Life Without A Fork

Home » Angioedema Global Medical Crisis Board

Angioedema Global Medical Crisis Board

 

iae-girl_vanessa-williams


Keep Up Doctors, We Are Learning!


The internet can be a patient’s worst enemy as we scrounge the web looking for answers to our many symptoms, related fears and confusion. However, if done properly or should, “luck be the lady,” and we happen to stumble across pertinent, perhaps even life-saving content, this frantic searching can lead to a more informed patient. Sadly, and far too often, this is where the knowledgeable and professional may collide!

Patients are visiting into the ED’s and hospitals with more understanding about their bodies and necessary health care and these doctors need to stop getting angry about what we already know and simply catch up! Their egos are costing lives! Who polices our medical systems? Our doctors?

Additionally, when it comes to angioedema, although there is no concrete testing to be done for people living with the non-hereditary forms of the condition and medication recommendations are often based on the trial-and-error approach, it is time for the medical community to accept that, aside from the generalized tests such as high IGE levels, thyroidal issues, H-Pylori infection, etc., we, as patient know our own bodies—we know if we have angioedema! We swell up–eyes, lips, tongues, throats, genitals, intestines, bowels, limbs, and even the brain! We get hives (some may have had prior issues with urticaria but may now be predominately angioedema sufferers)! We can’t breath (even though our oxygen levels may read as normal)! Swelling can happen below the surface as well and this can be so frustrating to explain to people who work in a field of wonderment but refuse to accept the possibility of it all.

When I was last hospitalized, my white cell count was really high. When I’d researched it–iPhones can still be good for something–while still in the hospital, ‘sources’, were saying it could definitely be stress related, or if you are having a strong adverse reaction to something, such as meds, other health issues, etc., and that you could get it back under control. The thing is, when I’d gotten to the hospital the night before, my blood work had come back normal so when they told me this, I told them to check it again because they were the friggin’ cause! Geez, I can laugh just a teeny bit now but it was stressful, then! I’ve had several, really extensive blood workups done by both my GP and my rheumatologist since then and, other than issues of malnutrition (of course that’s gotta change soon!) my blood work came back normal, as I knew it would!

As a New York State Certified English Teacher, I know that, as in most professional capacities, teachers are regulated to re-certify according to new materials, methodologies and technologies, being continuously introduced to the profession. Is this not the case for medical professionals to maintain their status as MD?! It should be as unacceptable for doctors to not keep abreast about what is happening in the world of medicine, TODAY, and they should be held accountable for unreasonably remaining unawares of new protocols! We’ve got our work cut out for us with trying to get some honor and respect for angioedema and I can only hope that our outreach efforts will impact the right people to help save the many of us who are searching for safety, compassion, and for goodness sakes let’s move back to it, already, the doctors’ need for continuing education, in medicine!

~ Vanessa Williams, Founder


THE ALLIE BARNETT  STORY | 10.11.14

In addition to the her having chronic angioedema Allie has the rare, partnering disability, Mastocytosis. The doctors have informed her that she had a severe reaction to the chemo, Gleevac, a drug for which she had very high hopes as, at this point in time, she has already lost 68% of her lung function. Allie’s bright spirit continues to fight on as she looks forward to being able to tolerate a new chemo drug, made specifically for Mastocytosis, which should be FDA approved and available to patients as early as 2016. We pray that the approval for Xolair and other pertinent medications will sustain her until and beyond that time.

IAMCF_Allie Barnett 02.003


Update on Allie: | 02.25.16 at 11:30am

“This is Allie’s husband Jeremy. She’s very weak and still in a lot of pain so she asked me to post what happened this past 10 days. In short she had a mastocytosis systemic reaction when they intubated her for surgery causing severe hypoxia literally turning her purple, and was on extremely high doses of Epinephrine for 11 hours causing lactic acidosis.. She remained intubated and under sedation for 69 hours in order to complete surgery that was supposed to take 2 1/2 hours. Obviously she didn’t remain in surgery that entire time. Her surgery was scheduled for Wed(Feb 17th) at 12:00 but she went into anaphylaxis immediately. After she was finally stabilized I was given the option to keep her intubated and sedated until they were able to complete the surgery at 2:00 PM Friday. I took it. She came to after being weaned off at 8:45AM Saturday. The severe edema and effects from the hypoxia and Epi have prolonged her recovery but we were able to come home last night at around 5 after 8 long stressful days. She can’t walk very well or on her own due to some tissue damage(caused by the extreme high amounts of epinephrine to keep her alive) and severe nerve pain in her feet which Physical Therapy has been arranged to get her walking again. The details below are from my notes of the past week. I took them because I knew we would need to know as much about what happened as possible to prevent it from happening again in the future. Not to mention she would murder me if I wasn’t able to tell her what happened when she woke up. I don’t blame her one bit, I’m the same way.

We had been admitted to the Surgery ICU on Tuesday the 16th awaiting surgery on the 17th at 12:00PM. We do this in order to make sure all the doctors and nurses know what they’re dealing with so we aren’t a surprise later coming out of surgery. Everything was going fine and we made sure not to run into any triggers. We used reverse isolation rules where everyone coming in gown/mask up and also made certain to use all of her meds from home to keep continuity with dyes and excipients. The hospital pharmacy hates this but that’s too bad for them.

She went into surgery very calm and wasn’t even worried. We knew we were in good hands with our anesthesiologist who we have used 7 times and is even the director of anesthesiology at UC. He knows his stuff and the ins and outs of how to treat her. He also adheres very closely to the known anesthesia meds she can tolerate and never deviates from those to make sure everything always runs smooth.
After going into surgery at noon they began the Propofol and Fentanyl and started an arterial line in her left arm then began to intubate her at about 12:15 on Wed Feb 17th when her lungs and bronchial tubes clamped shut. Thankfully the tube was already placed so they started bagging her and were able to use Albuterol to eventually open her lungs back up and then hook her up to the ventilator.

At the same time she had a prolonged severe systemic reaction and lost blood pressure. It went down into the 30’s over 20’s and became severely hypoxic mixed with the closed lungs. Her anesthesiologist told me her entire body turned dark Plum purple. They had immediately begun an Epinephrine drip at 12mcg/min, large doses of IV BEnadryl, and Solu Medrol but this wasn’t enough to keep her BP stable without extra Epi pushes. They inserted a central line in her neck and began bolus warmed Lactated Ringers solution and Epinephrine pushes when her Mean Arterial Pressure would sink below 60 and/or Arterial BP would drop below 90 systolic. In the beginning this would happen about a minute after an Epi push but gradually tapered off and stabilized around 5 PM once they had titrated up the Epi drip to 25mcg/min.

They had one of our hematologist doctors come out to talk to me at 1:15 and tell me what happened and ask some questions. This was a surprise and I knew something bad happened because they got his name off of our protocol book. He came back 40 minutes later and told me they have things under control and I would be speaking to our anesthesiologist and surgeon soon.

I spoke to them at 2:20 and went over what happened. They had taken her back into the SICU room we checked into the day before and were still working on her. She still wasn’t breathing on her own so she was still on the vent. None of them had ever seen a reaction this swift and severe after following everything identically to what she has tolerated well before. They told me the extent of what happened and especially that if we hadn’t been where we were she would no longer be with us. It took a team of highly trained (about 30 drs and nurses) in the OR to keep her alive and it still wasn’t over.

We then went over the options facing us at that moment. She needed the surgery but may have the same trouble next time she is intubated. That leaves us will three courses of action- leave her intubated and do the surgery when she stabilizes (the anesthesia and intubation mountain is already climbed), wake her up and do the surgery later under just Propofol and Fentanyl without general anesthesia (a lot of risk of her waking up during), or risk it all again under general at a later time (increased chance of this happening all over again plus a decreased chance of survival). I had a lot to think about the next few hours.

I then went back into the SICU room about 2:20 to make sure they didn’t give her any new meds and have all the fluid warmed. Especially the bolus fluids. The room was full with about 9 doctors and nurses working and watching her stats very closely. I stayed in the room answering questions on different meds and working closely with the doctors to make sure we/they didn’t make things worse. They kept titrating up the Epi drip and would add another Epi push whenever the MAP got below 60. This is after they had already given her 3 Liters of bolus LR Fluids (1 in the OR and two in the room). Then they started having trouble with the arterial line. They said probably because of the Epi hardening the arterial wall. They “rewired” the one in her left arm but that only worked for a little while. Eventually took that one out and inserted one in her Femoral artery.

At 3:30 she was breathing on her own and they switched the ventilator to CPAP mode.
At around 5:00PM her pressures were remaining stable with the 25mcg/min Epi drip. This began causing other problems forcing us to look for alternatives. They continued another 2 liters of bolus LR and also added Vasopressin to be able to wean off Epi. Thankfully they started titrating down the Epi and Vaso at around 9:30. This whole time they had begun giving her potassium and sodium bicarbonate to protect the kidneys and counter the acidity levels of her blood. Her acid-base gap had gotten all the way to 16 where they like it to be 2. This can cause severe damage to organs, especially the kidneys and liver.

allie-barnett_2016-0011.jpeg

 

I had them insert an OG tube down her throat and into her stomach at around 9:00 PM to make sure she got her night Masto meds. They didn’t want to at first because we were all afraid it would irritate her throat again but I pretty much made them because if they would have given their IV meds from different manufacturers and with different ingredients we could start this whole thing over again. Since she was already on so much Epi we all decided it was worth the risk to get the extra meds on board to help.

Eventually they titrated the Epi down and she was off it and the Vaso by 3:00AM. Normally they would have done this a lot faster but her BP was still a little unstable. We all took a sigh of relief and settled in making sure she stayed asleep but not too asleep so that her respiration rate was reduced. She was on 30 mcg/kg/min Propofol and 125 mcg/hr fentanyl. This was a problem all in its own because I knew every time she woke up it was causing stress and therefore triggering her more. We kept her that way for the next 2 days. Sometimes she would hear something or feel something and wake up a little but the nurses would push a little extra propofol and fentanyl then she would go back to sleep in seconds.

Later that night and early Thursday morning we noticed her right foot changing color. They watched the circulation in this foot very closely over the next 5 days. By Thursday night it was cold and a dark bruise had developed over almost her entire big toe. This was caused by the Epi closng off those smaller vessels which were already clamped down because of the masto reaction to the Femoral line in that leg. We had been through a minor problem like this when she had her renal angiogram. Whenever Allie gets an IV or even just a blood draw her vessels and arteries in that leg or arm clamp down.

They went ahead with the surgery at 2:00PM Friday without complication and it only took about 2 hours. Her condition was stable but it was the end of the day and they didn’t want to risk taking her off the vent without the right staff on board overnight so we waited until about 9:00AM Saturday. She came off fine but was still feeling the effects long into Sunday from the prolonged sedation. She was extremely swollen still from all the fluids and in too much pain from both the swelling and her right foot to get up. Also her troponin levels were elevated showing tissue damage to organs such as the heart.

Late Monday morning the swelling had gone down enough they made her get up and sit in the chair for an hour and a half. This was extremely painful because of all the lactic acid in her tissues and muscles. They compared it to the exercise pain an untrained person running a 10k marathon would endure. Tuesday morning was the next time she got up and then things started going slightly faster after that. Allie worked very hard and forced herself to work her arms and legs to get work out those muscles. Tuesday night they moved us to the trauma floor where by the next afternoon(yesterday, Wed) Allie was able to with the help of a wheelchair and myself, and they dismissed us go around 5:00PM.

Right now she is still in extreme pain and is only able to take Tylenol. She has gotten some of the use of her arms back and shown much improvement today. We had been able to use Fentanyl for a short term pain medicine but it eventually caused too much nausea and other bad side effects. Unfortunately those are the only two pain meds she is known to tolerate. She is working hard to get better but it is going to take long time to get there. The doctors don’t think she has permanent damage in her feet but cannot say for certain at this time. It’s a wait and see situation. The nerve pain in addition to the tissue damage is excruciating but she is working through it. I’m so proud of her. We also got her pathology report back and there is no cancer(Paget’s Cancer). So very happy to get this news.

Thank you all for your prayers and support,

~Jeremy”


| February 29 at 8:28pm

“I have missed you all so much! A HUGE THANK YOU from me and Jeremy for your wonderful prayers, thoughts, support and well wishes!! I will answer each one of your messages as I can I promise. You all have blessed me/us in many ways and we are so very grateful! I am so glad to be back and starting to turn a corner, even if it is a little bit. I will take it! I can not even begin to tell you what the last two weeks have been like. I have shocked many times and been on a vent before. Even on the vent longer than this time unable to breathe on my own. But this time was different in many ways. The min they got me intubated in the operating room my lungs cinched up and stopped working. My throat tightly closed around the intubation tube. Within seconds I was a dark plum purple color as I was severely hypoxic. After hours of over 40+ people working on me my blood pressure finally stayed up to about 70/50. It had been only staying in that range and sometimes higher for 30 seconds to a min then would bottom back out again sometimes dropping as low as 30/20 and even to unreadable numbers I was told. They would do another push of epi, work on me some more, and it wouldn’t help. This went on for hrs and even with the Vasopressen. It seemed when one nightmare would end, there was another one and then the spiraling affect just went out of control. I can not thank my husband enough for advocating for me while I was unconscious during this whole time. He took good care of me and became my voice. He said he was faced with some of the hardest decisions of his life being my medical power of attorney. I am still trying to wrap my mind around all this wondering how this could happen again. But that is just the nature of Mastocytosis. Still not easy to accept. I am very exhausted, not sleeping due to intense pain and have been referred to a vascular surgeon to see if I will need surgery on my foot that got badly damaged from all this. I am now focusing on healing, trying hard to walk without assistance ( I know I can do this!!), and working with my medical team to find out what changes need to be made. My anesthesiologist who has a lot of experience with me and my masto, and over 40 yrs experience overall said he has never seen this happen before or anything like it. It has all been very surreal. Hearing several doctors telling me they do not know how I survived sends chills down my spine once again. You never get use to this. Once again,, a learning experience. It was a stark reminder just how fragile those of us with mastocytosis truly are and every day we are given is a miracle in every sense of the word. Now we are just praising God and giving Him the glory!! Thank you all again for your caring prayers and concern. You all truly mean so much to me. Love you all! (((HUGS)))” ~Allie


 

THE ALLISON WEST MICHELOTTI STORY | 09.26.14

Allison, a fellow sweller, member of my online support groups, and now friend, reached out to me in a panic last evening and, again, early this morning. She is afraid for her life, and justifiably so! Allison needs help ASAP with getting a specialist to speak with her current doctor–she is presently hospitalized with an infection–as well as the surgeons and anesthesiologists regarding her upcoming pancreatic cancer surgery in a few short weeks. Doctors are minimizing her need for post medications, alternatives and/or issues with handling the chemicals found in the anesthesia, and more. For most people with this condition, forget it, for pretty much everyone, stress is a major trigger and, right now, Allison should be as calm as possible to manage her current health state and upcoming surgery which, let’s not forget to add, can be major cause of trauma to the body for all angioedema sufferers!

Allison West Michelloti Final 02.001


Update on Allison: | 01.26.16

The ever so lovely, Allison West Michelotti has Passed: 21 November 1961 ~ 26 January 2016. We will forever love and miss our friend. Sleep in peace.

Allison West Michelloti Final 03.001


THE MEREDITH FALLOW  STORY: | 10.12.14

Meredith Fallow lives with chronic idiopathic angioedema and mast-cell activation disorders. She is a huge support to her fellow sufferers. Co-star of, “Life Without A Fork,” documentary film, advocate, and fellow sweller, Meredith is often intubated due to anaphylaxis brought on from environmental elements, foods, and stress. Presently she is also grieving the loss of her precious cat, this now number two of her beloved babies, Maui–an emotion that Meredith truly does not have the privilege in which to indulge as it will exacerbate her already potentially deadly diseases.

IAMCF_Meredith Fallow Final.001


THE TERESA SCRUTON  STORY | 10.16.14

Teresa Scruton suffers with the hereditary form of the condition for angioedema (HAE). Very early on, when even less was known about the condition, Teresa began the support group, HAE, AAE, IAE Sharing and Learning! Through her ongoing, extensive, and quite impressive research, I might add, she has kept people informed with her postings containing more of the scientific approaches to our so very unique condition. Smart, creative, and generous with the information she so freely shares with the world, she is in crisis mode today with intestinal swells and other, currently uncontrollable, HAE symptoms. As Teresa has been known to say, “Knowledge about the disease can save lives,” we feel that some action on the medical, insurance, and big pharma communities can help in expediting this life-saving objective!

IAMCF_Teresa Scruton Final.001


“DONATE NOW AND SUPPORT LIFE WITHOUT A FORK’S ONGOING OUTREACH INITIATIVES TO CURE #IDIOPATHICANGIOEDEMA!! MAKE HISTORY WITH US AND HELP CURE IA TODAY! WE TRULY APPRECIATE YOU!” #THE80PERCENT

Life Without A Fork Is A Not-for-Profit Corporation

As always, we appreciate your ongoing support.

Disclaimer: Our page is a community service to our users. The information provided on this site is meant for informational purposes only. LifeWithoutAFork.com, Inc., The Idiopathic Angioedema Global Advocacy Group, and its employees and affiliates are not responsible for the accuracy of any information herein contained. You are encouraged to validate any information we provide with proper professional consultation.


#MayYourSwellsForeverBeMinimalAtMost

#VanessaWilliams

#LifeWithoutAFork

#LifeWithoutAForkDocumentary

#LifeWithoutAForkDocumentaryFilm

#ItsAllHappening!

Like us…FACEBOOK!

Follow us…INSTAGRAM! and TWITTER!

Support us…YOUR DONATIONS COUNT


Disclaimer: Our page is a community service to our users. The information provided on this site is meant for informational purposes only. LifeWithoutAFork.com, Inc., The Idiopathic Angioedema Global Advocacy Group, and its employees and affiliates are not responsible for the accuracy of any information herein contained. You are encouraged to validate any information we provide with proper professional consultation.

 

%d bloggers like this: