new treatment path

I wanted to share with you and ask for prayers and wisdom about a whole new treatment path I am looking into. There is another girl with POTS at my doctors office that mentioned this to me because it has helped her so much. There is a growing body of evidence that indicates that ketamine used at a sub-anesthetic dose, a much smaller dose than that used in general anesthesia, is highly effective in alleviating treatment-resistant depression, suicidal thoughts, bipolar depression, anxiety, OCD, PTSD, and chronic pain. This use of ketamine is an “off-label” use meaning the insurance will not pay. This would be all self-pay.

So, I submitted my information to the clinic yesterday and got a response from one of the doctors saying they are interested in meeting with me in the form of a consult but I had to submit record releases for all of my doctors and fill out other health forms which I submitted today. Once my documents are reviewed by the team, they will contact me to inform me if I am accepted into the program or not. If I am I then set up an initial consultation with Dr. Foroughi.  This in-office visit will be approximately 1.5 to 2 hours.

If approved it will be 6 infusions over 3 weeks lasting about 40-60 minutes each. What it will do is cause me disassociation often described as a daydreaming, spacey, or floating experience for the duration of the infusion. I don’t fully comprehend how it works for chronic pain but the studies have shown that not only will migraines be less frequent quickly but it also has shown to help the symptoms of people with POTS/DYSAUTONOMIA with the effects of the treatment to the brain.

Pray for my family and I as we begin this path and that God will give wisdom to all involved as we explore this option.

Long waited update!!

I
t has taken me so long to update people because unlike my normal self I just haven't known what to say. I still don't really so this could jump all over the place, you have been warned. I have been in a constant state of waiting for the next ball to drop which drops frequently and without warning and I break a little more with each one. .As you may or may not know I hade a port exchange surgery about 7-8 months ago where I found out that my vascular anatomy is a progressing war zone. My big veins leading to my heart and brain are almost all completely blocked by who knows what forcing my smaller veins to have to try to compensate for the big ones. The other mystery is why the veins in general are straight up collapsing. Due to the collapse we were unable to do the procedure we intended but we tried to go for the picc line and the could not get the wire past my armpit because the veins disappear but they sent me home with it thinking that very slowly they would open again. pffffft rightttt. I spent hours then in the ER dealing with that failure. I then went into my doctors office twice to receive a special medication to unblock it which actually worked for a little while. Now it is going bad again so when I went in for them to try to fix it the internal war zone is progressing to the point where my right side internal is collapsed. Given that information the doctor said he is going to try something new, he removed the existing port and put in another one using the exact same pathway and then he went into my leg to reach up and straighten the bottom of the new port. If this port goes bad I have 100% no way of fixing or replacing it due to the collapsing. This is it. During the procedure they said that it is very abnormal to have veins that look like this and that I need to go see my hematologist ASAP because I am high risk for heart attacks, pulmonary embolisms, and aneurysms. THERE SHOULD NOT BE ANY CLOTS SINCE I HAVE BEEN ON HIGH DOSE BLOOD THINNER INJECTIONS. Later I got a call from my heart doctor saying that they aren't sure if anything can be done at all and the damage that has been done is irreversible and my only shot at this I have is to go see the hematologist (I think they pawned it on him because they didn't know who to send me to. This issue has nothing to do with him so we were both frustrated that they keep pawning me off on him) and start seeking for an underlying disease that is causing this. Even if they find one the majority of them don't have treatments but it's worth looking into. On Friday I saw my hematologist with frustration and he really didn't know what to think. He pondered and isn't AS concerned as the radiologist about heart attacks and all the stuff I said above but it can't be ruled out. He decided that I should see a friend of his who is a hematologist at barnes who LOVES puzzles and that the only way to get an appointment with him is if my doctor called him and explained the situation because again not exactly his specialty but my doctor wants to pick his brain. I am now waiting for a call from his office and I am praying I can be seen soon because it can take months to get appointments for anything at barnes. My doctor also mentioned that sometimes vascular surgeons can go in and re-route the veins but we are going to hold off on that until I see this other guy. So that's that but one of my biggest fears is coming true and I need all the prayers I can get. I am now having port issues again and I am in a state of constant panic because I know this is it for me if issues continue. I have had one ball dropping after another and although I have a smile on my face I am struggling to stay afloat. I will be vulnerable right now in saying I am scared. Scared of the known and the known and I don't feel like I have it in me to go through this new path, that is probably going to be a long one. I'm defeated. Without Jesus that is where this post would end but God's story in my life isn't done yet, I don't understand what's happening but God does and that's enough. He gives us promises to find Him and find hope, peace, love, and faith.

Proverbs 3:5-6

Trust in the Lord with all your heart
    and lean not on your own understanding;
in all your ways submit to him,
    and he will direct your paths.

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.