blood disorder

I went and saw a hematologist are Barnes yesterday and it went quite well. She seemed amazingly smart and was very compassionate and eager to help figure things out. She said that my veins could have clot pieces that disturb the blood flow, we don’t know yet. She is going to review it with there interventional radiologists because unlike the ones I have dealth with , they have radiologists that specializes in the venous system vs the other ones do a bit of everything.

She looked at the pictures of how my body turns red and swollen in places, usually I can feel it in my face. She said my left calve is bigger than the right and all this could be from a blood disorder as well. I had blood work done and sent on my way until she calls me after the review, with her conclusion.

I woke up this morning to a message that my “clot factors” are  critically high. It should be no higher than 230 and mine is 724. The higher the number, the thicker the blood. The lab called it in and she said it is signs of a blood disorder because I am on high dose blood thinners and it is still THAT high. Basically, I have a disorder but they don’t know what yet and she will get back to me.

So, that’s that.

Carrollton - Rebuilder (Lyric Video), 2017

Rebuilding. restoring. sheltering. I have not written in awhile which is usually a no news is good news situation. My "clinical trial" medication has improved my life quite a bit for once! God has restored things that I thought were hopeless pits. Goes to show God can't be put in a box, with limitations. I am so amazed at how He does things, it's mysterious ways that I will never comprehend but I can confidently say that joy can come through pain, second chances are given out like candy, and He never breaks a promise. 

Rebuilder
My walls were crumbling
Restorer
You brought the light into the room
And filled my lungs
So I could learn to breathe
My shelter
My warmth in the coldest night
My helper
You held me up till I could stand
On the promise that You are
Rebuilding me, oh you promise
that you are rebuilding me- carrollton

 I am being schooled in trust with reality checks. I was reminded today that my disease is far from gone and I have pushed myself way too much in the last couple of weeks, pretending I was healthy and pushing my limits.It has resulted in a crash and burn day in which my body has been attacking itself for hours now and nothing I do is helping. Hives are spreading and my face feels like it's on fire but I have felt overall better for a couple of weeks and if it ends now I was still given a blessing. Life is hard but God is good. I don't know what direction God is going with all of this but for today, for right now, I am thankful.

post treatment update

I know people want to know how I am doing since the ketamine infusions and I have hesitated to say anything because I just haven’t had words.

During the 2 weeks of treatment God moved mountains and did so many miracles.  I had perfect blood pressures and scattered full days pain free. He made his presence well known along the way providing me rides, finances and a doctor who cares more than any other doctor I have ever seen in my  life. This doctor went as far as giving me a free treatment and uttering the words “this only puts me out like $500 and I want to see you get better” He was so patient and understanding when the panic side affects of the medication hit once I told him I needed help. I went through a couple treatments where I considered giving up because of the 2 hour long panic attacks that I did my best to hide. He was puzzled as to why I didn’t say anything but when I said it was because I didn’t want him to give up on me because That’s what happens when I have an issue with anything out of the “normal” …I have been given up on a lot.

He sat down in the room with me and promised he will not give up on me. Ever. And stayed with me for 2 hours and talked. This is when he learned that I have a weird tolerance issue to medications, even Strong anxiety medications did absolutely nothing.. We were tripling the ketamine doses left and right because I instantly would become tolerant to the dose we were using so we had to up it each time. If the dose was too low I would panic. While sitting with me he looked over and told me with the high dose I should be practically sleeping not watching Netflix and talking with him about it, he was surprised but except for that it didn’t seem to phase him. He didn’t call me a liar, a drug seeker or tell me he can’t and won’t try to keep treating me. That’s an epic miracle right there.

Suddenly, on the second to last treatment my nervous system crashed again leaving me severely dehydrated. He explained that there is a chance that I won’t be able to come off of the IV fluids because a urine sample revealed to him that it is not even possible for me to “just drink more” and have it be effective because I would have to drink a ton of salt water, regular water won’t cut it. My symptoms are slowly  returning. High heart rate and majorly low blood pressure started up but my headaches have and still are better which was the whole original point of the treatment. It wasn’t meant to fix my nervous system, God just graciously gave me a much-needed break.

 I would call the treatment a success but there is no data on what is likely to happen now that I am done. Nobody knows why it came back which I won’t lie, It was discouraging after 2 good weeks. I have a range of emotions going on right now but I am doing my best to let God lead and don’t let discouragement take over for The miracles that just happened. God works in mysterious ways that I can’t comprehend! The plan now is that the doctor will be going to a convention next week on ketamine and is presenting my case, he will then talk to my neurologist and come up with some sort of a plan and call me in a few weeks.

“All we have to do is follow Him, our feet stepping where His feet have already made a path. The hard work has been done. We don’t have to blaze a trail; we just have to put our feet exactly where our father leads us.”—Laura Story

End of treatment plan

I have been a slacker on updating people with my treatment path. Sorry about that. I am going to recap here and then explain what is happening going forward.

The basics of how ketamine works is kind of odd but the desire is to get me into a dissociative state, it is not a pain medication so I don’t feel “high” from them but when they reach that state it literally is like my thoughts and mind are separated from my physical body for 2 hours. IF the correct dose is given the feeling doesn’t bother me one bit but if it is not high enough I will completely flip out so bad that IV anxiety medications do nothing.

 This doctor is hands down the best doctor I have ever seen in my life. We paid for 6 infusions but he said he wants to see me feel better so he gave me a free treatment! Not only that but the usual patients he sees are psych patients and the protocol for them is like 1 infusion every couple of weeks or something along those lines but the pain protocol is back to back treatments so he leaves his other full time job to come to the clinic JUST for me!! We started out slow with dosing and increased it with each infusion. The doctor is quickly learning that I do not metabolize medications right AT ALL. I had the freak outs during every other infusion and he said he has never seen this before but I become instantly tolerant to the dose we are using and that it why the freak outs happen every other time. He has had to at least double and triple my dose every time or I will not reach the  desired dissociative state.

With my last treatment he was amazed that at a high dose I was holding a conversation with him and watching Netflix when I should be practically sleeping. Needless to say I am giving him a run for his money on getting over these hurdles and finding the right doses which is very tricky but he promised he won’t give up on me and I believe him.

On to results! God is amazing. My pain levels are not getting as high and it is taking less medications to get them to a tolerable level, I even had a day pain free! I forgot what that feels like. Even more incredible is that my blood pressures are improving more and more each time. I knew going into this that this is not a miracle cure all treatment and even though these results are promising I am basically a clinical trial, nobody has a clue what my body is and will do so we are winging it! Given my improvements on the pots/dysautonomia front the doctor said if we can afford another round of 6 that we should do it because we don’t want to quit now and risk loosing the chance for me to improve more.

There is no data to be had for my situation so we are just rolling with it. We don’t know how long these affects will work for me because again, no data. That makes going forward and spending so much money on it when I could go right back to my old self and loose all the progress that was made, that could happen but so could me being better for years to come, we just don’t know.

 I can not put into words how thankful I am for my Chatham family and their willingness to drive me places and wait for hours and for the prayers from my church support team you all have blessed me and I don't know how we would have pulled this off without you so, thank you.

The decision to move forward has been made to buy 6 more infusions with me chipping in on the payments with my social security money. Lastly, I have a few specific prayer requests.

1.     I am trying to qualify for medicare to pay my part B premiums based on my lack of income, because if I get approved it would give me almost $200 more a month that I could put towards the treatments, dealing with medicare will make you loose your marbles at times. (always) so pray for my dealings with them.  I WANT TO MAKE IT VERY CLEAR THAT I AM NOT SHARING THIS IN SEARCH OF FREE HAND OUTS BUT FOR PRAYER.

2.     Wisdom for the doctor to get the doses and strengths at good levels and wisdom for me and my family as we make decisions. My first treatment is tomorrow.

3.     That the Lord will provide transportation (the schedule will be at the end of my apparent novel)

4.     That I will tolerate the DRAMATIC increase in the doses and for no more 2-hour panic sessions.

5.     That I have a thankful heart for His obvious hand in this providing me peace and endurance even through the panic attack days that make me want to give up.

• PARTIAL SCHEDULE--I do not have  times yet, but I have the dates
• Monday 9-10-18
• Wednesday 9-12-18
• Saturday 9-15-18
• Monday 9-17-18
• Wednesday 9-19-18

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. 

dysautonomia: the double life

Part of why it is so hard to find doctors that treat this and why the different "symptom management ethics" vary so much between doctors is partly because of how unpredictable this syndrome is. They just don't seem to grasp that. I live in the world of 2 realities that can change at any second but they are both STILL THERE.

As many of you know I have some port issues going on in my life right now and the plan is unknown at this time. My doctor is starting to question my need for IV fluids a bit but my nurses (thank you Jesus) are sticking up for me.

The reality is sometimes my blood pressure is normal or even high. That is random and not usually the case but I swear the doctors think that I don't need hydration therapies if my blood pressure is stable because they focus on the good numbers AT THAT EXACT MOMENT and disregard everything else including other symptoms.. I have most of the symptoms on this chart.

Yes, my blood pressure can be normal but often even if it is I still can feel blood draining from my head and feel like I am going to pass out. Also my blood pressure is not my only symptom. I have a variety and overall hydration therapy has worked on treating me as a whole better than any medication ever did and does. I do have tolerable days and that is great but in no way does that mean I am better or cured or no longer need treatment which the medical world has a hard time with and doctors who have not been with me from the beginning seem to think I am really not that bad.

My good life and my bad life can change back and forth in the blink of an eye. Sometimes I look like this:

My condition could change so rapidly that 5 minutes later my life becomes this:

Due to living two lives basically I am emotionally fragile and as weird as it sounds if my blood pressure is normal I cringe because I have a fear of everything being taken away from me just because they caught me at an ok time. Right now I am emotionally fragile because I don't know what my doctor is going to do but I will always have a fear in the back of my head that they will not believe me and declare my treatments unnecessary. It consumes me. Anxiety and depression just slither there way in and I loose my marbles. The best thing about God is He can pick up those marbles and put them in perfect order. He is a God who gives and a God who takes away. The take away part is so very hard and scary to try to wrap your head around but I KNOW He doing things for the good of others through this and probably my suborn self as well.

That is the gist of it. on Friday I go back in for more clot busting medications and if that fails well, I just don't know but it's scary and with each blow comes a desire to give up. I won't it is just so hard to live this day in and day and at least for me the emotional aspect to my life journey is so much harder than the physical. I am hanging on but with fear attached. The struggle is real and needs prayers. I am thankful for such a great support system and a God who loves all of my broken pieces and will one day restore them. That is a promise I cling t at times like right about now when everything feels like it is falling apart.