June 14, 2019 at 1:03 pm #19664
I recently wrote a column about gaining employment with Pulmonary Fibrosis News and how it is a job that fits my current needs. I held various jobs over the course of my adult life, and my last position as a peer coach in a large urban school district was the most fulfilling of my career. After my lung transplant, I could no longer work in a school and the requirements of my position stated I had to physically be in the building I was assisting. Despite not being in direct contact with students, the potential for infection was exponentially higher if I would remain in the peer coach position due to exposure of various buildings and offices. Due to my health, I was forced to take a disability retirement from a position I was truly happy with.
When I stumbled on the columnist position at Pulmonary Fibrosis News, I felt like I should give it a try. In the dual positions I hold, I am considered a freelance employee who works remotely from home. This job fits my needs right now. I get to advocate for two causes I believe in: pulmonary fibrosis and lung transplantation. All of the occupations I have held in my adult life were considered to be positions where I was able to offer assistance and leadership.
While suffering with the symptoms of IPF and undergoing transplant evaluation I worked, but I needed a powered scooter to perform my job duties. I was not ambulatory except for about 20 feet. Going to work was a difficult process but it helped me feel normal despite my circumstances due to IPF.
Have any members been given accommodations to perform their job requirements?
If you have had a lung transplant, were you able to return to work in the same position?
June 21, 2019 at 9:27 am #20009Coreeta MaysParticipant
In my case, I had been with my company for 15 yrs when we received the news in February 2019 that our location here in California would be closing. I was given the option to accept a relocation package to our Ohio office but due to my medical condition, I declined the offer. Due to my PF being a result of an autoimmune disease, I was being treated with high doses of steroids and immunosuppressive medications in conjunction with my anti fibrotic medication, Ofev. During the course of my treatment, I became an easy target for colds and infections. The environment in which I worked was comprised of about 130 individuals in an enclosed call center setting. The risk of infection became too frequent and with the closing of my office location, I knew it was basically the end of that chapter for me. I recently had a bout with an acute exacerbation which landed me in the hospital for a while. Prior to my hospital stay I was only on supplemental oxygen overnight and with activity. Post hospital stay, I’m currently on 3L of oxygen 24/7. At the moment, I’m basically taking time off to make the necessary health adjustments and map out my next career endeavor. Needless to say it will probably require me the need to work from home.
June 22, 2019 at 7:44 am #20045Charlene MarshallKeymaster
Thanks for sharing your thoughts and replying to this topic thread! I certainly don’t blame you for declining the option of moving your company across states; giving up the medical care you are familiar with for a job that compromises your health is scary, I agree. Kudos to doing what is best for you despite the difficulty of that decision. I vividly remember an acute exacerbation I had in May 2017 and it was so scary, I never want to go through something like that again and sorry you have recently had to deal with this. Wishing you the best with finding a new career endeavor that protects your health; good for you for looking into this. At the end of the day, our health has to be the top priority, although I am so guilty of not doing this. It is tough!
Wishing you the best.
June 25, 2019 at 2:55 pm #20085
Hi Mark ( @mark-koziol )
As an IT professional, I sit on my behind and drink coffee. Sometimes I answer the phone :). I returned to work full time around 20+ weeks post transplant. I was working from home with IPF, worked right up to the Lung Transplant on May 31, 2016, then returned to work sometime in Oct 2016. Working in IT made work from home very easy, and my boss and company were very accommodating. I continue to work full time, traveling as needed. Some days, I get very tired or my stomach hurts and I can laydown for a bit to recover. Oddly enough, I returned to the same position post transplant, but in the 3 years since the surgery, I’ve received 2 promotions. I keep telling them I’m old and broken down, but in IT, you clearly can be old and broken down.
My work made a number of accommodations, mainly working from home, and moving near the transplant hospital.
I used FMLA twice, once right after the transplant, and once about 20 months post transplant to get my meds under control.
- This reply was modified 2 years, 7 months ago by Charlene Marshall. Reason: tagging
July 4, 2019 at 7:46 am #20171
Hello David, thanks for your input. I surely hope you don’t have any more problems with your meds. Congrats on your promotions. This is great to hear. Best wishes, Mark.
June 27, 2019 at 8:32 am #20095
David, pardon my stupidity but what is FMLA? Also, did you have a double transplant or single and what hospital did you have it done?
June 27, 2019 at 9:33 am #20096Cloud MasonParticipant
Hi Mark, ( @mark-koziol )
I was diagnosed with IPF in May 2017. Working at a large university was increasingly difficult at my condition progressed. Like David, I work from home. I’m a Software Developer/Analyst and am blessed with an understanding boss and an employer who encouraged me to apply for a disability accommodation which was granted. I am on 4L of oxygen 24/7, so not having to go an office on campus allows me to run my air purifiers and concentrator without bothering others. Working from home also reduces my risk of infections by avoiding direct and indirect contact with thousands of students.
In April, I had an initial evaluation as a candidate for a lung transplant at Baylor in Dallas. The surgeon prescribed Esbriet and Pulmonary rehab, both of which I started two weeks ago. I am having trouble with some adverse effects of the Esbriet. The most problematic issues are fatigue, dizziness, and brain fog. I need to be able to think clearly to do my job. I need to continue to work for as long as possible and am hoping to get accepted into Baylor’s transplant program. I go back to Dallas in August for the next evaluation phase of the transplant intake program – 5 days of testing, interviews, and orientation. I am very interested to hear any and all stories of lung transplant experiences. One of my big concerns is the use of Prednisone during and after surgery as I have had some adverse effects from low doses of Prednisone in the past (swelling in my lower legs and feet and depression).
I want to thank David, Coreeta, and Charlene along with Mark for sharing your stories.
- This reply was modified 2 years, 6 months ago by Charlene Marshall. Reason: tagging
July 4, 2019 at 7:40 am #20169
Hello Cloud, sorry for the late reply as i just returned from a 3 week vacation last night. Thank you for reading and commenting on the forum topic. In reply to your question, my experience with the lung transplant has been a positive one so far. I feel fortunate to not have faced major complications. I am currently on 5 mg of prednisone and do not suffer from any side effects. After surgery I did have diabetes incurred by prednisone. This is normal and only lasted for 3 months. Best wishes for you. If you have any other questions, please ask. Mark
- This reply was modified 2 years, 6 months ago by Mark Koziol.
June 27, 2019 at 9:57 am #20097
FMLA is the Family and Medical Leave Act, if you qualify, your job is protected for 12 weeks, unpaid, so you have some place to go back to after 12 weeks. During my FMLA, I took ETO (time off) and I have an Illness bank of hours that I could draw a paycheck from. I also have short term disability insurance from work. Combining FMLA, ETO, Illness Bank and Short Term Disability I did not miss a paycheck. It worked very well in my particular situation.
I had my Double Lung Transplant at St Josephs Hospital, Dignity Health in Phoenix, AZ. The program has become very large, and the wait times very short.
- This reply was modified 2 years, 6 months ago by David Ota. Reason: Added additional comment
June 28, 2019 at 8:28 am #20102
David, thanks for the feedback. Our stories are in parallel, save that I am awaiting listing. I work from home on my “brains” so that my work is easy on me. I was diagnosed in 2015, have been on Esbriet since January, 2016 and cleared all transplant testing at MGH in December 2017. I have 6 month evaluations and am still considered too stable to list but given my age (72) they are beginning to feel that I am getting closer. Their assessment is that overall I’m pretty healthy but I have a lousy set of lungs. At my last assessment in May they ordered a stress test which went fine. They will re-evaluate in November. I just insisted that they not let me get too ill to qualify. They assured me they won’t. I will have a family pow wow in August but I think the consensus is a go on transplantation. Not being to be able to do much of anything is no way to live so if the offer comes, I’m in.
June 28, 2019 at 9:18 am #20103
I was diagnosed in 2010, went on OFEV as a drug trail almost immediately, I was ‘too healthy’ for the Esbriet trial. Neither drug was approved in 2010. By Dec of 2015, about 5 1/2 years after diagnoses I was on O2 24/7, my concentrator put out 5l/m and it was not enough. I could not do a 6 min walk test because my sats would drop too fast. I thought I was doing OK, still working, driving, and climbing stairs in the house. When I went in for the Lung Transplant Eval in Feb 2016, the doc was ready to list me that day. I was in shock, I argued with her and my wife that I was too healthy, surely there were sicker people out there. As it turns out, they do not want the sickest patients, their recover is slower and poorer. Go figure…
June 28, 2019 at 10:59 am #20104
Thanks David. May I ask how old you were when you received your new lungs?
June 28, 2019 at 2:11 pm #20107
Ha Ha Ha… I was 55 in 2016. I have noticed the older you are when you have the transplant, the harder the recovery. That’s by watching the half dozen guys that I know personally. We just don’t bounce back from being cut in half :). The scar is pretty gnarly after surgery, but it fades with time. Where is MGH?
June 29, 2019 at 8:24 pm #20130
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