Mar 20
maggiet , Posted on SUPPORT NETWORK Blog

Trying to figure out what is in store for my dad

My dad had 2 strokes in his 40's. He regained fuction, but developed serious heart disease. He is in heart failure. I think it is because he has had type 1 diabetes since he was young. When he finlly got around to seeing a cardiologist stents and bypasses were no longer an option.  He has survived for about 20 years since the heart disease was diagnosed, which seem miraculous. He has had many hospitalizations and many health crisis'. After his last trip to the hospital, the doctors informed us that he was no longer responding to treatment and that there are no more otions for improving his condition and they referred us to palliative care. 

Last month, my dad chose to have a DNR put in his chart, but at the same time was talking about making it to my nephews college graduation- he'sonly in 7th grade.  Last week he had a follow up with his promary care doc because he wanted to have more ecp treatments. His doctor told him he was no longer a candidate for the treatments as he thought there was no chance for any new revascularization. He told my dad it was time to get his affairs in order. Since then, my dad has not talked about the future and seems very depressed.  

I admit, he does not have a good quality of life. He sits in his chair all day. He gets short of breath even having a conversation, let alone walking even a short distance. I feel very frustrated because no one, including his doctors will tell me what to expect.I feel like I need to know it there is a certain amount of time I can expect to have my dad around for. Will this go on for several more years? Will it be months? What should we expect in this time period? 
  • Lace
    Ask God have faith
    Usually I am the guy saying it's not as bad as it sounds and it could be worse, but I always do so based on the truth and facts. The truth is it sounds like your dad is in the final stage of heart failure. I am a big proponent of biventricular pacing, but I am not sure this would be an option for him. Did the doctor say anything about an lvad or transplant? I would ask why those are not options. As to the depression I believe there is a link between depression and heart problems. I think the physical effects of heart disease actually contribute to the mental condition on depression.
  • steedo
    Just simply love him and spend time with him. encourage friends and family to do the same. They [medical fraternity] can't tell you because they don't know. No one can put a time scale like 'it will be the end of December or the 18th May'. Life has a cycle and we all go through it. Be positive, look on that side. You have time to prepare for the end you just cant define exactly when that will be. I believe that you and he will get far more out of spending time talking together than expending that precious time praying. Sounds like he is a tough customer and defied the ods already? Reminisce the good times and focus on the present rather than the inevitable that is coming.
  • AHAASAKatie
    I am so glad that you are here, sharing with us what is happening to your dad and your family. We are here to support you both through this time. I am sharing a link to our Advance Heart Failure patient education information. These pages are designed to help your family with information about possible treatments, questions for his medical team and then pre-planning and palliative care when/if that becomes necessary. As the months progress, we want to be here for you, as a safe space to share what happens as you see fit. Prayers for all of you, Katie
  • ActiveLarry
    I was told my blockages were like I was a hundred years old. but i survived thrived. please write me at cardiac recovery at gmail dot com.
  • ModeratorCate
    I, like many Cardiac Patients, am a fighter. From what you describe in terms of your Dad's history I am estimating (but could be wrong) that he is in his 60's. Many of us have been told there was nothing else to be done. I was given an "expiration date" of three months. That was four years ago. My first thought is to suggest that your father get a second opinion. IF you live near a University Hospital the Cardiologists who teach at the Medical School also have practices within the hospital compounds. I have found them to be the best resource for a case like your Dads. They are familiar with and have access to all of the latest in treating CHF; including experimental devices like the one they implanted in my heart which has taken me from 11% pumping function (barely alive) to 66% (considered normal.) At the time of my diagnosis my BNP's (a blood test indicative of CHF and it's seriousness) were over 5000 on a scale where 100 indicates serious CHF. I was Stage IV and there was little hope. My husband was told to "Take her home. Make her comfortable. Get her affairs in order." I was 54 years old, had no blockages, no history of cardiac illness and had gottten a gold star on a cardiac workup I'd had done (because of family history) just 3 months prior. A Second opinion (I asked my PCP "If I was your wife/mother/sister who would you have me see?" brought a new Cardiologist and, as serious as things were, a whole new outlook on the possiblity of a future. He had me transferred to University Hospital under the care of both himself and a Cardiac-Electrophysiologist who had been his teacher and mentor throughout Medical School and their post graduate training. At the time of my transfer I had spent most of the previous 6 months in the hospital and was not responding to any treatment. The situation was so dire that, except when I was in ICU I had to wear an external defibrillator to respond as needed. It was at the University Hospital, with the addition of their faculty staff to my medical team, that things began to change for the better. Since I was not eligible for Transplant the Electrophysiologist (EP) implanted an experimental complex cardiac device (Futuristic version of Bi-ventricular pacemaker/ICD combination devices. There were no promises except that the EP thought this device might give me a chance at some better quality life during the time I had left. The device took over completely for my hearts electrical system (which it turned out had been damaged by exposure to the children's illness Coxsackie-B--commonly referred to as Hand, Foot and mouth disease) before I was even in the Recovery Room. The next morning I got up ans went into the BR unassisted. It was not until I heard my husband looking for me and the Nurse panicing that I realized the significance of this small action. IT was the first time since my initial hospitalization that I had gotten out of bed and walked, even a few steps unassisted since my initial hospitalization 6 months earlier. Two days later I dressed myself and (with special dispensation and an escort by my Primary Cardiologist pushing a wheelchair "just in case," I walked down the hall, took the elevator, walked to the lobby and out of the door under my own power. Within three weeks my BNP was under 50 (indicative of no active CHF) where it has remained ever since. Within months my hearts pumping function was up to around 40%. Each year it has risen with the latest testing showing it to be 66% NORMAL. While I doubt I will ever run a marathon, I have a quality of life which improves by the day. I share this story to show you how much things can change and improve in the life of a CHF patient; even one in the end stage who is not responding to any treatment. Without that Second Opinion I would never have wound up at the University Medical Center under the care of not only my amazing Primary Cardiologist (who never gave up on me and showed a commitment to me (and it turns out all of his patients) we don't often see these days along with the Brains of various sub-specialty Cardiologists who are tops in their field and have access to many things a local Cardiologist does not. Here is a link from the AHA/ASA regarding seeking a Second Opinion. You, and your father have nothing to lose and everything to gain from the process. You are in a tough spot. I was my mother's primary caregiver during a 40 year battle with heart disease, blockages, stents, TIA's and eventually a Major Stroke after a knee replacement Surgery she insisted in having so... "If you wind up needing a transplant I want to be able to get along well enough to come down there (we had moved to the Tampa Bay area of Florida from NJ) and help Gary with getting you back into the world of the living. a So I've been on both sides of the bed. Even with all I went through in the first couple years of my illness and stabilization (including 2 bouts of Total Kidney Failure, many bouts with "Critical Dehydration(my body did not take well to diuretics) and an episode of Sudden Cardiac Arrest which necessitated five resuscitations before I was stable enough for ICU and 20 days in ICU before I was stable enough for an ablation to address the arryhythmias which had cased the initial cardiac arrest, several TIA's and a Mild Stroke" I feel strongly that you, the family, the caregiver's have the toughest seat in the hospital room. The fear of what may happen; the hours of watching a loved one undergo procedures some of which (especially the infusion of gallons of IV potassium) seem more like torture than treatment; the hours spent convincing the stubborn patient (seems we cardiac patients all share an inate stubborn streak....All of this can become such a burden that the caregiver winds up becoming a patient themselves. As I often say at least, as the patient, I am offered, and usually given "magic drugs" which take away some of the sting of the procedures and treatments. In the end the decision as to whether or not to seek a Second opinion is your Dads. But, with the information contained in the AHA/ASA web page on Second Opinions you can speak to him about it armed with information. I will end this by sharing a post I wrote about the impact of the last four years on my husband. Which was originally posted as a Blog entry on the AHA/ASA website and has since been shared on websites around the world. I wish you and your father the best as your continue this journey with CHF. Please know that you are never alone. We are here for you and your father to help you find whatever resources you may need. We all know someone who has had a Stroke. For many it’s a friend. For some a relative. Maybe a spouse? A partner? A Parent? Maybe even a child. Stroke is one of those illnesses everyone (rightly so) fears. Maybe it’s because many times Stroke seems to come out of nowhere. It strikes a person down without warning. And, once it makes an appearance, Stroke shows no mercy. It leaves much in its ruin. It transforms people. Destroys families. Changes lives forever. And that’s in the best case scenario. Though more is known about Stroke than in the past. It still holds many secrets. One thing we know for sure; Stroke loves to takes prisoners. When Stroke comes for a member of a family; everyone, especially the spouse, partner, (aka caregiver)-- is thrown into turmoil. If you think my message is that life will "eventually" get back to . the way things were “before the Stroke,” Sorry But with Stroke that’s the simple truth. Things will never be the same again. I had a mild Stroke. My recovery was swift and (comparatively speaking) quite successful. Yet I still suffer from some leftover troubles (aka residual symptoms) – fear of another Stroke, random bouts of depression, loss of self-confidence, increased anxiety, a total inability to multitask--even trying to talk while doing something else is a useless endeavor, short term memory problems, and emotional swings sometimes so overwhelming I worry they may "take me over the edge." And I am viewed as a “Successful Recovery.” I had my Stroke quite a while ago. When was yours? For me, like many Stroke patients, it was weeks, maybe even a couple of months before the haze cleared enough that I could see the effects the Stroke had on my life. Fortunately, or unfortunately, my husband saw them immediately. That morning Gary rushed me to the hospital from the Opthamologist’s office, where we had gone when I woke up with a strange, awful pain inside my eye. While my eye was fine, However, the news was not good at all. The Doctor shocked us when he said I was having a STROKE, By the time we reached the Emergency Room (about half-a-mile from the doctor’s office), I had the telltale facial droop, my right hand could not grasp anything and I was dragging my right leg behind me. My husband spent hours-- days, anxiously pacing the hospital. Looking for all the information he could find about stroke. Quizzing doctors and nurses about my treatment. Watching my therapy sessions as I, figuratively and literally, got back on my feet. Checking for signs that things were getting better or getting worse. Talking to the doctors, the nurses, the therapists and the caregivers of other patients about my progress… About “What to expect.” He encouraged me. He held my hand. He promised me that I would be "fine." He repeatedly gave me the Hope I needed; telling me that everything would soon be "back to normal." All the time fearing, knowing, it wouldn't. Preparing himself for the worst. Then, as suddenly as the Stroke had taken over our lives; I was declared stable. It was time to go home. Once home, we were each at some point, struck by the realization that things would never be quite "the same" again. This was a major upheaval in our lives physically, mentally. At the very core of our souls. We both knew that even if I had a full recovery - "Everything had changed. Gary had faced his worst fear- that I was going to die. He stood nearby while doctors examined, assessed, then treated me. He sat nearby while therapists worked with me. And then he took me home. That is significant. It changed us. Both as individuals, and within our relationship. Eventually a "New Normal" comes for each of us recovering from the aftermath of Stroke. It comes as a new way of looking at situations, accepting limitations you may have, and working to get through them or go around them. But while everyone is working with us to make these transitions, our partners are sometimes left to fend for themselves. The attention of the doctors, the nurses, and the various therapists; both in the hospital and then at home was on me. Not on my husband. No one asked him how he felt "about the Stroke." No one held his hand for comfort. No one examined him. Explored,"What hurts?” Questioned him about his concerns? No one checked his vitals. No one cautioned him to watch his level of stress. No one brought his meals, or checked to make sure he was getting the proper sleep. No one suggested he schedule breaks, or rest when he got tired. He heaved a sigh of anxiety and relief, and took me home. He got me settled, found someone to stay with you; and headed to work, or to pick up groceries. or to complete one of the hundreds of chores necessary to keep the house going. All the time panicking each time his phone rang. Wondering if he would return home to find his worst fear come true. The bottom line is, with the "New Normal" I recognized my life had changed. I was struggling. I was learning to adjust. I was mastering ways to adapt. So was my husband. But in his case no one noticed. Caregivers spend a significant amount of their energy and attention focusing on the needs of others. An unintended consequence of this is that they risk losing sight of their own needs. Leaving them feeling broken and depleted. How can we work together, patients and caregivers, so we will be able to recognize when a caregiver has stopped paying attention to their own needs? How can we work together so we will be able to recognize the signs in each other that we are becoming lost. I'm not sure of the answer to that one. But I do know that if we can focus some attention back onto each other, our feelings, our needs. If we can reconnect, even a little bit to the people, places, and activities that support health, restore energy, and bring some happiness back into view; It can be Invigorating. It can bring some joy back into our day. It can fortify us as we travel the long road home.
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