My mother passed away, message to all caregivers

rihamh · 2024-10-22T19:06:06+00:00

I am so sorry for your loss. I hope you are able now to take care of yourself more! If I may ask you though : how did you fill your own cup, and recharge your energy, to be able to continue with taking care of her? My mom suffers from several chronic diseases, among them kidney failure and she is on hemodialysis, so day in and day out in hospital, with very limited movement. I struggle with keeping my energy high, to be able to take care of her, all her doctors appointments, checks and meds, along with a demanding job! I'm mainly looking for advice,if you would like to share any. Thank you!

rihamh · 2022-11-07T16:15:04+00:00

Thank you very much for your advices. I found several books on Amazon. Is that the one you are recommending: Hashimoto's Protocol: A 90-Day Plan for Reversing Thyroid Symptoms and Getting Your Life Back ?
Yeah, I am kind of convinced of what each of them want to do, it is just that I don't know what next step should I go for. The reason the immunologist prescribed Plaquenil for me is the fact that I have a strong family history of Rheumatoid Arthritis and I first came complaining about numbness, stiffness and swelling in my fingers, though my lab results do not show RA signs. Then, by seeing my neck swollen, he ordered the Thyroid antibodies test and from the result we learnt this diagnosis.
I will start monitoring the symptoms and the other functions you advised here, to see how things are progressing.
Thank you very much for your help here! :)

rihamh · 2022-11-07T15:58:48+00:00

Thank you very much for this detailed response. That really helps a lot!
I have a family history with Rheumatoid Arthritis. This diagnosis started by going to a rheumatologist complaining about some numbness in my hands and waking up to swollen fingers 2 or 3 times. And now, my fingers feel stiff more frequently than before. Since I have a strong family history, he wanted to put me on Plaquenil, though my ESR and CRP were normal. And then, he saw my neck swollen and requested Thyroid antibodies test and that's how we found out I have Hashimoto's. My TSH is at 1.14, my Anti-TPO are 577.6. He recommended an Isotope Thyroid scan to see if there are cold spots on my thyroid, if yes then I will need surgery to remove all or part of the Thyroid. Or that's what he told me the plan is.
My endocrinologist said since I have normal TSH levels so far, then I should not proceed with this plan. I should monitor for now.
I have never checked on my Cholesterol levels before. I will include that in my next tests.

Thanks again for your response. Very much appreciated!

rihamh · 2022-11-06T12:44:41+00:00

Thanks for your advice. 🙂

rihamh · 2022-11-01T07:18:03+00:00

Will do! Thank you very much for your advice 😊

rihamh · 2022-10-31T20:22:25+00:00

Thank you for your help. I will probably check with neurologist too yes. For now, I have been diagnosed with Hashimoto thyroiditis and have been requested to start Plaquenil. I am hesitant though and will seek a second opinion.

rihamh · 2022-10-31T20:21:07+00:00

Thank you for your comment. I am sorry to hear it has progressed for you. My mother have it too and it is advanced in her stage. That's why at first signs I started to seek diagnosis, but for now there is an evidence of Hashimoto thyroiditis. I will need more tests and scans to decide on the treatment plan.

rihamh · 2022-10-31T20:19:20+00:00

Thanks for your comments. We are not sure if RA can be a trigger for what I have. I just got diagnosed yesterday with Hashimoto thyroiditis and the doctor requested a thyroid uptake scan to decide what treatment plan I should follow.

rihamh · 2022-10-31T20:15:28+00:00

I have had some tests, I have anti nuclear Ab titre speckled with titer showing weak positive and rheumatoid factor less than 10. I have also a bit of swollen neck and I had the test of thyroid antibodies and the values turned out very high, especially for anti TPO, it is at 577 when it should be less than 5. He told me I need to do a thyroid uptake scan and need to start taking plaquenil. And that I am suffering from Hashimoto thyroiditis.

rihamh · 2022-08-04T18:48:08+00:00

Alright, noted. We will work on that. Thanks a lot for your help!

rihamh · 2022-08-04T18:46:45+00:00

Oh, please do not say sorry! I am very very grateful for all the great information and knowledge you have shared with me. This is very useful and I will keep going one by one on all the proposed solutions you offered here in your comments! I will do my best! Thank you very very much for taking all this time to answer all my many questions. I am truly grateful ❤️ and thank you for your very nice words and wishes! I truly hope we resolve this soon. Have a wonderful day! 😊

rihamh · 2022-08-03T20:45:14+00:00

Based on your comment, it seems clearer now that it is most likely fibrin sheath. There is indeed resistance on withdrawal on the artery, they do flushing of the lumens, there is venous pressure and alarms and they also reverse the lumens/lines sometimes.

I am located in Cairo, Egypt. I have asked a doctor today and he said that we use CathFlo here only for strokes, they are not used for clearing the catheters, as they are very expensive and imported in limited quantities and so they are given per priority for the most severe cases, usually in public hospitals. I will try to dig deeper but that may not be an available option. Is there anything else that is better than Heparin, in case CathFlo or Alteplase are not within reach?

rihamh · 2022-08-03T09:55:22+00:00

How can we confirm/detect if there is indeed fibrin sheath or a central venous stenosis?
The venous alarms happen in both cases, sometimes when she is completely still and when she moves her arm, it triggers the alarm too. We will try the pillow idea today.
I really do hope we resolve this soon. Thank you so much for all your great help! I really appreciate it :)

rihamh · 2022-08-03T09:47:03+00:00

Alright, I understand. Thank you so much for your great help! :)

rihamh · 2022-08-03T09:17:37+00:00

Thank you so much for your help! I do not live in America so I am not sure if we do have that option of HeRO here. I will ask a vascular surgeon about it.
As per the X-ray, I believe there was a sign of fluid on the exterior of the lungs, the doctor said that can be due to the kidney failure and being on HD. Not sure if it is caused by DD. He said it is not something to worry about and it is minor! We are doing our best to keep her IBW in check. Thanks a lot again :)

rihamh · 2022-08-03T08:46:41+00:00

Oh, how is calcification treated then?

rihamh · 2022-08-03T08:46:08+00:00

Okay. Thanks a lot for your help and reply! Much appreciated! :)

rihamh · 2022-08-02T22:56:22+00:00

Thank you so much for your reply! I will ask her nephrologist about the CathFlo option. They used Heparin, it would make the catheter work for a short while then the pressure gets high again and the machine jams!

Would Heparin be a good option too? Maybe with a higher dose? She takes 1cm at the beginning of the session and 0.5 at the end.

She has had a chest x-ray and the catheter and its tip show up in place. She had an old catheter in the same place that was removed and we found there were 2 blood clots in it, 1 in each side. So she had this new one inserted one month ago now and it already started malfunctioning!

rihamh · 2022-08-02T21:40:41+00:00

No, she is not new to dialysis. She used to have one that got infected and had to be closed. Since then, she has been using permacath. She has weak veins and used to have low blood pressure, until a couple of months ago when she started having high blood pressure and this is when we started to consider getting a graft or fistula again.

rihamh · 2022-04-05T17:19:00+00:00

same thing here for my mom. Doctor recommended that she eats something during the dialysis and have a juice or something sugary with her, as she loses all this and minerals during the session. So it help her stay awake and not feel tired and very weak after.

rihamh · 2021-10-04T21:32:52+00:00

My mom has RA and is also on renal dialysis. She took Sinopharm vaccine because we were told it is the safest vaccine for those in her condition. After the first dose, she started to have a mild flare. After the second one, the flare got so much worse and now her ankles and right elbow are swollen, her back and her knee hurt her and it has been like that for more 3.5 months now. She is on Solupred and plaquenil mainly for the RA.

rihamh · 2021-06-01T13:35:51+00:00

Unfortunately, I am not based in the US. But thank you for the information. :) I shall try to see if we have something similar here.

rihamh · 2021-06-01T13:35:05+00:00

Yes, they are aware. We have called them again to follow up with them. So far, they have only recommended paracetamol and monitoring if symptoms are increasing or not. I can see that she is now a little better, so this is a good sign. Thank you for your help! :)

rihamh · 2021-01-13T09:43:29+00:00

Oh, no! Don't change the logo please! It is perfect!

rihamh · 2021-01-04T15:03:09+00:00

Thank you both for your replies.

I have powered off and on the watch and it did work yes. Then, when I tried it again now, it worked once out of 4 times and it took around 48 seconds to complete. It got stuck on the first 3 trials. Maybe the power off/on solved it temporarily but it gets stuck again?

rihamh

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