I Hate Dialysis Message Board
Dialysis Discussion => Dialysis: General Discussion => Topic started by: kickingandscreaming on July 23, 2019, 07:27:45 PM
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I've been in hospital, feeling utterly desolate deliberating how I want to die. I don't want to die of a heart attack and I don't want to die during a cardiac ablation or during open heart surgery to repair my broken mitral valve. I feel so hopeless and alone with this decision. At least in hospice I can exercse some control on how I die. What a very sad state I'm in.
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I am so sorry kickingandscreaming. I really wish there was more I could say, but I've learned that sometimes all we can offer is to be there to listen, and I am sure there are many here who are willing to serve that use for you. You are a valued member of this community and I know we all wish the best for you. On many occasions you have offered valued advice and support to many, and I just wish we could do the same for you.
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I am so sorry. You are showing so much courage.
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I am sorry you are having to go through all of the troubles. All any of us can do is offer to listen if you need to vent. I'm up at all hours of the night because of insomnia. Please let us hear from you.
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It breaks my heart to see someone going through so much where stay want to truly die. This too shall pass. :boxing;
Kickingandscreaming take it one day at a time. You will get through this. It seems harder when you are going through it alone but you will get through it. This is the downside of dialysis but don't let dialysis win. You have to go at dialysis kicking and screaming until you put it back in its place.
You started off right by expressing how you are feeling; a start to healing.
Hang in there and take it one day at a time and you will feel better.
:cuddle;
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Thank you all for your kind words. I'm still struggllng and working hard to deal with all this.
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I feel very sad thinking about your situation. I wish I could make your world happy and carefree again.
I know the value of just venting, knowing that there are people out there all too happy to listen, who will not judge and who will not try to solve all of your problems. Sometimes there just are no answers. So, it is with some trepidation that I offer one suggestion. Have you looked into palliative care? I confess to not knowing much about it; I don't know how one accesses it as perhaps it is regulated/licensed by each state separately. I don't know how it is paid for. I was speaking to a lady at the pool this morning, and she has a myriad of health problems. While she has family around, they don't really seem to take much notice of her, so she is pretty much on her own. She mentioned maybe speaking to her doctor(s) about palliative care, and as soon as she said those words, I thought of you.
We all care about you and will do whatever you think we might do for you to make your life a bit easier. I'm just sorry that these words are having to be "said" on a computer screen.
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I have made contact with a palliative care doctor. Hospice s ONE of my options (besides staying alive). It's my ace in a hole and I'm gratfeful it's there. In the meantime, it's one foot after the other.
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Keep on keeping on! :thumbup;
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I have made contact with a palliative care doctor. Hospice s ONE of my options (besides staying alive). It's my ace in a hole and I'm gratfeful it's there. In the meantime, it's one foot after the other.
I'm sure we'd all be interested in what the palliative care doctor has to say. :grouphug;
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I haven't got the energy now to recall and report on the conversation. But it was a good one. I felt quite good about how she thinks and about how she described the process.
On a more immediate note, I just had a Nuclear stress test to view the heart and blockages. The test was pretty unpleasant, but the result is terrific. NO BLOCKAGES, LOOKS PERFECT. So that is great to know. I still have A fib and a bad heart valve to deal with, ether of which could kill me or make my life Hell. But one down. That's a relief. I figured, with my luck my arteries would be blocked to the brink. Fortunately. my healthy lifestyle did pay off. The A fib is a congenital defect and the valve was damaged by my kidneys and old age.
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I'm very glad you had a good conversation, and I'm relieved to hear that you got some good news at last!
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That is terrific news! Glad you had the conversation and you heard positive news.
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Very sorry to read of this awful situation, k&s. On the other hand, glad to read of no blockages. Here is hoping that you can stay stable for as long as you want and feel at peace otherwise. Have a whole team rooting for you here. Prayers and thoughts! :grouphug;
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October 2016 I suffered a major heart attack it left me with a injection fraction of 20%. The normal injection fraction is close to 60%. I laid in bed and heard the doctors discussing the fact I was probably going to die. The next day I had a emergency angioplasty and was still in bad shape. I was sent to another hospital for a high risk angioplasty, I was discharged at the end of the week. On Monday next week I went back to my normal dialysis clinic after treatment I walked to my car and could not breathe, called cardiologist and his assistant told me to go to the medical group urgent care center. Was there for 9 hours when I had my 4 th episode of not being able to breathe. A nurse was in my room at the time and started screaming I was in vtach. Ambulance back to hospital where it was determined I needed to go to another hospital ambulance ride again to hospital electro physiologist was at. Had 7.5 hour operation to implant icd and abalation. It took a year before I began to feel good. Today there are things I still can’t do but all in all I am happy. I too was almost ready to pack it in but then I realized I am a Dialysys patient and if I didn’t like how I ended up I would just stop Dialysys. Well while not perfect my recovery has returned enough functionality that my life is worth living, by the way not only vtach but afib was involved. Nether has bothered me in the last 2 years.
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I don't really know anything about valves. My by-pass was vessala only.
But I've heard valves are replaced daily. Some actually done through the veins, not even splitting the chest. Wow.
A-fib, one of the Nurses in Wife's Nursing Home had to take a trip to the ER a few months ago. Seems she has a history of A-fib and her rhythm was getting seriously out of sync. A bit of adjustment in her mes and she was back at worok the next week end. She works weekend doubles Sat AND Sun.
Keeping that positive attitude that you have shown us for so long has to be the key. Learning more about your conditions and how your behaviour, diet, fluids, everything that can have an effect, makeing those adjustments in order to minimize the effects of the condition.
You are far stronger than you think.
Take Care,
Charlie B53
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kickingandscreaming, I’ve been following your posts and have no advice. But I’m glad the heart attack didn’t get you. I hope you find comfort in your days ahead whatever path you choose for the near future.
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Kicking and Screaming, after heart attack and vtach issues I was slated for release and the hospital sent some one to see if I could climb a set of stairs. I realized I could walk about a 100 feet then I would need to sit for a few minutes to get my breath back. Now in real life there are not chairs every 100 feet. So I bought a rolling walker that had a seat. Go 100 feet lock walker sit, wait a couple of minutes, get up go another 100 feet. As time went on I began to go father. I still have some limitations. But I have adapted so I still do what I need to. I was tempted to just give up, when I could not walk the 8 feet from my hospital bed to the toilet with out spending 10 minutes getting my breath back. It was probably the exertion invoking vtach. So looking back at the work involved in recovery it clearly was worth the effort. Not only am I still alive but am looking forward for the future. I know I will not live for ever and if I go soon so be it. I do know every day I live is one more day at&t pays be to be alive. Since they changed the rules and took half my pension, I enjoy knowing I am a net debit on their corporate books.
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I am now known as a "multi-morbid" patient. I am sick on multiple levels-- under it all is my bad kidneys, then there's my heart which has at least 4 problems: Heart Block (where my pulse goes way low and necessitated getting a pacemaker. Then there's A fib that can stirike at any time and can cause a clot/stroke. This heart attack I just had was caused by A fib. Then there's the queen of my heart issuses, the regurgitating mitral valve which could only be repaired by open heart surgery (which would probably kill me at this age, etc.
Charlie- this is a minimally invasive version of valve repair, but I am not a candidate for it since my kiidneys have deposited calcium on the valve, making it irreparable except with open heart surgery.
And now, on top of everythig else, my calves (on both legs) are swollen, engorged, hard as rocks, and in horrible pain. I had them looked at but basically nothing was done except antibiotics. but it's not an infection. to walk is to feel agony. I live totally alone so I have to walk even tho it is nightmarishly painful to do so.
So it is this WHOLE that drives me to consider going into hospice to put myself out of misery. Add to this that I only have one familh memeber ( a niece in a distant state), no children, not even a dog anymore. I really have very little to live for. And when you add to that my country, America, has been under constant assault by the delusional, malignat narcissist in the White House.-- there's a big part of me that is ready to chuck ip.
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I personally think that the whole "positive attitude will help you live longer" is a load of old bollocks. There is no evidence showing this is true. When one has a medical condition (kidney failure) that cascades into multiple maladies, some of which are physically painful to the point of making every day life just excruciating, it is no wonder that you, k&s, feel the way you do. You really are caught between the proverbial rock and hard place.
My husband's elderly father has had A-fib for many years and has been on many meds whose effectiveness has dwindled as time went on. He's had that procedure where a nerve was cut, and surprisingly it did not work as well as his doctor had expected. So I know that A-fib is not easy to treat, and the idea that it can strike and kill you at any time is a hard thing to live with.
Let's say that you did decide to have the open heart surgery to repair the mitral valve, and let's say that it was successful. How much would that repair improve your life? Would it improve your life to the point where you might think it would be worth the risk?
What in the world could be wrong with your calves? I'm a bit disappointed that your doctor put you on antibiotics; this sounds rather dismissive to me. "Oh, I don't know what this is, so I'll just throw some antibiotics at it and hope for the best." That is probably an unfair assessment by me, but that's my gut reaction. I hope I'm wrong.
If it weren't for my kidneys and the expense of treatment, I'd seriously consider moving to another country. I've considered going back to the UK, but they're going down the same road (maybe even a much rockier one) as we are.
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MM- I spent 3 days in the hospital being tested about my legs. They did multiple blood and skin cultures, assuming it was a bacterium. And I was on a series of antibiotic based on that assumption and the symptoms at the time--red, hot, swollen. On some level they've improved: less red, less bumpy and FAR less painful but still VERY painful. Very hard to get around and since I'm alone, I have to get around on my own steam. This new wrinkle is mystifying, since it had seemed to be improving and then BAM it's back in a slightly different form. I have now seen 2 hospitals, one urgent care, and one PCP and I'm still in this boat. I put in a call for a referral to a rheumatologist thinking it might be vasculitis and not cellulitis. Still waiting for some real helpl
I think positive thinking (altho it feels good to true believers) is a crock when it comes to serious health issues. It doesn't hurt, but may keep a person in denial.
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Oh, OK. I didn't know you'd been in the hospital for 3 days about your legs, so I'm not quite so outraged. :) How very odd. You're a real medical puzzle, k&s, you are!
You must have been in so much pain. I am so sorry this is happening. I hope you can get a referral quickly and find out what is happening and what can be done for you. It's just all so very odd.
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Some like Trump, others, not so much. I like to think he is upsetting the apple cart, the way Congress has been doing business as usual.
Even if re-elected you can look forward to his eventual end of term and the public will elect someone else.
Whether that new President will continue to upset the apple cart or join Congress in doing business as usual, driving up taxes and improving nothing but their own bank accounts, well, we will just have to wait and see.
I would very much like for you be be here with us to see for yourself.
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You could try calling the Kidney connection peer support program1-866 390-7337
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Yes, what Charlie said.
:thumbup;
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I feel for you K&S it is a hard thing to go through what you are going through. I also have a heart valve they are keeping an eye on. I hope the leg things gets figured out soon. Make your life decisions wisely and do what is right for you. Lots of caring is being sent your way.
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Oh K&S, how sorry I am to hear what has happened to you. It is heart-breaking. I have admired your advice & wisdom on this site for so long & in a lot of ways, I feel like you're an older version of me. I wish I could help you. I really don't know anything about heart issues, I'm afraid. I just know that when I am in any physical turmoil, I just focus on taking one step in front of the other & make my days as comfortable as I can. A hospice or palliative care, would help you be as comfortable as possible. I've heard that palliative care can also end up extending the life of a patient quite dramatically, so that become a hopeful outcome. I wish you the very best!
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Thank you. I appreciate all your good wishes.
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How are you going today Kicking&Screaming? I take it you're still in hospital? What is the plan from hereon? I hope you're a bit more settled by now. Wishing you the best.
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Thank you, Athena. I am actually in the hospital...again. Third time in a matter of a week or 2. I had another A fib incident so I took another ambulance ride. Since then I've had a nuclear stress test (which came out well) and was started on a new drug that allegedly stops A fib. It's too early to know if it is working but I'm hopeful. A fib is quite unpleasant and very serious in that it provokes clots and strokes. I'm still in the hospital and will, finally, be moved to rehab tomorrow---both to restore my strength and to work on the cellulitis in my legs that makes walking very painful. They are now calling the cellulitis lymphedema from inadequate dialysis. So dialysis and forced walking (forced because it's so painful) are the interventions. So that's about it. Lurking in the background is the more serious issue with my heart is that my mitral valve is leaky and that makes for very poor quality of life and eventual heart failure, but would require open heart surgery which is quite high risk and
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oh, dearie me, k&s. So, you now have a diagnosis. Cellulitis lymphedema; that makes sense considering your situation.
As for your leaky valve, have your doctors specifically advised against open heart surgery to repair it, or have they simply explained the pros and cons and left the decision up to you?
If your current dialysis regimen is now "inadequate", what will happen next?
I'm sorry to hear you are in the hospital again. It must be frightening and frustrating for you.
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I'm still in the hosp. Was supposed to move to rehab las friday but here I still am. Losing strength and conditioning by the minute. I'm the one who doesn't want open heart surgery. Not sure I could survive it at my age and certainly don't want to get through months of recovery---living alone.
Meanwhile, my remaining savings are drying up at a frightening clip, and just had a plumbing emergency ($2,000)
and I totalled my car. No collision insurance and the want to take away my car. So my life contnues to go from bad to worse.
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K&S, since you're elderly & unable to care for yourself at home due to your medical issues, what is the next step towards moving into a suitable aged care facility or home with nursing assistance? Can you ask for a hospital social worker to provide assistance to you at this difficult time? I'd be focussing what energy I had left in appealing for social welfare/nursing/patient complaint management assistance & when the doctor comes around, to beg him/her to make this assistance happen.
When I was going through a hospital medical crisis, everyone assumed I had family assistance ready to jump in (eg hubbie, kids, etc). In truth, I had no one to really help. I had some lovely nurses notice my plight & advocate for me. And there were social workers employed by the hospital to look after patients in distress. Are you receiving this kind of help?
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Wife was Denied State Medicaid because we have too many/much combined 'Resources'. Not only savings/investments, but cars, my motorcycle, and boats. The State said we had to be under $10,000 total resources, so I have had to cash out investments and have been making the $5000 monthly Nursing Home expense PLUS almost another $1000 med co-pays for 10 months already.
I thought she may be eligible in another month but now the Social Servvices Lady is telling me we have to be under $3000. So it looks like I just may have to give up my Harley and my boat before the State will provide any help.
Once she is gone and I won't even have her SS coming in I won't have enough to keep the house, and no resources left to sell to fall back on.
Our Medical care system costs sucks.
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K&S
My afib was diagnosed while I was having a vtach episode. I was in the hospital for a week recovering from the 7.5 hour operation to fix the vtach and embed a icd. During this week I was put on a drug amiadarone (not sure about spelling but sounded something like that).. at the end of the week no afib so I was released the next day. One year later the drug was stopped. Now I have purchased a Apple Watch 4 to monitor for afib so far no signs in 2 years. So most do respond to drug treatment. Good luck.
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I was put on amniodarone too. So far so good, but I didn't have A fib on a regular basis anyway so I really can't tell if it is really working. I do know that longer term use of the drug destroys tne thyroid and liver so it's really a fool's bargain.
I agree our medical system-- and the whole social services/government aid ball of wax is very dysfunctional. i'm sorry, Charlie, that you are being impoverished in order to take care of the one you love. I guess there are some advantages to being widowed and alone in the world. Although I wouldn't recommend having to watch your spouse die of Leukemia either
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K&S, I am just catching up on this thread & am thinking of you today...
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While on amidarone I had quarterly blood work checking my thyroid and liver function. Without any rhythm problems my amiodarone was stopped after a year. I was nervous about reoccurring afib so my wife let me buy $600 Apple Watch 4 which monitors for afib.
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Wife was Denied State Medicaid because we have too many/much combined 'Resources'. Not only savings/investments, but cars, my motorcycle, and boats. The State said we had to be under $10,000 total resources, so I have had to cash out investments and have been making the $5000 monthly Nursing Home expense PLUS almost another $1000 med co-pays for 10 months already.
I thought she may be eligible in another month but now the Social Servvices Lady is telling me we have to be under $3000. So it looks like I just may have to give up my Harley and my boat before the State will provide any help.
Once she is gone and I won't even have her SS coming in I won't have enough to keep the house, and no resources left to sell to fall back on.
Our Medical care system costs sucks.
Wife was Denied State Medicaid because we have too many/much combined 'Resources'. Not only savings/investments, but cars, my motorcycle, and boats. The State said we had to be under $10,000 total resources, so I have had to cash out investments and have been making the $5000 monthly Nursing Home expense PLUS almost another $1000 med co-pays for 10 months already.
I thought she may be eligible in another month but now the Social Servvices Lady is telling me we have to be under $3000. So it looks like I just may have to give up my Harley and my boat before the State will provide any help.
Once she is gone and I won't even have her SS coming in I won't have enough to keep the house, and no resources left to sell to fall back on.
Our Medical care system costs sucks.
Charlie, how does it work? Is the $10K only assets that you own apart from your home?
It sounds like you may need to question the social security lady's assertion that it's now $3K.
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Hello K&S,
Are you still in the hospital or are you home now? I hope your pain & discomfort in the legs is better by now. Please let us know what is happening right now with you? Hoping for the best. :grouphug;
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i am in the hospital...again (4th time in last month) I'm awaiting placement in rehab. My legs are improving with dialysis but still quite swollen. I'm awaiting placement in rehab wich is very hard to find one that can do PD-- in the whole medical mecca of Boston. Shocking. i was released by previous hospital to go home with "services" but didn't get any until 2 days home when nurse appeared. But I really felt I needed help with daily living but didn' have that (it took me 2 hours to make breakfast of eggs!) The only way to get rehab at that point was to go band back to ER, be admitted again ask for rehab. Since it's a weekend, the world stands still. Meanwhile with 4 hospitalizations and 2 ambulance rides I'm out a lot of $$$$ thr (even with insurance). So that really scares me, the rate that I'm burning through $$$.
Thanks for asking, Athena.
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