Posted on April 13, 2015
Posted on April 13, 2015Sorry for the long absence...much like last transplant, we needed a break to recover, regroup, and rest after leaving the hospital. It's been about 9 weeks since Brians transplant, and everything couldn't be going better. Saturday was the 17th anniversary of Brian's diagnosis and also his LAST day of insulin! Over the last few months, Brian's transplant team was seeing better than expected results from the transplant (normally it takes two successful transplants to be fully off insulin) so they started a weaning process, cutting back B's insulin intake slowly, causing his new islet cells to 'wake-up' and start working. They do this process very slowly, so no islet cells get stressed or overworked, causing them to die early on.
His doctor quickly realized that his meal time insulin wasn't needed, so they dropped it completely about 6 weeks ago. Brian has still been very careful of his diet, not going crazy eating too much sugar or starches, and his body responded perfectly. It's been so nice to not have to calculate carbohydrates and figure out insulin ratios at every meal. Brian says all the time that it feels like a big weight was lifted off his shoulders. They kept him on his long acting insulin to 'help' the islet cells out for a bit, but at every appt for the last few months, they slowly cut back more and more. Last week, the Dr. gave him the all clear to take his very last dose of insulin on Saturday, exactly 17 years after he received his very first dose of this life saving drug. It was surreal to watch as B drew his last dose of insulin, something to that has been such a big part of our family for so long, and then finally say goodbye to it. We did calculations and Brian has given himself roughly 45000 shots and 30000 finger pricks in the last 17 years. And that's on the low end of the spectrum. His stomach, arms, fingers, and legs desperately needed a break from all the poking- they built up so much scar tissue, these small shots became very painful over the last few years.
After the last dose of insulin, our transplant team warned us that it's not uncommon to see a couple days of higher sugars as his body adjusts, and to not freak out (they were talking specifically to me about the not freaking out part :) but so far, nothing. Almost no change at all. Thanks to his continuous glucose monitor that he stills wears, we've been able to see his sugar go slightly higher during mealtime, but those new islets quickly work to bring everything back down to normal. We are still in shock everytime he eats. Living with this disease 24/7, you don't realize how much it takes over your life, your worries, your meals, trips out, and sleeping. Everything is different with type 1. Brian handled it better than I ever could, but it still was very hard on him all the time.
Lots of people have asked about the meds Brian is on now post transplant and what his aftercare looks like. For the rest of his life, or the length of his islet cells lives, he will have to be on immunosuppressants. He takes two different forms of immunospressants, which totals about 8 pills a day. On top of that, he came home from the transplant on anti fungal, anti-bacterial, and anti-viral medications to protect the new islets and Brian from getting sick in his weakened state. Those medications will slowly be tapered off, but for now he takes about 15 pills a day. Despite all that medication and a weakened immune system, Brian feels immensely better since the transplant. Unstable sugars from type 1 wreak havic on the body often making the person feel really crummy and tired. Since his sugars have been more stable, Brian has noticed a big difference in the amount of energy he has. He has experienced some not so great complications from the medication, but his doctor works quickly to make sure it can get straightened out as best as possible.
From here on out, Brian will continue seeing his transplant team about every two weeks to a month for blood draws, to check his levels and make sure his body isn't trying to fight off the new islets. There is always the chance of rejection, and given what happened last time, Brian's doctor is extra careful. Next week is a huge mile-marker in the transplant world. It's B's 75 day post transplant mixed meal test. This measures exactly how well his new islets are producing insulin and how well his body responds to a high sugar intake. Normally this test would leave Brian's sugar sky high and him not feeling well, but since this transplant is so successful, we are expeciting it to go smoothly. We are still very excited, and nervous, for the results.
We aren't in the clear with everything yet. Since the transplant, Brian has still experienced a few minor hemorrhages in his eyes due to Diabetic Retinopathy. We have been warned that things may get worse before they get better, but we are hoping this transplant quiets down the disease threatening to take away his eyesight. It's a terrible disease, and the leading cause of blindness, so want so badly for things to settle down and give his eyes a break!
So for now, we just continue with the doctor appointments and medication as planned, hoping that everything continues to go smoothly! Thank you to everyone for their well wishes, donations, hugs, words of encouragement, shares, and support. You have helped, and continue to help us immensly. Without your support, these two transplants would not have been possible. It take a lot on a family mentally, physically, and financially to go through a transplant, and so many of you have helped in so many ways to make our lives easier. It has meant the world to us. This journey is far from over but at least we can see light at the end of the tunnel!
Posted on February 13, 2015
Posted on February 13, 2015Brian has been doing well and tomorrow we get to come home! We are so excited to get to sleep in our own bed, and most importantly-have our whole family together! We've missed Teagan so much and can't wait to see her again. Brian completed his Mixed Meal Tolerance Test today, which measures if his body is producing insulin. It's not a fun test because they have to spike his blood sugar, but he handled it well and the time passed quickly. We just spoke with the doctor and received the results. They were...okay. Not the best, but definately not a failure. The Islet Cells Brian received have definately took, but there may be some time before we fully see the benefits. Before the transplant when Brian did this test, his sugar spiked at around 350. This time, his highest reading was 205- still very high, but not severe. His body is producing insulin, measured by a C-Peptide number, and having ANY number is good. This means that Brian will be protected from low blood sugars, which are very dangerous, and can cause strokes, etc. without warning. He may still be on insulin at the moment, but at least low blood sugar is no longer a worry. And as we know, things can change. His immunosuppression level is very low because they had to up his anti-fungal medication due to the donor having an infection in his lungs. This highly suppressed level can cause the C-peptide level to be lower, so that could be another contributing factor. So now we go home and wait. It's not uncommon for things to get better in the weeks to come. Brian and I will be back here every other day for a few weeks to monitor his progress and get his medication levels checked and stabilized. We are hopeful that things will continue to improve, but even if they stayed where they are, it's still way better than before the transplant. Brian is having an easier time controlling his sugars and is even on a little bit less insulin. We are excited to get home, have some much needed family time, and see where things go from here.
Posted on February 12, 2015
Posted on February 12, 2015The past few days have been a roller coaster of emotions, so bear with me as I try to update about them all! Yesterday was a big day in terms of measuring the success of the transplant thus far. Brian had his antibody level checked to see if his body was 'fighting' the new cells. This nerve wracking test takes all day for the results, and we were on the edge of our seats all day, but thankfully everything came back negative!
Even though all looked good, we are not out of the woods yet. Brian is scheduled to have another big test Friday which measures if his body is producing insulin (type 1 diabetics don't) Brian will drink a sugary drink, then his sugar gets tested every 30min to see how his body is reacting. When he started this transplant journey, this test left Brian with extremely high blood sugar and he was very sick (They have to do is as a baseline) since his body can't produce insulin.
On top of being nervous about the blood test yesterday, we were informed that the Infectious Disease team was going to pay us a visit. Cue freak out from pregnant wife here. Apparently, they found a fungal infection in the donors lungs and because Brian received his pancreas, extra precaution had to be taken. Although it was a worry, everything turned out to be fine. No fungal infection was in the pancreas (they test before transplant) and it's protocol for Brian to be on anti-fungal medication for months after the transplant anyways. Still worrisome when you hear the Infectious Disease team has to pay you a visit!
To end our wildly emotional day yesterday, some good friends paid us a visit and brought a huge surprise. A bunch of moms (and dads) from a Facebook group I'm a part of rallied together and raised money for us to help with all this. It left Brian and I a balling mess in front what seemed like everyone at U of C. To be supported by so many people, many whom we've never met or barely know, on this journey has meant so much to B and I. And we couldn't be more thankful.
As if yesterday wasn't hard enough, today we received news that Brians blood work showed some internal bleeding. Cue pregant wife freak out #2. Brian's doctor rushed here right away and was convinced that this wasnt true. He ordered more blood work and sure enough, no internal bleeding. Whoever drew the blood the first time probadly left it out too long, skewing the results of the test. Internal bleeding, although it can happen, is very rare in this type of transplant. We were thankful that all turned out well.
When Brian's doctor came to visit us today, he offered to show us some video from the actual transplant. They have footage of them accessing the portal vein, which is the vein connected to the liver where they insert the Islet Cells. It was very neat to see, but while we were talking, he asks through a chuckle if Brian remembered the whole transplant like he did last time. (Side note: patients are only put under twilight for this transplant. There is no 'cutting', only placement of a port into a vein, so twilight and a local anesthetic are all that's needed.) Then he asked if Brian remembers when he stopped breathing!!!! Cue final freak out from pregant wife. At first we thought he was joking, but we quickly realized he was serious. Apparently, when they first started inserting the port, Brian screamed out in crazy amounts of pain, and they had to stop and give him more sedative/anesthic. All this sedative caused Brians breathing to slow WAAAYY down and for a quick moment, he stopped breathing. They were able to shake him to start breathing again pretty quickly, but it was super scary to hear all this. I'm so thankful Brian is surrounded by the best transplant team and they are always on top of their game. Our doctor always says that in a normal world, in a normal situation, 2+2 will always equal 4. But in the medical profession, especially dealing with transplants, one day it may equal 4, the next day 7, and the next day 3. You just never can predict these things. One things is for sure: this guy is a miracle. He is, hands down, the best Dr. we've ever met, and its clear why he's one of the only doctors in the country doing this type of transplant.
To end this all on a high note, I want to urge you to like a Facebook page our friends have created for us to raise awareness for this site and to cheer us up while in the hospital and during Brians recovery. The page is called Donut Selfies for the Meeks Family. Why donuts? Head on over to the page to find out! Basically, they are urging people to take selfies with a donut and post it on the page for us to see during our stay and directing people to this website to share our story. The link is: http://bit.ly/donutselfies. We'd love to see your photos! Please share and spread the word!