The Line is Coming Out Today!

I'm scheduled for a 1pm procedure today to remove the PICC under fluoroscopy. Grateful for prayers for no complications and peace as they remove the line - eyes on Jesus and not the blood clots or anything else! And then for power to drink more than 9 ounces a day from here on out so that I can move forward without dependency on IV fluids. 

Thank you all so much! 

Jesus looked at them and said, "With man this is impossible, but with God ALL things are possible." - Matthew 19:26

Facebook Updates

Hi friends,

Once again, I haven't been able to keep up with blog updates. I'm pasting updates from Facebook below and then will follow with a short post.
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January 23, 2014

Hi friends,

Thank you so much for praying for me yesterday. It was a rough day, and I am grateful for how God enabled me to press through. My doctor was quite disturbed that my PICC had been in all this time. Apparently, there was some miscommunication between his office and the hematologists and interventional radiologists involved in my case. Some had said it was okay to leave the line in as long as I was using it and others had recommended it come out. Either way, he made it clear that it should not stay in any longer and is having it scheduled for removal as soon as possible.

He did not believe I should have another line or port placed which leaves me relying fully on the ability to drink. So I am looking at the reality of needing to go from 9oz/day to 32oz/day, knowing that if I can't make it for a few days it won't be the end of me, but it wouldn't be pleasant to add dehydration to the picture.

So here are the big prayer requests:

- Peace and safety during the removal of the line. It should be simple removal (my first one was), but this one has just been in a very.long.time. There is good deal of inflammation in the veins, and the line is wrapped up in multiple clots, so there's that added component of risk. (I'll tell you again when I'm actually scheduled.)

- Faith to keep pressing ahead with taking in more fluids and wisdom to know how to approach it in the most successful way.

- That God would make a way for me to drink sufficient fluids once the line is removed. Nothing is impossible for Him!

- Healing and relief from the unexplained right-sided pain that necessitates much of my crutch dependency. I know God can remove it if that is what's best!

- Sleep and rest for my mind and heart. Symptoms have grown more difficult over the past few days, and I am having difficulty breathing well.

Thank you so very much!
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"I know how to live on almost nothing or with everything. I have learned the secret of living in every situation, whether it is with a full stomach or empty, with plenty or little. For I can do everything THROUGH CHRIST, Who gives me strength." - Philippians 4:12-13

“The Lord is my portion,” says my soul, “therefore I will hope IN HIM.” The Lord is GOOD to those who wait for Him, to the soul who seeks Him. It is good that one should wait quietly for the salvation OF THE LORD." - Lamentations 3:21-26

January 21, 2014

Hi friends,
I know it's been a while since I've updated. I tried to "forget" about things as much as possible over the holidays and really put things off. Well, now things cannot wait any longer. This week is packed with appointments from Rockville to Frederick to Lutherville and places in-between. I missed one today because of the snow, but I'm grateful for a chance to stay home before the next two days.

Tomorrow, I will see my Hopkins GI doctor for the first time since May. He'll likely be encouraged at my progress, but there is not a clear answer for how to "fix" my hydration issue. My PICC line must come out. It had its one-year anniversary a few days ago, and some doctors say it shouldn't have stayed in past July. The line is wrapped up in multiple clots, and the veins are quite inflamed and tired of hosting an intruder for so long. There is still concern and hesitation that placing a port may not be the best course of action right now, and I feel the same way. I have been pushing myself each day to drink an ounce an hour and setting my phone alarm to remind me (let me just say that an hour sure goes by fast!). Some days I've hit 14 oz (including the flaxmilk used in hot cereal or a morning shake), but the average is around 9 oz a day (not even half-way yet). So, I'm facing the reality of not being ready for this line to come out in the hydration-realm but way overdue for it to come out in every other way.

I also met with my nutritionist yesterday for the first time since September, and she is not sure of a solution for the hydration either but encouraged me to do my best to keep up with drinking the ounce every hour.

I've been struggling with breathing difficulty, chest tightness, more pain, etc. over the past few days, and these are possibly additional reasons for the line to come out.

My labs also show that things are not improving too quickly, and I need additional iron infusions, among other things. Despite all of this, and the uncertainty ahead, there is so much to be grateful for...taking a walk by myself "for the first time in forever," continuing to press forward with swallowing, eating an egg and steamed kale every day, and the list goes on....

As I face tomorrow and the rest of the week, I would be so grateful for prayers for strength, wisdom, and faith to follow wherever He leads. God is able to make my body work again. Asking Him to increase my faith and display His power and goodness in new ways.
Let him who walks in darkness and has no light trust in the name of the LORD and rely on his God. - Isaiah 50:10

January 1, 2014

"God's delays don't make things worse. They always make things better." - Tim Keller 

Looking back on the year past, I am amazed I'm still here. God has preserved and kept my life. The path has been harder than I ever dreamed, yet He has never failed me. The mountains ahead are far too daunting for me to climb alone, but I know Who goes before me and who has promised to strengthen my weary frame. I want to praise Him tonight for His goodness and mercy, especially shown when I least deserved it.

Praise our God, all peoples,
let the sound of his praise be heard;
He has preserved our lives
and kept our feet from slipping.
For You, God, tested us;
You refined us like silver.
You brought us into prison
and laid burdens on our backs.
You let people ride over our heads;
we went through fire and water,
but You brought us to a place of abundance. - Psalm 66:8-12

I may not be in "a place of abundance" yet, but that Day will come, and while I'm waiting I can praise Him!

And I want to thank each of you dear friends. Where would I be without each of you? Your friendships are precious gifts to me! He has been so good.

December 21, 2013

Dear friends, thank you so much for your prayers yesterday. It's hard to describe what happened, but basically, I was standing in front of the computer trying to print something when I suddenly experienced a "lurch" feeling in my head and grew instantly weak, heavy, dizzy, hot, and had a difficult time getting words together and out of my mouth. My primary care asked me to go to the ER after I called his office to explain. I thought my blood might have been too thin, as I had just upped my dosage of blood thinner over the past few days, but it turns out I was okay in that area. Labs only confirmed that I am still seriously anemic. I'm not sure what caused the sudden shift yesterday, but I am grateful I was able to come home after five+ hours in the ER yesterday.

I am still struggling with similar symptoms and feel very weak and unwell, but I honestly feel this way quite often. It was just the sudden onset and dramatic difference that had us extra concerned. Anyway, I'm running out of words right now (or the strength to get them out), so I just want to say thank you again for all your prayers, and I hope to make it through Christmas before dealing with all the decisions that are awaiting me.

Love you all!

Choosing Thanksgiving?

Will I choose to give thanks? Even when my heart is breaking? My life (and yours) may be filled with disappointment, unspeakable heartache, and physical pain and brokenness, but there is always reason to choose thanksgiving. Choosing thanksgiving is the path to survival.

To overcoming.
To pressing on through the bleakest of circumstances. 
To not. giving. up.

When I give thanks my heart remembers that despair is not my only friend, that goodness exists, that love is real, and that
there is always hope.


Choosing thanksgiving when loss, pain, confusion, brokenness, or deepest grief speak loudest in my heart is sacrificial. But the irony is that in doing so, in fighting and choosing to search out and embrace what is beautiful and good. To grasp onto those things and say, "thank you." I push back the darkness. Right here, right now, in this dark place the light is breaking in, and I find meaning, life, hope - all things which seemed lost just moments ago.

Giving thanks is not pretending that everything is okay or that the pain is good.
No.
Far from it.

It is a reaching down beneath all that mess and muck to discover that the Everlasting Arms are still the Everlasting Arms. That they are still there.

Firm.
Secure.
Not letting go.

And I give thanks because I am safe. Held. And that security comes to me as a gift. Something I could not buy. Not with all the money in the world. But it cost someone else a great price. Far more than I could ever pay. And because that someone else paid, I am headed toward a Day when all my pain will be eclipsed by glory.

There will be Life. In all its fullness.

Unbroken Joy. Forever
and ever
and ever. 
And for that I cannot help but give thanks.

Where Do I Go From Here?

Hi friends,

A lot has taken place since I last posted, and I haven't been too good at linking my Facebook world updates to the blog world. I have put too many doctor's appointment updates up there over the past few months, so I'm just going to do my best to simply summarize the latest for now.

After visiting two different hematologists and two interventional radiologists (doctors who put in ports, PICC lines, etc.) the following things have become clear:

- My current PICC line should have been removed by now because of the amount of clotting and inflammation that is present. There doesn't appear to be any infection, so the line is still working and safe to use, but it is irritating the vein and preventing the clots from improving.

- A port placement was suggested by the hematologists but highly discouraged by others including the interventional radiologist who regularly puts these in for patients. If the port were to get infected, it would be a whole different story than an infected PICC line, which can be immediately pulled and IV antibiotics started. Not so with a port.

- An attempt to place a new PICC in my right arm was made this past Friday but had to be cut short due to the level of pain and resistance that my body put up. We could try again, but it is not clear whether or not my arm will accept the line until the shoulder region is seen and that only happens once the line placement is already in process. 

Today, my CBC showed concerning blood levels and lowered immune function. It is difficult to know how best to approach my anemia, but I may just need to have an iron infusion this week despite the risks. I'd like to avoid a blood transfusion if at all possible. Tomorrow I will see my hematologist and confirm whether these levels are really accurate or not. In the meantime the doctor says to limit my activity and rest more so my body can keep up.

Thank you all so much for your prayers! I especially need power from God to be able to tolerate drinking more fluids. Without progress in this area I am unable to go without a line or some type of venous access. It seems like a huge mountain, but I know it is not too big for Him! He continues to keep my life.  And I have so much to thank Him for!

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Out of the depths I cry to you, Lord; Lord, hear my voice. Let your ears be attentive to my cry for mercy. I wait for the Lord, my whole being waits, and in His word I put my hope. I wait for the Lord more than watchmen wait for the morning, more than watchmen wait for the morning. Israel, put your hope in the Lord, for with the Lord is unfailing love and with Him is full redemption. - Psalm 130:1, 2, 5-7 

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.