Update from UWMC our Home away from Home

    Hello All. This is from Keith. I think many are keeping up to date via Face Book but Emily wants to keep this Blog a bit more current. My last post was at the end of August. It is now September 26th.(now the 27th ran out of steam late last night) We are back in Seattle at UWMC and have been since last Wednesday. There was also another three day trip to UWMC in mid month. We may be here through the end of the first week of October depending on tests this W-F that will help determine if another surgery is indicated on the 4th.

    The last month has been very tough for Emily. We returned to Eugene after the sinus surgery and she had to endure a truly horrible multi day migraine. This set back her recovery dramatically.  The last few weeks she has experienced continued reduction in lung function and profound nausea, weakness and fatigue. She requires oxygen 24 hours per day and needs to use a wheelchair to get around, even at home inside the house. This trip was to be Wednesday the 21st through Friday. This was a post op check for the sinus surgery and a meet and greet with a new GI surgeon. Unfortunately on Friday Emily was too ill and weak to travel back home. (These trips back and forth are a pain. The traffic is a nightmare and managing O2 and the chair make us a bit of a circus act.) Things didn't get better over the week end and on Sunday Emily had to go to the ER. She was dehydrated and exhausted. She was admitted that evening and remains at UWMC. She has received a lot of fluids via IVs. She is definitely feeling better but there is no discharge date yet as she needs to get stronger. All of this is compounded by the reduced lung function which makes just plain old breathing serious work. If strong enough she will have a 48 hour PH study to determine the extent of acid reflux, this will be on Weds the 28th. This is a procedure that places a device in the esophagus to measure what is going on. While the procedure is pretty straight forward it does require anesthesia which is a concern with her current lung function. Depending on what is observed Emily may have surgery on the 4th  on her stomach to hopefully stop the reflux from occurring. This is a major surgery and again full anesthesia. There is quite a bit of caution at the moment. The most basic first step is for Emily to recover enough strength to be a reasonable candidate for surgery. Then we go from there weighing the risk vs benefit. Difficult days. Hopefully, tomorrow Emily can begin some very basic PT. Simple walking with assistance. Was to start today but just needed to rest. The reason for the sinus and stomach surgeries is to stop post nasal drip and acid reflux. That doesn't seem like the biggest deal but in the world of lung transplant it is. These things can spark forms of rejection. That is the working theory on the decrease of lung function.

   Even though this is not a vacation Seattle is a beautiful place. Emily recalls fondly the several years she lived here. From the wing where here room is the views are special.  One way is Huskie Stadium with the lake just behind. The other way we look down on the Montlake Cut and can see the racing shells training.

    It is now mid morning of the 27th. I am  at UWMC with Emily and Peg is back at our room. She stayed  at the hospital last night. We take turns.  It was a rugged early morning with nausea and dry heaves. There is an unexplained pattern to the days. The very early hours tend to be just plain bad with the nausea then an exhausted sleep of many hours followed by several hours of feeling good into the late evening. In the early part of the day no appetite and then a good one. Got the medical folks stumped on why this occurs.

   So these early fall days are special around our house. We usually go out for a family dinner to a favorite place. Most often Chefs Kitchen.  Today is Peg's birthday and Thursday is Emily's. I think we will do something extra  to celebrate this year once we are back in Eugene.  I will post this now and hopefully make the link to FB. Please let other friends know so they can be up to date. As always it is great for to hear from folks on the comment section here or Emily is on Face Book a lot. The days and nights get long and any distraction is welcome.