Now that I have my laptop in my room, I can give a proper update. I’ve tried with my phone several times but if a mistake was made during a long update I would lose all my work. So here it is.
First off, I want to thank Chad for getting this out and putting up updates and I want to thank you all for your thoughts, prayers and well wishes, I truly am a rich man because of all you, my friends.
This has been the most difficult thing I have ever done, from the dissension to pursue being placed on the list to the actual surgery, till now. From the time of my initial diagnosis with IPF (Idiopathic Pulmonary Fibrosis) in 2011, which in my case is/was familial.
IPF/PF is a terminal lung disease under the interstital lung diseases umbrella that has no cure. It is NOT COPD or cancer and in about 75% of the cases, they have no idea what caused it. Inhalers do not help and as the lungs become scared, more fibrotic and stiff the only help, at this time, is supplemental oxygen. This is only a band aid because it’s like having a smaller and smaller balloon to fill. I can inhale pure O2, but there was only so much to go around with each breath. Consequently, walking and even talking would cause shortness of breath because of the smaller balloons and then a dry constant cough. Not everyone who coughs is contagious BTW. But this would also cause great embarrassment since people would look at you and wonder why you were out in public while what they assumed was a bad cold or flu.
I don’t know if removing the lungs remove the disease and I’m not sure the professionals know currently either. Since I was diagnosed at the age of 50 it could be another 50 years for it to show up again. But since they haven’t been transplanting lungs for 50 years, no one truly knows. My Mother passed due to it in 2012 and my brother was diagnosed in 2016. Since my diagnosis I wanted to go on the list and have jumped through the required tests, procedures and hurtles to achieve that goal. In October 2016 I was prescribed supplemental oxygen at a low rate while sleeping since you don’t breathe as deeply to 2 liters per minute while at excretion.
My condition continued slowly until the end of winter 2017. At the beginning of mowing season, Late May in Boise, I could mow the front and back yard at one time. Soon I could only mow the front or back at a time. I received my first portable concentrator, which compresses room air and filters out the Nitrogen and gives you a “Bolus” of air which is a small puff of O2 when you inhale, July 2017. Then I could go back to mowing the front and back in a day. It wasn’t very long until I would overwhelm the concentrator and had to order a liquid O2 delivery system which could delver 6 liters per minute. Now I could get back to mowing the entire thing once again…..for about a month. Then I was back to the front or back. Just before the end of the season (Sep 2017) I couldn’t even do that. I caught the flu during thanksgiving and my numbers declined very fast. So fast in fact the transplant facility here in Dallas Tx The University of Texas Southwestern, which is ranked 6th in the nation, wanted to put me on the list. I came here in June 2017 to go through a week-long evaluation where they see if you are even a good candidate or not. On Dec 15th I quite my job and moved to the Dallas area and was placed on the list on Jan 02 2018. My wife had to stay in Boise to maintain both her job and the health insurance. As some of you know I went through several “dry runs” and a few calls asking if I would be interested in a “high risk” donor. Of the four calls I received, two were high risk and one of those I accepted, which ended up being damaged while I was on the OR table waiting to be put under. One high risk I turned down, one was not high risk, but I was standby and this last one, also not high risk worked out. You can accept or decline high risk cases but if you turn down a non-high risk it could hurt your chances on the list.
Friday morning at 10:00 am (this is my one week anniversary BTW), I was rolled to the OR table and was told everything was looking good but wouldn’t know until they had the organs in hand. I was told that the lungs are the last of the organs to be removed with the heart being first. I was soon after putting to sleep and around noon they opened me up to replace both lungs. By half past 5 they had me closed and rolled me to the ICU where they kept me under heavy sedation until Sunday morning. My wife had caught a red eye flight and arrived while I was in surgery but was not allowed to see me for 24 hours after surgery. The first time I knew anything had happened was Sunday morning, but I was so heavily sedated and on pain meds that while I could understand what people were saying I could not comprehend it. I had 4 drain tubes inserted at the bottom of my ribcage which went all the way up my chest to my shoulders for drainage, a breathing tube for breathing assistance and a feeding tube to provide nourishment down my throat and directly into my intestines. I could breath on my own through the breathing tube and it would assist if I didn’t breathe deeply enough. BTW, someone on a breathing tube can not make a sound, not even a grunt, no sound whatsoever. So please don’t ask how they are doing or anything that requires any answer except a yes or no. Later Sunday I had the breathing tube removed and by Sunday night, I was really wondering if I had made the right decision after all. Monday was not much better, but I did have two of the drain tubes removed which helped with the pain. Monday evening, I was moved out of the ICU. I was not and still not allowed to have water due to the possible damage to the trachea junction and the fear of having water get into the new lungs. I was also told that these lungs were a perfect match and that the surgeon that operated on me said these were one of the best fits he had seen in over 1000 transplants he had done. Tuesday was slow, but I was feeling better and starting to change my mind on it’s worth. Like my brother told me, by that time it’s to late anyway so just make the best of it. Wednesday was a very busy day with most everyone I could see, did see. Yesterday was similar but all the staff was extremely impressed with my ability to heal and my head way. My O2 levels maintain 100% while walking which I’m not sure I had with my own lungs when I was healthy. Today was a banner day where I had my last 2 drainage tubes removed which greatly reduces the pain level and was told I was no longer a fall risk which means I can get up and go the restroom by myself. I still have the feeding tube and will probably have it removed on Monday. I will no longer take the small thing for granted such as real food, water, showers or going the restroom by yourself, but mostly, lungs. BTW, the first thing people who knew me before notice is the color has returned to my skin. You can supply the needed O2 levels to the body but not the volume needed, so the body takes the needed O2 and for the more important areas.
I have been told from other lung recipients that they could feel the difference in size of their donor lung because you figure that you grew yours to fit you, the donor grew theirs to fit them. I don’t really notice any difference. I am now able, pain notwithstanding, to breathe deeply which I was not able to do for quite some time. I did not remember that my chest could grow so big.
This weekend will be a restful one with a possible discharge date sometime early to mid-next week, but you know hospitals, it will probably be more like mid to late next week, but it will really depend on my progress. And I will have about 20 different meds to take with me. For those of you with transplants you know just how very important these are to take daily and on time, and they will taper off during the first year.
I can’t wait to get back to the bench and now that I have my laptop back in my lap I can keep tabs on all you mugs once again. When I video chatted with Chad this morning he mentioned just how wonderfully blessed we are to have friends like you on the forum. I could not agree more!!
I realize this was an exceptionally long post but wanted to cover all the bases. Some of you have been following from the start, and for some, this is the first time to hear. This is a terrible disease which you don’t see from the outside and like I said earlier, there is no cure and it will kill you if nothing else does. A little puff of meds can’t fix it, then go back to play some gulf. Saying things like “I hope you feel better” is a total misunderstanding of this condition. You never feel better unless you are one of the lucky ones like me, yes, I have totally changed my mind now, I knew I would.
I promise my next post won’t be nearly as long.
Steve