What if?

Arrgh, the what if's are back. As I look at my poor husband covered in nasty purple bruises and petichia, and repeat in my head the nurses words from Monday "if you get cut or have a head injury, go immediately to the ER", I wonder. What can the hospital do to stop bleeding if you have zero to 3 platelets? He doesn't respond at all to steroids, has had limited success with IVIG, but the last time didn't work very well, platelet transfusions have little to no effect on him either.

Hi Nancy,
Try not to worry to much. I'm in the same boat as Don. When my platelets go down to 1000 I, also, don't respond to treatment; it sometimes takes a while for me to respond. My doctor does the IVIG over a 24 hour period when I am really bad. Then, my counts start to go up. But, when they do a fast drip, I do not respond. Maybe you should talk to your doctors about doing this slower drip. It is recommended by Dr. Liebman who is a consultant on the PDSA web site. Your doctors should contact him for some advice. My doctor is a former student of Dr. Liebman--so he just calls him for advice. He is a very good doctor--one of the best Hemo in the United States.

Also, what is happening in the platelet infusion--they are not getting a complete match (I think it is called a ULA or something similar). They have to get a complete match sometimes to get the infusion to work. The blood bank needs to look for this match--then it will work for him.

Also, I was going to let you know since I stopped drinking coffee, tea, and eating tomatoes, I do not get the bruising like I did before. It has really helped a lot; but I still get some blood blister in the mouth--but not too bad.

It's natural to play it, but the "what if" game is a dangerous spiral. What if the hospital burns down. What if he gets hit by a bus.

The question to ask yourself is this: if you knew he was going to have dangerous bleeding 2 weeks from today (keeping in mind that dangerous bleeding is pretty rare with ITP), would you do anything different today? Or tomorrow? From your other posts, it sounds like you are doing everything you can for him. So, remember the cardinal rule: one step at a time. You don't have to solve everything today. Just take the one step that is next.

Best wishes.

It is something I have never done.

I was born with a hole-in-the-heart and had it repaired though a small hole is still there and am monitored.

I have had ITP since 1994 on and off though have an 8 year break. I lost my spleen due to ITP. My platelets were down to 1 and I did mildly bleed etc

I have had Phumoccocal Meningitis and 18 month later Septicaemia. I wear a hearing aid in my left ear and have vertigo which I control by wearing a hat out of doors.

The nearest to what if I got to this year when once I had blurred eye and went to the A&E and they discovered low platelets (again). Follow up and the city hospital and they told me to go straight to them if I get the blurred vision again. I came home and revisied the symptoms because that is not my normal symptom and discovered about brain bleeds etc. Yes that week I was agitated but called upon my childhood health experiences and faith and told me to take a day at a time and enjoy each day. Since then I have discovered I get vertigo migranes and blurred eye is a symptom. However the advice is to go straight to the city hospital and will do so because still could be a link.

I have relaxed about the blurred eye - if it is ITP related eg brain bleeds or simply low platelets with another cause then they will deal with it. If not then its vertigo and its safe.

What if can send us do-lally. What if. Any human can be dead in an hour playing the what if game if we think about it seriously. None of us know when our lives will come to an end. That is the same for ITP patients. ITP patients are no different to other humans and living cells. Life is special - a gift. A gift that none of us know when it will end. Whilst we have it - live it.

That is some very good advise Rhiannon, something we should all live by cause your right. Nobody knows what's gonna happen. My cousin died very unexpectedly one night in his sleep 3 years ago from cardio myopathy and he didn't even know he had it and my uncle found out in jan 09 he had bowel cancer and died almost exactly 6 mths later, so we should all just go out and live life and try not to worry because anything could happen and we just don't know. We should all treasure the time we have on earth.

I, too, agree with you Rhiannon; everyday on earth is a gift from God, and we should cherish each day and live to the fullest. Having ITP makes you appreciate this even more. Everyday that I wake up and have had a good night's sleep, I thank God for the good nights sleep. I thank God for the good days that I've had and try to be thankful for each day. None of us know when something may happen to us.

What if's... My husband and I had this conversation just yesterday. My platelets tanked this week, and if there was ever an inconvenient time it is now; as if I'd ever really pencil it into my schedule. Steve was wondering if we could push the IVIG infusion off for a couple of days. As appealing as that was, it definitely wasn't the sensible thing to do.

My platelets were at 6K; what if we'd gotten into a car accident, what if I slipped and fell down the stairs, what if the electric knife slipped while I was carving the turkey... Knowing there was something I could do and the risks of not treating were greater than the side effects of treating, I felt I had to treat. So, I stayed at work until the office close, I went and had supper with my family, then I went to the hospital for a few hours of peace and quiet with the IV pump. Hey, I've wasted time doing worse things!

I usually don't play the "What if..." game. I can't live my life barred away in my bedroom. My children need their mother and my husband needs his wife. Please don't tell my Hemo. that I go ice skating with my kids or that I'm trying to find a stable where I can do more horseback riding. It can be difficult not to dwell on what might happen - the possibilities are endless. However, you can flip the scenarios around. What if you you continue to live life as normally as possible? What if the fear and worry keep you from some of the most amazing experiences of your life?

Will I go sky diving this week? Maybe, if my counts skyrocket by Monday, :laugh: but if not, I'm content with a walk around the pond, roasting marshmallows in the backyard, and enjoying a good laugh with some great friends. I refuse to let my ITP control my life, so it has digressed to causing only a minor interference from time to time. I have ITP, but it doesn't have me.

PS (DeeDee, What is it about the slower drip that makes it more successful?)

I'm not exactly sure why the slower drip works so well. My hemo went to school at USC (teaching hospital) under Dr. Howard Liebman who is a consultant on PDSA. When I was in the hospital in July, they did the IVIG under a fast drip--and it didn't work for me. They actually did it twice. I then changed Hemo doctor's while in the hospital (was there almost 2 weeks. My new doctor had leaned this from Dr. Liebman--and it worked to raise my platelets enough to get out of the hospital.

I was again in the hospital 4 weeks later with a platelet count of 1000. My hemo did the IVIG (2 of them) over two days at a very slow drip. This did the trick; I was out of the hospital before 4 days this time and have done better since--raised my counts up to around 63000. And, they kept going up higher (go to get them checked again on Monday.

I'm with you; when I have good counts, I go horseback riding. This is what I really enjoy in life. I don't want to have regrets that I didn't do what I enjoy. Hang in their, but make sure you get your rest in between. I feel this is important, too.
Dee Dee