And More FB Updates

So sorry friends that I'm only cutting and pasting from Facebook at the moment. I hope to do more in the days to come.
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September 30, 2013

Hi friends,
Thank you for your prayers! To keep things as brief as possible, my appointment with the doctor who is working on getting to the underlying causes of my condition went well. I was exhausted and feeling sick, but God gave me the strength to communicate. He wants to prioritize building up my bone strength by doing what I can to begin calcium/vitamin D/vitamin K and trace minerals supplementation and introducing simple exercises. He believes that much of the pain and tightness is connected to the state of my bones which he described as "fish bones." Not so comforting. I will likely have additional iron infusions sometime in the near future because the hematologist says I am at 6% of where my iron levels should be.

I saw another doctor this past Saturday (the one who treated my past Lyme), and he is starting me on treatment for my osteoporosis and anemia as well as inflammation throughout my body. He warned me that I will likely feel much worse before I feel better. At least I'm forewarned.

I met with my nutritionist today, and she is helping me put together supplements for the osteoporosis as well as continue working on being able to digest, assimilate, and tolerate foods. It is more complicated being on blood thinners (as many of you know).

My PICC is still intact and being used nightly for hydration, but it has grown very sore and swollen and is showing signs of infection. I may have to get it pulled and have a midline put in which would enable me to continue to get hydration and would not go as far into me as the PICC does. The concern is what will happen with the blood clots if the line is pulled. I need to talk with doctors further about this....

So there continues to be much to pray about and seek wisdom regarding how to proceed. Tomorrow morning I have an early test, followed by PT. I will need much grace, but it always comes at the right time.

I would like to share more, but it's getting late, and I need to run. Thank you all for your care. So grateful for each of you!

September 23, 2013

Thank you everyone! Felt your prayers. The doctor today felt I could leave the PICC in as long as I need it, but I feel like I may need to get a second opinion on that. I'll keep you updated! My arm has been getting sorer lately, but once I adjust my blood thinners it may improve. We'll see...so grateful God is bigger than all of this!

Facebook Updates

Today

Hi friends, I would be grateful for extra prayers today. I have been experiencing increasing issues with my PICC line, and there are differing opinions amongst doctors as to whether it should be pulled or left in longer. The results of my last ultrasound last Wednesday are yet to be confirmed, but it seems I'm still dealing with a serious issue with blood clots around the line. Today, I will see my hematologist at 2:30 and will learn what her opinion is regarding how to best proceed. If we pull the line there is a risk of the clots breaking off and going to my lungs or heart. Then I would likely have to put another line in my right arm in order to get my daily hydration which would likely develop its own clots, and I would have to stay on blood thinners...but leaving the current PICC in also seems to keep the clots from resolving.

I also had a Dexa scan done last Wednesday which labeled me at "extreme risk" for fractures based on the severity of my osteoporosis. This means I need to be extra careful to avoid the smallest falls or accidents.

So, to keep this brief, I would be so grateful for prayers for healing, protection from bone fractures and breaks, and wisdom for what to do with the PICC line and my need for hydration. I don't k now the way through all of this, but I know God isn't surprised and is still at work.

So grateful for your prayers that help me press on....

"And what if trials of this life // The rain, the storms, the hardest nights // Are Your mercies in disguise..."

September 6, 2013

 

Thank you all for your prayers! God is answering them. Still waiting on blood cultures (24-48 hours) but I was discharged around 11:30. My white blood cell count isn't elevated so they think it is just a reaction and not an infection. Praise God!

They did find two clots in my arm and are recommending I have the PICC pulled if they don't show signs of improvement within a week. I also have to call Hopkins tomorrow to see what they want me to do. So I'm still facing some scary things-pulling the PICC could dislodge the clots but leaving it could keep them from resolving-but I know God is watching over each detail and I can lay it in His Hands and trust Him.

Wait on the Lord: be of good courage, and He shall strengthen thine heart: wait, I say, on the Lord. – Psalm 27:14

Thank you again! So grateful.

September 5, 2013

Heading to the ER again with some type of infection in my PICC line. Grateful for prayers. Hard to face more antibiotics and another potential PICC placement. Grateful God has a plan for all of this....

Keep on Keeping On

That's what I'm trying to do these days. It's hard to put one foot in front of the other and keep plodding forward when life doesn't seem to be improving as quickly as you would hope. It's not easy to drag your body out of bed when every part hurts. It's not fun to spend half the night in the ER again. No, none of this is easy, but this life isn't all about easy. It's about pressing on when you can't imagine how you're going to get through another hour. It's about remembering that this life isn't all there is...that this pain isn't forever.

That's what I've been trying to do since I last posted over seven weeks ago. But there are also some amazing things to rejoice in - answered prayers! The two major ones are 1) after a long season of impaired swallowing that would often have me choking on the tiniest sip of water, I am now able to swallow liquids again (and even some tiny pills!) and 2) my weight has increased by 25-30 pounds since May. Many of you might not recognize me, that's how dramatic the change has been. Two years ago, I weighed 65 pounds and was just beginning tube feeds, unable to eat or drink. Now, I have surpassed my goal weight and am no longer on a feeding tube but continue to rely on TPN and hydration through my PICC line each night. I have also been attempting to eat some foods over the past few months and recently met with a nutritionist who would like to help me do my best to transition off of the TPN completely. 

So, this probably sounds very exciting to you, and I do find myself needing to stop and remind myself just how significant and amazing it is that I can attempt these things at all. These things are definitely the result of answered prayer and more! God has brought me so far. So what's next? Well, the reality is that I still have a severe motility disorder which keeps the food that I take in from being digested properly and then moved on through my GI tract. It can be very discouraging to wake up in the morning still full from whatever I ate the previous day. My body is just not able to digest, process, and assimilate my food properly, but I don't want to give up trying. Because my weight is now more than stable and I am able to swallow, I may be able to transition off the TPN and away from the constant risk of infection it presents. But even if I do this, my system is not able to handle the volume of water or liquids I would need in order to stay hydrated, and so I would need to continue that through my PICC line as long as necessary. For the past month or so I have been alternating TPN and hydration from night to night and have developed a significant issue with fluid retention and swelling which does not seem to be resolving too quickly. 

What's the plan? Well, the nutritionist that I recently met with gave me a sample diet to implement as well as some supplements and plans to make adjustments as I go along. It's a very rigid diet that excludes all corn, soy, dairy, gluten, yeast, and sugar which should be pretty easy for me since I haven't had much of those things for five years or more, but my body has grown used to living on sugar (it was the main ingredient in my tube feeds and now my TPN) and as much as I want to get off of it, I think it's going to be a tough transition period. 

I am still on a blood thinner and recently learned that I have a genetic predisposition to form clots. I also have serious osteoporosis and therefore these are two big reasons to avoid falls and injuries. For those of you who are curious, this is why I still ride in the back seat of the car.

I am doing both PT and OT each week and seem to have 2-3 appointments of some sort every day of the week. I'm so grateful for so many of you that serve me by giving me rides. I know it's a lot!

This past weekend, I took the train to visit my brother in Virginia and ended up in the ER for much of Friday night with my PICC line dressing off and the catheter coming out.My chest x-ray showed that the line was still safe to use but it had pulled up more than normal. Basically, its days are numbered. It would be amazing if the day it stops functioning would be the day I no longer need it. Anything is possible for God! But if not, He must have something better in store.

So there is much to be grateful for, much to rejoice in, much to give thanks about. Yet, my present reality is still quite difficult. In many ways, I am less dependent on others than I was even earlier this year - I am able to get around the house and yard with the support of a crutch, make it up and down the stairs in my house, prepare my TPN, and other things, but I am still quite dependent in other areas - I don't drive, can't clean my room, have difficulty making my bed,  I drop things, I can't do much for others, and it is difficult to pick things up from the ground, bend over, or sit for very long. And yes, it has been absolutely amazing to be able to eat some things again, but the steaming peach crisp my family is eating after dinner seems to taunt me. I continue to experience a constant level of pain and complexity of symptoms including severe weakness/heaviness, joint pain, body aches, and strange neurological symptoms. Over the past few days, I have felt like I am regressing in many ways, and it can be so difficult to continue to eat through the scary symptoms or force myself to swallow when I think my throat is going to lock again, yet I don't want to go back. And God keeps calling me forward. 

Practically, this means getting myself on a strict schedule and regimen that will give me the best chance for success with this diet as well as my medicines, sleep, and physical and occupational therapy to build strength. I don't know if it will be successful, and there is no promise that my motility disorder will resolve, but I do know that God is still in control and still up to something better than I can imagine in the midst of it all. 

If you've stuck it out this far, thanks for reading such a long update. I continue to be so dependent upon your prayers. Thank you.

There and Back Again

Hi friends,

Thanks for being so patient with my lack of updates since Wednesday. The past few days feel like a whole week.

To start with, I'm home from the hospital again and grateful. Now backing up to Thursday morning...we decided to leave my PICC line in because it was still functional, and there was some concern about the possibility of dislodging the blood clot if the PICC were to be pulled out. After an iron infusion, a visit with the nutritionist who formulates my TPN, and my first Lovenox shot, I was discharged that evening. Diane Kummer and Patti Brown drove all the way up to Baltimore to pick me up which was so helpful for my family, as they have a number of medical needs right now.

I was told I would have to take Lovenox injections twice a day and then eventually transition to Warfarin (oral blood thinner) which I would stay on as long as I had a PICC in my arm. This presents a whole new set of challenges and mountains to climb, but I'm asking the Lord to give me faith that He IS ordering even these details for good. He knows how it will all work out.

I arrived home around 10:30 Thursday night and after my TPN had been running just a few short minutes both my lines completely clogged. They had been working fine a few minutes before, and I was at a loss as to what to do. I couldn't drink enough to hydrate myself and now had no dependable way to get in my nutrition and hydration. I also started experiencing a small amount of bleeding under my skin (a concern with blood thinners), so I had to call the doctor on call, but she said to just watch it for the present.

Friday morning I tried flushing the lines again but to no avail. My doctor's nurse told me I'd have to come back to the ER since having a clot added a greater risk to everything. So I started packing again, not knowing how long I'd be there.

God truly provided for me by giving me a triage nurse who used to be a PICC nurse and was able to work with my lines to see if she could get them working again. After several unsuccesful attempts, she put in another IV and sent me to x-ray. My mom eventually arrived, and we found ourselves in the exact same room where we had spent Tuesday night. The PA on the other side of the desk did a double take when she saw us. The nurse injected a declogger into my lines which did its work for an hour or so and after that the PICC was once again functional! She also helped me with my Lovenox shot, and we talked with the ER doctor about beginning Warfarin.

I was discharged once again, and my mom and I arrived home around 10pm last night. So grateful I didn't have to stay longer. Despite the drama of the past four days, this has actually been my shortest hospital stay yet.

Today I have had a difficult time getting myself to take my injections, but God has been so patient with me as well as others who have to bear with my emotional messes. Lately, it has felt like every time I start to make progress with something I hit another wall or fall off the horse again, and it's hard to believe I can keep going and find a way through all the added complications. Yet, somehow, in the midst of all this mess, God is here, and He isn't caught off guard or surprised by any of it. How can THIS be the plan? My heart asks this a lot, but He asks me to trust Him still because He knows the way, and He is the best Guide.

Thank you all for your prayers. I cannot thank you enough. They will continue to be such a help in the days ahead as I try to navigate through these stormy seas. It's a good thing I have a Captain who knows where to take me. Just pray I don't go kicking and screaming.

Love you all!

Facebook Updates from Hopkins

July 9, 2013 at 1:10am · I am in a bed in the ER but am still waiting to see a PA or doctor. In the meantime my g-tube decided to pop out so now we have to stick something in so the stoma doesn't close up until we decide what to do. I had a traumatic experience with this at Mayo so grateful for prayers.
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10 hours ago · Hi friends, thank you for all your prayers. I haven't slept yet and am getting ready to have my gtube replaced bedside. Prayers for this to be successful and not too difficult are much-appreciated. I'm on IV Heparin now but still waiting to hear about the PICC. My GI symptoms have been very challenging, and I've been teary but God is sustaining me. Thank you for praying.
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30 minutes ago · Thank you all so much for praying. The g-tube was not able to be re-inserted as too much time had passed since it came out so the stoma has begun to close and is no longer big enough to hold the tube. I could have a procedure to put it in again but I am going to hold off on that at the moment since it would require a new incision, etc.

Tomorrow morning the doctors will be meeting to decide whether or not to remove my PICC line or keep it in. Apparently there are some doctors who believe it should come out because of the clot and others who believe it is safer for it to stay in as long as I remain on blood thinners.They are running labs quite frequently to get me to the right therapeutic dose of iv heparin. Then when I go home I would have to initially continue with blood thinner shots until I could take enough of a blood thinner pill to transition off the injections.

At the moment, I am facing a number of hurdles...increased pain that seems to be connected to the heparin, no longer having a g-tube to use for venting, no sleep, the potential of being on blood thinners for the unforeseeable future, unsure if my PICC is still functional or not, unsure where my nutrition will come from, and the list goes on.... Much is unsure but there is also much that IS SURE. God has carried me this far, and I know He is not going to leave me now. He is my Hope.

Thank you for helping me be strong in Him when I have nothing left. I am just so aware of how much I need your prayers to hang on and persevere. Let's keep trusting Him! He knows what is BEST especially when I can't see the next step.
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"...my hope, LORD, is in You."- Psalm 25:22

“Blessed is the man who trusts in the Lord , whose trust IS the Lord." - Jeremiah 17:7

Heading to the ER

Hi friends, I'm on my way to the ER at Hopkins with a serious blood clot and my PICC line has to come out.

Prayer requests:
- Wisdom to know whether to put another PICC in the right arm (if I could eat and drink enough I wouldn't have to have it!)
- Grace for the removal of the clot, the blood thinners, etc.
- That they could also determine what's wrong with my g-tube and fix that.
-For a safe removal of the clot, peace, and wisdom for all involved.

Thank you so much! God knows just what He's doing and it will be for good.

Brief Updates

Here are a few Facebook updates...real posts coming whenever I can. 

July 1, 2013

Hi friends, Still coughing but getting through that virus. I've scheduled my first HBOT session for next Monday at 11:45. Praying I can go through with it and then do it consistently over the next month. I had a PT evaluation last week and plan to continue with that as well. Unfortunately, my g-tube accidentally got yanked last week and it may have become displaced. It has been giving me a lot of trouble ever since, and I may end up having to have it re-positioned. I'm still seeking clarity and direction on the next steps, especially when it comes to trying to get off TPN. I upped one of my meds the other day and plan to start another one this week.

There is much uncertainty, and I am so quickly tossed about, but God is an unshakable Rock. All else may shake and fall away, but He remains, firm, steady, immovable. My faith is small, but He keeps it. Thank you all for helping me press on again and again.

Today I want to thank Him for...the kindness of a friend who switched her PT appointment with me last minute when I was running late so I could still have an appointment. watching Epic with my sister, Tiffany. being reminded that we have a promise-keeping God. the assurance that nothing is wasted.

June 24, 2013

Well, this was going to be the week that I started HBOT treatments, new meds, and began focusing specifically on whatever I can do to get stronger. But I came down with a virus a few days ago and that has put everything on hold. Sometimes it seems like every time I try to implement a plan and press forward I have to go 20 steps backward first... you all have experienced this, haven't you? Right now it's quite discouraging, but I need to remember that it's all still going according to HIS plan, and His is so much better than mine. I can trust Him with all the setbacks, too.