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Covid-19, Immune Compromised, and Coping
I know this is an extremely stressful time for many families and their loved ones. My hours at work were recently reduced, due to being a heart transplant patient and being immune-compromised. I just wanted to reach out on the support network to see if anyone had gone through a similar experience? I also wanted to ask the support network what things everyone is doing to cope and stay positive? I enjoy cooking and face-timing my friends. However, I would love to provide support to one another and see what fun activities you're doing to pass the time in quarantine. Hope all are well!
AHAASAKatie, April 8, 2020 9:51am EST
Thank you so much for coming to us and sharing what is happening in your world. Please know that we are here for you. I have a few resources I can share with you:
Move More Together (100% dependant on your physical ability and what your doctors have said you can do)
Please know that we are here for you during this time. AND I encourage you to cruise through all of the other forums and share & support the survivors and caregivers as well.
We are all in this together, regardless of health condition or caregiving situation.
survivor09, April 8, 2020 10:22am EST
Thanks for reaching out and sharing your experience with dealing with the COVID virus. I'm so sorry to hear that you have had to reduce your hours. I hope when you do go to work you are wearing the necessary mask and taking all other precautions.
You are not alone in the struggle to find fulfillment during this scary time. Due to my heart and my back, I've been a gig-worker, as they call us now. I drive for UBER and Lyft, substitute teach and I walk a lot of dogs on a regular basis. ALL of this is closed down - to me because I'm immune compromised.
I left my home state and came to my son's house to stay with him during this time. Family support has been invaluable! I am helping him work on his new home. I've painted his living room and knocked out a wall between the kitchen and dining room. I've been exploring all the walking trails in this area with my grand pup. I ordered a beginning jewelry kit because I enjoy making jewelry and so am going to try and take it to the next level. I've also been reading more than usual. The most helpful to me has been knowing that my family has my back through this and I have theirs. The only thing I can't do is play my music because my piano is at home.
I try to be easy on myself because this is beyond my control. So, if there are some hours in the day that I turn on a Netflix movie or watch a couple of streaming episodes it's really okay. It's an adjustment and we WILL get through this.
Keep in touch with us and with your family and friends. That is the most important!!
If you come up with any new ideas to abate boredom or make us feel productive, please share!
I wish you all the best!
Rmp829, April 8, 2020 11:07am EST
Yes this sure is a trying time especially for those of us with heart conditions. My mom has end stage heart failure but she has an lvad (9years) and is doing great! My daughter had a heart transplant and I was diagnosed with heart failure a year ago with an ef of 20% now I'm at 40%! As far as coping with the pandemic we are just trying to stay home except for doc appts and grocery store runs. Taking walks and catching up on movies and series with a little house cleaning in between and unfortunately a lot of eating 😃
I'm actually struggling with sticking to m low sodium diet I did extremely well for about 6 months right after I was diagnosed but I slipped off after I had back surgery and was hospitalized for 2 months
Anyway, I hope you get some good ideas and encouragement here. We are all in this together. Hang in there. This too shall pass
AmbassadorMR, April 8, 2020 1:23pm EST
First off, my sincerest congratulations on your progress and new life as a heart transplant patient. I have had the opportunity to interact with other HT patients in the volunteer work that I do with a local cardiac rehab unit. Being a heart valve replacement patient myself, I can only imagine the extra hurdles that you have overcome. Be extra careful to follow the guidelines to a tee as I trust you are sine you are immune compromised.
The others have given great ideas for how best to fill your time and cope with this social separation that we are required to do. If you happen to be a pet lover they can be of immense support and unconditional love in times like these. I know I have benefitted as much as my pets from all the extra attention and interaction with them. It is a blessing.
I encourage you to pay close attention to your physical activity level and make sure you walk and exercise (indoors or out if you can) to keep your new heart in the best of condition. All of us as heart patients are blessed with a new life to live thanks to the gifted medical teams, device manufacturers and in your case, a wonderful donor. We are the fortunate ones.
My very best to you and your family as we all navigate this worldwide health challenge together. Stay strong!
KdS27, April 8, 2020 6:09pm EST
Welcome and I wish you well. Just sitting outside in a chair I’ve met more neighbors than in the last 5 yrs. seems everyone is out walking and staying way enough apart.
I read in the paper that a lot of foreign language sites are now offering their services for free. I put it on my “to do” to check it out. Hopefully I can learn a new language while this continues.
depotdoug, April 8, 2020 8:53pm EST
High Apward, It is truly a changed world we live in, survive in, try to function in, just to even go enter a hospital today like I did.
Saying that I'm proud of you Apward for reaching out to all of us at Supportnetwork.heart.org forum group. WE've all got a slightly different story and mine is different from others. We still each have a Heart, yours is a renewed one.
I'm backin AFIB second recent time since my Valentines Day Cardioversion which didn't last 2 weeks. More importantly I was back in my Heart Hospital this AM for a CT-A angiogram scan pre-requisite for my RF Cardio Ablation May 6th. I'm tagged or tag myself as an E.E.C. guy, meaning excessive exercising compulsion guy. Yes, add now fighting advance prostate cancer stage 4 metastatic since Aug 2019.
I've told face to face my 1) Med Oncologist 2) my 2 cardiologists' 3) my EP doc, now on my 4th one 4) my PCP family doc, 5) Urologists' that Doug(E.E.C.) Doug is not gonna stop exercising. Not gonna stop. Keep on fighting. Even in AFIB and the Covid-19 never before experienced world we live in.
Keep on fighting Apward.
jcowin, April 9, 2020 10:56am EST
You are not alone! I had a heart transplant over twenty years ago. I have been working from home for nearly a month now and will admit I am going a little stir crazy. I have been very careful when I was going to the grocery, now I am not even doing that and will be relying on Instacart for my groceries, sanitizing my groceries when I got home and a washing my hands and sanitizing after I touched anything. Because I am immunosuppressed as well, I do not take any chances. I live with my sister and our dog, so at least I have some face-to-face contact. There have been many zoom calls for work, just so we can have some sort of way to see and interact with each other, other than being on the phone. My sister and I explained FaceTime to our mom and we have had some fun with that (she still does not exactly know how to use it so there is a little humor in in for us) as well as FaceTime with other friends. The way we are staying busy is by needlepointing/counted cross-stitch, cooking a lot more than we would, since we both work. I think it is a little harder for my sister since she is unable to work at all; she is a nail professional and had to close her business until May 1. We are also watching tv shows/movies that are funny. We are also trying to do things that look to the future like packing up and getting ready to move to a new apartment, at some point this summer. We are also trying to exercise. There are a lot of free workouts online/apps right now, which is great.
Canada, April 9, 2020 12:51pm EST
I am an AFib patient as of the past year. Warm welcome from Canada to a caring, supportive site. I am immunocompromised because of my leukemia and have a couple of other risk boxes that are ticked. So I have to be very careful,
My husbad and I were quarantined for a while after traveling so we have had to find ways to entertain ourselves. He likes to set jigsaw puzzles. I do a lot of reading online. I also do phone calls to friends and family for more connection, and FaceTime, etc.
I am part of several online forums so I see many resources for support. It's hard to know where to start in listing them since I don't know your interests. There's a lot of faith-based inspiration - videos to watch, articles, blogs. There may be other forums too that would suit your needs. Perhaps a heart-transplant forum. Or something that relates to your immune condition. You could try searching under your condition and COVID support. Zoom is a way many groups "meet" but there are also cautions/warnings about security.
A safety tip I've run across is the virus' life on surfaces:
Aerosol, copper - 4 hrs
cardboard - 24 hrs
stainless steel, plastic - 72 hrs
glass - 96 hrs
I did a long-term grocery shop yesterday and put the non-perishables directly in a spare room to de-contaminate. Left them inside the bags.
An example of a unique site that was offered yesterday - radio.garden/live Open the link and you will see the entire earth. There are green spots all around the earth which are local radio stations. Touch the green dot and play the local radio station. You can listen to any radio station in the world!
JamesPL, April 9, 2020 12:56pm EST
Glad you are not exposing yourself to any more risk than necessary. I like to exercise so I have taken many afternoon long walks. It really helps to clear my head. I also run during the early morning hours which has worked out well since I find I am literally the only person out at that time. My wife and I have had facetime conversations with our kids and grandkids and we have family group messaging almost daily which can be jovial most times. Helps to keep the sanity.
Wish you the best!
OnMyWeigh, April 10, 2020 8:21pm EST
Hello Apward, though I have not had your experience(s), I too am in rehab from an ischemic stroke 11 months ago , 51,married, father of five (13-4). I too "wonder" about my tomorrow! Especially since my children are so young. Sorry for your loss(es), yes 'unfamiliarity' can bring bewilderment and sometimes fear. Especially with what is going on here and everywhere; I wish there was a 'magic pill' we could all take and our problems could go away; my encouragement to you (as I have been told by others) is read through the psalms either app, online or hard copy, I can say after having been life-flighted, half my cerebellum removed and not sure about 'tomorrow', the book of psalms has encouraged me. LORD bless