Mold; The Silent Killer Your Doctors Might Not Consider

Mold blog article - top of shower DSC_0002

If you come into the doctor’s office with a runny nose, sneezing, coughing, or wheezing they’ll usually think it’s allergies, the common cold, or even asthma, but mold??? Chances are that has never crossed your doctor’s mind as the possible cause of your symptoms, mostly because doctors aren’t taught much about it in medical school and they assume it’s pretty rare. After running a few tests without a clear cut explanation they may send you home with a prescription for some allergy medication, run a couple more tests and when those don’t get an answer you might be told to consult a psychiatrist…but not so fast, doctor. The source of the problem could be (no pun intended) right under your nose!

With more and more buildings aging the problem of water damage and the mold that grows in it is alot more common than you might think and certain genetically predisposed (HLA–DR) individuals are not equipped to fight off the effects. Human Leukocyte Antigen (HLA) is a grouping of genes on chromosome 6.

The resultant illness is multi-systemic and falls into a sub-category of Biotoxic illness called Chronic Inflammatory Response Syndrome (or CIRS). The invading biotoxin signals the body to produce a continuous stream of cytokines creating a chronic autoimmune inflammatory condition. Patients with this genetic predisposition are unable to clear these substances on their own and therefore treatment is necessary.

Blood tests that may reveal that you have a mold-related illness;

VIP – Vasoactive Intestinal Polypeptide –                    Normal Range23-63 pg/mL

C4a Level                                                                                   Normal Range0-2830 ng/ml

TGF Beta-1 Transforming Growth Factor Beta-1               Normal Range:  <2380 pg/ml

MSH-Melanocyte Stimulating Hormone                      Normal Range 35-81 pg/ml      

HLA DRB, DQB Typing

CD57

MMP-9 (Matrix metalloprot.-9)

MSH                                                                                           Normal Range35-81 pg/mL                                          

AGA IgA/IgG                                                                                 Normal Range 0-19

ACTH/Cortisol                                                                         Normal Range:  ACTH – 8-37 pg/mL; Cortisol – a.m. 4.3-22.4 / p.m. 3.1-16.7 ug/dL

VEGF                                                                                             Normal Range:  31-86 pg/mL

ACLA IgA/IgG/IgM                                                                       Normal Range:  IgA – 0-12; IgG 0-10; IgM 0-9

ADH/Osmolality                                                                               Normal Range: ADH – 1.0-13.3 pg/ml; Osmolality – 280-300 mosmol

MMP-9                                                                                     Normal Range85-332 ng/mL

Leptin                                                                                       Normal  Range:  Male: 0.5-13.8 ng/mL; Female: 1.1-27.5 ng/mL

Urine Mycotoxin Testing; tests for 3 mycotoxins; Tricothecenes, Aflatoxin, and Ochratoxin

Visual Contrast Sensitivity Test                                                    

This test evaluates your brain’s ability to recognize contrast. You are shown a variety of patterns and objects with one eye covered and then the other viewed at a distance of 18 inches away. Although not diagnostic for mycotoxin specifically it does supply your physician with supporting evidence (get this test free) here or for a donation obtain added benefits. It is recommended that the results be confirmed with a physician repeating it in the office in-person.

 (most or all of these are available through your doctor’s office and their lab, and some or all may even be covered on Medicare/Medicaid).

Dr. Ritchie Shoemaker a revolutionary in the innovative treatment of Lyme Disease also is well known as a physician who treats mold and has written extensively on Biotoxin illnesses. Read more in depth about his theory on Biotoxin Pathways here.

In addition to the more typical upper respiratory symptoms patients affected by mold can also experience others that may not immediately appear to be mold-related.

Symptoms

muscle pain, cramps, burning, unusual shooting (ice pick-like) pains

headaches

fatigue, weakness, flu-like symptoms, fever, chills

shortness of breath, cough

abdominal pain, diarrhea

chronic sinusitis, sore throat

burning eyes, red eyes, sensitivity to light

difficulty with thought processes, memory loss, loss of concentration, confusion, disorientation, “brain fog”

dizziness, balance problems

metallic taste in mouth

numbness and tingling

night sweats

temperature regulation problems

excessive thirst and urination

rash

excessive menstrual bleeding

mylar flush (face flushing)

chest pains

IgA nephropathy (kidney disease)

Increased infections

The sensation that you are going to pass out

Panic attacks

Tremors

Attention deficit disorder

Vision problems

Swollen lymph nodes

Anxiety, depression

Difficulty losing weight (in detoxifier types)

Ringing in the ears

Hearing loss

Chronic fatigue

Multiple chemical sensitivity (stachybotrys and chaetomium)

Nose bleeds and pulmonary hemorrhaging (stachybotrys)

Bruising, hives

Infertility, miscarriage

Fibromyalgia

Chronic fatigue

Multiple sclerosis like symptoms

Dirt like taste in mouth

Cancer

Hair loss

Joint pains

Irregular heart beat

Heart attack

Seizure

Muscle twitching

Anaphylaxis on re-exposure to toxic molds

Air hunger, can’t get a deep breath

Child developmental delays

Apathy

Difficulty handling any kind of stress

Mood swings, irritability

Frequent upper respiratory infections

Sensitivity to sound

Nausea, vomiting

New food allergies

Jaundice (yellowing of the skin or eyes)

Poor insight into illness

Stomach ulcers

Death, in extreme cases

I’m thinking there is a possibility that inhaling mold spores in my environment could be causing or at least contributing to my chronic illness and so I’m asking my doctors to run any tests they can to rule it in or out. Given the range of symptoms that can come from mold exposure it is not unreasonable that this may be the culprit (or at least part of it) and it would explain why doctors have been unable to identify the cause as of yet. In order for tests to come up positive one has to have some idea of the right tests to order in the first place.

In addition I’m looking into getting my home tested. If mold is found in my house then chances are high that it’s in my body as well, especially if it’s black mold, or Stachybotrys.

 Testing Your Home

There are a number of products on the market to test your home for toxic mold.Dr. Mary Ray D.O., a primary care physician who practices in Jacksonville, Florida, and mold survivor herself has created an educational website to let the public know about this problem and things you can do about it. It is an invaluable resource for anyone who is chronically ill to read and consider, as every little bit helps when your health is compromised and your immune system, vulnerable.

One piece of equipment Dr. Ray suggests is a moisture meter since mold thrives in a damp environment. The one linked above is the model she recommends which gives you the most bang for your buck.

In addition to a moisture meter a Borescope (a tube with a small camera in it) can help identify what may be hiding inside your walls that you can’t see with the naked eye. To use one of these you cut or drill a small hole in the wall you want to see behind and snake the tubing through it. This device connects to your computer via a USB cable and allows you to take video or still shots of the inside of your wall where mold often grows.

If you don’t see it on the outside of your walls it doesn’t mean it doesn’t exist. Sometimes the areas you can’t see are the source of your problem and having a tool like this can allow you to identify areas where you have mold that otherwise would go undetected. This can also be used to look inside your ear, nose, and throat, to see possible problems in the body. See a more in-depth description here .

Other testing methods such as the IAQ 5 Minute Mold Test, Instant Mold Test, Examineair Mold Test, the ERMI DNA Mold Testing, Predict Voc (Micotoxin) Test are outlined here.  

An array of dehumidifiers, air exchanges, and air purifiers are available to reduce the number of mold spores you’re exposed to. This is especially helpful when you can’t afford to fully rid your home or workplace of the substance and when you can’t feasibly move. I own my home and it’s paid off, so moving isn’t an option for me since I save money by not needing to pay rent or house payment.

Living on Disability income of less than $800/Month I do not have the money to pay out of pocket for my house to be remedied but have been searching for a non-profit or someone who would be willing to donate their services to do the work to remove the mold and prevent its regrowth. It has been like finding a needle in a haystack. Many of the agencies just have a voicemail and don’t call back when you leave a message. I contacted one ministry with a voicemail that says due to the huge need for handyman services it may take several weeks for them to return your call and if you don’t hear anything after that to call them back. Needless to say, that doesn’t inspire alot of confidence.

I’ve noticed more often lately my nose starts pouring mucus, and at times sneezing and stuff flies out. It’s gross and I can actually feel the increase in histamine!

The EPA and CDC tell me that many of the services available to the elderly and disabled won’t do mold removal because of “liability”. I’m not sure why they’ll take the “liability” for a huge fee from the client but not on grant money from the government. Seems to me it shouldn’t matter who pays them. The job is the same either way. They just need to wear protective gear to avoid inhaling the stuff while they’re removing and replacing materials in the home.

If anyone is reading this who has a business of this type or can arrange to provide such help please leave a comment below and some contact information. I am located in Stone Mountain, GA. just outside the Atlanta area. Your help is much appreciated.

Dr. Ray has an online consulting service as well as a Facebook group for people who have mold-related illnesses or think they might have one. She does sell supplements (something I’ve never been a big fan of) but you should evaluate for yourself whether you think those will be of help in your individual situation.

She offers a free newsletter, so I don’t think she is in it for the money although I know that many of the expenses for conditions like these are not covered by health insurance so I’m sure that she and others need to do something to raise money in order to get all that they need to treat their home and their bodies.

Dr. Ray’s website covers numerous possible treatments for the body as well as for your home. A list of mold-knowledgeable doctors is available here

Treating Your Home for Mold

Before starting to clean, turn off furnace and air conditioner and cover vents to prevent blowing spores around in your home. If the problem is severe enough that you can smell mold in your house wear N-95 or P-100 respirators.

Dirt and mildew can look the same way, so test areas with bleach to see which it is in any blackened areas. If you put a little bleach on it and it lightens after a minute or two then it is mildew. If not then it is most likely dirt.

Wood can be tested with a sharp implement like a screwdriver to see if mold or mildew has infiltrated the surface. It it’s soft upon doing this or crumbles that indicates that the surface has been begun to rot and that the mold has gone deeper into the wood.

For areas you can access such as wall corners, baseboards, and bathroom fixtures use 1/2 Cup Bleach/1 Qt. water (or a 1-8 water and bleach solution).

For the areas between bathroom tiles apply a grout sealer to prevent mold from infiltrating the surface again. (Never use any ammonia-based cleaner with your bleach, as this mixture emits toxic gases).

Mildewcide is contained in most paints nowadays used in bathrooms, but is also available as a separate substance that can be applied in bathrooms.

Walls that are infested with mold need to be cut open to air out and spray solution such as white vinegar on wood if wood is not too badly infiltrated. (Note that bleach will not kill mold beneath the surface of porous surfaces). In some cases, especially when there is rotten wood, these areas of wood and/or drywall might need to be cut out and replaced with pressure-treated wood.

Hard to remove wood can be sprayed and then after dry treated with wood preservative. When carpet is affected, remove this with utility knife in 6-8 foot sections and spray the floor beneath with the above bleach solution to neutralize the mold spores (while running a fan in the window or out the door and wearing protective clothing).

Dehumidifiers and fans should run for 3 days after clean-up has been completed. Bare earth floor in crawlspaces can hold in moisture and promote mold growth in the floors above, so cover the ground with 6-mil poly sheeting. This website gives you instructions for a variety of other cleaners you can use to eradicate mold from your building such as borax, vinegar, even tea tree oil.

If your problem is more severe and mold is hiding in hard to access areas you may have to call a professional which can run anywhere from about $500 – $6,000 depending on how widespread it is and where the mold is located. Your homeowner’s insurance may or may not cover this, and there may be add-on coverage to your existing policy.

If you’re renting then it’s important to look into what your rights are in the state in which you live. In some instances if your building management won’t adequately clean up your residence you may have grounds to get out of your lease early without paying a fee and in some cases they may be liable for damage to your items or to your health if they’ve failed to take the proper maintenance steps to prevent and/or keep this problem from recurring.

Prevention

Preventing the re-growth of mold is important and one of the main ways to do this is to seal off any sources of moisture in the home or workplace, as these are what allows the mold to grow and reproduce.

The most likely culprit in my home is where the fireplace lets in water when it rains. It leaks in through the chimney and spills over onto my carpet when it’s raining hard. Although this dries pretty quickly if it only rains for one day there have been times of the year when it rains for a week straight and this can stay damp for awhile in those instances.

Mold blog article - fireplace DSC_0009

I recently saw a new primary care doctor who said she thinks my Adrenal gland may be malfunctioning. She may be onto something with that hypothesis, as it seems that mold can affect endocrine function including the Adrenal gland. She is referring me to an endocrinologist for more involved bloodwork. So far I really like this doctor. She is young and still seems excited about coming to work each day and she thinks outside the box!

I spoke with her about getting IV saline for the Dysautonomia and she is willing to order it as soon as my neurologist faxes her something saying she’s OK with it. With all the health crises I’ve had recently it will be a huge relief to finally get this in the works, and while this may only be part of the solution, I think it’s an important part because the proof that it helps was very evident when I was hospitalized at Piedmont.

Interestingly she said that the fact that saline helped indicated that there might in fact me an endocrine problem that includes dehydration. At the time I had not yet read about mold and it’s symptoms in the body but later it made sense that excessive thirst and dehydration are two of the symptoms of mold toxicity.

I’m really glad I trusted my gut and didn’t believe those people who tried to get me to think I was crazy. I might have wasted lots of precious time having my head examined as I continued to get worse. I’d made that mistake years ago when I was having more pain on my left side at a time in history when it was in vogue to think every physical symptom was caused by “stress” or “conversion” and the therapist and a psychiatrist both had good instincts and told me they thought I had something physical wrong that needed to be worked up. Lo and behold, soon after things started finally showing up on bloodwork. If Dr. H who said “It can come back”, (meaning conversion disorder) is reading this, well I never had “it” to begin with and I’m sure I don’t now. Shame on him and on Dr. B for thinking that way!

Reverting to that mind-set with a patient is really taking a cheap shot and considering the newer symptoms have only just appeared and worsened in the past year, giving up and throwing in the towel in that short a time is rather wimpy if you ask me, considering that many chronic illnesses are life-long.

What are you going to do, doctors, just keep shuffling your patients like cards until you get the hand you want? Life doesn’t work that way. It seems ironic that one would go into a job that involves treating disease and expect all their patients to instantly recover.

It would be nice if all illnesses were short-term like a cold or the flu, but that’s not reality, and with today’s environmental issues increasing due to climate change, pollutants, mold, and an increased bacterial load as people age along with GMO and “enriched” food supply, chances are you guys are going to see a larger and larger proportion of your practice taken up by people who are or will become chronically ill, so you’d best prepare yourselves emotionally for that eventuality or start planning your exit strategy now and retirement or re-training to enter a completely new field because this is just the way it is.

Despite our best efforts we patients will get sick and sometimes from things we can’t bounce back from. Getting angry will not fix it, nor will shifting the responsibility onto another doctor. It’s not just me. It’s everywhere.

This past weekend I went through a storm of symptoms including stuffy nose and mucus pouring from my nose like water on top of the near fainting spells, severe nausea and GI upset, increased muscle pain, myoclonus, and headache (which earlier in the week landed me back in an ER it was so violent). It really wasn’t until sleeping and taking pain medication and Ibuprofen for inflammation all weekend every 6 hours like clock-work that the cycle seemed to break and I could eat something and feel up to doing anything.

There is clearly some systemic underlying inflammatory process going on. It will just require doctors with some patience and interest to find out exactly what it is. The answer is not to get rid of the patient nor write them off as nuts and to stop trying, but instead to try a new angle, and if a doctor is so burnt out he can’t manage to do that then maybe it’s he who needs to leave and go do something else. The field of medicine requires patience and a level of commitment to the patient even when the answer is not evident on the surface.

These are huge problems in need of compassion and persistence. They are not a failing on the patient’s part, they are here to stay, and managing them is a delicate balancing act.

It seems the best way for a doctor to approach them is to first acknowledge that we live in an era in which genetics has met up with epigenetics and understand and accept that there are no quick solutions. Sometimes you just have to try some things to see what works, not be immobilized for lack of a diagnosis, and reconcile to working within that reality. That is where art meets science.

 

Advertisements

Getting In-Home Help; Advice for the Homebound Patient

DSC_0027

Being chronically ill there are times we need help with certain aspects of everyday life. If you’re lucky enough to have a good support system of people living with you and/or coming to your home to help with things like grocery shopping, cooking, bathing, house cleaning, running to the pharmacy then this might not pose a difficulty for you (other than the initial embarrassment of having to ask for the help you need, or worrying about whether the people in your life will feel imposed upon).

If you have nobody to help with such activities because either nobody you know commits to help out or those people in your life are limited because of work obligations during a large part of the week, you may need to look into hiring a professional service.

At the outset this can seem a monumental task especially when you’re fatigued or brain-fogged, but it is often essential.

To many homebound/bed-ridden people this can make the difference between having quality of life or not, and sometimes it can even be a matter of survival if for instance you run out of food and are unable to go to the store yourself and get what you need to eat, or you run out of medication or need a new medication urgently for an acute medical problem and have no way to get it yourself.

The idea of having a total stranger coming into your home to help with activities of daily living can be a little unnerving but there are steps you can take to make it less scary and more safe. There are a whole array of agencies and individuals who provide home-based care and their fees vary depending upon the level of skill they have, their education and licensing, and often the length of time they have experience in the field.

One can find relatively basic care-givers who have informal experience taking care of a loved-one, all the way up to people who are licensed to provide skilled nursing duties, and everything in-between. The majority of this work, though, is performed by CNAs (Certified Nursing Assistants).

You will want to ask agencies whether they’ve done background checks on those they employ and what those checks consist of, whether they do a drug-screen, check references, etc. If you are able you might also want to do your own once you have picked out or are assigned a specific care-giver. You might even want to place a “nanny-cam” in your home as a safety measure. While in-home abuse or neglect by professional assistants is relatively rare statistically (especially when you obtain someone from an agency), it does happen, so although you might never run into such an incident, having daily activities on videotape is a good idea if you have the means to do so. This also verifies that activities performed in other parts of the house not in your presence are being completed, as agreed.

Once you meet the person you should also ask them what kind of experience they’ve had with your type of illness, assess how much they know about it, how willing they are to learn about it, and tell them your needs. You will get a sense of how they are from their response. If they sound confident and receptive to what you need them to do then they are likely a good fit.

If on the other-hand they are resistant to providing this or that, or they sound oppositional, ill-equipped either experience-wise or emotionally this is a red flag and you should ask for somebody else. Even on Medicaid you have the right to request a different assistant if you do not feel comfortable with the one assigned. If you are paying privately you will have the opportunity to interview a variety of people at the outset and choose one.

You can find personal assistants on sites such as Care.com and Angie’s list, as well as through senior and disabilities organizations, the United Way helpline, and on the internet.

These agencies and individuals generally fall into two categories; private pay, and Medicaid. (Generally Medicare does not cover these services and neither does private health insurance). Occasionally a long-term care insurance policy might cover this type of help but not all of these services accept it as payment, so you might have to do alot more calling around to find one that does.

If you’re on Medicaid (either as your primary or secondary insurance) and you are having significant problems doing things such as cooking and cleaning, bathing, or getting out of the house to buy things you need you will likely qualify for one of Medicaid’s Waiver programs.

Medicaid is state-funded, so the programs in your area will vary based on what your individual state offers, but most states have some help of this type available. Generally you would call your local Medicaid office to find out what the process is and they will send you forms to fill out about your needs.

If you live in a country other than the US it is likely your country offers something similar. I know that the UK has a very good government funded system of professional care-givers (which makes ours pale in comparison and is generally free), and Australia has one as well.

Each Medicaid Waiver category has slightly different criteria and there may be several offered, so you may want to ask them to send you a booklet on all the ones in your area to decide which one best fits your needs and situation. There are usually waivers for adults and ones for children. Since there are a large number of applicants needing help and funding in this day and age is limited there is likely to be a waiting list even after you’re approved, so it is best to apply as early as possible so you’ll be less likely to end up in a bind.

Still sometimes applying promptly doesn’t guarantee that services will come through in time and when that happens getting the help you need may be costly or downright inaccessible.

I recently ran into a situation in which I had to have a colonoscopy and Emory was going to cancel it if I didn’t have somebody with me. I’d already drunk the prep and gone through considerable upheaval by the time they told me my having nobody to come with me couldn’t be accommodated, so I had to pay about 1/4 of my monthly Disability check to hire someone for the day. Had it fallen in the middle or end of the month I literally wouldn’t have had the money to do it, and even now I cannot pay other bills because I’m out the money that ordinarily would have been used to pay  my  monthly living expenses.

I called the same agency I’d applied for the Medicaid waiver through (ironically just a week or two later Medicaid approved me for the program). They emailed me a contract to sign and added a credit/debit card on file for them to charge once services were rendered. My experience overall was good and it gave me a chance to test-drive the service and get a feel for what it was like.

A woman arrived at my house on time the day of my procedure. She was personable and I filled her in on the situation and we talked while we waited for transportation to show up. She loved dogs which is a plus, since not all of them do, and went to speak with Carmella who was whimpering in the kitchen wanting some attention. She told me she had done this type of work for many years and told me about some of the clients she’d worked for.

Things went smoothly. The only thing I would change is I could have used somebody a little more assertive, as there were a few times when people at the outpatient center were not listening to me and taking my special needs into account where I needed her to step in and back me up. She was rather flabbergasted at these incidents though and noticed that some people were not respecting my dignity and were treating me like a number. She noticed, for instance, that after her colonoscopy they had her in recovery for about 5 hours while they rushed me out after only about 15 minutes and that they tried to unhook the IV before all the fluids had finished.

On Friday a woman from the agency came out to my house to complete a nursing assessment once they’d determined that I’m eligible through Medicaid. She asked me what my needs were and my limitations. (I believe the nurse comes out once every 90 days).

I was approved for an assistant 6 hours per day/5 days a week (which isn’t bad for the type of waiver I applied for). This is a huge relief, as so much has had to go by the wayside because I just can’t do all these things myself anymore. Just going to a doctor’s appointment and being out of bed that long is extremely taxing for me, and vacuuming the floor is now pretty much impossible. I have no way (nor the physical strength or stamina) to lug a load of groceries on my wheelchair from the grocery store, so having somebody who has their own car is crucial. Next month I am going to need to replenish alot of food and supplies, as things have run out and I’ve been unable to go to the store myself. Now that my stomach is so unpredictable I will need to have a large, ready supply of things like chicken broth and the weight of just 4 of those boxes of broth weighs quite a bit. Carmella’s dog food is more than I can lift these days too.

Apparently Medicaid doesn’t pay for mileage for an assistant to drive their own car to go to the store, pharmacy, etc, so that is charged .70 per mile private pay. I may need this once to about 4 times per month and the distance to most of the stores and pharmacy isn’t far, so I don’t think that will be too much of a problem.

I made a list of things that I need for the assistant to do. Most agencies will give you a ring binder with timesheets and other information in it. You should add your list to it so that whatever caregiver you get can easily refer back to it. Explain to them verbally (and if possible in writing as well) how and when things need to be done, whether you’re on any special diet, whether you have any food allergies, food brand preferences, what you generally eat for meals, and any other special needs you have that they should be aware of.

Make sure to ask the agency what their back-up plan is in case the assigned care-giver is out sick or has a family emergency and how quickly they can get a replacement.

With concise organization and clear communication your assistant will make your life easier and less stressful so that you can focus on things other than logistics. This is invaluable and can save you alot of frustration and prevent you from over-extending and over-tiring.

(I’m now participating in the Chronic Friday Link-Up with BeingFibroMom).

 

 

Medicare Home Infusion Site of Care Act of 2015; S275 HR 605 – Your Support is Crucial

As we speak new legislation is being proposed which would help many people obtain IV Saline infusions at home; the Medicare Home Infusion Site Care Act of 2015 .

Bettemarie Bond, a patient with Dysautonomia including a malfunctioning GI tract, and Mitochondrial Disease, once able to obtain these helpful infusions, suddenly found herself unemployed and on Disability and at the mercy of the Medicare system for all her medical needs. No longer covered by her previous employer’s private insurance, the stark reality hit her full in the face as she realized that she was unable to obtain them.  

Her self-advocacy led to the launching of a grass roots effort in her hometown in Philadelphia to get Medicare to cover home infusions. Little did anybody know that her online petition would gain such traction on a Federal level and interest some key legislators!

Kendall Van Pool, Vice President of Legislative Affairs for the National Home Infusion Association,  wrote an article here which goes into more detail about this ground-breaking piece of legislation and a few other related bills.

The original bill, HR 2581 contained verbiage which would not have allowed infusion at home, as it would contain a change in method of reimbursement referred to as Average Sales Pricing (otherwise known as ASP). This is a reimbursement method that applies to physician reimbursement (and in particular applies to delivery in an “outpatient hospital” department). Falling short of true access by patients who are often homebound, several legislators were concerned that such legislation as the first version was too restrictive in not allowing patients the choice to be treated at home with this modality.

Next came HR 6, the 21st Century Cures Act. Chairman Fred Upton (R-MI) of the House Energy and Commerce Committee is hopeful that this version passes in the Senate.

To contact Kendall Van Poole you can call;

(703) 838-2664 or e-mail him at Kendall.VanPool@NHIA.org  

An election year; 2016 could be just the right time for Congress, and thus Medicare, to fully embrace this option if enough patients, families, and healthcare professionals come out in strong support of this exciting new legislation to give patients more choice and flexibility in their treatment and in what setting it’s delivered.

Those of you who follow this blog regularly know that this is something that has helped me when I was hospitalized in November and that my struggle continues to obtain regular IV Saline infusions at home for my Dysautonomia. As my gastrointestinal difficulties continue to increase I am finding it difficult to add any more pills to the growing number I must take by mouth. My GI tract really can’t tolerate anymore by mouth, so for people like myself and Bettemarie Bond, going the IV route makes better sense than to try to force more pills down one’s throat into a stomach which is already compromised and most likely not absorbing what it takes in.

For those who can get it IV Saline can make a notable difference and allow one to enjoy life despite one’s chronic illness, while those who cannot get it often suffer a long and agonizing medical decline and de-morale as they continue to find these infusions always just out of reach and at best short-lived while only receiving them in an infusion center or within an inpatient setting (insurance or money permitting).

Notice in her video clip above that Bettemarie says she had her heart rate drop during a procedure. This just happened to me today as I was having a Colonoscopy. I had a really rough time even before going under mild anesthesia; suffering chills, dehydration, and changes in heart rate, as well as Myoclonus triggered by the body’s inability to keep me warm enough.

Ironically the nurse who had hooked up my IV saline before I was taken to the room where I had my procedure had in her haste not secured the tubing to the IV and another nurse found me bleeding all over the bed and the Saline half empty leaking on the sheets. Having gone through drinking the prep (which invariably strips one of electrolytes) and then not drinking my usual 24/7 ice water in the few hours prior to the Colonoscopy left me all the more in need of all the Saline I could get. I had to fight to get the nurse to wait in recovery for the last bag to finish because she was in such a rush to hurry me out the door and to fill the bed with another patient. It was as though I were a car at the local Jiffy Lube rather than a human being in need of care after coming out of the Propofol.

It didn’t seem to matter how many times I reminded them of the fact that I am Dysautonomic. It was as though their biggest concern was for their employer and the dictates of the facility, not so much for my best interest. I found it crass that they were more invested in meeting a quota of patients served per day than in serving the individual patient with the dignity and care that all human beings deserve. (I will say that the one man in anesthesiology who mentioned my heart rate dropping was an exception to the otherwise high-volume/low quality workplace. He did go out of his way to make me as comfortable as possible given my complex medical fragility, and for that I am thankful).

Let’s all work together to make this legislation the law of the land. Leave a comment, share, write your representatives in Congress, and/or CMS and HHS, and sign the petition so that the Medicare Home Infusion Site Care Act can improve the lives of Medicare patients who need/benefit from home infusion. Although not a cure, these infusions can make life more meaningful and reduce suffering until cures can be found.