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New . Scared and needing support and advice.
Yesterday I was told I was approved for the Transplant list. Although I have know for 3 years this was coming it hit me very hard. I am a very emotional person and the only way I have made it through the last few years is by not thinking about this aspect of my future too much. Therefore each step closer has been like a slap in the face.
I'm going to apoligize for the amount of details I am going to share but I am a person who figures you need as much information about something as you can get in order to respond to someone.
This is my story. At 54 I was diagnosed with heart failure. At first I just thought I had Broncitus. After 3 weeks and several different meds I could hardly breathe. I took myself to the walk-in clinic and they said I needed to get to the hospital. Next thing I knew a Doctor is telling me I have Heart Failure and the reason I couldn't breathe was because of fluid around my Lungs. Big shock, at the worst I figured I might have pneumoina. They drained a 2 liter bottle of fluid from just one side. I spent the next week in the hospital. All of a sudden I had seriously LOW blood pressure (like 70/52). Although it had been normal at my last check-up. They were suprised I wasn't passing out. BP is still low but not as bad.
Went home wearing a difibulator vest (very uncomfortable). The next 3 months included lots of tests to figure out why my heart was having problems. End result was that my heart had gotten hard due to a virus. I had never heard anything like this. EF is about 22.
Had a pacemaker /diffibulator put in and got rid of the vest. YEAH. I live in a rather romote area. My cardioligest here has to send me to a Doctor 250 miles away in order to plan for a transplant which they all decide is going to be nessecary at some point.
Fast forward 3 years and that some point is now. I would really like to be able to talk to others who have gone through this to see how they handled everything. Emotionally, financially and physically.
RIP12, March 21, 2020 3:08pm EST
I am a 10 year heart recipient and also live in a rural area, my transplant doctors are 150 miles away. since I dont know your financial situation or where you are placed on the transplant list I will try to help the best I can.
I was told I would need a transplant in 2008 but I had to wait until my disabillity was approved before I could be reviewed for transplant. In Feb. 2009 I was approved and I was put on the transplant list at 1 but the doctors told me that I only had a 50% chance of surviving 2 weeks unless I had an LVAD. After 6 weeks of recovery and training I got to go home.
The next 15 months was full of ups and downs, the worst was living about 3 hours from the hospital and knowing I only had 4 hours to be there after I received the call. During that time I tried to stay as physically active as I could to increase my ability to recover. The hardest part was keeping my from over thinking everything.
May 2010 I received my transplant and was released 14 days later. Although I went through stage 2 rejection twice I still felt better than I had for a long time.
Emotionally I had a lot of ups and downs and yes even went to therapy for a little while. Financially, with the help of my financial councler through the transplant department I made it through and I still use them for my after care. Physcally, stay as strong as your heart will let you withot pushing it to hard, after your transplant take it slow but before you know it life will be better.
AHAASAKatie, March 22, 2020 8:47am EST
Good morning, thank you so much for letting us know what is happening in your life. I can share a few resources for the financial side of things.
Patient Advocate Foundation (PAF) http://www.patientadvocate.org/ . The PAF is a national non-profit organization that serves as an active liaison between the patient and their insurer, employer and/or creditors to resolve insurance, job retention and/or debt crisis matters relative to their diagnosis through case managers, doctors, and attorneys. The Patient Advocate Foundation seeks to safeguard patients through effective mediation assuring access to care, maintenance of employment and preservation of their financial stability.
Another option is to contact PAN- the Patient Advocacy Network https://www.panfoundation.org for assistance, and
United Way’s 211 is a good option as well http://www.211.org/ as they have local resources that might help, even in a rural setting.
Please know that you are not alone, we are here with you to support, encourage and listen.
JamesPL, March 22, 2020 9:15am EST
I'd like to echo much of what RIP12 has said. Any exercise you can tolerate and are allowed to do will help you in the long run. I was told by doctors before my CABG that my recovery would go well because I had kept myself in shape. After your transplant, I would recommend cardiac rehab if you can given your location. If not, consult with your doctors about what you can do on your own. It will help your recovery. I read an article about a heart transplant patient who was fairly active and returned to doing much of what he enjoyed after his transplant including kayacking.
I also agree that any kind of emotional support will help you with your recovery. I talked with two therapists and they helped to boost my confidence in achieving goals. This doesn't have to be in person. Both my therapists were engaged through online connections.
Wishing you all the best!
AmbassadorC, March 22, 2020 4:12pm EST
Good evening Faith6-
Welcome to the support network, as you are among a community of heart warriors that are each other’s strength for the journey ahead. My fellow warriors and Katie have given you some great resources as well as encouragement. While my journey involved a repair to my mitral valve, via open heart surgery, my recovery presented many challenges post operatively, physically as well as emotionally. That said, I can relate to your emotional concerns of your road ahead. I’m going to share with you some words that I recently sent to my godfather dealing w cancer treatments. I’m hopeful this will inspire you as well.
“Sending you some words of encouragement as our physical recoveries have similar emotions tied with them. I may not know what physical pain you are going through as we are different in that regard, but I can relate to the emotional and mental side of recovery. For me, it was taking one day and one ailment at a time. If I looked too far ahead to what could be or how I would be in 3 months, 6 months, or even a year... I started to get too anxious and just wanted to be through with the present, similar to your feelings. Instead, with a little encouraging words from a woman that knew me best since I was brought to this earth, she advised me that patience is indeed a virtue. I never prayed so hard for acceptance and understanding of this, but somehow I got through it. I’m praying for you as well to accept this virtue - and encourage you to do the same... Don’t give up ... keep on fighting as every day is a new day!”
I also agree with my peers suggestion to join a cardiac rehab if possible. Being around like minded patients truly helps in so many ways. In addition, the nurses provide a safety blanket of sorts while you are exercising in a safe environment while being connected. I’m hopeful this has provided some insight and encouragement. Stay strong and keep on fighting with heart, one beat at a time.
jcowin, March 23, 2020 1:33pm EST
I can relate to you on so many levels. I was born with a congenital heart defect and needed a heart transplant at 16. I am 20 years post transplant!
With that said, knowing that that day is coming, versus it actually being here, has so many feelings. I found myself going through the 7 stages of grief - SHOCK & DENIAL- PAIN & GUILT- ANGER & BARGAINING - "DEPRESSION", REFLECTION, LONELINESS- THE UPWARD TURN- RECONSTRUCTION & WORKING THROUGH- ACCEPTANCE & HOPE. I didn't know that a transplant for me was an option. I never had that conversation with my cardiologist until he sat me down for what I thought was a list of things to keep up with, after I went home. Instead, it was a conversation of me sitting in his office, crying and telling him and my mom that I did not want the transplant. The shock set it and it took a while for me to work through that. Every step of the way, with any diagnosis or significant change in your medical life, this cycle finds its way in. My mom and sister were my rocks. A good support system helps! Do what you need to do to get those feelings out. It is ok to cry and be angry for as long as you need. Listen to your body and what it needs. Know that a transplant will only make you feel better. I am not saying it doesn't come with its own set of challenges, but when you feel good again, you can take those on. I never knew a life without a heart condition nor how it felt not to be out of breath with pressure in my chest. If you can, remember how you felt when you were healthy. That is what you will feel after the transplant.
Now reading your story, also brings up a whole new set of emotions for me. My mom was diagnosed, at 66, with congestive heart failure over two years ago. The doctor initially told her is was pneumonia. When she came home with her vest, it terrified me. Every move she made I asked her if she was ok. She had a pacemaker/defibrillator put in like you. Again, I found myself going through those stages of grief, but now my mom was the patient. I didn't know how to be the caregiver, I only knew how to be the patient. As the patient, I did what I had to do to get through surgeries and the transplant (ten years after my heart transplant, I needed a kidney which I got from my sister). The people I did it for, as I tried to rationalize that thought, were my mom and sister. I watch my mom go through exactly what you are going through and knowing that at some point, a transplant will be needed. I feel helpless, sad, and defeated in some moments. My mom is the strongest person I know. She does what the doctors say, but she tries to find humor in everything. We spend a lot of time laughing, even when we are talking about the seriousness of her diagnosis.
I can't speak to living in a remote area, but it does present far more challenges when you need care and you are far. It takes energy that you should be able to conserve just to get there. Financially, my insurance needed to approve everything. We did an online fundraiser to help pay the costs that were not covered.
If you can, try and find things that makes you laugh. Take it one step at a time. The hardest part is the waiting and as patients/caregivers, we do that more than anything. When I was sick, and had the energy, I did needlepoint or played games. Sometimes the littlest distractions can help you refocus on what you need to do.
I hope this helps a little as you continue this journey. The good news is that you are on the transplant list and there is so much good to look forward to!
Apward, March 26, 2020 11:13am EST
The thought of getting a heart transplant can be very nerve-racking and scary. I was diagnosed with a heart condition at age 7 and had an internal defibrillator for 11 years. Also disclosure, I truly value your honesty and detail of your story. I believe the more honest we are about our experiences, the better others can understand. I received my transplant at age 18 and I am now 26. I went through similar issues where I had a lot of fluid in my heart cavity, due to my heart being so enlarged. It is a scary and painful process and I hope you know that you are not alone.
I went through a lot of emotional turmoil throughout my transplant. I was very weak when I first came to, after the surgery. I could not move my body, I was hallucinating from all the drugs, and things as simple as coughing was painful. I was lucky enough to have wonderful parents who were military and could financially support me. However, day by day I was encouraged by my friends and family to keep going. I made small steps such as sitting up, practicing breathing to strengthen my lungs and doing small exercises to increase my strength daily. It was not easy in the slightest, but determination and support are what got me through.
All I can say is the journey battling heart disease is tough, but it is a battle worth fighting for. I am 5 years post-transplant and the happiest and healthiest I've been. It took a long time to get here, but the pain and recovery were worth it. Sometimes when we endure the things you and I have been through, we can have such a better and different appreciation for life. We can develop compassion for others by supporting each other during these times. You got this and I know you can be resilient!
RickinStlv, August 26, 2020 7:02pm EST
Good evening. My name is Rick. I am a 2-time heart attack suvivor. In 2005 I had a pacemaker/defib placement. I have been shocked 17 times since 2005. I haven't been shocked in 1.5 years now thank God! Back in early May of this year my doctors came to the decision that I was to be placed on the transplant list. U have had a few donor heart offwrs but these offers had to be turned down by my transplant team for several different reasons. So now it had become a waiting game. I know eventually a acceptable match will come my way.
I wish you nothing but the very best of luck. Do not give up as giving up is not an option.
Feel free to messege me at any time you wish.