Over all the week was not too terrible. I did have nearly every medical test known to man done, and about half my blood taken but I made it, starved and all! We are supposed to find out tomorrow what the decision from the transplant team is. After speaking to the last doctor (the head pulmonologist of the program, and the Chief Medical Oficer, whatever that means, though I am sure it is important) it seems like it is my time. He was telling us he thought I should get this done within the next 6 months and that I need to start preparing myself that transplant is my best option. (little does he know I am already there!) He said as soon as I'm ready he is ready, and at least mentally I am ready!
Since I typed my posts this past week on my phone I am deciding to include a walk through of my week to give more info about the process. If you aren't really wanting to know the ins and outs of transplant eval than skip on down.
Okay I am a summing the rest of you are sticking through with me to the end! Seriously now is the time to start scrolling!!!
Well now that we have that taken care of, get something to drink, pop that popcorn and pull up a chair this is going to be a long one!
Day 1 started out bright and early (7:45 east coast time to be exact) with a group meeting introducing us to the world of lung transplant. We learned all about the process and the Duke program. We also got to meet several other people who were also in the evaluation process. I really enjoyed this part as I am not used to meeting other people going through the same thing as me. In the CF world we are told to stay away from our fellow CFers. A necessary rule due to increased infection risks but not ideal emotionally. The second day I even met a man who had pretty much the same schedule as me which was so nice! It was a tremendous comfort to know at any given moment there was someone else a few rooms down going through the exact same torture, if he could do it so could I! One thing that was very interesting to me about meeting my fellow transplant candidates was how healthy I seemed compared to them. Granted I am probably at least 30 years younger than even the youngest of them but I still felt like I was not even in the same game as many of them. For one thing I was pretty much the only one who was walking, though I learned later this will be an advantage for me due to the physical requirements of transplant, and I was hardly coughing or anything, if it wasn't for the oxygen strapped to my face you would have no idea anything was wrong. This unfortunately strengthened my idea that I might not be sick enough, an idea I kept trying to convince myself was not the case and that I simply am better at not succumbing to my sickness probably due to the fact that I have been "sick" my whole life. Anyway day one was a plethora of meetings I saw an infectious disease doctor, psychologist and the transplant surgeon after the first meeting was finished. My meeting with the infectious disease doc and surgeon seemed pretty useless, except that I now know them and they know me, because neither one had any of my past records and no tests had been done yet. The surgeon didn't even examine me and yet somehow he echoed my thoughts of it probably being too early. Again I simply wrote this off as his lack of information and my mental status as "sickness denial" working to convince everyone around me, at least on initial impression, of my being totally healthy! Overall day one was a breeze and completely pleasant other than the, sleepiness. Oh yes, and the 27 vials of blood that were taken out of my body, yes you read that right it was indeed 27! And then came day 2.
Day 2 started off early with a mini panic attack as I anticipated the day to come. Luckily getting up and walking around a little was able to calm me back down enough to sleep well the rest of my short night. When the day actually began Mom and I took our lovely rented red fiesta to the Duke medical pavilion for the dreaded barium test. After being relocated to the main hospital, my name was called and it was time to let the torture begin. A barium test is a test where you are required to drink barium while having x-ray and fluoroscopy pictures taken of your esophagus and stomach. The test looks to see how well everything is working and what problems there are. It sounds harmless enough, unless you know what drinking barium is like. The barium they have you drink is about the consistency of paint, add to that a box of ground up chalk and you are getting close. This wonderful white chalky concoction is then given a sickeningly sweet artificial flavor that can only be describe as gross. Add to this the fact that it is 8 in the morning and I haven't eaten in 6 hrs and I am usually pretty nauseous in the morning, especially if I haven't gotten enough sleep and you have yourself the perfect mix for an unpleasant situation. Lets just say the barium is as nasty going in as it is coming back out. The good news is I stuck with it and did not give up even after the technician offered to end the test and tell the docs we just couldn't get it. After my fair share of barium liquid torture the ordeal was finally over and I was released for a short break. My mom was hungry so we headed over to the cafe where I had a small bit of a granola, apple and yogurt plate. I mostly ate the granola as it had no resemblance to barium. The apples had a sweetness that was reminiscent of the barium and well, lets just not talk about the thick white yogurt that was sitting on the plate. In the blog post I wrote after this test I called it possibly the worst test of them all, well the results are in and I am pleased to say my initial impression was indeed correct, the barium swallow gets the badge for worst test of hell week! The rest of the day was not horrible, though not entirely pleasant. I had a consult with a doc about my heart cath for the following day, pfts (pulmonary function tests, which are what they sound like, tests to see the function of my lungs), a few CT scans and my lovely first ever arterial blood gas! The blood gas test was definitely a rough one, but wasn't too bad. If you have never had an arterial blood draw consider yourself lucky it is about 10 times worse than a venous blood draw, I think due to the fact that your arteries are deeper and thicker than veins. This test is typically drawn from your wrist, and it was for me, at first. Unfortunatley after digging (and yes I do mean digging) around my wrist with a needle for a while my artery spasmed and stopped giving blood. After the needle was out and my world was beginning to fade (nearly passed out after this test) I learned I would have to be stuck again as more blood was needed. A few quick sips on a sugary drink in an attempt to stop myself from slipping away, another artery poke (this time in my elbow bend) and I was good to go! The rest of the day was a breeze, complete with terrible numbers on my pfts ( a desired result for a hopeful lung transplant candidate!) The day was done early enough for some free time before bed and the heart catherization (dun dun dun) the following day.
Day 3, the heart cath. I was fairly nervous about this test. In fact it was the only test I knew about early on and had pretty much been dreading it since I first decided to get a transplant. We started the day extremely early needing to be at the hospital by 7 AM (a good 30 minute drive away) After arriving at the hospital we were taken to a small patient holding room where I was given an iv and left to wait to be taken away to the cath lab. A heart cath is a test where a catheter, or small tube like thing, is inserted into a vein in your upper leg and sent to your heart. This test measures a more accurate blood pressure as well as pressure in your lungs. It can be used to test for pulmonary hypertension. I had been walked through the test by many different people and had learned it would be similar to a picc line , which is a breeze for me to get placed ( a picc is a small tube that is placed in my upper arm that goes to my heart and is used to give iv medication to me when I am in the hospital. I have gotten over 14 of these in my life time and easily have them placed without any sedation, only local numbing!) By the time they were wheeling me away I was very calm and no longer nervous about this test. Overall this test was a breeze, even with the failure of the versed, a medication given to you to sedate you and make you not remember. This has not worked for me since I was very young, and if it does anything, which requires a HUGE dose in my case, it has a very very delayed effect. I was only given a small dose for my heart cath resulting in my complete coherence during the test with only a slight dizzy feeling. Not a problem for me as I have mentioned I am used to getting piccs totally conscious. I was rather tired and slightly drugged the rest of the day though. I even took a nap when I got home and was quite out of it, asking my mom "if this was real" when she woke me up to go to the movies. After the heart cath I had an echo done, which is a heart ultrasound, this was also when my versed decided to start working causing me to become overwhelmingly tired. I managed to stay awake for the test though, as I like watching my heart show up on the screen. Both tests were done by early afternoon, allowing us to have quite a bit of free time, which was used for a nap and movie. As I have mentioned we saw White House Down which I enjoyed. It was pretty exciting and fast paced, which was good given my mental state, I did indeed stay conscious throughout the movie! I was oddly calm during the film, feelings not echoed by my mother, which now that I think about it may have had more to do with my drugged system than the movies lack of suspense, meaning the movie is quite likely a suspenseful one!
That brings us to day 4
On tap for this day was a lovely VQ scan and the wonderful, coveted 24 hr ph probe! ( I know, I know just try to contain your jealousy :P ) The VQ scan, also known as a ventilation/perfusion scan was up first. This is a scan to look at the gas flow and blood flow to the lungs. First you breath in a radioactive gas, in my case Xenon, then you have a radioactive tracer injected into your blood. The first part, the gas was a bit rough. I had a mask strapped on over my mouth and nose and was told to breath in the gas. Now I don't know about you but the idea of breathing in radioactive gas is a little world war II esque and doesn't really sound like something I want to do willingly. Add that to the fact that the mask was rather tight and made me feel slightly like I couldn't breath and you have the recipe for a lovely panic attack! I however did not have a panic attack ( yay!) but I was close and it took a lot of will power to keep myself calm through the agonizing 5 minutes of total stillness while they took the picture they needed. I think if I could have just adjusted the mask a bit it may have been better, but that was a big no no, as it would disrupt the pics and to me the sooner they were done the better. After the gas part of the test was over the mask was removed and I could breath normally again! The rest of the test was...well... dare I say pleasant? I was lying on a table very similar to the type used for a CT or MRI and simply had to lay there while the camera thing was moved all around me to take pictures from various angles. It took a while, so I simply closed my eyes and enjoyed the rest I was given after my early mornings I had been having all week. A meeting with the financial counselor was next and after that the lovely esophageal manometry and 24 hr ph probe! The financial counselor meeting was simple enough. She reviewed our insurance with us and walked us through the cost of transplant, talk about expensive, I could buy a SUPER nice house if I could just take the money its going to cost instead! We also discussed fundraising or as I like to call it Fun- D ($) raising. I am kinda of excited to do it (is that weird?) and am happy that the financial counselor suggested it. I had been talking to my mom about doing it before and she didn't seem to keen on the idea but now that it is coming from a transplant money pro she seems to have changed her tune. I am sure there will be more on this later but for now we are just starting the process of setting the whole thing up. We are in need of volunteers to coordinate events in your area so let us know if you are interested! The company we are working with will train you and provide you with support. Moving on, the last part of the day was the dreaded esophageal manometry and ph probe. These tests were very similar in procedure. Both required having a tube inserted through my nose and down into my esophagus. The first one, the esophageal manometry was by far the worst, though neither was very pleasant. The esophageal manometry (now referred to as the em since I am bored typing esophageal manometry over and over again!) test looks at the muscles in your esophagus to make sure they are functioning correctly. The tube that was inserted for this test was HUGE!!!! It was like the size of my pinky, so as you can imagine it was not fun having that shoved down my throat. The only saving grace for this test was the fact that I got to drink an ocean load :) of water! I was sooooooooooooo thirsty after being starved for the past 4 days that finally getting to guzzle a tone of water almost made up for the pain of having something that shouldn't be there forced down my nose. After the test was complete, which was like 20 minutes, the probe was removed and my nose was free for a minute or two while the next probe was prepared. The second test (the ph probe) was much less painful, this fun guy was about the size of a small piece of spaghetti. The part that kept it up to par with its big mean older bro the EM was the fact that the probe was placed and then left there for 24 hrs, yes as in the rest of the day, all night and the next day. I don't know if you have ever swallowed pills that then got stuck in your throat but this was the feeling I was left with for the next 24 hrs. I did enjoy getting to see the ph levels in my esophagus from time to time, as I was hooked up to a monitor I had to carry around that read out the numbers from the probe. A car ride home and lots of sleep brought us to the end of hell week, also known as day 5!!! (hang in there you are doing great we are almost done!)
Day 5. This lovely ending to the fabulous week long North Carolinin Vacation, brought a few meetings with docs and such as well as a liver ultrasound and the removal of the ph probe!!!! The day was not too bad, even with the fact that I still had the lovely probe down my throat. A quick side note if I opened my mouth and looked at the back of my throat I could actually see the tube, kinda weird but also kinda cool. Anyway, the morning started out with a meeting at the center for living. This is where pulmonary rehab is held. All Duke lung transplant patients have to go to pulmonary rehab before and after transplant. This is to get you in the best possible shape before surgery which will help with recovery and to help get you back to good shape afterwards which again helps with recovery and success of the transplant. I got to see the place, which looks very much like a gym, and do another 6 min walk test. My first one was done on day 2 after my pfts. I have already passed the distance requirement of the 6 min walk for passing pulmonary rehab! (you know me always the overachiever! :P ) After my mini work out session it was back to the clinic to meet with the transplant pulmonologist. The person I meet with is apparently a very high up doc in the hospital so that was kind of cool. He was the first, and only person, that seemed to think I am in what is called the transplant window, being sick enough to need a transplant but healthy enough that it is very survivable. That was mostly good news, except that right before he came in I had finally made piece with the idea that I might be returning to school this fall instead of getting new lungs. It isn't official yet, we should get that call tomorrow, but he is pretty high up so I am guessing that will be the case. That brings us to the last test, my lovely liver ultrasound (and I say that with hardly any sarcasm at all! No really I'm serious!) The test took only a few minutes, was totally non invasive and as soon as it was over I was greeted with a lovely refreshing bottle of water, which I promptly guzzled down. I had been so thirsty this final day, after my water free "work out" the tube being in my nose (this was removed after the doc visit, before the ultrasound) and the starvation that comes with hell week!
A nice bonus to this week was getting to see my grandparents. They live a few hours away from Durahm and drove up on Friday to hang out. We went out to diner on Friday and then breakfast on Saturday. For dinner we went to a hibachi place. It was fun and the food was good though I still prefer Benihana. Breakfast was super good! I had cinnamon roll French toast which was like a sweet bomb went off on my plate and then was topped with frosting and whipped cream. It was a bit of a sweetness overload but it was delicious! After breakfast it was back to the house to pack and head to the airport!
Whew that was a lot. Congratulations on making it! Oh and welcome back to the hell week description skippers! I think I need to post more frequently cuz this was just way too much at once! For now I am back home, waiting for the call from the team informing us of their decision. This should be sometime tomorrow (Tuesday)!
Mom and I at the airport
Part of the Duke clinic building. I believe this was the old hospital entrance.
I'm not drugged in this pic I swear! Due note the tube in my nose, this was the lovely ph probe.
After dinner with my Grandparents
Tata for now!