HealingWell
Search Close Search
☰

Schimbare's Transplant Journey Part 2

Support Forums
>
Hepatitis
✚ New Topic ✚ Reply
1 2 3 45
❬ ❬ Previous Thread |Next Thread ❭ ❭
Posted 7/7/2015 10:32 PM (GMT 0)
From David's lips to....

well you know the old saying.

I've been missing again....this time to some oral surgery that laid me low. I feel like crud and am taking the pain pills, but just 1/2 at a time alternating with plain tylenol.

I promise to be a better moderator.

I wrote a long post from a table on the lasix stuff and it zoomed off...sorry.

Thinking of all the folks,

Mama Lama
Posted 7/8/2015 1:58 AM (GMT 0)
Feel better soon, Mama.

xoxo
Schimbare
Posted 7/10/2015 3:42 AM (GMT 0)
From your lips to God's ears.

My bili is rising, as my eyes are definitely yellow. I cannot eat many things - mostly liquids seem to go down ok, though. And fruits and vegetables. Protein is getting more difficult for me to tolerate.

Do you think I should consider Ensure or something like that? I used to eat protein bars, but I cannot tolerate them any longer. Greek yogurt is awesome for its high protein as compared to regular yogurt, but even that is becoming more difficult to eat. Fortunately, cake and cookies, sorbet and a bit of ice cream still go down just fine. : )

Really, I had no idea that the wait would be like this. I had no clue that so many people had to wait just to get sicker. I don't know. But it seems pretty ****ed up to be waiting to get sicker. It is not like there is any other way to cure me or others who wait. At this point, the risk of transplant seems well worth it, considering my prognosis. I know they don't want to transplant people too early, but once it is time, one would think that that they should get on it, if you know what I am saying.

The new UNOS proposed rules don't seem to propose to do much at all, frankly. I understand that change must come with judicious, thoughtful communication among appropriate stake holders, but jeez louise, it seems to me that things could move a little more quickly to help more people who are in dire need.

I was looking again at at Masters programs in public health, and related fields. I hope I can get a Masters in that field after I get transplanted. There are some really good programs at Columbia, and I think I have a chance of being admitted because my first masters is from Columbia Teachers College, and because, clearly, I am old and sickly and I have not accomplished much in the last several years - at least as far as Columbia would care about. But we shall see what the future holds. Just being alive and healthy would be a dream come true.

Oh, David, I saw a show on HGTV about buying a home where you live. What a beautiful place it is. Once Paul and I are better sailors we will be visiting, I am just saying...

After that, Paul and I will be in Arizona to visit themiz.....

Truly though, our home is open to anyone who needs a place to stay on Long Island. I wish we were closer to the city hospitals. On the other hand, we do live near the water, so that is nice.

Much love to all, and I am serious about any members needing a place to stay on Long Island,

Schimbare

Love to all,
Schimbare

Schimbare
Posted 7/10/2015 1:53 PM (GMT 0)
Susan,
I didn't receive a liver until I was within a week of death. Most recipients are in the same position. I realize this is not what you want to hear, but it's the way the system works. I was deathly ill for 4 years. Until I was near the end, my place on the list was not close to being called. I'm going to be on LI as of next Tuesday, in Mastic Beach. Is that close to you?
Posted 7/10/2015 8:43 PM (GMT 0)
Mastic Beach is a solld 45 min drive from me. I'd love to see you, but it is too much for me to spend time out and about. And it is too much to even be awake and comfortable to have visitors. Even my friends have not been over to visit in our new home.

So, I think we will have to skip this visit. : (

xoxo
Susan
Posted 7/10/2015 9:26 PM (GMT 0)
No problem. When I was feeling crappy, I just wanted to be left alone.
Posted 7/16/2015 1:22 AM (GMT 0)
Greetings All!

I have another autoimmune disease, aside from autoimmune hepatitis. I have Sjogren's syndrome, which for me is characterized by dry, itchy eyes and an extremely dry mouth.

I developed a lump which was diagnosed as a clogged salivary gland on the side of my tongue. Like, maybe a year or two ago. Well, I keep biting the darn thing by accident which is extremely painful. Not only that, but I often bite it while I am sleeping, then I wake up with a big spot of blood on the pillow case. Very gross.

So I saw the Sjogren's syndrome mouth MD today, and he cut the lump off. It is most likely a odd lumpy thing that happens when you bite the thing over and over. But it could be cancer, but he doubts that very much. I don't think it is cancer. The biopsy will be back on Thurs or Fri.

He stitched it up with about eight stitches. Of course it hurts very much, but for now I have 5mg of oxycodone coursing through my veins. I will sleep well I am sure.

Well, that is all. I am getting more and more loopy as I sit here typing. I would to want to type anything I might regret later. Wow. I have to go to bed.

Love to all. Thank you all for your sharing and support.

Schimbare
Posted 7/16/2015 3:21 AM (GMT 0)
Sounds awfully painful, Susan. You sure did not need that! The pain meds may cause your HE to be worse. Be aware of that. Take good care and keep in touch on the biopsy. Fingers crossed for you, kiddo. Big Hugs
Posted 7/16/2015 6:13 PM (GMT 0)
themiz,

Any time I am medically or psychologically stressed the HE is much worse. I could not remember the name of the street I live on (remember that I moved about a month ago). i told myself to try to relax and it would come back to me, and it did.

I felt fortunate to take the pain meds to get some good sleep. My thoughts and prayers last night were with those who must abstain from these types of drugs.

Ocshner is re-melding me. Sinai re-melded me a few weeks ago. I thought it was odd, but whatever - two MELDs, one MELD....

I slept well last night, an I am spending the day in bed sleeping today. Very little pain. I took a tylenol.

I am SO happy that the lump is gone. OMG, you know how much it hurts when you bite your tongue....well accidentally biting the lump could bring tears to my eyes.

It took a very long time, but my support team here at home is in place. It turned out to be a logistically complicated day, between the 15 year old who thinks I am his personal driver, and dear Paul who had to take a conference call from Australia at 7pm, meaning he had to get me home, then go back to work. I'll get by with a little help from my friends........and occasionally a cab driver and an ex-husband.

I am falling asleep here as I write. Thanks for your support.
Schimbare

Hoping this makes sense and is not a few paragraphs of jibberish
Posted 7/16/2015 6:42 PM (GMT 0)
Makes perfect sense :) I have seen some pretty scary HE from pain meds when themister broke his shoulder, so I was a bit concerned about you on that front. Seems you are doing just fine with them. Glad you feel better today. Big Hugs
Posted 7/17/2015 3:46 AM (GMT 0)
Thanks, themiz. I had forgotten how long those drugs last in my system. But I remembered when I could barely keep my eyes open all day.

I feel better now.

xo
Posted 7/24/2015 4:44 AM (GMT 0)
Hey! Greetings All!

The gas pain has abated, I took some lactulose (which I normally do not take) along with the Xifaxin, and my brain is better. It was really bad yesterday and the day before (I don't really remember. LOL)

Swelling in legs is a little better, but there is definitely fluid in my belly and lungs.

I have oral lichen planus, that frankly is making me crazy. I am going to research it more, because it is driving me mad. The lump the MD removed is not all healed up yet. I am a slow healer nowadays. So when the open wound is scratched on my teeth of by food, etc, it really stings for a while. Just another annoyance, along with the massive amount of sleeping, the drastic changes in what I can tolerate to eat (basically I am down to white rice and plain cooked pasta)(ok, that is an overstatement, but really, eating is a real problem. I actually bought the dreaded Boost and found it was not that bad over ice.)

Let's see, what else? Oh, my fingers cramp in the evening. Painful and annoying. I am itchy at night -I think my bili is up to around six, if I recall correctly.

My MELD is up a point to 19, so that is good. Ochsner said I was approx 18 on the wait list for type O blood livers. But you know how that goes. The list is so fluid that it really gives very little accurate information to predict much of anything.

(At Sinai, I am about in the 300's on the wait list for type O blood livers. They are transplanting O's at the average of a 40 MELD. It is terrible, just terrible.)

I go see the NY hep tomorrow.

Sleep tight
Posted 7/24/2015 1:03 PM (GMT 0)
Good morning!

I decided to cancel my appointment for today because I definitely do not need to have the ascites tapped. We had discussed this and it was suggested by my transplant coordinator that I make the appt and then cancel it if I felt better.

They are so flexible, communicative and cooperative in regard to this sort of thing. The transplant coordinator suggested to make the appt, just in case things were getting worse so I could avoid a visit to the crazy ER, and then cancel it if need be. It is so out of the ordinary to be told it is preferable to cancel at the last minute, as opposed to being charged a fee and publicly flogged for canceling a dental or dermatology or any other appointment.

I am tired and have the usual relatively normal complaints, so it is all good. At least for now!

Susan
Posted 7/24/2015 7:58 PM (GMT 0)
Hi, I am happy your biopsy was ok, Susan. HE stinks and makes everything seem so much worse. Good to know you felt well enough to cancel your Hep appt today. 300 on the NY list is just ridiculous. You made a good choice getting dual listed. When you get "sick enough", the footwork is done! Enjoy your day. Big Hugs
Posted 7/27/2015 12:47 PM (GMT 0)
Thanks, Themiz.

Dear boyfriend and I went out on his little sailboat today. I felt horrible, to tell you the truth. But he is so wonderful, saying that at any time I wanted to stop and go home, that it was perfectly acceptable to him. He prepped everything, and we decided to just motor around rather than sail. It requires two people to sail, and I could really do nothing in regard to being helpful, so we just used the little engine.

It was a wonderful outing on a beautiful day. But.

I was able to ride on the tinder out to our mooring and step aboard our boat. But by then - I was done. I was exhausted, nauseated, thirsty and miserable. He got the cushion out for me and I lied down when we got on board out boat. Just lifting my head made me feel horrible. I felt like a giant tuna that had just been caught. I was a big fat fish that could do nothing for itself.

I actually felt like one of those "wounded warriors" that might be paralyzed, etc, but still they are strapped into a plane to do a tandem jump - or a guy that liked to ski, so they strap the guy in a skiing chair and off he goes. I'm not a war hero, but the near total incapacitaton - in my case due to ESLD - made me think long and hard about those who suffer much more than me.

So then we made some jokes about how dear boyfriend will just strap me on to a little trailer or cart so that whatever we are doing, he can just drag me around so we can be together. So romantic, no?

Today I will lay low. Thinking of all of you out there and wishing you health and peace.
Liver Girl.
Posted 7/29/2015 1:17 AM (GMT 0)
Greetings.

I now have an infection in the pad of my thumb. I have no idea how I got it, but the thumb is red and somewhat painful. I went to the doc-in-a-box who was great, and got right on the line with my transplant hep in NYC to be sure the prescription of Keflex was appropriate.

No fever, though I do have nausea, but for now with no fever there is no reason to think the thumb infection has gone systemic.

My whole digestive system has gone pretty haywire. I have waves of level 5 pain in my abdomen that come and go, but never go away completely and I cannot eat much of anything. OK, rice pudding went down ok, and a bottle of high protein Boost.

I did a bunch of reading on the complicated interaction between ascites, pain, gas formation, increase in HE and malnutrition and I feel like that is where I am now.

For my level of symptoms, there are bits and pieces of remedies, like upping the lactulose, taking gas-x, getting more protein and more vitamins into my system, etc. Also, keeping up with the diuretics to try to keep the edema and ascites from going berserk, but also drinking enough fluids to work along with the lactulose and Xifaxan.

I am very weak, and can only stand or walk for a minute or so. I don't even feel well when I sit up. I must lie down and try to relax - meditate, etc, but the waves of pain are not subsiding at all.

I am developing a generally bad attitude online with posters that I disagree with. Dear Boyfriend said he noticed a negative change in tone and judgmentalism in some of my online writing. Yeah, well **** you all, darn it. No, just joking.

While I know it is HE related, I think that some of the visceral anger that I feel about being sick is coming to the surface, as my psychological guard is down due to the HE. I've had tons of therapy regarding being sick and needing a transplant, and I feel very good about my general attitude towards my life and health.

But I am not surprised to see a bit of snotty-ness and anger towards strangers on the internet - who likely have their own particular set of issues regarding liver disease, and don't deserve a stranger's wrath. So, I have to watch that. Any more negativity and I will have to ban myself from replying to others.

The ongoing pain is wearing me down. Eh, tomorrow is another day. Once day closer to transplant, god willing.

Susan
Posted 8/3/2015 1:44 AM (GMT 0)
Greetings from the ER. I got a fever that went up to 102, and so now I am here.

My entire body feels like crap. I am waiting for the blood work to come back.

I am too sick to write. But I am in my home NYC hospital, and that is a good thing.

Updates tomorrow....sigh.
Posted 8/3/2015 1:55 AM (GMT 0)
ThinkING of you. I am also in NY at the moment. With kids and grands near Albany. Feel better. Hugs. ML
Posted 8/3/2015 2:01 PM (GMT 0)
How are you today, Susan. Worried about you. Big Hugs
Posted 8/3/2015 9:06 PM (GMT 0)
Oh thanks for your concern, theMiz.

They are still looking for the source of the infection. They drained TWO LITERS from my pleural cavity, and they looked twice to find a nice pocket of ascites fluid, to no avail.

Paul is totally rising to the occasion as his caregiving role is increasing. OMG, I love him so much.

I have a headache and body aches, but overall my pain is 3, with no spikes or anything. I'm saving my dose of tylenol to kill the headache right before I go to sleep. OTOH, all day, I've fallen asleep at the drop of a syringe, So, I am ok.

Details at another time.

This group is so awesome!
LG
Posted 8/4/2015 12:06 PM (GMT 0)
It is wonderful that you have Paul keeping good watch over you :) As un-fun as the hospital is, I am so glad you went in quickly and are getting the care you need. Will they spring you loose today? Hope you feel better this morning. Thinking about you. Big Hugs
Posted 8/4/2015 1:33 PM (GMT 0)
I'm checking the forum when I have cell service next few days. In Adirondack park and it is spotty in the towns. Hoping all are feeling as well as you can.

Hugs.

Mama Lama with my grandkids.
Posted 8/4/2015 10:58 PM (GMT 0)
I was going to tell you a chicken story as a diversion but it seemed too trite..hope you are feeling better today. Thinking of you...
Posted 8/5/2015 9:54 AM (GMT 0)
Since Sunday, they have been looking high and low for the source of the infection that is causing me to have a fever.
blood tests, blood cultures looking for bacteria, They gave me some strong ass IV antibiotics which don't appear to be having any effect.

Then they looked for blood clots in portal vein, hepatic artery, and other liver veins/arteries. A 2.5 hour sonogram. Frankly, I was exhausted by the end.Nothing there, though one little fellow is "diminutive".
lol Nothing on me is diminutive. cracked me up. Any way the MD's here want to see the little hidden fellow, so I will get an MRI or ct scan tomorrow.

Diminutive!! I am tall, sturdy American stock! Though my family did not go west to be farmers. We stayed right where we landed, in NYC. The women worked as domestics or seamstressess. I'm not sure what the men did, but I know a bunch of the men from Ireland did not make it any further than to be bowery bums. Sad.

But I digress. They also looked for clots in the femoral artery in both legs. no clots there.

Tice they attempted to get some fluid out of my belly, but as in the past, the fluid in my belly is in little blobs. One guy got so far as stop stick a needle in, but he missed the blob. The next attempt resulted in a decision that there was nowhere accessible to safely get any fluid.

The fluid, was in my pleural cavity. My lungs were being squished. They did a thoracentesis and sucked out 1.7 Liters of fluid. They tested it, and there was no bacteria. Prior to that, I was pretty much gasping, but I though it was because the ascites was pushing up, squashing the lungs. Last time my lungs were filled with fluid, I was coughing, and I could hear crackling in my lungs. Nothing this time.

Frankly, by now I expected to be fully clothed, wandering the hospital, doing jogging exercises in my room, as I have done in the past, pestering the staff to get discharge orders. One time I went around and put nice quotes on all the white boards I could. I was ready to get some markers out and make little posters of meaningful quotes - and stick them on the walls. Fortunately, they discharged me.

But this time, I do not feel well at all. I am very weak, my stomach hurts despite my incredibly limited diet. I walk super slowly, I have shortness of breath again and muscle aches. And I feel woozy on my feet. I am achy. I have no intention of going home in this state, unless this is the healthiest they can get me.

I was telling my mother how I felt on the phone last night and I said,"Mom ......I think there is something wrong with me.......I think I am really sick. " At first she did not get the joke, but then she did.

I gotta say. Something is definitely wrong with me, and I am not joking. LOLOLOLOL

It is morning now. I had a crappy night's sleep. I was too wound up about planning in my head all that must be done before I can go. I will sleep now.

imbb, chicken stories are always welcomed. Please share!!








Oh, did I mention.......my last MELD was 22!! I was so happy I was beside myself. Ochsner suggested I go down there and wait when I get to 20!!!! Woo Hoooo!

ReplyReport post
Posted 8/5/2015 3:03 PM (GMT 0)
It seems like the same problem that hospitalizes you far too often. Lungs filling/fever/unknown infection. This stinks.

So far, themister has not had any of this lung stuff. He had the gall bladder infections. They took that out in a really risky surgery during his 2nd treatment. Bloods were trashed and a scary emergency surgery. But it was worth it. No more pain from GB, no more infections, so far. With his GB, bili shot up, so did MELD, then it went back down after infection was controlled. That was 2011. Such a long time being sick, sick, sick for you ESLD sufferers.

You must be so tired of this dance. I am watching for your posts and holding you in my thoughts. Thanks for the update. Get better. Big Hugs (and also to your Paul )
✚ New Topic ✚ Reply
12345