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Family and friends of John Jaeger are raising money to help assist with medical and living expenses associated with care and preparations for a double lung transplant. We chose to fundraise though Help Hope Live in part because donations are tax deductible for contributors and will only be used to cover medical and related expenses.
Prior to his diagnosis of Idiopathic Pulmonary Fibrosis in December of 2021, John lived an active life. He enjoys spending time with family, group camping trips, cheering for his grandkids at their sporting events and maintaining his property by mowing and gardening. He is often heard telling friends and family that he had his kids young so he could enjoy time with them and any future grandchildren. In the summertime he can usually be found out on his back deck soaking up the sun and singing along with his music- usually Jimmy Buffett.
In addition to the diagnosis itself, the symptoms and complications of this disease have all severely and negatively affected John’s quality of life. After his diagnosis he started a medication meant to help manage and hopefully slow the progression of the disease and began using oxygen 24/7, both of which while medically necessary have limited his ability to live life as he’s known it. He often can no longer attend the part time job that he enjoys due to weather conditions like wind and rain that make it harder then ever to breather. In addition, he now struggles with daily anxiety attacks, weakness and nausea. In the Fall of 2024 he found out the medication is no longer helping and the next step would be to seek a double lung transplant.
John is entering this new phase with renewed hope, and a positive outlook. He’s confident that once approved for and having completed the transplant he’ll have a brand new lease on life! He and his wife Diann have already begun the evaluation process, spending about a week at UPMC in Pittsburgh for testing, meetings etc with the transplant staff who will determine his eligibility.
The transplant process will be an arduous and expensive road and John and his family are asking for any support you can offer as they navigate things step by step. Expenses will and have already begun to add up including transportation, medication, hospital, etc. Any support you can offer, certainly financially, as well as in the form of prayers and well wishes is greatly appreciated. If you are unable to contribute financially, please consider sharing this post with friends and family to help us spread the word and gather support for John! If you have any additional ideas for fundraising opportunities for John or ways to share his story please don’t hesitate to reach out.
Thank you in advance for any and all support!
Love,
John, Diann, Jennifer and Janelle Jaeger
Dad’s been working hard to gain weight and increase his exercising in preparation for his next visit with the transplant team in August. Since our last update he’s had the cancer on his kidney completely removed, gone through a major med change that’s finally getting him some relief now that he’s eliminated the side effects of one medication while working hard to get the right dosage on new meds to combat the ever-present anxiety.His main goals ahead of the August trip to Pittsburgh are to gain weight and increase his strength in his pulmonary rehab. He’s struggling with the weight gain but now that he’s off the med that had so many off limits foods associated and stomach side effects, he’s getting back on track with eating and he hasn’t lost anymore weight so we’re moving in the right direction. Last week he ran out of insurance coverage for his pulmonary rehab which he had been attending three times per week. It’s disappointing since that’s been such an important part of his work towards a transplant and being at the rehab center with a group and with medical professionals was so good for him, but we’re doing our best to compensate at home. He’s working on his strength training with weights and building up his endurance on the treadmill still at home and we’re going to get him on the stationary bike next!Thank you all so much for checking in, sending prayers and well wishes and all of your contributions financial or otherwise. It means the world to all of us and we’re so thankful!
Dad was able to have a successful cryoblasion and biopsy done for the tumor on his Kidney. The urology team will recommend to the transplant team that he be able to finish his evaluation to hopefully be put on the Transplant list for new Lungs. Later this month they will meet with mom and dad again in Pittsburgh. The costs of travel, lodging, medications, tests, procedures and emergencies continue to pile up and with mom the only one working and everyone taking time off to help things are stressful. While dad struggles every hour of every day and has become only a small part of the man we all know and love, he is still hopeful that new lungs will give him back the life he loves.
Good morning, it’s been a bit since we’ve had much to update so I wanted to share what where we are now. We were able to get the approval and obtain the oxygen equipment for the house as well as a new portable unit so dad can continue his Pulmonary rehab and hopefully get back to his pt job that he enjoys so much. As far as the transplant and further testing for the Kidney mass that was found, they will head back to Pittsburgh and stay through Tuesday. This visit will be for additional tests and labs that the Transplant Evaluation Team requested, along with the Kidney MRI, Urology work up and several different liver tests. Once all of this is completed the Transplant team will meet again pending the results. While there is a place for mom and dad to stay up there, it is not free. There is the cost of The Family House, fuel and food while they are there. In addition any copays or deductibles for these tests, some of which are considered invasive procedures. Please share the page with this update to help with visibility so we can help with costs for this upcoming stay. The first long stay for the initial evaluation was over $1800.00 in out of pocket costs. As always we continue to be hopeful, taking this all one day at a time and are extremely thankful for our family, friends and community support in all ways.Jennifer & Janelle
Thank you so much to everyone who has donated, left a message, checked in or is following along. We got some news today along with next steps to get Dad one step closer to the transplant.Dad got his new in home oxygen machine this afternoon and heads to Erie tomorrow to be evaluated for a new portable unit. If approved, it will give him back some of his freedom including, hopefully with the increased oxygen, the ability to get back to his part time job.Mom and Dad will be heading back to Pittsburgh soon for next steps on the kidney mass and some additional scans.Overall, there are still some additional tests and steps to take but if all goes well and the mass on his kidney can be removed he’ll be able to move forward toward the transplant list. While it’s not an outright “yes”, the news and next steps from the transplant team are in line with what we expected and Dad’s transplant coordinator seems optimistic as well. Please continue to keep Dad in your thoughts and prayers and we’ll keep the updates (and hopefully good news) coming!
Hello! This is Jen, i wanted to post an update on where we are as of today. Sometimes we may have a lot to update on and some days not so much but I know that some of you follow this page. It can be quite overwhelming to remember who I updated and who I didn't so I also try to be sure to post here. Dad is home. He had his kidney scan yesterday morning. It was recommended that a full work up and biopsy be done. Pittsburgh will be spearheading this and the workup and biopsy will happen up there. It was decided that heading back there for this is the best option. With the results of the minimal lung capacity dad has it was also decided his daily Oxygen level needed to be raised. The portable machine that he uses to go anywhere outside of the house is no longer effective. He needs a better portable with better battery life and more capacity. This has presented a challenge with insurance coverage as well as having to change companies. The company that we got the previous portable from does not make the higher capacity one. He is hopeful to return to his part time job at Tops, which he loves and must continue Pulmonary Rehab. Both of these are crucial to his physical and mental health as we navigate this. So now, we wait. We wait for the portable mess to be figured out sooner than later. We wait for the next round of appointments on the Kidney mass workup and we wait to hear on from the transplant team. We will be planning a fundraser as well, so if you have any ideas or thoughts you like to share or if you are interested in helping, feel free to reach out. Thank you as always for your continued thoughts, prayers and donations.🖤,All of us
John and Diann will be traveling home tomorrow from Pittsburgh. His evaluation was completed there. We will know before the end of February on their decision of eligibility. We are in contact with Cleveland as well, whether we are added additionally to their transplant wait list or if he needs a second opinion/evaluation, we don't know yet but are preparing for both if necessary. Today we also learned there is a mass on John's kidney. This needs to be evaluated and pursued first now and appointments have been made to do so. Continued prayers and well wishes are welcome always. 💙
February 7, 2025John is currently in Pittsburgh at UPMC Presbyterian Hospital with Diann undergoing an extensive evaluation to determine his eligibility for a double lung transplant.If you would like to learn more about this diagnosis I have listed a few links below for more in depth information on IPF, Idiopathic Pulmonary Fibrosis.https://www.nhlbi.nih.gov/health/idiopathic-pulmonary-fibrosishttps://www.lung.org/lung-health-diseases/lung-disease-lookup/idiopathic-pulmonary-fibrosishttps://my.clevelandclinic.org/health/diseases/10959-pulmonary-fibrosis
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Praying!
Sarah Bless
<3
Joseph LaMacchia
Sending my love and support to Dad.
Wishing him strength, healing, and a successful transplant. Keeping the whole family in my thoughts during this time. <3
Elizabeth Parker
Make checks payable to:
Help Hope Live
Note in memo:
In honor of Mr. John Jaeger
Mail to:
Help Hope Live
2 Radnor Corporate Center
Suite 100
100 Matsonford Road
Radnor, PA 19087
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