Heart and lung transplant - does anybody know what we should expect?

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My SIL was taken in late last night for a Heart and Lung transplant. She has really bad COPD and had been on the list for a little while, but I did not expect it to happen so soon. Of course we are delighted, as well as concerned, but I now feel so unprepared to support her, DH and the family through this.

I do not want to burden my niece with too many questions right now and we live about 3-4 hours away, so it is difficult to find out what is going on.

Does anybody know how long things should take, and what about recovery?
What are the chances of failure and then what next?
How long will she be in hospital for?
When would we be able to visit?
Should we visit or leave her to gain strength?
Can we take DS, who is 3?
What can we do to help?

I will not be able to come on here too much today, as I am at work, but will try again later.

Also, there is the thought that somebody else has lost somebody for this to happen, which I am trying not to think about too much.

lots of personal experiences here

I have had 2 kidney tansplants so know about that.The actual operation can take up to 15 hours and the ercovery does depend on the individual and how close the match is as this determines how many and what drugs she will be on.She will probably need to avoid being in touch with anyone who may have any sort of infection etxc.Misdees had a heart last year and is doing well i will keep bumping this as she knows lots and will be able to help you.I am thinking of her and sending good vibes a transplant is a gift and a great new life xxxxxxxHTH

Thank you all so far. noddyholder - 15 hours, wow, I had not realised it could be that long. I do hope you are keeping well and enjoying life.

For all we know, SIL could still be in the operating theatre. We have still not heard anything and are trying to find out how things are going. I can hear by DH's voice how worried he is, but cannot say much as he is at work.

I have discussed it with her a few times and I know she is concerned not only by the operation itself, but also by the responsibility of having to take this new opportunity on. I think she has been unwell for so long that she has got used to that role for herself. The idea that she may have to start being healthy again is a bit overwhelming. I am not sure if that makes sense, but I can sort of understand her, as it is a serious step.

Only just received a brief update from dh - apparently SIL had to wait until 9am to go in for the operation itself. They are only doing double lung transplant - I was unaware that they decided a few weeks ago that heart was not necessary after tests.

We have been told it will be taking 8 to 10 hours, so we should hear very soon how things have gone and how she is doing.

Unfortunately, the person who was getting the heart has not been able to have the operation, due to some technical issue. .

Thank you all for your wishes. I know she would/will be touched!

I used to work at one of the centres that do heart and lung transplantation a few years ago,brain is a bit rusty but will try to recall as much as possible!
The main hurdles patients face are problems with infection and rejection. They are very closely monitored in the first year post surgery, with follow up dropping to six monthly in year two.
Post op recovery recovery depends very much on the individual, and how debilitated they were before the op. In the "fitter" patients they can be off the ventilator within 24hours and out of ITU within a couple of days, however it does vary from person to person. A lot of the post op stay is familiarising the patient and family with all the new medications and what signs and symptoms they need to look for in case of problems. Also most places won't discharge until the pt is able to get up & down stairs so it can take time to regain that level of fitness
Visiting - I would talk to the ward staff and get their opinion - they can talk to your SIL and see how she is feeling, also the risk of infection is very high, as initially they are on very high doses of drugs to suppress their immune system, so would avoid taking any little ones in, just in case they are harbouring anything.
Help can come in the form of home cooked meals for your niece, helping out with washing & ironing and post discharge, acting as a taxi service for hospital appts would be useful. It is a hugely emotional time for everyone involved - I'm sure you don't need me to tell you that, but it will take time to work through the whole range of emotions that she and her family will feel. Sorry for the essay!! Let me know if there's anything else you need to know.

monkeyme - Thank you, that is very helpful and seems to mirror very closely what is going on. It is just nice to get some help and suggestions in such an unfamiliar area.

We got news last night and this morning that it is all going very well so far. SIL had very little bleeding and they started to reduce the anaesthetic already last night. She was awake this morning, although not really responding and they are planning on taking her off the ventilator later this morning. All sounds really good.

With regards to the ideas of help, all those are great, but we live about 3-4 hours away. I will try and think of something similar, like maybe having shopping delivered and having a hamper sent, either to niece or SIL when she is home again. DH and I are hoping we can go and visit weekend after next. We will just have to see with ds - it may mean one of us stays outside with him while the other goes in.

We are all still feeling quite shellshocked - I am just amazed that it has all gone so fast, when we were settling in for the long haul on this one.

Thank you all for your wishes. Great to know that I can ask for advice here.

Morning!

my dh had a heart transplant last summer, and i know a few people who have had lung transplants as well due to CF, LAM or COPD

She is doing really well to be coming off the vent, but do be aware that it can be one step forward two steps back at this early stage.

Some people get moved from ITU to HDU really quickly then onto the normal transplant ward within days, some can be in ITU for a while.

If she feels ok with you visiting once off ITU/HDU (which is usually restricted to just family anyway at this point), then do go in and see her.

Remember flowers arent allowed on the wards.

Regarding your ds visiting, dd3 was 2.5years old when dh had his transplant, and we didnt take any of the chidlren in untuil two weeks post transplant when he is mostly tube and drip free, due to not wanting to scare them, plus they also fell ill within days of the transplant as well, so we werent allowed in.

It can be a long road to full recovery, one year on and dh isnt up to full strength yet, is still have cardiac rehab/physio each week and takes things at a slower pace than normal.

I know Emily went to work recently, a year after a double lung transplant and is loving it.

Check with hospital regarding any dietry restrictions, there are some things which dh isnt allowed (think pregnancy type diet regarding cooking) plus grapefruit as it interacts with some drugs.

And remember to use the hand gel on entering wards and follow all hygeine rules.

HTH.

ps what hospital? dh was transplanted at harefield.

Misdee - Hi. I followed your dh's story a little last year, but that was in my early mnetting days (as opposed to lurking).

Thank you for your post - some things to think about and remember there.

Do you think balloons are a good idea, or just too naff? I have sent a card from us, but I want to send her something, maybe next week, to let her know we are thinking of her.

I will remember to mention your dh to sil when I finally get to talk to her. She will love the story and hearing about his progress.

She is at Papworth in Cambridgeshire. They have been great throughout and have really taken good care of her.

But she is not very good at taking care of herself, and we have often found that she has a terrible diet - subsisting on crackers and those pink crab sticks. But she is more than old enough to make her own choices. However, I am going to insist we visit every so often so I can cook for her - that has always been my way of taking care of people, my italian blood I suppose. My niece is doing a fab job taking care of her, but she has two young kids and it must be very tiring for her as well.

Anyway, I must get back to work, but I will post progress on here, because it is nice to tell somebody, IYKWIM.

balloons etc would be nice once she is back on the ward.