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!
Saturday, July 13, 2013
Thursday, July 11, 2013
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.
-----------------------------------
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.
----------------------------------------
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.
---------------------------
"...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
-----------------------------------
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.
----------------------------------------
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.
---------------------------
"...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
Tuesday, July 9, 2013
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.
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.
Monday, July 1, 2013
Brief Updates
Here are a few Facebook updates...real posts coming whenever I can.
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.
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.
Saturday, June 22, 2013
What Happened at Mayo...
The Lord will keep you from all harm— He will watch over your life; the Lord will watch over your coming and going both now and forevermore. - Psalm 121:7-8
This was my experience over the four weeks I spent in Scottsdale, Arizona, May 11 through June 9th. I expected to stay for a week or two at most, but it turned into almost a month, as I watched God make provision after provision for me to stay longer and complete various tests.
I spent most of my days at the Mayo Clinic seeing specialists, having tests done, and then having more tests done. Everyone was very friendly and kind, and the volunteers at Mayo were wonderful, along with all the doctors and nurses. I saw a GI motility specialist, a neurologist, an infectious disease specialist, a psychologist who taught me biofeedback breathing techniques to cope with pain, a dietician, a complementary medicine doctor, and an allergist/immunologist. I had at least 10 or more tests done in addition to labwork. There were so many mornings and moments when I couldn't imagine how I was going to make it through the next ten minutes, let alone a day full of tests and appointments, but every time, God was so faithful to pull me through to the next step. Each night, I'd find myself at the end of the day once again, amazed at His unfailing faithfulness once again.
My autonomic nervous system has some neuropathy but that's to be expected with whatever is causing my underlying condition.
I am allergic to cats, grasses, ragweed, dust mites, and mold and have asthma symptoms so they'd like me to start using a daily inhaler. This may be part of the reason for my shortness of breath.
I was told I was anemic, had Chronic Fatigue Syndrome, and Fibromyalgia, but none of this was new for me. I had two iron infusions during my time there and am scheduled to potentially have two more at home. I continued to stay on TPN for my nutrition for 12 hours each night (intravenous feeding), but they replaced my g-button to my stomach with a longer g-tube for the purpose of venting (releasing air/pressure from the stomach).
Thankfully, other things were ruled out through the tests such as a more serious muscle disease, immune dysfunction, etc., but they were unable to determine the underlying cause for these conditions.
I was encouraged to take every step possible towards better health, including using a recumbent exercise bike for a few minutes a day, doing breathing exercises, taking a drug that may help with motility, getting better sleep, and trying to see what my tolerance is for sipping liquids (an ounce per hour) and building up from there. These are all great things which will definitely help me if I am faithful to implement them, but I believe there are other things I need to add to this list as well.
Although I have been ruled out for some of the most common mitochondrial diseases, the neurologist recommended I seriously consider having a muscle biopsy to test for other mitochondrial diseases or have one of my siblings do the biopsy. This is something we could consider down the road.
I had a follow-up appointment with Dr. Mozayeni here in Maryland this past week, and he believes he can help me move towards health with some very specific treatments. The first thing he'd like me to do is to have Hyperbaric Oxygen Treatments (HBOT) three times a week for several weeks to a month. The hope is that the extra oxygen that is made available to my cells while I spend time in the pressurized chamber will bring healing to organs, cells, decrease inflammation, and possibly increase my GI motility. He believes I have some type of protozoans in my system which most likely came with my original Lyme disease and babesia infection and are continuing to make me sick. There was evidence of this on a blood test I recently had done. I also may have a fungal infection. With either one, I would need to be treated with strong drugs, and my system is not strong enough yet to handle these. In the meantime, he wants to do all he can to build me up by doing the HBOT, improving my sleep, regulating my thyroid, and getting more protein into me.
I am also praying for clarity and faith to step out in a specific path when it comes to trying to get my body to accept food/drink and determine what diet could be the most successful/healing. I am still leaning towards the GAPS diet, but diets high in fat are very difficult for people with motility disorders. I have been trying some baby food squash and other non-dairy and low fiber foods and am so grateful that I've been able to swallow these things, but it has been very difficult for my system to take them. I've gained a good ten pounds or more lately, and haven't been at this weight since prior to 2008. Now I need to get physical therapy going and get some muscle back.
I could keep going, but I think this post is already getting quite lengthy. There is simply no way I could begin to thank you all for the countless prayers that you have lifted up on my behalf. I hope you know that they truly sustained me and were heard and answered!
It has been hard to consider the path ahead as I realize just how long it could be, but every time I begin to crumple and despair, I hear Him reminding me that I only need look at this present moment. There will be strength for the next one when it arrives. The quote below has been a great source of hope for me lately. I pray it encourages you as well.
-------------------------------------------------------------------------
*I'll try to write a separate post on some of my non-medical highlights from the trip. :)
This was my experience over the four weeks I spent in Scottsdale, Arizona, May 11 through June 9th. I expected to stay for a week or two at most, but it turned into almost a month, as I watched God make provision after provision for me to stay longer and complete various tests.
What did I do there?
What did they find?
Well, there were several things that came to light but nothing too surprising. One of the most significant discoveries is that my small intestine has a significant motility issue and is quite slow (not a surprise to me but now it's actually documented). The emptying study that revealed this was also supposed to give information on the colon, but since the capsule of the radioactive material that was supposed to coat the GI tract never left my stomach, they were unable to collect data on that portion of the test.
My autonomic nervous system has some neuropathy but that's to be expected with whatever is causing my underlying condition.
I am allergic to cats, grasses, ragweed, dust mites, and mold and have asthma symptoms so they'd like me to start using a daily inhaler. This may be part of the reason for my shortness of breath.
I was told I was anemic, had Chronic Fatigue Syndrome, and Fibromyalgia, but none of this was new for me. I had two iron infusions during my time there and am scheduled to potentially have two more at home. I continued to stay on TPN for my nutrition for 12 hours each night (intravenous feeding), but they replaced my g-button to my stomach with a longer g-tube for the purpose of venting (releasing air/pressure from the stomach).
Thankfully, other things were ruled out through the tests such as a more serious muscle disease, immune dysfunction, etc., but they were unable to determine the underlying cause for these conditions.
Where do I go from here?
I was encouraged to take every step possible towards better health, including using a recumbent exercise bike for a few minutes a day, doing breathing exercises, taking a drug that may help with motility, getting better sleep, and trying to see what my tolerance is for sipping liquids (an ounce per hour) and building up from there. These are all great things which will definitely help me if I am faithful to implement them, but I believe there are other things I need to add to this list as well.Although I have been ruled out for some of the most common mitochondrial diseases, the neurologist recommended I seriously consider having a muscle biopsy to test for other mitochondrial diseases or have one of my siblings do the biopsy. This is something we could consider down the road.
I had a follow-up appointment with Dr. Mozayeni here in Maryland this past week, and he believes he can help me move towards health with some very specific treatments. The first thing he'd like me to do is to have Hyperbaric Oxygen Treatments (HBOT) three times a week for several weeks to a month. The hope is that the extra oxygen that is made available to my cells while I spend time in the pressurized chamber will bring healing to organs, cells, decrease inflammation, and possibly increase my GI motility. He believes I have some type of protozoans in my system which most likely came with my original Lyme disease and babesia infection and are continuing to make me sick. There was evidence of this on a blood test I recently had done. I also may have a fungal infection. With either one, I would need to be treated with strong drugs, and my system is not strong enough yet to handle these. In the meantime, he wants to do all he can to build me up by doing the HBOT, improving my sleep, regulating my thyroid, and getting more protein into me.
I am also praying for clarity and faith to step out in a specific path when it comes to trying to get my body to accept food/drink and determine what diet could be the most successful/healing. I am still leaning towards the GAPS diet, but diets high in fat are very difficult for people with motility disorders. I have been trying some baby food squash and other non-dairy and low fiber foods and am so grateful that I've been able to swallow these things, but it has been very difficult for my system to take them. I've gained a good ten pounds or more lately, and haven't been at this weight since prior to 2008. Now I need to get physical therapy going and get some muscle back.
I could keep going, but I think this post is already getting quite lengthy. There is simply no way I could begin to thank you all for the countless prayers that you have lifted up on my behalf. I hope you know that they truly sustained me and were heard and answered!
It has been hard to consider the path ahead as I realize just how long it could be, but every time I begin to crumple and despair, I hear Him reminding me that I only need look at this present moment. There will be strength for the next one when it arrives. The quote below has been a great source of hope for me lately. I pray it encourages you as well.-------------------------------------------------------------------------
It doesn’t matter how complicated, how desperate, perhaps even hopeless your life has become. No matter how overwhelmed you may feel by your problems, if your trust is in Jesus Christ, you can be sure that he is praying for you now and through that prayer he will provide for you the resources to bring you relief or enable you to carry on.
The most important thing that you and I need to learn about prayer is this: first of all and ultimately, prayer is not something we do but what Jesus does for us.
— Richard B. Gaffin
"Christ, Our High Priest in Heaven"
*I'll try to write a separate post on some of my non-medical highlights from the trip. :)
Monday, June 10, 2013
Home Again
Dear friends,
I am looking forward to sharing with you all the things I experienced and learned over the past four weeks in Arizona. Thank you for your patience with me. Understandably, everyone wants to know what the doctors at Mayo had to say and if they found anything new. Your care and support over this long journey mean more than words can say.
There is much to pray over as I seek to find the way forward. In all honesty, I have not yet been able to go over all my doctors reports or share details with my family. I need some time to process things and determine where to go from here. So, if you see me and want to know all the details I may not be quite up to sharing it all just yet, but please know how grateful I am. Your prayers have helped carry me through this past month.
If you want a brief summary then here it is: Mayo was not able to find anything dramatically new or necessarily "breakthrough material," but I didn't necessarily expect that to happen either. They found some neuropathy in my autonomic nervous system, allergies, and most significantly, a severe dysmotility of the small intestine. I will try to put together a more detailed update as soon as I can.
In the meantime, your prayers for endurance, wisdom, grace for transitioning, and more would be much appreciated. The same God Who provided for my time in Arizona is the same God Who will provide for every step to come. Thank you for helping me press on.
It is better to take refuge in the Lord
than to trust in humans.
I will not die but live,
and will proclaim what the Lord has done. - Psalm 118:8, 17
I am looking forward to sharing with you all the things I experienced and learned over the past four weeks in Arizona. Thank you for your patience with me. Understandably, everyone wants to know what the doctors at Mayo had to say and if they found anything new. Your care and support over this long journey mean more than words can say.
There is much to pray over as I seek to find the way forward. In all honesty, I have not yet been able to go over all my doctors reports or share details with my family. I need some time to process things and determine where to go from here. So, if you see me and want to know all the details I may not be quite up to sharing it all just yet, but please know how grateful I am. Your prayers have helped carry me through this past month.
If you want a brief summary then here it is: Mayo was not able to find anything dramatically new or necessarily "breakthrough material," but I didn't necessarily expect that to happen either. They found some neuropathy in my autonomic nervous system, allergies, and most significantly, a severe dysmotility of the small intestine. I will try to put together a more detailed update as soon as I can.
In the meantime, your prayers for endurance, wisdom, grace for transitioning, and more would be much appreciated. The same God Who provided for my time in Arizona is the same God Who will provide for every step to come. Thank you for helping me press on.
It is better to take refuge in the Lord
than to trust in humans.
I will not die but live,
and will proclaim what the Lord has done. - Psalm 118:8, 17
Facebook Updates from the Past Week
Sorry, I haven't been able to write lately. Here are my Facebook updates from the past week:
June 8, 2013
Packing...has it really almost been a month? Going to miss so many dear faces here and grateful for the ones waiting back home.
June 7, 2013
Hi friends, back at Mayo for my second iron infusion. Larger dose this time over the next two hours. Didn't feel well with it last time but God always gets me through. I get weak, dizzy, short of breath, queasy, etc. but grateful I'm not having an allergic reaction. Going to track down records after this and then I'll be finished for now. Hope to fill you all in more in the days ahead.
June 6, 2013
Sorry for not updating yet but back at Mayo now for an appointment and then two back-to-back pulmonary tests. Feeling pretty horrible and need His strength to communicate and go through the tests. He always gives just what is needed! Love you all.
June 5, 2013
On the way to Mayo for two more tests that they were able to squeeze in today. Answered prayer! Struggling with pain from Monday's procedure but God is sustaining me.
June 4, 2013
"With Christ in the vessel, I smile at the storm." -Streams in the Desert
Christ said, "Let us go to the other side" -- not to the middle of the lake to be drowned. -Dan Crawford
Thank you all for praying. I felt like the waters were going over my head this morning, but once AGAIN, God was faithful and brought me to "the other side." Am sore and worn out from the procedure and still facing all my symptoms, but now I have a new tube in for better or worse. Not sure what I am going to do from here but just taking it one moment at a time. Can't fly out tomorrow but sometime soon. So grateful for each of you and amazed at His mercies today in the midst of it all.
June 3, 2013
Hi friends, had an unexpected issue with my g tube this morning and am headed to the hospital for a procedure to have it replaced. So grateful for prayers as this is all quite unexpected and difficult to press through. Thank you!
June 8, 2013
Packing...has it really almost been a month? Going to miss so many dear faces here and grateful for the ones waiting back home.
June 7, 2013
Hi friends, back at Mayo for my second iron infusion. Larger dose this time over the next two hours. Didn't feel well with it last time but God always gets me through. I get weak, dizzy, short of breath, queasy, etc. but grateful I'm not having an allergic reaction. Going to track down records after this and then I'll be finished for now. Hope to fill you all in more in the days ahead.
June 6, 2013
Sorry for not updating yet but back at Mayo now for an appointment and then two back-to-back pulmonary tests. Feeling pretty horrible and need His strength to communicate and go through the tests. He always gives just what is needed! Love you all.
June 5, 2013
On the way to Mayo for two more tests that they were able to squeeze in today. Answered prayer! Struggling with pain from Monday's procedure but God is sustaining me.
June 4, 2013
"With Christ in the vessel, I smile at the storm." -Streams in the Desert
Christ said, "Let us go to the other side" -- not to the middle of the lake to be drowned. -Dan Crawford
Thank you all for praying. I felt like the waters were going over my head this morning, but once AGAIN, God was faithful and brought me to "the other side." Am sore and worn out from the procedure and still facing all my symptoms, but now I have a new tube in for better or worse. Not sure what I am going to do from here but just taking it one moment at a time. Can't fly out tomorrow but sometime soon. So grateful for each of you and amazed at His mercies today in the midst of it all.
June 3, 2013
Hi friends, had an unexpected issue with my g tube this morning and am headed to the hospital for a procedure to have it replaced. So grateful for prayers as this is all quite unexpected and difficult to press through. Thank you!
Subscribe to:
Posts (Atom)