In Search of Severely Ill, Bedridden ME/CFS Patients

Reblogged from Sue at Learning To Live With CFS:

I saw this announcement in the New Jersey CFS Association’s newsletter:

“Dr. Lapp Seeking Severely ill/disabled patients
From: Hunter-Hopkins ME-Letter Sep 2013
Dr. Charles Lapp:

We are seeking to learn more about PWCs who are severely ill and bedfast. Such individuals are unable to consult with physicians and may not be getting adequate healthcare. Both the Centers for Disease Control and the International Association for CFS/ME and FM (IACFS/FM) are considering programs to identify and assist such patients. If you know such an individual, please email Dr. Lapp (cwlapp@drlapp.net ) with the patient’s initials (only) and city of residence. If the person is willing to be contacted, please provide a telephone number and/or email address. Thank you for your help!”

Dr. Lapp is one of the top ME/CFS experts in the world, so this sounds like a fabulous opportunity for patients who can’t normally get out to see any doctor, let alone one of the best in the world.

In addition, responding to this initial survey will help the CDC and IACFS/FM to understand how many of us are out there, unknown and uncounted. Privacy will be protected, as they only want initials and location as minimum information.

If you or someone you know is severely ill with ME/CFS, please contact Dr. Lapp at the above e-mail to at least get counted and maybe get some long overdone medical attention, too.

Surgery and ME/CFS

After two weeks of wonderful, solid sleep with few awakenings, I was beginning to see the light. Over the long weekend I started to feel more normal than I have felt in months ~ maybe a year. I could do so much more during the day and I was still feeling alright before bed. I didn’t have any periods of utter exhaustion or flu-type feelings and my brain was firing on more than one cylinder (not all cylinders, but obviously more than usual). My physical therapist and I always talk about movies, tv shows, music and books and I can never come up with names or titles: “Oh, you should read… I can’t think of the name… it’s written by what’shisname… you know, the American guy that was living in England…” I get so frustrated. There have been many times I wish I could text him after I get home and can look up the ten things I was reaching for. Yesterday, my brain was a smooth operation. It truly felt like somebody had lubricated the synapses. There was a sense of physical spaciousness. It was a well-oiled, humming machine, almost like my healthy days. “Edward Norton was great in Primal Fear. I loved him in American History X… Yes, I adore Kevin Spacey. He was so good in American Beauty. And Seven! Oh, and the David Mamet play… Glengarry Glen Ross ~ so good! And Swimming with Sharks. I’d love to be able to see him in Iceman Cometh on stage…” All those names! They just came to me! No searching, no hard grinding mental gears, no giving up in frustration. It just illustrated the limits with which I’ve been living.

Anyway, last night I didn’t sleep and I feel dreadful today and my head hurts and my brain hurts and I fear the worst for a downhill turn. I got 4 very broken, very uncomfortable hours of sleep because, in the middle of the night, I woke up with a terrible pain in my abdomen. It is a recurrent sharp stabbing in the upper right quadrant, which has me grimacing and sucking in air every few minutes, trying not to gasp or moan so my dog doesn’t panic (which he does when I’m in pain). Throughout the night, I did everything I could think of: walked, sat, breathing exercises, massaged, drank water… Nothing helped and it is still with me now, nine hours later and definitely has me worried. I assumed it is a issue in my bowel because that is where all my problems lie, but I spent the night lying in the dark quiet, worrying that is my appendix (also, I had a bowel movement and nothing changed). I’m not vomiting and I don’t think I have a fever, so I’m not jumping to see a doctor. But the pain hasn’t dulled at all and I am so, so tired. If it continues into tonight, I won’t get any sleep again.

As I lay there last night, I was tormented by the thought that it would suddenly get more serious and I would need surgery for something. I thought about all the info that I would want doctors and anesthesiologists to know in an emergency situation and decided I had to get up and write a doc that my husband could produce if I were incapacitated. Below is what I put together and I thought it might help someone out there. I wrote my own list and, afterwards, I read Dr. Cheney’s and Dr. Lapp’s advice online (to make my list more thorough) and it is incredible how closely I fit the ME/CFS mold. After two years it still amazes me when my health history PRE-ME fits all the symptoms and idiosyncrasies. For example, vasodilators are problematic to ME patients and I already knew this was a problem for me before becoming sick because of my history with idiopathic anaphylaxis and alcohol causing collapse. Also, the doctors mention sensitivity to epinephrine and I have always told my dentists not to use epinephrine in my shots ~ it has been a nusance for them because they have to give me injections over and over again as my body metabolizes the anesthesia so quickly without the epi. And I had low blood pressure and experienced vasovagal syncope decades before I came down with ME, so reading that Dr. Lapp says “Up to 97% of persons with CFS demonstrate vasovagal syncope” amazes me … still.

I would love to know if anyone has any more information for safe surgeries and/or hospital stays. I’m hoping preparing for emergencies can mitigate long-term crashes.

Here is Dr. Cheney’s advice for surgery and here is Dr. Lapp’s (they’re very similar). I also took Sue Jackson’s advice and made the first sentence: “The most important considerations are…”

The most important considerations are IV fluids, avoiding vasodilators and histamine-releasing agents, and my hyper-sensitivity to medications.

I have a history of hypoglycemia, idiopathic anaphylaxis, autoimmune urticaria and angioedema, Hashimoto’s, vasovagal syncope.

I am allergic to NSAIDS and CODEINE/HYDROCODONE and have other presumed allergies which may have caused tongue swelling (see attached list).

I have orthostatic intolerance (OI) and vasovagal syncope: low blood volume, low blood pressure, high heart rate when standing/moving. Please give me extra saline IVs. Care should be taken to give me adequate hydration prior to surgery and avoid drugs that stimulate neurogenic syncope or lower blood pressure. Syncope may be precipitated by cathecholamines (epinephrine), sympathomimetics (isoproterenol), and vasodilators (nitric oxide, nitroglycerin, a-blockers, and hypotensive agents).

I am extremely sensitive to drugs, usually taking ¼ doses or children’s doses. Please use all drugs sparingly until my reaction can be assessed and do not over-medicate me.

Vasodilators, such as nitrous oxide, should not be used because of my history with autoimmune angioedema, anaphylaxis and orthostatic intolerance.

Use anesthesia that does not release histamine: Histamine-releasing anesthetic agents (such as sodium pentothal) and muscle relaxants (Curare, Tracrium, and Mevacurium) are best avoided because of my history of idiopathic anaphylaxis and allergies.

Use a non-hepatic anesthesia: Potentially hepatotoxic anesthetic gases should not be used, such as Halothane.

BEFORE SURGERY: Serum electrolytes, magnesium and potassium levels should be checked preoperatively and these minerals replenished if borderline or low. Intracellular magnesium or potassium depletion could potentially lead to cardiac arrhythmias under anesthesia. A liver panel and a random serum cortisol should be checked prior to any general anesthesia. 24-hour urine cortisol is recommended before and after surgery.

I have a sensitivity to Epinephrine. For local anesthesia, perhaps use Lidocaine with no epinephrine.

I have a cervical spine injury. Please be careful and gentle when intubating!

It would be wise to keep me on oxygen the entire time I am in the hospital.

Prescription and over the counter medicines and supplements: Please see attached list.