posted
NOTE: My LLMD's are no longer practicing medicine and have closed their practice as of 7.31.07.
I was confirmed positive for Lyme Disease. My first blood titer tested positive at the VA. It was followed up by LLMD Specialists, Dr. H and Dr. M in Colorado Springs by submitting my blood tests to IGENEX in Palo Alto, CA. THE DOCTORS ARE REPORTEDLY PERISHING FROM LYME DISEASE. Dr. M has had 3 heart attacks, per one of his nursing staff. Dr. H is declining also from the disease. They don't announce this, obviously, but having been their patient....I heard this from staff.
I had a Groshong catheter inserted to my heart for maximum aggressive treatment and was given a powerful regimen of many Abx....two IV using Rosephin (Ceftriaxone) AM and Zithromax (PM) admin'd by a home health nurse each day for almost a year. I was also given a host of potent PO Abx, including Flagyl, et al.
I suffered countless side effects and deteriorated continually.
I was told UPFRONT by one of the doctors that based on a thorough evaluation and blood work, it would we advisable to make my final arrangements. He'd fight hard to save me but it didn't "look good".
I'm on medicare and social security...and a widow. I can no longer afford expensive doctors who don't take medicare. I can't afford the pricey meds, either. Medicare Part D only pays the first 2,500 bucks, then you're on your own.
My doctors, who were totally committed to researching Lyme are severely declining, hence closing their practice. I'm also declining.
My vital signs have gone from 120/70 last year to 145/110 this year. Pulse is now 105 at rest. Oxygen saturation is inthe 80's and 70's. I'm now on oxygen. ALL IN ONE YEAR. That's called, "rapid decline".
I'm so weak now, I can barely walk.
I've had the most aggressive treatment, even home health nursing care daily.. I learned the home health staff were already making "bets" on when I'd die. Nice. Funny how word 'gets out'.
Some nurses would eat their own young, I think... What kind of people "bet" on a patient's death? Needless to say, I was so weak, I couldn't even administer my own infusions.
I lost 40 lbs because I was too weak to eat. I lived on Ensure liquids.
I'm seeking hospice care. I am now seeing a pain specialist who's easing the pain of the disease. I suffer. The pain is often excruciating.
I have a severe respiratory illness coinfection called, "Chlamydia Phneumoniae". This disease affects the heart and lungs primarily.
I am positive for this co-infection and the test results are in the "high" range.
I am deteriorating rapidly and seeking comfort or pallative or hospice care.
I can no longer fight the disease. I am too ill and weak to fight this disease. After a year of very aggressive fighting .... I've lost hope (and my savings).
I struggled one year ago with my husband's death. He died of pancreatic cancer. Once he died, I began seeing the LLMDs. Too late.
How do you find a doctor who will refer those of us who ARE dying to hospice?
BTW, for advanced Lyme disease, the heart muscle weakens or the patient undergoes respiratory distress. I am undergoing both. My autoimmune system can no longer fight back....the damage to major organs are too severe.
Posts: 47 | From New Mexico | Registered: Jun 2006
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Cobweb
Unregistered
posted
*****I was told UPFRONT by one of the doctors that based on a thorough evaluation and blood work, it would we advisable to make my final arrangements.*****
Did you follow his advice?
*****How do you find a doctor who will refer those of us who ARE dying to hospice?*****
Sounds like you already have.
If a doctor feels you have 6 months or less to live with no hope of recovery usually they refer you to hospice care.
6 months isn't a locked in time frame though-I had a child in hospice for 10 months before she died.
CaliforniaLyme
Frequent Contributor (5K+ posts)
Member # 7136
posted
You just need to call hospice where ever you are- but if you came HERE our local Lyme support group could try and get you to a Lyme doctor and get you better- I wish I could offer you a room in my home for that but my husband has already said no regarding that and other peopel- but where ever you are you just call the hospice people-
and if you have any fight left in you- fight!!!
Around here regular hospice commonly does a year pre- anticipated death I believe so it varies where you live-
also here there is a Buddhist hospice called Land of the Medicine Budhha where you can go and it is pretty in the redwoods. You can get into it if you qualify for regular hospice-
so where ever you are there may be similar places that are nicer than the usual hospice if you ask around!!! If I needd it this is where I would go- plus I think they try and save you through healing energy- and heck, that's not so bad being surrounded by lots of kindness-
Tara Home, a project of the Land of Medicine Buddha, is a residential home for the dying with around the clock hands-on care provided by a family of volunteer caregivers. Tara Home acts as the family for people who do not have family nearby to provide support and care while they are dying. Tara Home is currently housed in a cabin at the Land of Medicine Buddha in Soquel. Each client must be a part of the Hospice Caring Project of Santa Cruz before they are accepted into the program, as medical care is provided by Hospice. The dying person can be from any denomination and will be chosen based on need and established criteria.
Caregivers are volunteers who are willing to give 5-10 hours a week to the project, when assigned to a Tara Home patient. There are trainings for the volunteer caregivers and bi-weekly meetings to provide updates and support. Additional volunteers help with errands, shopping, laundry and cleaning. Tara Home encourages people of all denominations to participate in any way they can. The project provides care for people from throughout the Santa Cruz community.
If you would like to offer service as one of the volunteer caregivers, please contact: Lennie Kronisch at (831) 477-7750
Tara Home, a project of Land of Medicine Buddha, is a home for terminally ill individuals in their last few months of life. Around-the-clock care is provided by a ``family'' of trained volunteers. Tara Home is currently housed in a cozy cabin nestled in the redwoods at the Land of Medicine Buddha in Soquel, California.
Tara Home offers a place to live and compassionate care for those who have no family or friends to take care of them and/or cannot remain in their own homes. We accept applicants regardless of religious denomination and will make every effort to meet the individual's spiritual needs.
To be accepted into Tara Home, the resident must be a patient of Hospice Caring Project of Santa Cruz County (HCP) and meet their criteria for admission. HCP provides medical, nursing, social and spiritual services, as well as medical equipment and medications and will create a plan of care for the resident of Tara Home.
Volunteer caregivers are drawn from the community-at-large, and are able to offer 4-8 hours a week in service to the dying. They receive an initial training including hands-on care, emotional and spiritual needs of the terminally ill and an understanding of the dying process. Additional education is provided in meetings once or twice a month. Other volunteers are available for support services, such as errands, laundry, cleaning, massage and acupuncture.
ADMISSION POLICIES Prospective residents must abide by the following:
1. The resident must be a patient of HCP. Their criteria include a prognosis of six months or less: patients must be finished with aggressive treatments for their disease. HCP provides palliative care and symptom management. A referral to HCP can be made by calling their Admissions Department at (831)688-7684.
2. Tara Home can accept residents during the last three months of life; however, admission must take place before the patient is actively dying.
3. The resident and their family must abide by the general rules that apply to guests of Land of Medicine Buddha, such as, smoking is only permitted outside in designated areas.
4. Patients with violent behaviour, who are noncompliant or who would require a higher level of care than Tara Home volunteers can provide may not be suitable for admission.
-------------------- There is no wealth but life. -John Ruskin
All truth goes through 3 stages: first it is ridiculed: then it is violently opposed: finally it is accepted as self evident. - Schopenhauer Posts: 5639 | From Aptos CA USA | Registered: Apr 2005
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CaliforniaLyme
Frequent Contributor (5K+ posts)
Member # 7136
posted
p.s. I know many nursing home staff and nurses and doctors can be terrible- when the old ALS/Lyme group was active and a bunch of them were dying, this one man, Vince, he could no longer speak and the nurses were cruel to him and never came when he called them anymore- they were just going to let him die at any time when he needed help and talked about it in front of him. But he and his wife Mary had a touch system tapping which worked out letters and he wrote to her about what the nurses had said. She was furious on his behalf. The EXACT same thing happend to another dear, good man named Kevin who had two little girls- a toddler and a baby- one was named Summer. The nurses treated him with disdain and called hima burden on the system and told him he should go ahead and die because he was wasting bed space for people who needed it who could live.
The worst thing was that was his turning point- after the nurses said that in front of him, TO him in fact, he gave up and no longer tried treatment and just gave up and died very depressed about all humans.
One of the worst things baout those people dying beyond losing them, they were such good people, was the way they were often treated- the opposite of what one would THINK-
so I think hospice is SO important- you need to protect the dying not just from other things, but from horrible people who ought never to have gotten into those proffessiosn in the first place because there ARE those monsters walking around with no compassion- and the same nurses would talk to Kevin and Vinces wives normally and sweetly- and when they left the room- the masks were off-!!!
Hospice, I know hospice people. Every hospice worker I have known has come from a place of true love and compassion!!! MUCH better places to be than most nursing homes- I have had a couple of friends hwo did hospice- and my ex husbands best friend died in hospice and he appreciated it there greatly- he was surprised by how comfortable he was-- (he actually had a love affair with a hospice worker which cheered him up greatly as he was dying but was yup, technically unethical of her)
anyway, hospice is great if you need it but if you can rally at all let Lymies in New Mexico try & help you- I know if you lived in CA I would try & rally us around you- but I don't know New Mexico people at all, wish I did!!
Sincerely,
-------------------- There is no wealth but life. -John Ruskin
All truth goes through 3 stages: first it is ridiculed: then it is violently opposed: finally it is accepted as self evident. - Schopenhauer Posts: 5639 | From Aptos CA USA | Registered: Apr 2005
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quote:Originally posted by Cobweb: *****I was told UPFRONT by one of the doctors that based on a thorough evaluation and blood work, it would we advisable to make my final arrangements.*****
Did you follow his advice?
*****How do you find a doctor who will refer those of us who ARE dying to hospice?*****
Sounds like you already have.
I know catsmeow. We've been phone buddies for over a year now. The dr who told her that is one of the LLMD's.....who are no longer working, so she can't get the hospice orders from him.
Other drs have told her Lyme is not terminal. I think that is the main problem. If she could get an order, then maybe she would get better care at least for the pain.
Actually, she is in Colorado now. She moved to CO to be near her LLMD's!
Hi Susan!
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96239 | From Texas | Registered: Feb 2001
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Cobweb
Unregistered
posted
I sometimes wish I could surrender to Hospice care-I suppose this issue links back to whether Lyme is considered a terminal illness.
I don't understand why the doctor who told her to put her affairs in order didn't suggest Hospice then, before he retired. How long ago was this?
I didn't realize Hospice could be a self referrel.
posted
[QUOTE]Originally posted by Cobweb: I don't understand why the doctor who told her to put her affairs in order didn't suggest Hospice then, before he retired. How long ago was this? I think he told her that on her first visit for lyme treatment ....like a year ago
I didn't realize Hospice could be a self referrel. That's the problem. I don't think it is.
Sorry to be answering for her, but she may not be back for quite awhile and I'd like to get her some help and/or ideas.
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96239 | From Texas | Registered: Feb 2001
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sixgoofykids
Honored Contributor (10K+ posts)
Member # 11141
posted
Little Sisters of the Poor run nursing homes around the country for those who can't afford care.
I knew the sisters at the home in Indy and I always told them that I wanted to live there when I was old ... they told me I couldn't because I wasn't poor ... anyway, they took GREAT care of their patients. You would never have known it was a home for the poor ... my rich grandmother's home was no nicer.
-------------------- sixgoofykids.blogspot.com Posts: 13449 | From Ohio | Registered: Feb 2007
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lymednva
Frequent Contributor (1K+ posts)
Member # 9098
posted
I have a friend who works for Capital Hospice. I'll copy and send this message to her for her input. I'll post what she tells me.
-------------------- Lymednva Posts: 2407 | From over the river and through the woods | Registered: Apr 2006
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-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96239 | From Texas | Registered: Feb 2001
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Boomerang
Frequent Contributor (1K+ posts)
Member # 7979
posted
Say what? Why on earth would you give up on fighting? Yes, Lyme is a horrible, horrible disease but it is "fixable". You can get better.
Forget about hospice!! Just concentrate on getting better! Stay positive.
Posts: 1366 | From Southeast | Registered: Sep 2005
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Dawn in VA
Frequent Contributor (1K+ posts)
Member # 9693
posted
Just wanted to chime in with a hug for you. I am sorry to hear about everything you've dealt with over the last year.
Is there anyone on this board that lives near you?
-------------------- (The ole disclaimer: I'm not a doctor.) Posts: 1349 | From VA | Registered: Jul 2006
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bettyg
Unregistered
posted
susan, so sorry to read all the above happenings with you!
iowa has some wonderful hospice care programs here....1 in the city i live.
my husband's ex-wife lived there on title 19 the last 3-4 months of her life. she got excellent care.
then someone ? put a lien on her estate for $70,000 for the meds given to her for chemo/radiation she received. that was 5 years ago, and her estate still isn't settled although all she had was a small mobile home!!
i did a search in my newbie links if there was anything in there on hospice, but found NOTHING sorry to say.
best wishes to you susan!
hospice also has a program called FIVE WISHES; if you have a local hospice near you, ask them to send you this important booklet having thigns just the way YOU want them to be.
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posted
I did what my LLMD said: I selected my casket, flower arrangement, et al and paid for everything. My body will be flown back to Fort Bliss, TX to be laid to rest along side my husband, who died a year ago.
There does come a point when you've taken so many drugs, (in my case, infusions twice per day) and tons of other meds .....constant severe herxing and physical pain.....and all while trying to deal with the severe depression of losing my beloved husband to cancer.
One day, I'm holding my dying husband in my arms and watching his life ebb away; the next, I'm told to plan for my own funeral.
I did.
I'm still alive but my major organs are shutting down. My heart is struggling to pump blood out; I'm living alone and too weak to cook or even get dressed. I survive mostly on milk, which is delivered to my door once a week.
I rarely ever leave my house except to go to the doctor. My meds are normally mailed or shipped to me.
People do have a breaking point. When you're too weak to cook a basic meal or get dresed; hurt so badly you can barely sleep in order to escape the misery and see your own LLMD's dying...well, it's a bit tough to "fight".
Fight what? My doctors are dying and there's none in Colorado Springs now. I'm alone.
GOOD NEWS, though! I began to see a pain specialist who's completely covered my symptoms mnanagement with various meds...one which provides me with increased stamina and energy (a med originally designed for narcolepsy patients); potent pain medication to manage the pain; a fentanyl patch to help stabilize the pain; medication to help me sleep more soundly at night and an antidepressent. I struggled greatly with depression when my husband passed away. Even a year later, I miss him desperately.
God has blessed me with some wonderful and kind friends where I live. They stop over and bring a hot meal from their dinner table sometimes or drop by the store and pick up things I need.
I have a handyman and a housekeeper who help keep the home running smoothly. I was blessed with the financial provisions I need and with my pain being managed now, I'm able to sleep more and cope better mentally. I'm still very weak, though.
My vitals are getting pretty seriously bad and my oxygen levels and dropping. I have a co infection called "Chlamydia Pneumoniae" and only know that it's chronic and damages the heart and lungs.
Considering that I've had massive doses of abxs via a heart catheter and P O meds by mouth galore, it appears that they didn't Dx the problem in time. Too much damage to the organs and no way to restore my heart and lungs.
I'm mainly on pallative (comfort) care, to ease the suffering and allow me to have dignity, instead of writhing in pain constantly.
My friends and neighbors know what's going on and are being very kind and supportive. That helps emotionally.
All I want now is "quality" of life....not so much quantity.
Posts: 47 | From New Mexico | Registered: Jun 2006
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bettyg
Unregistered
posted
Susan, i'm glad you have had the time to do your soul-searching of deciding how you want to live the rest of your life.
in our area, hospice comes to the home too for 24/7 service as well! how about your area?
you are facing the end of life face to face...
yesterday, i got a total shock when my eye specialist told me i have EARLY diabetes reinopathy .... meaning loss of vision and/or blindness due to my high blood sugars! i was totally shocked, and have much to learn about that.
did ask her if i got my blood sugars back DOWN TO NORMAL AND KEPT THEM THERE, will that make any difference? YES it can.
no comparison to what you have stated above, but it was my reality check of saying, DEAL WITH THIS AS YOU HAVE YOUR LYME, APNEA, HEART PROBLEMS, ETC.
live every day to the fullest, and thank god daily for what he has given me/hubby for the last 33 years on oct. 5.
susan,
have you ever seen or read the sympathy poem collection i put on here?
you can do a search for it under my no. 6147 ... there are some marvelous ones there.
what comes to me to mind for you are these:
I'M FREE,
IF TOMORROW NEVER COMES
MY FIRST CHRISTMAS IN HEAVEN
SOME WONDERFUL "MOM" POEMS ARE IN THERE....
later for now, if you can't find, send me a pm, and i'll send them another way to you ok!!
may god bless you susan today and for the rest of your life. glad you found a pain mgmt. doc.
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posted
Susan, I'm glad you're finally getting some help with the pain! Maybe things will be looking up for you soon and you'll have the strength to carry on.
Hugs to you today! Call me when you need me!
Gayle
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96239 | From Texas | Registered: Feb 2001
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lymednva
Frequent Contributor (1K+ posts)
Member # 9098
posted
Haven't heard back from my friend (not sure she checks email on weekdays) but here is a great link to Hospice in Colorado Springs.
Look in the FAQ's and they will help you get the referral you want., You can also choose to leave the care, if your condition improves. There's a number you can call. Check it out!
-------------------- Lymednva Posts: 2407 | From over the river and through the woods | Registered: Apr 2006
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heiwalove
Frequent Contributor (1K+ posts)
Member # 6467
posted
i just wanted to send you my love and support. i'm heartened to hear of your pain/symptom management care, and the good, caring folks you have around you. sometimes, there is not much use in continuing to 'fight,' whatever that means (personally, i don't like the battle metaphors so common in referencing serious illness, anyway). i, too, will always cast my vote for quality over quantity.
i hope you find comfort, peace, love, and joy in the time you have left here.
merrygirl
Frequent Contributor (1K+ posts)
Member # 12041
posted
This post was an extremely emotional one to read. I have been posting about my worries of GI issues etc. Then you read what you are going through and it makes me think.
I hope you find the comfort for your last days. I wish you to be surrounded by people who you care for.
Your Husband will be waiting to greet you and you will travel together to peace, hapiness, health and love.
May god bless you and make you comfortable and happy in the final moments.
I believe in quality over quantity as well. People should not have to suffer so badly.
Truthfinder
Frequent Contributor (1K+ posts)
Member # 8512
posted
Hi, Susan -
I sent you a PM a few days ago.......
I'm VERY happy to hear the good news about your pain management!!!
Have you already tried having lunch meals delivered to you during the week through the Meals on Wheels program?
Like you, I struggled to cook anything or prepare simple meals, and then I had an accident this summer that made this almost impossible...... Since I was already disabled and on Medicare, I was able to take advantage of the Meals on Wheels program here and it was the smartest thing I ever did. Food became something I did not have to worry about, and took a lot of pressure off my friends because I needed very little from the grocery store.
Usually, there was enough food delivered at lunch that I had some items left over for dinner. Not only did they deliver it to my door, but I left my door unlocked, and they delivered it right to my table if I happened to be in another part of the house. And all for $3.50 per meal. That's extremely reasonable. And in my case, the food was actually quite good!
You simply cannot produce strength and energy without adequate food.
I've already sent you a PM - please let me know if there is anything I can do to help, Susan. My prayers are with you.
Tracy
-------------------- Tracy .... Prayers for the Lyme Community - every day at 6 p.m. Pacific Time and 9 p.m. Eastern Time � just take a few moments to say a prayer wherever you are�. Posts: 2966 | From Colorado | Registered: Dec 2005
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lymednva
Frequent Contributor (1K+ posts)
Member # 9098
posted
Susan,
If you are still interested I got a response from my friend today. I will copy and paste it here.
I apologize for the all caps. That's how it was received and I am terrible typist, so I don't want to have to type it all in again.
I wish you all the best and hope you are doing better now and not considering this. If you want more info let me know here and I'll ask my friend.
I WOULD ASSUME THE TWO DOCTORS SENT PATIENT RECORDS TO ANOTHER PHYSICIAN TO CARRY ON FOR THEM. OR, SHE CAN GO TO A LOCAL HOSPITAL AND A HOSPITALIST COULD REFER TO A HOSPICE OR PALLIATIVE CARE PHYSICIAN. SHE COULD BE MANAGED BY THE HOSPICE PHYSICIAN AFTER THE REFERRAL. I DO NOT KNOW IF THAT HELPS OR NOT. IF NOT, WRITE AGAIN.
-------------------- Lymednva Posts: 2407 | From over the river and through the woods | Registered: Apr 2006
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feelfit
Frequent Contributor (1K+ posts)
Member # 12770
posted
Susan,
All that I can offer you are loving thoughts and a powerful prayer. God bless you.
You are an amazing woman.
Posts: 3975 | From usa | Registered: Aug 2007
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kelmo
Frequent Contributor (1K+ posts)
Member # 8797
posted
With all the losses lately, I have been thinking about this woman. Any word from her?
Posts: 2903 | From AZ | Registered: Feb 2006
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