Dancing til my feet hurt with new lungs: Meet @chickytina

Jan 30 10:00am | Rosemary, Volunteer Mentor | @rosemarya | Comments (19)

@chickytina with family, member spotlight

ROSEMARY: What brought you to Mayo Clinic Connect? 

@chickytina: I had a lung transplant at Mount Sinai Hospital in 2022. They didn’t have a support group for patients. Although they know all the medical answers, it’s not the same as someone that has gone through it. So, I did a google search and I found Mayo Clinic Connect. I started reading some of the responses from other members. Based on the information being given and the feeling of support, I signed up as a member.

ROSEMARY: What motivates you to take part in the community?

@chickytina: I believe God had me go through this lung transplant for a reason. I believe the reason is to support others. I have made myself available for anyone that is going through the same process at the hospital where I had my surgery and wants to talk to someone that has already gone through it. I have been a member of a panel of lung transplant recipients on a forum of patients who are either thinking about getting, or are listed for a lung transplant at one of two hospitals here in NYC. I also participate in the Mayo Clinic Connect community to be able to ask questions of others and also to share my experiences unfiltered to support others.

ROSEMARY: What about Mayo Clinic Connect makes you feel comfortable to share and to be open with the community?

@chickytina: I have not seen where anyone judges you on Mayo Clinic Connect. It feels like a warm safe place to exchange information and ideas.

ROSEMARY: What groups do you participate in?

@chickytina: I belong to the Transplants Support Group and the Lung Health Support Group. I also get information about Events in the daily digest email, but haven’t participated in any yet.

ROSEMARY: Tell us about a meaningful moment on Mayo Clinic Connect.

@chickytina: There have been a few memorable moments on Connect. One of which is when you reached out and asked me to share my transplant story. There are many times that I have responded to something that was shared by someone on Connect where I feel my experience might be useful and I have asked some questions. Connect has a way of making you feel like part of the community and not the only one going through all of this.

ROSEMARY: What surprised you the most about Mayo Clinic Connect?

@chickytina: At first, I was afraid that once people found out that my surgery was at Mount Sinai, I would be kicked off Mayo Clinic Connect. It surprised me when I was informed that it was open to everyone regardless of where they were or are being treated. Since then, I have recommended Mayo Clinic Connect to friends who are going through the transplant process or who have lung issues and other ailments that I know are covered in the many support groups on Mayo Clinic Connect. I know that I don’t have all of the answers, but the answers can be found here.

ROSEMARY: What energizes you, or how do you find balance in your life?

@chickytina: I used to work an average of 60-70 hours a week, plus being a mother and wife, for many years. Unfortunately, due to other health issues that have arisen since having my transplant, I am unable to work at this time. So, I have more time to dedicate to supporting others going through the process and for supporting my church. Since I became sick and wasn’t able to work, I was elected an Elder at church, Chair of the Finance and Administrative Committee, Head of the Audit Committee and Zoom Deacon.

My son is a teenager, so he doesn’t need me as much as he once did and really stepped up when I was sick (thank God), so I just need to be there for guidance when he needs it. I do look forward to going back to work once my health issues are resolved though.

ROSEMARY: Tell us about your favorite pastime or activity.

@chickytina: I am a person that loves playing Sudoku, Wordle and other games on the computer. I will do the ones from the NY Times and others online up to 16 words at a time. I tried the one with a hundred words and it was just too much for me to keep straight at one time. Maybe once I get rid of my headache (one of my health issues that I have had for almost 10 months straight now), I will try to do the ones with more words as a test to see if I can keep things straight and will be able to return to work.

ROSEMARY: What food can you simply not resist?

@chickytina: I absolutely love ice cream! I had zapote ice cream while on vacation in El Salvador, which is the only place I know that I can get it. I actually love anything made with zapote or just eating the fruit by itself.

FYI, zapote is also known as mamey sapote. The orange-fleshed fruit has a taste comparable to a brown sugar-covered sweet potato, with undertones of pumpkin, caramel and cantaloupe. Zapote is delicious in juices, smoothies, milkshakes and baked goods.

Too bad you can’t get it in this country because it does not have a long shelf life. However, since I can’t get zapote here, I eat ice cream of all different flavors. I prefer fruity ones like mango or with some chocolate pieces in it, but not chocolate by itself.

ROSEMARY: What do you appreciate the most in your friends?

@chickytina: My friends were with me emotionally when I was sick and now, as I am getting better, they celebrate with me emotionally and physically. On December 29th my husband and compadre (Goddaughter’s father) hired a band for a small party of friends and family. I danced with so many friends and family members for almost 3 hours that I lost one of my earrings. I discussed with my husband how 2 years ago, I could barely walk, now I am dancing Cumbia! My husband and others were out of breath, but for me — only my feet hurt in my heels now that my lungs are strong!

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How nice to meet you @chickytina! I just love to read the stories posted from transplant patients like yourself. I realize what a difficult place you were in before your transplant and how it has provided you with a new chapter of life. Congratulations on finding Connect and sharing your encouraging story with others!

Thank you @rosemarya for this great interview.

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@chickytina It is great to hear your recovery is going very well and I hope the headaches go away soon! I too like to keep my mind challenged with word and number games - our minds need exercise too, especially when our bodies might be limited. I especially like how you say this forum isn't prejudiced against non-Mayo patients like us. Most of them know that there are geographical obstacles for a lot of us, sidled with Mayo's limits on how many patients they can see and may be able to help in ways our current medical teams aren't doing. This forum allows us to connect though with some of those Mayo patients too with very similar conditions or symptoms, so I feel like we're getting a little Mayo medical diagnostic confirmation through their experiences. I too find this forum's best value is meeting all the patients with actual experience in living through the similar medical situation and being able to share tips about product and lifestyle aids to help us get the best quality of life while dealing with the illness challenges. It was good reading about your positive experience - keep dancing!

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@chickytina You are such a positive spirit and I'm so happy that you found "us". I'm not in the Transplant Support Group so I haven't read your posts (I'm going to change that as soon as I finish writing this). As you now know we have people from all over the world who come to Mayo Clinic Connect. The exchange between our members and how they support one another is truly a blessing. With your recovery and strong lungs I can just imagine how you danced until you were the only one left standing in the room. Thank you for sharing your story with us. Keep on dancing.

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@dbeshears1

@chickytina It is great to hear your recovery is going very well and I hope the headaches go away soon! I too like to keep my mind challenged with word and number games - our minds need exercise too, especially when our bodies might be limited. I especially like how you say this forum isn't prejudiced against non-Mayo patients like us. Most of them know that there are geographical obstacles for a lot of us, sidled with Mayo's limits on how many patients they can see and may be able to help in ways our current medical teams aren't doing. This forum allows us to connect though with some of those Mayo patients too with very similar conditions or symptoms, so I feel like we're getting a little Mayo medical diagnostic confirmation through their experiences. I too find this forum's best value is meeting all the patients with actual experience in living through the similar medical situation and being able to share tips about product and lifestyle aids to help us get the best quality of life while dealing with the illness challenges. It was good reading about your positive experience - keep dancing!

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Thank you. In my case, my insurance would only cover one hospital for the surgery. So I didn't really have a choice where I would go. Although I was/am very happy with the hospital and the team. Although the weirdest thing to me was that they offered turn down service when I got to out of the SICU (surgical ICU). When I saw the card, I laughed and no I never took advantage of the service. I thought the nurses and other staff had enough to do.

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@hopeful33250

How nice to meet you @chickytina! I just love to read the stories posted from transplant patients like yourself. I realize what a difficult place you were in before your transplant and how it has provided you with a new chapter of life. Congratulations on finding Connect and sharing your encouraging story with others!

Thank you @rosemarya for this great interview.

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@hopeful33250, I have to admit that I like to read posts from transplant patients, too! Hearing about their journeys with all of the ups and down that lead to a new life is always an inspiration as they share their 'secrets' of patiently hoping and waiting for a transplant.

It has been an honor to be able to work with @chickytina on this interview. I hope that her positivity will inspire others, especially anyone who is waiting for a lung transplant.

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@chickytina |- I want to publicly say, "Thank-you" for participating in a Spotlight.

You and I have crossed paths in the Transplant Support Groups as patients who share some similar post transplant issues, however in this spotlight, I feel like I know you better. I think that we could have a good time together if we lived near each other. I would enjoy the ice cream, but I'm n ot sure if I could keep up with the dancing!

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Hello, thank you for posting your incredible journey so far. I am thankful for your stories and info as they encourage me in preparing myself to be in the right mindset when I am listed (which can be any day) and then called to start my next journey in life. I hope I will then have enough energy to give back and dance until my feet hurt...God Bless each of you who have gone through, going through the transplant process or have any type of chronic condition🙂

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@helenrivera

Hello, thank you for posting your incredible journey so far. I am thankful for your stories and info as they encourage me in preparing myself to be in the right mindset when I am listed (which can be any day) and then called to start my next journey in life. I hope I will then have enough energy to give back and dance until my feet hurt...God Bless each of you who have gone through, going through the transplant process or have any type of chronic condition🙂

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I wish you luck and good health in your journey. Remember even small set backs don't have to deter you. I contracted COVID again (first time since my transplant). I started symptoms on 1/1/24, but was on vacation in El Salvador (first trip outside the USA). At first I thought the sore throat was caused by smoke from the fireworks that night before (even though I was wearing two masks). I called my team who told me to take extra steroids on 1/2/24, which is the day we were flying back. Tested positive 1/3/24. They put me on a medication for people with transplants that catch COVID (don't remember the name) for 5 days. Then I had a bronchoscopy with biopsy on 1/25/24. I received the results 2/1/24 that I had the beginning of rejection, so they had me come to the hospital for IV steroids and another medicine. I am still in the hospital getting my IV transfusions and am waiting to have another biopsy done to see those results. I have been told that I am a light and that is why I am here is to shed some of my light on others that are in the hospital and that work here. I just trust in God and let him take my worries. Although this is a set back for me, I will get through it and be back to doing what I want to do soon.
Try to remember when you are going through everything that it's going to be better, God loves you, and you are strong enough to get through it.

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My prayers are with you for a speedy recovery🙏🏼🙏🏼 Keep shining your light. 🙂

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Terrific recommendation.. Gracias... desde Ecuador. ¡Buena chica!

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