HPS - Just how common with Cirrhosis?

[john110865]

So, I am NO expert, I am an expert in Statistics, but not medicine.

HPS ... 30-40% of people with Cirrhosis have HPS?

First thing, get your Oxygen checked - one of them finger SpO2 or SaO2 things. If normal, your reading is 96-100%. Below 94 is not good, mine is 88% resting, drops under 80 with any exercise (I have been put on 16 hours home o2 a day).

At 88% most advice is you are starving organs of oxygen. That cannot be good??

Me, diagnosed with Cirrhosis (never advised what level of damage), O2 levels under 88... Diagnosed with Haemochromatosis (Iron levels over 2,000), HPS, Cirrhosis ... yet I feel fine - no shortness of breath???

Has anyone got similar problems? Please advise and discuss ... something somewhere ain't right!

I am looking, we are looking for some trends here - F**k the docs, most have not any idea ... send me as much data as you can, and from a statistical perspective I will try and make sense of Cirrhosis and HPS.

[Dldtx]

Yes and kind’a , HPS it’s also related with/to portal hypertension ( my blood pressure fine with medication but pulse rate between 90-122 for no reason) what has happened with me the liver is swollen which presses up / causes the diaphragm to to take up lung space which allows me to inhale just fine but exhale only about 70% which isn’t enough to filter out the toxins I have inhaled I bounce between 90 to 96 % no oxygen and my lung X-rays are normal and I have Dyspnea, so there is the possibility of intrapulmonary shunting, As far as Haemochromatosis no . I take Xifaxan and Lactulose because of acute hepatic encephalopathy to remove toxins form digestive tract. For some reading up on stuff I hope this helps

atsjournals.org/doi/full/10...

onlinelibrary.wiley.com/sto...

DLD 🤠

[john110865 in reply to Dldtx]

Hey Dldtx

Thanks for the reply, I don't get on so often. Yes I had Portal Hypertension, well I was told I have, whether I believe it or not ... who knows. Anyway, was put on propanolol (just 20mg) for HR and a low dose of peridotol? for blood pressure. My HR resting is 55, BP is 130/80. So, all controlled there. My issue is 90% Sao2 resting, soon as I stand 75%-80%. Returns to 90% in 2 mins resting or on the o2 at 2-3L. My lungs normal too, actually 2 x capacity they said, but residual is not good? eish... complex... My issue now though is I have my first LT meeting on the 23rd Feb. I appear (and largely feel) perfectly fine, but my o2 levels are way too low and as stated I think I have cirrohsis? Do they ever tell you the extent of cirrohsis ... I cannot seem to get an answer.

Enough of me, how are you doing? You mention 90-96 no o2? I cannot get above 92% with no o2. The inhale/exhale sounds like my symptoms? i.e. my capacity is 200%, but my residual is lower than it should be. My advise - go get a bubble echocardiogram done to check the right to left shunt. But what do I know ... anyways, keep well. John

[Dldtx in reply to john110865]

I just got out of the hospital couldn’t breathe had some sharp pain in right lower abdominal ( no idea about pain and still breathing problems no co2) I have no gallbladder so I was bit worried. I did find out something that may fit in our line of SOB ( shortness of breathe) I had a Transthoracic Echocardiography minus all the medical crap, basically it shows my blood grade 2 diastolic dysfunction left ventricle then with Tricuspid valve: There was trivial regurgitation.which means the blood runs backwards at times in the left ventricle 🙃 that will set off your taciacardida & SOB right quick. There are stages of Fibrosis, As far as the extent of Doctors telling you I don’t think they like to,I have a liver specialist and I have explained to her look in this situation i obviously have a “Splitting personality” so you got to tell me realistically it’s either 👍 or 👎so tell me please . Another way to know if you don’t where your at is Cirrhosis can be divided into 4 stages: Compensated stage 1, no varices, no ascites; stage 2, varices without ascites and without bleeding; Decompensated stage 3, ascites+/-varices; stage 4, bleeding+/-ascites. Yearly mortality ranges from 1% in stage 1 to 57% in stage 4. ... The incidence of variceal bleeding is about 25% at 2 years., (ncbi.nlm.nih.gov/pubmed/172....

Also I follow the Child–Pugh score & the Meld score since I get all the results of my blood work and needed info as there is more going into those scores in the consideration of transplant and success (like shunting May add points towards transplant). Your progression may never get into all the stages where others skip straight to the end and some follow the book so to speak. Here is your reading , hope you feel best as possible.

en.m.wikipedia.org/wiki/Chi...

en.m.wikipedia.org/wiki/Mod...

hepatitisc.uw.edu/go/evalua...

DLD 🤠 Tx

[john110865 in reply to Dldtx]

Again, thanks for the reply. Not sure about the first half ... will need to check and come back. SOB - I have none, so far! I have had varices banded, no ascites. But I have had bleeding? Stage 2? Mentally and emotionally I am strong, physically also ... sure I am not going to run a marathon soon, but I feel ok.

I guess what I am saying is I know my o2 levels = I am sick ... how long before I actually feel sick and what do I say to the doctors who are going to test me for LT?

To you ... keep the one personality always better to know oneself I guess?

Sigh ... I think the worst thing about disease and illness is the not knowing ... bloody docs need a course on humanity?

[Dldtx]

Here is something I got from where I guess I will eventually be , it’s to read about everything LT related prior to and after it helped a lot putting things in perspective for me , hopefully you can find what your looking for in it to help with questions or answers. Now this is in Texas but it should still apply.

universitytransplantcenter....

This exhaustion and Hepatic encephalopathy and SOB kicks my butt I can only imagine having to deal with varices though I am as close to having them As you can get. As far as my personality in regards to any medical diagnosis I am referring to black and white, I find it easier for me to know the truth no BS, no need to wonder or guess , hell I may forget anyway . In my understanding as of my recent hospital stay about o2 levels, once the oxygen saturation levels drop consistently to 88% and below at rest you should be evaluated for supplemental oxygen therapy but it’s below 70 when your sick. This is why I was telling you about that Transthoracic Echocardiography test it could answer a lot of questions. But as to when you will feel sick I truly believe that no one person ( especially the doctor) is able to Specifically know the when or if’s , and hell I question all the whys . I personally don’t worry about cirrhosis either way anymore it is what it is and causes all kinds of problems etc ... I don’t like pain an miss breathing normal, I hate hate needles, dr offices, hospitals & diets,

My support group (my family) we got prepared like the booklet says to, and we are at peace we understand cirrhosis is a time consuming slippery slope it will either gradually be getting worse or quickly just have to watch for what’s new, we understand it’s not the end, could be though obviously no one is 100% sure, and there’s a chance it possibly may gradually get better with medical help, either or I am still going to have fun when I can. I think that booklet will help a lot.

DLD 🤠

[john110865 in reply to Dldtx]

Cheers, sounds a lot like me