Support Mel Guerison On Her Health Journey
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Hello to all,
This page is dedicated to supporting our dear friend, partner, daughter, sister, artist, teacher (the list goes on!), Mel as she is currently on a difficult health journey that has required her to cease working full time and in turn, has her seeing multiple doctors and undergoing multiple tests to find answers. Please take the time to read below about the journey she and Sam have been facing and continue to fight. As they continue to receive answers, I will be updating this page and if you have any questions or other ways you'd like to contribute, please leave me a message on here and I will be happy to assist so as not to overwhelm their inboxes :)
If you are able to help support financially or in any other tangible way, it would relieve so much weight from their sweet family.
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(The below is thoughtfully and informatively written by Mel's partner in love and life, Sam)
Mel has been my partner and the love of my life for nearly five years, I often describe her as “doing more in a day than I’ll do in a week.” She’s been a working musician her entire adult life, which has included teaching, touring in bands, being a session musician, producing and engineering records, soundtracking film, and producing commercial music.
Mel has been on a medical odyssey since the summer of 2017. We moved into a new place together the same week she returned from a tour in Russia and became very ill, and after recovering she developed a persistent cough and series of severe bronchitis and respiratory infections that year that began the three and a half year journey we are on. In early summer 2018, Mel successfully underwent excision surgery for endometriosis, at which point they very luckily caught a carcinoid tumor on her appendix. It was removed and she went along with subsequent checkups showing no spread. Besides inconclusive test results for her cough things were pretty quiet until October 2019, when she developed a painful nodule on the PIP joint of her right index finger after first starting to clean the downstairs air bnb for our landlord. Mel was tested for a multitude of things based on the presentation of the nodule and her persistent cough and was negative for various forms of arthritis, rheumatoid disorder, allergies, cancers, Lyme, lupus, and otherwise. X-rays also confirmed that there was no arthritis or change in the joint. She also saw a hand therapist and hand specialist who both said that, in all their years of practice, they had never seen or felt anything like this. With no one able to explain her chronic cough or the nodule on her right hand, her PCP decided to put her on a medication to help regulate something called Mast Cell Activation Disorder, as it was clear that something was causing systemic inflammation or an allergic, anaphylactic-type reaction that was not allergies. She kept going about her business, eventually "got used" to the coughing fits and working around the finger nodule, hoping it would just eventually go away.
At the end of February 2020, she returned from a tour and became very ill, with a brief week of feeling like she had recovered followed by a significant downturn in whatever she was fighting. We had some scary nights that we thought would send us to the hospital, but her PCP preferred to check-in and monitor her from home to avoid exposure to the emergency room as the height of COVID was building. I too became really ill. It was difficult to verify whether or not it was COVID-19 at the time as hospitals were discouraging anyone from coming in unless they thought they were in a dire medical emergency. We recovered after about six weeks, but Mel's chronic cough worsened. By the end of summer 2020, three more nodules popped up on her left index, middle, and ring finger that had that same "jammed finger" feeling when bending at the PIP joint. It became somewhat painful to play violin and guitar, but she kept going and playing every day to keep her mobility. We re-tested for arthritis and a whole slew of other things once again. All negative. We did X-rays again, nothing showed any harm to the joints themselves. We did an MRI of both hands and all it came up with was "flat nodules" and "soft tissue edema" with no specified reason or cause.
Around the same time at the end of summer 2020, a tenant moved out of the other first-floor unit (formerly the air bnb) in our building because she had started experiencing similar symptoms after only four months of living there--chronic cough, shortness of breath, hand nodules that were painful and looked identical to Mel's. We decided to have the vacant bar below us tested for mold and, sure enough, it came back extremely positive, in addition to evidence of lingering rat feces and sewer water damage. Mel's doc tested her body for mold and her test result came back off the charts high for the same type of mold that was in the basement bar. We moved and replaced a lot of things we owned and had to clean everything else vigorously and thoroughly. Initially, Mel started to feel better after we moved, and started a detox period her doctor had suggested before she was to go on a potent anti-fungal. In December, Mel's finger nodules started to look worse, and her exercise began to feel more difficult with increased shortness of breath and coughing. Her PCP decided to run more tests, seeing her once and sometimes twice a week, and in the meantime wanted to put her on an experimental low dose immuno-suppressant as an attempt to control the inflammation in her body before starting the anti-fungal. Mel had an awful and unusual reaction to the drug (a TIA- vision changes, nervous system spasms in the face and eye on her right side, and "electric shock" feelings in her head, etc.). She was immediately taken off of the drug and sent for more imaging (Jan 2021), and her original symptoms began to take quite an aggressive downturn. Previously clear lung CT scans now show something called hypersensitivity pneumonitis, though the head of Interstitial Lung Disease at OHSU thankfully thinks that this is reversible if we are able to figure out what's causing it soon since there is no scarring present yet. Brain MRIs that have been clear in the past now show two inflamed arteries pressing on the trigeminal nerve, indicative of trigeminal neuralgia, which explains the TIA and symptoms in the face, head, and eye. ECG shows heart strain, and finger nodules have now spread to every finger except her thumbs. Mel now has an entire medical team working to get to the bottom of this, including rheumatology, pulmonology, ILD, and infectious disease at OHSU, her PCP, and neurology at Providence.
Upon checking in again with the other former tenant, Mel found that they are both in similar health decline right now, with very similar manifestations and overlap in lab results. At this point what is clear to her care team is that both Mel and the other tenant have some underlying condition or genetic factor that predisposed them to immune suppression triggered by the mold exposure and likely a coinfection that could be viral, bacterial, parasitic, or any combination of these. This is not an easy diagnosis and requires an insane amount of testing and research on the part of her care team. It is further complicated by the amount of travel she has done since moving into the house and the amount of visitors that frequented the air bnb from around the world. Residual effects of COVID have also not been ruled out as a possibility. Mel's labs have unfortunately been scattered over three different hospital systems, among different doctors and specialists over the last few years, and it hasn't been until putting all of them together and organizing them that both she and her PCP are starting to piece together things that were, in fact, abnormal this whole time but difficult to see in "pieces". There are patterns, and there are more labs, imaging, and painful biopsies ahead of us now to rule things in or out. Mel has been dedicating herself to giving her body the best chance to fight through diet, naturopathic medicines and therapies, low-impact exercise, and a diligent effort to work through the labyrinth-like medical system.
As we hopefully get close to getting to the bottom of this, we are at a point where Mel has been asked by her care team to stop teaching until we are able to figure out and treat what's going on, as it is a current strain on her lungs and also very difficult with trigeminal neuralgia symptoms. Her doctors are encouraging her to move slowly and case by case with other work, allowing time for rest in between. Disability Insurance has been suggested as an option to cover the loss of income, though Mel is having a hard time with this and not sure it is necessary as we hope for a diagnosis, treatment plan, and reversal. We have also learned from a disability lawyer that it could take 1-3 years to be approved for someone her age.
Mel is mourning many things right now, including the loss of students and families that she has taught for many years and the (hopefully temporary) limitation of one of the foundational pillars of her person, her music. Mel is determined to fight, find answers and continue to compose, play her instruments and exercise during this time to keep all mobility, but the loss of her teaching income is a significant blow as medical expenses mount. We’ve gone into considerable debt during this process, including the move, replacing things, and covering the cost on tests, monthly prescriptions, and certain specialists that have not been covered by insurance.
The doctors on her team that are evaluating both her and the other tenant are working as quickly as they can, and they do have hope that they will get to the bottom of things sooner rather than later. If not, we will be referred to the Mayo Clinic. We are hoping for a diagnosis and treatment plan, whatever that may be so that Mel can get back to her life and feel truly like herself again for the first time in several years.
We thank you so much for reading our lengthy story and with humility ask for your help to contribute or share knowing full well how difficult this year has been for everyone, we love and miss so many of you.
This page is dedicated to supporting our dear friend, partner, daughter, sister, artist, teacher (the list goes on!), Mel as she is currently on a difficult health journey that has required her to cease working full time and in turn, has her seeing multiple doctors and undergoing multiple tests to find answers. Please take the time to read below about the journey she and Sam have been facing and continue to fight. As they continue to receive answers, I will be updating this page and if you have any questions or other ways you'd like to contribute, please leave me a message on here and I will be happy to assist so as not to overwhelm their inboxes :)
If you are able to help support financially or in any other tangible way, it would relieve so much weight from their sweet family.
----------------------------------------------------------------------------------------------------
(The below is thoughtfully and informatively written by Mel's partner in love and life, Sam)
Mel has been my partner and the love of my life for nearly five years, I often describe her as “doing more in a day than I’ll do in a week.” She’s been a working musician her entire adult life, which has included teaching, touring in bands, being a session musician, producing and engineering records, soundtracking film, and producing commercial music.
Mel has been on a medical odyssey since the summer of 2017. We moved into a new place together the same week she returned from a tour in Russia and became very ill, and after recovering she developed a persistent cough and series of severe bronchitis and respiratory infections that year that began the three and a half year journey we are on. In early summer 2018, Mel successfully underwent excision surgery for endometriosis, at which point they very luckily caught a carcinoid tumor on her appendix. It was removed and she went along with subsequent checkups showing no spread. Besides inconclusive test results for her cough things were pretty quiet until October 2019, when she developed a painful nodule on the PIP joint of her right index finger after first starting to clean the downstairs air bnb for our landlord. Mel was tested for a multitude of things based on the presentation of the nodule and her persistent cough and was negative for various forms of arthritis, rheumatoid disorder, allergies, cancers, Lyme, lupus, and otherwise. X-rays also confirmed that there was no arthritis or change in the joint. She also saw a hand therapist and hand specialist who both said that, in all their years of practice, they had never seen or felt anything like this. With no one able to explain her chronic cough or the nodule on her right hand, her PCP decided to put her on a medication to help regulate something called Mast Cell Activation Disorder, as it was clear that something was causing systemic inflammation or an allergic, anaphylactic-type reaction that was not allergies. She kept going about her business, eventually "got used" to the coughing fits and working around the finger nodule, hoping it would just eventually go away.
At the end of February 2020, she returned from a tour and became very ill, with a brief week of feeling like she had recovered followed by a significant downturn in whatever she was fighting. We had some scary nights that we thought would send us to the hospital, but her PCP preferred to check-in and monitor her from home to avoid exposure to the emergency room as the height of COVID was building. I too became really ill. It was difficult to verify whether or not it was COVID-19 at the time as hospitals were discouraging anyone from coming in unless they thought they were in a dire medical emergency. We recovered after about six weeks, but Mel's chronic cough worsened. By the end of summer 2020, three more nodules popped up on her left index, middle, and ring finger that had that same "jammed finger" feeling when bending at the PIP joint. It became somewhat painful to play violin and guitar, but she kept going and playing every day to keep her mobility. We re-tested for arthritis and a whole slew of other things once again. All negative. We did X-rays again, nothing showed any harm to the joints themselves. We did an MRI of both hands and all it came up with was "flat nodules" and "soft tissue edema" with no specified reason or cause.
Around the same time at the end of summer 2020, a tenant moved out of the other first-floor unit (formerly the air bnb) in our building because she had started experiencing similar symptoms after only four months of living there--chronic cough, shortness of breath, hand nodules that were painful and looked identical to Mel's. We decided to have the vacant bar below us tested for mold and, sure enough, it came back extremely positive, in addition to evidence of lingering rat feces and sewer water damage. Mel's doc tested her body for mold and her test result came back off the charts high for the same type of mold that was in the basement bar. We moved and replaced a lot of things we owned and had to clean everything else vigorously and thoroughly. Initially, Mel started to feel better after we moved, and started a detox period her doctor had suggested before she was to go on a potent anti-fungal. In December, Mel's finger nodules started to look worse, and her exercise began to feel more difficult with increased shortness of breath and coughing. Her PCP decided to run more tests, seeing her once and sometimes twice a week, and in the meantime wanted to put her on an experimental low dose immuno-suppressant as an attempt to control the inflammation in her body before starting the anti-fungal. Mel had an awful and unusual reaction to the drug (a TIA- vision changes, nervous system spasms in the face and eye on her right side, and "electric shock" feelings in her head, etc.). She was immediately taken off of the drug and sent for more imaging (Jan 2021), and her original symptoms began to take quite an aggressive downturn. Previously clear lung CT scans now show something called hypersensitivity pneumonitis, though the head of Interstitial Lung Disease at OHSU thankfully thinks that this is reversible if we are able to figure out what's causing it soon since there is no scarring present yet. Brain MRIs that have been clear in the past now show two inflamed arteries pressing on the trigeminal nerve, indicative of trigeminal neuralgia, which explains the TIA and symptoms in the face, head, and eye. ECG shows heart strain, and finger nodules have now spread to every finger except her thumbs. Mel now has an entire medical team working to get to the bottom of this, including rheumatology, pulmonology, ILD, and infectious disease at OHSU, her PCP, and neurology at Providence.
Upon checking in again with the other former tenant, Mel found that they are both in similar health decline right now, with very similar manifestations and overlap in lab results. At this point what is clear to her care team is that both Mel and the other tenant have some underlying condition or genetic factor that predisposed them to immune suppression triggered by the mold exposure and likely a coinfection that could be viral, bacterial, parasitic, or any combination of these. This is not an easy diagnosis and requires an insane amount of testing and research on the part of her care team. It is further complicated by the amount of travel she has done since moving into the house and the amount of visitors that frequented the air bnb from around the world. Residual effects of COVID have also not been ruled out as a possibility. Mel's labs have unfortunately been scattered over three different hospital systems, among different doctors and specialists over the last few years, and it hasn't been until putting all of them together and organizing them that both she and her PCP are starting to piece together things that were, in fact, abnormal this whole time but difficult to see in "pieces". There are patterns, and there are more labs, imaging, and painful biopsies ahead of us now to rule things in or out. Mel has been dedicating herself to giving her body the best chance to fight through diet, naturopathic medicines and therapies, low-impact exercise, and a diligent effort to work through the labyrinth-like medical system.
As we hopefully get close to getting to the bottom of this, we are at a point where Mel has been asked by her care team to stop teaching until we are able to figure out and treat what's going on, as it is a current strain on her lungs and also very difficult with trigeminal neuralgia symptoms. Her doctors are encouraging her to move slowly and case by case with other work, allowing time for rest in between. Disability Insurance has been suggested as an option to cover the loss of income, though Mel is having a hard time with this and not sure it is necessary as we hope for a diagnosis, treatment plan, and reversal. We have also learned from a disability lawyer that it could take 1-3 years to be approved for someone her age.
Mel is mourning many things right now, including the loss of students and families that she has taught for many years and the (hopefully temporary) limitation of one of the foundational pillars of her person, her music. Mel is determined to fight, find answers and continue to compose, play her instruments and exercise during this time to keep all mobility, but the loss of her teaching income is a significant blow as medical expenses mount. We’ve gone into considerable debt during this process, including the move, replacing things, and covering the cost on tests, monthly prescriptions, and certain specialists that have not been covered by insurance.
The doctors on her team that are evaluating both her and the other tenant are working as quickly as they can, and they do have hope that they will get to the bottom of things sooner rather than later. If not, we will be referred to the Mayo Clinic. We are hoping for a diagnosis and treatment plan, whatever that may be so that Mel can get back to her life and feel truly like herself again for the first time in several years.
We thank you so much for reading our lengthy story and with humility ask for your help to contribute or share knowing full well how difficult this year has been for everyone, we love and miss so many of you.
Co-organizers (2)
Coco Noelle
Organizer
Portland, OR
Mel Guerison
Beneficiary
Sam Schick
Co-organizer