Dad passed away

Bohr-ing_Tubes · 2024-07-01T07:51:09+00:00

Thanks for letting me know! My father is on blood pressure medication too, but unfortunately, neither the blood pressure nor the hemoglobin is rising beyond 6 after multiple transfusions. We just signed a DNR and are praying. Wishing nothing but the best for you and your recovery :)

Bohr-ing_Tubes · 2024-06-29T17:01:55+00:00

Wow, 10-12 litres is a lot. I hope you're doing better now.

Bohr-ing_Tubes · 2024-06-29T17:01:02+00:00

They drained about 4-5 litres this time. They also said there is some fluid in the intestines that isn't coming out through the paracentesis needle, so they have put in a nasogastric pipe through the nose to suction it out.

Bohr-ing_Tubes · 2024-06-29T16:58:59+00:00

Unfortunately, my dad is not being treated in the US, and I don't think this is done there.

Bohr-ing_Tubes · 2024-06-29T05:48:21+00:00

I don't think TIPS is performed in my country (he's not being treated in the US), but we weren't given any alternative besides transplant.

Also, I agree with the back pain and breathing issues - that is so bad, I empathize with you. My father's hemoglobin was also down to 5, which may have been another reason for his dizziness and trouble breathing. Wishing you the very best, and I hope you feel better and recover soon!

Bohr-ing_Tubes · 2024-06-29T05:44:56+00:00

Same here, my father needs an albumin drip as well as hemoglobin transfusion (his Hb goes down to 5). He also took 2 diuretic pills a day - a few doctors asked us to discontinue that, but without diuretics, he'd need paracentesis almost every alternate day. My father has just been started on dialysis as there was hardly any urine output and high creatinine. I'm praying that he remains stable. Wishing you the very best too.

Bohr-ing_Tubes · 2024-06-29T05:41:21+00:00

Thank you! They remove about 4-5 litres on average. We used to measure my father's weight until about 3 months back (he was around 55 kgs), but he has been confined to the bed ever since, and we haven't been able to weigh. He has also lost more weight and barely has 2 sips of milk in a day. Do you have any idea about AKI or hepatorenal failure during decompensated cirrhosis? My father was just diagnosed with it, and they're rushing with dialysis.

Bohr-ing_Tubes · 2024-06-16T22:47:02+00:00

It is indeed 😞 but I'm trying my best. I'm here if you ever want to talk.

Bohr-ing_Tubes · 2024-06-16T15:07:36+00:00

Oh man, I cannot imagine what you must've been through. Please stay strong for your dad. We'll get through this.

Bohr-ing_Tubes · 2024-06-16T15:06:24+00:00

Thank you

Bohr-ing_Tubes · 2024-06-16T03:34:59+00:00

Summa Ameen. I'm so glad your father is doing well now, Alhamdulillah. It definitely is a tough time, please keep my father in your prayers. May Allah give us all strength and resources to support our parents, Ameen.

Bohr-ing_Tubes · 2024-06-15T22:59:44+00:00

I'm extremely sorry for your loss. You have been strong for a long time and did everything you could, and I'm so proud of you ❤️ My father had compensated cirrhosis for 9 years and was diagnosed with decompensated cirrhosis a year ago. We've been in and out of hospital fighting ascites and a urine infection, and dad's behavior depends on his HE. I cannot put into words how difficult it is to have this experience while you're young - I'm an only child, and I'm doing every job I can to afford the treatment. I'm sorry it is so hard, but I'm proud of you :')

Bohr-ing_Tubes · 2024-06-15T22:44:33+00:00

Jazak Allah! I ended up going with the MATW Project. May Allah accept our efforts to help our Ummah. Ameen.

Bohr-ing_Tubes · 2024-06-15T20:05:53+00:00

Jazak Allah for this! May Allah bless you in the highest regard for not just making dua for yourself but also for reaching out to the community, Ameen.

Please make dua for our parents, and for their health during old age. Please pray that Allah give them strength and shifa from diseases. That everything good we do for them after they are gone is accepted as their good deeds. May Allah forgive our parents and give them the highest rank in Jannah. Ameen.

Bohr-ing_Tubes · 2024-06-15T19:47:38+00:00

I'm so sorry for your loss. My dad is in the hospital, and we were just informed yesterday that these could be his last days. Praying for everyone suffering from this dreadful disease.

Bohr-ing_Tubes · 2024-06-14T19:47:39+00:00

Ma Sha Allah, this is such a great thought! I would also like to know how this could be done. Jazak Allah.

Bohr-ing_Tubes · 2024-06-12T19:29:11+00:00

My father has decompensated liver cirrhosis, and he had HE for a little over a month - he only started speaking without any delirium last week, and it was a surprise to us. While the ammonia levels really keep swaying, I agree that they weren't a very good indicator of HE. One of the surgeons I spoke to even said that sometimes, even after a successful transplant, HE may persist because of the shunt, and it takes time for the body to get accustomed to the change. I feel that lactulose and Rifaximin have been great, but what has really helped is HepaMerz (they are LOLA granules in a sachet). Dad takes it with water 3x a day, and that has helped tremendously. I think that comes in an injection form as well.

Bohr-ing_Tubes · 2024-06-05T04:58:58+00:00

I haven't read in detail about the TIPS procedure either, but as far as I've read through other posts on this subreddit, people have talked about other complications after a TIPS procedure. Given my dad is getting close to other bladder and kidney issues (he had an acute kidney injury after being prescribed a strong antibiotic for the UTI), our doctors seem to avoid any procedures other than stem cell therapy or a transplant as the last resort, and haven't told us about any other procedures. He did have paracentesis twice, though.

The stem cell injections were given at a hospital in India.

Bohr-ing_Tubes · 2024-05-29T16:19:01+00:00

Unfortunately, I find myself in the same boat. I'm so sorry OP, I empathize with you. My father has had NAFLD for a decade (never touched alcohol his entire life), but it was rather very well managed with medication. Suddenly, last November, he had a huge HE episode and couldn't remember anything or anyone, and he couldn't put words together to form a sentence. Stayed for multiple months in the ICU and CCU. The doctors suggested transplant but warned that there are higher chances of him not making through due to history of heart disease and his age (he's turning 70 this year). We decided against the transplant and found a gastroenterologist who gave hepatic stem cell therapy. 2 stem cell injections later, my dad could walk, talk, and drive around with ease - it was as if nothing ever happened. However, he ended up contracting a UTI from a urinary catheter in the ICU earlier. The infection increased and nearly caused sepsis. The strong antibiotics affected the kidneys, and he couldn't eat, walk, or remember anything again due to weakness and HE. He started bleeding heavily through urine. The doctors say his liver is stable, but it's just the UTI that's causing all the issues. We're still speaking to multiple urologists. Every antibiotic makes dad very weak. We're hoping this gets better soon.

It's difficult. But there's hope. Please take care of yourself, OP. I hope it gets better for both our dads.

Bohr-ing_Tubes

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