Lost Son

Hi Sean,

My dad was discharged yesterday. It was a long day so I am barely writing about it now. We were given some instructions and went over the medication. Being overwhelming is an understatement! So much to take but luckily they gave him a pill box. I sorted it for him last night so he should be set.

They are letting him have labs twice a week back home and then he has a post op appointment next week.

He is doing well and happy to be home. The only thing is that he was still leaking from an area where they had a drain. They stitched it up prior to us leaving yesterday and this morning he was hurting and it looked as though there was a little fluid pouch in his stomach. I am not sure if this is normal but I will ask.

Other than that he was told to not do ANY lifting or pushing/pulling over 5 pounds for 6 weeks. After that he should start moderately increasing his activities. His diet was not really restricted past no grapefruit and initially any foods that will upset his stomach.

We were given a ton of info before leaving. Still processing it all. But so very much worth it. It was a joy seeing him walk out the hospital on his own strength. One thing that is a HUGE difference is how skinny he is. All bones at this point. But hope he starts putting that one real quick.

TM, yes I have you both to thank. Sean originally posted it and you brought it back to light during a moment I was very lost!

This site has been a life changer and it is great that we can all help each other. I will be active to hopefully help someone out in their journey by answering any questions and also giving updates.

I must say as I sit at work, just as I get stressed out....I think about the miracle our family just had and tell myself to relax. Life is good.

ML, He doesn't appear to have tremors. He is actually looking better right now than he did right before he went in.

Even though this happened so fast, he was in pretty bad shape the weeks leading up to it. My mom is so grateful that it came so soon because she says that he was at the brink of no return. After 39 years of marriage she would know more than anyone how bad he was.

Before leaving my dad wrote the nurses a nice note and left it in the room. I think it was a great touch and for the first time I saw a positive and truly feeling of hope for him in the past 2 years.

As for the drain, the doctor did mention using womens sanitary napkins as an option. But not much is leaking out, it's just retaining inside. Another thing to note is that his feet are now just slightly swollen. A Huge improvement in the past week.

David, I agree. It doesn't look normal. I was a bit surprised they just stitched it up when it was still draining quite a bit. I'll comment on that.

Lost Son how amazing!! So glad that you found this forum!! so happy for your family!!

Sandia

Lostson,
I am so happy to read about your Dad's successful transplant and his being discharged. Truly wonderful.

Best,
Emma

Hi all,

Sorry I haven't given a more frequent report as it has been a very rough week. Apart from having my dad back home and helping them out with small repairs that came up at their house, I have been swamped at work with some serious issues that came up (to say the least) and to top it off, on Thursday I developed an allergic reaction to something and was feeling very under the weather for days. Luckily I am shaking it off now.

I had to take the day off (Actually today since its 2AM at the moment) as I had to drive dad out to his Post OP appointment to hopefully have his staples removed.

Here is an update:

- He has been going to get labs done locally twice a week and keeping contact with his post tp coordinator on any med changes (Only 1 so far) She is great and calls both of us on anything she needs to communicate.

- A nurse is coming by twice a week to check his vitals and also make sure things are going well. They have him doing some exercises and also checking his vitals and documenting daily reports. So far things seem ok (no fever, high glucose readings, high BP etc.)

- He has been eating well but to date still has some gradual weight loss. He is still very frail. Despite eating better day by day the weight keeps going down. We were told this is not uncommon initially. He has lost 10lbs since discharge.

- His energy level seems to fluctuate at times. Some days he is up and about and wants to do more than he should and other days he wants to stay in bed much of the time. Overall however I would say he is staying pretty active (As in walking and reading etc.)

The other day he felt well enough to drive (But of course we didn't let him, but lord knows if we didn't stop him he would've) On one end it is good he is feeling capable, but on the other he needs to stick to his limitations which he hates because he feels he is being a burden on us.

I will say that he is being very cautious when it comes to colds/viruses by constantly using hand sanitizer and wearing a medical mask around others or anytime he goes out including to his get his labs. He is also eating as healthy as possible and watching the sodium.

Now on to some bad news...today he was out walking (good) but it turns out he FELL! Tripped over a rock he didn't spot in time. My mom told me she actually had to go help him up since he doesn't have the strength not to mention he isn't supposed to put much strain on his stomach muscles. I am glad he had the sense to call her instead of trying to get up on his own.

It was a scary moment to have heard about and I am a bit worried it did some damage. He scraped his knee a bit which doesn't appear too bad. However, my worry is the stress it put on his stomach as I know anything right now can cause a hernia. He was told not to lift anything over 5 pounds. I feel getting up from an unexpected fall might be just a strain on the body.

As of the time he went to sleep earlier, he was complaining of some slight discomfort around his testicular area and lower abdomen (possible sign of a hernia?) I hope this isn't the case, but just the fact that he tripped scares me. Even though he needs to walk and build strength, I feel we shouldn't let him do so much so soon.

I will make sure that I mention this during his appointment to get some input.

So overall, I would say that I am still in the happy and blessed yet extremely cautious phase. I often worry we are not doing all the right things for him even though we sure do try.

I will say that this takes a lot of dedication and patience.

Sorry about your allergic reaction, Alex. I have had several in life, and they can be frightening. Looking forward to the post appointment update today.

Your Dad will have ups and downs post transplant. It does sound like he is doing remarkably well. It is a process.

The fall. Not pleasant, but they can happen so easily to any of us. Does he use a cane just for the stability for awhile?

I would certainly say you should feel happy and blessed. Every day. Good luck today! Big Hugs

ML, he sure does know and he says the mystery is solved on how I was informed on his situation.

He is doing what I would consider well but he is certainly hitting one of those down times. But as we know its all ups and downs right now. He hadn't used a cane thus far but the way he has been this week we have urged him to use one. After his fall he finally realized it was wise.

He felt a bit overconfident since last week he was actually doing better. Now he is dragging his feet a bit.

Since yesterday he has been dizzy and at his worse since he was discharged, so this appointment comes at a good time I suppose.

I am not sure how long the appointment will be but I am glad I drove out last night and got some sleep otherwise driving here and back the same day would be quite a toll. especially since I have to be back at work tomorrow at 5 AM. Not to mention I think the 4 hour drive for dad would be a bit much as well.

I will report back this evening after the appointment.

TM,

I got back home a few hours ago. It was an overall good appointment. The staples are out and his wound healed very nicely with no infections at all.

The best part of the appointment was when the doctor told my dad "your liver numbers are PERFECT" She said that it was almost amazing how perfect they were and all other vitals looked great including great kidney function.

He has now been changed to getting labs weekly and was scheduled for a 3 month Post Op follow up in January. Overall they said that they are very pleased and he is doing great and they see no reason he shouldn't go on to live normally. It was music to our ears and I finally saw it from him...the smile I hadn't in over a year. It was great.

Some things we were told:

- He can drive as soon as 2 weeks (Which puts him at 5 - 6 weeks post TP) as David had mentioned.
- He can travel after they see him at 6 months. This includes internationally. We don't really travel, but I asked because I think after all of this it would be nice if I can start saving for a modest but much needed vacation. The only thing they ask is the destination to ensure any vaccines if needed and to have a plan on where he can be seen in the event of a fever or emergency. But they did mention it is not only doable but after a year encouraged. So that was nice to hear.


That was the good, however, there was some surprising news we heard that made us really take a long pause and realize how dire the situation was. Even more so...the post tp coordinator let us know that after examining his old liver, they detected a small cancer that was undetected with the initial MRI months ago. She mentioned that it happens but that luckily it hadn't spread to the vascular system and was still contained. It wasn't until it was out and completely examined that they caught it.

This was a shock to us all as until today we didn't know this. Of course the initial thought is oh oh...what if it spread or comes back. But then we also thought wow...thank God it he was transplanted before it was too late.

Even though she said he should consider himself cancer free at the moment, they will do an MRI every 6 months pretty much indefinitely just to make sure nothing develops as "it can be sneaky"

She said the chance of reoccurance is very low but that knowing it was there it is a precautionary measure they want to take.

I suppose I have mixed feelings about that, but I think we are all more relieved than worried at this point and won't think of the possible negatives but instead stay positive that it was just part of the nightmare that is now over.

It was a long day but I am very happy with the visit, the information and most importantly the progress.

I agree with Worried Daughter....they often find small turmors in the old liver. They found Mike's 3 months before TP. And that moved him up "the list." To 22 from mid teens.

Mike is on the regimen you describe....MRI and oncology recheck every 6 months. IN between they do Alpha feto protein and Alk Phos every month...as those can be cancer markers also...when they numbers start up, they often do an extra MRI.

Mike has his cancer recheck next week. He had the periodic MRI this week.

I'm glad your Dad has visiting nurse coming in for the rechecks...that is very good.

Continued thoughts and prayers for a full recovery.

Hugs,
MamaLama

It is very reassuring to hear that this is not uncommon and that it is not something to overly worry about at the moment.

It's amazing that for the first time this morning I woke up and thought to myself...now what? By that I feel "wow" this happened and things are in recovery and for the first time in what seems like forever I can breath. It almost doesn't feel normal to not be so worried or stressed out.

Sounds dumb but I am almost not used to feeling this way and in a crazy way feel like I should be doing something.