Mid summer update 2014

Happy last week of July – one that's made especially happy by the fact that the skies are blue, the temps are in the 80's and my AC is turned off! Since my last blog entry was in May, I guess I'm once again past due for a little update. Things have gone well since April – it took about 4-6 weeks to recover from being in the hospital but that was just about perfect timing since I had a date with Mickey Mouse the beginning of June. Lisa, Connor, and Katie invited me along on their Disney cruise which I gladly accepted and am glad I did. An enclosed area with thousands of kids was definitely a test of my germaphobic inclinations. Between bottles of Purell, selective eating from the buffet and God's watchful eye I survived without picking up another cold! And with the exception of a tooth knocked loose, I think the kids also survived unscathed. Since then, summer has flown by – sand volleyball, Catholic Challenge Sports events, weddings, a few trips to cheer on the Royals and a couple fishing outings with Mom and Dad. I haven't made it water skiing yet, but hope to remedy that in August. My health has been about the same – caught my quarterly cold a few weeks ago which of course ended up as pneumonia. It was treated a little more aggressively than last spring which will hopefully keep me out of the hospital this time- I'm not quite off the medications yet but am feeling pretty much back to normal. Today I had my annual visit with Dr Vose in Omaha which went well – after 4.5 years of trips up I-29, she said that I didn't need to come back until next June! (I'm sure Dad will miss those drives). I have no doubt that the bumps of life will continue to come but at this point I just have to roll my eyes, shake my head and laugh with each new bump – I'm pretty sure that I'm getting close to a Guinness record of having the most body systems affected by chronic diseases. (I forgot to tell you that last week I was diagnosed with avascular necrosis of the femoral head – fancy way to say that I've lost blood supply to the part of the leg bone that hooks into the hip socket – that will earn me a hip replacement at some point) The way I see it, when I finally make it to Lourdes France or when God whips out the big miracle, it will be all that much more amazing and glorifying! All this is just setting the stage.

update

Quick update – everything is going well. I am feeling better and stronger every day. I haven't had a fever since leaving the hospital, and my breathing continues in the direction of “normal”. I lost a lot of muscle and weight while in the hospital and unfortunately, regaining that has not been as quick or easy. But, nothing I haven't faced before. I had my first follow-up with the pulmonologist on Friday. The repeat xray showed signs of improvement, my oxygen saturation was back to normal and she felt like my lungs sounded better. Presuming that COP is what I had/have, I am recovering faster than some which means I'm able to start tapering off the steroids. Unfortunately that taper will take at least 2 months. So, as I work to climb back up the hill I am grateful for the sunny days and nice weather. Taking walks outside is definitely preferable to walking on a treadmill in the gym.

“the Lord is with me; I will not be afraid...The Lord is with me; he is my helper...It is better to take refuge in the Lord than to trust in man.” ~ Psalm 118: 6-8

Happy Easter!

After 261 hours in the hospital, I feel so blessed to have been discharged in time for the holiday weekend. Though a long way from back to normal, I'm feeling better and stronger each day. No fevers for 4 days which is in and of itself a great accomplishment! Keith, Lisa and the kids came in for the weekend which was an effective motivation to get moving and I'm hoping to get back to work on Monday even though it probably will be a little reduced workload as I attempt to get caught up after missing 2 ½ weeks. Thank you to everyone who has followed along with my most recent journey and for all the prayers. I will try to give periodic updates on my recovery. For now, I'll spend the next 2 weeks regaining strength and will follow-up with the pulmonologist in 2 weeks.
During Lent, we try to pursue a deeper relationship with Christ and I can definitely say that the past 3 weeks forced me to do that. They have also been a good reminder of how as we draw closer to God, he draws closer to us. At the resurrection the angel tells us, “Do not be afraid.” - I'm not sure I can say I've achieved that state. As God continues to challenge me and pull me out of my comfort zone, I still find myself hesitating at the unknown of where the Spirit is leading. I pray that God will give me the grace to step into the new day, ready to face the next challenge.

Day 11 – light at the end of the tunnel

So I can finally say that it looks like I'm going home! I am so past ready, you can't even imagine. If I was going to blow through 12 days of vacation, I can think of about a million places that I would have rather been! But the good news is, I'm going home! I definitely feel a little better today – not sure if that's because of the steroids they started me on yesterday or just the knowledge of discharge. Either way, it's a good thing. I talked to the pulmonologist and the current plan is to follow up with them in 2-3 weeks to make sure things are getting better. At that time they'll have a better idea about how long I need to be on the steroids. He said that we'll never probably know if this is truly BOOP/COP or some other form of pneumonitis since they can't do the biopsy which would be confirmatory. I'm hopeful for the pneumonitis since BOOP/COP has a high risk of recurrence and my bones don't need any more steroids. What a blessing to be home for Holy Week and Easter. During Holy Week I think we're all called to think about suffering and what it means. I'm not sure that I have a great grasp, at times I feel like I can put it into words and on other days, not so much. I know that suffering can be personally refining and strengthening if we allow it to. But, in order to move forward each day, I have to believe that our suffering serves a greater purpose. Maybe it's one of those “unknown” things, where we just have to believe that God can use it in His plan- not that he causes it but that he can take it and turn it into something beautiful. Faith can allow us to have peace in knowing that through our suffering we are connected with Christ's ultimate suffering. And in God's perfect plan, somehow our suffering can help others. Not sure how it all works, but for me, I have to believe that it does.

“In this you greatly rejoice, though now for little while you may have had to suffer grief in all kinds of trials. These have come so that your faith – of greater worth than gold – may be proved genuine and may result in praise, glory, and honor when Christ is revealed.” ~ I Peter 1:6-7

Day 10

Last night was once again a test of my faith as my fever returned. What a frustrating struggle this has been. Some of the doctors think the fever was just a result of the bronchoscopy earlier in the day, others refuse to say. I think everyone is doubtful that the cultures yesterday are going to show anything so am not sure why they repeated the test. Oh well, I guess it's reassurance for them that they didn't miss something the first time. While no one else has been brave enough to name a cause for all the complications, the pulmonologist today said that he is ready to give it a name – BOOP - which can be a complication of lung disease and resembles bacterial pneumonia but is actually an inflammatory problem. (very, VERY simplified description) There are a couple parts of my journey that don't really fit the picture so maybe I had pneumonia at the beginning and it has transitioned? Who knows. The bottom line is that the treatment for BOOP is steroids so they're going to start those today, stop the antibiotics and see what happens. If I don't respike a high fever, I should be going home tomorrow – praise God. A friend once said that we give thanks for the things we know as well as the things we don't know. For, it's the things we don't know that builds our faith, trusting that God's in control and taking care of those aspects of our lives. It's nice to have a plan, I know that there's always “the” plan, but I like it when my life has a plan. So, today I am trying to find peace in the fact that there's a plan and pray that it's the right plan!
“For I know the plans I have for you, declares the Lord, plans to prosper you and not to harm you, plans to give you hope and a future.” ~Jeremiah 29:11

Tuesday, Bronch-day

Today was a bit of a repeat of last Tuesday – got a bronchoscopy to culture my lungs so now I will wait until the cultures come back – probably 48-72 hours. I had hoped to send a blog before I went down for the procedure, but they surprised me with a 9:00 timeslot instead of the 2:30ish slot that I had last time. That is a very good thing since spending all day not being able to eat or drink is not fun. They really should have let the resident know that I was going early because when she came in at 7 this morning she told me it would probably be after lunch- needless to say, I wasn't super pleased by that news and probably let her know. Anyway, procedure went smoothly, they must have given me extra anesthesia because I slept until after lunch. Other than that, nothing new. Temperatures have fluctuated in the 98-99 range today so I pray that they don't go any higher. I seem to have a little more of an appetite (which makes mom happy). Labs are all normalizing. Mentally a better day as well. Wish I had more news, maybe tomorrow.
“When you pass through the waters, I will be with you; and when you pass through the rivers, they will not sweep over you.” ~Isaiah 43:2

Day 8

I feel like I'm on a roller coaster. One day I feel like I'm hanging in pretty well and dealing with all this, and the next day I can't hardly stand it with everything bringing me to tears. Today is an emotionally tough day. I've been here for 8 days and don't feel like they're any closer to figuring this out or having a plan than they were a week ago. In fact, it feels like the same thing over and over and over again. Tomorrow they are going to repeat the bronchoscopy (culture by “washing” my lungs, not taking a tissue sample) because nothing grew out last time so let's do it again and see if anything will grow this time. Seriously? I've been on IV antibiotics for 8 days, do you really think anything is going to show up on a culture? It would be nice if it did, because then we would know what to treat, but I really think they're just grasping at straws. I guess the plan is that if nothing grows on this 2nd go-around, they'll presume that the pneumonia is treated, stop the antibiotics, put me on steroids and hope for the best. Their confidence isn't giving me a lot of faith. I think the reason that this hospitalization has been so much tougher than the others is that I don't know where I'm going or what I'm fighting. I'm floating in the middle of the ocean in a boat without a rudder. In all the past battles, even if the diagnosis was grim, at least it had a name and the doctors had a plan and a direction. This feels so different, so helpless. Well, as you can tell, I have a poor attitude today so to try and improve it, I'll list some “silver linings”: I haven't run a fever since yesterday AM, I didn't have to get outside in the snow this morning, I have a private room at the hospital, Mom has generously been bringing food from home since only a couple of comfort foods even sound remotely appetizing, and even when I can't feel God's presence, I know that He's still by my side. So here's to tomorrow being a new day.

Day 7 in the hospital

When this all started, I would never have guessed that I would still be in the hospital after 7 days, and I really wouldn't have guessed that after 7 days, we'd be no closer to a resolution. I'm being followed by the hospitalist, pulmonology and infectious disease and no one seems to know what's causing the fevers to continue. All the cultures remain negative. My chest Xray had shown improvement last week but they're going to repeat it today to see if things have changed. They have a test to check for fungal infections pending, results from that should be back Tuesday. If they still can't figure out what's going on, I'll probably have to repeat the CT scan of my chest and maybe go back for another bronchoscopy. I'm hoping to avoid the bronch because this time they would take a biopsy of the tissue and to be honest, I don't have any extra lung tissue to spare. Honestly, I don't care if they figure out the cause, I don't need a specific answer, I just want to be better. I'll take a miracle any time. As you all know, I am not a fan of hospitals and I've had enough of this one. I'm really ready to go home. Please pray for my mental strength while I wait, for wisdom for the physicians and for resolution of whatever is going on. I really appreciate everyone's support!

"The Lord s my light and my salvation; whom should I fear? The Lord is my life's refuge; of whom should I be afraid?...Though war be waged upon me, even then will I trust. I believe that I shall see the bounty of the Lord in the land of the living. Wait for the Lord with courage; be stouthearted, and wait for the Lord." ~Psalm 27

Fell short of the finish

It's a lot different here today than it was on Wednesday. Everything was looking up on Wednesday and then Thursday I just didn't feel right. I couldn't verbalize what was wrong and I wasn't running a fever but I just felt anxious, like something was going to happen. Friday I felt worse – super tired, no appetite and chilled all day. By Friday evening my fever came back, topping out over 103. So, needless to say, it's a good thing they didn't let me go home Friday morning or I would have been back in the ER last night and we all know how great that would have been. Last night they sent out some cultures but I don't think we have any results back. In fact, it's 9:00 and I haven't seen anyone this morning – not even the nurse aid. I hope this isn't a sign of how the weekend will be but I'm afraid it is.

Thursday update:

Clinically, things all seem to be on the up-and-up. Fevers have stayed away, labs are improving, lungs seem to be opening up. All the cultures remain negative and the biopsies are negative as well. My doctors have stopped 2 of the 3 IV antibiotics and plan to stop the 3rd one tomorrow. At that point they'll switch me to an oral antibiotic and as long as things continue to improve, they'll let me go home! I can't explain it, but it's a very strange feeling. As you can imagine, I'm definitely done with this 9x11 room but I just seem to feel uneasy today. I don't know if it's just exhaustion from being here all week or if it's my stomach saying that it's done with all the meds or if I'm anxious about what will happen when they stop the IV antibiotics. Probably a mix of all 3. I feel apprehensive and a little nervous about the thought of the pneumonia re-surging AGAIN. I don't think I can do another 6 days in the hospital if this doesn't work. In my head I know that I shouldn't worry and in my heart I know that I need to give this over to the one that always walks through the valleys with me, but I just can't seem to get over the hump today. I guess we all have days and this one seems to be mine. Please pray for my peace to return, the pneumonia to stay away, and for me to regain the strength necessary to return to work on Monday!
“So do not fear, for I am with you; do not be dismayed, for I am your God. I will strengthen you and help you; I will uphold you with my righteous right hand.” ~Isaiah 41:10

Entry 3 – read below to start at beginning!

Wednesday – another day in the hospital but today I really feel like I've turned the corner. My fever did not come back last night so I am past 48 hours of no fever! I talked with the pulmonologist this morning and she was optimistic. Still feels like everything I've experienced is bacterial in nature rather than GVHD or cancer... So now we are just waiting on the culture results to start coming back so that they can start weaning the IV antibiotics and start putting me back on oral antibiotics and then discuss sending me home! Waiting is so hard and I know that we all do it every day but despite all the practice, I never seem to get any better at it. I do, however, feel like I am able to wait in peace and not in a state of anxiety or worry so that is a true blessing. I heard someone ask one time whether we wait for God or with God and I think the answer is both. I definitely feel his presence with me as I wait for his perfect timing.
Post note – as you figured out, what I thought was a “God thing” yesterday turned out to be too good to be true. The transport guy thought he had me connected to the internet yesterday but I let him out of the room before I tried navigating to any other sites. It was only then that I realized I still wasn't connected. This is the first time I've had an extended stay in the hospital without access to the internet or way to update my blog and I'm finding it very difficult!
2 hours later: I just figured out that my computer will stay connected for about 20 seconds before it loses connection so if I work really fast I can get a blog posted. So I don't really have access, but I kind of do. If anyone out there is a computer guru and has any idea why my computer can't authenticate, let me know. The nurse assistant looked at it this morning and thought it looked my firewall was blocking the connection so she tried turning it off, but that obviously didn't work. Wonder if a virus could be causing this grief??

Tuesday update

So you don't have to look hard in your life to find a “God thing” and I'm going to share just a couple before I continue with today's entry. Yesterday, my parents were in route from Cinci so weren't at the hospital until the evening but a good friend that works part time at this hospital got called in to work so she was able to pop in a couple times -bringing a smile and friendly face.
I had planned to post a blog yesterday but couldn't get my computer to log on to the wifi, well I don't know anything about technology and my nurses didn't know and you all know what the help desk folks at a hospital have to offer (and it's not computer assistance). So, I had resigned to the fact that I wouldn't have email or internet access during this hospital stay. This morning, the transport guy came to my room to take me for my CT and my mom asked if he knew of anyone in the hospital that might be able to help us. Turns out that what he's in school for so he had me connected in about 2 minutes.
OK, so now to the update. (what I would have posted Monday if I had had internet access is below so you might wish to read that first) Yesterday went ok. Spiked a fever of 103+ around lunch but haven't had one since. Slept pretty well all things considered. This morning my labs are improving (WBC dropping for those who care/know). Talked to pulmonology who recommended a CT of my lungs along with a bronchoscopy (tube into my lungs to look around and then culture the pneumonia to look for scary things) so I'll get both those things today. That's good because more info will hopefully speed my release but bad because I can't eat or drink until I have the bronch and that's not scheduled until 2. Ughh. I should have eaten more dinner or woken up early for breakfast! So that's what I know today. Will update again tomorrow!

He sent forth his word and healed them; he rescued them from the grave. ~Psalm 107:20

Monday update

Well, things aren't going the best so looks like I'm going to be back to fairly regular blogs (but hopefully not too long!). So I was feeling so much better and then last week things started going south again. Went to the doctor on Wednesday, diagnosed with pneumonia, started back on antibiotics. Followed up on Friday – I was still running fevers, but my doctor thought everything was trending in the right direction so I just stayed the course. I had a pretty crappy weekend, things kind of stopped improving and I was still running fevers on Sunday so my doctor said I needed to go to the hospital. She tried to put me at Menorah (where I could just be directly admitted), but they refused to take me due to the complexity of my life, so I had to go to a different hospital and enter through the Emergency Room. Oh my gosh – thank God I don't have to do that too often! ER's are so gross. First impressions were some young guys peeing in the parking lot and when I got in, their friend was puking in the ER. The waiting area was kind of dirty – they don't wipe anything down in the triage area between patients,. So, being the germ-freak that I am, I requested the nurse wipe everything down before I was triaged and then pleaded for anyplace to wait besides the waiting room! It took about 2-3 hours to get out of the waiting area and a total of 9 hours before I finally got to my room! Ridiculous. Thank God for a selfless friend who volunteered to sit with me in that suss pool – if she hadn't been there, I think I would have left which would not have been a good idea. I just know I'm going to pick up something worse than I already have from the ER. Anyway, that is over but, I'm a little tired today after only 4hours of sleep last night. Now that I'm in the hospital, it's very nice. Everyone is friendly and they seem to be creating a plan but doesn't look like it's going to be a fast process. I'll try to give at least a short update each day until I get discharged. As always, big thanks for everyone's prayers – that is truly the best gift you can give. As I've read all the uplifting notes and verses it brings such a peace and the tears that come with that sort of peace. I'll share just a few.
Now to Him who is able to do immeasurably more than all we ask or imagine, according to his power that is at work within us. ~Ephesians 3:20
For the eyes of the Lord are over the righteous and his ears open to their prayers. ~1 Peter 3:12

continued...

I've attached the "to be continued" to the bottom of the previous blog so see below...

March Madness

I hate that lately I only actually get around to blogging when things aren't going the best, I've procrastinated posting about how great the first 2 months of the year have been or how blessed I was to be able to take my first “warm vacation” since 2009. Key West with great friends was a perfect way to end February (especially since it allowed me to miss some nasty KC weather). But, as I said, I didn't manage to get a happy blog posted so now it will have to wait. A week or so ago I started with what seemed like an innocent cold – but in the back of my mind, I knew better - none are innocent for me. Last week was a bit of a roller coaster with a bad day followed by a good day. Just enough good to keep me from getting too worried. By Friday the ball dropped, and my oxygen levels were low enough to get me admitted to the hospital, but I didn't want to go to the hospital. I know what the hospital offers and I was already doing all those things: fluids – check, breathing treatments – check, steroids – check, antibiotics – check. In my pessimistic view of the world, the only thing the hospital was going to offer me was lack of good rest and exposure to a bunch of additional germs. Probably not the wisest, but decided I was sticking to my plan until Monday – if not better, I'd go to the hospital. I'm not going to lie, the past 3 days have been rough, especially the mornings. I've spent a lot of time on my knees and have shed plenty of tears. Tears of frustration, tears of fear, tears from hearing the voice of your mom, tears from the feeling of going completely broken before our Lord. God always gives us the help we need, but in the middle of the storm it can still feel pretty hopeless. I know that it will get better, or it won't and there's not much I can do to affect that. As a good friend reminded me today, we all know who's managing this ride and it's no one on this earth. To be continued.....

Update: March 25. Sunday evening after writing the above post, my lungs seemed to relax and open up, and I've been slowly feeling better since then - yea, praise God! I'm definitely not 100% but feel like the tide has turned. It's frustrating to think about the future because once I get a cough like this it seems to take 2 months to go away, so I'm going to not think about how long it will take for this to go away and instead try to be content/grateful for today (a day where I'm able to go to work and am not on oxygen!)

Year End Review

Well, it's way past time for an update and to be honest, with the unpredictable time between updates, I'm not sure if anyone checks this blog anymore. I half wondered if it had been shut down by Google but was relieved to find that it was still active, so I guess I'll update. Since we just celebrated the New Year, (and I didn't get a Christmas letter sent) a 2013 summary would probably be a good place to start. Overall, 2013 was full of conquering doubts and getting back to life. It didn't start the best as I caught the flu in February – it was terrible with a capital “T”. Seemed like it took forever to get my energy back and stop coughing, but with warmer weather, my cough finally left. In May I was able to travel to Cincinnati to see Lisa and Keith – it was a fun trip full of games, flowers and unwelcome wildlife. In June I took my first trip to the NW visiting Cindy and TJ in Seattle – nice city but too overcast for me. While there we drove to Lake Coeur d’Alene to watch a friend compete in an Iron Man – what an amazing/crazy demonstration of human endurance! Last summer I also restarted some greatly missed activities – sand volleyball, playing in the CCS softball league (successful with only a couple accommodations), and water skiing. Mom and Dad tried convincing me to start with 2 skis, but I stubbornly insisted on only 1. If I was going to do it, I wanted to do it the way I enjoyed and it was a success – first pull! Hopefully I'll make it to the lake more than once in 2014. At the end of the summer I traveled back to Cincinnati for a little canoe trip and to watch the AVP tournament – yet another great demonstration of the human body. :) The fall was beautiful this year and I was fortunate enough to travel back to Seattle to meet Baby Rothwell. And then before I knew it, we were at the end of the year. Everyone came home for Christmas so that was fun but I could do without this cold weather! I caught a cold the end of November and I still haven't managed to kick the cough – I guess with my lungs, this might become a permanent fixture of the winter for me. Just another reason that I'm anxious for spring to arrive. I just got back from my 6 month check in Omaha – all continues to look good and she said next year I might be able to decrease my visits to yearly!! As the days and months fly by, I try very hard to remain thankful. Thankful for my health, my faith and the people put in my life to be my strength when I need it most. I'm also thankful to the all-knowing God that cares for me in all my failings and has given me another year. Happy 2014! (PS - I tried to include a picture, but this blog isn't cooperating!! Better luck next time)