Dealing with the pandemic

[Estrea]

Hi. I had 3 vaccines and didn't receive antibodies. Is anyone else feeling so fed up with being immunocompromised? How are you dealing with it? I would love to hear from others going through similar feelings of isolation and hopelessness for the future. I wonder if I am being too paranoid or if I should start living my life again. Thanks.

[Hidden]

Hi Estrea…Nice picture 😊. Anyway, I am 14 months post living donor transplant. While I’m so grateful for the gift of a new kidney the pandemic is really straining my emotional well being as well as my personal relationship.

This summer I declared “I must have married the right woman as I’ve been with her 24/7 during the pandemic!” And, we didn’t kill one another—figuratively, of course.

However, as we go into another season of COVID, with the possibility of another surge, I’m reaching an emotional breaking point. I think the question is how do we remain safe and sane being an immune compromised person during COVID?

The things I like to in order to manage this rather stressful time, include:

A) making all efforts to mitigate COVID. This includes acting as if I had not been vaccinated 3x and all that it entails. My wife and I are pretty much in a two person bubble. And, over the last month we’ve had some arguments that I call doozies.

B) Eating well, exercising, and making sure I laugh. My wife says she loves to hear me laugh. Just revisiting Ted Lasso is enough to make me feel good about me.

C) attending my virtual talk therapy. I’m Roman Catholic and my therapist is Christian. The spiritual dimension is also a nice dimension to explore during therapy.

D). Finally, being grateful for the gift of a new kidney. My wife and I have new friends in Elsa (my donor) and Esther (the recipient of my wife’s kidney). I feel a great sense of solidarity with this family.

Best wishes in the months to come. Please realize you are not alone.

Christopher

[Estrea in reply to Hidden]

Thank you so much for your generous reply. It helps me so much to know that I am not alone. I too met my donor family and established a nice relationship. I too am so grateful for this gift. I must remember the good things.

[Hidden in reply to Estrea]

The funny thing I do those things, follow those habits and I’m still feeling crappy 😷

[Eyak1971]

As I listen to the news on advances being made in new medicines - the covid pill - it brings me hope that the future will be better. I can not at this point expect everyone to get the vacine to make my environment safer but I am happy that I live in a state that takes covid seriously. People wear masks and get vaccinated out of respect for others. The pandemic is not over so we will be in a restricted life style for a while. But it does give us a chance to reevaluate what is important. Even being immune compromised I feel fortunate that I have a small retirement income and can choose to isolate for safety purposes. For those younger transplant patients who must work and be in constant contact with others I wish them the best. The pandemic is stressful but there were other stressful moments in our history but life was better on the other side. After ww2 the US blossomed and life was good. It may take awhile and I have to be patient but life after the pandemic Will also be Good. That is what keeps me emotionally under control. That and really taking time to enjoy the outdoors and nature. It may not work for all but we each have our own coping mechanism. The best to you. Take care.

[Estrea in reply to Eyak1971]

Thanks for replying. Yes there are hopeful things on the horizon. I guess we just have to hang on and be positive. I am trying. It helps to not feel alone so thanks again 😌

[newyork8]

Live your life but be careful. Get Regeneron...you will have antibodies possibly for 8 months...similar to if you were vaccinated! You will be more at ease.

[Estrea in reply to newyork8]

I'm not familiar with regeneron. I called my kidney doctor and they don't know about it either. Hopefully they will call me back. Could you tell me more about it and how I could get it?

[newyork8 in reply to Estrea]

Monoclonal antibody for Covid

[NoCaGirl in reply to newyork8]

Did you get monoclonal antibody treatment for a covid infection you had or did you get preventive treatment? I asked for compassionate use of it because I had no antibodies after 3 vaccines but they told me no- enroll in a study( although they are not even recruiting yet) so frustrating. They should get EUA for this for us- we deserve protection too, if vaccines don't work.

[newyork8 in reply to NoCaGirl]

No infection. I suspected possible exposure as my kids are in school. No proof required just my statement. I also 4 x vaccinated and no antibody...post Regeneron I have 2500 antibodies. The max. They WANT to give Regeneron in Fl. Don't have to beg or lie or pay.

[NoCaGirl in reply to newyork8]

Wow- that's great! You're in Florida? I wonder if it'll be that easy here (CA).

I'll try that, though for sure. I think we're all at high risk of exposure just being out in public- who knows if that person next to you in grocery store has it and doesn't know or doesn't care.

Who do you tell you've been exposed- your doctor? Or a hospital/clinic? Did you get the infusion or the subcutaneous shot?

It's great you had such a strong response! Thanks again for the info.

[Gardner-NY]

HI Estrea, thanks for writing how you are feeling so isolated. My spouse had his transplant 3 yrs ago this month and is retired, and I his wife work full time but was able to return to college campus in a more remote office area. I rarely see anyone to talk to and keep my door shut. My spouse and I experience with isolation is much longer than March 2020 when covid19 shut down the world "so to speak", ours started Dec 2018 and has lasted through now nonstop. So I am still trying to figure out how to handle isolation. I'm an extrovert married to an introvert. I'm in my first in life depression since spring 2020 and since my counselor retired 4/20 I was not able to obtain a new one until June 2021. To me everything you do is a bandaid fix, it helps a small timeframe and then how you feel isolated starts to creep into your feelings. I'm running out of bandaid fixes. So we have been married over 40 yrs and this has been the most challenging journey in our lives dealing with many problems for 13 mos after transplant and now with covid (he is better--but still has medication side effects). I wish I had answers. I really really do. I've lost long time friends in the past 3 yrs due to them not understanding the rules my spouse and I live by to keep him safe medically from covid. We just keep things 'light hearted' whenever possible at home. We watch tons of assorted tv shows/movies/documentaries, cook a variety of meals and though we are very bored, we just keep pushing forward somehow. I 'get it' how you feel and glad you brought up this topic. Please write back with things you do as your "bandaid fixes". Here are mine:meditation, counseling sessions w/ a therapist, journaling often, listening to music, writing letters to friends and mailing them, and spending less time using email (I'm not into social media), and exercising and taking care of my health.

[Estrea in reply to Gardner-NY]

Thanks for replying. It really helps to identify with others. I'm sorry you have been in lockdown for so long. Some things I do besides the ones you already mentioned are taking online classes like spanish, English, journaling, etc. With my library. I also call warm lines and hotlines when I am really feeling bad. AARP calls me once a week friendly chat call. I'm not sure if you have to be over 55. I agree with you when you say that they are bandaids. I'm hoping things will improve in the future. Take care and try to enjoy the best way you can.

[Gardner-NY in reply to Estrea]

Glad you are finding new bandaids too. I get overwhelmed by it all at times, like this week. i work full time and only do zoom type meetings though others on campus are doing in person meetings like covid never existed. I don't have to, but I get a covid test every Monday the college offers for free just for insurance. I cannot bring this home to my spouse. Three years of no vacation of any type and other things you cannot do that others can do after a while gets to you, to be honest. My spouse and I are very rigid in the rules we created on what we can and cannot do so that covid does not come into our home. Prior to that it was rigid due to how poorly he was doing after the transplant for about 13 mos of assorted problems. Its been a very long road. I wish I could give you a hug. I am tired of hearing "hang on things will improve" to be honest. I just live in the moment/the day to be very honest, that's another bandaid.

[Estrea in reply to Gardner-NY]

Hi. I'm fortunate enough that I don't have to work right now but I am looking for a remote job. It must be tough dealing with your situation. I find it frustrating when other people don't follow precautions or understand why I am being so rigid. I'm looking forward to a time when I can work and socialize with people. I guess the worst time for me is in the evening because I live alone and really miss that human connection. I am going to try to start gratitude journaling at that time. I usually try to reach out to someone at that time. Sometimes I get someone who just doesn't understand but sometimes it really helps. I hope in the future we can both find solutions. Take care.

[Gardner-NY in reply to Estrea]

Thanks for sharing your life and concerns with me. I get it. I have several friends who are healthy and live alone and this covid isolation has them having issues due to not having people easily /physically to be with. For me, the zoom type of meetings with people I am not a fan of. I don't know why, but I don't like them. At work I do them for its safer than being at a meeting with 12-15 people crammed around a large conference table. For me it is the duration of time that I've been living isolated that has me concerned and mentally drained especially if I am having to deal with complicated problems to solve in my day too. Do you have a pet? I have 3 indoor cats and they help alot in being another 'bandaid' fix. I like your idea to find a remote type of job or even if you wanted volunteering. Either is a great idea. Are you retired already?

[Hidden in reply to Estrea]

Gratitude journals are supposed to be great for the mind. My therapist has me doing a journal:

1. Name three things you are grateful for.

2. Explain why you are grateful for them.

3. You can repeat the person, event, thing you’re grateful for but you must change the “why you are grateful” part.

[bdbo]

Hi Estrea,I have had my mom's kidney for 28 years and am eternally grateful for her, for my transplant, and the many years i have experienced because of it. From the time I was 24 and had my transplant I never viewed it as something that had to stop me from living and experiencing life. I had a career, I traveled, went to restaurants, concerts, museums, etc. Finally as I got older my biggest dream, a husband and 3 children, I was blessed with. Since Covid, and I too have had the three shots, I have lived in my home and have not gone shopping to a store, to a restaurant, and only visit with my parents and brother outside and masked. My husband works in a hospital around patients with Covid and my children were to young to be vaccinated until recently so we decided to homeschool them to try to keep them and me safe. Sometimes I feel isolated too and long for the things I could do prior to Covid. It is at those time that I try to remember the many things I have to be grateful for, the fact that I am alive, that I have my kids and husband. I also to try to think of how i would want them to remember me if I did get Covid and passed away. I try to embody those things in my daily life so that my children and husband will know the true measure of who I am. And those things actually provide a different kind of fulfillment to my life (like teaching my boys to read and seeing how well they read now, the many subject we have studied together, the many meals we have cooked together, the books we have read out loud with the family and enjoyed, the walks in nature, the birds we have seen, etc). I guess I am finding joy in the simple things now and they give me hope to move forward each day. I wish you good health and happiness. You are not alone in how you feel....

[Estrea in reply to bdbo]

Thank you. Yes I appreciate you sharing. Your gratitude is inspiring. I'm going to try to be more positive. Sometimes it is hard but there is no better option. Take care and enjoy your time with your family.

[NoCaGirl]

Hi- I feel your frustration. I, too, have no antibodies after 3 doses. I'm also asplenic which makes my immune system even less strong. You are not paranoid at all. Transplant recipients have a much higher rate of breakthrough infection (82×) and a significantly higher rate of serious illness or death (i seem to remember about 485×)with covid (Johns Hopkins study published in Transplantation).

I am doing the same things as the others- masks, isolation, etc) but it's very frustrating after so long. I try gratefulness and changing perspective ( without transplant, is not be alive). It is challenging and I'm looking forward to progress toward normalization- covid pills and better treatments, better prevention protection for those for whom vaccine offers none...

Keep positive! It helps me to"talk" to others who understand and are in same boat.

[Alfredmynewkidney]

It can be so stressful but I choose to live my life. I have no antibodies either. I am 18 months post transplant and work full,-time. I go to Disney world and on vacation. I wear a mask and use a lot of hand sanitizer. I don't eat out often and at work I eat by myself. But I didn't get a new kidney not to live my life. Just my opinion and how I live my life.

[Alfredmynewkidney in reply to Alfredmynewkidney]

I had to return to work so I guess that is why I am not as isolated. I was off for 12 weeks after my transplant but other than that I work full time as a nurse. I do have an exemption from working with COVID patients so I am thankful for that.

[WYOAnne NKF Ambassador]

I did not have a transplant to stay hidden in my house. I am 22 years post transplant from a deceased donor. I have both vaccines and the booster. I am careful when I go out, but am not afraid to go to the store or restaurant. I did have the rest that I do have antibodies against COVID.My nephrologist told me to be careful and do common sense things - like washing my hands and wearing a mask if at a high risk area. We recently went down to he Denver area to do some Christmas shopping and spent 2 nights, eating all of our meals out. That county had a mask mandate and is a "hot" spot and everyone wore a mask in stores and restaurants. We had no problems.

Everyone is different, so I would advise Estrea, that you talk to your nephrologist.

[Hidden in reply to WYOAnne]

The only problem with this attitude is there are no “do-overs” with COVID. Once ya got it, you got it. I choose to be in a bubble because I don’t want to die gasping for air because I was seeking a momentary, yet fleeting, thrill. I know a family whose husband is immune suppressed, got COVID, only 10 months later is he somewhat recovering.

For you to insinuate — that since the rest choose to isolate — we are hiding is offensive. That’s exactly what you’re doing by suggesting the term hiding/fear are the only words to describe those who follow genuinely sound health guidelines.

I can’t even reasonably respond to the goof, who posted above, who chooses to go to Disney.

[LisaSnow in reply to Hidden]

We each have to respect others' choices. But I do agree with you that assuming the more careful people are too fearful or are hiding from life is a little insensitive.

[WYOAnne NKF Ambassador in reply to Hidden]

Like I said in my post "..we are all different." I was only saying what "I" do or have done. Reread my post. That is why I also said that Estrea should discuss this with her nephrologist. What my nephrologist told me is OK, may not be what yours tells you. That's why we are all different in our choices. What's right for one is not right for all. You have to realize too that I am 22 years out from my transplant and do have antibodies.Hope you have a great Thanksgiving!

[Alfredmynewkidney in reply to Hidden]

I'm not a goof. I'm an educated medical professional. I am not downplaying anyone who chooses to be in a bubble. My dad has had a kidney transplant and him and my mom pretty much are isolated all the time. My doctors are OK with my going out as long as Iam careful. I have a genetic kidney disease and no other co morbidity. Perhaps that is why I have not even had a cold since getting my transplant 18 months ago. I work 52 hours per week and enjoy my days off. I'm sorry if I offended anyone. I was just sharing how I live my life.

[Estrea in reply to Alfredmynewkidney]

Sorry if I opened up a whoe can of worms. I just wanted some support. You are definitely entitled to your opinion as I am sure you know. We are all here to support each other and some of us are in different situations. Good for you that you can live your life. I wish you the best.

[Daledavey]

Stay strong you go through so much daily but live your life it will take your mind from it

[Transplant2018]

I well understand your frustration as I also have no antibodies following three vaccine doses and have remained extremely cautious. In addition to focusing on how extraordinarily grateful I am for my transplant, I focus on thinking that a solution is in sight. There are products now before the FDA for EUA that would directly give us long-acting antibodies that we can't produce ourselves and provide us a way out of our isolation.

[klb36 in reply to Transplant2018]

just be as safe as you can i am 37 years transplanted i am not anti vaxer but i am not vaccinated i work more than full time as a seafood manager for a grocery chain. I understand all what you are felling. I myself chose 37 years ago not to fell bad about my situation and try to live life to the fullest. I have all the side affects of the transplant drugs that most have i get up everyday with a smile and am thankful for each day. like my mother used to say when life hands you lemons make lemonade. best of luck to you.

[littlelinda50]

I am post transplant 2 years and I go out not a lot. I also am going to actual college and going to be working in the medical field. I am not vaccinated by choice. Do I fear about getting the virus of course just like everyone else. I take my precautions and live my life.

[horsie63]

Ah, here it is Aug 2022 and the new variants are very catchable. I'm not transplanted...yet. I took precautions, got vaccinated, wear a mask if counts get high or work from home. That said my husband went to a wedding Jul 1 and Jul 8 I got Covid. Luckily me PCP got me monoclonal antibodies.