Day 6 at home

Well, thanks for praying. Not only did Dicegsa have the medication, it was a little cheaper than the hospital pharmacy and they had plenty of it. I think I have enough for 6 weeks! God is so good and faithful – sometimes I worry like the Israelites even though He always  provided manna for them! He has constantly shown Himself as Provider to me. When will I learn?

And what made today even better? I went out in public for the first time since, well, arriving back in Nicaragua on January 4th (besides doctors visits and the hospital stay of course). I woke up at 2:30 am, wide awake, got out of bed around 3:30, and developed this wonderful plan. It took some convincing on Chase’s part, and he made me call the doctor to get permission (I’m supposed to be mostly house bound for recovery for about a month). Dr. Aragón was with a patient, but picked up his phone to make sure I was okay. I assured him that yes, my blood pressure is fine…it’s just that I would like to go to the mall. Just for an hour. I promise I’ll wear a mask? Please??? Yes! He said yes! I put on real clothes. This is a big deal. (Since I’m at home all day, I usually just wear pajama pants.) They even still fit…sort of. And I put on make up. This was a big day.

(Okay, so I actually just asked to go to the store, and we were gone for a little over two hours, but I did wear the mask!)

So I sat in the car while Chase and my mom went and got my medicine, and then they ordered Subway sandwiches, which we all ate in the car (I don’t have to wear a mask in the car and I can avoid the germs by going in less places). And then we went to the mall. Why? I wanted curtain rods. I bought curtains for our new place in the States but hadn’t been able to hang them due to a lack of something to hold them up. So I masked it up, people stared (thankfully, no one pointed or laughed), and we headed to “Mundo Electronico”. Yes, that means electronic world. What do they sell? Well, dishes, toys, purses, basketballs, and curtain rods, among other things. They do have a few electronics there, but we find it funny that the majority of their products have no electronic components to them whatsoever. I digress. So I walked around the store with my hands in my pockets, touching nothing, so as not to attract potential infectious attackers found on products that who knows how many dirty hands have touched. Mom played the role of my hands for me – I would ask her to pull something out so I could see it better, or have her carry around the product once we decided. It was certainly an unusual way to shop, especially with the mask and all, but it was great to be out of the house for a short time. To not feel like a “sick” person for a few hours.

My mom leaves tomorrow, and I am sad to see her go. While she was here, she cooked, she cleaned, she organized, she swept, she mopped, she filled up my water bottles, she washed the dishes, and the laundry, she scrubbed, she gave me shots, brought me medicine, and so much more. But mostly she loved. And she cared for me. And I am thankful for her. I will miss her, but also, I am ready to learn the new normal. The new life the Lord has laid out for me. I’m curious to see what it will look like.

I’m trying to convince Chase to let me go to the One by One staff meeting tomorrow, but he’s not budging…hmmm…I need a very large bag of gardettos to try to bribe him…

Day 5 at home

Each day, I’m feeling a little better. Last night I slept for over 9 hours! And I only woke up twice to go to the bathroom (a nice break from the normal 4 or 5 times). I’m not feeling as nauseous and each day, I have a little more energy. My blood pressure has been normal, so much so that I was able to cut back on one of the medicines from 2 a day to 1 a day. The cankles are even starting to subside a bit. Unfortunately, my cheeks continue to inflate themselves. I keep telling myself “It’s only 6 months”. And then at my last doctor’s appointment, he said “Maybe a year”. Darn it steroids, I want my old cheeks back!

I have a new prayer request today. One of the medicines I am on (the immunosuppressant) is called CellCept and it is next to impossible to find in Nicaragua apparently. I take 8 of these a day, so I need a lot! (That’s 248 pills a month!) Chase has been to pharmacies all over town looking for it, and it is almost nowhere to be found. He went to the hospital pharmacy and they had enough for today, but tomorrow morning, I’m in trouble. We have one hope – a distributor called Dicegsa, but they aren’t open on Sundays. So will you pray that tomorrow Dicegsa will pull through for us? I’m trying not to stress, which is one of the triggers that can activate and cause lupus to flare up, but it’s difficult when I don’t have enough medicine that I need for 7am the next morning!

(Oh, the nachos Friday night? Amazing. It was good to be re-acquainted with cheese.)

Day 4 at home

In the summer of 2003, my friend Sami and I spent a month in Mexico together serving at  a place called the Mexican Indian Training Center. We spent a large portion of our time there scrubbing bricks…using bricks. There were concrete splatters all over the building, and we scrubbed them until they were clean, bright red, and beautiful. At first, it wasn’t so bad, but soon, the task became mundane and we began to hate those bricks. And we complained. And then the Lord convicted us. So we decided to change our attitudes and instead, share things that we were both thankful for. The rest of the day, we spent praising the Lord for all He had done, instead of focusing on our momentary, selfish afflictions.

Lupus is kind of like those bricks to me. I don’t really like it, to be totally honest. But, despite that, when I look beyond all that is happening, I can see God at work, and He is doing great things! So I want to use this blog post to brag on Him for a minute.

- Many people do not get the symptoms of Lupus all at once, which generally can lead to a years long search for a diagnosis. My body went a little crazy all at the same time, which enabled my doctors to figure out within a couple of days what was wrong with me.

- Also, I didn’t have to search out for the right doctors – the Lord just brought them to me. And they turned out to be excellent doctors who would sit and talk with me for hours and answer every question I had.

- My husband has been an invaluable support for me. Before I got stuck in the hospital, he would give me back massages every time I asked, take me to doctors appointments, take care of the house, do not only his job but my job at work, grocery shop – pretty much everything. He would get me Sprite after I threw up, and the poor guy had to watch and hear it happening pretty frequently. I didn’t sleep much, so neither did he.While I was in the hospital, he would drive an hour every day to come see me. He loves and serves me unconditionally. God has blessed me with an incredible husband and I cannot imagine going through this without him.

- In case you don’t know this about me, my main love language is physical touch. God gave me a doctor who was always patting me on the back, rubbing the back of my head, giving me hugs, etc. I didn’t just feel well cared for physically, I felt loved.

- My mom was able to take 2 weeks off work to come down and help take care of me while I was in the hospital, and she has been unbelievably helpful at home as well. My house has seen remarkable improvements since we got home. And I’ve mostly been propping my cankles up on the couch.

- Though this all happened while I am away and in a foreign country – I have family here that has been a great support for me, including Chase’s brother David and his wife Kristina, and Chase’s sister Joanna (who lives with us). And I got my first niece during this whole mess!

- Also, He has shown me that he does answer prayer. Did you pray for my nightmares to go away 3 nights ago? Because they did. Did you pray for the insomnia problem I had 2 nights ago? Because I slept for almost 8 hours (waking up several times, but always able to go back to sleep) last night. Little things, but real things that shout that “God is good and faithful to hear our prayers!” Thank you for standing with me and petitioning the Father on my behalf.

- The Lord has been teaching me many things. That I’m selfish. That I’m not as good at communication as I thought I was. That I believe too easily. But also that He loves me and has not forgotten me. That He refreshes my soul and leads me beside still waters. That He is my peace, my hope in the midst of the storm. My cup overflows.

Well, that is just a few of the ways God has been at work. Praise Him with me? And those bricks? They’re nothing compared to the surpassing worth of knowing Christ Jesus my Lord!

Day 3 at home

I slept last night from 10:30 until about 1:30 – nightmare free! But then the insomnia kicked in and I couldn’t go back to sleep. I laid there for an hour, then decided to get up (I read it can help if you get up, do something until you are sleepy, then try to go back to bed.) Well, I spent some time praying, reading, sending some e-mails. Never got tired – I was wide awake. Around 5:00am, I decided to try to sleep again, but nothing. I laid there for another hour or so until I just couldn’t stand it anymore. I was starving at that point anyway. I haven’t really felt tired all day, but I did take a nap for a couple of hours this afternoon. It’s quite the predicament that lupus can be activated by lack of sleep, but the medicines I’m on to treat the lupus cause insomnia.

And the other predicament that I’m having is that I’m supposed to be walking to regain strength, but anytime I’m on my feet, my legs, knees, ankles and feet swell up like balloons. So I need to spend most of the day with my feet propped up to avoid my skin drying out/cracking from the water buildup. I did start a diuretic today, but I haven’t seen much difference yet. So these two things are a bit frustrating, but again, nothing compared to what I had/was feeling before I went to the hospital. Just challenges to work though, I guess.

Kristina, Linda, Beckett and Hatley came over today and I had a great time holding Hatley and playing with Beckett. Tonight we are going to go to Dave & Kristina’s for Russell Nachos – my one red meat experience for the week – and I’ve been avoiding dairy all day so I could enjoy the delicious cheese. Have you had Russell Nachos? They’re pretty amazing. You should be jealous.

Day 2 at home

Today was testing day. My creatinine level went up a little bit again – from 5.3 to 5.7, but again my doctor was not too discouraged by this. Last night, I had some pretty terrible nightmares, so Dr. Aragón changed around a few of the times for some of the medicines, in hopes of no nightmares/insomnia. My blood pressure is low enough that he lowered one of the medicines for that from 2 a day to 1 a day. And he said I could add a little more sodium back in, but I still need to be very limited. Thank you for praying for my stomach – I kept everything down today! Hoping for the same again tomorrow!

My mom has been extremely helpful – cleaning, getting me food, doing dishes, organizing, doing our laundry, etc. I’m not strong enough to do a lot of those things yet, so I’m really thankful she is here to help me out!

I’ve been feeling very discouraged, and several people have suggested that we might be under a spiritual attack. I’m not really sure what to think, but I would appreciate prayer in this arena, as well.

“My soul finds rest in God alone; my salvation comes from Him. He alone is my rock and my salvation; He is my fortress, I will never be shaken.” –Psalm 62: 1-2

Day 1 at home

Although it is SO great to be home, today was hard. Simple things like walking up the stairs take all of my energy. I couldn’t keep my lunch down, which brought back terrible memories and fears of the 10 or so days in a row I spent not keeping anything down before going to the hospital. Also, I had just taken a bunch of pills, including the steroids, which probably hadn’t gone through my system yet. Not sure what to do about that.

I go in tomorrow morning for another creatinine test, and then tomorrow afternoon for a doctor’s appointment. Pray that my creatinine level drops, instead of staying the same or increasing. Pray also for diligence for me as I am learning a new diet, taking pills all throughout the day, and keeping track of liquid input/output, blood pressure, and pulse regularly. I am also extremely weak, so pray that I can regain strength and muscle in my legs without overdoing it. And pray for my stomach – that it would behave itself and keep food down like any good stomach should. We were blessed this evening with a delicious dinner made by our friends, the Normans, and…so far, so good.

Oh, and it’s so great having my husband back. I missed him like crazy. I’m pretty sure I got the best one out there.

Day 12: The Escape

Well, it’s so close I can taste it…and it almost got taken away! My creatinine levels actually went up a little bit today from 5 to 5.3, and the doctors sort of wanted me to stay another day, but I think they knew I’d be crushed. So I get to go home, but now I will be my own nurse – I have to rest, rest, rest, measure my blood pressure twice a day, keep track of how much I’m drinking vs. peeing, drink at least 4 liters a day, give myself a shot every couple days, and take about 22 pills a day. I also need to walk a lot (I’m not supposed to do aerobics yet though), stay out of the sun, completely change my diet (dairy no more than once a day, red meat no more than once a week, no shrimp, and as little salt as possible). And I’ll be wearing a mask at all times in public. (Promise you won’t laugh when you see me!)

I woke up at 4:30 this morning and after the dreaded needle to the arm, I started thinking about being able to walk over to David and Kristina’s (my brother-in-law and sister-in-law, who live in the same apartment complex as us), and love on my nephew Beckett, and my now 6-day old niece, Hatley. Of course, I started crying as I remembered how I had forced myself, despite incredible arthritic pain in my feet and legs, to walk over there because I was lonely and missed them all so much. It doesn’t seem real that I am going to be walking over there today, relatively pain-free, although a little wobbly to be sure. The tears? I’m not blaming the steroids this time. It. was. pure. joy.

So taking 22 pills a day doesn’t come without a price. The side effects I’ve been having so far are sleeplessness, tingly/numb legs, swollen legs/ankles, pressure/light pain in my head and of course, I’m getting fat. But, on the plus side, the hair on my legs seems to have stopped growing, or at least slowed down exponentially. However, I would take all of these over what I had before. There are 11 main symptoms used to signify lupus, and to be diagnosed, you have to have more than 4 of them at the same time. I had at least 7, including malar rash (butterfly rash over cheeks and nose), discoid rash on my entire body, mouth and nose ulcers, nose bleeds, arthritis, pleuritis (inflammation of the pleural lining around the lungs), renal failure, and anemia. I didn’t, however, have any seizures, which I’m thankful for, but I probably wasn’t too far from it. I should get the results at the end of the week for the Antinuclear antibody (ANA) test that was sent to Costa Rica to test for lupus. I’ve heard that it can be negative, though, even if someone does in fact have lupus. My doctor said that he doesn’t care if it does come back negative; he has no doubt that I have lupus. And honestly, if I don’t, nothing makes sense anymore.

One thing I’ve realized about myself over the years, and more so while I’ve been in the hospital is that I tend to accept things easily. Sometimes too easily. I’m a little like Nathaniel in John 1. He asked Jesus “How do you know me?” and Jesus said “Before Philip called you, when you were under the fig tree, I saw you.” Nathanael, with his child-like faith, confesses “Rabbi, you are the Son of God! You are the ‘King of Israel’!” Jesus responded by saying “Because I said to you ‘I saw you under the fig tree,’ do you believe? You will see greater things than these. Truly, truly, I say to you, you will see heaven opened, and the angels of God ascending and descending on the Son of Man.” Jesus calls me His. I believe Him. I don’t have to ask a lot of questions. This was actually beneficial when it came to the lupus diagnosis – I was never in denial; I just accepted it. I do, however, think that it will be different now. I have a lot of questions and things I need to sort out with the Lord. Truths and promises that I used to believe so easily are going to take a lot more faith. But I trust that I will see greater things. That the Lord will reveal Himself to me in ways He might not have in a lupus-free life. And I will be depending on Him in ways I never needed to before. I know that you all have been praying for me more than I could ever deserve and I have been so humbled by the supportive community that you all have been for me. But I’d like to ask you to pray for one more thing: my heart. As I wrestle with the Lord over the coming weeks, months, and years, I will continue to need your love, support and prayer. Thank you for your faithfulness to me.

Oh, on a lighter note, I finally got to watch Price is Right today. It was just as great as I remember it as a little girl. Although, I did kind of miss Bob Barker. (I’m a nerd, I admit it.) Well, the wheelchair is here to whisk me away to FREEDOM! And… here come the tears… (it’s the joy again, not the steroids!)

Day 11 hospital update

I was a little disappointed today to hear that my creatinine level did not change since Saturday – it is still at a 5, but my doctors had warned me this could happen and they don’t seem too discouraged by it. They are actually encouraged that it is hasn’t gone back up, that it is maintaining, and that I haven’t gotten any infections or had any major setbacks. AND they are still thinking about letting me go home tomorrow anyway. My kidneys are still failing, but they said it could take 3 months to get back to normal and (thankfully), they aren’t going to keep me hospitalized that long. I’ll just have to come back frequently for blood tests, check-ups, sonograms, etc.

In my first blog, I mentioned that the first time I went to the doctor (January 6th), I took a test called the C Reactive Protein test. Normal people have between a 0-5 level, but mine was 246. Scary. Dr. Porras thought I had a serious bacterial infection, but it turns out it was just a sign of major inflammation in my body. Anyway, when I went back to see him on the 13th, after taking an antibiotic, it was down to 100 (still high, but better), but I was in such miserable shape that Dr. Porras admitted me (thinking I had Rocky Mountain Spotted Fever at the time). Anyway, they tested my C Reactive Protein again today and it’s down to a 7 – almost normal!

One of the fun and challenging parts about this whole experience is that it is all taking place in Spanish. My medical Spanish has definitely improved, and I think the Lord has enabled me to understand more than I naturally would be able to – I understand almost everything the doctors say to me! But miscommunication is still inevitable. For example, I knew that I had swelling in my kidneys and lungs, but apparently my liver was swollen as well and I was completely missing that word every time they said it. In case you ever need to know, the Spanish word for liver is “hígado”.

Also, several days ago, a man came in and put a little blue triangle sticker on my hospital bracelet. I was a little confused, but he explained that they were starting a new system with codes and red would mean “this patient could fall easily”, yellow would mean “special diet” and blue would mean “patient has psychotic problems”. I was shocked and asked him why they thought I mental problems! He laughed and explained that it was a new system that they just wanted to try out, and I guess since they knew I would be here forever and a day, they’d test it out on me. They want to make sure the sticker stays on through showers and things. I was relieved that they don’t actually think I’m crazy. And the sticker has stayed on my bracelet nicely.

Pray for freedom tomorrow! Is it weird that I’m excited to do things like wash dishes, go to the store, and use the restroom without having someone measure how much I went? I might kind of miss pancakes in bed every morning though…

Day 10 hospital update

No creatinine updates today – the doctors wanted to rest on the blood tests today, and even though I’m super curious what it is, it was nice to sleep in until the nurse woke me up at 6am to weigh me/do my blood pressure/give me a calcium pill. I certainly didn’t miss the 4 or 5am sleep interrupting bright light, needle prick I’ve become accustomed to every morning.

I did have to throw away my flowers today. Kristina had brought me some pretty yellow daisies a day or  so after my life became about tubes, needles, annoying beeping machines, and pills, and Karl Most, from ICF (our English speaking church here) brought some beautiful gerber daisies on behalf of the church (along with some homemade banana bread that served as my mom’s breakfast all week!). Since it’s day 10, they were dying anyway, but apparently the spores in the flowers can cause infection, so the doctors ordered them to the trash. They told me a story about a patient on an immunosuppressant who was toting a bunch of flowers in his air conditioned car to his brothers funeral. Apparently, the spores got in his lungs and caused a really bad infection that he had for months. My heart rate has been high today, which I learned is the first sign of a possible infection, so they got pretty worried about that. The nurse just took my blood pressure and heartbeat again and both were normal, so pray that it turns out to be nothing after all!

Today was a fun day – mom, Paul and Chase came up and we played Settlers again, and this time I was a little less loopy. We took the shelf out of the bathroom again for our makeshift table. Ghetto? Maybe. I prefer to say creative.

Chase is getting a little tired of the mask (I don’t blame him), so he tried to make some air holes.

I debated showing you this picture, because who wants to put a picture of their stomach on the internet? BUT this color is just too amazing not to show you! This is just below my belly button – I’ve certainly never had a bruise this brilliant and beautiful before! So, I hope I haven’t offended, but I just had to share. I traded this for not having thrombosis! The bruise actually has mickey mouse ears as well, but I tried to show you just enough that you couldn’t see my chubby-steroid tummy.

As far as freedom, I don’t think I’ll taste it until Tuesday. I’ll have another blood test in the morning (pray for close to a 3!) and Dr. Granera said we’ll (hopefully) start making preparations for me to leave Tuesday, the 25th. Oh, I also abandoned the hospital robe today. It feels good to wear a t-shirt. And some of my best friends Sami and Becca sent (through Kristina’s mom, Linda) a sweet card (I cried, of course) and some fun new pajama pants, which I promptly put on. I’ve been super encouraged by the notes, facebook messages, e-mails, blog comments, blog shout outs and phone calls. I would never expect such an outpouring of love from so many of you, and I’m simply amazed by how huge the body of Christ really is. So again, thank you. Thank you for being Jesus to me in the time in my life where I need and want Him the most.

Day 9 hospital update

David, Kristina, Hatley, me and my mom a few days ago in Kristina’s room

The medication and treatment continue to work at bringing down my creatinine levels – today they are down to 5.0 from 5.5 yesterday. The doctors are very encouraged by how I’m responding and with the combination of the 3 different blood pressure medications, that is staying down as well. I’m still praying for patience, as a 3 still seems forever away. I have to accept the things I cannot change though, right? I’m hoping I’ll get to go home Monday, but we’ll see! Some great news is that today was the first day I didn’t have to get the thrombosis prevention shot in the belly, which is currently a shade of red/pink/purple that I didn’t know skin could be.

Chase stayed Thursday night and Friday afternoon, we decided to watch a movie. He picked My Sister’s Keeper, which I’d seen before, but I tend to have a bad memory when it comes to remembering movies, so I had completely forgotten that so much of the movie had to do with kidney failure! I’ve been working on trying not to cry so much, but that was next to impossible watching that movie. It’s funny – I was never much of a crier before. Chase said he has seen me cry maybe 3 or 4 times in our marriage…until the Lupus. I was talking with Paul on the phone the other day about how I hate how much I cry, and then I started crying! Poor Paul! What’s wrong with me? I blame the steroids.

I started researching a little bit last night about what life with Lupus will be like, and it made it sound like I’ll be tired, weak, have headaches, achy joints, etc, and I started to get nervous. I asked my doctors if that was how it was going to be and they said that since I will be on the immunosuppressant for 2-3 years, the lupus will be in an inactive state, so I should be able to live pretty similarly to before. Plus a weird mask much of the time. I’ve been really disappointed all week because at first, they told me I wouldn’t be able to be around kids at all (which is the whole reason I’m in Nicaragua!), but I asked again today, and Dr. Aragón said that I could still go to the services as long as I had a mask on. I was so happy I cried. (big surprise, right?)

One fun thing about my mom being here is that she got to go to the kids and youth services with Chase today. When she came in October, the kids service had been cancelled that week, so she only got to see the youth service. She brought her camera, and Chase warned her that if she took a picture of one kid, she’d be taking pictures of all of them. She took so many her camera battery died.

I’m a little nervous because life with no immune system changes so much. I never used to be an extremely clean person, as far as germs and things go. Now I need to wipe down grocery cart handles and treadmills (confession: I have never wiped off a treadmill, but I just don’t sweat that much!). I’ll need to keep wipes and hand sanitizer in my purse and make sure people aren’t sick if they come in my house or if I am going to go to theirs. My life will be need to be so much more cautious. But I guess it’s better than having my own immune system attacking me all the time! I used to be the girl who never went to the doctor, and now, as my doctors told me today, I’m stuck with them for life (or as long as we’re here anyway). But I told them I’m fine with that, because I happen to like my doctors a lot.

Day 8 hospital update

I have a goal! Yesterday, the doctor hinted that I might be able to go home as early as Saturday, but I knew that was too good to be true, so I didn’t let myself get my hopes up. The final call is the nephrologists and today, he said that he’d be comfortable with me going home when my creatinine level is a 3! Today it is down to 5.5 from 6.2, so it slowed down a little, but I’m just happy to have an end goal!

In other news, they took me off the saline solution yesterday, and today they took out the i.v. entirely! They’ll be continuing the rest of my care and treatment through pills (and a lot of them!) They have me on 3 medications to lower the blood pressure, which seems to finally be working as of this morning, so I no longer have to have the armband or toe-pincher on! Freedom! And it’s nice! I also have the freedom to drink as much as I would like now, instead of the strict 2000 ml restriction I have had.

So here I am in room #313, trying to wait patiently for my kidneys to get with the program so I can walk myself out of here and into whatever this new life will look like. This new definition of abundant life, as a close friend of mine put it. I have no idea what lies ahead, but I’m thankful for a God who does know. And for the community He has given me, the body of Christ, to walk it with me. Thank you for reading, for praying, and for your words of encouragement. I am grateful.

Day 7 hospital update

The good news is that my creatinine levels continue to go down – today they are down to 6.2 from 7.2 yesterday. The bad news is that my doctor came in, pinched my cheeks, called me “gordita”, and then said “don’t worry, you’ll only be fat for 6 months.” (Ah, Nicaraguan culture.)

I did, however, get to go down the hall and meet my new niece, Hatley Michelle Russell, who was born last night! I even got to hold her, though the doctor said I had to wear a mask (which wasn’t comfortable at all – I apologize to everyone who has had to wear one to visit me!). Hatley is absolutely beautiful and I love her so much already! I didn’t want to leave, so my nurses had to come and get me to bring me back for blood pressure testing, more pills, etc.

Chase is coming to stay with me tonight and it makes me want to cry just thinking about it! I haven’t seen him much the last few days and I really miss him! Tonight will be the closest thing to date night we’ve had in…I can’t remember how long.

As far as how I’m feeling physically, I’m actually doing well. I asked my doctor some questions about my body today and he said “You don’t worry about your body, that’s my job right now, I’ve got it all under control, you just need to be calm.” I’m not really in any pain, I just shake all the time from all the meds. It’s weird how I can feel so normal, and yet so many terrible things are going on inside my body. Mainly, I just miss normal life. I miss the kids at Niños de Vida. I miss my house. I miss my bed. My friends. My life. Can’t wait to get home. Hopefully only 5 more days here? Seems like forever away…

Part 2: What’s in a hospital day?

Continuing from 8:00am…

-Usually, my doctors come in at some point in the morning to update me/pep talk me/warn me about side effects of things I’m on, etc. Today, more good news! My creatinine levels went from 8.1 to 7.2. I had sort of been hoping to skip the 7’s and go straight to 6’s, but I got a patience peptalk today. I am improving they assure me – my levels are 40% better than when I was admitted, but I guess kidneys can’t just shrink overnight. So here I am on day 6, trying to be patient, knowing that this is only half over. And that is just the hospital stay.

I also received a bit of a reprimand from the doctors. Apparently, I have too many visitors and they aren’t happy about that. SO even though I LOVE it when people come, I think it’d be best if you call before you come so I can make sure no one else is going to be here and that it’s a good time. My cell is 8322-4400 and I have it with me at all times. So don’t necessarily not come, just call first por favor!

- After my doctors left this morning, I finally got to eat breakfast. Then I use the restroom. They measure exactly how much I pee every single time, and compare it to my strict 2000 ml drink rule for the day. They are measuring input vs. output to see how my kidneys are doing I guess. I miss the days of just going to the bathroom (alone) like a normal person!

- The nurse then gave me some pills, did my blood pressure, added some things to the i.v., etc, and then I felt tired again and fell back to sleep! When I woke up, lunch was here. It’s nice to feel a little more rested. I didn’t even feel hungry yet, so I waited an hour to eat. My mom and I tried to find something on tv, but all we can find is the welcoming ceremony of the Chinese president to the White House. I guess he will be in the States for the next 4 days. Once we get tired of that, we move on to the fish channel. Eventually, we just turn it off. Everyday I hope to watch Price is Right, but I always miss it. Maybe tomorrow, right?

- Kristina, my sister-in-law, is having her baby today! In the same hospital! The original plan was for Chase & I to watch Beckett (my nephew) for them while they were at the hospital, but I got selfish and decided I would just have my hospital stay at the same time. I do feel terrible about this, but my mom is going to to be able to help some, so I feel better about that! They don’t know if they’re having a boy or girl – I’m kind of thinking another boy, but we’ll see!

- I have 2 new prayer requests: The first is for patience, which keeps being a theme of advice from doctors, friends, etc. I think I’ll be learning about patience in all new ways and I can’t say that I’m too excited about that yet. The second is for my legs. I pretty much have “hospital bed legs”. I am super shaky (even in bed) due to all the meds, and this doesn’t aid in the balance/walking area. Dr. Aragón says the bed is “bad, bad, bad” and I need to get up and stretch my legs 4 or 5 times a day, but that can be challenging when I have to be plugged into the wall for the i.v. machines. So pray that I can get up on my feet more, the swelling in my legs will go down, and that I can get to the point where I am comfortable walking and standing again!

Thanks for keeping up with the blog, and for praying for me! Continue to pray for the kidneys that couldn’t, but hopefully can again soon!

Part 1: What’s in a hospital day?

Have I mentioned that I’ve never stayed overnight in a hospital before? This is all new for me. Today I think I’ll share some observations, maybe a little about what my days look like.

- Every morning, they come in at some too early hour, turn on a super bright light, poke me with a needle and take a few vials of blood. I always check what time the guy leaves. Today it was 4:44AM. I try to go back to sleep but they have me on a ridiculous amount of steroids to get the swelling in my kidneys and lungs to go down, and one of the (many) side effects is sleeplessness. So I lay there and think, pray, sometimes cry, until I eventually commit to being awake.

- Around 6ish, the nurse comes to start giving me Nexium through the i.v., which they learned after the first day needs to come before breakfast, or the breakfast will be in my lap shortly after I eat it. (Nexium helps with the nausea.)

- The steroids and things are still making my blood pressure really high so I sleep with the i.v. in my left hand, the blood pressure arm band around my arm (which blows up every hour) and a little sensor thing on my finger that tells my heart beat and oxygenation levels. These machines get mad at me sometimes and start beeping loudly. At first it wasn’t so bad, but after 6 days, it gets a little irritating. If I bend my wrist, the i.v doesn’t flow as well and the machine starts beeping. If my oxygen level gets to 90 or below, the machine gets mad at me. The sensor seems to be happier on my toe, so I move it there during the day. Gotta please the machines, somehow. (I was a people pleaser before, I guess it carries over with machines?)

- Breakfast usually comes around 7, and I am always starving at that point. Shortly after comes the needle to the stomach to prevent thrombosis. I have a very nice collection of purple polka dotted bruises around my belly button, and this is certainly the worst part of the day.

- Blood pressure machine just blew up, and it’s 151/95. This will probably mean that they will make me stick this terrible pill under my tongue and let it dissolve to try to lower it quickly. It tastes, well, not good at all.

This post is already long and I’m only up to about 8:00am and I’m hungrily awaiting my breakfast! I think I will turn it into a few posts, so check back later if you care to learn what happens after that!

Day 5 Hospital Update

“Good news!” Dr. Aragón proclaimed when he came in my room this morning! My creatinine is down from 9.3 to 8.1 today, which is a major improvement from the original 11.6. I didn’t even get any dialysis pep talks! The Nephrologist said hopefully I won’t need it at this point! Huge answer to prayer – pray that he doesn’t change his mind and that my kidneys continue to go down at such a rapid rate! The doctors did, however, give me a new estimated time of being in the hospital. It will be at least another week, so my goal leave date is now 1/25. I do have cable tv (mostly Spanish, but some English channels) and air conditioning here, neither of which we have at our house so I guess there is something “luxurious” about this hospital stay, but the idea of being in this bed and eating hospital food for another week is a little depressing. All visitors are welcome (even if you just want to sit in a/c and watch tv with me!) [Correction: I wrote that this morning and have since had several visitors and learned that I can only have 1 (though I got them to budge to 2) visitors at a time, and you can’t be sick when you come! Oops!] I do have my mom here now, which has been so great! It has freed Chase up to go home and take care of our apartment a little bit, and focus more on ministry.

Me with my husband and mom in all my hospital gown glory!

More good news is that we were finally able to reach Medishare today, which is not insurance but a missionary sharing program that we use in place of insurance. We have an annual household portion that we pay and at this point, it looks like they will be paying 100% of the costs after that amount, so this is another HUGE answer to prayer! We have never had to actually use the program before and were a little unsure how it worked. We do, however, have a lot of work ahead of us. We have to translate every receipt, get it as itemized, detailed, and coded as possible and then mail it all in. Not looking forward to that mess of paperwork. Good thing mom is here to help! 

Every morning around 7 is the nurse change. The night nurses say goodbye and fill in the new nurses on my i.v. status, pill status (I take anywhere from 12-20 pills a day!), blood pressure, etc. They’re all such sweet ladies! I was actually able to have an encourging conversation with one lady who wants to get involved with serving at The Refuge Project. She was super excited about it and only works 2 shifts a week (the lady in blue) so that she can use the rest of her time to serve God! Can’t wait to get to know her better!
Prayer Updates:

• My blood pressure is still high. I had to sleep with the arm band on, and it would go off every hour in the night. Currently it’s 146/90, and they started me on medicine today to help lower it. Pray that the Lord would lower it so my doctors won’t worry so much! 
• The swelling in my lungs has gone down a little, I think – I can breathe a little deeper than the day before. 
• I would love to ask you all to pray for the next steps. Life will look much different when I leave the hospital and though I won’t go into detail yet, mostly because I don’t know, I am starting to think about that. My emotions and thoughts are running wild, and as the doctor said, I need to reign them in and think about today and my kidneys, and not think about what is to come yet. But, of course, that is difficult when the endless questions are looming in front of me. 

I don’t know how many people are praying, but I know it is into the 100s and I am just so thankful. All day long I have had visitors who have been lifting me before the Father. Life isn’t worth living without friends like that, ya know? SO grateful for you all. Thanks for being beside me.

Day 4 Hospital Update

So what if I’m a tourist in the hospital?! I wanted to show you a picture of my 3 doctors who are taking such great care of me! From the left is Dr. Aragón, the second doctor to come on board; middle is Dr. Granera, the kidney specialist new on the team; on the right is Dr. Porras, the original doctor I started seeing. It was fun for them to all come at the same time this morning. Normally, they come in one at a time to visit, check me out, etc. Yesterday when they came in, even bearing good news, they weren’t happy, but today, they were much more pleased. My creatinine levels went down from 10.4 to 9.3, so prayer and the steroids are a great team together! Putting off dialysis for another day (praise the Lord!)

If you’re wondering about the masks, those are new Dr.’s orders as of yesterday. Apparently, since my immune system has been so rebellious these days, they are giving me an immunosuppressant to give it a rest, while medicine, vitamins, etc. can help get me healthy again. SO all my visitors have to wear them so I don’t get their germs! Don’t let this keep you from visiting if you are considering coming by! I love having visitors! Yesterday, Lori and Carey, 2 dear friends from my Bible Study snuck me in some Quizno’s, which was a welcome break from hospital food! It came at the perfect time – just before the diet crackdown. I’m now on a no-sodium-no-potassium-no-red-meat diet. Some of the things I’ve been eating the past few days that I can’t now? Cantaloupe, watermelon, bananas, maduros, cheese, beans, and my favorite, french fries. Thanks ladies for giving me a quick last fix before the whip came down.

Paul, our friend from Dallas who lives in Nicaragua and works with One by One now, has come to visit a few times as well. He came Friday night along with David (brother-in-law), Joanna (sister-in-law), and Chase, and we acted a bit like fools. We took the shelf out of the bathroom, made a make-shift board game table out of that and my nightstand and played Settlers of Catan with the Cities & Knights expansion. That was the day after I got here, and I was still a little loopy, so I kept forgetting in the middle of my turn that it was my turn. Oops! I asked my nurses later if anyone ever plays board games in their room and they said it’s rare, but sometimes. I ask if it was all white people who play, and of course, yes it is. We’re nerds. It’s okay. We’ll own it. It was the first time I’ve gotten to just have fun and forget about being sick since coming back to Nicaragua, and that was just a welcome feeling. Thanks David for bringing the fun and games!

Lastly, our friends Jessie & Timothy Crabtree came to visit last night. We had a great time catching up with them since they’ve been in the States the last 3 months! We’ve missed them a lot and are glad they’re back! Other visitors that made it in before the mask rule were Kristina (Sister-in-law), Ann Sharp (friend from our English church here, ICF), then Kristina with Beckett (my 20 month old nephew), who did quite well and liked to come point at my IV and say ow-oh, which is his word for a boo-boo or owie, as other kids may say. He sat up in bed with me for awhile, probably because I let him play with my cell phone and ipod. AND he’s learning my name, which sounds kind of like Ju-dah. Works for me, though – better than being called Chase, which is what I’ve been up until this point! So, there’s a little more social update for you. Sorry there’s no pics of me yet. I looked terrible until last night, so I plan to take a picture of my mom and I today (she arrived last night!) and maybe I’ll even post it on here later today. Thanks for reading the blog! And thanks for praying! Continue to ask the Lord to heal my kidneys completely, and pray that my blood pressure would go back down and my lungs would continue to go back to normal as well. I cannot thank you enough for your prayers, your notes, your e-mails, your comments. They mean the world to me! Love you all!

Quick Hospital Update

Today brought with it both good and hard news. My creatinine levels went down from 11.2 to 10.4 due to steroids and God answering all of our prayers. That’s great news, but the doctor still wasn’t happy and wants it to be improving faster, SO they brought in a 3rd doctor, a nephrologist, or kidney specialist. He talked a lot about dialysis, so they are trying to prepare me for that for sure (but still just in case). If you don’t know what dialysis is (I didn’t), they would stick a tube in my neck and filter all the blood in my body through it, as my kidneys should be but are not doing. My kidneys are filtering water just fine and fluids that I intake, but they are not filtering out urea and other wastes. The nephrologist said that nothing could ever completely replace the kidney, but dialysis does a pretty good job. Also, today my lungs have swollen and my blood pressure has gone up and the doctors are concerned about these things as well. So for today, please pray:

1. For my kidneys to improve faster so that I don’t have to do dialysis!
2. For my blood pressure to go down. It’s at about 141/94 right now.
3. For my lungs to go back down as well. My breathing has been labored all day and I miss breathing normally.