Nicole Needed New Lungs – Now needs a Kidney Evaluation Test

January 10, 2018

I'm at a little over 13 months now. Had a few scares & blips my first year but not bad all considering. Having a few TSC related issues pop up, will keep abreast if they turn into anything but hoping not. It was hard for me to write last month because although I celebrated my anniversary, my dad who has been there for everything in my life died on Christmas Eve from pancreatic cancer. He started home hospice shortly after my anniversary. While his death was hard emotionally (I was not medically cleared to fly to be with him) and physically (I was still recovering from losing some function prior and getting back on my feet after anemia) I was very happy he saw me through my first year and was able to be with me when I had my transplant. My support system continues to be strong, so while I will always miss him. I'm still not alone. I finally qualified for Medicare, so that means no more COBRA payments. Things are ok for now, but if drug costs become unmanageable or something unforseen happens I am at least strong enough that I can manage a fundraiser now if need be. That said donations are welcome at any time in any amount. Thank you everyone for your support in getting me through this far. Your help has sustained me for my medical needs and care for about 2 years now which has alleviated a lot of stress and worry.

May 1, 2017

5 months out. Insurance paid for the year. Had a bit of rejection about a month or two ago, but it resolved on its own. Honestly, 40 is a number that I had a hard time seeing in my future, but I will now later this month thanks to friends, family, & my donor.

March 5, 2017

I graduated rehab a few weeks ago & am back home. The funds raised have come in handy as I've had some medical bills starting to roll in. It's especially helpful not having to worry about keeping up with my insurance premiums. Thanks everyone for all the support.

December 24, 2016

Thanks for everyone's support. I completed my first week of rehab and am working on getting my insurance payments out of the way. I appreciate all the help I'm getting. My insurance changed carriers (now Blue Cross and I'm at 2K deductible) so these donations will really help.

December 14, 2016

Nicole has been released from the hospital as of last night ( Dec 13th). She has been recovering very well from her transplant, so far. Her entire hospital stay was 11 days! Her pulmonary rehab will begin tomorrow and continue for 6-8 weeks. She will continue to live in Philadelphia, close to the hospital, until her rehab program has been completed.

December 8, 2016

Nicole had her transplant!!!! On Thursday Dec. 1 we got the call for lungs around 10pm. We rushed down to Philadelphia and at 8:45am on Dec. 2nd, her surgery began. The surgery went beautifully. No complications. She has been speeding through her recovery. She came off the ventilator 24 hours after surgery. She was transferred out of ICU yesterday and is still recovering in the hospital. As of today she is off oxygen, breathing room air. She has one chest tube (down from the orginal 6) remaining. She is eating well and had her feeding tube removed today. She's also been able to sit up in a chair for a good period of time and had a walk this morning.

-Elizabeth C

November 11, 2016

I have for a time deactivated my social media accounts on Twitter & Facebook. I have personal reasons for this. Perhaps I will be back or maybe not. I will see in a few weeks. You can reach me here on this page or those who care know to reach me at my email address. Thank you very much. You may also still continue to follow my blog at https://ilivebreathe.com/.

November 10, 2016

I cancelled my appointment with Hopkins due to illness. When I talked with them about rebooking, I was told I'd need a doctor's note. I'm done with the red tape & there are other factors that would make this undeniably harder. So I won't be dual listing as of now. I can only hope that my transplant happens before the end of the year, because I won't know what will happen next year. I have pre-existing conditions & can't work, but I may be forced even in poor health to just to even have any coverage, especially if they make cuts to Social Security & Medicaid/Medicare. This isn't about politics either, it's a legitimate worry. I stopped working only because my doctors told me I had to. I'm frustrated, yet trying to remain optimistic. Yet, I am mostly tired. But I have come too far to turn back.

September 5, 2016

If you've been following my blog, you can read up on what happened with the U of MD. Even though I had some friends try & help me & they (U of MD) were willing to see me, because of the amount of oxygen I'd need to coordinate for the trip, it's pretty much undoable to do a consult there, since they don't provide oxygen at the visits like Penn does. You can read more about that here: https://ilivebreathe.com/2016/09/03/learning-to-live-with-frustration/

But, I just keep plugging away. So far no lightening striking twice, but still a day left in the holiday. I really only hope this transplant comes soon. I have another visit at my center on September 8.

August 16, 2016

I was very lucky to be reinstated with my past oxygen supplier when the one I had been using had cut off my service and deliveries without notice. Unfortunately, I had to find a second concentrator since my supplier will only rent me one. I did but thanks to having my insurance payments come out of this fund, I was able to afford a reliable but used unit that will be coming to me soon. Same model and style as the one I'm renting now. This will allow more flexibility especially for weekend calls and allow me to have a unit for the lower level of my house. For those who haven't been keeping up with my blog, I'm still waiting. Had that one dry run over the holiday but no calls yet. I've opened up a discussion with my transplant doc about dual listing (being listed with more than one transplant program or hospital in hopes of getting transplanted sooner) just in case and have some people i know getting some information for me on U of Maryland's lung transplant program criteria. If I don't qualify then that will be it, but I certainly think trying another region with another wait time and dual listing there is a good move it's possible for me. Certainly doesn't hurt to find out. I'm also very lucky to have a pulmonary rehab program next door to my doctor's office. Even though it's only two days a week I'm active enough I've been doing walking or other things a few days a week that I'm still meeting my requirements, but without the rehab things would be much more difficult. My doctor was also concerned enough to start me back on a reduced dose of rapamune until I'm transplanted. Even if its a risk I'm relieved because the decline is much more manageable and I've stopped losing so much function per visit in comparison to when I was off the drug.

July 5, 2016

I had my first dry run on Saturday. 4 months in & I'm getting calls so I find that really encouraging. It was a long day & one that didn't pan out unfortunately because one of the donor lungs had pneumonia, but my team did their best to find me something that might have worked & for that alone, I'm truly grateful. I've had a few times where I've been in & out of hospitals in June because of wacky oxygen levels but am still holding my own in spite of it.

June 19, 2016

I am down at the Hospital of the University of Pennsylvania. I went over to my local ER on Thursday afternoon because my oxygen levels were low just getting water and not doing much of anything. My oxygen demands had also been increasing a lot. They don't know a whole lot yet, but they ruled out blood clots, lung collapses, or something obvious. Hopefully on Monday the breathing tests will figure something out and we can come up with a plan. I have a wonderful support system of friends that are helping me through this, but I may have more expenses to remain in Philadelphia until transplant or also for some additional therapy if my insurance won't cover it. That's why your donations have been and will continue to be so important & appreciated. I'm still not super strong, but the steroids are opening my lungs enough I can do some walking and try to care for myself a little so I'm confident my team can get me through this bump and then help me stay the course to transplant. Thanks for the support & donations.

June 16, 2016

BTW - Thank you for all the donations. It's really appreciated. Because of the money raised I was able to pay off my insurance premiums for the year, also able to pay some oxygen rentals & a few other bills.

June 16, 2016

It's halfway into June. Now 3 months into the wait. I've slowed considerably but still trying to stay active. I seem to go up a liter of oxygen about every 4-6 weeks. Right now I'm on 6 Liters for most things. Even more for exercise. It's frustrating to be here, but hopefully I won't be waiting too much longer & at least the more winded I get, the higher my score goes so I've been closely monitoring my body & reporting any changes to my transplant team. I have another appointment June 30th and my exercise demand continues to go up I might need to look at rehab down there to keep in shape & give me the right amount of oxygen I need to exercise with if none of my current machines/devices can. Right now, we're just saying the course & trying to maintain while I wait.

March 11, 2016

I followed up with my center today. I am on the waiting list as of March 1. So 10 days on & I didn't even know. Funny way to find out but the wait has begun. Now in 6 months (or maybe less or slightly more) I'll have an even better update.

February 29, 2016

Hi, Everyone. I'm very close to listing now. Just one more blood test result & waiting for the Rapamune to clear my system & it will be a done deal. Definitely sometime this March. I can't thank everyone enough for helping me reach my goal & exceed it. I've been using some funds to stay ahead of my insurance premiums & may also need to use some for medical transport possibly, so it's all helping! Once I find out I'm officially starting the wait and in the UNOS Registry computer, I'll post another update. They anticipate a wait of 6 months or possibly less for me. So it's slowly creeping up. Keep up the donations and positive vibes. I appreciate them all!

January 29, 2016

I had to reschedule my most recent transplant appointment due to the blizzard. We received 31 inches of snow, & I know Philadelphia had more. I'll know more about what the next steps are later in February, but for now I am still holding my own. Want to thank everyone again for their donations. I sometimes fall behind in reaching out as timely as I'd like to but I do appreciate them.

January 6, 2016

There were a few friends & extended family that sent me a few donations over the holiday season. I want to thank them for that! The support has been overwhelming. Right now it looks like I will be listing in February & I'm in good shape thanks to everyone's help with managing some of these expenses. It's a huge relief.

December 14, 2015

I know it's been awhile since I updated, but I wanted to thank everyone again for their support. Looks like I'll be listing sometime after the holidays, just not sure exactly when yet. But I'm hanging in there. When I do list, I'm told that it will be around 6 months I'll have to wait, possibly less at the rate that my center is doing transplant. Continued good thoughts, well-wishes & positive energy are welcome. Thanks to everyone who has helped me meet my fundraising goals, it's a pleasant & wonderful surprise to be over the mark!

November 4, 2015

Thanks to everyone. I have exciting news.

The initial goal will be met, just finalizing things for that to happen. From now on, the funding indicator will be shut off.

Also I will be receiving both challenge grants which is incredible.

But people can still give because....

My insurance premiums alone will be close to this goal if it takes me longer to return to work or if I have to continue coverage until moving Medicaid in 2 years. Right now that's close to $600/month alone.

This also does not include deductible expenses, oxygen rentals, or co-insurance & copays until my out of pocket for 2016 is met on that plan (I'm ok for this year). It doubled last year, so I'm expecting that to happen again in 2016. It's still relatively low by most plan standards but still expensive. That will all re-start January 1.

I have no idea yet what my actual expenses will be. But meeting this goal gives me a great start towards these expenses & then also may at least cover my medications. The continued help is appreciated. As I'll need to plan similarly for years to come. Anything you donate is secure & verified & used solely to help with these efforts.

November 2, 2015

Though it has not credited, my benefit yesterday in my hometown raised over $10K, quite possibly more. We will definitely hit that 20, but since this is a long-term fund & will now have my own insurance premium expenses as well as new deductible expenses in January of this year, I am so happy that people continue to try to build a cushion for me.

This also does not account for donations I've received that are yet to come in plus the rounds of Jamberry & Pampered Chef fundraisers as well that have yet to factor in.

Therefore, I am pleased to announce to get a more accurate total, I am for today, boosting the goal to $25K to see how much we get when things wind down for the year. We may do more or may do less, so I can adjust accordingly, but I think that initial 20K is well in hand or will be quite shortly. What a tremendous show of love! Thank you all.

November 1, 2015

So I went out for Brunch at Mitzi's today. Susan and Matt, the owners & friends of mine presented me with the first round of cookie proceeds. The total raised was close to $1300 dollars. Incredible. Additionally, many kind strangers supplemented this with donations & gas/grocery cards. Humbling.

I then came home to Skype into my hometown's benefit, I don't have full totals yet, but there was a silent auction, live auction & pancake feed put together from so many people I know & grew up with. The auction list alone was close to or over 100 items.

Truly, one of the most amazing efforts I've seen in my life. I know we'll be at 10K at minimum by Thanksgiving. Maybe even more. I'm just awestruck.

This does not count other donations I've received since I've been home, either. What a wonderful strong show of support.

October 29, 2015

The day of my accident I received a note & a check from my cousins which until yesterday remained unopened. They own Boss' pizza in Sioux Falls (& have 3 or 4 other locations). It was their 10th anniversary this year so they had a 2 day celebration. They always give a donation to Feeding South Dakota which they did the first day, but then they decided to run their anniversary specials a second day so they could pitch in and help me out. There was a small yet brief spot that ran on the local news just before. I was aware that this was done but didn't know just how much was raised when that note came. I'm humbled to say that spontaneous effort raised an additional $530. Now that I'm home I will mail those proceeds off shortly to boost my fund. I know they don't think it much, but it helps. I know we have some continued creative ideas for after the holiday season to continue the boost, but I think it's heartening to see all the creative ways family & friends from everywhere are stepping up with to help me reach my goal.

October 29, 2015

I'm finally home. Released today from the rehab center & now recouping at home. Check out this nice feature from the Morning Call (my local newspaper) on the cookie sale that my friends at Mitzi's table spontaneously started about a month ago that is concluding at the end of the month: http://www.mcall.com/news/local/burbs/mc-mitzis-table-transplant-fundraiser-20151028-story.html

October 19, 2015

I had a serious car accident on October 8th to contemplate matters. Someone collided with me near head-on though I did my best to avoid it. I cracked a rib and had some other superficial injuries as well as pneumonia from the airbag dust. I am still recovering. I've been in an inpatient rehab since Friday and have been making progress on my own this weekend in baby steps to try to speed my recovery but taking it slow enough to not wear myself out. Will start rehab tomorrow and hopefully they can help me get back to close to or where I was before the accident. Meanwhile, people continue to visit me & rally around me & I am touched & humbled by the outpouring of support for me. This is extremely heartening for me to see & I appreciate it.

October 5, 2015

We've cleared 5K now....This is really great. I appreciate everyone's efforts so much!

October 4, 2015

So my friends at Mitzi's Table, my favorite Sunday brunch hangout, have been working hard the last few weeks. Cookies for Nicole is in full effect until the end of the month. $280 raised in the first week alone. It's so great to see this.

In addition, my friends in the advocacy community, like Casey Quinlan (Mighty Casey) are also leading social media charges to drive donations & continuing to share my page & leave messages of cheer.

This positive energy & momentum is really touching & helpful.

September 29, 2015

Wow, Team Nicole in all locations & all facets of my life are pulling out the stops right now. I'm impressed, moved & appreciative. We're almost at the $5K mark with no signs of stopping just yet. This is awesome people!

September 23, 2015

Looks like a few new spontaneous fundraisers have popped up again. Sunday November 1st in Clark, at the Legion my hometown friends & family are hosting a pancake supper.

In addition, my cousins Heidi & Jeremy Seefeldt who own Boss' Pizza & Chicken have a 10th Anniversary coming up & 10 percent of sales on September 29th will be donated. I appreciate all of this help & we are really are making a dent in achieving my goal. It's really inspiring for me to see so many people pitching in & helping me out with this.

All the likes & shares & donations to this page are also appreciated. It's been touching to see how many people from all aspects of my life have come forward to help me. I'm very fortunate to know so many caring people.

September 21, 2015

I received another spontaneous leg up this weekend to move the meter forward. Thanks to Jim & Colleen; Elwood & Vickie for sending in donations to deposit & add to the kitty.

September 20, 2015

I walked into the most pleasant & thoughtful surprise today (Sunday morning). Where I live there's this fabulous brunch spot. I go in there with another friend quite frequently, in fact every Sunday that I can. When I walked in this morning, much to my surprise they had a "Cookies for Nicole" campaign set-up. For each cookie that they sell up until November 1, they are setting aside 100 percent of the proceeds of each cookie they sell for my medical fund. This came totally spontaneously & unprompted but I love the sentiment & creativity behind it. Matt & Susan are both hard-working small business owners who appreciate their customers & make them feel special & appreciated besides just being warm & caring people who are wonderful to know & befriend. This effort by them & their crew was so creative & inspiring, & of course, appreciated greatly.

September 16, 2015

Nicole's improv buddies set up a donation fund for Nicole at tonight's Improv Comedy Bar Brawl show and raised $173 dollars. Thanks so much to the Lehigh Valley Improv community. Special thanks to Amber, Steph, Andy and Dan for making this happen.

( posted by Elizabeth)

September 15, 2015

Heidi Larson (a long-time childhood friend of mine) and I have been working on setting up a Jamberry nail fundraiser for October to end of November. Once we have all the details in place, I'll post the fundraiser details here under Fundraising activities.

But I'm working with a volunteer friend, Penney Parks on an online Pampered Chef fundraiser as well. So if that's more your speed, then stay tuned.

I'm choosing a mix of online fundraisers too because I know some people enjoy them & it makes it easier for everyone to participate but I'm also hoping to fold in some other things too.

This provides me with a pleasant distraction while I'm off work as I won't be cleared to go back until after my transplant, unfortunately.

All in all, I'm overwhelmed at all the help I've been getting from my friends with donations and setting up my potential fundraising endeavors so far. Thank you so much!

September 13, 2015

The day I launched my fundraising page I received a very special message from two friends from my small town who I've known a long time. They wanted to do something simple & immediate to help. They routinely grow veggies, bread and eggs on their own. They decided to set up a veggie sale for me then & there this very week as a small way to make a donation here to this fund in a creative way. That "small way" raised $175. I am very humbled and impressed but want to thank Anita & Edith as well as the group who all purchased vegetables. I just point this out to show that people get creative on their own to help their friends in need & also promote their own ways to make a donation to this page in ways I had never even thought about! Well done ladies! I'm fortunate to have such good friends. By the time that's accounted for and cleared along with a few others who are sending donations via mail, I will be over $2200 since this page launched.

My best friend from childhood, Heidi is a Jamberry consultant & we are working on doing something with that soon as well to kick this off with a first event. So stay tuned for details on that as well.

Thanks so much for all the daily well wishes. It's so comforting and inspiring.

September 9, 2015

I want to thank everyone so much for their support so far. I am so pleasantly surprised at the generosity of others to help me with this. I just wanted to post a quick update. There are a few more tests & data my doctors want to get together now, but I will most likely be listing in 2 months. I unfortunately had another drop in my lung function since April & it showed up during the evaluation so yesterday they reviewed the results and told me they feel I'm a good candidate for a transplant. I think this 2 months is prep time to come up with a good plan & to get more data together to strengthen my case and score. Even though I'm using more oxygen now on a daily basis with most activities, I am hanging in there, and this support helps so much.

Soon the calls & delegations will come from my family, friends, & me to help delegate & start planning some fundraisers. But everyone has gotten us off to a great start so far towards our goal and I want you to know that it is sincerely appreciated.

September 3, 2015

One of my goals before Labor Day was to set up this fundraising page with HelpHOPELive. I set a stretch goal of $20,000 at this time; as this is meant to be a long-term fund. There is no race to hit this goal. However, I feel it's attainable over time with the help of friends.

Even if we fall short on this effort ultimately, every dollar towards this amount will help & is appreciated. Please note that any contribution you make is tax-deductible & goes specifically to my medical fund.

If I am not immediately listed after discussing my evaluation test results on 9/8 with my doctor, I will still need to start fundraising; so I felt now was a good time to set up this page & start to circulate it.

Right now, I am unable to work. If I am unable to return to my job, I will then have to start making payments to keep my present insurance as even if I receive Social Security Disability, I will not be eligible for Medicaid for at least 2 years.

I'd like to try & offset some of those costs through this fund if possible.

If I am listed immediately, then I will still have those costs, plus additional medical costs, both pre-transplant & post-transplant which will add up & continue over time. I don't say this to scare people in to giving. I just want them to know that this money is only used for medical expenses such as these.

I am going to start planning fundraisers soon after I have things laid out a bit more after my follow up appointment on 9/8/15. As I announce them, they will be posted here.

If you'd like to volunteer to help in any way, in lieu or in addition to making a donation, please contact me & I'll put you in touch with my fundraising coordinator here at HelpHOPELive so we can all work together on some fun & successful & low-stress events.

I welcome people to get involved even if they just want to distribute fliers or a coin bank in their area or volunteer for a night. It all will help & the effort is sincerely appreciated.

Thank you all for your support.