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Tuesday, June 26, 2012

Three Doctors

Sorry to be so late in updating... this will be a somewhat epic-length post, as I went to see three doctors this week!

Last Saturday, I started tapering down off steroids by 10 mg. By Sunday night, I was in a ton of pain again. I didn't really sleep, and I was starting to get upset because of how much pain I was in. I chose to see this as a positive thing. Since coming home from the hospital, my pain had been under fantastic control - to the extent that I had barely been taking pain pills for "breakthrough pain." I had been given two strengths of breakthrough pain pills, and I hadn't even filled the script for the stronger med. I had an old bottle of it with a few pills left, so I figured I could use that if I grew desperate. Sunday night was my desperate night, and I took the pills! Monday morning, I decided that I did need to fill that script after all! 

On Monday, I went to see Jack Black (Pain Dr) for a follow up. He was very sad to hear about my insane epic-length hospital stay, but happy that my pain has finally been under control with the new med. He had discussed going on this med with me a few months ago, but at the time, I wasn't ready to take the plunge. This med has really been a life-saver for me, and I'm very thankful that I went on it!

Jack Black gave me some trigger point injections to help with the pain in the neck/shoulder area. Unfortunately, I don't think that they really made much of a difference, but at least we tried. He also gave me a script for a pain relief gel to put there. It has turned out to be somewhat helpful for the pain, but it does not absorb, so it sticks to clothes and leaves a residue everywhere it touches.

I had to catch him up to date on a 5.5 week hospital stay, and I was added on to his schedule, so after quite a long wait, it was a long visit, then after he left, I thought of one more question. After waiting about 20 minutes to get an answer, I decided that they could call me - I had been there for 3.5 hours.

Tuesday morning, I had a 10:00 appointment with the new Rheumatologist. It lasted until 1:30. The Nurse Practitioner came to get me from the waiting room herself right at 10:00 on the nose. She took my history, went over my medical records with me, and examined my joints for an hour and a half! Then she had me read what she had typed up to make sure it was accurate. Very thorough.

Then the doctor came in, accompanied by a med student, who awkwardly stood in the room and didn't say anything. ;) The doctor's opening comment was: "Wow, on paper, you sound like you should be dead! You look really amazing in person for what's going on with your body!" I am not quite sure how to respond to that. You've heard of invisible illnesses? Well, I have one, and guess what? I am really quite tired of being told that I don't look sick... even by my doctors when I was in the hospital! Ugh. Sometimes I wish I looked and acted as sick as my body actually is. I think that might help with the doctors not really believing me when I say something's wrong or that I don't feel well. But then again, at least I still have my looks! ;) Just kidding. I look like an inflated chipmunk right now, thanks to the steroids. My face and body are so swollen (nearly 20 lbs up! And 34 pounds up from my lightest weight back last April!). So I was flattered that she thought I look good.

Aside from that comment, I really liked the doctor. They are organized - they printed me a list of my meds, and highlighted the ones that they were changing the dosages on, and put a little arrow to indicate if this was an increase or a decrease in the medication. She also printed me a list of what she wants me to do. I like lists. My old rheumatologist did lists, too, but not to this extent.

She discussed several treatments that she would consider putting me on. Some of them were a little scary to me, and I told her that. She said, "We could change up your medications, but what I'd really like to do is maximize the therapies you're already on first. I'd also like to give your body about 2 months to see where it's going to settle out after all the trauma you've been through at the hospital for the past several weeks." I thought that this was a very good approach.

It is time to taper off the steroids. She planned a very slow taper - dropping 2.5 mg every week - which will take over 12 weeks (later, after she called my Endo Doc, they changed this to dropping every 5 days). She is almost doubling the dosage on my immunosuppressant shots, and we are going up by 50% on one of the nerve pain meds. I need to take a vitamin every day and stretch all my joints every single day. She said that with arthritis, you either use it or lose it, so it's important to stay limber.

She told me that the shots can take up to two months to show any effect. Also, she said it's normal to experience increased pain for about a week every time I drop on the steroids... and I'll be dropping every 5 days. So, I asked her what I do in the meantime as I taper off steroids and wait for the shots to kick in. She said that I have pain meds for a reason... this is the time to use them if needed until we get the inflammation under better control. I truly, truly hope that the shots will help so much that I'll be able to get off pain meds!

She wanted to get a bunch of labs, so on Thursday, I went to my PCP. This appointment was only 2.5 hours. ;) She was very sweet, as always. I had a lot of questions and concerns, so it was very helpful to pick her brain and get her perspective on how and where things are going. Both she and my pain doctor  indicated that these abdominal infections may continue to occur intermittently throughout my life, in addition to having to deal with my arthritis and adrenal issues and POTS on a chronic basis. Sort of depressing, but I was glad that they were honest with me.

Okay, I think that this was about long enough, haha, so I'll just wrap up by saying how glad I am to be home again!! The meds are now on a very reasonable schedule, which is great. Most nights I am sleeping, although there have been a few nights of difficulty sleeping due to pain. Overall, I am feeling better and stronger each day! Thank you for your prayers and encouragement!

Hannah ;)

Tuesday, June 19, 2012

My Cups Runneth Over

When you get home from the hospital, the first order of business is to go to the pharmacy and fill all the new prescriptions that you need (the second order of business is to remove all hospital armbands, and the third order of business is to scrub the hospital tape residue off all sites on your body where they put sticky stuff, and the fourth order of business is to find a new home for all those medicine cups you saved throughout your hospital stay).


My mom graciously went to the pharmacy for me. I am super weak and stuff these days. I told her which prescriptions I needed (most of them I had already at home in my extensive home pharmacy!).  One of the medicines is a liquid.



 There were some significant issues (still ongoing) with obtaining the correct amount of the prescription (Misinformation were involved... that should tell you all you need to know...), but my mom was able to get a small bottle. The doctor had written for a 0.5 ml dose. Here's a 5 ml dose on the right:

Now imagine 1/10 of that. Um, hello! I had been taking this medicine in the hospital, and I knew it was supposed to be 5 ml, but my mom didn't know. The pharmacy doubted that the 0.5 ml was correct, and so they called Dr. Saturday's office to check it out, but were mistakenly told that, no, I was supposed to take 0.5 ml.

Once my mom got home and explained the situation to me, I knew that this wasn't right, and the "month supply" of the med would only last a few days if I used it at the proper dosage. It was evening by this time so, I called Misinformation the next day. She checked with the doctor, and yeah, it should have been written as 5 ml. I am still not quite sure how they made such an error! Just imagine if they went 10x in the opposite direction - 10 x too big - that would be enough to poison you! Scary!

Misinformation told me that she faxed in the corrected order, but when I went to the pharmacy yesterday to pick up the med, they had absolutely no record of it ever being sent over. The pharmacist had me fill out a paper request for the med that they would fax to Dr. Saturday's office. I also called and left a message with Misinformation requesting that the prescription be sent to the pharmacy. She called me back today, and said, "I did TOO send it to the pharmacy!!" I asked when, and said I'd call the pharmacy again, but as of yesterday evening, they had no record of it.

I called the pharmacy again, and they still said they'd never gotten a prescription of the med. I called Misinformation back and said, "Maybe you sent it, but the pharmacy did not get it. Can you call it in again, please?" She refused quite fiercely. We ended up on a 3-way call with her, me and the pharmacy. The pharmacy confirmed that they never received the order, and Misinformation yelled at THEM on the phone about it for awhile. The pharmacist nicely asked if she could just fax it over again. She said, "No, I got a fax from you today requesting that I fax a script for this med over! How could I get that unless you already had a script?" I explained that that request was from ME from yesterday... but she didn't listen. Anyways, the pharmacist finally got her to calm down enough to agree to call in the medication again. Hopefully I can pick it up soon! Ooh the drama!

Here's the funny part of the story. As my mom checked out with the little bottle of syrup, the pharmacist asked:

"Now, do you need any little measuring cups for dispensing the medicine?"

"No," my mom replied, "I think we have a few at home."




Hannah ;)

Friday, June 15, 2012

HOME!

I am home!!!!!!!!!!!!!!!!!!!!!!!

Again, I have to kind of apologize for not being the greatest at keeping the blog up to date. So much has been going on, and I have been so very, very sick that it just hasn't been possible to blog.

The pain med switch has ended up being the best decision ever made. I am so thankful that the Lord basically backed us into a corner and left us with no other options. The first day was a little rough, as the med has to build up in your system. Once it got to a good level, though, I felt MUCH BETTER! My blood pressure and heart rate went back to non-dangerous levels. I SLPET through the night, I napped during the day, I started to feel like a human being again instead of a crazed-with-pain-sobbing-sleep-deprived-insane-feral Hannah. Not to be dramatic or anything.

The difference was extremely marked, and noted by every single person involved with my care.

And we were all very thankful.

After a few days of weaning off the other meds and watching me to make sure I remained stable (and I did!), the doctors felt comfortable discharging me to follow up with Rheumatology and Pain Management.

The Pain Management NP came in on Wednesday and we were both all smiles. I was so relieved to be in less pain. He was so relieved that I was in less pain. He sighed and smiled and confided, "Oh, I am SO glad that this plan worked. If this didn't work, we didn't have any idea what else to do to help you. I had consulted with my doctor and others, and this was a stab in the dark. We were very concerned that we'd never be able to get your pain under control."

This was NOT very reassuring to hear, haha! It just makes me thank God all the more that He DID allow it to work. I thanked the Pain NP profusely for his help. Honestly, this is the best pain control I've had in months. There's a baseline of pain relief in my system that doesn't make me feel drugged or loopy - just less pain! If I need to, I can still take a pain pill on top of the med, but the pain is not like it was.

I still have a high WBC, my labs reflect that I'm anemic and malnourished, as well as indicating some possible new endocrine and autoimmune issues, I'm still running daily fevers and night sweats despite the high-dose steroids... The Colorectal Surgeons weren't up to the task of sorting all these issues out - I will need to get a non-surgeon to take a look at all that. ;) I am absolutely confident that just being at home will allow me to heal up and get much healthier.

Where I go from here.... basically, I have some kind of systemic autoimmune inflammatory process going on... Rheumatology is the specialty that is supposed to manage this in the long-term. I made an appointment with a new Rheumatology office. Making an appointment with these people is very challenging. I began calling on Monday, and continued to call daily until I got a live person on Wednesday. I explained that I'd been in the hospital for 5.5 weeks and my discharge was contingent on securing an appointment with a Rheumatologist in the next week. The lady dryly informed me that the earliest available appointment was in late August, and she did not have the time to schedule me today. I could expect a call back from her in 1-2 weeks to schedule an appointment. Then she hung up.

I was, um, surprised, to say the least! And a bit miffed, but I just kept trusting God... and later that day, someone from the office called me and set me up with an appointment to see the Nurse Practitioner next Tuesday! What a miracle! The process of finding a Rheumatologist who will "work" with my personality, set of health issues, lifestyle, etc, can be a major challenge. I am praying that this visit will be a good one that will yield some answers and a good plan.

I felt like a celebrity as I was wheeled off the floor and down to the car... everyone waving and smiling at me... I don't know that I've EVER been so happy and thankful and excited to be going home!

Since arriving home, I've set up several follow up appointments with my specialists, cleared up some steroid questions with the Endo Doc, and organized my meds. I now have a CRAZY med schedule. So many different meds. But it is now much better organized than it was at the hospital, where I literally received a med EVERY SINGLE hour throughout the day and night. Now it's much, much better, but it is still like 15 different meds several times a day. Aaah! I will be excited to see if I can pare down on some of these meds very soon.

Please keep praying! The hospital leg of the journey is ended for now... but the journey continues... I now need to find doctors who will work with me, find treatment(s) that will work to get and keep my body where it needs to be, wisdom and patience for dealing with the MOUNTAIN of bills and paperwork, and rest and healing and nutrition at home!

I am SO incredibly blessed and thankful for each one of you who follow my journey... who pray... who root for me... please know that you make a HUGE difference in my life!

Also, please, please pray for my IBD buddy Laura. She is going through unimaginably difficult times right now. Please pray for strength and endurance and relief and encouragement as she faces incredible pain, disappointment, and awaits a big operation.

Hannah ;)

Monday, June 11, 2012

Week 5 - Glimpses of Hope

Late last week, I had a Gallium Scan to check for an abscess... this is very cool. On Thursday, they took a vial of my blood. They rushed the vial in an unmarked armored vehicle to a secret laboratory, separated the white blood cells out, tagged them with a radioactive isotope, and returned the vial to my bedside, where I was re-infused with my own cells, now tagged. I kid you not.*

On Friday, they scanned my body. Everyhwere the tagged white cells go should light up like Christmas lights in your body, so any area of infection will show up in bright white. My test showed NO areas of increased white cells - NO Christmas light effect.

This is good and bad. On the one hand, I don't have an abscess! I have a clean bill of health as far as intraabdominal/pelvic infections are concerned. Yay! On the other hand... I have this extremely elevated white count, fevers, and incredible pain. And we don't have a clear explanation for why this is.

The last several days have been unbelievably hard. Probably some of the hardest I've ever faced on my journey with UC. I have been in so much pain without getting any relief from any medication, stretch, ice, heat, walking, rest... I cannot sleep due to the pain. My blood pressure has been dangerously elevated, partially due to steroids, most likely, but also from the stress of the pain. My heart rate soars into the 140s as my pain spikes. I have basically been pacing, crying, and completely incoherent about 80% of the time due to the pain. It is unimaginable.

Nearly as frustrating has been the inability of the doctors to understand or treat the pain. Pain medicine that would   knock me flat on my back seems to have no impact on my body at all. It is muscular pain in my shoulders and neck. I have NO idea why it hurts so much there. The doctors can find no explanation for the pain... so they start to look at me a little funny. I KNOW something is objectively wrong. Every time when my pain spikes, my white blood cell count spikes. The general consensus is that I am having a severe systemic autoimmune inflammatory reaction. Basically, my body has gone haywire and is attacking itself all over the place.

I spoke with a Rheumatologist, who says that, in addition to having arthritis, I have inflammation of all the tendons that attach the muscles to the bones. Additionally, I have some kind of crazy muscle pain. They are throwing around diagnoses like fibromyalgia, complex regional pain disorder, etc, but none of the diagnoses seem to fit. Apparently my body just does things in its own special way... including coming up with new autoimmune disorders!

With the knowledge that I don't have infection, but rather an autoimmune problem... the doctor this morning gave the "all clear" sign... and... after five long weeks... we are starting to plan for DISCHARGE!!!

The treatment plan is as follows:

1. They changed my IV steroids to oral. I have gained 15 lbs from the steroids already! My face is so round; I think at least 5 of the pounds are in my cheeks! ;) I am eating like a prize fighter... I haven't eaten this much since... before I got sick with UC! I am sooo hungry all the time, and eating is FUN and food tastes SO good, and my stomach doesn't hurt after I eat. This is aIt least partially an artificial response because of all the steroids, but I think that some of it is that my stomach is just a lot happier post removal of the grapefruit of infection!

2. I was restarted on methotrexate shots. These are a chemotherapy medication, used at a low dose to suppress the immune system a little bit so that it will quit attacking me! Apparently this med is a bigger deal than I thought. I usually give myself my meth in a little shot. Well, this was quite a production. They sent up not one, but TWO nurses from the oncology floor. They covered themselves in gowns and gloves and masks, carried a huge yellow HAZARDOUS WASTE bag, and proceeded to drape my bed and body with sterile drapes! They let me give myself the shot, but cringed that I don't wear gloves when I "shoot up" at home. I am not really sure why it's okay for me to put something inside my body, but I have to wear gloves to prevent it from getting on my skin?

3. I will get in with a Rheumatologist and they will decide what other treatment I need to be on long-term. The Rheumatologist here at the hospital suggested Remicade, Humira, or Cimzia. Lots to think about here... In addition, I am on a new nerve pain medication.

4. I am switching from a MILLION pain medicines to just one. The meds aren't even really helping, and it feels like they have no impact on my body. So, the best thing to do is replace all the meds with ONE med, and slowly taper down off that med. Over the next several days, I will be making the switch from the million meds to one. This must be done in the hospital with close monitoring. Please pray for all to go well. They tell me I will be fairly uncomfortable as they take me OFF the meds I'm on now before the new meds kick entirely in. They don't want to overmedicate me - I could stop breathing - which isn't really what we're trying to accomplish here. ;)

There's more, a lot more, but those are the highlights! I am sorry I have not done the blog justice lately, but things have been so unbelievably hard that I've been completely unable to blog!

I praise God for seeing me through this week. I am incredibly blessed by my dear family. They have been my rock and God used them in a mighty way to bring me through this past week or so. I honestly do not know what I would have done without them. My mom was at my side 24/7 (she is now soooo sleep deprived...), Sarah listened to me bawl my eyes out and brought me foot scrub and hair stuff and made me feel like a pretty girl again... Joseph comforted me, and he snuggled in my hospital bed with me to watch TV shows... Dad came to be with me and make everything better, because that's what Daddies do...

And friends! So many people have prayed, visited, sent cards, messages, texts, and some outrageously amazingly wonderful things... I am blown away by your love!!!

I am so very thankful that things are starting to look up a bit - that we are beginning to plan for home!!!

God has been by my side throughout the sometimes horrific events of this week. A Psalm that has been especially on my heart is Psalm 42. He talks about his soul thirsting for God like a dear pants for water. His tears have been his food day and night. Okay, check. Boy, can I relate to this guy.

He talks about how he remembers how he used to go to God's house and be joyful and happy.

So, he asks himself:

"Why, my soul, are you downcast?
Why so disturbed within me?
Put your hope in God, for I will yet praise Him.
My Savior, and my God."

He reminds himself of God's greatness, of what God is capable of, of what God has done, of how God has been with him... then laments that God has forgotten him! He is suffering and people are noticing that God isn't with him! What's happening? Where is God??

Then, one more time, he instructs himself again:


"Why, my soul, are you downcast? 
Why so disturbed within me?
Put your hope in God, for I will yet praise Him.
My Savior, and my God."


...And that's the end! The Psalm doesn't say, "And then God came and fixed everything, and all was right with the world once more." The situation didn't change. But the Psalmist was working really hard at changing his attitude! Don't put your hope in this situation or in people! They will always disappoint you. My hope is in God. My hope is a sure hope of eternal life. This hope is a living hope, through the resurrection of Christ Jesus from the dead. And this hope will NOT disappoint us, because God has poured out His love into our hearts by the Holy Spirit, whom He has given us (Romans 5:5).

Hannah ;)

*Okay, the part about the unmarked armored vehicle was conjecture. And the lab may or may not be secret. But the rest - truth.

Thursday, June 7, 2012

Amusement

Sorry I have been so lax about posting. I'm having some dark times and depressing moments as the doctors are really at a loss for what's going on with me. They doubt that there's much they can do for me, either. Anyways, it's not so fun to post about that kind of stuff, so I just didn't post for awhile.

Today I thought I'd share two vignettes of hospital life.

A few weekends ago, when my white count began to elevate, the doctors decided it would be wise to remove my PICC line (Peripherally Inserted Central Catheter - a special IV that is threaded from your arm into your heart). It is a foreign object in your body, so it can carry infection. They pulled it out, and I had to make do with peripheral IVs for a few days.

After those few days, two people from the IV team came to place a new PICC. The nurse decided to place the PICC in my left arm - which is a first for me. My other 5 PICCs have been in my right arm. I mentioned how she didn't really numb me that much, and that it took her two tries and some digging to successfully place the line.

After a few days, I began to notice a rainbow effect on my arm.



And then, I was riding in the elevator with a nurse. She recognized me and asked how I was doing. My standard reply to that is: "I'm still here." ;) She asked how my line was. I showed her my arm. She reminded me that SHE was assisting with the placement - it was the OTHER nurse who did the actual incision.

She remarked that the bruising wasn't actually from the line placement. She said that it bruised because she used numbing medicine prior to placing the line. I might believe that... except that I've had 6 PICC lines, and this was the first time I've ever achieved this techniciolor result!

How do I pass the time? I am constantly busy responding to texts, emails, Facebook messages, keeping up with Bahlor, visiting with my guests, talking to doctors, techs, nurses, transport people... and taking medicines.

I have been saving the little cups they use to distribute pills. After four and a half weeks, here's just SOME (not even half) of the cups I've collected. I like that you can see the skyline in the background.



I have yet to get bored here in the hospital! God is good.

Hannah ;)

Wednesday, June 6, 2012

Exciting Times

It's been exciting around here lately. We don't like excitement in the hospital. We like slow, boring days in the hospital. That means that the only thing that's happening is HEALING. The phrase for the last several days is probably closer to something like CRISIS MANAGEMENT.

Thursday found me hurting and feeling gross. My pain had been gradually slipping out of control, and Thursday night was another sleepless night. My nurse and I were concerned because I was taking the maximum amount of all my medications, and they just weren't touching the pain. So on Friday, I got a consult with a Pain Management Nurse Practitioner. The only downside was... he was out of town, and wouldn't be back until Monday. He agreed to talk to my nurse over the phone and come up with a plan for pain management for me. Since it was just the two of them discussing me over the phone without much prior knowledge of my history... the plan wasn't well-tailored to my body's quirks. This wasn't anybody's fault, really... I have a complicated history and several factors that make choosing medications really tricky.

The foundation of the plan was a medicine that was supposed to provide a baseline level of pain relief by staying in your system for a long time. Unfortunately, I can't absorb this type of medication due to my lack of colon! They were never able to get ahold of the guy again... to make a very long and incredibly painful story short, my pain went totally out of control on Friday afternoon, and I didn't get any sort of relief until the wee hours of Saturday morning. It was an extremely difficult night.

The doctors were very shocked at my body's lack of response to huge amounts of medication. Apparently the average bull elephant would have been comatose after all the drugs they gave me. They are also at a loss for the exact cause of the pain. I have pain in my belly, but the most severe pain is this muscle pain localized in my neck and shoulders. So weird. thankfully, the pain management NP got back in town. After another extremely trying night and morning, we have hit upon quite the cocktail of meds that should

I have a very elevated white count, low grade fevers, severe pain, and malaise. There are basically two possibilities for the cause of the symptoms: a systemic autoimmune inflammatory response, or an infection. On Saturday, Dr. Saturday decided to start me on very high dose IV steroids, which should help if this is autoimmune inflammation. He also got Infectious Disease involved to rule out the abscess seen on last week's CT scan. They MRI'd me on Sunday, and thankfully, all looked well, I think... or at least improved to the point where I don't need a drain placed. So it looks like this is autoimmune, not infection, but they really don't know for sure, and are still suspicious that there really is another abscess somewhere they can't find. They are keeping a close eye on me to make sure that I don't go septic on them or something.

Good news: I can EAT!!! I have the munchies from steroids, which is kind of fun, because I don't usually enjoy eating this much! I eat and eat and I don't really feel sick and my stomach doesn't really hurt! This is so amazing! And fun! I'm gonna get fat. ;)

On that topic... I have gained over 15 lbs of fluid weight! The swelling began even before they started 'roiding me up. I feel like I'm wearing a fat suit! At its worst this weekend, my legs looked like tree trunks, and my face is round like a pumpkin. I'm pretty sure that this is mostly a factor of poor nutrition - I've had this happen during a bad flare up. My protein levels are a little low - once they go up, the swelling will go down! My blood pressure is also running quite high - from steroids, pain, water retention... so they have to give me meds for that sometimes, too.

Thank you for your patience with me as I went on a blogging hiatus for the past several days! It has been a very eventful week, and I can't believe that I'm STILL here in the hospital.

A good friend was reminding me that I need to focus on the victories along the way. I can:

eat! Lots of food! I am less and less nauseated each day!
walk! I have been very mobile since the very first day after surgery!
Energy! My POTS is basically gone, due to IV fluids and steroids.
Excellent care! Nurses, doctors, technicians, housekeeping... hardly a clinker in the bunch!
Friends and family who text, call, visit, write, bring food (*ehhem* pretzel M&Ms, hint, hint)
God has been so gracious and blessed this hospital stay in ways too numerous to list here. I'm not sure how I can EVER doubt His goodness!

Please pray that God will allow the doctors to get a handle on what's going on with my body! That He would show us what the problem is and make a clear path for treatment.... so that I can go home soon. Please.

Hannah ;)