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Partner day +1 what to expect?

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Kitty Total Reaction Points: 0
Hi,
I'm new to the forum I've never used anything like this but genuinely seeking advice. My partner was diagnosed with ALL the lymphoma variant of it, he's had two months of chemo and then gone into transplant. He's having the high intensity transplant which has consisted of a week of TBI and high dose chemo. His brother was his doner and he had transplant Monday. I'm genuinely seeking advice as to what to expect, doctors have told us a lot but sometimes good to here from other people! I know each person is different. He's very tired at the moment & also got a sore mouth and poor appetite!! I'm constantly worried about him & hate leaving him in the hospital on his own!
Thanks in advance

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  • TonyHTonyH Total Reaction Points: 10
    Kitty

    You're right that everyone's experiences are different and it's hard to convey in a few words here much that's useful. Like your partner I had ALL and also what one nurse described as the "full fat" transplant with 8 sessions of TBI and chemo, although my donor was unrelated. This was in late 2015 when I was 39.

    My wife will probably remember better what I was like! In terms of the initial fatigue I seem to remember that the hardest point was around day 6/7. I started to feel quite significantly better around the time neutrophils started returning, which for me was day 9/10. This was when the mouth sores started clearing up too and my appetite improved, although this will still take time and some food may taste different for a while. (It was also the time when my hair finally fell out!) On the subject of the sore mouth there was a period when I was really struggling to swallow pills. I finally managed to establish that all the drugs could be given IV and wish I'd been more insistent sooner in getting them changed.

    I remember a day or so of really bad bone pain when they first started the GCSF injections, but this quickly passed. By about day 15 I was feeling much better and became very impatient to go home, but I think it's important to remember that it's easy to feel better when you're not doing much. I never imagined at the time that my recovery in general would be as gradual as it has been, particularly as I'd bounced back from the earlier rounds of chemo very quickly.

    Having got home I ended up back in hospital on three occasions, including on one occasion for three weeks. I think this period was psychologically the hardest as the hospital admissions were so unplanned and particularly during the three week admission they didn't know if it was GvHD or an infection. On my last admission, which was 2 months after transplant my neutrophils were back at 0.01 which really panicked us, but fortunately everything was ok and they've been fine since. I guess the point is that the trajectory won't always be upwards, but there can be innocent explanations for that.

    In terms of fatigue I found I still needed naps in the day for a couple of months back home and even walking to the shops and back was a challenge. I felt around 6 months after transplant that I took quite a step forward and managed to start concentrating on building up some low intensity exercise, at first mainly walking.

    The one thing in my recovery which I wasn't told about until 12 months and wish I had been so that I could have managed my expectations was in relation to my iron levels. Due to all of the blood transfusions I had, my iron levels were very high. The only way to get iron out of the body is to take blood out (a process called venesection). This started for me around the anniversary of the transplant, but means it's kept my blood counts low, to the extent that 22 months on from transplant my red count is still just below the bottom of "normal" range.

    I hope this doesn't sound negative because it really isn't meant to be, I just think it's important not to expect too much or for your partner to put too much pressure on himself to get back to how he was before.

    I wish you all the best and your partner for his recovery. My wife will completely empathise with you on the feeling of being constantly worried, I think the whole experience was far harder for her than for me!

    Tony
  • Kitty Total Reaction Points: 0
    Hi Tony,
    Your transplant sounds just like my partners! He to has also not lost his hair at the moment, which he always worries about as thinks it isn't working! He has a flat count now, and mouth has got even worse which he says is effecting him the most!
    Thank you so much for your advice it has been extremely useful, and so glad your doing well!
    It's all the fear of the unknown and what to expect!
    I think I worry so much as I have no idea how to help, and wish I could help in anyway.
    How did you find returning home after hospital? Last time my partner was in for 6 weeks on returning home he suffered really badly with panic attacks for a few days, and they resolved themselves fortunately but worry this long stay in hospital may trigger them again.
    Thanks again :)
  • Dieseldrinker62Dieseldrinker62 Total Reaction Points: 254
    Hi Kitty,

    I'm one of the community champions here. There's not much I can add to what Tony has already said and I had similar experiences with the sore mouth, which was unbearable for a time but did get better so please tell him to hang in there and it will get better and doesn't last long. I had a couple of other setbacks along the way and ended up back in hospital a couple of times which was frustrating but necessary.

    But all of it was short lived and my recovery, though it was slow, is now complete. On the 30th August it will be five years since I was diagnosed with ALL and now I feel like it never happened. I feel as good as I did before it all began.

    It does take a long time to recover but a transplant is a big thing to go through, so he has to be patient and focus on the end goal. Along the way celebrate the milestones, such as the first signs of counts increasing, 100 days, immuno-suppression being reduced and so on. Focus on the positives and try not to let the negatives get to him, because there may be hiccups along the way.

    As you and Tony have said, everyone is different so there isn't a typical example we can give of what to expect. You will see there are some who have had a smooth ride and others who have had difficulties as some of the posts on this forum show. He has to take things at his own pace and push himself as much as he feels he needs to, but be careful not to overdo it or become frustrated if he's not progressing as quickly as he'd hoped - it does take time!

    I hope this helps, but please keep in touch and let us know how he's progressing.

    All the best,

    Steve
  • Kitty Total Reaction Points: 0
    Thank you for your advice it has been really helpful & reassuring! So it's day +5 today and my partner has an extremely sore mouth unable to eat or drink or even take his tablets he can barely talk, it's swollen and full of sores and pain killers aren't touching it he's in agony.
    On top of that he spiked a temperature and is on antibiotics? Has anyone experienced a infection during transplant, it's worrying me the nurses say this is to be expected at this point in treatment!
    It's nice to hear your still doing so well and back to your usual self, that's very positive to hear :)
    Thanks
  • Dieseldrinker62Dieseldrinker62 Total Reaction Points: 254
    Hi Kitty,

    I think infections and temperatures are probably quite normal and it was certainly something that happened to me early during transplant. I was also put on antibiotics and it was soon under control. The monitoring that your partner will be having, with regular checks on his temperature and bloods will pick up any problems straight away so that they can be dealt with, so he really is in the best place at the moment.

    He has my sympathies with the sore mouth as it's something I suffered badly with and was unbearable at times.I wear a partial upper denture and I went for a couple of weeks where it was too painful to wear due to the sores in my mouth. Tell him to hang in there as it will get better but I do know just how it must be making him feel.

    Best wishes,

    Steve
  • TonyHTonyH Total Reaction Points: 10
    Kitty

    I'm sorry, it's been a few days since I was able to get to a computer. It's funny what you've said about your partner and his concern with his hair not falling out, I was the same, I was concerned I wasn't getting the right dose of medicines!

    I'm really sorry to hear about his mouth, it is horrible. I remember coming under a lot of pressure to have a feeding tube put in, but I stubbornly refused. It just felt one step too far. It will gradually get better and I remember a lot of very plain, soft food and things like yoghurt drinks. M&S used to do one with honey in that was very high in calories too! I did lose a lot of weight through the process as a result but once back home and able, my daily walks to the bakery to buy doughnuts to put the weight back on were one of the positives of my recovery! Anyway, I hope by now the mouth is improving and you've managed to get the medications converted from pill to IV.

    I also had an infection in the early stages and I think this is very normal. I actually had several over the course of the first few months and I note what you've said about panic attacks on returning home and I think the fear of infection and when to go back to hospital must be part of that. I never had a problem going home, I think because my kids at the time were 6 and 4 and I was just always so pleased to be home with them. My wife on the other hand found it really hard (& I think she's still a bit emotionally scarred by the experience), mainly because she felt the pressure of monitoring me and judging if and when I needed to go back in and also she was desperate about my interaction with our children. The doctors had advised me to keep my distance from them but that was never going to happen and so things like when my son sneezed in my face about 24 hours after I was back from hospital tended to tip her over the edge!

    If this is a concern and something causing him to panic, I found a thermometer online that I could wear on my arm with a small contact patch into the arm pit. It constantly monitored my temperature and connected wirelessly with a little base station that showed my temperature. The best thing was you could set it to alarm if the temperature left a certain range. I used it occasionally overnight when I was on my own just for peace of mind. One thing I would reiterate about infections when he's home is around the protocols in A&E if you have to go back in. You may have to be really firm with them to get antibiotics into him asap. I remember one occasion on Boxing Day when I was in Watford General (my local hospital) with a temperature. I'd got UCH (my transplant hospital) to ring them in advance of my arrival and tell them what I needed but still they wanted to go through their normal procedures before giving me antibiotics. My wife had to do a lot of chasing to get to the right people and it was only when my temperature really spiked that they finally did it.

    I really hope he's doing better now. It can be a very isolating experience and whilst I found the doctors and particularly the nurses were great for information, the fact that all of the patients are in separate rooms meant you never got a peer group to share experiences with.

    Tony

    Steve, it's great to hear that you feel like you're back to how you were before now. I'm approaching two years and it's mildly frustrating how slowly my fitness is returning. I've never been known for my patience!
  • Dieseldrinker62Dieseldrinker62 Total Reaction Points: 254
    Thanks for these posts Tony, they are really useful to patients at earlier stages than us and contain some really good advice.

    I agree with you that the soft foods, nutritional milk shakes and yoghurts were good and at one time were probably my staple diet, particularly when I got the sore mouth. I really struggled with anything that needed chewing or felt abrasive in my mouth.

    Appetite will fluctuate from day to day but anything you can get down (and keep down) will help. I also resisted the feeding tube and the threat of one being used was the best motivation I had to try and eat something. I also lost a lot of weight, but I've got it all back and a bit more since my transplant and have set myself a target to get back to the 99Kg I was when I was first admitted (6Kg to go!)

    Infection wise I didn't really have any major problems apart from the fungal infection in my mouth in the early days. I guess when you get home you just have to be sensible and avoid contact with people who have coughs and colds. Be aware of your vulnerability until the counts start to rise, but that shouldn't mean you need to avoid contact with family and children in particular.

    I took the precaution of buying an electronic thermometer (the ear probe type which had been used on me in hospital) and it gave me some comfort by checking morning and night. It didn't take long though to relax a little and I got to a stage where I would only check my temperature if I felt a little bit under the weather. It hasn't been used since about a year after my transplant now!

    For a long time my energy levels were so low that I couldn't walk up the stairs without either crawling up on my hands and knees or dragging myself up with the handrails. I lost a lot of muscle off my legs and that took a long time to get back but 9 months after my transplant I climbed Snowdon for the first time in my life which was a bit more challenging than the stairs!

    One of the strangest things was driving again as I was driven around by my wife for the best part of 6 months. Going out again in my car for the first time on my own felt very alien.

    Yesterday was 5 years to the day since I was told I had Leukaemia and whilst there are parts of it I remember so well, it also feels like such a long time ago now. Tony, you will get there too and Kitty, so will your partner. Just keep that goal in your minds and focus on putting all this behind you.

    All the best,

    Steve
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