Well BCBS approved the transplant today and I got the call at exactly 6pm that I was back active on the list. I was not anticipating this call this evening. I last talked to my coordinator last Friday and BCBS wanted updated labs, updated social work note, and a recent pulm note. I got my labs drawn Saturday and faxed them to Wisconsin on Monday. I called today to make sure they got my fax, my coordinator wasn't there so I talked to another who couldn't find the labs. I refaxed them and he said he would watch out for them and contact the social worker.
I anticipated a follow up call from my coordinator after the holiday weekend. Well a little over a hour ago I got a call from a coordinator I have never talked to saying they were putting me on the active list and my phone needed to be on my side 24/7. GULP! This was not my plans for the holiday weekend! A long weekend with a nice sunny forecast meaning a lot more motorcycles out and holiday weekends unfortunately equal increased accident rates! It is my reality that someone has to die for me to live.
Its in Gods hands and His timing is perfect. Please pray for perfectly matched lungs, a successful recovery, and long active life. This is scary!!!!!!!!!!!!!!!
Friday, May 23, 2014
Sunday, April 27, 2014
And there it goes-lung function dropping...
We returned to Madison, Wi this past Monday for a routine follow up. After my local visit with my pulmononolgist in late March where my lung function was 22%, my doc called Wisconsin to alert them and to discuss returning back to the active portion of the transplant list. They called and wanted me sooner than April 21 but due to extenuating circumstances I wasn't able to get there sooner. They asked if I could wait to discuss the transplant list and I felt I could.
Monday's visit included labs, breathing tests, blood gases, 6min oximetry, and clinic visits. My spirometry revealed a lung function of 19%. I didn't walk as far during my 6minute walk but still walked further than most with severe lung disease.
During our clinic visits, we met with a pharmacist who reviewed all the many post-transplant meds I would be on and the enormous side effects that come along with the meds. Its mind boggling. The transplant coordinator came in and reviewed the protocol on being on the list and the need to get there in a timely fashion. The transplant doctor came in and after seeing my numbers suggested I go back on the active portion of the list. He stated that overall currently there is a shorter waiting list and a short A+ (my blood type) list, meaning that I may get a call sooner than the average 9-12mos.
He also suggested that I may need to stop working, I see sick patients and being on the list its important to stay as healthy as possible and as strong as possible. That is a hard pill to swallow, but something I will contemplate. I'm not looking forward to having the phone on me 24/7 or the tremendous battle before me.
Another glitch is my husband just started a new job last wk and our insurance will be changing to Blue Cross Blue Shield. I need this to be a seamless switch, pls pray that it is. Benefits started on Day 1 which is great but not sure how BCBS is to deal with. I've had Priority Health for the past 16yrs and I know what to expect-I'm sure they are breathing a huge sigh of relief seeing me go.
Pray for perfectly matched lungs, seamless insurance switch, and the wait to be short.
So for now I must:
Monday's visit included labs, breathing tests, blood gases, 6min oximetry, and clinic visits. My spirometry revealed a lung function of 19%. I didn't walk as far during my 6minute walk but still walked further than most with severe lung disease.
During our clinic visits, we met with a pharmacist who reviewed all the many post-transplant meds I would be on and the enormous side effects that come along with the meds. Its mind boggling. The transplant coordinator came in and reviewed the protocol on being on the list and the need to get there in a timely fashion. The transplant doctor came in and after seeing my numbers suggested I go back on the active portion of the list. He stated that overall currently there is a shorter waiting list and a short A+ (my blood type) list, meaning that I may get a call sooner than the average 9-12mos.
He also suggested that I may need to stop working, I see sick patients and being on the list its important to stay as healthy as possible and as strong as possible. That is a hard pill to swallow, but something I will contemplate. I'm not looking forward to having the phone on me 24/7 or the tremendous battle before me.
Another glitch is my husband just started a new job last wk and our insurance will be changing to Blue Cross Blue Shield. I need this to be a seamless switch, pls pray that it is. Benefits started on Day 1 which is great but not sure how BCBS is to deal with. I've had Priority Health for the past 16yrs and I know what to expect-I'm sure they are breathing a huge sigh of relief seeing me go.
Pray for perfectly matched lungs, seamless insurance switch, and the wait to be short.
So for now I must:
Thursday, April 3, 2014
April is National Donate Life Month! And other thoughts
Sign up! Sign up! Sign up! www.giftoflifemichigan.org for Michigan residents or www.organdonor.gov for anywhere else. I never got a comment for why one decides not to become an organ donor in a previous post. Your body won't be hacked up, you will still be able to have a viewing, medical personnel will do everything to save you, but the best part ---you will live on in someone else that would ultimately DIE without that gift of life.
If you asked me 5yrs ago if I ever thought in my wildest dreams that I would be where I am today healthwise, you would have heard a resounding NO. Heck, I'd been through enough as a child, now I need a transplant ?!?!?! It is very surreal at times and with my recent lung function dropping again to 22% a few wks ago the reality of a transplant is creeping closer and closer. This year could be a game changer for me--SCARY!!!!! You can't really understand until it affects you personally-there is so much involved. Do I want to be here? NO! Do I want to stop and catch my breath if I walk too fast? NO! Do I want to die at 38? NO! Do I want to lock myself in a closet and scream and break things and hit someone in the face as hard as I can? SOMETIMES! Do I want to curl up in a ball and stay in my bed somedays? YES!
Ah, the unending roller coaster of emotions one experiences when life decides to pull the rug out from under you. Life goes on with or without you, so I will fight to keep up with the demands of life.
I go to Wisconsin in a few wks, they want to see me before putting me back on the active part of the list. I'm pretty sure they want to make sure I can still travel there and don't look like death warmed over with this barely working lungs. The time has come, the time has come, it is done.
Here's a great song that sums up how I'm feeling-the first line says it all.
Sunday, March 9, 2014
1 yr ago
A little over one year ago, I created this blog and started to make my story public. Wowee, that's scary! For those who know me personally, know I'm insanely private and making myself transparent is not easy for me. This disease is rare and I needed answers. There isn't many answers out there, so I figured let me put my story out there and hopefully I can help others who are struggling for answers.
In this past year, I have approximately 10,400 blog views including views from all over the world! Crazy!
Almost exactly one year ago, I also finally joined the facebook world --mainly to more easily connect with people, share my story, and spread awareness about organ donation. I created a tshirt I'm really proud of and have sold ~450 here in the US and my good pal Kirstie (whom I met thru this blog) and her family in Canada sold many shirts to support organ donation and her son Bryan battling this same nasty disease. Here is the cool design:
I even got my design copyrighted!! Thank you to all who have bought a shirt and still wear them faithfully. It means a lot!
There is more to my story to tell--some of it I'm not ready to blog about, some of it is unknown, but most is laid out in these posts from the past year. THANK YOU to those who faithfully read this. I've met some really great people due to this blog, thank you to those who leave comments and for praying. The support means so much..
In this past year, I have approximately 10,400 blog views including views from all over the world! Crazy!
Almost exactly one year ago, I also finally joined the facebook world --mainly to more easily connect with people, share my story, and spread awareness about organ donation. I created a tshirt I'm really proud of and have sold ~450 here in the US and my good pal Kirstie (whom I met thru this blog) and her family in Canada sold many shirts to support organ donation and her son Bryan battling this same nasty disease. Here is the cool design:
I even got my design copyrighted!! Thank you to all who have bought a shirt and still wear them faithfully. It means a lot!
There is more to my story to tell--some of it I'm not ready to blog about, some of it is unknown, but most is laid out in these posts from the past year. THANK YOU to those who faithfully read this. I've met some really great people due to this blog, thank you to those who leave comments and for praying. The support means so much..
Thursday, February 20, 2014
The weather...ugh! Not a catchy title? There's more in there
I try and post regularly but also don't want to post just to post. So shall I discuss this CRAZY Michigan weather!? I'm tired of hearing the complaints but weather is neutral subject so this is some of the small talk that goes on at the beginning of a patient encounter.
Work had been eerily slow, which is ok for me as I was looking on taking some time off to recharge.
The cold air does affect my lungs and make things a bit more difficult.
I also has a sleep study a few wks back, I won't be sharing that pic of myself looking like a lobotomy was about to occur. The study said I had very mild partial airway collapse during REM sleep only (normal is 0-5- mine was 6). Well I'm in REM sleep at 2 different times for short periods- I'm in it 3/4 less than the norm. So no clear answers on how to get me more REM -the good Dr Baer has to get a hold of the guy. I spend most of my sleep in stage 2which one of the lighter stages.
To be continued.
Work had been eerily slow, which is ok for me as I was looking on taking some time off to recharge.
The cold air does affect my lungs and make things a bit more difficult.
I also has a sleep study a few wks back, I won't be sharing that pic of myself looking like a lobotomy was about to occur. The study said I had very mild partial airway collapse during REM sleep only (normal is 0-5- mine was 6). Well I'm in REM sleep at 2 different times for short periods- I'm in it 3/4 less than the norm. So no clear answers on how to get me more REM -the good Dr Baer has to get a hold of the guy. I spend most of my sleep in stage 2which one of the lighter stages.
To be continued.
Sunday, January 26, 2014
Today I met...
I finally met a living breathing person who had a double lung transplant! He attends my church and had his transplant at U of W! This person also is a patient at the office I work at. How about that for a coincidence? Since I don't believe in coincidences I know it is God.
After doing so much research on lung transplants and survival rates, it is easy to feel dismal about my future. I've wanted to meet an actual person who had a lung transplant for a long time. Spectrum was suppose to arrange this but never did-they have a long way to go before they are a well oiled machine like Wisconsin. But I won't get into that now.
My pastor arranged for Randy to reach out to me and after some emails we arranged a face to face meeting today after service.
Randy was a pleasant gentleman and you would never know he had a lung transplant (kinda how I don't appear as ill as I am), how reassuring! I got to hear his story, he is still working full time and is 8 yrs out from transplant. He had pulmonary fibrosis that eventually led to his transplant. He was only give 1 wk to live before his transplant! He has had some setbacks in the last 8yrs but ultimately he says he feels great and encourages staying active.
I have so many scary statistics and facts about lung transplantation that it has been discouraging to say the least. I now have a positive statistic in my mind who happens to attend my church.
God works in mysterious ways.
After doing so much research on lung transplants and survival rates, it is easy to feel dismal about my future. I've wanted to meet an actual person who had a lung transplant for a long time. Spectrum was suppose to arrange this but never did-they have a long way to go before they are a well oiled machine like Wisconsin. But I won't get into that now.
My pastor arranged for Randy to reach out to me and after some emails we arranged a face to face meeting today after service.
Randy was a pleasant gentleman and you would never know he had a lung transplant (kinda how I don't appear as ill as I am), how reassuring! I got to hear his story, he is still working full time and is 8 yrs out from transplant. He had pulmonary fibrosis that eventually led to his transplant. He was only give 1 wk to live before his transplant! He has had some setbacks in the last 8yrs but ultimately he says he feels great and encourages staying active.
I have so many scary statistics and facts about lung transplantation that it has been discouraging to say the least. I now have a positive statistic in my mind who happens to attend my church.
God works in mysterious ways.
Sunday, January 12, 2014
A new year...
Happy 2014! Time continues to move forward whether we're ready for it to or not. Sometimes don't you wish there was a stop button?
I can't say I will miss 2013 --there was a lot of anxiety and unknowns that I won't miss. My son started kindergarten and loves it so that is a huge positive. I can't believe he's reading! When I went to kindergarten for a 1/2 day (he goes all day), I remember letter people and playing dress up--times have DEFINITELY changed.
Some goals for 2014: 1. I want to continue to promote organ donation and hope to get in some local libraries and spread the word about organ donation. There are many myths out there that need to be dispelled. To anyone reading this, what are some things about organ donation you don't understand or have questions about?
2. I want to try and up my exercise regimen and walk or ride a bike 4-5x/week. When you are unable to do something to full capacity it is discouraging and I hate how short of breath I become in a short time. I have to stay strong, I will continue pilates/body barre twice a week. I hope that some of my mat neighbors in those classes don't notice my sweat and increased breaths. But then again, oh well if they do-they don't know my story.
3. We're going to get a dog --mostly for my son. He wants a brother and I can't give that to him. This is heart breaking and a whole blog on its own. I haven't been able to write it because its too painful. We have to get a hypoallergenic dog so we've decided on a schnoodle (schnauzer/poodle mix). Eric will have a at home best friend. I also have a thing about hair so this is big for me and nice to know that this breed doesn't shed much.
4. Stay healthy as possible, my most recent lung function testing done last Thursday revealed my lung function at 26%, it was 28%. We'll see what this year holds for my lungs.
Just gotta keep on keeping on.
I can't say I will miss 2013 --there was a lot of anxiety and unknowns that I won't miss. My son started kindergarten and loves it so that is a huge positive. I can't believe he's reading! When I went to kindergarten for a 1/2 day (he goes all day), I remember letter people and playing dress up--times have DEFINITELY changed.
Some goals for 2014: 1. I want to continue to promote organ donation and hope to get in some local libraries and spread the word about organ donation. There are many myths out there that need to be dispelled. To anyone reading this, what are some things about organ donation you don't understand or have questions about?
2. I want to try and up my exercise regimen and walk or ride a bike 4-5x/week. When you are unable to do something to full capacity it is discouraging and I hate how short of breath I become in a short time. I have to stay strong, I will continue pilates/body barre twice a week. I hope that some of my mat neighbors in those classes don't notice my sweat and increased breaths. But then again, oh well if they do-they don't know my story.
3. We're going to get a dog --mostly for my son. He wants a brother and I can't give that to him. This is heart breaking and a whole blog on its own. I haven't been able to write it because its too painful. We have to get a hypoallergenic dog so we've decided on a schnoodle (schnauzer/poodle mix). Eric will have a at home best friend. I also have a thing about hair so this is big for me and nice to know that this breed doesn't shed much.
4. Stay healthy as possible, my most recent lung function testing done last Thursday revealed my lung function at 26%, it was 28%. We'll see what this year holds for my lungs.
Just gotta keep on keeping on.
Subscribe to:
Posts (Atom)