Whew. The last week has been full of activity! Some I was involved with, some I wasn't, but all were awesome and left us feeling even more thankful and blessed than ever. God's grace continues to bless my family and I continue to be in awe of how incredible this journey has been. I know Ive said this over and over, but I am still so overwhelmed by all that has happened the last two months. As soon as I think Im getting used to this new life and all the incredible things that have come along with it - BAM! I get more news that just completely floors me! Thankfully, all this flooring news has been GOOD flooring news, so we'll just hope this trend continues!
As some of you may have seen on my FB post last week, I had my standard Mayo work up, which consists of blood work, chest X-ray, pulmonary function tests (PFT) and the lovely bronchoscopy and lung biopsy. Everything went well the day of testing, as it usually does. Everything at first glance looked great, but as usual, you never really know the full results until the next day. What I did know for sure though was that my PFTs were again improved from the previous week - up to 88%! This was the first PFT that resulted in completely NORMAL results! For the first time, the doctor reviewing my results looked at me and said, " Great news, you are officially showing NO red!" To which I replied, "Huh?" She explained that all the different measurements we took, when entered into the computer, either appears black or red. Red is below normal, black is normal. For the first time since I can't even tell you when, prolly high school or earlier, ALL MY NUMBERS WERE BLACK! I am officially breathing with a NORMAL lung function!!! And she says that for the next month they will continue to climb gradually, as opposed to the near 10% jumps Ive been seeing, but that she wouldn't be surprised if I hit 100% before I head home! Can you even believe that?? I can't! To think that exactly two months ago I was hardly breathing at a sad 21% and today I am breathing at 88%!--incredible. You cant imagine the prayers Ive been sending up lately! I cant thank God enough for the amazing gift He and my donor have given to me. I have always believed in organ donation and the importance of it, but until I went through this transplant the full magnitude of it was lost on me. I have a completely new understanding of the incredibly LIFE CHANGING gift this is and the amazing sacrifice my donor and his family have made. Without his decision to be an organ donor I may not be here today, and I absolutely wouldn't be breathing NORMALLY if I was! If you get a chance, please send up a prayer for my donor and his family. Losing a member of your family is possibly the hardest thing any family can go through especially when the person is young, healthy and taken from you suddenly. Also, if you'd like more information about transplant and becoming an organ donor, please check out the donation and transplantation page of my blog!
PFT HISTORY -- look at those numbers! :)
Where were we? Oh yeah - test results! So as you can imagine I was thrilled with the PFT news! But as the recent past has dictated, that doesn't mean everything is perfect. I still haven't completely figured that one out, but oh well. My past few biopsies has showed mild rejection. We have made modifications to my meds and continued my pulmonary rehab. Its been about three weeks since my last bronch, and as I have mentioned, I have been incredibly anxious about the length of time between biopsies. I know that if things were getting worse there would be indicators - fever, congestion, fatigue, pain, etc. Luckily Ive had none of that, but honestly I never did, and still had rejection. So needless to say (as most of you know from previous posts) my anxiety level going into my follow up appointments is always through the roof, and learning about the rejection never helps. This week tho, I walked in anxious, but walked out of there on cloud 9! My doctor told me that not only was he thrilled with my PFTs, but that my X-rays were perfect and that my biopsy came back showing no infection and NO REJECTION! Finally!! As of now, my recovery is going PERFECTLY. We adjusted some of my meds, reducing the amounts of meds I am taking, which is always the goal. Of course we have to keep an eye on my blood work and the PFTs, X-rays and bronchs to make sure everything stays going well, but for now everything looks great! My only issue was that my magnesium levels were low again ( a combination of medication side effects and my difficulty with absorption due to my cystic fibrosis ). So the next day I had to head back over to Mayo for FOUR HOURS of IV magnesium to jump my levels back up before we increased my daily dosage. So for now, Im doin really well and just continuing with my weekly appointments and rehab, presumably just for another month before it'll be time to head home!
Speaking of rehab, I officially hit the two month mark post transplant this weekend (whooo hooo!), which means my weight lifting restrictions have been lifted and I am officially done with supervised rehab. Now I can finally lift more than ten dang pounds and I can do my rehab workouts at Mayo alone (you have no idea how great this is gonna be) and at my own pace (which, again, is going to be so much better) . Up until now the last few weeks have been very frustrating with so many limitations on what I can do and how fast I can go. I mean don't get me wrong, I understand the reasoning. Apparently studies have shown that by overdoing it at rehab, i.e. lifting too much weight too soon can cause wounds to open or the sutures within the lung to fail and the patient survival rate drops to only 50%! So thats def not something I want to happen so I have been going along with it, but I haven't been happy about it. This happened just in time, as my patience with the snails pace has been dwindling down to a dangerously low level.
Also last week, three fundraisers were held to help Chris and I with our ever increasing medical bills resulting from this transplant. Id like to say a huge thank you to everyone who attended the Premier Jewelry party and to jewelry consultant, Ashleigh Hinson, who donated 50% of her sales to us. If anyone would like more information about Premier Jewelry or to order some really fantastic jewelry give me a shout and Id be happy to pass along her information to you.
Premier Jewelry consultant Ashleigh Hinson, and the party hosts - my sister Jillian Stallings and her mother-in-law Donna Stallings.
Another fundraiser was actually an annual golf tournament in Albemarle NC, Chris and I's hometown. The Green Gopher Invitational is held by a number of young professionals in Albemarle every year. Each year the proceeds from the tournament go to locals who are in need of assistance and/or local charities. This year Chris and I were humbled to be one of the recipients of the GGI gift, along with the William M Hudson Memorial Scholarship Fund. We are so grateful to Ben Lisk and the other organizers of the GGI and the generosity of everyone who sponsored or participated this year. We hope everyone had an amazing time at the Friday night kick off party and during the tournament on Saturday!
The final fundraiser was a cornhole tournament held Saturday at the bowling alley in Albemarle. Ashley Huneycutt and Jennifer Coble worked hard to put that one on and I am again, so grateful. We have been shown so much love from our hometown of Albemarle and it continues to overwhelm us. Thanks to all who participated in this event as well. That was one I truly hated to miss! ( yall may not know this but Im kind of amazing at cornhole...just sayin )
Speaking of Friday, Chris and I had a visitor! Chris' father Wayne was in Jacksonville for just one day due to work obligations and we were able to spend some time with him. It was great because we don't get a chance to see his family much because of work schedules. His mother and older sister came to Jacksonville right after my transplant but Wayne wasn't able to join them, so it was great to have the opportunity to have him here! We picked him up and went to Waffle House, then we headed to the beach to relax for most of the afternoon. I sat under our canopy in my clothes and took a nap, while the Taylor men relaxed and enjoyed a little QT together! Let me tell you..those are some entertaining men haha :). After that we headed back to the apartment where we grilled out and relaxed in front of the TV. A pretty low key visit, but it was great to catch up with him and I was glad Chris got the chance to see his dad. And I think Wayne enjoyed his time at Jacksonville Beach so I think we've sold him on a return trip! :)
Chris and his father Wayne enjoyin some father/son time at Jacksonville Beach.
Cut to today. Another appointment at Mayo. I met with Dr Rosser today, the liver transplant doctor. Some of you may remember that at the beginning of this whole transplant journey I was being evaluated for both a lung transplant and possible liver transplant. Because of my cystic fibrosis, my liver has some mild scarring and blocked bile ducts resulting in less than stellar liver function. One of the main concerns with that was the possibility of liver failure immediately after such an intense surgery like a lung transplant, which would be deadly because they would not have been able to go in and transplant the liver afterwards. Partly because of time limitations, partly because it would be too traumatic of a surgery to do right after the first was completed. So the possibility was that I would need both lungs and liver at the same time. I went through the evaluation process and it turns out that currently my liver is not bad enough yet to transplant. So we went ahead with the lung transplant, but will continue to monitor the liver function closely and reevaluate as needed. So meeting with Dr Rosser today was about how we will continue to monitor the liver once I go home and what issues we are currently facing. Right now my liver enzyme levels are a little elevated. Im not having any symptoms of liver failure though so he's not really concerned. Apparently three medications I am on cause this rise in enzyme level and if adjusted early enough liver failure can be avoided. So he is going to discuss my medications with my transplant team. The good thing is he says is that my liver is "consistently off" so even though the numbers are elevated, they are fluctuating within a 20 point range and not rising. He is going to continue to monitor my blood tests and has scheduled a follow up MRI at my return appointment once I have been home for three months. Then we will follow up with MRIs and ultrasounds every 6 months for the first two years and then will probably drop to once a year if everything remains stable. So as it stands, everything liver wise is pretty much where it has been which is great news. Sometimes the trauma from a surgery like that and the follow up medications can cause serious problems so we are glad that the decision to hold off on the liver has proven to be the right choice for now! He gave me a laundry list of symptoms to look for which could indicate deteriorating liver function and instructions to come straight to the hospital if any appear. So prayers that my liver function would remain stable, or hey if your really feelin frisky, prayer for IMPROVED liver function - that would be even better!
So thats pretty much it for now. This week is pretty low key, just working out and some X-rays and follow up appointments later this week. Thank you all again for continuing on this journey with us. The continued support and love is so important to us and we are eternally grateful.
Much love...
Erin
As some of you may have seen on my FB post last week, I had my standard Mayo work up, which consists of blood work, chest X-ray, pulmonary function tests (PFT) and the lovely bronchoscopy and lung biopsy. Everything went well the day of testing, as it usually does. Everything at first glance looked great, but as usual, you never really know the full results until the next day. What I did know for sure though was that my PFTs were again improved from the previous week - up to 88%! This was the first PFT that resulted in completely NORMAL results! For the first time, the doctor reviewing my results looked at me and said, " Great news, you are officially showing NO red!" To which I replied, "Huh?" She explained that all the different measurements we took, when entered into the computer, either appears black or red. Red is below normal, black is normal. For the first time since I can't even tell you when, prolly high school or earlier, ALL MY NUMBERS WERE BLACK! I am officially breathing with a NORMAL lung function!!! And she says that for the next month they will continue to climb gradually, as opposed to the near 10% jumps Ive been seeing, but that she wouldn't be surprised if I hit 100% before I head home! Can you even believe that?? I can't! To think that exactly two months ago I was hardly breathing at a sad 21% and today I am breathing at 88%!--incredible. You cant imagine the prayers Ive been sending up lately! I cant thank God enough for the amazing gift He and my donor have given to me. I have always believed in organ donation and the importance of it, but until I went through this transplant the full magnitude of it was lost on me. I have a completely new understanding of the incredibly LIFE CHANGING gift this is and the amazing sacrifice my donor and his family have made. Without his decision to be an organ donor I may not be here today, and I absolutely wouldn't be breathing NORMALLY if I was! If you get a chance, please send up a prayer for my donor and his family. Losing a member of your family is possibly the hardest thing any family can go through especially when the person is young, healthy and taken from you suddenly. Also, if you'd like more information about transplant and becoming an organ donor, please check out the donation and transplantation page of my blog!
PFT HISTORY -- look at those numbers! :)
Where were we? Oh yeah - test results! So as you can imagine I was thrilled with the PFT news! But as the recent past has dictated, that doesn't mean everything is perfect. I still haven't completely figured that one out, but oh well. My past few biopsies has showed mild rejection. We have made modifications to my meds and continued my pulmonary rehab. Its been about three weeks since my last bronch, and as I have mentioned, I have been incredibly anxious about the length of time between biopsies. I know that if things were getting worse there would be indicators - fever, congestion, fatigue, pain, etc. Luckily Ive had none of that, but honestly I never did, and still had rejection. So needless to say (as most of you know from previous posts) my anxiety level going into my follow up appointments is always through the roof, and learning about the rejection never helps. This week tho, I walked in anxious, but walked out of there on cloud 9! My doctor told me that not only was he thrilled with my PFTs, but that my X-rays were perfect and that my biopsy came back showing no infection and NO REJECTION! Finally!! As of now, my recovery is going PERFECTLY. We adjusted some of my meds, reducing the amounts of meds I am taking, which is always the goal. Of course we have to keep an eye on my blood work and the PFTs, X-rays and bronchs to make sure everything stays going well, but for now everything looks great! My only issue was that my magnesium levels were low again ( a combination of medication side effects and my difficulty with absorption due to my cystic fibrosis ). So the next day I had to head back over to Mayo for FOUR HOURS of IV magnesium to jump my levels back up before we increased my daily dosage. So for now, Im doin really well and just continuing with my weekly appointments and rehab, presumably just for another month before it'll be time to head home!
Speaking of rehab, I officially hit the two month mark post transplant this weekend (whooo hooo!), which means my weight lifting restrictions have been lifted and I am officially done with supervised rehab. Now I can finally lift more than ten dang pounds and I can do my rehab workouts at Mayo alone (you have no idea how great this is gonna be) and at my own pace (which, again, is going to be so much better) . Up until now the last few weeks have been very frustrating with so many limitations on what I can do and how fast I can go. I mean don't get me wrong, I understand the reasoning. Apparently studies have shown that by overdoing it at rehab, i.e. lifting too much weight too soon can cause wounds to open or the sutures within the lung to fail and the patient survival rate drops to only 50%! So thats def not something I want to happen so I have been going along with it, but I haven't been happy about it. This happened just in time, as my patience with the snails pace has been dwindling down to a dangerously low level.
Also last week, three fundraisers were held to help Chris and I with our ever increasing medical bills resulting from this transplant. Id like to say a huge thank you to everyone who attended the Premier Jewelry party and to jewelry consultant, Ashleigh Hinson, who donated 50% of her sales to us. If anyone would like more information about Premier Jewelry or to order some really fantastic jewelry give me a shout and Id be happy to pass along her information to you.
Premier Jewelry consultant Ashleigh Hinson, and the party hosts - my sister Jillian Stallings and her mother-in-law Donna Stallings.
Another fundraiser was actually an annual golf tournament in Albemarle NC, Chris and I's hometown. The Green Gopher Invitational is held by a number of young professionals in Albemarle every year. Each year the proceeds from the tournament go to locals who are in need of assistance and/or local charities. This year Chris and I were humbled to be one of the recipients of the GGI gift, along with the William M Hudson Memorial Scholarship Fund. We are so grateful to Ben Lisk and the other organizers of the GGI and the generosity of everyone who sponsored or participated this year. We hope everyone had an amazing time at the Friday night kick off party and during the tournament on Saturday!
The final fundraiser was a cornhole tournament held Saturday at the bowling alley in Albemarle. Ashley Huneycutt and Jennifer Coble worked hard to put that one on and I am again, so grateful. We have been shown so much love from our hometown of Albemarle and it continues to overwhelm us. Thanks to all who participated in this event as well. That was one I truly hated to miss! ( yall may not know this but Im kind of amazing at cornhole...just sayin )
Speaking of Friday, Chris and I had a visitor! Chris' father Wayne was in Jacksonville for just one day due to work obligations and we were able to spend some time with him. It was great because we don't get a chance to see his family much because of work schedules. His mother and older sister came to Jacksonville right after my transplant but Wayne wasn't able to join them, so it was great to have the opportunity to have him here! We picked him up and went to Waffle House, then we headed to the beach to relax for most of the afternoon. I sat under our canopy in my clothes and took a nap, while the Taylor men relaxed and enjoyed a little QT together! Let me tell you..those are some entertaining men haha :). After that we headed back to the apartment where we grilled out and relaxed in front of the TV. A pretty low key visit, but it was great to catch up with him and I was glad Chris got the chance to see his dad. And I think Wayne enjoyed his time at Jacksonville Beach so I think we've sold him on a return trip! :)
Chris and his father Wayne enjoyin some father/son time at Jacksonville Beach.
Cut to today. Another appointment at Mayo. I met with Dr Rosser today, the liver transplant doctor. Some of you may remember that at the beginning of this whole transplant journey I was being evaluated for both a lung transplant and possible liver transplant. Because of my cystic fibrosis, my liver has some mild scarring and blocked bile ducts resulting in less than stellar liver function. One of the main concerns with that was the possibility of liver failure immediately after such an intense surgery like a lung transplant, which would be deadly because they would not have been able to go in and transplant the liver afterwards. Partly because of time limitations, partly because it would be too traumatic of a surgery to do right after the first was completed. So the possibility was that I would need both lungs and liver at the same time. I went through the evaluation process and it turns out that currently my liver is not bad enough yet to transplant. So we went ahead with the lung transplant, but will continue to monitor the liver function closely and reevaluate as needed. So meeting with Dr Rosser today was about how we will continue to monitor the liver once I go home and what issues we are currently facing. Right now my liver enzyme levels are a little elevated. Im not having any symptoms of liver failure though so he's not really concerned. Apparently three medications I am on cause this rise in enzyme level and if adjusted early enough liver failure can be avoided. So he is going to discuss my medications with my transplant team. The good thing is he says is that my liver is "consistently off" so even though the numbers are elevated, they are fluctuating within a 20 point range and not rising. He is going to continue to monitor my blood tests and has scheduled a follow up MRI at my return appointment once I have been home for three months. Then we will follow up with MRIs and ultrasounds every 6 months for the first two years and then will probably drop to once a year if everything remains stable. So as it stands, everything liver wise is pretty much where it has been which is great news. Sometimes the trauma from a surgery like that and the follow up medications can cause serious problems so we are glad that the decision to hold off on the liver has proven to be the right choice for now! He gave me a laundry list of symptoms to look for which could indicate deteriorating liver function and instructions to come straight to the hospital if any appear. So prayers that my liver function would remain stable, or hey if your really feelin frisky, prayer for IMPROVED liver function - that would be even better!
So thats pretty much it for now. This week is pretty low key, just working out and some X-rays and follow up appointments later this week. Thank you all again for continuing on this journey with us. The continued support and love is so important to us and we are eternally grateful.
Much love...
Erin
Great News!! We are all proud of you!! I am doing a 30 mile bike ride on Sunday for CF Foundation with a patient of mine one year post transplant.... Next year we can do the bike ride together!
ReplyDeleteThank you Dr L! And thanks again for all you have done for me the last four years and the fantastic Mayo recommendation! They have exceeded all my expectations. I cant wait to get back in to CFPG to see you guys! And I am totally in on the bike ride next year! :) Ive already committed myself to a 5K run, but Id love to try a 30 mile bike ride! I'll hafta buy a bike tho! :)
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