Transplant: Day 16

On Monday, November 17, 2014, Maggie was discharged from Stanford Hospital. The photo below, in which she is shown sporting this season's 100% HEPA filter mask, was taken outside the main entrance of the hospital as we were getting into the car. It was quite an emotional moment, to be going home just 12 days after her double-lung transplant surgery. During that time she spent 1 day in the Intensive Care Unit (ICU) and the following 11 days in what is called the Intermediate ICU. The ICU has a 1:1 nurse to patient ratio, where as the Intermediate ICU is more like 1:2 or 1:3, still with close monitoring. Her initial recovery progress was extremely fast, then towards the end it slowed down as we waited for the last remaining chest tube to stop draining so it could be removed. Maggie received such wonderful care from all the staff at Stanford, I really can not thank them enough for looking after her so well.

Discharged On November 17, 2014

Coming home has been a lot for Maggie to take in. In many ways her mind has still not had a chance to catch up with what her body has been through over the last 2 weeks. Maggie now has to learn how to use her new lungs and is still trying to figure out what "normal" is meant to feel like. We have been instructed to call Stanford immediately if anything seems wrong or concerning. Of course, it is difficult to know what is a problem and what is just part of the healing process. In these early days, the best policy is to call if in doubt, even if just to be reassured that everything is fine.

Maggie asked me to talk about her anxiety as she has been finding the transition harder than she expected. Of course, there is joy in receiving such a wonderful gift of new lungs, and yet there is also some sadness and anxiety at such a sudden change in life. Her breathing treatments, which she used to do religiously 3 times a day, are no more. All her equipment has been decommissioned and her treatment chair is no longer a place she must sit and spend hours of every day. Her treatments have been her lifeline and security blanket for so long and now they have been taken away from her, with barely a moment's notice. It's perhaps hard for healthy people to understand, but Maggie has never liked change and this has been a monumental change. She also struggles with giving up control. Before the transplant, she was totally in charge of her medications and treatments, and was more likely to be bossing the doctors around telling them what she wanted rather than the other way round. Now, she finds herself having to give up some of that control and trust others to make decisions and tell her what is what. I'm sure this will change with time as she becomes more confident, but it's a big change for someone so used to managing their own healthcare.

So, out with the old and in with the new. You are probably wondering what replaces all these treatments that she has spent years doing. Well, it's quite simple in some ways ... pills. Lots and lots of pills! The photo below shows a day's worth of her current medication regimen, excluding enzymes which must still be taken with food, as before transplant. The top row is taken in the morning, at 9 am, the middle row at lunch time, and the bottom row in the evening at 9 pm. The most important of all of these pills are the anti-rejection medications. There are 3 different types and they must be taken on time. Our bodies will naturally try to reject any foreign object placed inside and a pair of someone else's lungs definitely constitutes a foreign object. These medications suppress Maggie's immune system heavily to trick it into accepting her new lungs. Over time, some of these drugs can be reduced in quantity, but initially the doses must be quite high. As a result of this immunosuppression, Maggie is much more susceptible to colds and infections. This is why she must wear her mask outside and around others for at least the first 3 months. If you are currently sick, have been sick recently, or have been around sick people, please stay away!

Daily Medications Post-Transplant

Aside from the new medication regime, of utmost importance is exercise. Maggie is exhausted from sleepless nights in the hospital, and yet this is no time to be sitting around. The goal is to exercise her new lungs as much as possible, helping them to expand and to clear out any remaining blood clots or mucus left over from surgery. It is a slow process but each day she seems to be getting slightly better. Kerry and I are taking care of her on a daily basis and part of our role is to get her up on her feet, going for walks and climbing stairs. It is a fine balance, as she is tired and I'm sure would much prefer to be left alone to sleep or rest. A new mentality is required compared to before transplant. With those old lungs and 24/7 oxygen, she had every excuse to sit around and take it easy. But now it's about pushing herself because that will help with recovery in the long run. At some point soon, she will be going to a pulmonary rehabilitation program in Redwood City. The steroids she is taking cause muscle loss, so she will have to work extra hard to preserve and hopefully gain muscle mass.

So for the coming days, Kerry and I are Maggie's caretakers. Typical tasks include : taking vital signs (weight, blood pressure, pulse, temperature) every morning and recording it, preparing medications for her to take (making sure she is getting the right pills at the right time!), taking her to early morning clinic at Stanford twice a week, taking her for several walks a day around our neighborhood, cooking, cleaning, driving, laundry etc. At each clinic visit, blood must be taken to monitor her anti-rejection medication levels, with adjustments to her dosage if necessary, a chest x-ray is taken, and finally meeting with the doctors and nurses to make sure everything is on track and going according to plan. With time, these clinic visits will reduce in frequency. Speaking of chest x-rays, I wanted to share this photo with you. On the left, is before her transplant back in September. On the right, is during her recovery in hospital last week. In the right hand shot, you can see one of the chest tubes which was still in at the time, as well as some of the metal wires holding the two sides of her chest together. Yes, her sternum was cracked right down the middle, so it is understandable that she is feeling some pain and soreness! I'm by no means an expert in reading x-rays but I'm told that the white parts you can see in the lower half of her lungs in the "before" shot are not good and explain why she was so out of breath before her transplant. Black is good and means the lungs are clear, and there is a definite improvement in the after shot. This new shot is already a week old and I'm sure the fresh one they took yesterday is looking even better.

Chest X-Ray : Before & After

OK, this is turning into a mammoth post, I'm sorry but there is a lot to say! I'm sure I have forgotten important things to mention. If you have any burning questions feel free to post them in the comments section and we will try to answer them. Maggie says she will make a post of her own soon, but right now she has enough on her plate so I continue to be her designated blogger! Please continue to pray for her, that she may overcome her sadness and anxiety and focus on her new life and all the wonderful things she will be able to do.