Platelets

[rose1999]

Just an update.  Dad's platelets have now risen to 29 with the IVIG which is a positive step although not as high as the Drs had hoped.  They are very concerned about his heart and will have a look this week to see if there is anything that can be done to help - please pray that they can help him.  All we want is for him to be able to get home and get about a little, not run marathons or anything, just walk around the bungalow without getting tired.  Yesterday he was sitting in a chair by his bed but getting back into bed meant he needed to go back on oxygen and he was totally shattered.  Many of you will know how hard it is to watch, but being there for him is all we can do, I wish he were nearer and we could spend more time there, we do what we can.   Thank you all for your love and support 

[monrein]

I'm so sorry your poor Dad is having such a struggle, Rose.   

[kidney4traci]

I am so sorry to hear your dad is still having such a terrible time.  He is so lucky to have you there still, I would imagine that is a great comfort for him.  Prayers and hugs to you, surround yourself with love and know you are covered in prayer sweetie!   Arise and shine for your light has come, and the glory of the Lord rises in you. 

[nursewratchet]

sorry that ya'll are having to go through this.  You need some Prayers, and some Good Luck.  Take care of yourself as well.   

[rose1999]

Dad has now been told he has heparin dependant antibodies.  We can't find anyone who can explain it - I'll keep trying to get to see the hematologist, but in the meantime I've posted some questions on the link below.

http://ihatedialysis.com/forum/index.php?topic=12180.msg209267#msg209267

If anyone knows anything about this condition could they please let me know.  Thanks so much.

[monrein]

http://www.argatroban.com/argatroban_aboutHIT.htm

Here is a site with some info, Rose.  It's a bit technical but might provide a starting point for you to formulate some questions for the doctors.   

I'll try to find more later but have to pass the computer over to my husband right now.

[rose1999]

Thanks for the link Monrein, I appreciate your help. What I can't find anywhere (and I will ask at the hospital when I get the opportunity) is does it mean he can't have heparin? The Sister (there were no Drs as it's the weekend!) said it does not mean he is allergic to heparin and he can still have it.  If that is correct then why does he have to carry the card, there is no explanation with it other than he has an unusual blood condition!  Trying to get hold of the right person to ask is hard, but I will persevere, in the meantime if anyone has any knowledge that they can share then I'd be very grateful.
Thanks again Monrein 

[pelagia]

Hi Rose, it sounds like maybe they are making some progress and getting your dad stabilized.  I hope things will continue to move in the right direction.   

[Ken Shelmerdine]

Rose I'm so sorry your Dad is going through all this. I've only just read this thread as I havn't logged on for a week or two. How awful that he's had to suffer one thing after another. My thoughts and best wishes are with you and your Dad. 

[rose1999]

Thanks again everyone.   
They had now raised Dad's platelets to 80 and have said he can come home today or tomorrow (weather permitting, we have a LOT of snow).  He has to go once a week to see the hematologist, which will mean 4 trips out each week (inc dialysis) I am going to see if we can arrange the hematologist visits for a Mon, Weds or Fri - at the moment they have offered a Tuesday! At 80 and being as poorly as he is it's too much, particularly in this weather.  His heart is very weak and they still say ther's an 80% chance of a fatal heart attack, but because of all these blood issues they can't do anything except try to keep it at bay with medication.  It has been so hard, trying to keep going to work (I'll be made redundant at end March and can't afford to miss the redundancy pay) and travelling 3 hours round trip daily, it's also a strain for Mum (78) but of course it is worse for Dad, all the tests, being so far from home, 3 patients die in his bay while he's been there, oh it';s been awful and I hope we don't have to go through this again, although I fear it's the nature of the beast and we will.
Bless you allfor your support throughout this, I don't know how I'd have managed without you. 

[Bajanne]

Oh, Rose, I am so sorry to hear all that you have been going through.  I saw the subject 'Platelets' and thought it was just something informative and never checked it before.  Please know that my caring thoughts and prayers are with your dad, you and your family.   

[pelagia]

We're here for as long as you need us Rose . 

Something just made me wonder this - do you have any siblings?  It must be incredibly hard to handle this on your own.   

[rose1999]

No Linda I'm an only one and my husband died 5 years ago (this month) so it is very hard to cope with no help, but there is no alternative and Mum & Dad have always been there for me, now it's my turn to look after them ...........................but heck it would be nice if my turn took a break once in a while 

Thanks Bajanne - it was a silly title really but with all that was going on it was the best I could think of, I did try to amend it ater to Platelets - Dad is in Hospital (or similar) but it didn't work!!

I appreciate everyone's support. 

[pelagia]

If I could stop by with a casserole or something that would help a little, I would.  You definitely deserve some help and a bunch of hugs.   

   

[rose1999]

Bless you Linda 

Dad is now home, he is very weak and his heart is in a bad way - we have to take each day at a time.  unfortunately he has to travel to dialysis 3 days a week (nearly an hour each way) and there's nothing I can do about that, he isn't a candidate for home hemo with all his other problems and there is no unit nearer.   He can't move to live nearer the unit - which would be a massive step anyway - as he would be too far away from me and I can't move as I need to work and anyway this area is our home and it's where our friends are.  He also has to go one day a week to see the hematologist and we are trying to get that on a dialysis day to save another journey for him, but those of you who know the UK NHS will understand the lack of communication between different specialties.

Thank you all for listening to my worries over the last 3 weeks, I fear this is only the lull before the storm breaks again but we will make the best of every day. Love to you all 

[pelagia]

Okay, maybe now you have to go into the one day at a time phase, because otherwise it is too easy to be consumed with worrying.  I am really sorry that your dad is dealing with so many issues.  Don't forget to grab some sunshine when you can and also a deep breath every once in awhile. 

[rose1999]

You are so right, I have to keep stopping myself worrying about tomorrow, next week, next month..... and concentrate on today -  I can do it and I must! 

To add to all our woes we now have such a lot of snow and more forecast, the thought that Dad may not be able to get out to go to dialysis (which is nearly an hour's ride away) is frightening but I can't control the weather so I must try to control my worrying 

I do yoga (although don't get time to go to classes just now) and I try hard to use those relaxation techniques, particularly when I wake in the middle of the night and can't sleep............ we'll get there, I just wish sometimes we could have a bit of an easier time.  Bless you for caring 

[pelagia]

We sometimes get bizarre weather here, like ice storms and hurricanes, that put the power out for more than a week or make it difficult to travel.  In the past I mostly thought of those events as an inconvenience (well, except for the hurricane that flooded my house), but now I worry about every dialysis patient and every other person who requires health care and might have trouble getting it.

I just had a thought - Does your town have any plans in place to help the ill or elderly during these sorts of weather emergencies?

{{{hugs}}}

[rose1999]

Yes I too used to think it was fun to have a day off work, now I too worry for Dad and all others like him, dialysis opens your eyes doesn't it!  We live in a very rural area, just about 150 inhabitants spread over a large area - but even our local town (pop 12,000) has nothing to help anyone that I know of.  However I have been i touch with our local council and they are doing their best to keep the roads open for Dad, but sometimes it just may be impossible.  I could do with Sluffbunny  and his snow plough!
Linda you are such a kind and caring person and I want you to know I am proud to call you a friend.