To start I want to apologize for the lack of updates lately as I have been very busy! I have many things to cover in this post due to the length of time it has been since I have last updated you all.
1. I will start with the most important and most crucial prayer request. It is believed I may have Nutcracker Syndrome. This is a very rare vascular disease where my aorta and left renal vein connecting to my left kidney are squeezed off. This could be a cause of many of my symptoms. I need to have a CT angiogram of my abdomen and pelvis completed. I was going to have this completed at McLaren Imaging in Flint, but it was such a headache getting this figured out so today I called to cancel my appointment in Flint and will have this completed at Dr. Manohar’s hospital in Grand Rapids. Now waiting for insurance to approve the test once again so I can schedule the test. We hope for a quick appointment date but with the unknown road conditions given the time of year scheduling a date in the future may be difficult. Praying we can get this test done soon. We also pray this test holds answers for me as if the nutcracker syndrome is an issue for me this can be surgically fixed by relocating my kidney amongst other surgeries… sounds daunting but the word FIX is music to my ears! This is not just a possible diagnosis that just sounds like it fits my symptoms either as I realized in my liver surgeon’s notes from Henry Ford that he notes the left renal being is compressed in my scans… but I guess he wasn’t going to tell me, so I had to read my report to discover this comment and act on it. So, due to this finding, we are digging deeper into this diagnosis hoping to confirm it as it would explain a lot of my problems.
2. Easter Sunday we will be heading out to Chicago to the City of Hope (previously known as Cancer Treatment Center of America). I will have labs, an internal medicine doctor, check in with an oncologist, full body PETCT scan, MRI of the abdomen, infusions, and be given full anesthesia again for a colonoscopy and endoscopy looking for those nasty tumors (and my newly developed diverticulosis), GI doctor follow up, and more. This will be another long and exhausting trip, but we are praying so hard that this trip we can find my tumors and take care of them. I know God can and will heal me in His timing and like Job I will continue trusting and leaning on Him through my trials and will be waiting for God to provide me with triumph. When more details regarding this trip arise, I will update you all. Because the trip’s date is coming near, I only have three treatments left before I must stop for my testing in Chicago. The time of no treatments is always hard for me and all the prayers for that time are appreciated!
3. My neurologist increased my migraine infusion dosage that I receive every three months through an IV. Our hope is if I have more medication in my system when it wears off at least I should still have more medication in me than I would not have before the medication increase. When the medication is in my system my migraines are for the most part controlled except for sinus and my Cervical Instability issues.
4. I have endured a few seizures lately, so my doctor increased my Lamictal. I have already seen some improvements so we will pray that this improvement continues!
5. The last couple of weeks getting my IV in has been better but for a long period of time getting my IV was a huge struggle. We are talking up to ten or more pokes three-four days a week. I go in phases in which placing my IV can be a nightmare and my nurses must leave and come back the next day praying for better results than we go for weeks where my IV is placed in just under three pokes per day. My veins are simply exhausted as I have received IVs probably for fiveish years now and some of that time it was seven days a week in the ER and now it is three days (sometimes four days per week sometimes five if the IV fails). All my doctors agree that placing a port, midline, or picc line is simply too dangerous for me given my risk for anaphylaxis, carcinoid crisis, rejection, and infection. I am pneumococcal resistant as well so if I was to develop an infection, the antibiotics I could take is a very narrow list as my body will not respond to many of the medications. So, we pray that my IVs are more corrupt in the future! Only by the grace of God has my veins survived this long given all the lumps of scar tissue and my poor veins from my Ehlers-Danlos Syndrome.
6. My knees have been bothering me lately and I think my right knee has either some arthritis or something else going on in it. My EDS wears my joints so much faster than the average person so staying on top of this pain is crucial to ensure a bigger problem isn’t occurring and we blame it simply on the EDS. My PCP ordered an X-ray of my right knee at Regional Medical Imaging, but I just now must find time to make it down there.
7. My sinuses also have shown concern for a while now as they are always hard, swollen, and painful. They can be so swollen at times you can see the inflammation just looking at me. My PCP also ordered a CT scan at Regional Medical Imaging to see if a bigger issue is going on here as nothing, we are trying seems to help them now.
8. Dr. Mahohar believes my POTS subtype is hypovolemic POTS meaning I have a lack of blood volume therefore on top of the POTS issue when I stand up, I have less blood volume to support the blood flow to my hence the passing out. Knowing this we switched my normal sodium IV to Lactated Ringers. The LRs are filled with more electrolytes like potassium, magnesium, and more.
9. When placing my IVs lately my nurse and I have noticed how extremely dark my blood has been. When we say dark, we mean like my blood has been almost black. The blood has been very thick yet bleeding and bruising super easily. Because of this, we contacted my PCP for an order for a blood test and she sent the script to my nurse. My nurse took my labs at home and took them to the hospital. The electrolytes were off and the main one arising concern was my high potassium. I am usually deficient in potassium so for years I have taken a potassium supplement but when my IV fluids switched to the Lactated ringers and the supplements continued, I think it was simply too much in conjunction. I stopped my oral potassium pills, and we will redraw all my labs tomorrow to see if there are improvements. There is about 0.2% less sodium in the LRs than normal saline IV bags and that small difference has made my sodium level drop below the normal range again as well, so we also are hoping I am starting to maintain this level.
10. My blood pressure is still dropping greatly when standing so Dr. Manohar has placed me on a new medication (new to the market) to help increase my blood pressure… decrease fainting. I only have taken this once because my blood pressure must be very low, and I must be active when taking this. Like my midodrine, I am unable to lay down flat while I am taking these pills.
11. I have been very fatigued lately and not my normal tiredness. Yes, I have a puppy I am training but this exhaustion is not my normal and my nurse completely agrees. I have had two times now where all day I am simply lethargic and unable to wake up. When my mom and grandma try to wake me, I will open my eyes and fall back to sleep. I had one of these days Saturday and had to miss church in person Sunday because I had to sleep in still (still watched live online!). We have no idea why this is happening yet, and I am hoping this does not happen in the future.
If you made it to the end of this post, I greatly appreciate it as I know this is a crazy amount of information hit at you at once. I am so appreciative of you all who pray and support my family and me as we continue fighting for my health. People ask me how I make it through all these hurdles, and my only answer to them is only by God’s guidance, my great family, and friends, and along with your support and prayers! I know when God heals me completely one day the testimony, I will have will be so prevailing and if I must go through these hard times for God’s plan to be fully achieved so be it as the pain is temporary, but souls are eternal. I used to have a hard time praying to God to use me to serve Him no matter the cost because of the fact my health is such a challenge, but I now realize that praying that full-hearted prayer and being His disciple no matter the cost makes a giant challenge more possible than what even a smaller problem would be as I am fighting with the goal of spreading God’s glory through it all. This life’s pain is temporary, and I know if this suffering helps just one soul to join me in Heaven one day all these hardships will have been worth it. Prayers for answers soon and to be as comfortable as possible until God’s ultimate future healing. Love you all very much and thanks again for your prayers and support!