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Thread: Jim's Update

  1. #181
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    Quote Originally Posted by Earth Mother 2 Angels View Post
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    ((((((Hugs to All))))))~

    Thank you agate, Steve, and funnylegs4 for your perspectives on the current health care bill.

    I've been dealing with the System for nearly 50 years, and I have chewed my nails down to the knuckles many times over proposed budget cuts by the state to all of the programs, which serve Jon and his peers. Reams of letters I wrote to our legislators and the media are in boxes in our garage. I don't know why I'm keeping them. Maybe as a testament to my life's work as an advocate.

    Block grants would utterly destroy Medicaid. When the money is gone, it's gone, and those in need will suffer and, yes, die. The states don't have access to more funding within the states' budgets. States will also have the option of providing less or none of the services. Medicaid is a federal program, and it needs that umbrella to survive.

    funnylegs4 ~ the System won't shrink and become more manageable. The bureaucracy will remain the same. With less funding, logically, less services will be provided to Medicaid recipients. There certainly will not be any streamlining of the bureaucracy.

    I'm still waiting for the authorization for Jon's PT to address his lymphedema. Jon is a palliative care patient. Uncontrolled lymphedema can be life threatening. But he can't even get approval for ONE visit. And that is now, before a new health care plan takes effect, so imagine what will happen if this bill passes.

    Pre-existing conditions are also off the table, or if insurance agencies agree to provide coverage to people with pre-existing conditions, the consumers will have to pay higher premiums.

    Unfortunately, politics is an integral part of our lives, particularly those with disabling conditions, because everything revolves around government support. Medicaid, Medicare, Social Security, the IHSS program, the Regional Center ~ all government agencies/organizations. Our health is extremely, inextricably related to politics.

    And the poor, disabled, and elderly are always the first to be discarded and devalued in the budget process. These are facts, based on my life experience.

    If this bill passes, Jon's IHSS program will be in jeopardy, along with all of his life-giving supplies (G Tube, trache, catheter, colostomy) and home health care. I am terrified every time this repeal and replace stuff comes up, because I fear for Jon's future.

    Naturally, my body responds to this kind of stress. I can't ignore these possibilities and not worry about them becoming reality. I have to be prepared.

    After almost a half century of battling the System and legislators with hidden agendas and no compassion or concern for the most vulnerable among us, I'm exhausted and fed up. I am tired of begging.

    Many organizations have expressed their opposition to this latest health care bill, like the AMA, March of Dimes, and other disease-specific organizations. So, I'm not alone in recognizing that nothing good will come of this bill if it passes.

    If we're the greatest country on Earth, why don't we have a health care system, which provides for all of our needs, and which doesn't discriminate against anyone?

    That shouldn't even be a question.



    Love & Light,



    Rose
    Thanks! The congress members who are for it say it does cover pre existing conditions but I don't know. Any bill must cover pre existing and value each precious life in order for me to approve it.
    Back on topic, is Jon better today? How's Jim?
    Mild Spastic Diplegia Cerebral Palsy and bad proprioception.
    My website for my original short films! http://cripvideoproductions.com/cripsnotcreeps.php

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  3. #182
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    Thinking about you guys! How's everyone doing? Always in my thoughts and prayers.

    Mary Grace

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  5. #183
    Distinguished Community Member Earth Mother 2 Angels's Avatar
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    ((((((Hugs to All)))))) ~

    At Jimís appointment with Dr. P this morning, she told him that the CAT scan reveals that the cancer is ďgrowing.Ē Not a lot, but enough to indicate that Navelbine has worn out its welcome. According to the lab, which tested his biopsy sample, the next chemo drug is Gemcitabine. He had his first infusion today.

    Jim was fine until a couple of hours after he came home. He has developed a ďgnarlyĒ headache, neck ache, and aching in his hands. Some of this is leftover pain from carrying those UPS boxes last week. He has had to take steroids 3 different times for that pain. Itís looking like heíll be taking them again tonight, unless the two Tylenol kick in pretty soon.

    His infusion nurse told Jim that this is a fairly gentle drug, and itís known to be relatively effective. We pray that this is true.

    Jim is scheduled for 5 infusions, one of which will occur on Jonís 48th birthday. He will have next week off. The infusion lasts 1/2 hour (as opposed to Navelbine, which took 10 minutes).

    His appointment today was at 7:45 a.m., which is really hard on both of us. He hasnít been sleeping well due to the residual pain from carrying those boxes. He needs the morning to sleep, but he was up at 4 a.m. and couldnít get back to sleep, knowing he had to shower and apply the numbing cream to his port one hour before infusion.

    I got to bed about 3:15 this morning, and Jim was in the shower by 6:30. I also had difficulty falling asleep, so I probably got about 2 1/2 hours of sleep.

    Jim requested a later appointment for his upcoming infusions, so heís now scheduled for 2 p.m. on Tuesdays. This is better for John too, since heís off work at that time, should he need to transport Jim. He transported Jim today thankfully, since Jim got the new drug. Jim was so tired, I worried about him driving.

    I noticed on one of Jimís signature sheets that two boxes were listed to indicate the purpose of his treatment: Cure and Palliative. Palliative is checked. This saddened me, as I so long for a cure. Other patients, who Jim has met during infusions, with Stage IV cancer, are nearly cured. Jim would be too, if he could tolerate immunotherapy (Opdivo). It just seems unfair that Jimís RA stands in the way of a cure. Not to mention the millions of other cancer patients, who have an autoimmune disorder precluding them from immunotherapy.

    Of course, we accept whatever we can get, and Jim is still robust, now weighs 165 lbs, has good color, and no cancer pain. His blood work today was very good; his white blood cells are in the normal range (YAY!), and his red blood cells, hemoglobin, and hematocrit all improved. All things considered, Jim is in pretty good shape given his diagnosis. We give abundant thanks for this blessing.

    JONATHANíS NEWS

    Jon has been peeing over his catheter, since his cath change on 9/29. Last night, his output into the drainage bag slowed, and this morning, I discovered that he was swimming in pee in his bed. I irrigated his catheter, which cleared any blockage and stimulated output.

    John visited this evening to turn Jon, while Jim remained in bed resting. John and I are a good team on our own, and we managed without any difficulties. I scrubbed the mattress cover, and now Jon is comfortable after a bath and fresh linens. I hope that the leaking is over, but heís been leaking for most of the year, so itís likely to never be over.

    Jon is not a candidate for other options to the indwelling catheter (surgical solutions, botox injections, or an implant to control output). So, we have to deal with what he can have.

    Of course, Jon is always delighted to see his ďbroí.Ē Johnís help means everything to us, and we are so very blessed to have him in our lives. I donít know what weíd do without him, quite frankly, because Jim simply cannot turn Jon any longer. We tried. Jim was doing okay with a simple turn and underpad change, but he canít hold Jon long enough for wound care, sheet change, and bathing.

    As John leaves, every single time, he says to us, ďIf you have an emergency, any time, day or night, call me. Otherwise, Iíll see you in a couple of days. Text me.Ē

    John is truly an Angel on Earth. He and I have so much in common, itís uncanny. He could definitely be my son, and to me he feels like my son. I love him like my sons. I treasure him like my sons.

    Trache Removal/Replace

    Jonís other looming issue is his trache. Jon's nurse couldnít get it out last week, and Jim tried unsuccessfully. We are concerned that he might have granulated tissue (granuloma) or scar tissue obstructing or wrapped around the trache in his throat. If this is the case, he will likely need to go to the hospital for an x-ray (I assume) to determine the problem, and possibly surgery to remove the tissue. This is tricky surgery, because there can be significant bleeding with granuloma (probably scar tissue too).

    The fabulous thoracic surgeon, who placed Jonís trache at Jonís ICU bedside in 2011, Dr. D, passed away from cancer a couple of years ago. He was such a wonderful man, and such a fine physician. God rest his beautiful soul. He told me in 2011 that Jon had scar tissue from his 2009 trache, and that he had to be very careful when creating the tracheostomy. We donít know any of the thoracic surgeons at the hospital now. Iím sure that they are all top notch, but this is scary to us, and Iíd feel more reassured if Dr. D was still here for Jon.

    Jon's nurse called Jon's PCP and Dr. H, a pulmonologist for advice and guidance. I hope that one or both of them return her calls. Dr. H took care of Jon twice in ICU, and heís also Jimís pulmonologist. While he isnít officially Jonís doctor, I feel that he would be willing to help us in this situation, knowing what our family is going through now. I doubt that our PCP will have a clue, as a general practitioner, but he is our primary doc, and he has to be included in the loop. Maybe he can refer us to Dr. H.

    Supplies

    On Tuesday, I faxed a list of Jonís supplies (about 20 crucial supplies needed for his care, from suctioning to catheter irrigation, colostomy, and wound care. We lost our supplier from the home health agency, and now we need to start over with a different vendor. First, we have to get Medi-Cal approval, then we have to hook up with the supplier. I donít know how long this process will take, but Iím sure it wonít happen quickly. And I know that I will have to make numerous follow up calls to get this new vendor in place, before we run out of Jonís supplies.

    ME

    In the midst of all of this, as well as the Las Vegas massacre and the passing of Tom Petty, Iím managing to maintain a fairly decent blood pressure. Iím walking every morning, watching my salt intake, and trying to let insignificant stressors slide. I count my blessings and strive to remember that things could be far worse than they are. Thatís not difficult, actually, when I look at the devastation in Puerto Rico and think about the victims of the shooting.

    THANK YOU

    So very much for your continuing love, prayers, support, and friendship to us. We are so grateful to you. Please know that we pray for every one of you daily.

    God Bless You ~

    Love & Light,

    Rose
    Mom to Jon, 47, (seizure disorder; Gtube; trache; colostomy; osteoporosis; hypothyroid; enlarged prostate; lymphedema, assorted mysteries) and Michael, 32, (intractable seizures; Gtube), who were born with an undiagnosed progressive neuromuscular disease and courageous spirits. Our Angel Michael received his wings in 2003 and now resides in Heaven. Our Angel Jon lives at home with me and Jim, the world's most wonderful dad.

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  7. #184
    Distinguished Community Member agate's Avatar
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    I'm sorry to find out that more chemo is ahead for Jim, and especially sorry that you saw that he was listed as getting "palliative" care rather than a "cure." The medical professionals are so often wrong that I'd say he could easily surprise everyone and be cured.

    You're doing what you can to keep several people comfortable, and I hope you're including yourself in that group.

    I guess we can only do the best we can--and in your case, rest as much as you can in between the various crises you are dealing with.
    MS diagnosed 1980. Avonex 2002-2005. Copaxone 6/07 - 5/10.
    Member of this MS board since 2001.

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  9. #185
    Distinguished Community Member Earth Mother 2 Angels's Avatar
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    ((((((agate)))))) ~

    Thank you so much.

    You are right. Currently Jim is astounding all of his physicians and nurses, and he is incredibly "healthy" for a Stage IV patient. And I do believe in defying the odds, as my sons have done that countless times.

    I do try to rest and be aware of my own needs, but it's a challenge for me, when I am the only one in our family, who is able to do everything. Jim helps me so much, more than he should, which is sometimes to his detriment. I beg him not to overdo, but he can't bare to see me exhausted and bent over in pain.

    I slept in for an hour the other morning, and Jim quietly crept in to check on me, because he was worried. Tom Petty's passing heightened our awareness that a heart attack can strike any time, and if you're alone, or your spouse thinks you're sleeping and doesn't check on you, that can be the difference between recovery and death. We know several people within our circle of friends, where this was the case, sadly.

    But it's really unsettling for us, since our sleep schedules are out of whack. Jim needed to sleep last night, while I worked the night shift, but when Jon had a seizure, I woke Jim, because I was concerned that the seizure would progress.

    We are kind of on the edge of our seats all of the time, checking on each other and on Jon. Waiting for a shoe to drop, praying that we can get through another day without a crisis.

    Taking care of myself is definitely not easy under these circumstances, but I am keenly aware of how important it is that I make the most effort to do so. That's why I walk every morning about 2 miles, watch my salt intake, meditate, pray, laugh and cry.

    It's all I can do. It's all I know how to do. I am endlessly treading water. And thinking about the future.

    Thank you for understanding and for your friendship, Joan.

    Love & Light,



    Rose
    Mom to Jon, 47, (seizure disorder; Gtube; trache; colostomy; osteoporosis; hypothyroid; enlarged prostate; lymphedema, assorted mysteries) and Michael, 32, (intractable seizures; Gtube), who were born with an undiagnosed progressive neuromuscular disease and courageous spirits. Our Angel Michael received his wings in 2003 and now resides in Heaven. Our Angel Jon lives at home with me and Jim, the world's most wonderful dad.

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  11. #186
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    Rose - I Am so sorry to hear about Jim. I know all too well about them wasting time, IF they had done the procedure Colonoscopy) Saturday instead of later, I would still probably have Cynthia with me, so I can relate. But this is about Jim. Should ya'll come to Phoenix, it is only about an hour from me and ANY assistance I can render, I have a master BR with two double beds, I can sleep on the couch, if you need a place, or ANYTHING else I can do to help just post it or PM me - I feel terrible for Jim, sounds like they are using him as a Guinea pig (Sorry) to test their drugs, to subject Jim to drugs they knew would not work was cruel - Call them on it - - I would add though honey works better then vinegar and you do need everyone on Yall,s side. and I will continue to pray for you. Know that I care, we have both been on this board for years and it has been a blessing.
    Sorry this is a little late but I have been dealing with my own issues but am Pretty sure I have a boarder coming in, so that will take a LOT of pressure off me and thank God I see my Psyc. Tuesday. Be Strong, I know it is hard - You already have your wings here on this earth, I am quite sure there will be a special place for you and you whole family when the Lord does call. Give my best to both Jim and Jon, take care and be safe. Push on the Doctors if they don't want to give you answers, Ask for a supervisor, still no answers, Kick it up another level, even ask to speak to the Patient Advocate and then the hospital Administrator, the squeaky wheel gets the Grease.
    Blessings
    Skypilot Steve

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  13. #187
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    Rose - Congressmen and women get GOLDEN health care. My thought is that they should grt what we get - I belive they would change their tune. Just my two cents worth.
    Blessings
    Skypilot Steve

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  15. #188
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    ((((((Steve)))))) ~

    Thank you so much for your prayers. You are so sweet to offer us accommodations in your home! We will not be traveling, likely ever, except to cross over to the Other Side. We truly appreciate your kindness.

    Jim was not used as a guinea pig. The protocol to receive immunotherapy is to fail two rounds of chemotherapy. Of course, since he has RA, Jim should never have had immunotherapy, and it caused him excruciating RA pain for 6 weeks, with lingering flares.

    All cancer patients in our hosptial's cancer center have biopsy samples sent to a lab, which specifically analyzes the sample to determine the most effective treatment. The last chemo drug and this new chemo drug were identified as suitable to treat Jim's cancer by this lab. This is to avoid "shot in the dark" care. If the cancer can be targeted for a certain kind of treatment, better results are expected.

    So far, Jim is beating the odds. According to his prognosis in April, Jim should be in hospice, close to the end stage. But he's robust, eating voraciously, has excellent vitals, no overt pain, and he is happy. We can't ask for more than that. And we know that we are truly blessed.

    I'm glad to hear that you have a boarder, and I will pray that this boarder will be a caring, responsible person.

    One more thing about Cynthia's tree ~ I suggested that you plant a garden around the tree. I found that a garden helped me express my love and let me feel like I was doing something to care for Michael, after he passed. Flowers blooming bring color, scent, hummingbirds, butterflies, and are soothing to the soul. You can create an environment, where you can commune with Cynthia, and I guarantee you that you will find healing there. A sacred place for your beloved.

    Prayers for strength, peace and comfort for you ~

    Love & Light,



    Rose
    Mom to Jon, 47, (seizure disorder; Gtube; trache; colostomy; osteoporosis; hypothyroid; enlarged prostate; lymphedema, assorted mysteries) and Michael, 32, (intractable seizures; Gtube), who were born with an undiagnosed progressive neuromuscular disease and courageous spirits. Our Angel Michael received his wings in 2003 and now resides in Heaven. Our Angel Jon lives at home with me and Jim, the world's most wonderful dad.

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