Rima and I didn't really sleep well Sunday night. Leaving the Airbnb we were both buzzing with anticipation. We arrived to MNU on time. Parked and walked a block to MNU Health Clinic and Surgery Center. As we strolled into the building we saw a few people wearing maroon and/or white shirts holding tablets, either looking for people to help or assisting some. We were approached by one such tablet person. They signed us in for her first appointment of the day, blood tests. We waited outside of the very large waiting room where there were less people. We watched these tablet people greet and check in newcomers. I wonder if they have a quota to meet each day, it sure looked that way.
While we were waiting Megan, her Transplant Coordinator came to meet us. She is super nice and very helpful. Rima and I are both huge Megan fans.! Yes, she has a Minnesota accent which makes us even bigger fans, ha! She spoke to us about the schedule for the day and clarified on a few things, locations, rooms and people. She then gave us a few recommendations of restaurants. One specifically, Pizzeria Lola which she informed us was on Diners, Drive-ins and Dives. Sold to the two pizza lovers!
The lab or we can just go ahead and call them what they really are, the vampire department was running behind, we got called 45 minutes after our scheduled time. Normally fine, that's kind of standard at hospitals. But not when you have a very time specific schedule to keep too. We went back to a small cubical and met our vampire technician. He had a lot and I mean a lot of empty tubes in front of him. I joked "Oh, Rima they're going to take all your blood, muahahaha!" The vampire laughed and went along with it. I was joking, not thinking all these empty tubes could actually be for her. Nope, I was wrong. Tube after tube, after red, after dark red, after super dark red. What is she feeding a small family of four with her blood or something?!
We were in the lab for at least a half and hour. Vampires are not fast contrary to popular opinion and True Blood. She gave 25 and a half vials of blood. They are so greedy, just kidding... After that they gave her this super sugary drink to chug and chug fast. It's called a glucose tolerance test. It 's to measure the glucose levels an hour or two after you finish it. Yes, mooooore blood! Rima was having a hard time chugging this drink. She was commenting on how gross it was. "It tastes like flat orange soda with a lot of added sugar and it's warm!" I had to try it so I took a small baby sip. Spot on the nose Rima, with the description. I think it would have tasted better with some ice. She almost got 3/4 through it and then started to have a massive cough attack. Shit, shit shit! If she throws up which she was convinced she was going to, she would have to drink the drink all over again! Rima, the trooper she is held it in and got through it, phew!
After the vampire finished collecting his meals we were about an hour behind schedule. She had a Dexa scan to get to,and quickly. A Dexa scan is a bone scan to basically check for Osteoperosis and such things (weak bones, calcium deficiency). The tablet people were super helpful and helped push things along for us. Rima completed the Dexa scan and the chest, hip & spine X-rays. After, she went back to the vampire department and gave them two more vials of blood. We were almost back on schedule. The next appointment was super important to Rima and me. It was for a transplant support group. This was when we would meet with other pre and post lung transplant patients(but no actual CF patients). PEOPLE TO RELATE TOO! You have no idea how welcome this was.
Rima was the youngest in the room by at least 30 years. Most of these people had grandchildren. The group consisted of pre and post transplant patients with a support member like a caregiver or close relative, about 20 people in total were in this room. Rima introduced herself and gave a little rundown of why she was there. There were a couple other new comers also. I'm going to shoot myself in the foot right now but I think it's necessary evil. I want to say about 3/4 of the patients were in this situation because of COPD also known as chronic obstructive pulmonary disease. In short, because they were smokers, they needed new lungs. I was shocked to find out that there were so many there and so was Rima. Here she was because she was born with a disease. Our family had been trying to avoid this situation for years and years and here we were in a room with people who had, sorry not sorry, brought this upon themselves. I was just kind of surprised because we thought we would be with people who had been suffering from another disease all their lives and fighting this, but there was only 1 - 3 other people in the room like this. I'm going to stop writing about this now, before I say something someone will take personally but if you smoke or know someone who does, stop it....just fing* stop it. I've said my peace...
We learned a lot in this group, it was very interesting hearing from others, what their fears were or what had been their difficulties in the process. There was only one other person in the room for Cystic Fibrosis, but it was the caregiver of the person with CF. After the group we got a few contact emails so we could ask additional question later. We had a quick lunch and then sped off to another super important meeting with her new Doctor for the transplant at MNU. Dr. Dunitz who is a pulmonologist. The meeting lasted about 2.5 hours, it should only have been 1.5, we asked about 40 questions. Dr. Dunitz walked us through the rewards and the risks of the transplant. He mainly spent his time on the risks or all the junk that can come with it. A very quick rundown would be that there are 4 types of rejection. Everyone experiences at lest 1 -2 types....no matter what. Everyone has complications. Everyone goes through bad days and good days. This was something Rima and I had read about but were not aware that everyone goes through some sort of rejection. Usually multiple issues arise when it comes to double lung transplants. Not only that but put CF on top of it and you have a super tricky recovery, a majority of the time even the smallest change in activity or health can be a sign of rejection.
Finding the perfect balance of anti rejection drugs and not completely destroying a persons immune system is something they are still working on. She will be in surgery for about 6-12 hours and then be in the ICU for a few days until she is good enough to be moved to her recovery room. She will have 5 tubes in her chest draining excess liquid that will come out one at a time, when it's safe. She will have a breathing tube in the mouth for the first 48 hours after the surgery. She will be so dosed up on drugs that she probably wont remember the first few days after. She will be in the hospital for 7-14 days after if all goes well if not then longer. After she is discharged we will have to live within 30 minutes of the hospital for a full 3 months. Returning back to MNU 4-5 times a week for appointments. She can not be left alone for the three months, meaning for me to leave the house I would need someone there to keep an eye on her. Yes, a full time baby sitter. Cabin fever here we come!
Survival rates for the first year after the transplant at MNU is 85%-90%. Survival rates after 2 years is 80%. Survival rates after 5 years is 65%, after the 5 year mark it levels off. Dr. Dunitz said that one of the longest CF double lung transplant patients has lived 15-16 years after surgery. We asked what the deal was with second double lung transplants. He said that they do happen but they are rare. You basically have to be in perfect condition to be able to survive the second surgery. Lots of factors have to line up perfectly for this to happen and they don't prefer to do it unless they are very comfortable and sure they can have a successful surgery and post care.
Both our heads were spinning after this meeting. We were exhausted from the day! We had one more meeting with the blood clot team. Rima had one back in 2012 so they wanted to make sure this would not happen during or after the surgery. That meeting was quick and easy. We left the hospital around 5pm. Phew, what a day!!!
We ate dinner at the restaurant Megan had suggested. Pizzeria Lola and what a great suggestion it was! Rima and I both got pizzas and chilled for a hot minute. We then drove to Trader Joe's to get some food for the rest of the week. Rima was having some phone issues so we also had to go to the AT&T store. Needless to say we were walking zombies by 7pm. We got back to the Airbnb and collapsed on our beds. I self medicated myself just incase sleep was going to be an issue. Alarms were set for 5:30am. Tomorrow was going to be another full day of new lessons and eye opening facts. Buckle up kiddos this is going to be quite the ride!