Bad Blogger

Howdy Folks,
I am a terrible blogger. There are too many social media forums to keep up with. With limited energy I settled for Facebook and Instagram because you can post on them at the same time and I only have to typ all the information once. I know this leaves some folks out who don't use those forums. I am sorry; I value you your support and want to keep you informed but I just don't have the energy to blog and keep up with emails too.
So this blog is still alive and "active"....just on hiatus for now. Hopefully as I get stronger and will have the energy to get back to blogging.
Thank you for all your love and support.
-Emily

General update 5 weeks post-op

I had an appointment with my local pulmonologist today; overall it was a good visit. I have been running a low grade fever for the past few days and developed a dry cough and I have not been sleeping well. I had a chest x-ray today that showed an infarction in the upper lobe of my right lung; all of that added up points to a low-grade bacterial infection. I will start with a weeks worth of an oral antibiotic and then recheck with the doc next week. The good news is that my lungs sound really clear! No crackles, wheezing, or constrictions; and overall the chest x-ray looks good except for that one spot. It sucks to have one more thing to deal with, but honestly I am surprised I haven’t picked up a bug yet through all of this.

Even with this new infection I am actually feeling a bit better overall. I am recovered from both surgeries; everything has healed up nicely. I’ve got some nice new scars; five to be exact, all a half inch or less scattered around my abdomen. I still have the random giant bloody booger make it’s way out of my nose from the sinus surgery, but after the initial hell my sinuses have recovered and that operation has been very helpful in regards to breathing and sinus headaches/migraines. We are still trying to sort out the violent dry-heaving. Knock on wood, the heaving episodes have lessened, I have even had a few days without any heaving.

Today we also got the most definitive diagnosis anyone has been able to give us: Viral Induced Rejection; meaning I had some sort of low grade long term viral infection that triggered my immune system into overdrive causing a sort of attack on my transplanted lungs resulting in the reduced lung function. This fits with the overall trajectory of my health the past year; I had a lot of idiopathic symptoms that never fully presented themselves or lead to a real illness or problem. Sinusitis, allergies, stress…many things were tossed around but that is the trouble with rejection; it is very sneaky.

The official term for what is happening in my lungs right now is bronchiolitis, which is a fancy way of saying inflammation in the small airways. “Rejection” is used lightly here; there are multiple types of rejection and the positive side to this scenario is that recovery and regained lung function are very possible. There are no guarantees, but all the pulmonologists we have spoken with are optimistic that we can hope for recovery. That is a very long road; I don’t know how long I will have to be on oxygen or when I will be strong enough to begin pulmonary rehab. My personal goal is to be off oxygen by spring; I don’t know yet if that is realistic or not.

Right now it’s just rest, rest, rest, and eat. I have lost about 20lbs and all my strength; picking up a full pint glass of water is taxing. Walking down stairs makes my quads shake because they are so weak. All the medications have made my hair really weak and brittle and I have a weird rash on my chin. It is difficult to shower or get dressed by myself, and I am heavily dependent on my wheel chair because I fatigue so quickly trying to walk around. Having your physical independence taken away so drastically is incredibly frustrating. Thankfully I have awesome parents who have fully devoted all their time and energy to caring for me. My mom has taken Family Leave from work for three months and I will be reapplying for Disability so that I can hopefully have a little bit of financial independence while I am unable to work.

This past year a new legislation was passed that changed the rules (in a good way) for folks with respiratory illnesses to qualify for disability. Post-Transplant it is even more difficult to qualify because the laws are archaic and they view you as being “cured” since you got a new organ; but organ transplant is not that cut and dry and life as a Tx patient is very expensive. I would like to be able to work, but I just don’t know right now if that will possible. Even if I recover well from this set back working full time with all of my health issues has never been a realistic thing; I am just too damn tired all of the time even when I am “healthy” and stable.

Oct 19 2016 : Two weeks post Surgery and back home for a week!

Sorry not have posted sooner but it has just gotten away in the blur of the last few weeks. We have been back and forth to Seattle many times beginning with the first week in August. This was all started by the serious decline in Emily's lung function. The basic goal has been to stop any more decline, stabilize and then hope for improvement. No guarantees that any of those things were possible. There have been many procedures for diagnostic reasons. results from the testing indicated that two surgeries would hopefully be helpful. On August 30th was the first a sinus surgery. This had an unexpected long and painful recovery but seems to have helped with the post nasal drip and Emily can breathe through her nose for the first time in years. Tougher than expected but good result.
We were back in Eugene for a week or so then back to Seattle for visits at the Post Transplant Clinic and a post surgery visit. These trips have become epic . There is in the background the profound fatigue and nausea/pain combined with totally unpredictable traffic. We have become adept at keeping the O2 going  as Peg switches the valve  in the back seat where she has a tiny space among O2 tanks and other medical supplies. Our regular stops are a couple of Burgervilles where they have clean bathrooms that are wheelchair accessible. There are also really excellent fresh berry milkshakes but that is not why we stop there.

After a week back in Eugene from the post sinus surgery check up we planned to head back to Seattle for a quick three day trip to meet the surgeon for the next surgery, the Nissen Fundoplication. This is the stomach surgery to stop or limit acid reflux. The reflux can cause major lung problems. Well  best made plans. The three day trip turned into three weeks with fifteen days of that in the hospital at UWMC. (We have looked at the calendar and realized that we have not spent more than ten days in a row in Eugene since early August) This time in the hospital involved more testing to evaluate for the stomach surgery and an attempt to stabilize and gain some strength in anticipation of the surgery. It was notable the number of medical folks of the highest level that were watching over Emily as this surgery approached. Not until the day before was final go ahead made. Her surgeon is head of of general surgery at UWMC and was very attentive before and after. His team was constantly present in the hours and days post surgery. The post surgery stay was three full days rather than the normal one. We remained in Seattle an additional three days to be close to UWMC and rest before driving back home a week ago this past Monday.


We can not over state how good to is to be back home under our own roof and in our own bed with dear old Gus, our 12 year old golden staying as close to Emily as he can get. Medically, Emily still is on O2 all the time. She has been able to walk on her own to the living room. Small but big steps. Because of the surgery diet is limited to really soft foods for a month. That southern favorite Grits and Eggs all smashed together, and know as Goop, is most popular. Pain is much better but nausea still rears up pretty often. The recovery from this surgery is pretty long and the true evaluation of just how well it works is probably six months out. There has been a pretty serious rearranging of the anatomy. At this point though it seems to have helped a lot with the acid reflux. Lung health : it will also be a long time in  evaluating just what the new normal is. But a very good first step is the in house walks and being able to converse without going into distress.

We all want to make a few special thanks. As always our dear friend Nicky has been there for us. Taking care of Gus for a few days,  picking up Rx,  helping get Emily into the house and just being part of the foundation of our lives. Our good neighbor Joanie has watched over the house and is a good friend to Gus. When three days turned into to three weeks she not only watched over things but had the backyard looking perfect which was a sweet greeting home. Bobby picked up very important O2 supplies and mowed the grass at a rental. Our friend Bruce in Seattle appears magically to help out as needed. As does Mike to raise spirits and carry Emily down the stairs, princess style, so we could head home. I know I missed folks but thanks to all. This recovery is going to be a long journey. Please keep in touch via comments here and on FB with Emily.

Emily has been receiving a lot of cards, letters and packages via mail. UPS, etc. They have come to our house in Eugene, The Collegiana in Seattle (this is the excellent place we stay that belongs to UWMC and is for folks with family being treated) and a few things arrived at the hospital. These are great. I can not over state how much they mean. They often bring a bit of light and laughter to some long days. We are back home but the day to day health issues remain at a most serious level. These personal contacts mean so very much. Thanks and keep em coming. Take care. KM

Wednesday: One day post surgery .

     Here is a bit of an update of the last day or so. Emily's stomach surgery was yesterday  morning. She was the first of the day. Peg spent the night with her and I went over at 5:30 am. Emily was moved by gurney to the pre surgery area about an hour later. She left for the surgery area about 8:00 and was finished by 10:00, when we saw the surgeon. He told let us know surgery had gone well.
   
She then went to the recovery area which is a pretty amazing and kind of unnerving place when you first see it. Unfortuantely it is all too familiar after all the procedures of the past years. It's all business back there. We finally got to go back at 1:00. Those three hours had been tough for Emily with the dreaded nausea and some pain. The entire team had  been ready for this as it has been such a problem in the  past. One of the docs said they basically used everything available before getting things truly under control. This was extra important as heaving after stomach surgery is pretty high on the list of bad things to have to do. Especially since this surgery makes puking almost impossible.
The pain however was  pretty well controlled early on. She remained in recovery until about 5:00pm. They were being very cautious of her lungs and wanted to monitor things extra long and careful. the recovery area which has about two dozen curtained areas had become very empty and quiet. When busy there is a boggling amount of activity with all of the ace medical folks going about their tasks. By the time we left it was like being at the pub long after last call. Most of the energy has gone out of the room as folks cleaned up and send drifted out the door.
   
    Last night was about as good as a first night after gets. Emily has a magic button that she gets to push for pain meds and this lets her stay ahead of the pain curve. Anti nausea meds are at the ready and the night nurse staff was excellent at staying on top of things. There were a coup;e of adventures with controlling blood sugars (Emily is diabetic). This is tough post surgical. Sleep was in short stretches but everyone worked very well to manage this. It's important because getting too far out of whack can bring on the nasty fiends: Nausea and Heaving. The evil twins.
    So as of mid day Wednesday things are going well. The goal of the next few days is to continue to manage the pain and nausea and evaluate when discharge will be. Not today for sure. As much as she want to get out every one is being very careful. Then we will stay in Seattle for at least a day before taking on the trip back to Eugene.
     Thanks for the good wishes that folks have been posting here and on FB. Emily reads them all and appreciates the contact.

October 3rd 2016 .....UWMC........brief update.....from keith

    Its Monday here is a quick update. We have been scrambling since the last post. The last post had some info about the 48H PH study with the capsule in Emily's esophagus. The study had to be stopped at about 30H because of severe reflux which caused terrible burning pain.  Emily was discharged on Thursday evening and the pain continued throughout the next day. By early evening it was just not ok and with a lot of calls it was arranged for Emily to be readmitted directly to the hospital. Not through ER. Admission was at 10:00 at night on Friday just as the UW game was over. (The UWMC is next to the stadium) We were like a spawning salmon going against the flow. First the traffic cops would flag us down and then clear the way. We got her checked in and by about 3:00  in the morning she had a reasonable level of pain control. There was a drug reaction which caused uncontrolled muscle spasms mixed in just to keep things exciting. Since then the reflux is reasonably controlled and yesterday was able to eat for the first time since Wednesday.

    This is all in preparation for the potential surgery on Tuesday morning. Tomorrow. This is the Nissen Fundoplication  surgery. Rearranging the top of the stomach to prevent reflux. This is a major surgery with a long recovery time. The major concern is that with reduced lung function Emily is considered at high risk for surgery. However it is also the considered opinion that to protect the lungs the reflux must be controlled. Rock and a hard place. A lot of very good and skilled folks have been giving her there attention. As of late Monday afternoon the surgery is a go.

    The plan is for surgery early tomorrow and then one or more days post op at UWMC. Then we will wait a few days to rest and be near the medical team here. Once Emily feels strong enough we will drive back home to Eugene for prolonged recovery.

    Send good thoughts  Emily's way tomorrow we all think that they help.

Today is Emily's Birthday !

    This is the birthday time of year at our house Peg's on Tuesday and Emily's today. Since we had not planned on being in Seattle we are a bit short on birthday cakes and cards but  are still having fun talking about birthdays past and plans for future ones. There is one big present today: Emily is being discharged from UWMC this afternoon. This is a good thing. On Wednesday Emily had a small capsule placed in hers esophagus to measure the acid levels from reflux. The data is sent to a small recording device worn around the neck. This goes on for 48 hours. The data will then help make the decision about a major surgery  possibly next Tuesday. This would basically redo the opening into the stomach to limit reflux. It's a pretty big deal. This is to hopefully reduce damage by reflux to the lungs. A major consideration is that she is considered a high risk candidate for surgery because of decreased lung function.  Each time under is a worry. Yesterday's procedure also required full anesthesia but was for a very short time. It took her most of the day to fully wake as some of the post surgery anti nausea meds really made her sleepy.

    We will remain in Seattle til the test is finished on Friday. We will stay here in anticipation of the surgery on Tuesday.  Hopefully the hospital stay has calmed things down and Emily can rest and gain strength for the next step.

Hello to all from us three.

Today is Emily's Birthday !

   



This is the birthday time of year at our house Peg's on Tuesday and Emily's today. Since we had not planned on being in Seattle we are a bit short on birthday cakes and cards but  are still having fun talking about birthdays past and plans for future ones. There is one big present today: Emily is being discharged from UWMC this afternoon. This is a good thing. On Wednesday Emily had a small capsule placed in hers esophagus to measure the acid levels from reflux. The data is sent to a small recording device worn around the neck. This goes on for 48 hours. The data will then help make the decision about a major surgery  possibly next Tuesday. This would basically redo the opening into the stomach to limit reflux. It's a pretty big deal. This is to hopefully reduce damage by reflux to the lungs. A major consideration is that she is considered a high risk candidate for surgery because of decreased lung function.  Each time under is a worry. Yesterday's procedure also required full anesthesia but was for a very short time. It took her most of the day to fully wake as some of the post surgery anti nausea meds really made her sleepy.

    We will remain in Seattle until the test is finished on Friday. We will stay here in anticipation of the surgery on Tuesday.  Hopefully the hospital stay has calmed things down and Emily can rest and gain strength for the next step.
Hello to all from us three.