To be sure of the wording, I’ve copied the following small portion directly from the Lymphedema website.

XXXX
“About The Bill
For the most current information about the bill, scroll to the bottom of this page.

Congressman Reichert, our lead bill sponsor, and advocates from his state of Washington
Why This Legislation Is Needed
Currently, Medicare, and consequently many other policies, does not cover one of the critical components of lymphedema treatment, the medically necessary compression supplies used daily in lymphedema treatment. As a result, many patients suffer from recurrent infections, progressive degradation in their condition and eventual disability because they cannot afford the compression supplies required to maintain their condition.
Although this legislation relates specifically to a change in Medicare law, it would set a precedent for Medicaid and private insurers to follow. States have already recognized that coverage for comprehensive treatment is essential and cost saving, and are beginning to require that private and state plans provide this coverage. Lymphedema treatment mandates have been in effect in North Carolina since 2010 and in Virginia since 2004, and several other states have similar legislation pending.

Medicare’s failure to cover compression treatment supplies stems from the fact that these items cannot be classified under any existing benefit category in Medicare statute (law). The Center for Medicare Services (CMS) does not have the authority to add or redefine benefit categories, only Congress does, hence the need for this legislation. This is explained in more detail in a written exchange between our bill sponsor, Congressman Reichert, and former Health and Human Services Secretary, Kathleen Sebelius. Click here to read their correspondence.
What This Legislation Would Do

The Lymphedema Treatment Act (LTA) will improve coverage for the treatment of lymphedema from any cause by amending Medicare statute to allow for coverage of compression supplies.

Specific goals of the LTA are as follows:

to provide comprehensive lymphedema treatment coverage, according to current
medical treatment standards;
to enable patient self-treatment plan adherence by providing necessary medical supplies
for use at home, as prescribed for each patient (including gradient compression
garments, bandages, and other compression devices);
to reduce the total healthcare costs associated with this disease by decreasing the incidence of
complications, co-morbidities and disabilities resulting from this medical condition.

The HHS Secretary has confirmed that a change in statute is necessary to allow for coverage of compression supplies. (See section above for details.) The Lymphedema Treatment Act will amend Sec. 1861 [42 U.S.C. 1395x] of the Social Security Act to enable coverage of these items under Durable Medical Equipment.

Details surrounding coverage, such as allowable quantities, etc., are not something that is written into statute. Matters of this nature are determined by policy decisions made after the legislation is passed. This allows flexibility to adjust policy as needed in the future, without having to pass new legislation.

Additional Information about the Lymphedema Treatment Act

Our current bill sponsors are: Representative Dave Reichert, WA-8 (lead sponsor); Representative Leonard Lance, NJ-7 (co-lead); Representative Earl Blumenauer, OR-3 (co-lead); and Representative Bruce Braley, IA-1 (co-lead). To read press releases from these offices about their introduction of the bill click here.

A complete list of current cosponsors can be seen here.

A PDF of the actual bill can be viewed and downloaded here.

A “scoring” report for the Lymphedema Treatment Act can be read here. A “score” estimates the federal costs that would be incurred by implementing a piece of legislation. A document explaining this report, as well as related FAQ’s, is available here.

Resources for Sharing Information about the Lymphedema Treatment Act

To download an information packet appropriate for sharing ONLY with members of Congress and their staff, click here. (Please ensure that you thoroughly read and understand this document yourself before sharing it with congressional offices. If you have any questions, don’t hesitate to Contact Us. Remember that our Advocacy Handbook is full of helpful tips, such as talking points and FAQ’s. )

To download a facts sheet appropriate for sharing with the general public, click here. Additional ways in which you can help spread awareness are outlined on our Increasing Awareness page.

How you can help
#1 PRIORITY – Contact Your Members of Congress!
Six Easy Ways To Increase Awareness
Join Your State’s Grassroots Advocacy Team
Lymphedema Lobby Days in Washington, DC
Use Our Advocacy Handbook
Tell Your Lymphedema Story
Visit Our Cafe Press Store
Donate Financial Support
Our Newsletter
Sign up to receive updates on the progress of the bill and how you can help each step of the way. To view past issues click here.

Current Status
Check the status of the Lymphedema Treatment Act in Congress and view the list of cosponsors.”

fhttp://lymphedematreatmentact.org/about-the-bill/
Thanks for listening – thanks for helping… Sharon O’Hara

Featured Speaker:
John Gonsoulin MD, MPH PLLC
RSVP: 360-744-6685 or send an email to respiratorycare@harrisonmedical.org
Better Breathers Club helps people in our community cope with respiratory health issues through education & support. Patients and their families are always welcome.”
Hope to see you there!   Sharon

A Look at MRSA

Ignoring edema in your lower legs?
I did. Ask your doctor how to get rid of it – permanently…not just take water pills and forget it.

There is a reason edema develops for each person. Find out the cause, and, if possible – fix it. You do not want what I have.

Ask your partner – your doctor.
The latest recent culture of my open wound came back positive again – the second positive result since it began again in my lower left leg, October 2013..

“MRSA stands for methicillin-resistant Staphylococcus aureus. It causes a staph infection (pronounced “staff infection”) that is resistant to several common antibiotics. There are two types of infection. Hospital-associated MRSA happens to people in healthcare settings. Community-associated MRSA happens to people who have close skin-to-skin contact with others, such as athletes involved in football and wrestling.

Infection control is key to stopping MRSA in hospitals. To prevent community-associated MRSA

Practice good hygiene
Keep cuts and scrapes clean and covered with a bandage until healed
Avoid contact with other people’s wounds or bandages
Avoid sharing personal items, such as towels, washcloths, razors, or clothes
Wash soiled sheets, towels, and clothes in hot water with bleach and dry in a hot dryer

If a wound appears to be infected, see a health care provider. Treatments may include draining the infection and antibiotics.

NIH: National Institute of Allergy and Infectious Diseases”
http://www.nlm.nih.gov/medlineplus/mrsa.html
My opinion: (Test all patients and personnel in hospitals – stop the spread of MRSA)

Ignoring it – spreads it
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Harrison Medical Center Wound Care, Hyperbaric Medicine, Infusion Center
The understated low-slung buildings in the old Sheridan Village show a benign face to the wounded people who fight life and death wound care treatment inside.
Opening the door to the reception area brings a cheery “Hi! …Debbie knows your name.

Debbie Knows Your Name and smiles a welcome!

Debbie is usually the first introduction to the amazing friendly, competent and cheerful docs, nurses, technicians – all the great people working there. The patients reflect their environment as does the varied reading material offered. From deep sea training to bird reading …nothing ordinary about this place or the people in it – health care  or patients.
A minor breakthrough happened when I awoke a few mornings ago feeling nothing. An absence of pain in my leg – no pain anywhere….the apparent result of the new sulfur antibiotic for the escalating lymphedema/cellulitis/MRSA wounds in my left leg.
The pain gradually returned.

Debriding is done with a sharp razor after the wounds get surface Lidocaine to deaden the flesh. Most of the time it works.
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GOOD NEWS: I heard about an Ultrasonic Debridement machine – pain free that takes the place of a sharp razor and found a study on it in Ontario, Canada.
Efficacy Study of Ultrasound-Assisted Debridement to Influence Wound Healing (UltraHeal)
Principal Investigator: Christine A. Murphy, MClSc PhD(c) The Ottawa Hospital
Sponsor: Ottawa Hospital Research Institute
The start date was December 2013 – Estimated completion December 2014.
Official Title ICMJE A Randomized Controlled Trial to Investigate if Application of Low Frequency Ultrasound-assisted Debridement May Improve Healing and Infection Outcomes for the Person With Vasculopathy and Recalcitrant Wounds of the Lower Extremity
Brief Summary The UltraHeal Study is a randomized controlled trial to compare healing response of low frequency contact ultrasonic-assisted debridement in addition to best practice wound care to best practice wound care alone in a Vascular Surgery Clinic patient population with wounds of the lower extremity.
Detailed Description The study will also investigate the bacterial tissue burden and protease activity to provide further insight into the infection and inflammation aspects of healing barriers in a challenging population.

IF the study proves out, we should be thinking about getting a Ultrasound  machine that uses new technology to debriding wounds and helps healing…

Harrison Medical Center Foundation – how can we help you help us get that machine if the study is successful?

Thanks for listening… more later…
Sharon O’Hara, (familien1@comcast.net)

My hospice experiences have been an overwhelmingly positive, including my own mother’s outstanding care from one in Gig Harbor.  Mike’s experience happened in Maine – and makes me wonder how many other hospice patients around the country were and are caught in this latest stress fiasco for terminal patients and their family?

Greetings! Last month Mike MacDonald reached his six month Hospice Care and was ‘discharged.” Mike and his wife, Pat, were left hanging without medical insurance, no oxygen, medications, nothing to pay the doctor or hospital should he need one. The EFFORTS COPD community rallied to help.

Mike and Pat managed to work through their failed Hospice system, but the lingering question is will it happen to us when the time comes? Have patient safeguards been set into place?

One day it will be our turn for Hospice –  How is Kitsap County Hospice doing?  With Harrison’s hospice announcement recently in this newspaper, Kitsap County now has two for choice.
The Hospice patient and family deserve Hospice CARE – not a toss without medical coverage to sink or sink.
Following is Mike’s failed Hospice story update:
##############################
“Hello friends — A quickie note this time.

For those following my odyssey of hospice-care to no-care, I am pleased to post that all of my prior Medicare access has been totally restored as of June 18. My hospice had been “paused” on May 28 with the intention that I would re-enter Medicare on May 29 and return to hospice when I got a little sicker (my doctor’s crystal ball said that date was most likely to be July 23rd lol). We of course had the foul-up where my Medicare/CMS records weren’t properly updated resulting in my having no coverage (prescription, doctor, hospital or DME) for anything related to my lungs. I am still waiting on the wheelchair to be replaced.

Thanks again to all who wrote/called their congress reps, etc. I was touched and appreciative. We see over and over again what a warm community this is where so many of us rise to help each other often in spite of our own illnesses.

We had a visit yesterday from VNA of Southern Worcester County — a small VNA office based here in Webster, MA with a satellite office in Auburn, MA that provides palliative and hospice care services. As of yesterday I entered their palliative care program. My situation is not normal for them…they most typically step in following a hospital admission. In theory, they will evaluate me for re-entry into hospice services when the time is appropriate. In fact, the “in-take” nurse that was with me yesterday wanted to refer me for an evaluation right then but my wife wouldn’t hear of it (more on that below) and I think it’s premature anyway.

My regular VNA nurse — whom I haven’t met yet — will stop in today. Normally, there would be daily visits initially settling back to 3 times a week when appropriate. I’ve already expressed my wishes that we talk more like 2 times a week. They would be responsible for palliative care which is essentially “comfort” care but not quite so much as in hospice. That’s a little murky: while under hospice, drugs are often dispensed in a manner that’s not healthy over the long term with the theory being that the patient is dying already and so longer-term consequences aren’t as important. Under palliative care, they do care more about the longer-term consequences and there isn’t necessarily any assumption about death. In my case, the nurse and the doctor’s office will have to work that out but some of my drug dosages are probably already into the areas of unhealthy.

To my surprise, this *is* being covered under Medicare. CMS has tightened access to at-home services with the goal being of reducing in-home Medicare expenditures by 14% over the next 4 years. Learning that I seem to qualify for a host of in-home services comes as a very pleasant surprise. I can get an in-home health aid to help me bathe apparently — not that I want anyone to help me that way. I am eligible for occupational therapy which I believe for me means learning how to get around the home, how to conserve energy, etc. I don’t know that I need or want those services either but I’ll be open-minded. They also talked about music therapy to my surprise…I would be likely to use that.

We had entered this with the intention of hiring a “private duty nurse” paying out of pocket to lighten the load on my wife, Pat. I was a little concerned because whereas Pat was talking about 2 hours a week, I suspected 2 hours in-home care was probably more like 4 hours a week after factoring in travel, time talking to my doctor’s office, etc. I could easily see this running $1000 a month. No expense would be too high as far as Pat is concerned…she was really traumatized badly by the disaster with the last hospice organization (VNA Care Network which covers most of central and eastern Massachusetts). Pat actually objected initially when we talked about billing expressing a preference to pay this out of pocket and not involve Medicare at all for fear that they would screw things up so badly again. She’s really quite emotional about this — and understandably so — but I also think there is no danger at this point because we’re not signing away anything (whereas entry into hospice signs away access to care for the terminal illness to the hospice provider).

This does not bode well for when it’s time to go the hospice route. I don’t think Pat will go along with that again but for now I have to wait and cross that bridge when the time comes.

Physically, I’m not doing all that great though I think I am a little better the past couple of days. One of the ironic things about the May 28 discharge from hospice was that I was already sliding into an exacerbation on that date. At times, I’ve been fairly ill since then. Still, I don’t think I am near death. I wouldn’t be shocked if that changed 3 weeks from now but I also wouldn’t be shocked if I was writing the same thing 6 months from now. My doctor feels I am dying but admits that I’m tougher than he had thought. I am definitely progressing in the illness and not happy with how compromised I am in my ability to do much of anything.

By way of comparison, I have a friend who I started working with in 1989. We worked closely for 7 or 8 years and remained in touch since. He’s 54 years old and for 2 years has been battling an aggressive bone cancer. He’s been through 5 surgeries now including the replacement of his right pelvis with a bone from a cadaver. As he expressed to me a couple of days ago via email, he really shouldn’t be alive but he’s taking every day he can get and is planning on getting a tattoo next month. I’m not one for tats but good for him. When I think of my own illness, I have only to compare myself to people like him and realize that I’m still a pretty fortunate person…this could be so much worse. I have the means and the support system to deal with this; beyond that, I don’t have much control except for maintaining a positive attitude. For the most part, I do just that.

Thanks for listening and sorry for my blatant lie at the top of this note…I really *thought* it’d be brief.
Mike”
Michael MacDonald
:::Webster, MA

##################################################

Thanks for listening…. Sharon O’Hara, COPDer  -familien1@comcast.net

I have dozens of health care stories started – and lots of photos,  but Lymphedema  developed lesions in one leg and infected again.  Its taking a long time to heal, and  I can tell you that pain – the heavy duty stuff – is a life changer.  We’re looking at real life MRSA stuff.  Have I talked about MRSA yet?  Soon, then.

The following story is relevant  because it touched me with the dedication of the Suquamish Warriors attention to honor and duty and their sense of right for veterans and comrades – and themselves.  They don’t advertise their activities…a person has to know someone to find out what they’re doing.

xxxxxxxxxx
Recently, Mountain View Cemetery in Central Kitsap was the final scene of the Suquamish Warriors two-year wait for a fallen warrior’s headstone.
Nine Suquamish Warriors solemnly marched in line to the side of the grave of the warrior and his newly placed headstone and the Bugler’s haunting echo of Taps rippled over the quiet cemetery following the Honor Squad Leaders clipped orders – Ready! Aim! Fire!
The seven rifle carrying Warriors slowly raised their M4 rifles and shot as one twenty-one times. With each shot fired the circle slowly closed for the loved ones and friends of Max McGehee, a fallen Suquamish Warrior.
Each of the Nine Suquamish Warriors Honor Guard was presented with a beautiful hand knitted red and black neck scarf by Anita McGehee.  Her beautifully written Symbolism letter is printed here entirely.

Thanks for listening…

Sharon O’Hara

Photos by C. O’Hara

Respiratory Rally: A Patient Education Event!
The American Lung Association is hosting a patient education event in Seattle – only the second time we’ve had a major public event here for COPD and lung disease!
Saturday, May 3, 2014 – tomorrow!

Location: Aljoya Thornton Place – 450 NE 100th Street – Seattle WA 98125
Time: 10:00am to 3:00pm

Lunch provided
Oxygen available
Free valet parking
Family members welcome to attend. Free Alpha-1 Testing on site.
Register – www.respiratoryrally.com

Allison Moroni, Lung Health Manager
206-512-3294 or amoroni@alaw.org

Topics include – Lung Health 101 – COPD local research updates – Optimal nutrition for lung disease – Ways to stay fit

Speakers:
Dr. Kathleen Horan, Virginia Mason Medical Center
Dr. David Lewis, Group Health
Dr. Vincent Fan, UW/VA Hospital
ALA-MP CEO Renee Klein
Diane Angell, Alpha-1 patient
Katherine Figel, RD, Pacific Medical Centers
Margie Willis, Silver Sneakers

If anyone needs a ride, let me know.
Thanks for listening …. Sharon O’Hara

Greetings:  Kitsap Sun has a group of sharp, sometimes annoying, bloggers I admire most of the time for taking the time to teach and educate the rest of us.  Terry is one of them. 

A few days ago, several bloggers posted  in response to a KS health article and Terry posted a little of his story to another blogger – a hint of his Lymphoma experience and said he would give  more information privately.  I asked if I could post his story here, so everyone can read it and get the benefit of a person who has been there,  done that and survived.  Terry’s story should be shared.   Sharon

***********

Mantel Cell Lymphoma A survivors story

In 1999, when I was 48, years old, a strange transformation started in my body, large bulbous sacs over my eyes, chronic sore throat and sinusitis, and it just seemed I was always tired, constantly and ever tried.  My doctor told me not to worry, the sacs were just “lacteal swelling,” with sinusitis an effect; just cover the eyes with warm bags of water… and it would go away.

A year later I was diagnosed with Stage 4 Non-Hodgkin’s Lymphoma (NHL), a very rare form called “B-cell Mantle Cell Lymphoma,” a difficult to treat disease that (at that time) had a 10% survival rate, and no chance of a cure.

I immediately went into treatment, staying with my usual doctors at The Doctors Clinic in Bremerton, who quickly referred me to the Seattle Cancer Care Alliance (SCCA), an affiliation of UW medicine, Fred Hutchinson Cancer center, and Children’s hospital.  The SCCA was selected partly because of two senior fellows, Dr. Oliver Press, lead researcher in hematology (specifically, treatment of NHL) the other, Dr. Ajay Gopal, a pioneer in stem cell transplant; both on staff at SCCA. Both Dr. Press and Dr. Gopal were renowned worldwide as “leading edge” in developing new treatments for blood cancers.

My primary care doctor was Dr. John Pagel, who I still think of as the wizard whom saved my life.

At that time (2002) a new protocol was being investigated, one which involved extensive chemotherapy (HCVAD), total body irradiation (TBI), and stem cell transplant (SCT). The underlying idea was to kill the cancer cells with chemo, harvest stem cells from my blood, than kill any remaining cancers with TBI and a heavy dose of chemo. 

The radiation and “killer chemo” destroys not only the cancer cells, but also all other blood cells. Just like other forms of radiation poisoning, if left untreated, death is only a few days away. That’s the purpose of the Stem Cell Transplant. By putting the previously harvested stem cells back into my body, they cause the blood to re-grow healthy cells destroyed by chemo and TBI, and (hopefully) result in a full recovery of blood chemistry, free of cancer.

Two types of Stem Cell transplants were available, autologous, where the patient (me) provides the cells to be transplanted, and allogeneic, where those cells are donated from another person.  In my case, autologous was preferable, as it had less chance of rejection by my body, and lower incidence of Graft vs. Host Disease (GVHD), where foreign blood cells cause major skin irritation’s, from intense itching to open sores. Although I’ve never suffered GVHD, from talking with others, I understand it soon becomes unbearable. Thank goodness my cells sufficed.

Remember, this was a treatment preformed over a decade ago, and was experimental at the time. I understand that new protocols have been designed, especially in introducing radiation into the body, which may prevent the need of the Stem Cell Transplant.  Such treatment use antibodies which have been specially modified to find and attach themselves to the cancerous cells, avoiding healthy ones. These specially modified cells have small amounts of radiation attached to them, so they irradiate only the cancer cells, leaving other, non-cancerous cells healthy.

That’s a basic synopsis of what was done to cure me (yes, after eleven years, I’m willing to call it a cure) of my cancer, B-cell Mantle Cell Lymphoma.  Now I’ll proceed with a more personal report of my experiences of being treated at SCCA, and UW Medical Center. I also introduce my longtime girlfriend Julie, who died of brain cancer on Halloween, last year.

Perhaps at that time, my biggest worry was cost. I know that sounds silly, but at the time, prognosis for survival was maybe three years, I was uninsured, self-employed with limited savings, mostly retirement savings, that could never cover the cost of treatment. Enter the social worker staff at SCCA, who initiated a plan… spend all of my savings on treatments, then apply for Medicaid and Social Security “short term” disability benefits,  which I did.

So I blew through tens of thousands of dollars of savings, sold some property I owned, paid some more, then went onto Medicaid.  One of the most remarkable things of “paying the bills” myself was how well the hospital, my doctors and diagnostic centers worked with me on reducing costs. I would receive a bill for several thousands of dollars, and most, after one phone call, were reduced by 70%, sometimes even more.  When I finally qualified for Medicaid, financing the journey was no longer a concern. I still had to eke to pay household bills, but the small stipend from SSI, food stamps, and income from renting “the other half” of my and Julies duplex paid most of the bills. Some people I’ve talked with, those who choose to not use Medicaid or are otherwise insured, continued working through most of their treatments. All in all, in my opinion, the Medicaid system worked exactly as it should.

I’ve had people ask me: “should someone, such as you, have to lose their wealth to pay for healthcare” And I, in retrospect, respond: “it is always possible to rebuild wealth; it is never possible to recover from death… dumb question.” So here is my story.

The Chemo:

My chemo treatments used a protocol called Rituximab HCVAD, standing for Hyper Cyclophosphamide vincristine, and Dexamethasone . The official title is: “Rituximab-HCVAD Alternating Rituximab-Methotrexate-Cytarabine Versus Standard Rituximab-CHOP Every 21 Days for Patients With Newly Diagnosed High Risk Aggressive B-Cell Non-Hodgkin’s Lymphomas in Patients 60 Years Old or Younger.” Whew!, don’t you just love doctor speak.  A link to MD Andersons study is:  http://clinicaltrials.gov/show/NCT00290498. Note this study is no longer recruiting, making me think there are other, more effective treatments now available. This writing is just my experience, occurring over ten years ago.

My chemo was all administered at the UW Medical Center, in seven cycles, each cycle consisting of five to six days in the hospital receiving chemo, then two weeks resting at home.  I had no adverse effects; none of the nausea so often touted as a side effect of chemo, but did feel lethargic and very, very tired after the fourth or fifth treatment cycle.  During the entire time of receiving chemo, I was able to function well while in the hospital, most days, walking up and down five flights of stairs for exercise, caring for my own sanitation, and understanding the chemo procedures as they were done, then at home, doing the everyday “things” that needed done around the house. Julie was able to help, but we both were amazed how little our routines changed during these chemo treatments.

To me, the chemo was unremarkable, except that the swelling over my eyes disappeared after the first treatment cycle, and the drug Rituximab (I believe it was called Rutuxin) caused the strangest physical reaction…, which I could only describe as having my face torn apart, but without the pain! It felt like my jaws moved toward my eyes, pulling apart laterally from each other (as I said, it was strange) Anyway, after an injection of Ativan, an anti-anxiety drug… all was OK.  Two other long term effects of this chemo regime are constant neuropathy in my feet and hands, often presenting as sharp needlelike “jabs,” and a noticeable reduction in mental acuity, where confusion, short term memory loss, and dis-coordination hamper much of my ability to accomplish work effectively. This latter is well recognized, often called “Chemo Brain,” and it is real. I like to joke that I get the daily effect of drinking… without the expense of booze, or the malaise of a hangover!

The Stem Cell harvest

After half a year of chemo treatments, and much blood analysis, my stem cells were harvested from my blood. I can only describe this as one would envision kidney dialysis,  several hours, painlessly hooked up to a machine that sucked blood from my body,  processed that blood inside the machine, then replaced it back into me.  Again, except for boredom, rather unremarkable.

The Radiation

At the time of my treatment, two options existed for irradiating cancer cells. One Total Body Irradiation, exposed the entire body to radiation, the other, Radioimmunotheropy, where a radioactive antibody is designed and manufactured to specifically target only the cancerous cells. Once attached to the cancer, these antibodies’ deliver a lethal dose of radiation directly to that cancer, thereby saving healthy cells from radiation.

Unfortunately, after my chemo treatments, no cancer cells could be found in my blood, so the antibodys could not be designed for Radioimmunotheropy. .. meaning I had to get nuked with Total Body Irradiation (vs. this more conservative Radioimmunotheropy treatment) . This is the only time I have ever heard that *not* having cancer is a bad thing!

Anyway, Total Body Irradiation (TBI) was a process of several treatments, each where I stood for ten or so minutes in front of a device I could only call a big camera.  The “lens” of this machine shot out controlled streams of radiation which irradiated my entire body, presumable killing cancer… and everything else. That’s the downside of TBI, it kills your entire blood chemistry along with the cancer.  I actually remember a blood “lab” report, where normally blood counts would read 11.2, 8.1 4.7… this report *after* TBI read 0.0, 0,0.00….yes, it really does  kill you.

After several treatments of TBI, I was given a mega dose of chemo to kill any cancer cells that remained in my body, and sent home to marinate for a few days.

The Stem Cell Transplant (SCT)

Well, now’s the big day, so big in fact, it’s often referred to as “your second birthday.” Mine was October 31^st, 2002 (yes, my second birthday is Halloween… very appropriate for a heathen such as I, and BTW, Julies favorite day of the year)

Again, for something so important, it was rather unremarkable. It was really nothing more than a blood transfusion, a bag of my own stem cells delivered intravenously over an hour or so.  The only remarkable thing about the SCT is the stem cell solution is preserved with DMSO, which caused the most obnoxious sensation of “smell” once it enters the body; sort of like snorting bleach, but worse.

So, once again, after the transplant, I was told to drink a lot of water, piss out the bad stuff, go home and come back when the real effects of the SCT hit.

The real after effects of SCT

During the TBI and SCT phase of treatments, Julie and I were temporarily living in a small apartment in Seattle. This is because the SCCA felt it necessary to be near a treatment center and Port Orchard too far away. In retrospect, living near the hospital was a good thing.

I felt good for a few days post-transplant, Ok for another few, and kind of tired and lethargic for several days after that… then completely depleted, barely able to move; a week after TBI I literally was unable to move.

Julie drove me to the SCCA, where I passed out, and awoke in an ambulance driving me to the UW Medical Center; where I spent the next three weeks in an isolated room, free from any germs that could infect my immune system. It actually was quite cool,  a room where double doors isolated me from the outside world; a nurse would walk in, close the outside door; then clear the air, open the inside door, and walk into my room; repeating the process for egress.

I don’t remember much about the next three weeks, except for the little red morphine button, which I kept pressing with no result. I remember nurses telling me to get out of bed, clean myself up; walk around the room, get a little exercise… all to no avail. I just wanted to lie there, and frankly, hoping to die. Julie would come into this isolated room to console me, and I’d tell her to leave. It was not a good time.

During this phase of treatment, you are fed intravenously, and have no real food… surprisingly enough, it doesn’t matter.  You have a TV, you have visitors, but curiously enough, once awake and aware, all I wanted to do was go back to sleep.

As a nurse later told me: “you had a tough time of it,” and in retrospect, she was right.

But things got better. My blood counts recovered, my situational awareness improved, my health recovered; I could get up and walk around. After three weeks, I was released from the hospital, and went back to Julies and my apartment.

What I remember of the next month, while living in Seattle, was how cold I was.  This was December. Pre transplant I was short and fat, around 210 pounds; post recovery, short and skinny, about 150. I had lost a lot of fat, and it seemed where ever I went, the grocery store, the laundry, for walks around the blocks… I was constantly cold. That lasted for about half a year.

Julie and I moved back to our house after half a year in Seattle, a few months after my transplant. It was a long, slow process for recovery. I could work for half an hour, say mowing the grass, then become so tired I’d collapse, lying on the ground, not really aware and panting to catch my breath;  freaking out both Julie and my renters next door;  who, I can only imagine thought “he’s finally dying.”

This went on for well over two years, but slowly my health improved. About three years post-transplant, I had an epiphany… I wasn’t living a recovery… I was just waiting to die!

Here I was, newly healthy, cancer free, rebuilding my strength; and told by the experts my disease had no cure, my prognosis three to five years to live! I knew that wasn’t right.

That was eight years ago. I’m still alive, I’m still healthy. The worst effects remaining of my cancer is neuropathy, chronic fatigue and what I call “old man brain rot,” where… well, my brain just doesn’t work like it should, and I’m kind of stupid.

But I’m healthy. I wake up in the morning sucking air. I say a little prayer each day, I pray: “Thank you for my remission, I appreciate it. Please, until my relapse, guide me how best to help those worse off than I.” Amen.

See? It’s a prayer… in no way can It hurt.

I understand that now, a decade after my treatments,  B cell Mantle Cell Lymphoma victims have a 50% survival rate to five years, and I have to think, somehow, those prayers helped. 

Terry

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Thanks for listening… Sharon

The real story, told by Mike McDonald and re-printed here with permission. Mike has fought COPD for many years yet volunteered his webmaster skills to EFFORTS, emphysema.net – a COPD patient driven and run online support group I found over a decade ago. The unselfish work and giving of patients from around the world for a cause, united emphysema patients and helped us learn how to live and fight this disease and the lack of public interest at that time. EFFORTS and her past and future angels began the advocacy fight to survive, educate, and be educated.
Now Mike is in a new phase: Hospice.

“Thanks for so many kind emails both on and off list. This is a very interesting situation and I suspect that there are many misconceptions about what hospice is and isn’t. I thought I’d periodically write in and let people know. As a teaser, I’ll save for the last the fact of this lengthy email that they burst into my bedroom door today under the thought that I might not be coming down for breakfast (or lunch or whatever).

IMPORTANT: It’s clear that hospice experiences will vary wildly by state and somewhat by agency. In particular, the hospice here is now restricted to prescribing no more than 10 days’ worth of a drug at a time because the state was cracking down on unused meds. She said it had gone from 60 days to 30 then to 15 and now 10.

I had an initial visit from VNA Care Network & Hospice from a supervising practicing nurse last Friday:

– My own PCP will continue to act as supervising doc, which I gathered, was not the norm but I did appreciate it.

– The visit was mostly an initial pain consult as well a lot of paperwork to include the Do Not Resuscitate Order. The pain regimen at that point was a beginner’s dose of methadone, vicodin and oxycodone (percocet without the tylenol). She also added nuerontin on the theory that same of the pill was from sort of neuropathy and added another drug that acts as an NSAID (neuproxin? Similar sound.)

– She advised that for things like broken ankles, we should continue to use the hospital or whatever. For things lung related, we should call them and if in doubt, we should call them. For something like a collapsed lung, they would make a judgment call if I visit the hospital to get a tube in and she said it would largely be a judgment call based on whether they think I was dying in the next few weeks anyway.
– In a nutshell, if we call the hospital for something hospice doesn’t cover, we are stuck with the bill. Hospice’s job is to help me through the next whatever months in as much dignity and control as possible but it is not to make me better.

– She spent over an hour on the phone with her supervising doc, my PCP, my local pharmacy and their pharmacy. They cover “comfort” drugs and, except for unusual circumstances, they are hand delivered from a pharmacy in Lowell (nearly 90 mins away).

– She talked about some of the services that they provide including things like spiritual counseling, massages for both me , my caretaker and a music therapist (!), etc.

A driver showed up Friday night with a “starter” kit of emergency medicines including suppository kits, oral morphine, etc.

A nurse popped in on Sunday, took my blood pressure, etc., and wanted details about bowel habits that it never occurred to me to write down. To be honest, I don’t even HAVE a BM scale. (Okay, I’m kidding about that one.)

My regular nurse is an RN and she came in Monday. She –

– Upped the pain meds and delved into my bowel stuff again.
– She advised that Lincare would continue to provide my oxygen equipment with no changes except that billing would go to hospice.
– She thought my color looked good and noticed that my lungs sounded fairly well. She said that she did not think I’d be in the initial graduating class (< 6 mos) and reiterated that some lung patients come on 24 to 72 hours before passing (which always makes me think of Linda’s husband) but some go one, two and maybe a little more years.
– She agreed that if we could get the pain under control, I might get more air in and might be able to get out of the house.
– In the end, she upped the methadone, cut the pill schedule from every six hours to every 8 hours (much easier on my wife), cut the vicodin out and added tylenol. She also added a steroid that begins with a “d” but it not as problematic (hopefully) as prednisone.

My regular nurse came again on Wednesday. Unfortunately, the social worker came in at the same time.
– I was starting to develop some wheezing problems exacerbated (pun not intended) by all the hullabaloo and all the changes. She threw some more ativan (sp?) into the mix. She offered a hospital bed that I said I’d think about. A lot of the talking was to Pat and not me…I’m slowly becoming a spectator and that’s fine because I’m clearly not understanding everything.
– They made some changes and I agreed to the massage and the musician.

Wednesday night I was very ill with bad wheezing and stuff. I was up all night (after being warned the painkillers might dope me up…right!). I felt better some of yesterday (Thurs) afternoon and after the Halloween kids came though, a neighbor came by. People have been unsure of whether to be a burden or not and I said, “please! Please be a burden.” I feel good to have nice neighbors.

I started getting ill again overnight was in rough shape. My wife wanted to call the ambulance but I was trying to say that I don’t think that that is how this works. Any case, she called hospice but, unfortunately, hospice nurses all have “anonymous” on their cell phones. I have anonymous callers redirected to my voice mail. I was trying to nap in a bed while Pat stepped out two houses down. Lincare and the nurse picked that moment to pull in. I was drowsing and the bedroom door came crashing open. The poor nurse knew they had gotten calls and we weren’t answering the return calls. The episode really started me on a bad tailspin of breathing. It was clear that any exertion or upset was closing things up. Some liquid morphine absorbed through the mouth did a nice job of getting me about 50% open and the nurse and my wife left me for a long conversation. My instructions were to restrict myself to a chair or bed or whatever as much as possible for now.

There’s a little more but I am exhausted writing this much. I had meant to start writing some of this earlier in the week. For now, my breathing is better controlled and we have a better understanding of when to use what pills. I clearly scared the nurse today which embarrassed me a little but I suppose I’ll get over that. I have really given in to letting Pat (wife) take over as much as she can … I think she needs to do it for herself, I *know* that I am not really capable, but I am worried about her taking care of herself (once again reminding me of how Linda W went through this while she was so deathly ill herself).

Not sure where we go from here. We might get the VA involved…I’d like that but it may not be practical. I do think a hospital bed with an air mattress is in my future. We’ll see.

Again, thank all of you so much for your concern.”

God Bless you all, Mike. Someday the rest of us may have a turn at Hospice and it’s good to get a patient’s experience – not just the hype.
Moreover, special thanks for your spirit and volunteering to keep the EFFORTS advocacy patient boat afloat online all these years. Sharon
Thanks for listening …. Sharon O’Hara … familien1@comcast.net

UW Professor of Medicine, Ganesh Raghu, and a Principal Investigator on an Idiopathic Pulmonary Fibrosis Study Wins Grant

Ahhh… Dr. Raghu!  Urged by my mother to find out what else was wrong with my lungs about 2000, I agreed to visit the University of Washington Medical Center in Seattle to find out.  There I met the cheeriest, most enthusiastic and kind pulmonary medical folks I had ever met.  If I were dying, as I then believed, I would die with a smile and a grateful, “Doing great, thanks for asking!”

 I traveled to the University of Washington Medical Center in Seattle and met the cheery and inquisitive, completely exceptional Dr. Ganesh Raghu and his then sidekick, the irrepressible doc Dr. Raghu designated “Super Fellow,” Christopher H. Goss – a doc who looked beyond patient’s lungs and was instrumental in saving my life years later.  Those two and others helped bring this patient back into a positive and living mode – they found the Sarcoidosis evidence through an open lung biopsy – so my emphysema had a new friend occupying lungs and I did not know it.  Well…

Dr. Raghu and the other great researchers at the U do brilliant work to help humans around the world.  Medical research leads to cures and all manner of exciting stuff for people – today and in tomorrow’s world.

Xxxxxxxxxxxxxxxxxxxxxx

“UW researchers to test novel therapy for idiopathic pulmonary fibrosis

A grant from the NIH will test a promising surgical therapy for treating idiopathic pulmonary fibrosis (IPF), a disease that kills an estimated 100,000 people in the U.S. every year — typically within three to five years of diagnosis. Ganesh Raghu, pictured, UW professor of medicine in the Division of Pulmonary and Critical Care Medicine and a principal investigator on the study, is one of the world’s leading experts on IPF. In 1998, he and his colleagues discovered that 90 percent of patients with IPF had abnormal and asymptomatic acid gastroesophageal reflux. Initial investigations demonstrated to Raghu and co-investigator Carlos Pellegrini, chair of the Department of Surgery, that laparoscopic anti-reflux surgery (LARS) could be a promising treatment for patients with IPF. The NIH’s grant will test this hypothesis by supporting a phase II clinical trial, conducted with 60 volunteer patients from five clinical sites across the U.S., including UW Medicine. “

Congratulations, Dr. Raghu!  Rock on!

The old seaman  and first mate (me)  love you!

Thanks for listening…. Sharon O’Hara

familien1@comcast.net

Hi Guys … I’m back with joyous news…

Lung Health Screening – FREE

Silverdale, Mickelberry Road

Pharmacy Phone:   360-308-2118

Saturday, 2 November 2013

Start time:  10:00am

End time:  3:00pm

http://content.costco.com/Images/Content/misc/pdf/HealthWellnessClinicSchedule.pdf

“Oh, no!  I can’t breathe!  I should have gone for an early detection Spirometry test at Costco in Silverdale!”

Here it is – tomorrow at Silverdale’s Costco – FREE!

Thank you, Costco – for the early warning testing to avoid COPD (Chronic Obstructive Pulmonary Disease) – now I’m playing basketball without worry of smothering lungs!

Please – get checked.  You do not want COPD – ever.  I promise you…get checked tomorrow.

http://www.sciencedaily.com/releases/2013/04/130401111549.htm

Thanks for listening….  familien1@comcast.net

Stay tuned for more Northwoods – I’m a little late … familien1@comcast.net

Sharon O’Hara