I Hate Dialysis Message Board
Dialysis Discussion => Dialysis: General Discussion => Topic started by: rose1999 on January 15, 2009, 12:14:38 AM
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Dad has been taken into hospital, he has bruises all over his face, head and neck, his lips are swollen, his mouth full of blood blisters and he has pin prick type blood spots all over his body. His throat is so sore he can hardly sip water. This has come on very suddenly. The A&E (ER) Dr says his blood results show low platelets and they will give him some as soon as they can get them (a 3 hour wait for them to arrive) but has anyone any experience of this? Will it get better? How long does it take? What can we expect? If it gets better is there anything we can do to stop it happening again.
Any thoughts welcome, also prayers for his recovery also welcome, he's 80 and it's all becoming a struggle for him. Thanks and bless you all for being here for us. Rose xx
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A :grouphug; and a prayer for the both of you.
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If he has low platelets, that's called thrombocytopenia. I found this on the web:
http://www.mayoclinic.com/health/thrombocytopenia/DS00691
It can arise from a number of different causes. The symptoms you mentioned seem consistent with this condition.
I hope they get it figured out quickly, Rose.
:grouphug;
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Yes, I also have low platelets from still unkown cause. You father's must be very low from the symptoms you described. I would guess below 20 or even 10. When platelets go below 10, there is a risk of internal bleeding althoug rare. Mine have gone that low with bruising and the blisters in my mouth. I've needed transfusions on more than one occasion. A transfusion of platelets are necessary when they get too low and that usually helps to restore his normal count. It may take a while and it may take more than one transfusion. Your father probably doesn't feel bad but I know it looks bad. Hopefully they will find the cause of his low platelets but they will most likely monitor them for a while until they return to normal.
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Thanks for your comments and support. Dad has had a platelet transfusion overnight and it raised his count from 1.5 to 6 - yes it is that low! I didn't know what it should be but they said they had hoped it would raise it to 30. They now say his body is attacking itself and they have sent bloods off by taxi to a specialist hospital about 150 miles away. I'm getting scared now, please keep him in your thoughts.
Thank you
Rose
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:grouphug; Rose, we will keep your Dad in our thoughts and prayers. Hope they get it figured out soon. :cuddle;
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Wow. that is as low as it can get. No wonder he looked like he did and thank God there were no internal complications. Hopefully, some transfusions will help the situation and he will have no further events.
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Oh Rose I am so sorry to hear about your dad, I am glad he received the platelets, you are both in my thoughts and prayers :grouphug;
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Thank you again for the support, it does mean a lot when I'm sitting here alone and scared and you guys are so good at it :grouphug;
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Take care of yourself while you take care of him. You cannot help him if you are down and out. I hope the figure things out soon. :grouphug; :grouphug;
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I'm hoping the doctors can find something to help your Dad, Rose. The poor guy, the results of low platelets sound painful and very worrisome. All my thoughts are with you as you try to find a solution. :cuddle;
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Oh Rose, I hope they figure it out soon. I hope you are doing okay through all of this stress. Don't forget to breathe deeply at least once or twice a day. I am sending some love to you and your dad! :grouphug;
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Sending you lots of love and good wishes. Give your Dad a gentle hug from me :cuddle;
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My platelets tend to "crash" once a year and they give me 2 units and I'm good to go again. I never feel bad or hurt, just very tired so I'm hoping your dad doesn't feel as bad as it appears. You take care of yourself and know that we are all here for you.
:grouphug;
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lots of love and prayers for you and your Dad
:grouphug;
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I hope they figure everything out soon. :grouphug; You guys are in my prayers
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So sorry to hear about your dad, Rose. I am hoping a solution is found quickly.
Please keep up updated, and I will sending positive thoughts your way. :cuddle;
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Oh Rose! I am so sorry to hear about your Dad. I hope they get this figured out and get him back on his feet soon. :cuddle; :cuddle; :cuddle; :cuddle;
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I don't have any more news, we are waiting for him to be transferred to the main renal hospital in the area now (a 3 hour round trip to visit but the best place for him). I just wanted to thank you all for your caring thoughts. I will update later today when I know more.
Thank you all SO much. :grouphug;
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I am glad to hear that they are sending him to the renal hospital, but those long trips to the hospital will take their toll on you. I'll be sending as much positive energy in your direction as I can muster. :cuddle;
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Rose, :cuddle; thanks for the updated. We are thinking about you and your Dad. :cuddle;
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I'm away for a few days, and I come back to check in --- and the first thread I read is this one about Rose's dad.
First, Rose dear, I'm sorry you're having to go through this on top of everything else. I'll put you and Dad at the top of my prayer list.
Secondly, let's talk about platelets. Marvin has a disease called ITP (I'm not going to spell it right -- but here goes -- idiopathic thrombocytopenia purpura). He was diagnosed with this in 1986. His body makes platelets and the normal number (determined through extensive bone marrow tests), but there's something in his body that also destroys the platelets soon after they're made. We don't know what it is in his body that destroys them (hence, the "idiopathic" label). We've been living with this for years.
The normal range of platelets (so we've been told) is between 150,000 and 400,000. When Marvin was first diagnosed, his were at 4,000 ! The doctors put him in the hospital on strict bedrest; they said he could nick himself shaving, get a serious paper cut, etc., and he'd bleed to death (obviously, this didn't happen). Then they said his internal organs could start seeping and he'd bleed to death internally before we knew what was happening (didn't happen, either). I didn't tell you this to scare you -- rather, different bodies can handle lower platelet levels.
So, what kinds of treatments has Marvin had (in the early years)? Prednisone works wonders to boost his platelet level. He's also had whole platelet transfusions (only keeps the level high for about 7-10 days -- I guess when his body figures out there's extra platelets floating around inside, it destroys these transfused ones, too). He's had IVIG (immunoglobulins) transfusions -- works about like the whole platelet transfusions , but lasts a week or so longer. In 1987, the doctors decided Marvin's spleen was the culprit -- they said his spleen was trapping the platelets and not returning them to the rest of his body. Guess what they did? They took his spleen out. Here he is with an incision from right between his breasts all the way down and around to his left hip bone. He had 80 some staples (he has a big tummy) ! The morning after his spleen was removed, his platelet count went up to almost a million. The next day, it was down again to 30,000. Try telling a man who's had such a major surgery with so many staples still in him that the surgery didn't work afterall. Then, one doctor suggested an experimental drug. He said it would probably reduce our chances of having children by 99%, but it would cure the platelet problem. We had been married for about six months, but we decided to go ahead with it anyway. Even though it made future children not possible, we thought it would "save" Marvin. To us, it was worth the trade-off. After six rounds of that experimental drug (and to save me, I can't remember the name of it now), the doctors said that didn't work either -- Marvin still had low platelet counts. (But, we never could have children :'( .)
Marvin has seen every hematologist at Duke Medical Center (big research hospital in Durham, North Carolina). There is no answer. There is no cure. About 1990 or so, one doctor just told us we'd have to learn to live with the low platelets. And, that's what we've done.
Now, Marvin's platelets usually run somewhere in the 30,000 to 50,000 range (still quite low). He bruises very, very easily; however, he's always used heparin in his dialysis treatments (go figure that one out -- you'd think with low platelets he wouldn't need an anti-clotting medicine, but he does). The hematologists always tell Marvin, "Try not to get cut or hit." Duh! Marvin says, "I'd do that anyway, even if I didn't have low platelets."
When he had his transplant, his platelets were at 30,000. I questioned the surgeon about it, but he said, "I'm going to have him open, and I can stop whatever bleeding occurs." If we know Marvin's going to have some type of surgical procedure, we always request a prednisone taper (takes a lot for a few days, a little less for a few days, less, less, less, until he's completely off them after about 10 days); this seems to work as a "band-aid" fix -- it bumps the platelet level up temporarily, but it never lasts for an extended period of time. (This is the only treatment he's had in probably the last 18 years.)
Since his transplant hospital (Duke) is a research hospital, Marvin's participated in hundreds of blood studies and things like that. When he developed ESRD, one doctor was especially interested in finding a link between his ITP and his ESRD, but she could never prove the two were tied to each other. I (in my amateur research), do think the two must be linked somehow.
Rose, it is something Dad can live with. Marvin's lived with it for almost 23 years now. The low platelets don't affect how he feels. He still shaves with a straight razor (though I made him use an electric one for a couple of years because I was so paranoid about him nicking himself). When I pull his needles, his bleed time is about 10-12 minutes; we're told that's "average."
Hang in there, Rose. I'm thinking about you. If I can help you, just let me know.
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Rose, my thoughts and prayers are with you all. He is lucky to have you with him during this. Glad they are raising his count, my goodness that sounds low! See how quick it went to 6? Then 12, 18...30!!!
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Petey, my brother has ITP. Didn't know anything about it until one day his wife asked why he was so bruised and why did he have thousands of pinpricks all over him. We almost lost him that day. Now, 2 years later, his level never goes over 25,000 even with all the meds, etc. I worry about him.
Rose, how is your Dad doing today? Tell him he has lots of people who care very much for him :cuddle;
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Thank you all and particularly Petey for allthat information that has helped me feel a lot more hopeful, bless you for taking the time to type that all out for me :cuddle;
I guess when we talk of 6 it is the same as your 6,000 because yesterday the Dr told me it should be 150 (which equates to the 150,000 you mention). Dad is still bleeding, particularly coughing up blood, not huge amounts but it is bright red and very worrying to see, they are still running tests but giving immunoglobin (taking into account fluid restrictions) and will start on steroids (hopefully have already done so overnight). He wasn't so well last night (it's 8 a.m. here now) but was having dialysis when we were visiting and he's always a bit tired/weak then anyway. They are getting a hematologist to look at him and we hope to know more then.
Bless you all for your support, I feel so much better this morning after coming here. :grouphug;
Rose xx
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Petey,
Your post was very informative. Thanks. You mentioned a doctor at Duke that believed there was a link between ESRD and ITP. Do you remember her name? I want to talk with her or a least search for any articles she may have written. Ever since the removal of my last kidney this past September, I have had low platelets. They were completely normal before surgery and now they range from 20's to 89 at the last count. No one seems to know the reason for this either. I know it has something to do with dialysis or my absense of kidneys. I wonder if it could be the membranes of the dialyzer, the high blood flow rate or something else.
Question...did Marvin have ITP before he began dialysis or did it happen after dialysis began? My end stage renal disease began immediately upon surgery requiring dialysis at the same time. I have no way to distinquish if the ITP is related to dialysis specifically or to ESRD.
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Swarmsay, my brother doesn't have ESRD. Since ITP is idiopathic, they can't link his to any direct cause. I have kidney disease and my platelets are normal. Maybe Petey can give you more information. :thumbup;
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Rose,
lots of hugs :cuddle; :cuddle; :cuddle;
Your Dad is 80 yrs. old same with Nanay. Sometimes it scares us so much.
Rest assured your Dad and your family is in my prayers.
love,
cris
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They have started Dad on the steroids (injections) and he seemed a little brighter last night, but hasn't eaten a thing for 3 days and with everything else that makes him very weak. They are also giving him extra dialysis as he has a lot of fluid on his chest. They are still seeking the cause of it all. We continue to pray for his recovery, he has been such a kind, generous and active man and it is heartbreaking to see him suffering like this. Yes Cris you are right, it does scare us.
Thank you all for your support. I bless the day I found this site.
Rose xx
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Rose, I'm glad that your dad seems a little better after the steroid injections. Maybe he'll continue to improve. I've got my fingers crossed for you and for him.
Petey,
Your post was very informative. Thanks. You mentioned a doctor at Duke that believed there was a link between ESRD and ITP. Do you remember her name? I want to talk with her or a least search for any articles she may have written. Ever since the removal of my last kidney this past September, I have had low platelets. They were completely normal before surgery and now they range from 20's to 89 at the last count. No one seems to know the reason for this either. I know it has something to do with dialysis or my absense of kidneys. I wonder if it could be the membranes of the dialyzer, the high blood flow rate or something else.
Question...did Marvin have ITP before he began dialysis or did it happen after dialysis began? My end stage renal disease began immediately upon surgery requiring dialysis at the same time. I have no way to distinquish if the ITP is related to dialysis specifically or to ESRD.
swramsay,
The doc at Duke who thought there was a link between ITP and ESRD was Dr. Gail Macik. However, that was in about 1995-96, and she's no longer at Duke (not sure where she went to from there). Marvin was only her patient for a short while (maybe six months or so) before she moved on, and he now sees a different hematologist at Duke.
Marvin was diagnosed with ITP in December of 1986, long before ESRD and dialysis (ESRD diagnosis was in March of 1995 -- came on suddenly). Because of the almost-ten year span between the ITP and the ESRD, many of his doctors don't think there's a link. But, like Dr. Macik, I do -- we just can't prove it.
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Rose :grouphug; thinking of you
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Dear Rose, It does sound like things are headed in the right direction. I hope your dad begins to gain his strength back quickly. Perhaps they won't find the cause, but hopefully they will be able to manage the symptoms. Sending you love and hugs, Linda :grouphug;
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The hematologist came today and told us that they believe Dad has ITP and I was able to say "oh I've heard of that, the husband of a friend of mine has that" He explained about steroids and that they will try oral ones now (to save keep 'stabbing' Dad and bruising him!) so we are praying that they work. Thanks to your wonderful explanation Petey I have been able to explain all about it to Dad (and Mum) and it's given him a bit of hope.
But then we were struck a blow when the Sister came and told us tests show he has had another heart attack. He was in terrible chest pain during his first night in hospital and tests have now show it was another heart attack. He had 2 in October and now this, his heart is obviously becoming weaker with the blocked arteries etc. It seems as one obstacle is overcome then another is put in our path, but we will do our best to keep going with a smile on our faces. Thanks for all the support and advice, you are such great people. :grouphug;
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Given your Dad's history with heart attacks, why on earth did they not check him out when he was having the chest pains??!! They could have treated him then, instead of letting more heart muscle die these last few days. I'm keeping you guys in my thoughts and prayers. :grouphug;
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Rose,
I know you must feel like it's just one thing after another. Bless your heart. I'm thinking of you and Dad and Mum. Sending hugs and love across the ocean...
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OMGoodness Rose just saw this, :grouphug; :grouphug; Hang in there and I hope your Dad is doing better. Now about the heart attack why did it take them a couple days to figure that out, I think more and more Dr's need :Kit n Stik;. xoxoxox
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:grouphug; :grouphug; hopefully today will find things a bit better. you will be in my thoughts. it's hard to watch our parents decline, i know just how you feel.
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Unfortunately the steroids have not helped, they are going to try 5 days of intravenous immunoglobulin (IVIG) - but they have to take care to avoid fluid overload as they say another heart attack could take him, his heart is in such a bad way (some of you will remember that in October he was told he needed a triple herart by pass and valve replacement but he was given little chance of surviving the op and after discussion with Mr Mascaro, the surgeon, it was decided not to go ahead). We can only pin our hopes on the IVIG now.
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thinking of you, Rose
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:grouphug; Thinking and praying for your Dad and you Rose. :cuddle;
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Thinking of you and your family, Rose. :grouphug;
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Rose,
I'm very moved by your plight and am praying for a break and a miracle for your father.
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Sending prayers and hugs for you and Dad :grouphug;
Anne
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Dear Rose, I'm sorry that this is turning out to be so difficult for your dad. I am sure that you must all be exhausted. I pray that they will turn this around and help your father regain his strength. Try to feel the love and caring that is coming your way from around the globe. We are all sending it your way. Love, Linda
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Rose i am sending many prayers for your father and your family. :grouphug;
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:grouphug; :grouphug; :grouphug; :grouphug; :grouphug;
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Every day I get home from the hospital and feel down and sad, then I read your messages and the love wraps around me, it's strange - I've never met any of you but I care about you all and I know you care about me and my family. Thank you so much. :grouphug;
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We do love you Rose :cuddle; And those of us who watched their Dads suffer like yours is, understand the pain your heart is in. Take care or yourself during all of this. Give your Dad a gentle hug from me. :cuddle;
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You're very lucky to be able to be there with your Dad through all of this. I was away at college when my father was suffering through the final stages of and then passed from Lou Gehrig's. I regret having gone back to school that semester to this day. :cuddle;
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:grouphug; :grouphug; :grouphug;
lots of love and well wishes for you, your Dad and family
:-* :-* :-*
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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 :grouphug;
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I'm so sorry your poor Dad is having such a struggle, Rose. :grouphug;
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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.
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sorry that ya'll are having to go through this. You need some Prayers, and some Good Luck. Take care of yourself as well. :grouphug;
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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.
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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. :cuddle;
I'll try to find more later but have to pass the computer over to my husband right now.
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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 :cuddle;
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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. :grouphug;
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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. :grouphug; :grouphug;
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Thanks again everyone. :thx;
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. :grouphug;
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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. :grouphug;
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We're here for as long as you need us Rose :grouphug; .
Something just made me wonder this - do you have any siblings? It must be incredibly hard to handle this on your own. :cuddle;
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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. :grouphug;
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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. :cuddle;
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Bless you Linda :cuddle;
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 :grouphug;
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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. :cuddle;
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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 :cuddle;
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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}}}
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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 :bunny: 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. :cuddle;