September 29, 2022

helphopelive.org

January 30, 2019

After 4 years, including 2 open heart surgeries, I have decided to leave Temple University Hospital Advanced Heart and Transplant center and change to Thomas Jefferson's Transplant Center.

It was not an easy decision, especially since I credit Temple for keeping me alive. However, 4 out of 5 of my doctors have moved on and I thought it was time to make a change as well. I had the opportunity to follow one of my doctors and I started the process earlier this month.

I am grateful for all that Temple did for me and I am looking forward to moving forward in my transplant journey with Jefferson.

January 15, 2019

Here is a video by a wonderful and generous gentleman who is looking to help me with raising money to help with my medical expenses.

October 21, 2018

Linda J.

“I started my yoga practice 6 months after having a heart transplant. With my doctors clearance, my friend Bobbi Anne Thomas (another yogi) signed me up and purchased me a mat!

It was recommended that I try yoga prior to my transplant, but I was living on a life support device (Lvad) and I was concerned about protecting my driveline and being 10 lbs heavier on my left side. I wish I understood the adaptive class during that time.

I am grateful for joining yoga home and for the adaptive class. I have limitations with physical activity and a ton of scar tissue that prevents me from practicing some poses. Kerri has been a God send, and the prop fairy, for providing me with alternative ways for poses that I can actually do! I can take what I learn and apply in the other classes I take- gentle and yin.

I have been a part of the yoga home community for around a 1.5 years now. There is a feeling of warmth and acceptance as soon as you walk through the door. Every instructor has been understanding and helpful with my limitations. I have made a great group of new friends that add to the support and community feeling.

I am glad I took the opportunity to try something new and grateful for the gentle nudges by friends to try yoga. “

October 15, 2018

I wrote a piece for World Health Day

helphopelive.org

October 15, 2018

I celebrated my 2 year heartaversity on 9/22/18. I received a shout out from my friend, Jim. He is The Transplant Helper and is an excellent resource for any transplant candidates, recipients and those who love us!

April 4, 2018

This piece l, about me, was written by a former student.

www.womanlymag.com

January 31, 2018

I was recently asked if I would be willing to share my transplant evaluation process for a blog with a company attempting to create 3D printed hearts for transplant.

This is what I shared:

biolife4d.com

January 23, 2018

January 22, 2015 was the first time I was admitted to the hospital in advanced heart failure. I was listed for a heart a little over a month later. I had my first open heart surgery 2 weeks after that.

I still have not wrapped my head around how quickly my health declined and the decisions and sacrifices made to keep me alive. The past 3 years have been quite a blur.

My medical team informed me that I cannot work for the next 6 months. At that time, we will revisit how I am feeling and my see if my lab results have improved. I have been instructed to self care and I am enjoying taking care of myself.

October 2, 2017

3rd Annual Beef & Beer photos! patrickliamphoto.smugmug.com

August 27, 2017

Good morning!

Last week I returned to work and celebrated my 11th month post transplant with my work friends.

I would be lying if I said my first week back was easy. Exhaustion was my biggest enemy. Classes start tomorrow and teaching all day will come with new challenges. My priority is to stay healthy and will need the support of my colleagues and students to make that happen.

Thank you for your continued support!

June 27, 2017

I am off of prednisone!! Happy 9 month anniversary to me! I am continuing my recovery and am planning on returning to work, full time, for the upcoming school year.

I am working on increasing my endurance and building my strength. I go to yoga and the gym 5 days a week.

April 13, 2017

I have a Blog! kindergarteneasyastoryoftwohearts.wordpress.com

December 1, 2016

More good news - I am reducing my prednisone to 17.5 mgs a day!

I am happy to report I keep heading in the right direction!

December 1, 2016

Nov 30, 2016

Good morning! I am continuing to improve each week and my medical team couldn't be happier with my progress!

I started cardiac rehab on Monday and I will be going twice a week until I graduate to 3 x's weekly. I am their 1st transplant patient and they will be going slow with me, their words. I am about 30 years younger than the other patients who are there so it may be really slow. I am trusting the process and that has worked for me so far.

I had a good report from Temple yesterday and I am waiting on my test results. I will update on this post when I receive them. I still have limitations on becoming fully independent but Dr Dries and I set a goal for me to be home by Christmas. I have started to cook a little with the help of my parents. I am allowed to be alone for a few hours and I have been cleared to eat at a restaurant during off, non crowded times. My food restrictions still apply and I will need to remember them when I go out - no ice, no raw food, nothing from a soda fountain are a few off the top of my head. I am not cleared to ride in the front seat of a car or drive but things will change by my next appointment on 12/13.

Thank you:

Elizabeth Beschen Liddell, Valerie Keppley-Hood, Joe Pasquarello and Frannie Smith for dropping off delicious food!

Kelly Gardner, Thomas P Kiker, Joe Pasq, Frannie Smith, Lawren White, Ellen Jara Tizio and Maggie Jara Heyer for visiting. I love seeing everyone!

Erika Wuchina Jara for spending a quiet and sleepy Thanksgiving with me.

And everyone else who reached out to check in on me, thank you!

Have a great day! ❤️

December 1, 2016

Nov 30, 2016

UPDATE: 0 rejection!!

December 1, 2016

Nov 17, 2016

I have the official report - 0 rejection!! It feels so good to be a zero! My white blood count has decreased to a 13 and I have been discharged from home PT and will be starting cardio rehab.

December 1, 2016

Nov 16, 2016

I have some good news and bad news to share. Thomas P Kiker suggested I start with the bad news. I will not be able to attend the Adobe Dine and Donate. Cold and flu season combined with only being 2 months out (rule of thumb is 3 months) we thought it would be best to stay home.

And the good news!! The right side of my heart woke up! She took some time but I think she decided to stay. Hopefully I have 0 rejection this time but will find out for sure when I get my results.

Hopefully you can make the Dine & Donate Thursday evening. Ton of great people will be there!

December 1, 2016

Oct 29, 2016

Happy Saturday! I hope everyone is fantastic.

I am continuing to improve each day and am looking forward to getting stronger. PT started this week and I wasn't approved to walk outside but I am tasked with a 2 minute, timed walk twice a day. Looking forward to the day I can say "kindergarten easy" like Maggie's son said to me when I first walked 7 minutes!!

I was really tired this week and I am thinking it is connected to my hospital stay. I referred to myself as a baby - I would eat and sleep, repeat.

The new generic prograf is working and I am pleased that is settled. I hit a hiccup with my pain medication- doctor wrote for a 120 pills and insurance only approved 23. Odd, random number. I decided to skip a pain med yesterday to try to spread out but decided to no longer play a hero. I stayed on top today, spoke to my coordinator earlier and am confident I will not run out of meds.

When I go outside, I need to wear a SPF of 30 to 50 on any exposed skin, sunglasses to protect my retinas (anyone know of any cool retina protection sunglasses?) and a hat.

I have a right heart cath/biopsy and clinic appointment this Tuesday. I hope the rest of my staples and stitches are removed.

As always, I thank you for taking the time for reaching out and sending prayers, good juju, messages and texts - I appreciate it!

Thank you to my babysitters this week Kelly Gardner, Valerie Keppley-Hood and Maggie Jara Heyer. Mag also helped with washing my hair and helping my mom with laundry and food shopping.

Thanks to those who dropped off meals - Marlyn Cascarina the meatballs and pork were top notch. Zuki McLaughlin the ginger chicken was delicious. I am not sure if you knew, but I couldn't have ginger while on the vad. Ginger messed around with my Coumadin. So glad to be off the blood thinner! And Frannie Smith. The Linda Rollups with Frannie modifications and the chili and the chocolate cake and bread and corn bread!! A feast! Thank you and live you!!!

I also had a one Karen Lauber Girard pop in last night with some homemade chocolate chip cookies and the pictures from the photo booth. I had a blast looking at them. You guys are great! Gizzy Bowman once again you did a fantastic job and thank you Fred C Bowman Jr for the notes from the benefit. They were nice to read

December 1, 2016

Nov 7, 2016

Happy Monday! I wanted to give a short update on my recovery.

I had my right heart cath and biopsy on 11/1/15. The results showed that I was in 1R rejection and my white blood cells are high. 1R is mild rejection and instead of decreasing my prednisone, I am staying at the same level. Hopefully my procedure on 11/15 will show a 0 and the steroid can be reduced. No fever, etc so the high white count is, as of right now, a mystery.

My PT walking increased to 4 1/2 minutes twice daily. 6 minutes is a marker.

My bone, muscles, nerves, etc are continuing to heal - and pull and all that other stuff that needs to happen as they join back together. Some pain is associated with that, but I consider it a good pain because I know I am healing.

I had a week filled with seeing friends and family. Thank you to those who stopped in, brought food, gifts and hung out for a bit. Seeing you brought me so much joy, and broke my insomnia for now! Kelly Gardner, Eileen Patricia Bruce, Emily Hope, Dale Warman and his lovely wife, Karen Lauber Girard, Kristi Shoemaker, Maggie Jara Heyer and Bobbi Anne Thomas. My friend, Meredith, helped out. And I can't forget Jennifer Ackley Timony and David D. Timony for wearing Team Linda shirts at the heart walk!

Much love to you all!

December 1, 2016

Oct 23. 2016

I am being discharged today!

Thank you for keeping me in your thoughts and prayers - it helped me get over this hump!

December 1, 2016

Oct 21, 2016

Happy Friday!

I am on my final round of the 1000 mg of steroids and will continue with the diuretics to get this extra fluid off.

The steroids are the normal treatment for rejection. They are still investigating the cause of rejection- they have it narrowed down to a bad batch of prograf or, because I am still swollen from surgery, I may not be breaking down correctly. I doubt it is my fault

December 1, 2016

Oct 19, 2016

Linda just received a call from Temple to report to the ER. Her heart is in rejection. Updates to come soon.

In ER until a room opens on the 7th floor

Going to give me high dosage of steroids to reverse rejection - 1000 mgs for 3 days

Looking into changing some meds - pharmaceutical is running a special test to see if my body metabolizes the prograf too quickly

Going to increase diuretics to get extra fluid off (don't expect to sleep tonight)

Had a chest x ray

December 1, 2016

Oct 18, 2016

My ejection fraction is a 75%! Remember, back in February of 2015, I was a 5%? No wonder Palliative Care was in my room making sure I was "comfortable." What a journey!

December 1, 2016

Oct 12, 2016

All the fluid work was to my advantage and my heart numbers looks better! We are switching to an oral diuretic (not lasix) tonight and as long as I can tolerate AND my biopsy comes back negative- I will be heading home tomorrow!

December 1, 2016

Oct 9, 2016

Happy Sunday!

I am 18 days post transplant and feeling better each day. I has a right heart cath on Wednesday and the results showed too much fluid on the right side of my heart. Because of the fluid, it was taking a bit longer for the right side to wake up. The solution was to give me iv lasix twice daily. I was able to remove 20 lbs of fluid in 3 days.

The biopsy results were positive- 1R rejection for cellular (mild, no concerns) and 0 for antibodies. That is really good news!

I had an echo this week and it seems like the ejection fraction of my new heart is in the 70%! My ejection fraction was a 5% 18 months ago. There is a world of difference!

As expected, I am on a number of new, high dose medications and my body is trying to adjust. Yesterday I started to experience terrible pain in my feet. It was awful, the pain surpassed my incision pain by a gazillion. It appears that this is a side effect of the prograf, the anti rejection meds. It causes nerve pain/damage. My feet feel like they are on fire, hurts to put pressure on them, hurts to leave them alone, hurts when they are elevated, hurts when they are down and don't even ask about walking on them. They started a med to help with the nerve pain but that takes about 4 dosages to work. I will receive the 4th one soon and praying for relief.

I should be home this week, if all goes according to plan. They are keeping me until my next biopsy, this coming Wednesday. They will either discharge me after they get my heart numbers/pressures or wait until Thursday for results.

That is pretty much what is going on around here. I am exhausted from writing the update but it was important for me to touch base with everyone.

Thank you for all of your prayers, messages, support, smuggled in edible food (!!) and friendship. I appreciate it all!

December 1, 2016

Oct 3, 2016

Short update - recovery continues to move in the right direction. I completed my physical therapy early and was able to walk the farthest to date and completed 12 steps. I was able to walk back to my room without the walker and without help. I am getting stronger and getting around a bit better.

Still have a right heart cath on Wednesday and there is rumor of discharge later in the week.

Thanks for the visits, messages, snacks, prayers, etc. Everything helps!

December 1, 2016

October 1, 2016

Hello from Temple Hospital, room 732. Recently had pain meds and I wanted to give an update.

The 3rd time was a charm! I received the call at 3pm,while at work, and was wheeled back to surgery 7 pm on Sept 21st. Next time you hear the song, "Do you remember the 21st day of September" you can think of me and my 2nd Birthday.

I basically had two operations- one to remove the vad and the 2nd to put the new heart in. I believe the new heart was in at 2 am and surgery was wrapping up by 5 am.

I spent the next 2 days with breathing tubes in and I hate them. My throat is still sore from them but is getting better. Hopefully it will return to normal early next week.

What am I doing - I am staying on top of my pain management. I go a half hour past due and I am in a bad way for a few hours. My vitals are taken every 2 hours so I sleep when I can. It is important for me to get protein in but food/ hospital food isn't the most appealing. I do get boost drinks twice a day and they help. I do physical therapy daily, walking with a walker and doing some steps. I don't go far but I feel like I competed in a marathon after.

Last night I saw my pulse in my wrist for the first time since a vad. Today, my friend Emily Webb felt my new heart beat for the first time.

The hospital bed is useless, easier and less painful to sleep in a chair.

I have a biopsy scheduled for early next week and we should know how the new heart is doing on the inside.

Thank you for everyone who has stopped by, texted, messaged- I appreciate you thinking of me. I am trying to get back to everyone throughout the day.

December 2014 will mark 2 years since my health crisis started and I am grateful and blessed to be on this part of my journey.

Will update when I can xoxo

December 1, 2016

Sept 23, 2016

Pictures from the benefit

patrickliamphoto.smugmug.com

December 1, 2016

Sept 23, 2016

Linda Update:

"She is coming along. She is very tired and in pain. They just took out the breathing tube and her vitals look good. She is responding by squeezing Maggie's hand." Maggie also says thank you for the prayers and to keep them coming. They are swamped between getting ready for the benefit and caring for Linda, so she asked me to go ahead and post this update. Thank you all for your love and support.

December 1, 2016

Sept 21, 2016

❤️It's a go. In 8-15 hours our girl Linda will have her new heart. Please please please pray. This girl still has so much strength and beauty to bring to this world. Thank you❤️❤️

Bobbi Anne

December 1, 2016

Sept 21, 2016

I received the call at 3 pm. I went back for surgery at 6:45 pm and finished around 5 am on the 22nd.

My 2nd birthday is Sept. 22!

November 17, 2016

I have the official report - 0 rejection!! It feels so good to be a zero! My white blood count has decreased to a 13 and I have been discharged from home PT and will be starting cardio rehab.

September 27, 2016

I received the call and was transplanted Wednesday night/Thursday morning. What a great feeling!!

Thank you for your support.

September 23, 2016

GOOD NEWS UPDATE!

Linda received the miracle of the Gift of Life on September 22, 2016.

August 18, 2016

I recently increased my goal amount by $25K because the first year cost of transplant medications, without insurance has increased to $7K a month (up from the 5K when I was first listed).

July 13, 2016

The summer is not kind to those in heart failure. Stay cool!

What does not kill me makes me stronger.

July 4, 2016

I had an updated right heart cath last Tuesday, June 28th. I am happy to report that my numbers are good!

School is off now and I am doing my best to relax and rest this summer.

May 7, 2016

Wednesday and Thursday was filled with some ups and downs. I received "the call" and was informed that I was the back up. The heart was high risk, the donor used drugs, which lead to his or her death.

I got to Temple and was told that surgery would be at 330 am. The nurses were wonderful, very excited for me. At 325, we were informed that the surgery was pushed to 6am. About 9am, I was informed that the person ahead of me accepted the heart.

I believe that it was not my heart and I am in a great place, mentally. I was quite exhausted but getting back to normal today.

Thank you for your support!

March 25, 2016

Recovery with my heart has stopped and I will be moving forward with transplant. We gave it a go and there was hope when my ejection fraction increased to 38%, but she dropped down to a 30.

March 25, 2016

I was honored to participate in this video for Help Hope Live. It will give you an idea of what my daily life is like. It isn't easy but I am blessed to be alive!

January 11, 2016

I received the results from my December tests and it appears as if my heart recovery and not just stopped, but it is on the decline.

My ejection fraction, a 38 in November, has dropped to a 30%. An ef of a 30 means that I can go into cardiac arrest at any moment, shouldn't be working, increased fatigue, etc. My heart, because of the power source, will not stop beating.

Needless to say I am disappointed. I will find out at my next appointment if they will still schedule the ramp study, but it doesn't look good.

Happy New Year to you all xoxo

December 27, 2015

I had my Temple on Tuesday, 12/22. Overall it was a positive appointment. My big test is being rescheduled in January. My main heart doctor, Dr Dries, did not agree with the official reading from my last echo. He believes my ejection fraction is above a 38% but he didn't give me a number.

The best case scenario (for the test) is that my heart will sustain herself at a lower pump speed. If so, they will leave the cath in me and have me stay overnight. That means a swan. They will monitor me for 24 hours at a lower speed and make sure I am not retaining fluid, etc. I hate having the "swan" left in my neck but will tolerate it if it helps to determine if my heart has recovered. Worst case scenario is that my heart can't sustain herself, they remove the wires and I go home and move forward with transplant.

Because the cause of my cardiomyopathy is unknown, the recovery rate is 1%. Unfortunately they can't increase my meds, which could help, because I was unable to tolerate a higher dosage. My blood pressure was bottoming out and I was very dizzy.

Hopefully God will answer all the prayers in January and I will get the news I really want - the possibility of saving my heart.

I also had the opportunity to speak to a perspective vad patient. She does not have support after surgery. They will not put a vad in without that help. It was a reminder how lucky I am to have a strong support system. Between family and friends who are like family, I am blessed!

Have a great day!

December 6, 2015

Here is the clip of my radio segment

Continuing to smile, despite a failing heart — NewsWorks

www.newsworks.org

December 3, 2015

“When you can tell your story and it doesn’t make you cry, you know you have healed.”

I am going to be on WHYY's Patient Files this Friday at 9am and Sunday at 10am. WHYY can be found on 90.9 FM.

November 28, 2015

I received the results from last week's echo. My ejection fraction has not changed since September (still a 38) but I showed improvement in other areas. I am disappointed that my ejection fraction hasn't increased but am happy it didn't decrease. My heart, when I was really sick, resembled a basketball (dilated). It is moving towards a football shape and that is the direction we want to go. I have a test in December that will indicate if my heart is continuing to improve.

Thank you for your continued support!

September 22, 2015

I am speaking Wednesday, Sept 30th at the Manayunk Goes Red. It is a free health empowerment event for women.

Time: 6-8 pm

Location: 1 Rector Street, Philadelphia, PA 19127

Please contact Steve Jara at sjara@primehealthcare.com or

215-487-4551.

#mnykgoesred

September 19, 2015

I am posting pictures from Sept 12th's benefit in my albums. Check them out when you get a chance!

September 19, 2015

After a rough Tuesday - emergency visit to Temple - Friday's appointment was positive. The med changes from Tuesday are working and I am feeling better.

My ejection fraction has increased again, and if it increases by another 12%, I may be able to keep this heart. That is my goal but will get a heart if/when needed.

Thank you for your continued support and prayers!

September 14, 2015

New photos from Beef N Beer on Sept 12: ow.ly

July 31, 2015

I needed a right heart cath, an ECHO and a few other tests yesterday. My day started with a right heart cath. Yesterday was my 6th one and my cath lab friends were happy to see me. I heard the funniest line of the day there, "Oh my goodness, it is Linda Jara, our favorite teacher! I didn't recognize you with your clothes on!" The clothes comment made me laugh.

For the procedure, they place a swan catheter in my neck, using the ports to wire a camera into my heart. They check for fluid, etc. My last round of blood work was misplaced so they were able to get blood during that time. Out. Of. My. Neck. My favorite line of the day was, "and the swan is out" when that test was over. I had that swan in my neck for days too many times. I hated the swan and still do. I had the ECHO after. That test is pretty much painless, except when they press on my incision, etc.

I received my test results today:

I am not pregnant (I am checked before each procedure - they only want "one person on the table, not two")

Blood work (PRA) for transplant is perfect

INR is at a perfect 2.1 (INR is the amount of time it takes my blood to clot)

Cath results showed improvement

And...Ejection Fraction (measured in ECHO) is between a 30 and 35%. My ejection fraction has doubled from my last echo and while that isn't the best number, it beats the 5 (Feb) and 15 (April) I was. It isn't high enough to remove me from the transplant list but I will take it!

July 26, 2015

I was featured in the Times Herald, front page!

www.timesherald.com

July 25, 2015

I had a Temple Vad appointment today. Here is the outcome:

My doctor was able to find my pulse & he was impressed that my fitbit is picking up my heart rate.

Next week, I am scheduled to have a right heart cath & hopefully an echo. I am interested in finding out my current ejection fraction. It was a 5% in February and tripled to 15% by April. My hope is that it has tripled again.

June 30, 2015

A video from the best students and co-workers a gal can ask for!

www.youtube.com

June 30, 2015

June 29th

Improvement continues! It wasn't long ago that I was excited when I was able to walk a full 6 minutes. As of today, I am happy to report that I completed a mile on the elliptical and a hour walk!

June 30, 2015

June 2nd

Morning! Things continue to move in the right direction. I am getting out more now that I am home. I even walked in the rain today - and wasn't zapped by the batteries!

I have taken 2 showers since surgery. It is a process - press & seal, saran wrap prior. I have to change my dressing after. I am getting better at it - shaved 20 mins off my time. Took me an hour the first time around.

I am still praying for total healing & being explanted - who knows, may just happen!

Feel free to ask any questions. I will be happy to answer what I can.

Enjoy the day xoxo

June 30, 2015

May 22nd

Cleared to go home! Haven't slept in my own bed since January 22nd - wrapping up things at Maggie Jara Heyer's today & will be home tomorrow. Grateful for Maggie & Joe Heyer for their hospitality.

June 30, 2015

April 24th

Good report today - ejection fraction is up to a 15%. Still bad but beats the 5%! I am allowed to sit in the front of the car and can stay home alone for a short time.

Today was VIP day at Temple. I shared my experience with cardiologist from local hospitals. They were amazed that I had my surgery 7 weeks ago.

June 30, 2015

April 13th

12 minute walk today - outside. Beautiful out. May sleep the rest of the day but I walked for 12 mins outside!

June 30, 2015

April 9th

Walked 6 minutes (at home) today. It doesn't sound like much but it is exhausting. I am determined to increase that time by Monday. May only be by 30 seconds but an increase is my goal!

June 30, 2015

April 2

I have been out of the hospital for 2 weeks now. I am still recovering at my sister's.

I am doing physical therapy daily & have increased to walk the steps once daily. I am now able to walk the hallway 4 times before I am out of breath.

I am still a month away from taking a shower. The waterless bath is nice, I guess, but I do miss taking a shower & washing my hair. Maggie Jara Heyer has been washing my hair in the sink so I am not going a month without clean hair like I did in the hospital. ‪#‎thankgoodnessitisntjuly‬

I was also lucky enough to have a pedicure by Jackie (she just turned 8) today. Each toe is a different color ☺

I wanted to thank you again for the support, prayers, cards, prayer cards, food, texts, visits. Everything you are doing helps me to remain positive as I wait for the new heart.

June 30, 2015

March 26

I had my 1 week post hospital appointment today. All stitches have been removed! VAD numbers are good & the drive line is healing as expected.

There have been 4 transplants since my discharge so I am moving up on the list. I was 6th at Temple (other hospitals in the region are Jefferson, Penn & Hershey).

I am getting stronger daily. Healing continues & most of my discomfort is around the incision site.

I am getting great care at Maggie's. The food that has been dropped off beats hospital food and it is nice to sleep without being woken up every 2 hours. People have been very helpful and I appreciate the help they are giving Maggie & her family.

Tomorrow I have the visiting nurse and the physical therapist. I am planning on another good report.

xoxo