ITP Patient who Needs Open Heart Surgery

My Dad needs open heart surgery for a triple by-pass. He went to the hospital with 12,000 platelets. They gave him high doses of steroids, a treatment of rituxin and they are on their second round of IVIG. He has been doing this for a week and his count has only gone up to 16,000. They are now talking about doing a splenectomy. But they are also saying that they don't think the splenectomy will work since he is not responding to IVIG. Does anyone have any suggestions or has anyone dealt with something like this?? He just doesn't seem to be responding to any treatments. He has tried the Win-Rho in the past and that didn't work either. Just really worried about him going into open heart surgery with his count being so low. Thanks!!!!

Hi, have they tried platelet transfusions with a ULA match. The platelets have to be matched perfect but this should work for your father. Sometimes, they need to do some searching to get the right match--but it would be worth a try.

Deedee,

Thanks for the info, we will ask his doctor about this. We haven't heard of them doing any matching. They just tell us he his ITP is refractory and resistant to treatments. Any additional information you have would be super helpful. Thanks so much!!!!

I've had several operations with low(er) counts, including a triple bypass. There's no magic secret -- you have to get the counts to a point at which the surgeon is willing to operate, balancing the risks. I've had better luck with trauma surgeons, who seem to be more willing to operate on someone with low counts.

It's a balancing game -- how long to wait to try to drive the counts up vs. the cardiac risks. You list some treatments, but there are others, of course. Unfortunately, most of them are not fast acting. IVIG is usually the treatment of choice for acute situations, since it works quickly. Sounds like you have tried that without success.

It is possible to do surgery with low counts. For my splenectomy, as I recall, my count was 4 when the surgery started, and around 50 when I came out. They did a bunch of platelet infusions during the surgery -- you have to plan ahead and have a whole bunch of platelets sitting there waiting and ready to go before the surgery starts. My counts on the triple bypass were better, in the 40s I think. I had a great surgeon, he went very slowly, took great care with the bleeders, cauterized everything, and the surgery took about twice the typical length of time. But I came through it with flying colors.

If you go the splenectomy route, remember that it is just another treatment, not a cure. It raises counts for a lot of people, but not for everyone. And, the odds of success decrease with age, which I'm guessing is something you dad will need to consider.

If you want to chat, happy to do so. Send me a PM. Best wishes.

PS: has your dad actually been diagnosed with ITP -- long ago or recently?

Dee Dee - I believe that is "HLA".

Sandi wrote:

Dee Dee - I believe that is "HLA".

Yah, this.

Another issue with platelet infusions -- be sure they don't use an IV pump to administer them. The pump crushes the platelets and you will get no benefit. I had several days once during which I was getting platelets, and the nursing staff used an IV pump. The hemonc happened to walk in and he went nuts. He said platelets should be given with just a gravity feed. Dunno, but it's something to ask your doc about.

Well, they just infused platlets with an IV pump he is scheduled for splenectomy at 3 today going back to hospital and discuss this. Thank you for the info.

itp diagnosed about 15 years ago platelets have been dropping from 50 to 12 in the last year promactin didnt work last year either. Splenectomy scheduled for 3 today and Mon possibly moving forward with heart surgery. Thank you for your info, will advise as we go.
Thanks again.

Best of luck with the splenectomy. I hope it takes for him.

If he has the CABAG -- a few suggestions. First, tell him to hang onto the little pillow they give him to hold onto (tightly) when he coughs. Coughing is really painful after they cut the sternum in half, even with it wrapped with the wire they use. Hugging that pillow really tightly when coughing is hugely important. Also, tell him to listen when the recovery nurses tell him to get up and walk, early and often. I did that, and I think it helped me recover much faster than some of the other patients who had the surgery the same day.

After the CABAG, they will probably want to put him on blood thinners, to prevent clots, which is sort of odd to think about with ITP. Best suggestion I can make is to get his cardiologist and his ITP doc in the same room and talk out the options. We had a lot of back and forth until we did that, and those docs pretty quickly agreed to a set of counts -- under a certain number, I took a certain dosage of Plavix + aspirin, with different counts I took a different mix, etc.

It's something to pay attention to -- you have to walk a careful balance. Hopefully, the splenectomy will take and he won't have to worry about that.

Best wishes.

Thanks, Sandy, I wrote it down somewhere--but couldn't find it. I will write it down again. Sometimes it is hard to get the "HLA" match.

My Dad did have the spleenectomy. He's doing well and his platelet count went up to 84, but he also had infusions. Just hoping his counts keep rising. Thanks to all for your support and advice. We'll keep you updated on his progress. Hoping to have his heart surgery on Tuesday now.

Even if the splenectomy isn't a long-term treatment for the ITP, we can hope it will keep platelets high enough to get him safely through the bigger surgery. Quite a few of us failed splenectomy patients had temporary rises in platelets. (And I was 63!) Here's hoping work out well for your dad.

My Dad had a double by pass surgery yesterday and evertyhing went great. No excessivie bleeding, nothing to worry about. He went in with 50,000 platelets. They did an infusion during the surgery. The day after he has over 100,000 platelets. We're just hoping that the spleenectomy will work for the long term and his platelets will stay above 50. The norm for him lately has been around 12, so 50 would be great. Thanks to all for your advice and suggestions. They helped us to be more informed and to feel better about the whole procedure. Thanks again to all!!! I'll continue to update you on his progress. He's determined to get out of there fast already up and eating on the morning after.

Great news, and thanks for letting us know!
Erica

Great news.

My dad is 75 yrs old, non-splenectomized, on Nplate and is scheduled for bypass surgery. He responds well to the Nplate and last week was at 87. His hemo doc wanted to give him a double dose of nplate last week as his target for platelet count before surgery is 250,000!?!?!?! We declined and opted for dose and a half (fingers crossed). I understand from what I've read that the ideal platelet count should be 100,000 or a little above - recognizing you can lose up to 60% of platelets during surgey. We have hemo/cbc appt tomorrow - surgery on Tuesday. I do not want to risk blood clots and think 250,000 is way too high. Ugh....so hard to know what to do!

P.S. Hemo is not an ITP specialist and has given me misinfomration in the past..

Oooooo geez. I agree. You don't need 250k for that. Hopefully they will take proper precautions after the surgery to prevent blood clots, ie compression stockings, etc.