Another (Happier) Update from Chad & Lindsay

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I'm Tina

I’m the owner of Carrots ‘N’ Cake as well as a Certified Nutrition Coach and Functional Diagnostic Nutrition Practitioner (FDN-P). I use macros and functional nutrition to help women find balance within their diets while achieving their body composition goals.

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Hi Everyone! It’s me, Lindsay! Again!

I know Tina mentioned it in her post the other day, but I come bearing the good news that my wonderful fiancée Chad is FINALLY out of the hospital! After his double lung transplant on July 7, he was discharged last Thursday, October 31st. YAY!

Last time I was here, Chad was finally gaining the ability to breathe off of the ventilator. He was in the respiratory acute care unit (RACU), and right around that time, we received the unfortunate news that his insurance would not pay for him to go to rehab. This was a huge bummer, but we managed to make the best of it. It was decided that he would remain as an inpatient at Mass General until he was ready to go home…so that’s what we did! With the help of the wonderful physical and occupational therapists here, we came up with our own rehab plan and started following it daily. Chad started to make great progress and before we knew it, he was up and walking laps around the floor, transitioning quickly from a walker to a cane!

standing

Not long after that, Chad was transferred from the RACU to Blake 6, MGH’s specialized transplant unit. It was a bit of a rough transition, but we eventually learned to love it there (as much as you can love somewhere in the hospital). In early October, we thought that we were on the home stretch, but as the doctors started talking about discharging Chad, he started to not feel so great. After a few days of a cough and chest congestion, a bronchoscopy showed evidence of a pretty severe pneumonia, and any plans for discharge came to a halt. They started Chad on the appropriate antibiotics, and within a few days, he started to feel better.

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Unfortunately, the medical team was able to tell by the results of the bronchoscopy that the pneumonia was caused at least partially by aspiration of food. They then ran a battery of tests of Chad’s GI system and discovered that he has something called diffuse esophageal spasm, a condition in which his esophagus does not coordinate correctly to push food into his stomach. Instead, it moves up and down in a disorganized pattern and some of the food ends up in his lungs, causing pneumonia and potentially irreversible damage (like the episode of acute rejection he experienced a few weeks ago). There are no medications or surgical fixes for this problem – the only thing we can do is give it time to correct itself. Until then, Chad will get 99% of his nutrition through the tube in his stomach. He is allowed 4oz. of food (anything he wants) by mouth, every day for pleasure. Definitely not fun at all, or anything he ever wanted to hear or experience, but incredibly, Chad has kept a smile on his face and a positive attitude about him throughout. He is such an inspiration.

Fortunately, it’s pretty easy to do tube feedings and IV antibiotics (which he’s still on until the end of this week) at home/outside of the hospital. So, since he was feeling well and everything looked good, we received the OK to get the heck of out MGH! Chad is now up, down, and all around, walking and doing things for himself all on his own. It’s simply amazing to see just how far he’s come since earlier this summer. Leaving the hospital after four months was a huge mix of emotions, one of them being disbelief that we were actually leaving…but the overall feeling was one of extreme happiness and excitement to finally be OUT!

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Unfortunately, as much as we’ve tried to make it otherwise, these feelings have been pushed aside slightly by those of worry and financial insecurity. Because of other issues (his bout of kidney failure, for example), Chad requires a very expensive, specialized formula. We’ve been experiencing some issues recently in getting his insurance to pay for it. The cost of the formula and supplies is incredibly high, and something we simply cannot afford, especially in addition to the costs we have incurred both in and out of the hospital over the last four months (food, lodging, transportation, etc.) as well as our bills at home.

Chad and I finally had the chance to meet Tina the other day. We had a great time talking with her and sipping on delicious Starbucks drinks (mmmmm, peppermint mocha). After catching her up on the latest happenings, Tina so graciously offered to lend us some space on Carrots N’ Cake again to update you all on Chad’s progress and to share with you all a link to another donation page that has been set up for us. I almost feel like a broken record putting another one up here, but the response to Chad’s story has been so incredible, and you all have been so kind, generous, and giving. We said to Tina that the help you’ve all provided us with has left us with the most amazing feeling – there is so much good in the world, and it is very humbling.

I ask for you all to take a look again and share Chad’s story and the donation page with anyone that you can. Think about how much we could raise for Chad if everyone donated even $5.00? You’ve all done more than enough for us already, but we hope to spread Chad’s story and the inspiration that comes from it even further. The link to the donation page can be found here: https://www.giveforward.com/fundraiser/fbd3/chad-kiniry-s-lung-transplant-rehabilitation-fund

Thank you all so much for your help, well wishes, and for following us through our journey. We couldn’t have done this without you!

Lindsay & Chad

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16 Comments

  1. Hi Chad and Lindsey, I am a social worker in Philadelphia and I work with transplant patients and their families. I would encourage you to look to http://www.HelpHopeLive.org as well. it is also a fundraising program, except it was designed specifically for transplant patients (and now is available to all catastrophic medical patients). We have a program called Caregiver Lifeline Program (http://www.giftoflifefamilyhouse.org/resources/caregiverlifeline/) which is specifically to help address the needs of transplant caregivers (I am sure this process has not been easy for you either). There are a few articles written for transplant caregivers and numerous resources. I love Tina so much! I talk about her posts to all of my friends and transplant and organ donation is so near and dear to me since I work with patients and families affected by it everyday. I couldn’t not comment on your post and am so happy to hear Chad was discharged and very unhappy to hear you’re having insurance and financial concerns. It’s wonderful that someone said yes to organ donation giving Chad a second chance. Good luck with everything and I look forward to hearing more about Chad’s progress.

  2. Thank you so much for helping raise awareness on the struggles of being a transplant patient and thank you for helping them raise some much needed finances!

  3. This is a beautiful story – i love that you’ve reached out for help and the community has responded with open arms! It’s so nice to hear about the good in the world. What a joy is must be to be out of the hospital just in time for the holidays! Literally, you’ll be home for the holidays 🙂

    I’m keeping both of you in my thoughts and prayers.

  4. As an inpatient dietitian, this is unfortunately something I see all the time – insurance companies refusing to cover the specialized formulas patients need, or refusing to cover any tube feed at all if the patient can physically swallow, regardless of how malnourished the patient is and how much the medical team says the patient NEEDS the tube feed. The other issue is insurance saying they won’t cover rehab when a patient is medically ready for discharge, so they are stuck in the hospital for months on end when they do not need to be. Really hoping for some positive change with healthcare soon!

  5. Hi Lindsay, I too work as an inpatient dietitian and have seen the struggle that individuals sometimes go through to get the formula they need. Have you heard of or looked into the Oley Foundation? http://www.oley.org On their website, they have a list of formula that people have and don’t need and are willing to donate. Often times the only cost to the person in need of the formula may be shipping. They list is constantly updated. The other option may be to reach out to the company who makes the particular formula. Sometimes, depending not the company they may be able to work with you to get it for a lower cost. Hope this helps! Good luck!

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