Hospital Trip

[Braveheart65]

So 4 wks after transplant, 2nd trip to clinic. Bit disappointing. I am in pain, constipated on and off & am pretty sure I’ve got a UTI as I’m going to toilet every 20/30 mins and passing little.

Nurses were fantastic.

Doctor looked at wound, happy with it. Asked me how I was told him codeine was making me constipated, in pain and backache started. Pretty sure I had a UTI and I brought a sample. I had run out of most of my meds except codeine.

He asked if it burnt/was sore when I passed urine I said no, he said it’s not an infection then so didn’t test sample.

All painkillers will make me sore so no point changing to something else. Therefore it’s paracetamol. He asked how much I was taking, I told him discharge info told me to take 2x500mg 4 times a day (if needed-it’s defo needed), he said cut it to 500mg 1 tablet 4x a day. No way. Not happening. Came out and cried.

2 hrs there, 2 hrs back and feel it wasn’t worth the pain of travel.

Not a good day.

[Wass71]

Oh no, I'm just seeing this. How awful!! At my hospital there is one Dr who is terse, and not too helpful, but I couldn't imagine being dealt with like that. That's rubbish about the paracetamol, I was taking full dose of paracetamol, plus 60mg oxycodone per day at 4 weeks. ( as long as you dont have kidney problems or anything other that would require you to limit drugs?) Take the full dose of everything you've been prescribed, dont wait for the pain, take it at regular times, pain relief has a cumulative effect, it is much harder to get on top of the pain with nothing in the system , it sort of builds to a level that gives a background of pain relief Often people try to manage until they need the drug but that is not ideal with post surgery pain. I can not believe a Dr would be so uncaring. Did he not understand you were saying what you had wasn't enough!!

How stupid to not test urine, at least a dip stick would have indicated if it needed to go to the lab.Regarding frequency of urine, make sure you are drinking loads. If urine is too concentrated it irritates the bladder, and makes you go more. Apparently, there is no definitive evidence that it works, but cranberry juice, or cystopril has anecdotally been known to help( what my gp said). It cant hurt anyway. If you feel sure things aren't right, I would take a sample to your GP, they would definitely check it.

Oh, I'm so so sorry to hear this news. Could you phone and ask to speak to the TP co coordinator, or specialist liver nurse. Explain how distressed your visit made you, and how you are struggling.????

I emphasise with the long journey, I had to go a week after getting home, and like you it was a 5 hour round trip. Not fun at all!! Annoyingly I had to do it several more times, until lockdown finally meant telephone appointments, one good thing about this awful situation!!

I hope you get some help from someone. Please take care .

XWassX

[Braveheart65 in reply to Wass71]

Nothing up with my kidneys. The doctor was pleasant enough just not that bothered about what I was saying. I’ll phone my GP today, hopefully the practice nurse will return my call. I hate bothering them or anyone else for that matter and I’m normally sensible, not emotional (unless a fig dies in a film!), and certainly not a constant complainer. I hardly recognise myself. Thank god for garibaldi biscuits-my life long answer and cure for all things!!

[Wass71 in reply to Braveheart65]

I love a garibaldi too. I've promised myself no biscuits, cake or chocolate as I've put on so much weight since the transplant. It's so tough denying myself the things I love, but I also hate being so fat!!

My Gp told me, they never mind someone in our situation calling. 4 weeks ago you had a massive operation, they are not going to consider you a complainer , I'd imagine they will know your usual reluctance to call shows how serious this situation is, and I'm sure they will be very sympathetic. My experience has been the GPs are very kind and helpful , as they dont have loads of post transplant patients, so are not desensitised which I think some of the Hepatolgist are.

Good luck getting an appointment. I phoned my GPs on Monday morning, I got through at 8.33 ( they open at 8.30) I was number 26 in the queue!! I didn't wait!

X x

[Bikafella]

Braveheart65 - I'm so sorry you're still suffering with pain and constipation. I mentioned before that you have been very much ahead of the curve in terms of how short your wait for the t/plant was and how quickly you've been discharged after the operation. You have to realise that if you've been on the operating table for around 8 hours your body has had a very large trauma and needs a long time to get over that. To do the physical work on your insides to take out the old liver and put in the new one, your intestines can easily get pushed and squeezed totally out of normal positions. It takes time for them to get back into their normal comfortable position during which your digestive system will be seriously disrupted. Did you have lots of bruising on your body after the operation? That's because the surgeons are physically manhandling you. It all takes time to heal. But it will settle down. The pain will disappear. You do sound from your posts that you're very worried - self diagnosing a UTI and bring told you don't have one should give you more confidence that the doctors are satisfied that you're going through the normal process. Getting better is called recuperation and that takes plenty of time and resting. Do try to find some non stressful time to occupy your mind. If you can do some regular light exercise without lifting or bending down you will notice that things start to improve. I hope this helps you. Sorry for the long message.