Reclaiming my life after a transplant

Posted by alive @alive, Sep 28 6:28pm

I had my stem cell transplant five years ago and then spent the next two years dealing with various complications. I was finally starting to regain my strength in 2018 and decided to return back to work. By then my job was already gone, and when I spoke with my former manager I realized that coming back to the same organization wasn't going to happen. I spent the next 8 months applying for jobs in my field and interviewing all over the country. I felt like my 2.5 years on disability was a real turn off for a lot of employers. Some even asked me what happened during that time.

I was finally able to get a job in California and left my family in the Midwest to reclaim my career. My youngest son was already in 11th grade by then and was busy in school and at his part-time job, and my husband gave me his blessing to do everything I needed to do to find a job.

We are finally together, in Arizona, where I was able to find my current job and we bought a house here. This whole journey has been tough. I'm still dealing with complications from my transplant and new health issues. I often come home from work very tired and have to go to bed early. My hematologist oncologist is two hours away from where I live, and I have to group my appointments and procedures together on the same day, so that I don't have to ask for many days off. I really don't want my employer to view me like I'm not able to perform as everyone else in my department. My current supervisor doesn't know my health history, and I want to keep my privacy.

What kind of experiences have you had returning to work, managing fatigue etc?

No matter how hard we try, I think we’ll always be defined somewhat by our transplant. It seems like when people beyond our family and close friends find out, we’re treated differently. So I can certainly understand your reluctance to share your medical history with your new employer. But I can imagine it really does present some obstacles when you’re exhausted, having a GvHD flare up, taking meds, finding time for medical visits and such.

My AML-transplant life all started the day after my 65th b-day. So I’ve not had to worry about leading a normal life in a work environment…and then toss in Covid for good measure. I’m pretty much a homebody though I certainly get out in the world. Not living in fear, just educated caution.
For me, since I was retired 15 years before AML hit, I’ve pretty much slowly morphed back into my former existence. My GvHD is calm now, my energy has returned to full. I just took my last (hopefully) Tacrolimus capsule Monday after several months of taper. My transplant doctor feels very optimistic this time that I my new immune system and I have reached a peaceful settlement. LOL. But now it’s new territory because not having the suppressant in my system, GvHD is always lurking in the background.

Anyway, there’s been a recent paradigm shift in my mental thoughts. I no longer feel like a patient. Maybe it happens at the 2 year point? Those first two years were really rough.
It hit me when I went for local blood tests a couple weeks ago, pulling into the parking lot of the cancer center, driving there myself like a normal person. I saw patients with their caregivers walking along with faltering, but determined steps who looked like me 2-ish years ago. Bald, emaciated to almost skeletal, sunken eyes trying to hold light and promise. I was almost late for my appt as it took time for me to get my tears under control. Not sure what happened but the flood gates opened for the first time since this all began. I think it was gratitude and relief and acceptance that I’m truly over the worst of this. It was all very cathartic and I’ve just felt so differently ever since!

So, while I don’t have the same situation of trying to cope in a working environment I’m really empathetic for what you’re having to handle daily. And as a fellow SCT cohort, I’m can’t help but smile thinking about your bravery and accomplishments! You’ve achieved some enormous goals over the past 5 years.
There are always unexpected challenges with a SCT. I still think we’re pretty darned brave and a bit like a Frankenstein baby. We need a sense of humor and a sense of adventure to get through this new life with someone else’s DNA coursing through our bodies.

Hopefully more SCT and other transplant members will write in and share their stories of how they’re back in the workforce with their super powers!

REPLY

I’m very sorry for your ongoing struggles. I’m glad your back with your family at least and have employment. I am a liver transplant recipient. I had to resign my full time position in July 2020, continued part time for a month, then when I got too Ill and then in the hospital for a month recovering from my transplant, I had to quit altogether. I had short term disability for six months and then eventually unemployment…after months of struggle because they informed me I should go on long term disability! But I wasn’t disabled, plus I figured it would take a long time to receive. I’ve got some minimal part time contract work in my field, but jobs that pay enough and don’t expose me too much to Covid are hard to find. Plus, I live in a rural small town area and environmental jobs are hard to find as remote jobs have disappeared.

It’s been 9 months of applying for what few jobs I’ve been qualified for. Since I’m 62 and like you some ongoing health issues it’s been a struggle to find employment. I’m not willing to move. And, I have a lot of skills that could crossover, but when you’ve been in one field for 30 years and unemployed for so long I get few interviews. And, then I get asked why I quit my job…and, like you no one is interested in taking me on.

I also have autoimmune disease caused peripheral neuropathy, which causes extreme fatigue and pain by the late afternoon. So, I front load my part time contracts in the morning and early afternoon. I’m not sure how I will handle a full time job. But, I’m getting economically disparate as unemployment ended abruptly on September 4.

I also have hand tremors, so I do all my typing on an iPad Mini (I have to write a lot for work). I can’t use a regular keyboard. I had an interview the other day for a grant writing position and it’s not remote. When I was asked if I can meet all the requirements of the position I explained my tremors and how I handle it. I have a second interview next week. So, I’m hopeful!

It is an ongoing struggle though just preparing meals, cooking, house cleaning, etc., plus working part time. So, I’m sorry I don’t have much advice for you other than making the best use of the best time of the day for you. For me, that’s morning and early afternoon. I’m good at neatness and picking up, but I don’t always dust and vacuum regularly. I’ve decided the small stuff can wait. I always walk 1-2 miles in the morning as it’s good for my autoimmune disease and neuropathy supposedly, plus it helps me remain positive and gives me some energy. I also have a strict healthy diet. Both of which take time, plus seeing multiple specialists, also typically a 2-3 hour drive away.

I feel with my contract work anyway that my experience and excellent work overcomes any need to be flexible in my schedule to accommodate my health issues. But, again I’m not working full time and I’m well known in my field, so my employers are aware of my issues. Have you considered speaking frankly with your supervisor?

Connect has helped me in terms of learning about supplements and potential treatments that have helped others with my health issues. But, more importantly it’s just comforting to know I’m not alone and can share advice when I can, and give support, understanding, and sympathy, while also receiving the same.

REPLY
@athenalee

I’m very sorry for your ongoing struggles. I’m glad your back with your family at least and have employment. I am a liver transplant recipient. I had to resign my full time position in July 2020, continued part time for a month, then when I got too Ill and then in the hospital for a month recovering from my transplant, I had to quit altogether. I had short term disability for six months and then eventually unemployment…after months of struggle because they informed me I should go on long term disability! But I wasn’t disabled, plus I figured it would take a long time to receive. I’ve got some minimal part time contract work in my field, but jobs that pay enough and don’t expose me too much to Covid are hard to find. Plus, I live in a rural small town area and environmental jobs are hard to find as remote jobs have disappeared.

It’s been 9 months of applying for what few jobs I’ve been qualified for. Since I’m 62 and like you some ongoing health issues it’s been a struggle to find employment. I’m not willing to move. And, I have a lot of skills that could crossover, but when you’ve been in one field for 30 years and unemployed for so long I get few interviews. And, then I get asked why I quit my job…and, like you no one is interested in taking me on.

I also have autoimmune disease caused peripheral neuropathy, which causes extreme fatigue and pain by the late afternoon. So, I front load my part time contracts in the morning and early afternoon. I’m not sure how I will handle a full time job. But, I’m getting economically disparate as unemployment ended abruptly on September 4.

I also have hand tremors, so I do all my typing on an iPad Mini (I have to write a lot for work). I can’t use a regular keyboard. I had an interview the other day for a grant writing position and it’s not remote. When I was asked if I can meet all the requirements of the position I explained my tremors and how I handle it. I have a second interview next week. So, I’m hopeful!

It is an ongoing struggle though just preparing meals, cooking, house cleaning, etc., plus working part time. So, I’m sorry I don’t have much advice for you other than making the best use of the best time of the day for you. For me, that’s morning and early afternoon. I’m good at neatness and picking up, but I don’t always dust and vacuum regularly. I’ve decided the small stuff can wait. I always walk 1-2 miles in the morning as it’s good for my autoimmune disease and neuropathy supposedly, plus it helps me remain positive and gives me some energy. I also have a strict healthy diet. Both of which take time, plus seeing multiple specialists, also typically a 2-3 hour drive away.

I feel with my contract work anyway that my experience and excellent work overcomes any need to be flexible in my schedule to accommodate my health issues. But, again I’m not working full time and I’m well known in my field, so my employers are aware of my issues. Have you considered speaking frankly with your supervisor?

Connect has helped me in terms of learning about supplements and potential treatments that have helped others with my health issues. But, more importantly it’s just comforting to know I’m not alone and can share advice when I can, and give support, understanding, and sympathy, while also receiving the same.

Jump to this post

I can really understand what you are going through with interviewing! When I was looking for my first post transplant jobs, I created a spreadsheet to track how many jobs I applied for and how many interviews I had: 146 job applications and 39 interviews. I qualified for all the jobs I applied for. What kept me going was the thought that eventually I will be the best candidate an employer will have and they would be willing to overlook my job history. I hoped that would happen locally, but I finally had to move to be able to work.

Living in a rural area definitely makes your job search challenging. I hope you will be able to find more remote work. I see some employers being more flexible about allowing employees work remotely since COVID forced so many companies to go fully remote. I have one person on my team who moved back from Arizona back home to Oklahoma when COVID hit. She was able to negotiate with her supervisor and continues working remotely now, even after most of the employees came back to work in person.

As far as speaking to my supervisor about my health issues, I really want to keep my health issues private for now. I try not to schedule too many doctors' appointments and do blood work/MRI's before work or on weekends. It's challenging negotiating with my doctors who often want me to get something done within a week and I just have to delay tests and appointments to group them all on the same day. At this point all my conditions are chronic and have to be managed. I will have to speak to my supervisor if I needed a surgery or be hospitalized for a procedure.

I also try to walk every day 1-2 miles. I do it early in the morning before work, plus my parking spot at work is 1/2 mile away from my office, which forces me to walk another mile on the days I have to come in.

REPLY
@loribmt

No matter how hard we try, I think we’ll always be defined somewhat by our transplant. It seems like when people beyond our family and close friends find out, we’re treated differently. So I can certainly understand your reluctance to share your medical history with your new employer. But I can imagine it really does present some obstacles when you’re exhausted, having a GvHD flare up, taking meds, finding time for medical visits and such.

My AML-transplant life all started the day after my 65th b-day. So I’ve not had to worry about leading a normal life in a work environment…and then toss in Covid for good measure. I’m pretty much a homebody though I certainly get out in the world. Not living in fear, just educated caution.
For me, since I was retired 15 years before AML hit, I’ve pretty much slowly morphed back into my former existence. My GvHD is calm now, my energy has returned to full. I just took my last (hopefully) Tacrolimus capsule Monday after several months of taper. My transplant doctor feels very optimistic this time that I my new immune system and I have reached a peaceful settlement. LOL. But now it’s new territory because not having the suppressant in my system, GvHD is always lurking in the background.

Anyway, there’s been a recent paradigm shift in my mental thoughts. I no longer feel like a patient. Maybe it happens at the 2 year point? Those first two years were really rough.
It hit me when I went for local blood tests a couple weeks ago, pulling into the parking lot of the cancer center, driving there myself like a normal person. I saw patients with their caregivers walking along with faltering, but determined steps who looked like me 2-ish years ago. Bald, emaciated to almost skeletal, sunken eyes trying to hold light and promise. I was almost late for my appt as it took time for me to get my tears under control. Not sure what happened but the flood gates opened for the first time since this all began. I think it was gratitude and relief and acceptance that I’m truly over the worst of this. It was all very cathartic and I’ve just felt so differently ever since!

So, while I don’t have the same situation of trying to cope in a working environment I’m really empathetic for what you’re having to handle daily. And as a fellow SCT cohort, I’m can’t help but smile thinking about your bravery and accomplishments! You’ve achieved some enormous goals over the past 5 years.
There are always unexpected challenges with a SCT. I still think we’re pretty darned brave and a bit like a Frankenstein baby. We need a sense of humor and a sense of adventure to get through this new life with someone else’s DNA coursing through our bodies.

Hopefully more SCT and other transplant members will write in and share their stories of how they’re back in the workforce with their super powers!

Jump to this post

Sorry to hear about your 65th birthday "present". I was diagnosed with AML ten days before my 51st birthday. My doctors had the hospital cafeteria make me a small birthday cake. By then I was ten days into my chemo treatment and my taste buds did not react well to all that sugar. One bite was all I could manage. I did appreciate their thoughtfulness though. My husband stayed with me in the hospital and he liked the cake.

AML and SCT really changed my life. On one hand, there is so much I can no longer do, which is very sad. On the other hand, it freed me to do things I was afraid of doing before AML. I never dreamed of moving and looking for a job outside of the area where I lived. I tried very hard to find a job there, but none of the interviews resulted in job offers. After AML, I started asking myself: "Why not move to a warmer climate if I can find a job there?!" My husband is such a good sport and supports me when I come up with a crazy idea. I think he is just so happy that I survived that he is willing to go along.

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@alive

I can really understand what you are going through with interviewing! When I was looking for my first post transplant jobs, I created a spreadsheet to track how many jobs I applied for and how many interviews I had: 146 job applications and 39 interviews. I qualified for all the jobs I applied for. What kept me going was the thought that eventually I will be the best candidate an employer will have and they would be willing to overlook my job history. I hoped that would happen locally, but I finally had to move to be able to work.

Living in a rural area definitely makes your job search challenging. I hope you will be able to find more remote work. I see some employers being more flexible about allowing employees work remotely since COVID forced so many companies to go fully remote. I have one person on my team who moved back from Arizona back home to Oklahoma when COVID hit. She was able to negotiate with her supervisor and continues working remotely now, even after most of the employees came back to work in person.

As far as speaking to my supervisor about my health issues, I really want to keep my health issues private for now. I try not to schedule too many doctors' appointments and do blood work/MRI's before work or on weekends. It's challenging negotiating with my doctors who often want me to get something done within a week and I just have to delay tests and appointments to group them all on the same day. At this point all my conditions are chronic and have to be managed. I will have to speak to my supervisor if I needed a surgery or be hospitalized for a procedure.

I also try to walk every day 1-2 miles. I do it early in the morning before work, plus my parking spot at work is 1/2 mile away from my office, which forces me to walk another mile on the days I have to come in.

Jump to this post

Wow! 146 applications. Ugh! Ok, I’ll try not to complain anymore…I greatly admire your perseverance, especially with your ongoing health issues. It’s been so hard dealing with both. I’ve been in the same field for 30 years and never had to really search for a job before! And, never out of my field due to professional connections.

I’m sorry you had to move to find your job. I’m just too old to do that anymore. Plus, I love where I live. I do finally have a second interview on a part time position, which they want to make full time. So I’m hopeful.

I completely understand about you wanting to keep your medical issues private. It’s sad in our society that medical situations, age, color, length of time unemployed, etc. all still influence whether you get a job or not or even keep a job once you get it.

I’m glad you’re able to walk, I find it’s good for the body, mind, and outlook. I do Qigong and Tai Chi exercises, have your tried something like that which might help your fatigue, but also your stress? There is a zoom class I take on Sunday mornings. There are a lot of videos and classes online.

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I haven’t tried tai chi or qigong. Walking is the easiest thing for me to do. I swim when the pool is warm enough. I used to go to the gym, but last time I ended up needing PT for my hands – I couldn’t make a fist and writing was very difficult. So, I went back to walking.

I totally understand that you don’t want to move to get a job. Living in a place that you love is very important! I would have had to get a job in retail if I stayed where we lived in the Midwest. I felt like I had good 10 plus years left before retirement. I don’t know if I will stay in Arizona for the rest of my life, but for now it’s a great place for me to work and I love warm winters.

REPLY

With Vermont winters I need something indoors. Last winter I discovered a great Tai Chi/Qigong instructor who does virtual quite well. I also have two flights of steps, so if I can’t walk I do lots of steps!

I discovered Western Massachusetts has many more professional opportunities than Southern VT, so I was offered a grant writer/manager position with a small city about half hour south. It’s only halftime for now, but expected to go full time and it has excellent pay and benefits. Very excited! I’ll do contract work to make up the rest of my needs. Funny, I applied for another job with the regional council of governments down there and was offered an interview as well. Nice to be affirmed that it wasn’t me, just my location! I know you can relate!

S. VT is so focused on tourism, most of the professional employment is in Burlington or Montpelier. It’s sad that similar situations play out around the nation. Retirement won’t happen for me either for at least six or seven years until I pay my mortgage off.

I hope both of our bodies remain healthy into retirement!

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