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Mantel Cell Lymphoma, Stem Cell Harvest and Transplant, Despair, Hope, Prayer, Love, Courage – Terry’s Story

Sunday, December 8th, 2013

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

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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 31st, 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


Hospice from a patient’s point of view

Saturday, November 2nd, 2013

Hospice from a patient’s point of view

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, a Principal Investigator on a Idiopathic Pulmonary Fibrosis Study Wins Grant

Friday, November 1st, 2013

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


Dr. Raghu.jpg“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


Lung Health Screening – FREE – Spirometry Test – Silverdale Costco – YES!

Friday, November 1st, 2013

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

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

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

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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  


Northwoods – Silverdale – Physical Rehabilitation – Good-by – Hello

Friday, April 12th, 2013

 

I’m telling my recent Northwoods story backwards, my outpatient, twice-weekly rehab ends at the Northwoods picturesque, characteristic salt-water rehab pool and into a new beginning.

Other than my first solo horse-packing trip into the Cascades and living through a host of learning experiences, I have seldom learned so much in one week as during my stay at Northwoods, a five star rehab center just north of Silverdale. 

I hope to progress as I should, working out at home and/or in a commercial pool.  The primary goal here is to rebuild the muscling around my arthritic bone on bone left hip in order to pedal a recumbent trike.

One of Northwoods rehab specialist, Jeff, actually got me RUNNING in the chest high water, coming down on my left foot without the old debilitating pain…muscle building safely in the water. 

Incidentally, the second time I ran in the water I felt so Tarzana that when Jeff asked me to sit on the water stool for a series of other exercises; I made a surprising running leap for it… and slammed into it or would have if I’d got that far. 

I began the jump too far out and the side effect was a gut wrenching, breathtaking laugh – so hard I ran out of air and had to focus hard to stop laughing.  COPD is not for sissies – nor are fancied, imagined, graceful gazelle leaps of joy that I could put weight on that left hip. 

Good Physical Therapists cause little moments of joy for the patients they guide into better fitness as we work into better health.

Northwoods has many good or great physical therapists – I am talking a little about some of the people and my latest experience as a patient in one of two Kitsap County five-star rehab centers.

For information, I didn’t qualify for insurance coverage since I had only been at Harrison overnight for observation, yet encouraged by Harrison’s sharp good-by, good luck doctor,   Dr. Mathew Coates the next day,  I decided to give it a couple days…and stayed over a week.17-IMG_2429

This is the entrance to the Red Barn dining room leading to access to the salty rehab pool.

Antiques – some early Kitsap County settler and his family plowed ground with this nifty tool and a couple good horses – or, maybe it is a thresher – a hay cutter. 


Note the wonderful old artifacts displayed everywhere in the “red barn “ – take a gander at  the two-woman saw on the wall above the staircase. 

Open for dining 13-IMG_2419

 

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These wonderful items are displayed on the way to the ladies changing room and the pool.  10-IMG_2413

On my way out, dinner guests coming in…hubby waiting for me to go home    Gorgeous quilts on the upper, left wall

Door to the pool

Roomy shower – kept spotless

                                                                                                                                                       

                                                                                                                                                     

The first dressing room/ladies room leading to a pool that I have seen decorated with real hand-worked framed quilt squares on the wall. 06-IMG_2406

Kristi, left, following Jeff’s exercise plan had me run as fast as I could to the end of the pool – stop and walk backwards to the other end and repeat the run…got me laughing when I spotted her ‘running’ alongside.  She moved through the water like a prancing parade horse – head bobbing, smooth and graceful while I plowed through the water using my arms pulling forward – feeling plow horsey running through the deliciously warm water.  Kristi asked why I was laughing.  Her first time running through water, she said, when I told her.  She has a wonderful spirit and I howled…and did not tell her Jeff saved his energy and did not run alongside when he instructed me to run. 

                                                                                                                                                                                                                                                                                                                                                                             

Patients need the lightness of spirit and humor with the serious work they do helping put us together again,…we’re sort of like HumptyDumpty and they help us get back together again and teach us how to apply our own glue.Kristi and Shayla 04-IMG_2394 01-IMG_2374

Thanks Shayla, (PT) and Kristi (PTA) – What a great job you do for us!

Thanks for listening … Sharon O’Hara

Part 1 of 4

 


Patient Safety, Rosemaling, Spinal Disk – Yes, Related Here

Sunday, March 31st, 2013

Tsaristic stuff happens, “we don’t live in a perfect world” a young nurse recently told me when I questioned the hospital discharge papers.  Used to transparency and kind consideration – I had expected better – much better.

The following was copied verbatim with permission of Thor Dahl.  The place is Florida – not here – but we need to be aware that Mr. Dahl and his wife are credible established people and business folks running the largest international online rosemaling “club’ offered….and where I read the following shocking post.  It was a reminder – patient, friends and family –  be aware – stuff happens.

28 March 2013 – The Global Rosemaling Club:

“Yesterday we went to  my surgeon for the third visit since my surgery last December 20th. I also had my first “commercial” haircut in over a year. But Joan has been nice trimming it several times. She used to do a great job! I also drove the car for the first time. Joan drove home. But I was happy to feel that I could handle the car after more than a year as a passenger.

 

The doctor didn’t give us the kind of news that I had hoped for. Each time I go there, they take a few x-rays to see how I’m healing. He said that due to the first hospital I went to let me out without knowing that I had 2 breaks in my back, the 6 extra months it took to find this out before the final surgery in a much better hospital, was too long to straighten out my old spine. So I’ll be living with an ugly hump and pain for the rest of my life. As well as not being able to lift more than 25 pounds while being very carefully without bending too much. If I was too ruff with my back, it just could brake again. He was very liberal on giving me prescriptions for pain medicine and indicated that I should not be afraid of taking them. From next Monday, I’ll start going to their “in house” physical treatment department. It will be from 2 to 3 times a week depending on what they think will be best for me. The doctor assured me that I could get anything I asked him for. I guess he felt sorry for the way this turned out for me.

 

He clearly admitted it was due to the poor treatment from my first hospital and added that this was not the first time they had failed with their surgery or diagnoses at that hospital. So he will hopefully be a good witness, because being ruined for the few years I have left, somebody should pay for not giving me the proper treatment. This will include the arthritis dr. that gave me the wrong medicine, which gave me internal bleeding and fainting. 

 

Even with all the above negative “news”, I feel a lot better despite it’s going to be hard to get used to having an ugly hump on my back!

 

However, I feel so badly for Joan who will be stuck with my part of many of my home duties which are way too heavy for her as well, because of all the arthritis problems she has of her own. At times she can hardly move. She often doesn’t sleep many hours in her bed and have to move between the sofa and her bed. Her hands are also swollen when she gets up in the morning.

Well, it’s “nice” to get old!”

(Thor Dahl)

http://www.rosemal.com/

the-global-rosemaling-club@yahoogroups.com

Joan & Thor

Dahl House Art & Rosemaling Center

16623 West River Rd., Caribee Shores

Inglis, Florida 34449   Ph:352-447-4178

 

Based in Seattle, Consumer’s Union, “Washington Advocates for Patient Safety” (WAPS) is a Washington group advocating for patient safety. http://www.washingtonadvocatesforpatientsafety.org/patient-safety/

The fact is almost sixty years ago the epidermal needle intended to help me give birth was jammed into a spine disk.  No physician treated me – they could not find anything wrong. 

Eventually, desperately, my parents took me to a recommended chiropractor and  I was given a pamphlet showing exercises.  He circled the ones he wanted me to do. 

He gave me hope and followed his instructions exactly.  He did not examine me, nor accept payment from my parents.

He gave me a life back – I worked through the pain. 

Through the years – every decade or so – I have followed the disintegration of the disk accidentally through x-rays given for other reasons.  A recent – on purpose x-ray showed the disk is gone. 

I lived through it without treatment and lived the physically active lifestyle I knew and loved.  COPD threw a different kind of curve in 1997.

Mistakes happen. 

Mistakes are sometimes turned around with the proper care and attention.  

Exercise gave me a life, and taught me to work through the pain.   

1-IMG_2483See your doctor.  Take a friend to be sure you both heard the same thing and be proactive in your own care. 

God Bless.  Happy Easter!

Thanks for listening… Sharon O’Hara


Lymph Notes Scholarship – National Lymphedema Network

Thursday, March 28th, 2013

Lymphedema patients NEED properly trained patient oriented, professional therapists in Kitsap County!  

Dr. Melissa Mercogliano of The Center for Orthopedic and Lymphatic Physical Therapy, in Port Orchard,  http://colpt.com/mam.html is the person who helped us a few years ago and taught my husband and me how to properly wrap my legs.  She is a fountain of patient information and goes out of her way to inform and educate.

Now…a Lymphedema Scholarship is available!  .  The need is great.  So – those interested – please apply!

Lymph Notes Scholarship – March 27, 2013

The National Lymphedema Network is proud to announce the establishment of the Lymph Notes Scholarship.

In the United States, access to treatment is still a critical factor for many lymphedema patients. Outside of major metropolitan areas, finding adequate treatment continues to be a major obstacle to care.

To help address the need for increases access to care, this annual scholarship, generously provided in honor of Lymph Notes, will cover up to $1,000 tuition for a healthcare professional to obtain specialty lymphedema training and certification.

Applicants are invited to submit an application online at:  http://tinyurl.com/lymphnotesscholarship  

The deadline for applications is July 15, 2013.   Questions regarding this scholarship program should be directed to the NLN office at 415-908-3681 or nln@lymphnet.org.”

Thanks for listening… Sharon O’Hara <familien1@comcast.net>


Boob Voyage Party … UPDATE

Thursday, March 28th, 2013

Boob Voyage Party … UPDATE

In answer to numerous comments and inquiries about breast reduction, Cindy responds,

“Do the boob job. You will not regret it. I had some problems but I do not regret it at all. I love my new body. The stress is gone from my neck and back. I am sure there are Drs in Gig Harbor or Tacoma. I had a friend recommend Mary Lee. I like recommendations. I would highly recommend Mary Lee and her wonderful staff.”   cindydillion@yahoo.com

http://pugetsoundblogs.com/copd-and-other-stuff/2013/03/24/boob-voyage-party/#axzz2Orz2SZxT

Thanks for listening… Sharon O’Hara <familien1@comcast.net>

 


A Tribute to Sara

Monday, March 25th, 2013

A Tribute to Sara…

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1-IMG_2362

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Thanks for listening …

Sharon O’Hara <familien1@comcast.net>


Boob Voyage Party

Sunday, March 24th, 2013
Cindy - before breast reduction

Cindy – before breast reduction

Boob Voyage Party

According to the American Society of Plastic Surgeons

Breast Reduction, Also known as, breast reduction surgery removes excess breast fat, glandular tissue and skin to achieve a breast size in proportion with your body and to alleviate the discomfort associated with overly large breasts.”

http://www.plasticsurgery.org/cosmetic-procedures/breast-augmentation.html

Some women are born with the genes to grow the unwieldy, heavy huge breasts that can work to make their lives challenging and think about surgery, but hesitate.  Sometimes hesitate for years, a lifetime.

Cindy Dillion, 62, finally had enough earlier this year and determined to find a plastic surgeon to remove the excess burden of her oversize breasts.

Cindy’s sister had breast reduction done 35 years ago.  When the doctor asked what bra size, she wanted to be she answered – her only criteria – make breasts smaller and point my nipples, “nipples pointed at the sky.”   Thirty-five years later, Cindy’s sister declares her nipples still “point at the sky.”

Cindy’s body was marked before surgery – sculpted according to her plastic surgeon artistic eye and examination of the patients shape.  No to the fancy ‘starburst’ nipple – just smaller, balanced and each boob should be  looking ahead.  No pointy nipples. 

Cindy lost five pounds off her breasts and another four pounds off her body when they liposuctioned the fat around her belly, shoulders and back.

In the six and a half weeks since the operation, she has lost twenty-one pounds and got more than she bargained for when her body rejected the stitches – she was allergic to them.  Ten days post operation she developed an opening, by the twelfth day the slight opening was open around the nipple and caused the drain hole to shift.  An infection followed, leading to extraordinary effort from her long time husband – the husband she now calls, “Rock Star.” 

The couple turned one of their empty nest bedrooms into a spotlessly clean medical wound changing room where twice a day Rock Star follows doctor’s orders, changing the wrapping, and helping his wife heal through his devoted attention to the wounds. 

Cindy cannot bring herself to look at her wounds, as her husband does, but noted she can now see her nipples for the first time in fifteen years AND noted her active support group had their “Boob Voyage” party and look forward to the next one – the   BraBeque Party!   (burning of the old painful reminder bras)

Her bra size at the time of the operation was 42 K and Cindy guesses she may drop back to the 36 D-bra size she has not seen in twenty-five years. 

Cindy’s Seattle doctor is surgeon Mary Lee Peters, M.D.  I was impressed upon learning the doctor did not ask what bra size Cindy wanted since, it seems to me,  a good plastic surgeon should be medically artistic enough to take the patient’s body size and frame, in consideration to make the judgment call for each individual.  Hip, hip – hooray!

Insurance did not cover the cost of Cindy’s Breast Reduction – their deductible was too high and the out of pocket cost was $13,000 .00 $9,000.00 for breasts and $4,000.00 for the liposuction[S1] . 


Cindy and Rock Star Hubby

Cindy healing into a new size

Cindy healing into a new size

 [S1]Cindy Dillion is a professional Realtor working out of the Coldwell Banker Bain office in Gig Harbor.  She will talk to anyone who has Support Garments until she healsNew curves comingquestions about one of the most underrated medical procedures I know – surgery to get relief from the pain and weight of oversize breasts.   

Thanks for listening… Sharon O’Hara <familien1@comcast.net>

to get relief from the pain and weight of oversize breasts.


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About This Blog

This is a patient to patient blog to exchange information and resources...from COPD (Chronic Obstructive Pulmonary Disease) to Arthritis to Cellulites to Sarcoidosis to Sleep Apnea to RLS to Psoriasis to Support Groups to Caregivers and all points in between. Written by Sharon O'Hara.

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