Following my last angry post a couple of weeks ago (see here), I feel I should update the situation on Tim. He had a good recovery once he was out of the hospital's "care" and after being seen as an out-patient by the right (senior) consultant. His infection has gone entirely and he has now had over ten days of low readings for everything critical (creatinine and Tacrolimus).
Last week he sent me one of those "really nice to get" e-mails in which he said that "I am feeling much better
than I have since the op and for I don't know how long before that" and then another this week where he added "I just feel like doing more
than I have been doing and thoroughly enjoying it!" I think it's fair to say that my brother is well and almost back to his old self; that makes me very happy indeed.
As for me, I am just very thankful that I have been able to help him; our prayers (and those of several hundred others) have been answered in a quiet but dramatic sort of way, and we praise the Lord for his many blessings to us. I am still amazed at how my own recovery was free from pain and I had no real issue at all in the entire process. It was a surprise to realise that the 100 day mark was reached a week ago, which sounds as though it should be a call for celebration. I have started to lift things and generally be far more energetic, so I have started work on some of the outstanding tasks around the house - all the things that were put on hold just before the op last October. Now I just need the weather to improve!
Friday 31 January 2014
Friday 17 January 2014
Treatment of Transplant Patients
It was pretty clear to me as soon as we arrived at St George's for the operation (now three months ago!) that transplant patients, both donor and recipient, seemed to be very well treated. In the course of my stay in hospital (10am Tuesday to 1pm Friday) there were very few members of staff who didn't look and act as though they really were concerned for me.
Overall, I felt that there was a genuine concern for my health, and that people understood what I was going through. Moreover, it seemed as though they were getting real job satisfaction from my rapid recovery and early discharge. Two or three poor incidents stick in my mind, but I won't let these over-rule the good ones, like lovely little Olga who brought the meals, who was so sweet and caring (and was a contractor!). Then, when I went back to Churchill Hospital for my six week check, they remembered me (from 15 months earlier) and seemed genuinely delighted to hear the news and see me looking so well. I am very happy with this relationship as it bodes well for my future healthcare.
In the same way Tim seemed to be treated very well at St George's, and his initial post-operative recovery seemed to go fairly well. Both of us made the deduction that transplant patients are almost the only ones who leave a renal ward with a prognosis of long-term improvement, and so are a very visible source of real job satisfaction to the staff who care for them. We saw so many poor people who are on dialysis or suffering because they cannot be dialysed, and we appreciated how blessed we are: I have a normal healthy live to look forward to, and Tim's life has already improved immeasurably since the operation. As I've said before, I don't really think that any of us realised just how ill he was; he was in fact so ill that he himself hardly realised how ill he was! (I think that makes sense.)
However, since the surgical team handed his care back to his own hospital (i.e. NOT St George's), I have so say that they have not been consistently as good. As an interested but distant observer it is very hard for me to say precisely what they have done wrong. Things seemed to be going OK-ish with just a few ups and downs with his immunosuppressants, but then before Christmas he got an infection in his throat and had trouble eating or even drinking. Antibiotics failed (twice) to fix this, probably because he was still taking the full dose of immunosuppressants (Tacrolimus), so the senior consultant decided to admit him early in January, with the intention of carefully reducing his immunosuppressants to allow the antibiotics to work. Sadly this senior consultant then took a week off and the ward consultant (plus team) was ABSOLUTELY USELESS. In six days they managed to get him back to a very high creatinine level (peaking at over 200), his blood Tacrolimus was 50% higher than their maximum target, and his C-Reactive Protein (CRP) was sky-high as well, at over 40. They failed to identify what the infection was and, at one stage, the (new) consultant looked in his throat and said "I can't see anything wrong", so Tim (using a mirror and pointing to his inflamed tonsils inside) said "what's that then? It didn't used to be there!"
In addition to these woes, the rest of the treatment wasn't the best. Everyone else in the ward was on low fluid intake, and the ancillary staff couldn't understand that he was exactly the opposite; he would ask for a cup of tea (not being allowed to make it himself) and 30 minutes later they would bring him a small half cup of tea. Also, the nurses were too busy to follow the senior consultant's care plan; antibiotics every SIX hours seems pretty simple but when they found at MIDDAY that his cannula wasn't working it took them EIGHT hours to fit a new one, and another two hours to give the next dose of antibiotic.
I just hope that the senior consultant gets to hear of all this - I'm sure Tim will tell him if he gets a chance - and kicks a few butts. It just makes me so angry. The NHS (quite apart from me!) has made a pretty big investment in his health by doing the operation, and then a bunch of disinterested doctors and nurses risk throwing it away by just not caring for the individual's specific needs. If his new kidney fails in the near future we will never really know if all this has caused it, but it damn sure doesn't help, does it?
Overall, I felt that there was a genuine concern for my health, and that people understood what I was going through. Moreover, it seemed as though they were getting real job satisfaction from my rapid recovery and early discharge. Two or three poor incidents stick in my mind, but I won't let these over-rule the good ones, like lovely little Olga who brought the meals, who was so sweet and caring (and was a contractor!). Then, when I went back to Churchill Hospital for my six week check, they remembered me (from 15 months earlier) and seemed genuinely delighted to hear the news and see me looking so well. I am very happy with this relationship as it bodes well for my future healthcare.
In the same way Tim seemed to be treated very well at St George's, and his initial post-operative recovery seemed to go fairly well. Both of us made the deduction that transplant patients are almost the only ones who leave a renal ward with a prognosis of long-term improvement, and so are a very visible source of real job satisfaction to the staff who care for them. We saw so many poor people who are on dialysis or suffering because they cannot be dialysed, and we appreciated how blessed we are: I have a normal healthy live to look forward to, and Tim's life has already improved immeasurably since the operation. As I've said before, I don't really think that any of us realised just how ill he was; he was in fact so ill that he himself hardly realised how ill he was! (I think that makes sense.)
However, since the surgical team handed his care back to his own hospital (i.e. NOT St George's), I have so say that they have not been consistently as good. As an interested but distant observer it is very hard for me to say precisely what they have done wrong. Things seemed to be going OK-ish with just a few ups and downs with his immunosuppressants, but then before Christmas he got an infection in his throat and had trouble eating or even drinking. Antibiotics failed (twice) to fix this, probably because he was still taking the full dose of immunosuppressants (Tacrolimus), so the senior consultant decided to admit him early in January, with the intention of carefully reducing his immunosuppressants to allow the antibiotics to work. Sadly this senior consultant then took a week off and the ward consultant (plus team) was ABSOLUTELY USELESS. In six days they managed to get him back to a very high creatinine level (peaking at over 200), his blood Tacrolimus was 50% higher than their maximum target, and his C-Reactive Protein (CRP) was sky-high as well, at over 40. They failed to identify what the infection was and, at one stage, the (new) consultant looked in his throat and said "I can't see anything wrong", so Tim (using a mirror and pointing to his inflamed tonsils inside) said "what's that then? It didn't used to be there!"
In addition to these woes, the rest of the treatment wasn't the best. Everyone else in the ward was on low fluid intake, and the ancillary staff couldn't understand that he was exactly the opposite; he would ask for a cup of tea (not being allowed to make it himself) and 30 minutes later they would bring him a small half cup of tea. Also, the nurses were too busy to follow the senior consultant's care plan; antibiotics every SIX hours seems pretty simple but when they found at MIDDAY that his cannula wasn't working it took them EIGHT hours to fit a new one, and another two hours to give the next dose of antibiotic.
I just hope that the senior consultant gets to hear of all this - I'm sure Tim will tell him if he gets a chance - and kicks a few butts. It just makes me so angry. The NHS (quite apart from me!) has made a pretty big investment in his health by doing the operation, and then a bunch of disinterested doctors and nurses risk throwing it away by just not caring for the individual's specific needs. If his new kidney fails in the near future we will never really know if all this has caused it, but it damn sure doesn't help, does it?
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