Thursday, April 16th - Update
Just had a long talk with Dr. D who was on mom’s service this week. Buckle in, it is a long one.
They knew the risks of mom surgery prior to transplant, the left lung had intensive scarring and infection which would lead to a riskier transplant and recovery. When they got in there it was worse than they expected. There was a lot of infected tissue in the lung and in the chest cavity which meant lot of tissue removal which meant more than expected bleeding. They have taken her back multiple times since the surgery to do a lung wash and remove blood / debris in the chest cavity but the stress on that area has created added problems.
The concerning issues are:
⁃Impact of how well the diagram is working
⁃Left chest / lung
⁃Heart rhythms
⁃Blood clots
The diaphragm is not working well which impacts everything. The large amount of scar tissue from the transplant puts a lot of stress on the nerves that provide support to the diaphragm / breathing muscles. This is a slow process to heal and the primary reason she is still on the ventilator.
The general impression of the right lung is that it is healthy and looks good on both the inside (during the bronchoscopy) and on the x-ray. However when they lower the pressure settings the lower middle and bottom lobes collapse. This could be partially due to the fluid build up (from the weak diaphragm). They are solving by letting her stay on the vent while the muscles get stronger as well as doing more draining. The chest tube should help along with being more aggressive with suctioning and bronchoscopy procedures. They need the bottom lobes to stay open and clear, if not they might not recover. This all means they will be keeping her on the ventilator, even if it’s on a lower setting longer term as they monitor the strength of the diaphragm.
Left side is struggling, and not healing as well as they like. Despite multiple lung washes, the left lung is still not expanding fully and the chest cavity still has a lot of debris (dried blood blood, scar tissue, fluid etc). Every time they take her back to the OR it seems to set her back a bit due to the intensity of surgery. The surgical team are now extremely hesitant to take her back into the OR and don’t want to manipulate the left chest any more than then need to. Long term the body can absorb the debris but it is hard to know if that will happen.
Heart rhythms are very common post transplant. Typically they are manageable and recover as the patient progresses post surgery. The blood clots are more problematic because they mandate that she is on blood thinners which raises the stakes and mean a higher risk for bleeding. High risk for blood clots is common post transplant and they see patients’ clots resolve later down the road.
So treatment will be focusing on recovering and keeping the right lung (both are important but especially the right) open and clear with frequent bronchoscopy procedures and breathing treatments. The left lung may not last long. Dr. D couldn’t give specific times but did an estimation (obviously this can change any day but as of now). Best guess is that the left lung may not recover. This could take 2-3 months to decide. In these situations is could take a few months for the body to resorb the debris in the chest cavity on its own and for the pneumothorax to heal. If that has not resolved by then, it could be a problem long term and cause to remove the lung. This is not a terrible outcome as she can live with one healthy lung for a long time.
Right lung is healthy and promising. They will give it lots of TLC, suction and bronchoscopy as they gradually try to reduce the pressure settings on the vent. They will be monitoring her lungs on the x-ray but also on how she feels as she is very in tune with how her lungs are doing and can tell when something is wrong.
Timing depends on how long it takes her respiratory muscles to recover, this could be months or weeks. However the trajectory was improving this week. She will probably need the ventilator for a couple of weeks longer to guarantee that the lungs full expand. It will be a combination of how she looks and does and how the bottom of the lung holds.
Dr. D feels that this will be a long road but that she still has a fair chance of a positive recovery. He felt that she has a strong positive mental attitude but that it was necessary for the weeks ahead. He also acknowledged that it was more than sucky that we can’t be there in person and that it is super important she continues to feel supported as things may get tougher in the coming weeks.
Bottom line is we want no infection, no rejection, recovery of the diaphragm, recovery of the right lung by preventing collapse and mucus build up.
(water color by Karine)