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...
Friday, May 10, 2019
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.
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