Next steps. Not fun but carry your faith.

I found out what my next steps are. I am left with a weird feeling, I prayed so hard to get the ball rolling but now that it is, everything now feels too real, I don’t know, it’s weird. I was able to finally communicate with my hematologist and she scheduled me for a ton of blood work and a bone marrow biopsy like my heart doctor wanted. It is scheduled for Wednesday afternoon. After that I have to see an allergy doctor or auto immune doctor, they weren’t sure which yet.  I spoke with someone on fb that has MCAS and she sees a doctor at SLU who actually knows what he is doing that I will most likely see him for treatment after these tests are completed to manage it. I just need prayers for peace, comfort, and faith to walk down another path I didn't see coming. I didn't see it coming but God did and I am called to take my faith and just keep walking and fighting so that is what I will try to do.

**If slightly graphic details bother you run away now**

I am used to needles and surgeries/procedures but I have to admit I am so nervous about this bone marrow test on Wednesday. This test is done where you lay on your stomach then they numb through the layers of skin and muscle all the way down to your hip bone. They need to extract the cells that are in the middle of the bone to test them. They make a small incision and insert this odd contraption down until it hits the top of your hip bone and no easy way to say it, they drill through your hip bone until they are in the middle space that contains cells and then they suck a couple of syringes of them out of the middle of that hip bone, remove the needle, and it’s done.

Here is the thing. You are awake. They do give morphine and Ativan to try to help the pain that they say really helps people but I have this issue where my body doesn’t always respond to medications so that Ativan and morphine combo only works like half of the time with me but please pray hard with me that this will be one of the times the medications DO WORK because this is notorious for being a painful procedure as I am confident you can see why. This is a non graphic visual for you that may help with comprehension.

Test results got a little crazy!

DISCLAIMER EDIT TO CLARIFY: I DO STILL HAVE POTS BUT NOW I HAVE IT IN ADDITION TO THIS.



Well, I got my test results and saw my doctor for a review the other day. I have been struggling with some weird symptoms that do not go with POTS and it was kind of a mystery for awhile. I have been given the blessing of a great doctor, when I saw Him today he said that when I started telling him about my new symptoms he caught on that it's not POTS and after some research he thought he found the cause thus these tests I have been speaking of for awhile now.

I am tired of all of this and easily defeated these days and when the test results came back mostly normal, I thought I was going to be thrust back into no diagnosis= no help land and it was a pretty lost feeling that I have felt countless times. Trusting God's plan for my life is so hard because I just don't understand it. It's pitiful because I cannot count the times he has swooped in and saved me. He is so faithful and I loose sight of that in the chaos that my life is but once again in this situation He proved that faithfulness for the billionth time. He is with me even when I don't trust Him because He promises it to me. It's still hard but He provides hope in the hard. I am trying to cling so hard to it. It's all I have.

When I spoke with the doctor today he said that even though my tests were mostly normal and do not show the disease it is because it is so hard to catch as you may remember me saying in previous posts but he is completely confident I have it and I got my "official "clinical" based diagnosis of mast cell activation syndrome.. (MCAS) It's not a good diagnosis but to be honest I felt so relieved and happy to hear that I have it because my suffering was validated. I have known I didn't just have POTS for so  long but nobody would listen to me. Thank you Jesus! (Note to self: JUST TRUST He has already worked this out just like EVERY OTHER TIME). . Once again, instead of worrying for days over everything just put my life  in the hands of God where it should be. I can't change this but I know who can.

What we do now with this diagnosis is so unknown and a bit scary but I have fought to get this far with Jesus by my side, I can fight again. It is such a hard diagnosis to explain but basically when you have an allergic reaction your body releases these things called Mast Cells to fight the allergen but in my case there isn't really an allergen they just release at random and then bind together and build up and wreak havoc. They can build up anywhere.

Here is the thing: he has a suspicion that these cells are congregating inside of my bone marrow. He said it works like cancer and will slowly destroy these cells in my marrow. He referred me to my hematologist because I need a bone marrow biopsy to test for that. If they don't show up there then they are somewhere else and I would probably be sent to an allergist or an autoimmune specialist depending on what the hematologist decides. If they do find it in my marrow then  things get bad and it would mean chemotherapy and all that really scary stuff nobody wants to hear.

In the meantime we are starting 3 medications to hopefully calm it down until next steps are able to happen. I did call my hematologist and of course in my typical fashion she is not exactly comfortable dealing with this but is convinced that Wash U has to have a mast cell specialist so she is going to try to track some stuff down and then she will get back to me on a game plan.

Phew, now in regards to my port that I had tested yesterday they didn't find much but the doctor said that he thinks what is happening is that the line is just a little too long and when I pull back for blood it is basically sucking a small portion of the vessel wall into the tip of the line therefore I can't pull anything back. However I can put stuff in because when I push it in it  pushes that wall away and works. The only solution is to replace it BUT because of my unknown vascular disorder we literally have only one vessel that has not collapsed and that is the current line and it will be a very complex surgery at big barnes, they would put me under general anesthesia and what they would try to do is put an entirely different type of line in. It is called a Hickman line and is so much easier to manage especially with my issues. This also though has a high risk of failing because they would have to slide it down the current path and there is a good chance that vessel won't hold up to being messed with and it too will collapse and then I have nothing. I asked him what happens then and he changed the subject and danced around the question with no straight answer and I believe that is because there isn't one. Given all that we are not touching the current one unless it stops flushing anything in. He said he didn't think it would work but he said it was worth a try to put clot busting medications in it.

THERE IS A PRAISE IN HERE BECAUSE THE CLOT BUSTER WORKED AND THE PORT IS FUNCTIONING PERFECTLY FOR NOW. IT WAS TRULY THE BIGGEST MIRACLE THAT I WAS NOT EXPECTING BUT ONCE AGAIN I DON'T GIVE GOD ENOUGH CREDIT BECAUSE HE IS THE GOD OF THE IMPOSSIBLE. HE REMINDED ME AND GAVE ME ANOTHER LESSON IN TRUST AND I AM  CERTAIN IT WON'T BE THE LAST TIME HIS MERCY AND GRACE WILL POP THROUGH IN THESE MOMENTS THAT TRY TO BREAK ME.

LIFE IS HARD BUT GOD IS GOOD. 

Jeremiah 29:11 For I know the plans I have for you,” declares the Lord, “plans to prosper you and not to harm you, plans to give you hope and a future.

Please pray for me on this journey, it's tough and defeating and I am weary. Thankful but weary.