting anxious, too hot which is not totally new but now it is in the beginning not the middle. I am changing how I take care of myself by setting up stronger boundaries so the anxiety and the heat is not in charge of my health. I really do appreciate my heart sisters and brothers sharing their challenges, it really helps me. I can now walk 50-60 feet without stopping, that is progress. I am resting when I begin to feel that drained feeling. My heart was weak prior to the surgery, the mitral valve replacement weakened it more so now to strengthen it. The ICD will help strengthen it as well. I am on a very fine line in pushing forward and not overdoing!! I have to monitor the salt and liquid intake and my activity in order to not overwork the heart. This is why recovery has been so difficult for me. linda

I appreciate all the responses. Lots of good advise and I am taking it....Thank you so much for the encouragement and foresight. I have to remind myself to be patient with myself. I do find that I don't have the "rush" sense now when I am doing something!! YEAH!! I find mornings are easier than the afternoons. The afterfoons are full of sleepiness and just not having much energy so I take a nap for however long. I will "practice" patience with self!! I believe that with the improvements that I have made mean that my EF has increased. I am going to do a bit more activity as I am so hoping for a good EF in Feb. Like 50 EF when I go for the echo in Feb. I am not doing rehab yet but I am walking a bit more and have a more normal posture. The ICD was "installed" 2 months after the MVR and it seems to be doing well. I am hoping to be able to stand throughout my shower tomorrow, if not at least part of it. I will keep the slow and steady mantra. I keep telling myself my heart is healthy and strong. I will accept that it will take much time for recovery and I am grateful to be on that road. Thank you for your support everyone. linda

I am happy to report there is steady improvement, yes, I still have to "not over do", the heat gets to me, exertion is as bad as the heat. How does one push a bit forward and not over do? I have been doing more and I can concentrate more. I am very sensitive around the incision, the weight of my clothes is painful at times. I was given permission to go to Durango several weeks ago. The altitude is a bit higher than we are and the Dr. said he didn't want to "rock the boat" so held back giving me permission. I did go to Durango to the dentist and everything was fine, so I can go again. Progress. I notice that I am not walking as fast as I did prior surgery, I am still not to do much walking but do some. Here it is 5 months and I appreciate that others on this journal have shared some of the difficulties they have had as well. Does anyone have a pacemaker as well? Has anyone had a pump placed in the heart? Hope everyone has progress. blessings!! linda

I have not been on the journal as I get so discouraged, however the last 3 weeks have been so much better. Went to my Dr. appt. last week and he said I was doing well enough that I don't need to come back for 6 months unless something come up. I also got permission to travel 50 miles to a dental appt. The altitude was a concern but I did great!! WOW!! what an improvement after all of the trials and traumas. I sure do not want any kind of repeat of the past 4 months so am doing all I can for self care. I am looking forward to being more active. I am now making the bed, doing the dishes, resting and showing alone. I have to leave the bathroom door open as the humid air from the hot water makes my heart rate go sky high. It will be an accomplishment when I close the door during the shower. Do others experience this? Yes, I am finding that everyone heals at their own pace. This is a whole new journey on a new road. linda

I do not get on the journal much, so my entries will be scarce. For the last 4 days I have felt much better and have been able to make the bed 2 days in a row. I feel that is great progress (turtle steps)!! Large turtle steps!! The arm movement raises the heart rate quickly. Taking a shower has improved as well, as movement needed to be slow and deliberate and I have to leave the bathroom door open as the humidity of the hot water causes the heart rate to increase quickly as well. I have learned so much about what does affect the heart rate that we take for granted.
The doctor told me that I am on a fine line, in a difficult position as I have to watch the heart rate and yet get more active. How is this done? I think I am finding the line which is such a good feeling but such a different lifestyle. At least it is a lifestyle and there is improvement!! I feel stronger. Even though it is turtle speed, improvement is improvement. I am not allowed to travel yet, even 50 miles away, where the altitude is higher. I am using oxygen at night which has helped as well. I don't know when I will be able to do rehab. I will have an echo in the next month or two which will let us know for sure about the heart improvement. I surely do not want to use experiment meds, I do not want the pump nor the transplant so am praying for heart strength and health. I feel this way now but if I have to make that choice it might be different. Blessings to all. linda

I have not been on the journal for awhile. I have noticed that I feel better overall than I have felt since surgery. This much mean my EF is improving as I have a little more energy, I am a little more active. My sternum is sore on both sides, I think that could be from sleeping on my right side. I can't sleep on the left side as that is the side my ICD is implanted and it is still tender, after 2 months. I am taking a nap most days and then get going again. I am not doing rehab yet, the Dr. wants my heart to get stronger. I sure am not used to "sitting around". I thought if I ever could have the time to "do as I please", I would get a lot accomplished. that is just not so...I do have the time now, I can choose what I do and I am not getting a lot accomplished. That is due to "recovering". Yes, I want to recover and am pleased with my progress it is just too slow. I truly am grateful that I am recovering. I feel like I am finally on the recovery road. Thank you all for your support and your supporting words. I feel like I am beginning to get a new lifestyle created, it is still difficult to "slow down". I feel that I can't talk much about what I am feeling as I am sure people are tired of it, not as much as me but still tired of talking about it. Family is supportive although they get tired of the stuff too. No one has said anything it is just my opinion. I am going to sweep the kitchen as much as I can so that will be one of my first house cleaning attempts. I walk about 50 feet now without having a shortness of breath most days so I do this walk several times per day. Blessings and good recovery to all.

July I was in the hospital 4 different times with one time being a 9 day stay. I was in the hospital due to either dehydration, fluid on the lungs or rapid heart rate. I had my mitral valve replaced in Alb. on April 15. I was in the hospital for 9 days there. The last time I was in the hospital was due to just not feeling well so it was only an over night. I have read what others have said about their surgery and how they are recovering quickly and feel really good. Well, that truly has not been my experience and I was feeling like something was wrong with me since that was not my experience. It turns out that my heart has been weak and the surgery weakened it even more, the issues I had kept weakening the heart. I have to say that prior surgery I felt good, had energy and kept busy. Since surgery it has been nothing but hell! So now 4 months of hell almost. Last week I finally felt better, my stamina is improving, my concentration is increasing and my energy is increasing. I have had many medication changes and now I think we have finally found the right combination. In the 9 day hospital stay an ICD-pacemaker was installed due to my A-fib, which was NO fun.
I have been diligent in watching the sodium and fluid intake, weight, energy level, coughing, blood pressure, oxygen level and I am tired of it but need to do it to strengthen my heart. I am determined to heal the weakened heart. If this medication does not work, we will try a new medication, if that does not work the next option is to have a pump inserted into the heart to do the pumping for the heart and if that does not work well
it will turn into a heart transplant. I do not want to have to do any of these, I just want my heart to become strong and be healthy. The mitral valve is working great and the ICD-pace maker is working great. Along with the need for the mitral valve being replaced, I was diagnosed with congestive heart failure, which I have no history of and have not had any kind of problems prior to Feb. 2015. My heart was weak (which I didn't know and neither did my Dr.) In November I fell 3 steps and landed face first, I have no memory of falling but I do remember finding myself face down and in pain in my legs. My husband supported me while I got myself up (as he didn't want to make anything worse), we went to the ER and discovered I broke my little toe on the right foot and pulled all the muscles of the left leg. They said nothing about my heart. I used a walker and crutches for several days and rested my leg. I began to have congestive heart failure symptoms in Feb. so I went to the Dr. and that is when the heart murmur was discovered and then things went quickly to do all the testing and such to find out exactly what was going on. The SHOCK was that I have congestive heart failure and had to have the mitral valve replaced. The thought for me was ok lets do this and I will feel so much better, well, since surgery as I have said earlier it has been nothing but hell and I have to recreate my life. There are many things that I can not do anymore, plus all the monitoring which is a full time job!! I can not do exercise yet, but I do keep busy and do walk to keep some physical activity, however it is slow and short at this time. I do notice improvement which is encouraging! I feel fortunate as I have felt, it is just too hard and I don't have the energy but my family has been a wonderful support which has helped a great deal. This journal has been good however it seems that others are walking 2 miles in 4 months post surgery. This made me feel like I was not making progress. I am glad they are moving forward but would like to know that some things are difficult for them as now I am sure there are some things that are difficult. Guess I was not reading between the lines, just taking what they said at face value. I am not doing that any more. I have been grieving my past life and working slowly on creating my new normal and seeing things differently. . I hope it is helpful to someone to read about the difficulties that I have had.

I have not put anything on the journal as there was so much going on. I was in the hospital for a couple of days about 2 weeks ago, not sure why, they said I was dehydrated but I doubt that. I just did not feel good. Now I am on oxygen at night only, The last few days I have felt much better but by noon I am exhausted. I am pushing myself to do more and to walk more and I think it is making a difference. Went to the Dr. today and he said things are looking good and to keep doing what I am doing, so that is good news. I asked if I could go to Durango now for a few hours (which is only 45 miles away) and he said :no, you are doing so well we don't want to rock the boat". It has now been 3.5 months since the surgery. I can say I have not been bored since the surgery except for one night after surgery. I am learning to recognize when I am getting tired instead of finding myself out of energy. I do get pretty frustrated in moving slower. I did not realize that I "whipped" through the things I did. I am monitoring everything pretty good which is a full time job for sure. My cough has decreased a great deal (YEAH), my energy has increased, still short time but increased, my appetite is not as it was but it is better than it was after surgery, I sleep with one pillow and all night, my oxygen goes down when I relax and don't breathe deeply. I now have more positive thoughts towards recovery. I am changing my private practice which makes me very sad so there is grief to deal with in several ways, the loss of my previous life, the loss of part of my private practice, although the changes might just open up doors to something just as awesome. I think of the people that have been such a support (and let me know they support me) often and appreciate all they have given me. I am grateful for much and ready to move forward. I know things could be worse although it felt worse. I felt good prior to surgery and since surgery it has been 3.5 months of hell so I didn't see the benefit of the surgery. I still don't feel the benefit but I know it have benefited and appreciate the medical profession and my medical team. I am grateful help was available and I can move forward.

I got released from the hospital yesterday afternoon. I did feel good but when I got home I was exhausted so I napped for several hours. I have been resting all day today as well. Had difficulty keeping my oxygen up, did some deep breathing which helped. Did an informal sleep study last night, don't know the results yet. An ICD defibrillator was implanted on June 18. So far so good. Went into Afib on the morning of the 18th, hrt rate was 220 for 6 min. (Not a comfortable situation) I don't want to experience that again. I am not sure I want a battery installed in my heart either. I felt good prior to surgery and since surgery I have had 3 months of hell! I am really ready for things to turn around. Thank you everyone for your kind words and support and prayers!! They are all appreciated. The heart is weak so can't push myself much but need to some. Am doing well in controlling the salt and the fluid intake. My wt. is maintained as well, but the oxygen and the heart need more attention I think, and I told the Dr. and he listened.

Last night I felt sick, blood pressure way down as well as heart rate.. we got to the Er and they took blood about 5 vials..no problem with that.. then after seeveral hours they decided the taprobnin(.?..?.) was a bit high so admitted to hospital.. meds changed again and one stopped. My cough has decreased a great deal, the sick feeling went away as they gave me kefron!! Now hoprfully my labs will comr back hunky dorey and I will feel good so I can go home.. if changing the meds does not work then I will be given the option of having a battery placed in the heart.. I am praying for the meds to do their job so no surgery.. appreciate all prayers and positive thoughts!!

I have not been on the journal due to not feeling like it. I feel a bit better so will share what I have been experiencing. I called and asked questions and had the right lung drained of 6 cups of fluid. I did feel much better then in 1/12 weeks I called again to ask questions and was admitted to the hospital for 4 days for fluid on the lungs. No draining this time just diuretics. About 2 weeks later I went to the ER as I had not felt good for several days. I was dehydrated due to diuretics, had some fluid on the lungs again, heart rate was rapid and my kidneys were being affected by one of the meds. I was admitted to the hospital and was in for 9 days. During this time I was treated for rapid heart rate and was watched for dehydration again. On the morning of the day I was to discharged I went into A-fib, 221 hrt rate for 6 min. They administered some mediation which helped a great deal so am still on that med. 2 days after the A-fib I was told that an ICD-pacemaker was recommended so it was implanted that evening. I went home 3 days later. I have had some good days but the heart rate is still high I believe especially in the evening. I have had some bad days lately. This week has been hard and I have been in touch with the Drs. office daily as they are working with finding the right combination of meds. In the meantime I am sitting a lot, this not doing anything is not who I have been so now I working re-creating myself. I have good family support which helps. I know others have had it worse and I am not complaining just sharing.

I have not been on the journal to update due to not feeling well. I have been having more down days than up day. Fri. and Sat. I was miserable, so I went to the ER and was admitted to the hospital. turns out there is inflammation of the paricardium....it is called post parcardiual something. I am still in the hospital and will be for 3-7 more days. I am looking at a long healing process.

I have so many questions. There are days I feel good, then all of a sudden there is a bad day, I can't do anything, I don't feel good, not nauseous, don't care to eat and can't concentrate and feel very tired. If I do walk from one location to another the hrt rate increases more than it should, I think. The hrt rate will go from 110 resting to 37 to 54 to 88 to 112 and I have not done a thing. My chest aches, it is around the sternum, I have not had this for awhile. Is all of this normal? I did see the hrt nurse yesterday and I asked her and she has to talk with the dr. and he is in the cath lab all day Friday and she has Fridays' off. So I will call her on Mon. and/or expect her to call me on Mon. This bad day stuff is a real down time as I can't do anything except sit and lay. I am just wondering if others are/have experienced this as well.

I do feel better than I have for weeks. The positives that I am aware of are: My fingernails are growing nicely, which they have not for years!! I am not coughing with any laugh, exertion, talking.....so there is improvement that I notice from the surgery!!! I still tire easily which is to be expected. Does anyone know if the EF improves over time? Prior to surgery mine was 40-45% and now it is 20-25%. My resting heart rate is 95 and I would like it to be well under 90, has anyone had this issue? My incision looks nice and I don't want it to tighten or be red is Vit. E a good thing to use after this far out from surgery? I am monitoring my fluid intake and am well under the 1500 ml allowed per 24 hours and have eliminated salt as much as one can. This is a good challenge!! I did not walk this morning but have been doing some household tasks with rest between each one. My weight has hit a plateau for the past 4 days now, hoping to lose 14 more lbs. !!! Ice has become my friend as I can have half as much ice over water!! I am waiting for the "I feel so much better than before surgery" time to hit me!! Anytime is fine with me!!! I am ready!!!

Today I walked for 20 min., rested then showered and got ready for the day and rested some more. Then I got to go on a field trip with my husband to Sam's and we walked some more. That wore me out, when we got home I sat on the patio and slept while it sprinkled. I think I might be beginning to get used to this resting that I fought so hard to avoid!! I am now sleeping in my bed and am comfortable. I have been able to do some drawer and closet cleaning and then the resting!! I am still having some difficulty with concentration, I think it is related to being tired and tire easily so resting more than I want but am enjoying it too!! Still some frustration in not being able to do things as quickly as I would like. I am making progress in lots of ways though, I am eating more and have some interest in food, have been checking out smoothies, am walking more and daily, have been doing some tasks around the house, can dress and shower alone now and can maneuver the steps alone, not coughing and have some nice fingernails. Lots to be thankful for!! No pain!! My resting heart rate is 95-99 now. I am taking a beta blocker twice a day which did help bring the rate to this. With exertion the heart rate can easily go to 125 so have to rest for it to slow down.

Well, I will walk one time per day for 20-25 min. according to my pt. That does feel good to me as well. Today was a relaxing day, I did a 25 min. walk, napped in the sun for 90 min., went to the lab and to visit my mom. Came home and napped some more in the sun (shade). I am still trying to figure out how to pace myself with my activities. Will begin cardiac rehab soon, don't know if I am looking forward to that or not.

Today I walked for 18 min. already and that was not too bad. Will do it again this afternoon. I am finding it difficult to know when to stop other than when I am totally out of breath. Where is the line to over doing? That is one I will be paying attention to and I am assuming it will be flexible!! Which makes it more difficult! I sat out in the sun yesterday afternoon which was wonderful. I am going to do that again today! I go for lab work today, I wish my heart rate would go down and stay down, but guess I have to trust the medication is doing what it needs to do. Shape here I come!!!

I have got some catchen up to do to be able to walk more than 10 min. so I am going to get after it now! I do feel good and do tire easily so rest between activities. Sometimes it is hard to guage when to stop. More walking coming up!! and of course more of the spirometer! I need to get myself in shape!!