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Dads blood transfusion...scared

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User
Posted 15 Jun 2016 at 22:08
Hi all,

Dad in hospital at the moment and I'm feeling very scared now. He got very breathless at the weekend and went from independently mobile to struggling to stand and transfer over night. His bloods were tested and all counts are low including haemoglobin which was extremely low. He has had 3 bags (units) of blood. I know what we are dealing with in that his condition is incurable and at this point it's about symptom management. Has anyone found transfusions helpful for any length of time? This roller coaster we are all on is awful but I still want to stay on it for as long as I possibly can.
User
Posted 17 Jun 2016 at 20:19

It's a pity you caught sight of the notes but in a way it's telling you that you are keeping things as normal for your dad as you can so try not to dwell on what you read as you and the family being negative.

You are dealing with the situation in your own way and doing it brilliantly. Perhaps the GP just isn't used to his patient's family being as strong as you are all being.

He hasn't had you in his surgery breaking your heart in front of him has he, you are saving that for your private moments.

You do what you have to do, when you have to do it, to get yourself through this without adding to your dad's distress. It's tough on you all but you are managing it.

You are not doing it all wrong !!

Hang on to that blanket and know that we are all wrapping it round you in our thoughts

We can't control the winds - but we can adjust our sails
User
Posted 16 Jun 2016 at 05:46

Hi Qwerty, sorry that your dad is at this stage but I am sure that he would not be given blood unless they thought it was useful and necessary . I wish you well, be strong and positive .

Best wishes Chris/Woody

Life seems different upside down, take another viewpoint

User
Posted 16 Jun 2016 at 08:51

Sorry that dad is having top go through this Qwerty.

I'm sure a blood transfusion will boost him for a while. I hope somebody who has knowledge will be along to offer more support.

We can't control the winds - but we can adjust our sails
User
Posted 16 Jun 2016 at 21:41

Hi Qwerty


Hopefully he will be feeling a bit better in a day or so. My husband was transfusion dependent for the the last 5 - 6 months. At first it was just his haemoglobin that was low but towards the end it was his platelets too. It was assumed that he had spread to his bone marrow.


The transfusions generally bought him good weeks - it averaged one good week for each unit of blood but for him the haemoglobin didn't go up as much as expected after transfusions. So hopefully your dad will get a longer interval. He usually felt better one to two days after the transfusion.


It is very scary and a real roller coaster. Thinking of you


Rosy

User
Posted 17 Jun 2016 at 08:56

Glad you'v gained comfort from belonging.

Each day is a bonus day, one to be cherished and thankful for as I'm sure you are

We can't control the winds - but we can adjust our sails
User
Posted 17 Jun 2016 at 09:31
Hello querrty
This must be so frightening for you (and dad), I do think that once transfusions are needed then you have turned a corner that isn't welcome. All you can do is love him, give him as many good days as he can cope with, give him hope and enjoy your time together. There is no time frame that comes with this but it is a marker for difficult times ahead I think. I know it's something that I dread, my hubby goes from 9.5 (in the old method) to 11.5 and is ok on that. I do dread the day it drops below and he needs a transfusion. On the plus side it can really boost the person and give them more quality of life. I'm sorry if I come across too gloomy, I'm a realist and I think it's important to know what you are facing, you can then decide whether to face it or not.

Hugs from our forum brethren, maybe it's time you had the comfort blanket for a while. In case you don't know, this is a virtual blanket that we share around the forum between those who need comfort. It's full of all the love and hope and comfort people here share and boy, does it give you comfort.

Love
Devonmaid xxx
User
Posted 17 Jun 2016 at 10:18

Sorry to read this qwerty. Has dad applies for the benefits he is now entitled to as he moves into this next stage? The Macmillan nurse or local hospice staff should be able to advise you on paperwork etc - the government gives this money to help pay for the equipment you might need and/or for carers (or family mrmbers that need to stay home with him) further down the line.

"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
User
Posted 17 Jun 2016 at 21:22

In my own experience a lot of the conversations with doctors were 'woolly' and they just hinted that things weren't going well. Perhaps your GP was wondering if you'd picked up the hints? Perhaps he should also concentrate on keeping his notes together - did he actually leave them at the house? Not very professional to leave notes around especially if they say things that he didn't discuss with you!


You are doing great - don't waste energy on wondering what other people think. You just need to concentrate on your dad and taking care of yourselves right now.


Take care


Rosy x

Show Most Thanked Posts
User
Posted 16 Jun 2016 at 05:46

Hi Qwerty, sorry that your dad is at this stage but I am sure that he would not be given blood unless they thought it was useful and necessary . I wish you well, be strong and positive .

Best wishes Chris/Woody

Life seems different upside down, take another viewpoint

User
Posted 16 Jun 2016 at 08:51

Sorry that dad is having top go through this Qwerty.

I'm sure a blood transfusion will boost him for a while. I hope somebody who has knowledge will be along to offer more support.

We can't control the winds - but we can adjust our sails
User
Posted 16 Jun 2016 at 21:41

Hi Qwerty


Hopefully he will be feeling a bit better in a day or so. My husband was transfusion dependent for the the last 5 - 6 months. At first it was just his haemoglobin that was low but towards the end it was his platelets too. It was assumed that he had spread to his bone marrow.


The transfusions generally bought him good weeks - it averaged one good week for each unit of blood but for him the haemoglobin didn't go up as much as expected after transfusions. So hopefully your dad will get a longer interval. He usually felt better one to two days after the transfusion.


It is very scary and a real roller coaster. Thinking of you


Rosy

User
Posted 16 Jun 2016 at 23:26

Thank you Rosy for sharing your own experience. It is so helpful to hear from others going through or have gone through the same. It really is much appreciated. Dad got home this evening having been given 3 units of blood the previous day (presumably 1 bag = 1 unit). All his counts were low including platelets. Haemoglobin was 69. Today a doctor told us that all his counts were normal now, haemoglobin up to 102. In himself he is feeling a little better I think. He certainly appears better than day of hospital admission when he couldn't put one foot in front of the other. He is now mobile again albeit slowly and with a walking frame. He has a hospital bed downstairs now and we have lots to do tomorrow in terms of organising district nurse visits, a commode, bathroom aids and maybe care. I can't stop too long to think about all that has changed in such a frighteningly short, few months and will instead tackle each day as it comes. Hopefully the transfusion effects will last a wee while. I am very aware there is no magic bullet for advanced prostate cancer and I have thought about worst case scenario from the day I learned dads diagnosis. So I come to this forum for strength and a little bit of hope so that I can keep going another day. You have helped me. Thank you.

Edited by member 16 Jun 2016 at 23:26  | Reason: Not specified

User
Posted 17 Jun 2016 at 08:56

Glad you'v gained comfort from belonging.

Each day is a bonus day, one to be cherished and thankful for as I'm sure you are

We can't control the winds - but we can adjust our sails
User
Posted 17 Jun 2016 at 09:31
Hello querrty
This must be so frightening for you (and dad), I do think that once transfusions are needed then you have turned a corner that isn't welcome. All you can do is love him, give him as many good days as he can cope with, give him hope and enjoy your time together. There is no time frame that comes with this but it is a marker for difficult times ahead I think. I know it's something that I dread, my hubby goes from 9.5 (in the old method) to 11.5 and is ok on that. I do dread the day it drops below and he needs a transfusion. On the plus side it can really boost the person and give them more quality of life. I'm sorry if I come across too gloomy, I'm a realist and I think it's important to know what you are facing, you can then decide whether to face it or not.

Hugs from our forum brethren, maybe it's time you had the comfort blanket for a while. In case you don't know, this is a virtual blanket that we share around the forum between those who need comfort. It's full of all the love and hope and comfort people here share and boy, does it give you comfort.

Love
Devonmaid xxx
User
Posted 17 Jun 2016 at 10:18

Sorry to read this qwerty. Has dad applies for the benefits he is now entitled to as he moves into this next stage? The Macmillan nurse or local hospice staff should be able to advise you on paperwork etc - the government gives this money to help pay for the equipment you might need and/or for carers (or family mrmbers that need to stay home with him) further down the line.

"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
User
Posted 17 Jun 2016 at 19:58

Thank you for your kind replies everyone and the comfort blanket. Life is very strange and stressful just now and it helps to come on here. I spoke to the oncology nurse specialist today as dad was due his firmagon injection and I thought it might be stopped now. However, the nurse said that it should continue along with 4mg dexamethasone. The gp came out to administer the injection. The oncology nurse has suggested dad attends the local palliative care unit day hospital. This will establish links and blood transfusions can be given there as a day patient. We all think this is a good idea. The nurse specialist popped along to see dad when he was in hospital earlier in the week so he is fully up to date with dads current state of health. When the gp visited earlier he left some notes (perhaps accidentally) and I see that it is written down that it is not sure if family have grasped the disease progression. I feel quite upset because of course we have! But what are we supposed to do - just say, right that's it, take him away! All we want is for dad to be as comfortable as possible for as long as possible and we are trying to be as normal as possible for what else can we do? I cry plenty of tears but if we dissolve completely all day long then how can we continue like that? Oh dear, I feel like we are doing it all wrong now. I think best try to forget what I saw in the notes.

User
Posted 17 Jun 2016 at 20:19

It's a pity you caught sight of the notes but in a way it's telling you that you are keeping things as normal for your dad as you can so try not to dwell on what you read as you and the family being negative.

You are dealing with the situation in your own way and doing it brilliantly. Perhaps the GP just isn't used to his patient's family being as strong as you are all being.

He hasn't had you in his surgery breaking your heart in front of him has he, you are saving that for your private moments.

You do what you have to do, when you have to do it, to get yourself through this without adding to your dad's distress. It's tough on you all but you are managing it.

You are not doing it all wrong !!

Hang on to that blanket and know that we are all wrapping it round you in our thoughts

We can't control the winds - but we can adjust our sails
User
Posted 17 Jun 2016 at 21:22

In my own experience a lot of the conversations with doctors were 'woolly' and they just hinted that things weren't going well. Perhaps your GP was wondering if you'd picked up the hints? Perhaps he should also concentrate on keeping his notes together - did he actually leave them at the house? Not very professional to leave notes around especially if they say things that he didn't discuss with you!


You are doing great - don't waste energy on wondering what other people think. You just need to concentrate on your dad and taking care of yourselves right now.


Take care


Rosy x

 
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