Hello World!
Well, this will most likely be my last entry. 😞
I’m moving to a different platform! You can continue to follow my journey on Facebook! I’ve created a page titled Jessi’s Journey. I can be more interactive with you guys and I just prefer making short quick update videos over typing a long spiel and having to spellcheck 8 times.
I’m hoping you will follow me there. If not, I bid you a fond farewell!
https://m.facebook.com/Jessis-Journey-367979157125875/ <<< Check it out!
Breathe Easy
Live Life then Give Life, Please be an Organ Donor.
Tuesday, March 26, 2019
Tuesday, February 19, 2019
This is 33
Hello World!
Well this is 33.
And I’m not upset about it. I mean, I wasn’t suppose to live this long. I say it every Birthday because making it 1 more year was my wish for a long time. How crazy is that? Your birthday wish becomes: please let me make it to Easter then July 4th then Halloween then Thanksgiving, hopefully Christmas and if I’m lucky another birthday.
10 years ago. March of 2009 is when everything went downhill so fast. I went from College student living on my own to back home with my parents. Needing 24/7 supplemental oxygen, eating through a tube, using a wheelchair to get around, and in the hospital like clockwork - 2 weeks in, 1 week out. It was hard and scary and frustrating and depressing. I was losing.
I would go on later that year to fall into a coma for about 45 days. I would have to relearn to walk, swallow, laugh, basic motor functions. I would be listed for a double lung transplant and wait 2 years 2 months and 2 days. After transplant I would have heart issues and need my heart stopped - yes, stopped completely, and restarted. I would develop neuropathy in my hands, feet, and back. Skin cancer is a new battlefront. I would have liver issues. Develop Kidney failure. Fall back to an unhealthy weight. Chronic Rejection took hold of my lungs and I had chemo and IVIG. Now both kidney and a second lung transplant are in the future.
All while that is going on, I would watch my Dad be diagnosed with stage 4 terminal cancer. I’d watch him fight every week at chemo for 4 years when the Drs didn’t give him 6 months. I was told he would do his chemo treatment then drive the 2 hours to my hospital where I laid in a coma just to be with me. I watched my childhood house burn to the ground. In that fire we lost 3 family dogs. 1 was my best friend. Tucker had been through everything with me. My dad died a few weeks later. I watched my Mom rebuild her house and life. I tried inter grating myself back into “normal” life after transplant.
Through all of that, all that negative - I managed to graduate college - with a 3.4 GPA - and still party like a rockstar. Move out on my own. Met someone and fell in love - Married him! Expanded my family 10 fold. Bought a house on a quiet piece of land in the country - the dream! Welcomed new dogs into my life - my whole life. Welcomed my nieces and nephews into the world. Climbed mountains - Cadillac twice! Ran my first ever 5k - ok so there was some walking, baby steps. Became an expert on travel from NH to OH. Attended more weddings than I can count! Competed in the Transplant Games of America - Silver in Bocce! Rode a motorcycle for the first time. Ate ramen noodles for the first time - thanks Bri. Ate salt water taffy for the first time - again, thanks Bri. Cut all my hair off - twice! In July it will be 7 years post transplant. I fostered dogs. Helped grow our family business. Discovered my love for mowing the lawn. I laughed. I loved. I cried. I yelled. I lived.
I lived.
Age is all about perspective. To some 33 is old, to others it’s young. But to me it another milestone. I’m proud to grow another year older. I embrace what it has to offer. Birthdays are meant to be celebrated - Big and loud - Every year. You are never guaranteed another one.
Happy Birthday to me! Live your life loud.
-Breathe Easy
10 years ago. March of 2009 is when everything went downhill so fast. I went from College student living on my own to back home with my parents. Needing 24/7 supplemental oxygen, eating through a tube, using a wheelchair to get around, and in the hospital like clockwork - 2 weeks in, 1 week out. It was hard and scary and frustrating and depressing. I was losing.
I would go on later that year to fall into a coma for about 45 days. I would have to relearn to walk, swallow, laugh, basic motor functions. I would be listed for a double lung transplant and wait 2 years 2 months and 2 days. After transplant I would have heart issues and need my heart stopped - yes, stopped completely, and restarted. I would develop neuropathy in my hands, feet, and back. Skin cancer is a new battlefront. I would have liver issues. Develop Kidney failure. Fall back to an unhealthy weight. Chronic Rejection took hold of my lungs and I had chemo and IVIG. Now both kidney and a second lung transplant are in the future.
All while that is going on, I would watch my Dad be diagnosed with stage 4 terminal cancer. I’d watch him fight every week at chemo for 4 years when the Drs didn’t give him 6 months. I was told he would do his chemo treatment then drive the 2 hours to my hospital where I laid in a coma just to be with me. I watched my childhood house burn to the ground. In that fire we lost 3 family dogs. 1 was my best friend. Tucker had been through everything with me. My dad died a few weeks later. I watched my Mom rebuild her house and life. I tried inter grating myself back into “normal” life after transplant.
Through all of that, all that negative - I managed to graduate college - with a 3.4 GPA - and still party like a rockstar. Move out on my own. Met someone and fell in love - Married him! Expanded my family 10 fold. Bought a house on a quiet piece of land in the country - the dream! Welcomed new dogs into my life - my whole life. Welcomed my nieces and nephews into the world. Climbed mountains - Cadillac twice! Ran my first ever 5k - ok so there was some walking, baby steps. Became an expert on travel from NH to OH. Attended more weddings than I can count! Competed in the Transplant Games of America - Silver in Bocce! Rode a motorcycle for the first time. Ate ramen noodles for the first time - thanks Bri. Ate salt water taffy for the first time - again, thanks Bri. Cut all my hair off - twice! In July it will be 7 years post transplant. I fostered dogs. Helped grow our family business. Discovered my love for mowing the lawn. I laughed. I loved. I cried. I yelled. I lived.
I lived.
Age is all about perspective. To some 33 is old, to others it’s young. But to me it another milestone. I’m proud to grow another year older. I embrace what it has to offer. Birthdays are meant to be celebrated - Big and loud - Every year. You are never guaranteed another one.
Happy Birthday to me! Live your life loud.
-Breathe Easy
Wednesday, January 30, 2019
Still Trying Though
Hello World!
Well, well, well... 2019. Not all I had hoped/planned for BUT 1 month in and I’m still trying.
I love the whole New Year New Me mentality. I’m a great procrastinator. I’m a great excuse maker. I love the idea of adulthood means if I don’t want to do it, I don’t have to. Wellll that makes change hard. Extra hard. So deadlines tend to work for me. For the entire month of December I planned and mentally geared myself up for change. I was ready. My health had another idea. So instead of kicking off the new year invigorated and ready to rage... I had pneumonia!
I went through 3 weeks of on and off again fevers. Chills. Sweats. Zero appetite - that 90lbs I worked so hard for disappeared real quick. I was sleeping a lot but not really getting rest. Coughing myself awake every night to the point I was sleeping upright. Not the way I planned to start the new year.
Thankfully after some increased steroids and added antibiotics I’m feeling like myself again. While the majority of the pneumonia is gone, I’m now at risk to get it again this winter so I have to be vigilant as to people I see and things I do. Which, truth be told, I’m not super upset about having to do right now cause it’s winter. It’s cold outside, I don’t want to be out there anyway.
But all things in the health department are moving... mostly forward... which is good. I went and got my first pair of glasses the other day. I only have to wear them at night when I drive. I had my lip biospsied again and it came back positive for squamous cell skin cancer. So I’ll be having that removed in the coming weeks. It’s in such a weird spot, it makes eating a little difficult. I use a lot of straws now. My kidneys are still functioning at subpar, no worse which is a plus. Lately my liver has been acting wonky as well. No answer to why that is besides the usual... medication side effects.
Lungs are stable, stable at 30% of normal so not great by any means... but stable is good. One thing I really want to do for 2019 is get my lung function up. My last Transplant Check up went great. Doctors are really loving that my lung function has stayed stable for almost 2 years now. That’s really good when you fight chronic rejection everyday. We are basically just waiting for that decline to start again and then we will start the process for another lung transplant. But I hate when I hear “that’s your best” or “things aren’t going to get better.” I’m stubborn. I know that. Sometimes that works for me and sometimes that works against me. I hate when someone else tries to tell me what my limits are. So I really, really, REALLY want to work on boosting this lung function to be better. And yes, I know PFTs are just a test and how I feel really matters. But I like numbers, and I want to see it on paper. I’m going to be starting Pulmonary Rehab. I’ve done this before and formal exercise is not my favorite thing to do. The idea is the 8-10 weeks of Pulmonary Rehab will help jump start a workout program I can do at home. It will show me what I’m capable of and how I can do the right exercises at home without overwhelming myself.
The other big health topic on the agenda is still the feeding tube. I have a new insurance company so hopefully that will be coming in the next few months. I have to start the whole process over again but I think this time I’ll have a better result. I’m not looking forward to having the tube but I know it will be more beneficial to have it.
My brain has been in overload since the new year. Other than my physical health I’ve been dealing with depression and anxiety again. That’s always going to be a work in progress. Not letting it control my every day is the biggest thing. I’m looking forward to working on a new CF related event for the fall. I love being part of the Board of Development on the CF Foundation. I’m going on a family vacation in April to Disneyland. I can’t wait to go camping all summer. My marriage is wonderful. My dogs are amazing. I really am enjoying my life right now.
2019 will be a great year. The future is limitless.
Breathe Easy
Well, well, well... 2019. Not all I had hoped/planned for BUT 1 month in and I’m still trying.
I love the whole New Year New Me mentality. I’m a great procrastinator. I’m a great excuse maker. I love the idea of adulthood means if I don’t want to do it, I don’t have to. Wellll that makes change hard. Extra hard. So deadlines tend to work for me. For the entire month of December I planned and mentally geared myself up for change. I was ready. My health had another idea. So instead of kicking off the new year invigorated and ready to rage... I had pneumonia!
I went through 3 weeks of on and off again fevers. Chills. Sweats. Zero appetite - that 90lbs I worked so hard for disappeared real quick. I was sleeping a lot but not really getting rest. Coughing myself awake every night to the point I was sleeping upright. Not the way I planned to start the new year.
Thankfully after some increased steroids and added antibiotics I’m feeling like myself again. While the majority of the pneumonia is gone, I’m now at risk to get it again this winter so I have to be vigilant as to people I see and things I do. Which, truth be told, I’m not super upset about having to do right now cause it’s winter. It’s cold outside, I don’t want to be out there anyway.
But all things in the health department are moving... mostly forward... which is good. I went and got my first pair of glasses the other day. I only have to wear them at night when I drive. I had my lip biospsied again and it came back positive for squamous cell skin cancer. So I’ll be having that removed in the coming weeks. It’s in such a weird spot, it makes eating a little difficult. I use a lot of straws now. My kidneys are still functioning at subpar, no worse which is a plus. Lately my liver has been acting wonky as well. No answer to why that is besides the usual... medication side effects.
Lungs are stable, stable at 30% of normal so not great by any means... but stable is good. One thing I really want to do for 2019 is get my lung function up. My last Transplant Check up went great. Doctors are really loving that my lung function has stayed stable for almost 2 years now. That’s really good when you fight chronic rejection everyday. We are basically just waiting for that decline to start again and then we will start the process for another lung transplant. But I hate when I hear “that’s your best” or “things aren’t going to get better.” I’m stubborn. I know that. Sometimes that works for me and sometimes that works against me. I hate when someone else tries to tell me what my limits are. So I really, really, REALLY want to work on boosting this lung function to be better. And yes, I know PFTs are just a test and how I feel really matters. But I like numbers, and I want to see it on paper. I’m going to be starting Pulmonary Rehab. I’ve done this before and formal exercise is not my favorite thing to do. The idea is the 8-10 weeks of Pulmonary Rehab will help jump start a workout program I can do at home. It will show me what I’m capable of and how I can do the right exercises at home without overwhelming myself.
The other big health topic on the agenda is still the feeding tube. I have a new insurance company so hopefully that will be coming in the next few months. I have to start the whole process over again but I think this time I’ll have a better result. I’m not looking forward to having the tube but I know it will be more beneficial to have it.
My brain has been in overload since the new year. Other than my physical health I’ve been dealing with depression and anxiety again. That’s always going to be a work in progress. Not letting it control my every day is the biggest thing. I’m looking forward to working on a new CF related event for the fall. I love being part of the Board of Development on the CF Foundation. I’m going on a family vacation in April to Disneyland. I can’t wait to go camping all summer. My marriage is wonderful. My dogs are amazing. I really am enjoying my life right now.
2019 will be a great year. The future is limitless.
Breathe Easy
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