I haven't written in a while. For so long CF was taking over every aspect of my life. I didn't want to dedicate more time to CF and talk about it in my blog. A year ago I just finished transplant testing and CF seemed to be at the front of everything. I wanted to push CF to the back of my mind and ignore it's existence. Of course, my failing health wouldn't let me and so I took a break from blogging to get a mental break from thinking too deeply about what was happening in my life.
In November, Trikafta entered my life. Suddenly, I had energy, I had health, I had hope. I was busy living life. So many fears and worries of the future melted away and I didn't want to stop living my life to write about CF in my blog.
Then March arrived and Coronavirus arrived in the US. Schools closed, my husband's work closed, and we were told to hide in isolation from everyone we knew. It is amazing how quickly life can change.
It is strange how my "corona" life has mirrored so much of my late stage CF life. So much fear of germs, wearing masks in public, missing out on fun things in the name of health and safety. It almost feels like life as usual except I am not the only one canceling fun activities, wearing a mask, slathering hand sanitizer whenever I touch anything outside my home. The strangest part is while the world is suffering and struggling I personally feel well. While thousands of people worldwide are gasping for air, suffocating, feeling the exhaustion that comes from the lack of oxygen, I am breathing fine. I no longer wake up coughing, I no longer experience shortness of breath, I can breathe. And I guess I should feel relief...and I do.
But man, my heart breaks for every person suffering right now. I know too intimately what they feel, despite never experiencing coronavirus. I know the fear, the panic, the pain that comes from lungs that are failing you. And I have had 35 years to cope with it, and 35 years of getting through so that I can tell myself (even lie to myself) that I will be fine even when I struggle to breath. But all of these people are experiencing it for the first time and the fear they feel must be extraordinary. My heart breaks for them. My heart breaks for their family.
It feels so weird to feel healthy in a suffering world when for the past few years I felt suffering in what felt like a healthy world.
Showing posts with label transplant. Show all posts
Showing posts with label transplant. Show all posts
Tuesday, April 21, 2020
Friday, May 10, 2019
Transplant Evaluation Day 4
I have been putting this entry off for a while. Partly because I have been busier with the nicer weather, but also because I just wanted to move on. When I first got back from my evaluation I was wanting to process what I had gone through (we actually went on a little getaway right after which was why my blog posts were delayed). I wrote the 2 entries right away, but then I felt my feelings switch and I just wanted to tuck it away in a quiet spot in my mind and move on. But I know how much I wanted to hear about the evaluation process when I was waiting and so here I am writing about my final day even though so much of me wants to shut the computer off and forget that piece of my life. I clearly, have bad coping skills!
Thursday was the day I had scheduled for my heart Cath. We had to leave our air BnB by 11 and my appointment was for 12:30. We packed up all our food (bringing food and staying in an air bnb was such a money saver btw) our clothing and then went to find gas knowing it would be a long day and we had a long drive when it was over. We got to Stanford early and checked in around noon. The heart cath area was so busy. They had screens with case numbers (which we were given when we signed in) and everything was color coded so while family waited in the waiting room they could watch the progress of the procedure via the colors on the screen. If your loved one's case number was glowing green you were getting prepped, if you were orange you were in the procedure, etc. It reminded me of an airport! It also made me feel a little less nervous seeing how many people were undergoing some variation of the heart cath. They clearly do a ton of them at Stanford!!
I needed to be fasting and I was surprisingly hungry. The various fasting requirements and the schedule made me feel like I was in a calorie deficit and I was starting to feel it by the 4th day. The average age in the waiting room was probably 70+ so I felt my husband and I looked very much out of place. There was an elderly couple that were sitting across from me and I couldn't help, but hope that my husband and I can still be alive and well when we get to their age. Unfortunately, the heart cath was very behind. I was finally called back after waiting for what felt like forever. I had to go alone and they told my husband that after I was prepped they would come get him. They then asked a million questions before the procedure. She asked a few questions about my husband and I and then commented that we must have married very young. I got married at 26 which is relatively young in todays standards (and even more so for our area). The nurse acted surprised and then asked how old I was. She was shocked I was 35. CF patients are notorious for looking young and I did during my whole malnourished underdeveloped stage. But being fair skinned in a sunny climate hasn't been kind to me and I think I look my age so I instantly loved this nurse. Of course, like I said the average age in the heart cath was 70+ so I doubt my nurse had a good gauge on how old 35 year olds are supposed to look. She also told me about a friend of hers whose daughter had CF and had a lung transplant.
During my intake a nurse came to access my port. This was the first time at Stanford that I felt like the nurse was unsure of how to access a port. My intake nurse was trying to tell me a story about how they are using something from a squid to do CF research. I am sure (like many nurses over the week) she was trying to distract me from the port access. However, I can NOT be distracted during a port access because I am super controlling about it. I felt rude, but basically ignored the intake nurse and was focusing and giving advice to the nurse working on my port. She explained she used to access them all the time, but it October was her last access after changing departments and she was having trouble feeling the 3 dots on my power port. The second she poked me I told her she missed (I was right), but she got it the second time and it was fine. After they brought my husband back and Ii figured the procedure would begin soon after, but we had no idea just how long our wait would end up.
The nurses seemed to switch around and it seemed like person after person was being called back and we were left to wait. We tried to ask what was going on, but it seemed everyone we asked said they weren't on my case anymore. I am still not sure which nurse was mine towards the end (I had so many switch to different patients). The woman across the way (we were all lined up in a big room separated by curtains) was someone that was in my lung transplant class. We exchanged thumbs up as she was wheeled to her procedure . I tried to nap and watch videos on my phone but the hunger and thirst (the worst!) and the nerves were getting to me a bit. I guess while I was napping the elderly man from the waiting room (his wife was having the procedure) popped in to check in on our progress. It was so very kind for him to show concern for us when he clearly had big concerns of his own. Later, when he was leaving he walked by our waiting area and waved and wished us the best of luck. Writing this is bring tears to my eyes. It was such an emotional week and this particular day was hard because we waited so very long and I was so nervous. To have a stranger reach out and show some support when he had his own concerns and struggles reminded me how kind hearted people can be and it meant so much to the both of us.
A little before 5 (!!!) the surgeon finally came too talk to me! This was 5 hours after getting to Stanford and after fasting for way too long. The first thing the surgeon said was, "where is your IV?" When I told him my port was accessed he said the port was great for anything they will give me during the procedure, but he needed an IV as a guide for the catheter. I seriously wanted to scream. I was so dehydrated I felt like I was a raisin after fasting (both liquids and food) for so many hours and they wanted to start an IV. That should have been done at 12:30 when I had only been fasting 6 hours or so. Of course, the first IV failed and the nurse called someone else. They started getting stressed because the nurse failed in the spot that needed an IV. They ended up putting it in more to the right and thank goodness the second one worked (although this ended up backfiring later).
Finally, a nurse came out and started to get me ready for the procedure. I told her the intake nurse told me I would get a valium, but since I was delayed I never got it. This nurse acted like a valium was overkill, but agreed to give me one since I requested. I have never had a valium before so I am not sure what it is supposed to feel like, but I think they gave me a sugar pill or such a low dose it was useless because it had zero effect on me. As I was being wheeled out of the heart cath a family was sitting in the last curtain waiting for their own procedure. As I was being wheeled by they all gave me a thumbs up and wished me luck. There are so many kind people in this world!!
When I got the procedure room they prepped my arm, hooked me up to heart monitors and put oxygen on my nose (although they said it was a precaution and there was no oxygen in it at the time). They used lidocaine to numb my arm. The whole thing reminded me a bit of getting a PICC line in radiology with a bit more set up and many more nurses and respiratory therapists around.
When I am having medical procedures done I have this control issue that I have to know what is going on. I think having people doing things TO YOU can make you feel out of control and the only way I don't stress is if I know step by step what is happening. So I kept asking a bunch of annoying questions. Did the catheter go in? Is it stringing okay? I bet they wish I was put to sleep. And my stress level/anxiety clearly wasn't soothed with the valium they gave me. And then I knew that something wasn't going well because with PICC lines the line is put in until it hits right above your heart. With a heart cath it goes into your heart. In distance, this isn't a big difference, but I could tell it was taking too long. So I started questioning again. The nurse was kind and turned the screen so I could watch the wire. He actually didn't need to show me because I knew what was happening. It was the same thing happened so many times in the past with PICC lines. The wire was curling back on itself because something was blocking its path. They said it may have been my port among other things. I knew it wasn't my port because this was an awful dejavu that I had been through a dozen times before. It was some weird anatomy of my veins. The next thing I knew some woman came out of a back room and said that my arm wasn't working so they were going to try through my neck. I groaned. They decided to try one more time on my arm. I protested a bit because of my history with PICC lines. Considering my last PICC line took 9 attempts I was more concerned about getting it right than going through my arm.
It is interesting because I haven't had a PICC line in over 6 years. It was amazing how quickly I was thrown back into all the feelings and stress that came with all the failed attempts. The heart cath procedure wasn't bad, but it brought back a lot of old feelings that I had forgotten and somehow felt so much heavier and uglier when they resurfaced.
So they tried the second time. I asked them to tell me when the catheter was placed, but heard the distinctive POP that comes when a vein is accessed so I told them before they even had a chance to tell me that it worked. I have a feeling they hated me and my nonstop commentary. When I asked if the wire was able to thread they assured me it had. I felt so much relief until the nurses started rushing around my bed and the mood of the room changed. I looked around for someone to tell me what was going on, but everyone was clearly very occupied. I finally said, "Is everything alright? Am I alright?" Apparently, my heart monitors stopped showing clear readings. They assured me that it was nothing to do with ME, but the monitors were acting funny. At this point I was really wishing the valium had helped, but instead I watched the clock on the wall trying to pretend it was 10 minutes later when the whole thing would be finished.
Soon enough the doctor assured me that my results were good and that my CF had not negatively effected my heart and I was off to recovery. Unfortunately, because I had two catheters in I had to go to a step down recovery where my husband could not join me. They needed a nurse to remove my catheters and hold pressure on them for 15 minutes and so I needed too be in a step down where a nurse could give me the needed attention. The nurse that did remove my catheters was actually my favorite nurse of my stay in Stanford.
Finally, I was moved to a regular recovery area and I was finally able to see my husband. And thank goodness for him because one of the first things he said was, "when can she eat?" The nurse got me a snack kit with brie, crackers and grapes. It was one of the best tasting things I have ever eaten. I was so happy to have food and water again! At this point it was just about 7:00 and I was so ready to say goodbye to Stanford and get back home to my kiddo. Unfortunately, (I am using that word a lot), the worst was yet to come...
Thursday was the day I had scheduled for my heart Cath. We had to leave our air BnB by 11 and my appointment was for 12:30. We packed up all our food (bringing food and staying in an air bnb was such a money saver btw) our clothing and then went to find gas knowing it would be a long day and we had a long drive when it was over. We got to Stanford early and checked in around noon. The heart cath area was so busy. They had screens with case numbers (which we were given when we signed in) and everything was color coded so while family waited in the waiting room they could watch the progress of the procedure via the colors on the screen. If your loved one's case number was glowing green you were getting prepped, if you were orange you were in the procedure, etc. It reminded me of an airport! It also made me feel a little less nervous seeing how many people were undergoing some variation of the heart cath. They clearly do a ton of them at Stanford!!
I needed to be fasting and I was surprisingly hungry. The various fasting requirements and the schedule made me feel like I was in a calorie deficit and I was starting to feel it by the 4th day. The average age in the waiting room was probably 70+ so I felt my husband and I looked very much out of place. There was an elderly couple that were sitting across from me and I couldn't help, but hope that my husband and I can still be alive and well when we get to their age. Unfortunately, the heart cath was very behind. I was finally called back after waiting for what felt like forever. I had to go alone and they told my husband that after I was prepped they would come get him. They then asked a million questions before the procedure. She asked a few questions about my husband and I and then commented that we must have married very young. I got married at 26 which is relatively young in todays standards (and even more so for our area). The nurse acted surprised and then asked how old I was. She was shocked I was 35. CF patients are notorious for looking young and I did during my whole malnourished underdeveloped stage. But being fair skinned in a sunny climate hasn't been kind to me and I think I look my age so I instantly loved this nurse. Of course, like I said the average age in the heart cath was 70+ so I doubt my nurse had a good gauge on how old 35 year olds are supposed to look. She also told me about a friend of hers whose daughter had CF and had a lung transplant.
During my intake a nurse came to access my port. This was the first time at Stanford that I felt like the nurse was unsure of how to access a port. My intake nurse was trying to tell me a story about how they are using something from a squid to do CF research. I am sure (like many nurses over the week) she was trying to distract me from the port access. However, I can NOT be distracted during a port access because I am super controlling about it. I felt rude, but basically ignored the intake nurse and was focusing and giving advice to the nurse working on my port. She explained she used to access them all the time, but it October was her last access after changing departments and she was having trouble feeling the 3 dots on my power port. The second she poked me I told her she missed (I was right), but she got it the second time and it was fine. After they brought my husband back and Ii figured the procedure would begin soon after, but we had no idea just how long our wait would end up.
The nurses seemed to switch around and it seemed like person after person was being called back and we were left to wait. We tried to ask what was going on, but it seemed everyone we asked said they weren't on my case anymore. I am still not sure which nurse was mine towards the end (I had so many switch to different patients). The woman across the way (we were all lined up in a big room separated by curtains) was someone that was in my lung transplant class. We exchanged thumbs up as she was wheeled to her procedure . I tried to nap and watch videos on my phone but the hunger and thirst (the worst!) and the nerves were getting to me a bit. I guess while I was napping the elderly man from the waiting room (his wife was having the procedure) popped in to check in on our progress. It was so very kind for him to show concern for us when he clearly had big concerns of his own. Later, when he was leaving he walked by our waiting area and waved and wished us the best of luck. Writing this is bring tears to my eyes. It was such an emotional week and this particular day was hard because we waited so very long and I was so nervous. To have a stranger reach out and show some support when he had his own concerns and struggles reminded me how kind hearted people can be and it meant so much to the both of us.
A little before 5 (!!!) the surgeon finally came too talk to me! This was 5 hours after getting to Stanford and after fasting for way too long. The first thing the surgeon said was, "where is your IV?" When I told him my port was accessed he said the port was great for anything they will give me during the procedure, but he needed an IV as a guide for the catheter. I seriously wanted to scream. I was so dehydrated I felt like I was a raisin after fasting (both liquids and food) for so many hours and they wanted to start an IV. That should have been done at 12:30 when I had only been fasting 6 hours or so. Of course, the first IV failed and the nurse called someone else. They started getting stressed because the nurse failed in the spot that needed an IV. They ended up putting it in more to the right and thank goodness the second one worked (although this ended up backfiring later).
Finally, a nurse came out and started to get me ready for the procedure. I told her the intake nurse told me I would get a valium, but since I was delayed I never got it. This nurse acted like a valium was overkill, but agreed to give me one since I requested. I have never had a valium before so I am not sure what it is supposed to feel like, but I think they gave me a sugar pill or such a low dose it was useless because it had zero effect on me. As I was being wheeled out of the heart cath a family was sitting in the last curtain waiting for their own procedure. As I was being wheeled by they all gave me a thumbs up and wished me luck. There are so many kind people in this world!!
When I got the procedure room they prepped my arm, hooked me up to heart monitors and put oxygen on my nose (although they said it was a precaution and there was no oxygen in it at the time). They used lidocaine to numb my arm. The whole thing reminded me a bit of getting a PICC line in radiology with a bit more set up and many more nurses and respiratory therapists around.
When I am having medical procedures done I have this control issue that I have to know what is going on. I think having people doing things TO YOU can make you feel out of control and the only way I don't stress is if I know step by step what is happening. So I kept asking a bunch of annoying questions. Did the catheter go in? Is it stringing okay? I bet they wish I was put to sleep. And my stress level/anxiety clearly wasn't soothed with the valium they gave me. And then I knew that something wasn't going well because with PICC lines the line is put in until it hits right above your heart. With a heart cath it goes into your heart. In distance, this isn't a big difference, but I could tell it was taking too long. So I started questioning again. The nurse was kind and turned the screen so I could watch the wire. He actually didn't need to show me because I knew what was happening. It was the same thing happened so many times in the past with PICC lines. The wire was curling back on itself because something was blocking its path. They said it may have been my port among other things. I knew it wasn't my port because this was an awful dejavu that I had been through a dozen times before. It was some weird anatomy of my veins. The next thing I knew some woman came out of a back room and said that my arm wasn't working so they were going to try through my neck. I groaned. They decided to try one more time on my arm. I protested a bit because of my history with PICC lines. Considering my last PICC line took 9 attempts I was more concerned about getting it right than going through my arm.
It is interesting because I haven't had a PICC line in over 6 years. It was amazing how quickly I was thrown back into all the feelings and stress that came with all the failed attempts. The heart cath procedure wasn't bad, but it brought back a lot of old feelings that I had forgotten and somehow felt so much heavier and uglier when they resurfaced.
So they tried the second time. I asked them to tell me when the catheter was placed, but heard the distinctive POP that comes when a vein is accessed so I told them before they even had a chance to tell me that it worked. I have a feeling they hated me and my nonstop commentary. When I asked if the wire was able to thread they assured me it had. I felt so much relief until the nurses started rushing around my bed and the mood of the room changed. I looked around for someone to tell me what was going on, but everyone was clearly very occupied. I finally said, "Is everything alright? Am I alright?" Apparently, my heart monitors stopped showing clear readings. They assured me that it was nothing to do with ME, but the monitors were acting funny. At this point I was really wishing the valium had helped, but instead I watched the clock on the wall trying to pretend it was 10 minutes later when the whole thing would be finished.
Soon enough the doctor assured me that my results were good and that my CF had not negatively effected my heart and I was off to recovery. Unfortunately, because I had two catheters in I had to go to a step down recovery where my husband could not join me. They needed a nurse to remove my catheters and hold pressure on them for 15 minutes and so I needed too be in a step down where a nurse could give me the needed attention. The nurse that did remove my catheters was actually my favorite nurse of my stay in Stanford.
Finally, I was moved to a regular recovery area and I was finally able to see my husband. And thank goodness for him because one of the first things he said was, "when can she eat?" The nurse got me a snack kit with brie, crackers and grapes. It was one of the best tasting things I have ever eaten. I was so happy to have food and water again! At this point it was just about 7:00 and I was so ready to say goodbye to Stanford and get back home to my kiddo. Unfortunately, (I am using that word a lot), the worst was yet to come...
Friday, May 3, 2019
Transplant Evaluation Day 3
To start with Day 1 go here.
I woke up Wednesday and turned to my husband and said, "I am over it. It was fun, but now I want to go home." I had a lot of adrenalin the first day and some of that carried into Tuesday, but by Wednesday it had warn off and I was ready to go home. But we were half way done and had no choice, but to continue on! So I put on my big girl panties and went to my first test.
Echocardiogram with Bubble Study: I checked into the echo lab around 8:45. I went back into the medical room where they had me change into a gown with the opening in the front (opposite of the norm). The nurse came to start an IV. I asked if she knew how to access ports and she said she was more than happy to use my port instead of a peripheral line. I was so happy! My port was coming in so handy! She left to get port supplies while the tech (Dr? Sorry, I had so many tests I wasn't sure who was a Dr and who was a tech) started the sonogram. It was very reminiscent of when I was pregnant, but instead of looking at a beautiful baby growing inside of me they were looking at my beautiful heart. Again, I was watching the screen, but it was a lot less fun than looking at baby feet and baby hands. All the pictures looked the same so I was only half paying attention. The tech was so warm and kind though which seemed to be a trend at Stanford!
When the nurse came back she accessed my port and we started the bubble portion of the test. They push saline with bubbles in through your IV and watch how they pass through the heart. Apparently, they are looking to see if any bubbles find their way to the left side of your heart. If they do, it means you have a small hole in your heart which apparently is somewhat common. When the nurse pushed the bubble saline into my port it traveled through so quickly they actually missed it! The combination of using a port which is much closer to the heart than a peripheral in the arm and my very fast heart beat made the bubbles travel faster than they anticipated. They repeated the test and then did it one more time while I clenched my stomach (like I was going to the bathroom) which apparently puts more pressure on the right side of your heart. I am 99% sure I failed this test, meaning I have a small hole in my heart. Nobody ever told me what this actually means as far as transplant or life in general. Hopefully, it isn't a huge deal since nobody mentioned it, but I will be asking my CF doctor about it next clinic.
During the test the nurse in the room started asking about my schedule for the day. When I mentioned I had blood work she told me that I should get the labs taken from my port. I wasn't sure the regular outpatient lab would do that so she started making calls to see if someone could take blood from my port. Finally, she told me she would walk me down to the lab, wait with me and then ask the phlebotomist if she could do the draw instead. You guys, that was so insanely nice and was the overall feel at Stanford! Everyone went so above and beyond what was expected of them and they just all genuinely wanted to make my life as easy as possible. So we went to the lab together and she drew 8(?) more vials of blood and then took out my port needle.
Lung Transplant Clinic:
After my labs were done we went over to transplant clinic. I was surprised to find other people with CF (pre-transplant) in the waiting area. In recent years my current clinic usually brings us back pretty quickly (where we still wait forever) to avoid having too many CF patients in the waiting room at the same time. Just like my current clinic we waited forever to be seen. Also, like my current clinic we saw a team of people. I had to give an overview of my medical history and any family history of diseases. I was glad my dad was there because outside of my immediate family I wasn't sure on family history as far as health issues. The social worker stopped in and said I was a good candidate from his end. I was able to skip the nutritionist because my weight is fine which saved us a bit of time.
I was told pretty quickly that I was not ready for transplant. My 6 minute walk was good, my lung function numbers are not good, but not at transplant level yet and I am not on oxygen. We went in anticipating this result, but I felt so much relief knowing that I could put transplant off a little bit longer. It does scare me a little bit though because I was told without hesitation that it is not time. I think about how low my energy is and how often I feel sick and I can't help, but feel a sense of dread for what things must be like when it is time. It is one of those times that it is better to just not think about the future and try to stay in the moment because no good will come from thinking about your inevitable decline.
Clinic was the last appointment of the day. I was hoping to feel relieved that I was almost done with my week at Stanford, but I was absolutely dreading my right heart catherization and finishing day 3 meant that I was one day closer to the heart cath.
I woke up Wednesday and turned to my husband and said, "I am over it. It was fun, but now I want to go home." I had a lot of adrenalin the first day and some of that carried into Tuesday, but by Wednesday it had warn off and I was ready to go home. But we were half way done and had no choice, but to continue on! So I put on my big girl panties and went to my first test.
Echocardiogram with Bubble Study: I checked into the echo lab around 8:45. I went back into the medical room where they had me change into a gown with the opening in the front (opposite of the norm). The nurse came to start an IV. I asked if she knew how to access ports and she said she was more than happy to use my port instead of a peripheral line. I was so happy! My port was coming in so handy! She left to get port supplies while the tech (Dr? Sorry, I had so many tests I wasn't sure who was a Dr and who was a tech) started the sonogram. It was very reminiscent of when I was pregnant, but instead of looking at a beautiful baby growing inside of me they were looking at my beautiful heart. Again, I was watching the screen, but it was a lot less fun than looking at baby feet and baby hands. All the pictures looked the same so I was only half paying attention. The tech was so warm and kind though which seemed to be a trend at Stanford!
When the nurse came back she accessed my port and we started the bubble portion of the test. They push saline with bubbles in through your IV and watch how they pass through the heart. Apparently, they are looking to see if any bubbles find their way to the left side of your heart. If they do, it means you have a small hole in your heart which apparently is somewhat common. When the nurse pushed the bubble saline into my port it traveled through so quickly they actually missed it! The combination of using a port which is much closer to the heart than a peripheral in the arm and my very fast heart beat made the bubbles travel faster than they anticipated. They repeated the test and then did it one more time while I clenched my stomach (like I was going to the bathroom) which apparently puts more pressure on the right side of your heart. I am 99% sure I failed this test, meaning I have a small hole in my heart. Nobody ever told me what this actually means as far as transplant or life in general. Hopefully, it isn't a huge deal since nobody mentioned it, but I will be asking my CF doctor about it next clinic.
During the test the nurse in the room started asking about my schedule for the day. When I mentioned I had blood work she told me that I should get the labs taken from my port. I wasn't sure the regular outpatient lab would do that so she started making calls to see if someone could take blood from my port. Finally, she told me she would walk me down to the lab, wait with me and then ask the phlebotomist if she could do the draw instead. You guys, that was so insanely nice and was the overall feel at Stanford! Everyone went so above and beyond what was expected of them and they just all genuinely wanted to make my life as easy as possible. So we went to the lab together and she drew 8(?) more vials of blood and then took out my port needle.
Lung Transplant Clinic:
After my labs were done we went over to transplant clinic. I was surprised to find other people with CF (pre-transplant) in the waiting area. In recent years my current clinic usually brings us back pretty quickly (where we still wait forever) to avoid having too many CF patients in the waiting room at the same time. Just like my current clinic we waited forever to be seen. Also, like my current clinic we saw a team of people. I had to give an overview of my medical history and any family history of diseases. I was glad my dad was there because outside of my immediate family I wasn't sure on family history as far as health issues. The social worker stopped in and said I was a good candidate from his end. I was able to skip the nutritionist because my weight is fine which saved us a bit of time.
I was told pretty quickly that I was not ready for transplant. My 6 minute walk was good, my lung function numbers are not good, but not at transplant level yet and I am not on oxygen. We went in anticipating this result, but I felt so much relief knowing that I could put transplant off a little bit longer. It does scare me a little bit though because I was told without hesitation that it is not time. I think about how low my energy is and how often I feel sick and I can't help, but feel a sense of dread for what things must be like when it is time. It is one of those times that it is better to just not think about the future and try to stay in the moment because no good will come from thinking about your inevitable decline.
Clinic was the last appointment of the day. I was hoping to feel relieved that I was almost done with my week at Stanford, but I was absolutely dreading my right heart catherization and finishing day 3 meant that I was one day closer to the heart cath.
Thursday, April 25, 2019
Transplant Evaluation Day 2
**Start here for Day 1**
I had to start the day fasting again. I know it sound silly to complain, but I know I was at a calorie deficit from the day before so I woke up really really hungry!
10:00 Esophagram: I checked in for my esophogram at 10:00. They had me change into a gown and explained the test. Then I waited for a really long time. I guess they were finishing up with another patient and it was taking longer than expected. Finally, the doctor came in to get started. I was given a cup of barium with a straw. I was told that I would be asked to take a large mouthful of barium and not to swallow it until instructed. I would then be moved into various positions and asked to swallow the barium. They were going to watch how the barium travelled down my esophagus and into my stomach. I had heard Barium was chalky and gross, but honestly it wasn't bad. It tasted like a flavorless Ensure. It is much easier to drink than the syrup they make you drink for diabetes testing!
So I took gulps of barium while standing up, then while laying on my stomach, and on my back. Then they had my lift my legs in the air, put them down and lift again. I believe they were doing this to look for reflux. I was trying to watch the monitor while the test was going on although it was at a weird angle so I only got quick glimpses. It was pretty fascinating watching the way food travels through the body.
I thought I would be excited to break my fast, but I had so much barium that I actually felt full. I ate a little something anyway because I knew my next appointment would be long.
Class For Transplant: This was a 2 hour class. I was in class with 2 other transplant hopefuls and all of their support people. It was a full house. I was nervous being in a class with other people with lung disease, but it was obvious none of them had CF and I am sure they didn't pose a threat to me, but I wore my mask anyway.
None of the information was new to me and I had heard it all before through research or being part of the CF community. But I surprisingly started to get a bit teary when they talked about donors. It is hard to think that your only chance at life is if someone else's ends tragically. It also made me think about if I ever lost my loved ones in a sudden tragedy. There is no getting around the weight that all transplants represent earth shattering loss mixed with life saving hope.
We were done by 3, but for some reason I left feeling a bit shell shocked and exhausted. Like I said the class didn't cover anything new, but maybe talking about transplant in regards to yourself feels very very heavy! I was glad that this day was shorter and we were able to go back to our Air BnB to relax and get ready for the next day.
Tuesday, April 23, 2019
Transplant Evaluation Day 1
My evaluation started on a Monday, which is standard for Stanford. It was the day I was the most stressed about because the schedule looked so full! It ended up being a very long day. We got there at 6:30am and didn't get to leave until about 7pm! I had appointment scheduled for 7:30, 9:45, 12:30, 3:30, 6:00 and 6:20. I was also given 3 tests, blood draw, EKG and Chest X-ray, to do "at my convenience." This is a detailed breakdown of my day. I wanted to include a lot of details so maybe someone in the future that has an evaluation at Stanford can get an idea as to what they are in for:
6:30 Labs: My paperwork said I needed to get my blood drawn first and foremost when we arrived at 7am and that it needed to be completed before my first appointment at 7:30. I needed to be fasting for the blood draw. We were told the lab opened at 7am, but since we had never visited the hospital before we wanted to leave early and get there with plenty of time to find the lab. We took a Lyft and arrived at 6:30. We were so excited to find that the lab was actually open. I was told by the phlebotomist that one of the blood tests ordered for TB couldn't be done until 8am (due to it needing to be incubated and that wasn't available until 8??) and that I would have to come back to get that test done. They said I could either do all the other tests first and come back just for the TB which meant I could break my fast, but I would get poked twice. Or I could just wait and do it all at once with only one stick, but I would have to fast until I came back. Food trumps needles in my life so I decided to do all the tests minus the TB with the plan to return after 8. I gave about 15-20 vials of blood and was a bit worried I may feel a bit dizzy from fasting and giving a lot of blood, but I felt fine. I also gave a urine sample. I had extra time so I decided to get a few other unscheduled tests done.
7:00 X-Ray: I tried to get my EKG done, but it wasn't open yet. So I went to get my x-rays done. It was a basic chest X-ray. One facing the screen and one standing sideways. It was the same as every other X-ray I have ever had for CF. It was super quick and easy.
7:30 Bone Density Scan: My husband and I packed a backpack cooler full of food, water and snacks the night before. I also packed my Symdeko and morning pills because the morning was so busy and we just weren't sure if we would make it to the cafeteria in time. I don't love fasting or going hungry so we wanted to make sure we had food with us. I got to break my fast after checking in for my dexa scan. Whew! Soon after they called me back for my scan. This was my first scan and I wasn't sure what to expect. It was quick and painless. They took a scan of my lower back and each hip. I had to sit still for 2 minutes for each body part they scanned. It was similar to getting an x-ray. Simple!
8:00 Blood Draw #2: We ran back to the lab to get my TB blood draw. The amazing tech left my file open so when I got to the lab I did not have to wait in the line again and was brought back immediately. One vial and I was done. Super fast!
8:15ish EKG: We were ahead of schedule and I was so happy to be cruising though my "extra" tests because I did not want them hanging over my head. Since we had time we went over to the EKG lab. We tried to check in, but they said that walk ins (which is what we were) couldn't be taken until 9:00. Since my next scheduled appointment wasn't until 10 we decided to wait it out. At 9:00 they called me back and I got an EKG. It was super simple and fast. They put some monitors on my ankles and chest and took a reading for a few minutes. The tech gave me a print out of my results to bring home. I had no idea how to read it, but it looked cool so I took it. Simple and painless.
9:45 SNIFF test: We checked in at 9:45 for a 10:00 appointment. This test was easy! The brought me back to a room with a huge bed that was standing upright (as in the foot of the bed was on the ground). I stood against the bed while they brought a machine (essentially an x-ray) in front of my chest. The tech was taking scans while asking me to breath normal. Then he took a scan(s?) while I took a deep breath. Finally, he told me to sniff 3 times while he did one last scan. Apparently, this test checks to make sure your diaphragm is working in unison and properly. I passed. I have no idea what it means if you fail or what problems it can cause in terms of transplant, but since I passed I didn't bother to ask.
12:30 Social Worker: You guys, this was a hot mess. Going into it I assumed they would ask the basic social worker questions. But the social worker came in with a packet of questions and I knew he was judging if I would make a good transplant candidate. The problem was the more (random) questions he asked the more I started to wonder if I would pass. For example, one of the first questions he asked was if I had gone to public or private school. Internally, I kept thinking, "wait, what does this have to do with transplant...does your elementary education really impact transplant??" Obviously, I was over thinking these questions, but I was starting to wonder what the relevance was. After taking a step back I think they were just getting a profile on me, but at the time the questions made me nervous as if every step of my life was being judged. The other part of the social worker meeting that made me panic a bit was when he asked about finances. We are a single family income. After we told him our income he did mention that the cost of living near Stanford (which is required 3 months post transplant) is much higher than where we live (and basically completely unaffordable for us). For reference, the average home value in Stanford is $3 million which shockingly is not affordable for us. And even though we wouldn't be buying a home in Stanford post transplant, clearly rent would probably be significantly higher than out mortgage. Considering we hope to keep paying our mortgage while we rent in Stanford I was wondering how we would possible pull all the finances off. So I was internally freaking out now thinking they are going to reject us for sure! After it was done he explained that they do not disqualify people based on income. I wish I knew that upfront! This is getting long, but the last part that I will mention is that I hate mental math. So when he asked me to count down from 100 by 7s I got nervous all over again and lets just say I will never trick anyone into thinking I am a math genius. It wasn't pretty!
3:30 Pulmonary Function: Next I had an appointment with a respiratory therapist (who was insanely nice and encouraging). We started with an atrial blood gas test which is when they take blood from an artery in your wrist vs a vein in your arm. After hearing it was painful from various people (including nurses) I was really nervous! Luckily, they gave me some lidocaine which made the test way less scary. She missed the first time and had to do the test twice to get a sample. I only felt a bit of pain on one attempt, but the other was painless. After, we had PFTs. I had to do the first one without any inhalers (I had to stop inhalers 4 hours before meeting the pulmonologist). I was having a good lung day and lucked out because my asthma can get out of control. Not taking my inhaler before PFTs was actually one of my biggest worries about the day. We did several lung functions tests which can be exhausting, but having CF, these tests were nothing out of the ordinary.
6 Minute Walk: Next was the 6 minute walk. We were able to go to a hallway where there were not any other patients which meant I could take off my mask. Whew! The took my vitals then had me walk the hall for 6 minutes as quickly as I could. I then had my vitals taken again before being dismissed. Pretty easy and painless test!
Fasting Again: I could not eat 2 hours prior to my CT scan so at 4 I started my second fast of the day.
Fasting Again: I could not eat 2 hours prior to my CT scan so at 4 I started my second fast of the day.
CT Scan: The last test(s) of the day was a CT scan of my chest, abdomen, and sinuses. They were able to use my Port so I didn't need an IV which was a huge relief. This was my first time with contrast. The tech explained I may feel a bit of a headrush and then I may have a sensation like I am peeing my pants. He told me a story while he was pushing the contrast into my port which in hindsight I am sure was a ploy to distract me from any sensations I was feeling (and maybe to monitor if I was having an allergic reaction which is very rare, but can happen). I was pretty distracted, but did feel a bit odd in the head and chest followed by a very warm sensation as if I was peeing myself. I was glad for the warning. The test was pretty easy and besides the port placement it was painless.
The End Of Day 1
That was a super long post for a super long day! Needless to say we were pretty tired by the end of the day!
Friday, April 12, 2019
Pre-Transplant Evaluation Concerns
So I spent the past 4 days at Stanford getting a lung transplant evaluation. For me, the hardest part about going to the evaluation is that every aspect of the process was a complete unknown. Despite trying though a few avenues to learn about the evaluation process (via people who have been through it) I was going in pretty blind. I am a planner. I do not do spontaneous, unknown, unprepared well. So this week was a challenge to say the least. I had eight million questions and nobody to answer them.
I did however, find a blog from someone who was transplanted in 2012 and she wrote a detailed explanation of the evaluation process. Despite her transplant evaluation taking place several years ago her schedule looked almost identical to mine. I read through her post several times as a way to prepare. And even so I had so many more questions. So I am going to go through each day (through multiple posts), but today I wanted to clear up some of my biggest concerns that I could not find addressed anywhere else.
The schedule they give you is pretty intense especially for Monday! I had 8 appointments in that single day. 5 were scheduled and 3 were to be done "at my convenience" throughout the day. My first concern was things getting behind schedule. I was really worried I may end up late to appointments or even completely miss them. I was reassured that if a test was running late we only had to talk to the front desk and they would make the appropriate calls to keep us on track. Also, every time I had a test the tech (or whoever was preforming my test) was well aware from my chart that I was booked for tests all day and they kept things running smoothly. Actually, my first blood draw couldn't be completed because I was there at 6:30am to get my blood drawn and the TB test couldn't be taken until after 8. The lab technician left my case open so when I returned for my TB I wouldn't have to wait in the long line that had formed. Every test up until my clinic visit was right on time. Of course, after clinic was a whole different story, but I will get to that later.
Some of my appointments were scheduled very close together and had different wings for checking in. I have been at the same hospital for my entire adult life and I often find myself lost in the hospital walls because everything looks the same and feels a bit disorganized. I pictured myself wandering lost and late for appointments. Stanford is the most organized and easy to navigate hospital I have ever been to. It is almost impossible to get lost. And if you are confused there are so many people more than willing to help. A janitor walked us completely across the hospital to show us where the heart cath lab was located.
Another really nice aspect of Stanford is that they have valet parking for only $2 more than regular parking. It took so much stress off of trying to find parking and walking to the hospital. It also meant my husband and I weren't separated like we would have been if he dropped me off and then left to park. The parking attendants were so nice and recognized us everyday. Side story about the parking attendant, at one point during my evaluation I stepped outside the side door to cough into my sputum sample cup because I was trying to cough in privacy. The parking attendant just happened to walk by just as I spit a huge loogie in my sample cup. At first I was horrified because...gross, but he just gave me a thumbs up and a smile. I swear everyone at Stanford was so so nice.
Overall, the evaluation went much smoother than I expected. The last day was rough, but I think that was because we ran into a few issues that I assume are not typical. If it wasn't for that last day I would say the experience wasn't nearly as bad as I had imagined. Even the tests, for the most part, were pretty easy and pain free.
I did however, find a blog from someone who was transplanted in 2012 and she wrote a detailed explanation of the evaluation process. Despite her transplant evaluation taking place several years ago her schedule looked almost identical to mine. I read through her post several times as a way to prepare. And even so I had so many more questions. So I am going to go through each day (through multiple posts), but today I wanted to clear up some of my biggest concerns that I could not find addressed anywhere else.
The schedule they give you is pretty intense especially for Monday! I had 8 appointments in that single day. 5 were scheduled and 3 were to be done "at my convenience" throughout the day. My first concern was things getting behind schedule. I was really worried I may end up late to appointments or even completely miss them. I was reassured that if a test was running late we only had to talk to the front desk and they would make the appropriate calls to keep us on track. Also, every time I had a test the tech (or whoever was preforming my test) was well aware from my chart that I was booked for tests all day and they kept things running smoothly. Actually, my first blood draw couldn't be completed because I was there at 6:30am to get my blood drawn and the TB test couldn't be taken until after 8. The lab technician left my case open so when I returned for my TB I wouldn't have to wait in the long line that had formed. Every test up until my clinic visit was right on time. Of course, after clinic was a whole different story, but I will get to that later.
Some of my appointments were scheduled very close together and had different wings for checking in. I have been at the same hospital for my entire adult life and I often find myself lost in the hospital walls because everything looks the same and feels a bit disorganized. I pictured myself wandering lost and late for appointments. Stanford is the most organized and easy to navigate hospital I have ever been to. It is almost impossible to get lost. And if you are confused there are so many people more than willing to help. A janitor walked us completely across the hospital to show us where the heart cath lab was located.
Another really nice aspect of Stanford is that they have valet parking for only $2 more than regular parking. It took so much stress off of trying to find parking and walking to the hospital. It also meant my husband and I weren't separated like we would have been if he dropped me off and then left to park. The parking attendants were so nice and recognized us everyday. Side story about the parking attendant, at one point during my evaluation I stepped outside the side door to cough into my sputum sample cup because I was trying to cough in privacy. The parking attendant just happened to walk by just as I spit a huge loogie in my sample cup. At first I was horrified because...gross, but he just gave me a thumbs up and a smile. I swear everyone at Stanford was so so nice.
Overall, the evaluation went much smoother than I expected. The last day was rough, but I think that was because we ran into a few issues that I assume are not typical. If it wasn't for that last day I would say the experience wasn't nearly as bad as I had imagined. Even the tests, for the most part, were pretty easy and pain free.
Saturday, April 6, 2019
Surprise
Sometimes I look back at my mid-20s and I think about the days that my husband and I were both working. We woke up each morning to go to our perspective jobs, both off to do important things. Joining our incomes for the first time was exciting and we were setting off to build this life together. We were young and naïve and totally clueless to how life really works, but that added to all the magic. We were playing house and figuring out this thing called life together. We felt strong and powerful and ambitious. We made plans of buying houses, having babies and making a beautiful life. The options seemed endless.
And somewhere along the line we made so many dreams happen. We bought a house and had an amazing baby. I started off working and then became a mother. I felt so lucky to stay home and raise that perfect little baby. But as everyone experiences in life, some of our hopes and dreams did not come to fruition. There were sacrifices and losses and grief, but we endured them together. And here I am 10 years later in my mid-30s looking back at the last decade and I sometimes feel a bit as if life went on and I somehow stayed stagnant. As Kaylee has grown older and started going to school full time I notice my limitations due to CF so much more. I didn't go back to work like planned. I still need mid-day naps even though my night sleep is no longer interrupted by a fussy baby. And there are more and more days that I am sick and in bed and unable to fulfill my basic household duties. There are more days my husband works and comes home to do housework and dinner and care for Kaylee while I lay useless in bed. On those days I feel like dead weight. I feel like a burden. And sometimes in the dark corners of my mind I do wonder if sometimes my husband feels a bit resentful of how much more work he puts in to keep our little family afloat. He would never utter those words out loud, but I do wonder if in the dark corners of his mind he wonders what it would be like if he married a healthy person instead.
So when I walked through my front door at 5:00 on my birthday to see my living room full of friends from all different phases of my life and heard "Surprise" ring through the whole house I felt so loved especially by the man who does the lions share in my home. He secretly had a friend who is a chef make food, and a friend who is a bartender make a cocktail. He secretly invited my friends and coordinated with my sister and mom to get my out of the house. And one of my longest standing friends flew in just for the day to take part in the celebration. And just 5 days before I was scheduled to have my transplant testing done I was so filled with love and excitement that the high carried me through the next few days. And even when I start to get worried or stressed about my evaluation I just have to think of my birthday to remember that I am loved. And when I start to feel that I am less of a wife for not bringing home and income or for having so many "bad days" I can just think about all the thought and work and love that my husband put into this party that was meant to show me how much people care about me before I step off into this new scary and unknown adventure.
The restrictions CF has put on my life can sometimes make me feel less than. I am such a different person than I was when I was healthier and working and productive according to societies standards. It can be hard to feel as if your life is slowly closing in on you and is made up of treatments and IVs and sick days when you once had a taste of living a "normal" life. But knowing I am cared for and loved just the way I am, CF and all, is forcing me to slowly redefine a successful life.
Monday, April 1, 2019
Ready Or Not
The last time I wrote I was feeling a bit lost with all the changes going on in my life and my health. I felt overwhelmed by the whole transplant evaluation and the thoughts of the future. I think I am finally feeling some peace with everything happening next week (NEXT WEEK!!!). I am starting to feel better health wise. I had a cold 3 weeks ago and I feel like I finally got over all the lasting effects from the cold, the weather has turned, and I am feeling more optimistic in general. Kaylee and I have even spent the past 2 weekends going to the park and playing badminton, basketball and volleyball. It has been so fun and her being 6 and completely inexperienced means I can keep up with her with my wheezy lungs! Feeling health enough to get outside and play with my daughter pulled me from my scared and sad state has left me reenergized and feeling more confident with what is to come.
I am absolutely still nervous about the whole evaluation and the endless lists of tests hey are going to do and how jam packed the schedule is. For someone who isn't in good health the schedule seems very rigorous. I am hoping for more energy than I usually have, that I won't get too lost in the hospital (I have never been) and that things run on time because the tests are booked close together and we all know how slow hospitals can be. I am not sure what to do if we get delayed and start missing appointments! But despite these little worries I do feel like I am ready for the tests. I keep reminding myself I have gone through scary and painful procedures before and I came out the other side okay. This won't be any different. Scary and maybe painful, but doable. There have been so many other CF patients who have done it before me and so I know it can be done.
In other news, I turn 35 this week. I honestly am not sure how I got so old! Not that 35 is necessary old (although in CF terms I guess it probably is). It is just that life seems to be going by at an incredibly quick rate. I remember my mom's 40th birthday as if it were just a few years ago and somehow here I am halfway to 40, but how could it be possible that much time has passed? I imagine it will just keep marching by and I so hope that I get to be around with these lungs or donor lungs for a very long time!
I am absolutely still nervous about the whole evaluation and the endless lists of tests hey are going to do and how jam packed the schedule is. For someone who isn't in good health the schedule seems very rigorous. I am hoping for more energy than I usually have, that I won't get too lost in the hospital (I have never been) and that things run on time because the tests are booked close together and we all know how slow hospitals can be. I am not sure what to do if we get delayed and start missing appointments! But despite these little worries I do feel like I am ready for the tests. I keep reminding myself I have gone through scary and painful procedures before and I came out the other side okay. This won't be any different. Scary and maybe painful, but doable. There have been so many other CF patients who have done it before me and so I know it can be done.
In other news, I turn 35 this week. I honestly am not sure how I got so old! Not that 35 is necessary old (although in CF terms I guess it probably is). It is just that life seems to be going by at an incredibly quick rate. I remember my mom's 40th birthday as if it were just a few years ago and somehow here I am halfway to 40, but how could it be possible that much time has passed? I imagine it will just keep marching by and I so hope that I get to be around with these lungs or donor lungs for a very long time!
Saturday, January 19, 2019
Transplant Beginnings
This was a busy week CF wise for me. As of Thursday I officially had my doctor's send a request on my behalf for a transplant appointment at Stanford. It is such a mix of emotions that I have trouble sifting through my own feelings at times. I keep trying to find blogs or info on the emotional side of listing, but it seems very few people touch on this point or at least in a way that even scratches the surface of the feelings that accompany such a huge life altering decision.
For now, I will say I bounce between so many feelings and often have several opposing feelings all at once.
I am feeling relief because at this point transplant is a security plan in case I suddenly get very sick. I feel relieved knowing that if I am in an emergency situation and quickly need a transplant at least I have the process started.
I also feel terrified in a way that I have never felt before. EVERY aspect of transplant feels scary. The testing, seeing if I am accepted, the surgery, the unknown of transplant life, the statistics of transplant survival. Petrifying.
I feel like a failure! I wasn't able to "beat CF" or "not let CF get in my way" which are common phrases in the CF community that I find damaging to anyone who finds that CF does in fact find its way to be an issue. Isn't that what CF is...a progressive disease that gets more and more in your way as it progresses. I guess slogans like, "I am learning to cope with a quality life that keeps getting diminished by CF" doesn't have the same ring except it is actually much more true to most of our journeys with CF.
I feel so much sadness. You spend your whole life knowing someday you will need to consider transplant, but you never fully prepare for that day to be today. I also feel sad that we are so very close to so many CF advances and yet it will likely be too late for me to benefit from any of them. In moments of extreme worry I worry I will get a transplant, a cure will arrive and then I will die from transplant complications.
I feel so much guilt! I feel guilt that I am putting my family through this process. I feel guilt that my daughter will carry such a heavy burden so very young. I feel guilt for how my post transplant life (mainly germs and if/when complications arrive) will burden my family, but especially Kaylee.
I feel hopeful. I love the idea of breathing well. I love the idea of no more treatments. I LOVE the idea of exercising like a real human rather than a 90 year old. I love the idea of being a person with energy and the ability to be more active in life. I feel hopeful that life on the other side will feel worth it.
For now, I will say I bounce between so many feelings and often have several opposing feelings all at once.
I am feeling relief because at this point transplant is a security plan in case I suddenly get very sick. I feel relieved knowing that if I am in an emergency situation and quickly need a transplant at least I have the process started.
I also feel terrified in a way that I have never felt before. EVERY aspect of transplant feels scary. The testing, seeing if I am accepted, the surgery, the unknown of transplant life, the statistics of transplant survival. Petrifying.
I feel like a failure! I wasn't able to "beat CF" or "not let CF get in my way" which are common phrases in the CF community that I find damaging to anyone who finds that CF does in fact find its way to be an issue. Isn't that what CF is...a progressive disease that gets more and more in your way as it progresses. I guess slogans like, "I am learning to cope with a quality life that keeps getting diminished by CF" doesn't have the same ring except it is actually much more true to most of our journeys with CF.
I feel so much sadness. You spend your whole life knowing someday you will need to consider transplant, but you never fully prepare for that day to be today. I also feel sad that we are so very close to so many CF advances and yet it will likely be too late for me to benefit from any of them. In moments of extreme worry I worry I will get a transplant, a cure will arrive and then I will die from transplant complications.
I feel so much guilt! I feel guilt that I am putting my family through this process. I feel guilt that my daughter will carry such a heavy burden so very young. I feel guilt for how my post transplant life (mainly germs and if/when complications arrive) will burden my family, but especially Kaylee.
I feel hopeful. I love the idea of breathing well. I love the idea of no more treatments. I LOVE the idea of exercising like a real human rather than a 90 year old. I love the idea of being a person with energy and the ability to be more active in life. I feel hopeful that life on the other side will feel worth it.
Sunday, December 16, 2018
CF is Weird
The title say it all: CF is weird! I went to clinic Monday and coming off a pretty horrendous cold I figured my numbers would be low(ish). I was expecting the low to mid 30s. I blew a shitty 25% which is a new low for me. And although that number is super scary low it did not represent how I felt at all. I walked 2 flights to get to clinic...I can't even do that when I am 35%. I don't understand how my numbers are drastically different than the way I feel. I knew I didn't feel like my baseline, but 25% is about as scary as it gets when you aren't on the transplant list.
Considering that number is so very low and extraordinarily scary I just knew I would be going inpatient and felt a bit devastated that I would be miss out on everything holiday related before Christmas. Kaylee's days are numbered where she will still believe in Santa and I didn't want to miss out on perhaps the last year of a magical Christmas.
And then my doctor decided to put me back on Avycaz and an antibiotic for staph which meant I would be doing home IVs. Considering everything I wrote leading up to this sentence I should have been happy with his decision, but mainly I just feel afraid. I have been on IVs 3 times since October (averaging every month!) and I just want to get better so badly. There is so much more pressure to do well when I am at home because everything falls on me. I know that even in the hospital I am the one doing breathing treatments and it is MY body that is trying to heal, but it feels like if I fail...the blame is shared between the hospital staff too. I know that sounds weird and logically doesn't make sense, but I feel like if I don't get better on home IVs I am the only one at fault (well, and CF too!). The wiggle room I used to have in my pfts have slowly disappeared over the years and I know that CF can get deadly so very quickly. I have seen it happen too many times too stay in denial.
Maybe this is a rough patch...I have had them before. Maybe this is a hump to get over to get back to my normal life. But maybe it isn't. Maybe this is a sign my lungs are too tired. I have never been the gambling type and so I won't gamble with this either. I want to be prepared if this bump turns into a downward spiral. And so with lots of tears and a long talk that went well into the night my husband and I decided we needed to start the process for transplant. I never doubted I wanted a transplant. I really do love living and I have so much to live for! How could I leave my daughter motherless?? How could I leave my husband alone on this Earth? I would do anything to live longer than CF will allow and transplant is the only chance at getting extra years.
But I never would have imagined how hard it would be to step over the threshold from "someday..." to "now" when it came to transplant talks. I feel like I failed having to admit that my journey with my CF lungs is over. I know that CF ends the same for every person and so it can't be seen as a failure, but as the inevitable, but that doesn't change the sense of failure I feel turning to the last resort when it comes to CF. I worry I am not strong enough to endure all that entails both physically and emotionally that comes with transplant. I feel sad for my lungs. They worked tirelessly even with all odds stacked against them to let me live these beautiful 34 years and I hate to see them go. I know, I know. It makes no sense to feel attached to an organ, but there is no organ in the world that has worked so hard for me than my lungs and again I feel like I am failing by choosing to replace them. I am so so afraid of what the process will do to my family. Just the thought fills me with so much mama guilt it makes my heart hurt in my chest. And what if they go through all the worry and stress and then it doesn't work?
I know none of these questions can ever be answered and the worry will never fully resolve, but I need to focus on choosing a transplant clinic that I think will suite me best. And in the meantime I need to work as hard as I can to delay the need for transplant as long as possible.
Considering that number is so very low and extraordinarily scary I just knew I would be going inpatient and felt a bit devastated that I would be miss out on everything holiday related before Christmas. Kaylee's days are numbered where she will still believe in Santa and I didn't want to miss out on perhaps the last year of a magical Christmas.
And then my doctor decided to put me back on Avycaz and an antibiotic for staph which meant I would be doing home IVs. Considering everything I wrote leading up to this sentence I should have been happy with his decision, but mainly I just feel afraid. I have been on IVs 3 times since October (averaging every month!) and I just want to get better so badly. There is so much more pressure to do well when I am at home because everything falls on me. I know that even in the hospital I am the one doing breathing treatments and it is MY body that is trying to heal, but it feels like if I fail...the blame is shared between the hospital staff too. I know that sounds weird and logically doesn't make sense, but I feel like if I don't get better on home IVs I am the only one at fault (well, and CF too!). The wiggle room I used to have in my pfts have slowly disappeared over the years and I know that CF can get deadly so very quickly. I have seen it happen too many times too stay in denial.
Maybe this is a rough patch...I have had them before. Maybe this is a hump to get over to get back to my normal life. But maybe it isn't. Maybe this is a sign my lungs are too tired. I have never been the gambling type and so I won't gamble with this either. I want to be prepared if this bump turns into a downward spiral. And so with lots of tears and a long talk that went well into the night my husband and I decided we needed to start the process for transplant. I never doubted I wanted a transplant. I really do love living and I have so much to live for! How could I leave my daughter motherless?? How could I leave my husband alone on this Earth? I would do anything to live longer than CF will allow and transplant is the only chance at getting extra years.
But I never would have imagined how hard it would be to step over the threshold from "someday..." to "now" when it came to transplant talks. I feel like I failed having to admit that my journey with my CF lungs is over. I know that CF ends the same for every person and so it can't be seen as a failure, but as the inevitable, but that doesn't change the sense of failure I feel turning to the last resort when it comes to CF. I worry I am not strong enough to endure all that entails both physically and emotionally that comes with transplant. I feel sad for my lungs. They worked tirelessly even with all odds stacked against them to let me live these beautiful 34 years and I hate to see them go. I know, I know. It makes no sense to feel attached to an organ, but there is no organ in the world that has worked so hard for me than my lungs and again I feel like I am failing by choosing to replace them. I am so so afraid of what the process will do to my family. Just the thought fills me with so much mama guilt it makes my heart hurt in my chest. And what if they go through all the worry and stress and then it doesn't work?
I know none of these questions can ever be answered and the worry will never fully resolve, but I need to focus on choosing a transplant clinic that I think will suite me best. And in the meantime I need to work as hard as I can to delay the need for transplant as long as possible.
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