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Primary Sclerosing Cholangitis (PSC) - Online Support Group

Post Transplant Mucus?

#4

You’re on immunosuppresant so it becomes quite a task to deal with any infection, no matter how minor it is in a healthy patient. Do you have a history of COPD? Did a pulmonologist priscribed Trelegy? Trelegy just got approved last year. Only one medication in Trelegy can dry up the mucus in your airway. But on the other hand, you don’t want it to be too dry then the mucus will stuck there and cause more problems. What I’m saying about nebulizer is actually not using any medication, just deliver the moisture deep into your lower airways to thin the mucus. Again, I’m no expert in lung disease. You’d better consult a specialist.

Many people mistakenly thought that transplant will cure PSC. That’s not exactly true. As my transplant coordinator emphasized, receiving transplant only means the exchange from a incurable disease to a manageable condition.

#5

I do not have a history of COPD. I’ve never smoked in my life. I do have Complex Sleep Apnea and sleep with a VPAP machine so I am under the care of a Pulminologist whose in the same hospital system as my transplant team so they all communicate about my care plan. My PCP suggested recently after diagnosing me with a really bad sinus infection that I take the Trelegy since my Pulminologist had offered that recently in place of the Incruse inhaler with a separate Adavair I go with the Trelegy which has the three drugs combined. I was concerned in reading some of the side effects of Trelegy about using it long term. It stated that Trelegy could cause a weakened immune system leading to infection and pneumonia. So with already having a weakened immune system due to the suppressants I’m wondering if this is adding to my problem. I plan to talk with my hepatologist about it when I go for an appointment in January. My sinus infection has cleared up but the constant nagging cough and mucus in my bronchial is frustrating.

Regarding your comment about curing PSC I must disagree with you. My transplant did cure me of PSC. They kept me on Prednisone for a year after transplant as well as did the Roux-en-Y procedure abandoning the common bile duct so it would not recur. Of course there’s always that possibility but they feel pretty certain at this point I’m probably going to avoid getting PSC again. I sure hope so! I just don’t buy the idea of going from an incurable disease to a manageable condition. No offense intended but I must disagree.
Thanks so much for your feedback though. You always have some very insightful points in your posts. I do wish you would sign by your first name though. Just saying DHZ I can’t connect with you as well :slight_smile:

Mark

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#6

Hi Mark,
How does the VPAP machine work. Does it simply take in ambient air via a filter and pump it into you - or does it use an oxygen-air mix? I ask because at my last colonoscopy for Crohns they insisted on fitting an anaesthetic mask to my nose just in case the procedure went wrong and they had to rush me off to surgery. It was just the pair of prongs delivering “hospital” air up my nose. Within a day or two i had a bad throat - enough that i will be refusing it the next time. Is it possible that the air filter on the machine needs more regular replacement? Is the air too dry? I just wonder if the catalyst for your problem lies in the VPAP process itself. I’m on Imuran, an immunosuppressant, which means I’m ultra careful - and have added Vitamin C to my morning pill round.
Cheers - John

#7

John,
I was diagnosed with complex sleep apnea prior to liver transplantation but I did have PSC at the time. They had noticed in a liver study I was in at Duke that I was having PVC’s when they checked my monthly EKG as part of that study. I was also having blood pressure problems during that time. In addition my wife had noticed me stopping breathing during my sleep and then jerking back to breathing which woke her up. It caused me to kick in my sleep as well when this happened. After 3 all night sleep studies at Duke’s sleep lab they came up with this diagnosis. I couldn’t use CPAP or BIPAP alone I just felt like I was going to suffocate. The company describes the VAP here. “The S9 VPAP Auto is an auto-adjusting bilevel that delivers comfortable therapy to treat OSA patients who may need higher pressure support. Based on the enhanced AutoSet™, the VAuto algorithm adjusts to the baseline pressure so breathing feels more natural and comfortable.” I really like the auto adjusting of the pressure. When I lay on my side it breaths less for me but when I get on my back that thing really ramps up. I use a full face mask as well. I just couldn’t go with the nasal canulas or nose mask. I do remember after transplant that they put a connection inline with my hose where they were able to feed oxygen while I used the machine sleeping. This machine also has the humidification system as well that I can adjust the amount of moisture which helps prevent what you are talking about with the drying of your nose and mouth. Since I have been on the therapy now for 3 or so plus years, I do not have any heart issues or blood pressure issues for the most part. I did begin having some fluid retention in the last several months so they have me on Hydrochlorothiazide which is a form of blood pressure/fluid pill class of drugs. It has helped that fluid issue now and I’m doing much better.
As far what they do during procedures I am not sure what your options are. I’d certainly discuss with the anesthesiologist and they should be able to make some allowances. Of course if you are having an ERCP they can’t put a full face mask on you but they should be able to add moisture to the oxygen flow going to your nose to help with the problem you experienced I would think.

I don’t know how much help my description gives but I hope you can find a solution to your issue. Take care.

Mark

#8

That’s not a mask. Based on your description, that’s a nasal cannula, which has two soft nasal prongs sticking into your nose. A oxygen mask will just cover your nose and mouth area. That’s not hospital air either. That should be oxygen, which is neither warmed nor humidified. Looks like the anesthesia staff did a very poor job explaining to you what you should expect. The reason they told you about why you need oxygen is also ridiculous. One reason you feel a bad throat afterwards could be that the flow rate was set too high. That often hurts a lot. Just use a regular oxygen mask and you’ll be fine.
I wish you tell us which hospital that is. So we should all avoid that place, at least the GI lab.

#9

I must disagree with what you disagree with me!!! That comment is about some people’s misconception that they would be healthy again after transplant. Actually they are not. They do get rid of that disease we are not able to manage. In exchange, they get something else which we can handle much better. So we still need to watch very carefully about our body, which isn’t normal compared with regular person. Disagreement resolved!

#10

DHZ,
Somewhere one of us has misunderstood the posters question. He asked me about VPAP therapy and that’s what I explained to him. Of course you don’t wear a VPAP mask during a procedure or surgery. It’s for sleeping due to apnea. I was simply explaining how the machine works. And they did hook oxygen to mine after surgery in the ICU while I slept as they wanted me on oxygen after surgery.

As for being cured of PSC after transplant I stand by my response. Of course we still must watch our health and deal with immune suppression etc. But the PSC is gone.

Mark

#11

I’m 8 months post transplant…and so far, transplant did cure my PSC. I’m down to 3 meds, and two will go away in another few months.

My side effects have been an occasional runny nose and slightly elevated blood pressure. Maybe I’m just a fluke, but I consider that mild, and I’ll take this over PSC any day.

I got a little congested a few weeks (probably because it’s flu season) and I used Mucinex and Benedryl. 1/2 dose of each and I was fine.

#12

Hi Mark,

I see mucus in my stools sometimes. Very rare through my mouth. As far as stools i talked to my GI and he mentioned if it is very consistent then he will look into further but for occasional mucus drops it’s fine as the entire GI tract is lined up with Mucus. It could be the meds causing side effects, i will watch out.

Happy holidays,
Mike.

#13

I haven’t had a transplant but have chronic sinus problems. I get alot of relief from nasal irrigation. It rinses all the mucus, allergens and whatever is in your nose and sinuses away. It also moisturises the mucus membranes. You need to buy a netti pot or something else tio gently squirt the water into one nostril so that it flows out the other nostril. You need to used distilled or purefied water with about 3/4 tsp. salt. If you use salt it’s painless.
My son had chronic sinus infections and they stopped with daily irrigation.

#14

Thanks for your posts Mike and Jennifer. I need to clarify that the mucus I am getting is coming from my upper bronchial’s not from my sinus’s. I’ve had two CAT scans of my sinus’s at my ENT’s in the past couple of years and they are always perfectly clear. I did have a sinus infection last month which has cleared up. This is just an ongoing issue that’s coming from my upper lungs (bronchial’s). My transplant team tells me that the Prograf and MyFortic can cause these type issues. I’d love to be able to dry that up so it would just not be there but the cause of it is the medication and not necessarily an ongoing infection. Things seem to be doing ok right now but I never completely get rid of this nagging cough that comes from it. It seems to hit me at different times of the day. It’s manageable but just aggravating.

Thanks!

Mark

#15

I was just joking. I know what you are talking about, and has no objection. I was just saying that PSC is gone after transplant, but now the patient has a new organ rejection problem. That’s why sometimes we prefer to say it’s an exchange. To say it’s a cure might simplify the situation too much.

Actually I read John’s poster correctly. I’m talking about the situation he described during the colonoscopy, not VPAP.

I know Trelegy, three drugs combo, two for brochodilation, one also dry your secretion, the third one anti-inflammatory steroid. These combos are convenient for patient, but not quite sure that’s the best for you. Again, just personal opinion and two cents of limited value. There is really no reason for you to worry about the immune suppression effect of Trelegy. You’re on very strong immunosuppresants. That tiny bit of steroid is nothing.

Merry Christmas and Happy New Year!

#16

Thanks for clearing that up DHZ. You had me worried there for a little while. Glad to have that issue solved. My worst after effect from the Trelegy was “Thrush”. I had never got it before but I sure got it with this. Thankfully that’s taken care of now. I’ll have to remember to not only swish my mouth out with water each time I use it but to also gargle. All the thrush was right up there in the back roof of my mouth where swishing doesn’t rinse. Oh well…

Merry Christmas!
Mark

#17

RE: Thrush from inhalers

Rather than just swishing out your mouth and gargling take a big drink of something after use. One thing I do is I use my inhaler first, then I take the rest of my meds with a big drink. There seems to be something different in the action of drinking that clears residue better than swishing, at least in my experience.

azurelle

#18

Thanks,
Good suggestion.

Merry Christmas :christmas_tree:

#19

Hi Mark, I haven’t had a transplant but was diagnosed with PSC in August this year and noticed a lot of clear mucus coming from my lungs at the same time. I wonder whether my body was over producing mucus either as a reaction to the liver damage or my immune system was over active and contributing to the cause of the disease. In any case it wasn’t normal and I feel like it was related to the disease somehow. The mucus has gone and my blood tests normalised after being on urso. Sorry, I know this doesn’t answer your query but am quite curious about this topic and hope you find some relief. I would cut out any medication that increases the production of mucus as it feels like the body is trying to get rid of something it doesn’t like. But I’m not a doctor.

#20

Emma,
Hello and thanks for responding to my post. That’s an interesting observation you have made. I don’t specifically recall having issues before transplant with the mucus issue, but who knows, you may be right and there may be some connection. Right now things are manageable with daily Zyrtec and Mucinex as needed. I notice it most when I have to do much speaking for any length of time or singing during church, etc.
Glad to hear the Urso has helped normalize your LFT’s. I hope you get lasting relief with URSO for many years to come. It helped me for a number of years until the disease progressed to a point that it wasn’t really helping any longer. I hope that will not come to you any time soon.
Hope you had a nice Christmas and are looking forward to a new year with hope and vision for better health and continued maintaining of your PSC symptoms. Please let us know if you ever need any help or information with your ongoing life with PSC. Take care,

Mark

#21

Thanks Mark for your lovely message. Wishing you good health and happiness for 2019. I do have some questions but will try to find the right place to post them…

#22

Hi Mark,

Don’t recall where I read that dairy products can cause mucus issues or something like aid in throat irritation. Not sure if it helps but cut down dairy products for maybe two weeks and see if it helps. I am sure myfortic could be one of the culprits here.

Hope you feel better,
Mike.

#23

Thanks Mike for the input. Thankfully things are improved now. The problem kind of comes and goes but right now things are managable. I’m not much of a dairy drinker, just a little milk in my oatmeal each morning and then of course ice cream from time to time :slight_smile:
Mark