Wednesday, June 24, 2015

Pulling At Heart Strings - Health Update

While I did received some bad news this week, so many wonderful things have been happening in my world! ...Wow lets just take a moment to appreciate that. Those are not words I get to type very often! While my health may still be struggling, as it always will be, I finally feel I am on a solid treatment plan that gives me enough energy to at least enjoy a few small victories! My weekly iron infusions have made a huge impact on my overall energy levels and improved my quality of life immensely! Plus I no longer have the coloring of a zombie! lol It feel so good to have iron pumping through me veins again! 
I had another dosing of the chemotherapy Rituxan (Rituximab) which suppresses my B-Cells and essentially obliterates my immune system. This drug is helping to suppress my disease and I FINALLY feel like it is working! With this new more frequent dosing I can almost see and feel the differences in my skin, breathing ability, and organ function! I have been able to start drinking things again which is amazingly satisfying and I believe it is a side product of the drug. I am hoping to work up to small amounts of puree items but that will only come in time if my body is willing. Disease is a tricky and conniving little demon... it may decide that liquid is off limits again at any moment, but lets hope not! I feel my ability to breath has improved slightly too; my doc said my lungs do sound a little less stressed! Woohoo! 

I kinda feel like I live at the infusion center currently; I have made some pretty good friends with the nurses after seeing them every five days! One of the nurses that watched my Port access last time got to use me as her first ever Port access patient! She did so well and got a perfect access!


I had an appointment with my Rheumatologist who was very satisfied with my progress! Between the new drugs, more rigorous treatment plan, and use of oxygen I seem to be really holding my own. One thing I want to clarify for my readers is that my lungs currently are fine-ish. The reason I am on supplemental oxygen is due to the poor function of my respiratory muscles. The respiratory muscles that are responsible for expanding the lungs do not work adequately leaving my under oxygenated with activity such as walking or talking for long periods of time. My actually lungs do not currently have mass amounts of fibrosis, I actually have basically none; it's my muscles that are causing the dip in my oxygen levels requiring the use of supplemental oxygen. You will not see me on oxygen 24/7 but will see me on it when I am walking out and about, at the mall, or out for a long day with family. If I am engaged in an activity where my body will be at rest for a long period of time such as watching a movie,  driving, or sitting on the couch, I will more than likely have fine oxygen levels and not require its use, however sometimes I might. My body knows when I need it and when I don't.

I also had an appoiment with my Gastroenterologist this week. Since my body has decided that SIBO (small bacterial intestinal overgrowth) is my new normal I am officially set to be on antibiotics the rest of my life. While this is not optimal, it is the only way to combat SIBO, and is much better than the alternative -- diarrheaing out all your nutrition and iron, which requires hospitalizations every other week. I will be on a alternating daily schedule of heavy antibiotics: one day on, one day off to tackle this overgrowth and hopefully settle my bowls. This issue is what is causing my serve anemia as my bowls can no longer absorb iron. We are hoping that by counteracting the SIBO with antibiotics on this heavy regiment that my iron will level out so I can discontinue my infusions every five days. As of now we will be stopping the iron infusions until we know if the antibiotics are working; if I still in 6 weeks can't keep up my iron levels we will be starting frequent infusions again. Since all of this seems to be spiraling out of control lately my doctor ordered a "Smart Pill" test that will track my digestive system transit time. I basically just get to swallow a giant pill (which may actually have to be placed through an endoscopy since my esophagus doesn't work) which will decipher where my intestines have slowed/stopped so we can find the right medication to stimulate that particular area of the tract.

Lastly I had an appointment with a Cardiologist to follow up with some palpitations I've been having, and a small murmur that has recently shown up in clinic. This new cardio went over my history, and old Holter Monitors results that track the rythem and beats of the heart; what he found was quite surprising. All of my monitors over the past year have showed multiple episodes of SuperVentricular Tachycardia (SVT.) This can be a serious arrhythmia due to improper electrical activity in the heart causing a plethora of problems including fainting, dizziness, lowered blood pressure, chest pain, and a decrease in cardiac output. The doctor was pretty peeved that these test results were not read properly, and that I was not informed of this issue; SVT clearly correlates with all my symptoms. Luckily, this is an easy problem to fix with a medical procedure called an Ablation. An ablation is preformed by placing a long thin catheter through a blood vessel in your groin into your heart where a piece of the tissue is modified using Radio Frequency, essentially re-wiring the heart to stop beating incorrectly. While this sounds very big and scary, it is supposedly a simple procedure that has very high success rates! He told me that I will feel much better once my heart is re-wired to beat properly! We haven't scheduled this procedure yet, as we want to do a few more tests before we move to this somewhat drastic measure. For now I will re-preform a Holter Monitor for 24 hours, and follow up with him to address the results in two weeks.
As a interesting side note, he expressed to me that my small murmur is due to a "heart string." My  Left Ventricle has a small chord running across it that causes innocent murmurs; apparently it's completely benign and is an abnormality formed at birth.

A very BIG thank you to all the supporters who came out for the Scleroderma 5k last weekend! I cannot begin to tell you how much it meant to me to have so many people walking by my side! Our team had the largest number of members; 35 strong! I am still so blown away by the love I have received from our small community! I walked almost the whole 5k, but alas, my poor body couldn't make it all the way. Thankful my husband Noel made it up for me! ;) Running a 10k in my honor! I love that man so much!


In some other rather exciting news I have been asked to be a speaker at this years Scleroderma National Foundations Patient Education Conference! I will be one of three patients on a panel talking to others about "Living Well with Scleroderma"! I am so excited for this opportunity and beyond flattered that the Foundation thought to ask me of all people! Now I am even MORE excited to attend next month! I would love to meet all of my readers at the conference if you will be attending! Look for my panel in the schedule on Sunday in the Belmont Workshop Room from 11-12pm!

25 comments:

  1. I had an ablation performed a couple of years ago - a little scary to think about, yes; recovery time, minimal. Had I known it would be so easy to solve the racing heart beats, I would have chosen to do it long before. If you doctors feel you are doing well enough to have it done, go for it. The results are worth it!
    Keep the faith!

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  2. Barry had that done, too and after years of the medication NOT working, the ablation did the trick.
    Hope that helps ease the stress of the procedure! Love and Kisses,
    the Nelsons

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  3. My dearest Chanel White,
    Hi!
    It’s matter of great surprise to see you smile in the toughest time because you are one of those strong-willed people who smile in the toughest time of their life. I strongly believe that everything is possible in this world because impossible itself says that I’m possible. I can foresee clearly that after reading my response, my pieces of advice fully worked for you and you are fine like the woman having the soundest health and perfect body and like the person who has never suffered from anything. 
    I am mentioning 8 methods among which I have personally tried and tested 7. Surprisingly, these seven methods have fully worked for me to an inexplicable degree.

    VIII best method: Praanaayaam
    Practise Praanaayaam. In layman’s language, it’s just a set of breathing exercises. (But, in reality, it’s much beyond human’s thought.) Better consult Swami Ramdev in Patanjali Yogpeeth, Haridwar. Be advised. Before you begin to practise the basic breathing exercises even at a very slow pace, do consult your doctor well in advance to know if it can cause any side effects to the ongoing treatment.

    VII best method: Vaastu
    Triple cross-check if the house you reside in is accordance to Vaastu. In layman’s language, Vaastu is a divine science that teaches one how to build or keep something to have a positive and fruitful impact on her/his life. For example, whenever there is a toilet at the south-west, centre and/or north-east corner of the house, it symbolizes the prolonged illness of the family member(s) which can eventually lead to death in extreme cases.

    VI best method: Numerology
    If Chanel White is your full name in active documents like your passport, driving liscense, etc., (P.S.: Passive documents are your academic transcripts or anything which is no longer in use or will never be used.) test if the spelling of your name is strictly in accordance to Chaldean Numerology. If not, get it changed immediately to a lucky coumound number which is in sync with your lucky number. According to Chaldean Numerology, your name adds to 43 which seems to be a very bad compound number.

    V best method: Laws of Attraction
    I believe you already know about it. Practise it and reap the unexpectedly awesome benefits.

    IV best method: Reiki
    Reiki is a kind of meditation and strong healing technique WITH NO SIDE EFFECTS (this is where Newton’s third law fails). Reiki took its birth in Japan. Its founder was Mikao Usui. Now, William Lee Rand is still there and you can consult him or one of his initiated MASTER disciples in any corner of the world (sadly there are many evil in disguise too) who can teach you and/or one/all of your family members to practise Reiki. Even if you or any of your family member learns Reiki, (s)he can heal you without you doing anything (at least you should be awake and ready to accept the divine energy). When a person learns Reiki, the MASTER may or may not charge a little amount like USD 250 or USD 300 or more per student (one time payment which varies from country to country). I told you this in advance because this fee should not be a turn off for you. In other case, if you just ask a MASTER Reiki expert to heal you, (s)he may or may not charge you some amount per session of healing. The Reiki Expert’s (at least who is a MASTER level expert) energy is awesome. If you get the healing session from such experts, your recovery will be extremely rapid and you WILL begin to experience it very soon. But, I strongly recommend you and your family members to learn it because many of your family members can heal you simultaneously and frequently even from a distance.

    P.S.: I’ve not mentioned my personal experiences when and how I benefitted from these methods because even without mentioning it, my message to you has become too long.

    Many days have passed. You have been fully cured of what you are suffering from. Fully means 10000% or more. Now, my only question for you. The Lord neither wants your money not your wealth. What could you do for the Lord in this life that He gifted you? :) :)

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    1. Yes!!! By all means check which direction your toilet faces. Lmao, and then rush to the courthouse to change the name on your birth certificate. After that head on over to the DMV to get a new drivers license. No biggie.... just double check ahead of time to make sure you new name doesn't add up to be a number that's even WORSE than 43. Let us know then, how quickly you are recovering !!!!

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  4. I read your story and I am really sad. Don't give up and be strong. I can understand your pain by reading your stories. I wishing you a miracle from god and that will take back you to your life. All the best :(

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  5. Connective tissue is predominantly powered by Immune system. Inflammation - minute could be maintenance of excess development. Why shouldn't we need to address correction of immune system?

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  6. Better consult Swami Ramdev in Patanjali Yogpeeth, Haridwar

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  7. Tenha muita fé,estou torcendo por vc,beijos

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  8. Tenha muita fé em Deus.Nada é impossível para o Pai Eterno quando temos fé.Não se entregue,mas confie plenamente.Busque Deus seja forte

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  9. Tenha fé em Deus.Você vai ficar curada.Busque Deus de todo o coração.Nada é impossível para Deus.
    Sou do Brasil

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  10. Minha filha teve esclerodermia aos 13 anos, hoje ela esta com 33 anos e esta curada, tratou-se com uma reumatologista aqui no Brasil, o tratamento durou 4 anos.

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    1. I would love to hear about the treatment she received! I am so glad she is doing so well!

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  11. voce nao disse que assiste muita televisão, entao te peço que assista este programa http://www.impd.org.br/tv/
    depois voce me conta ok!?

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  12. Tenha fé em Deus que você ficará curada!! você é forte e muito valente... muito linda a sua atitude de querer mostrar para as outras pessoas que as pequenas coisas devem ser apreciadas, admiradas e vividas intensamente, pois como você falou "a vida pode acabar num piscar de olhos" e viver preocupado, de mal humor, sempre apressado, faz nós passar despercebidos por essas pequenas coisas ... muita energia positiva para você, bjs

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  13. Vc é linda,simpática tem um sorriso muito lindo.Tenho certeza que vc conseguirá superar esta doença.Vc merece.
    Silvana - Brasil

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  14. Warrior of Christ. Her husband is also a real man christ , example. Never give up because you are a living incentive for millions of people . Playing generations with this wonderful testimony that only one chosen of God can go and still see the wonders in small things.

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  15. You're a warrior. Keep fighting and not give up ever . Go frente.Deus to give you strength to continue facing the difficulties it has faced and face . He is with you . Will never abandon it. His goodness and mercy shall come to accompany her all the days of your life.

    When you are feeling alone, sad and discouraged , remember that there is someone who loves you and who is always at his side. Talk to him. put your problem on his hands and relieves her in so much pain . I'll be praying for you. we are together.

    Psalm 23
    1The Lord is my shepherd; I shall not want.

    2 He maketh me to lie down in green pastures: he leadeth me beside the still waters.

    3 He restoreth my soul: he leadeth me in the paths of righteousness for his name's sake.

    4 Yea, though I walk through the valley of the shadow of death, I will fear no evil: for thou art with me; thy rod and thy staff they comfort me.

    5 Thou preparest a table before me in the presence of mine enemies: thou anointest my head with oil; my cup runneth over.

    6 Surely goodness and mercy shall follow me all the days of my life: and I will dwell in the house of the Lord for ever.

    hug
    Paulo Victor

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  16. Dear Chanel, I am sorry you are facing all this. Recently we faced a similar matter with my father. Some time ago he was diagnosed with syndrome of multiplys systems and we supported him every single day as better as we could. I´m 32 years old and I´ve learned so many things during this process that I became a new person. Depends on how you face the situation, you may become a better or worst human being, but never the same. After all this I can see that we certainly do not belong to here. It is just a small path, a short time that was given to us to enjoy the creation and help those who need. Life is just an opportunity to increase the brightness of our soul. That is because we are not a body with a soul; We are a Soul with a body. And the soul is immortal. Surely these words do not take away our suffering but I hope that reflection can clear your thinking and warm your heart in the same way it does to me. God bless you and your family. Regards from Brazil, Ricardo (ricardo.mendes@yahoo.com.br)

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  17. I feel privileged to know me his story, I am Brazilian I live in Rio de Janeiro and its words have life and discover that being healthy is a privilege that we often ignore ... May God bless you, give you strength, courage, and that every day you win the battle and to wake up, be a day of victory, that all evil or sad phrases can dissipate from your heart and become just poeira.Saiba that even not knowing or you being her friend of childhood you changed my way of seeing things, are not just words of encouragement or something tipo.Sinceramente see that everything we think is so important in fact insignificante.Que you continue firm and standing and that even with all the pain and remedies you continue to walk, do not give up that God be with you bless your family and every person has the opportunity to be with you. Thank you very much wish you to be happy a little bit every day if any .. Thanks again Juliana
    Caso você queria conversar ou retribuir este simples comentario meu e-mail é jpinto@cpvv.com.br

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  18. Dear Chanel. I was very excited when I read his story.
    As you know there are millions of people going through suffering. Each somehow different from each other.
    But I say that all this can change when you open your heart to accept Jesus as their Lord and Savior.
    I am Brazilian, married there 21 years, and went through very difficult moments in my life. But today I am strong and struggling every day more flortalecer me to win all baltalhas that appear in my ways.
    All this power I have today, I got through my acceptance of Jesus as my savior and liberator.
    I would love you also find this Jesus in your life, and I know that he can heal you and release. And you can still live very much with health and joy because Jesus is the power of all things and he has power to heal you.
    Attend here in Brazil an Evangelical Church Call WORLD POWER OF GOD CHURCH, where the Apostle Waldemiro SANTIAGO is the leader .. If you go online and search for WORLD POWER OF GOD CHURCH you will find, there you will get to know the work of this great man who is the Apostle Waldemiro that has helped so many people in their suffering and anguish.
    How many cures have happened in this church, if you could come to Brazil and go seek in the Church and asked the apostle Waldemiro prayers for you I believe Jesus will give you this great victory.
    I know, and I'm sure I did not go on the internet today by chance, was the will of Jesus to help you.
    You can rest assured the victory is yours. Jesus wants to give you this great victory in your life. I hope one day you can send me a message, saying that Jesus healed you.
    I'll wait for that day.
    My hug
    Tania Carvalho

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  19. Oi moça conversei com homem que faz remédio a basa de ervas sobre sua doença e plantas e ele falou que sua doença tem cura se quiser iniciar o tratamento, qui no Brasil você pode ficar na casa da minha sogra ou se preferir dar o endereço da sua casa. ele pode fazer o remédio e nós mandamos para sua residencia e começa a tratar com certeza ficará curada !

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  20. Hi lady talked to the man who does basa herbal remedy for his illness and plants and he said that his disease is curable if you want to start treatment, Chi in Brazil you can stay in the house of my mother or if you prefer to give the address of your home. it can make the remedy and we send to your residence and begins to deal surely will be cured!

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  21. Hello Chanel, I was touched by his story and I remembered reading about one cure for scleroderma Autohemotherapy. The following text of the speech of Dr. Luiz Moura on the subject, and below the full text of the link and Facebook it, if you want to contact. God bless you and your family.

    Heloisa Maynart

    Scleroderma
     10/09/1976 day if internal in the clinic, at that time, I was head of the medical clinic of the Cardoso Fontes Hospital, and had a dermatology consultant Dr. there. Rícia Álvaro Florião works near here at Square Sans Peña as it looks, it then she made a diagnosis with three biopsies, it is a woman who is eight months was not moving, was on a stretcher, paralyzed and goes and is in the hospital. Well, then she makes the diagnosis, take biopsies, Pathology send to the hospital and Dr. Gloria Moraes head of Pathological Anatomy, gives the report:. Scleroderma finals. Then Dr. Rícia decided to take a class. We had every Monday a class of cases that were not routine, cases leaving the routine. And this is a very rare case. Scleroderma is an autoimmune disease and it is not frequent.
     
    Then she gave a wonderful class, I learned a lot from her because I did not know anything about scleroderma, did you read the book, had never seen scleroderma patient, and I was her boss!
     
    And she gave a lecture there, he finished the class when finishing the prognosis tava, when you say what can be done by the patient, Dr. Rícia sent the nurse to take the patient. I get it, now it is the time to say what they have to do for the patient. You had to take the patient to not hear it. She said is true, I have nothing there to make the patient.

    I tell Rícia: "You delivered me to this patient I apply a technique that is not current and is called Autohemotherapy She laughed and said so, she laughed in front of the boss it was me and two other assistants. they were my assistants, and said thus:
     
    - "Dr. Moura, I was medical resident, you know that I arrived in the US in May, I was a medical resident there, a clinic where converged all cases of scleroderma in the US, and the clinic was no longer nothing a deposit of scleroderma, had nothing else to do. So you think you can do? "
    I said: Look, I'm now home to get the two works of Dr. Jesse Teixeira and Dr. Ricardo Veronesi, I'll get these two works, and you will see that the idea is well founded. I went, I took twenty minutes to bring the work. I got there and read these main parts of the two works and asked: And now Rícia?
    "Ahh, has logic, it can work, it is worth."
    And then I did. But I needed, as I was doing a new thing, a hospital, no one had ever done, I then took the .... made a brutal dose. I took 20 cc of blood and applied 5 cc in each in each arm (deltoid) and 5 in each buttock, because I had to produce a result, or worked or did not work, I had to get to ....
     The improvement was an amazing thing. It (the patient) was ... her tissues ... because the person is scleroderma skin as if it were skin alligator, hard, a person dies in a terrible situation because dies in choking, because you can not breathe. The lung can not expand, condition does not expand, is a block of wood, the body.
    I then did, and oddly enough 30 days on 10/10/1976 this patient walked out of the hospital.
     
    http://www.portalbrasil.net/reportagem_hemoterapia_entrevista.htm

    https://www.facebook.com/pages/Dr-Luiz-MouraAuto-Hemoterapia/254910774611393
    I sent email to thetubefedwife@gmail.com and returned.

    My email is hdmnettb@gmail.com Mandei email para o endereço da sua página, mas voltou.

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  22. https://www.facebook.com/perrystonevoe
    kisses for you. Jesus loves you
    Heloisa Maynart

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