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.

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.