6-MP ZERO ITP STILL THE FRONT RUNNER

Jeff, thanks for the update. I continue to root for Zachary and a lifetime of safe platelet counts.

Tamar

Just a quick update

Brought Zachary for bloodwork yesterday at 5:30pm and awoke this morning to find that he had a bloody nose throughout the nite (Not Major). I called this morning to inquire as to what his platelet count was concerned since he hadn't had one since his surgery 2 weeks ago, the clinic would not release the platelet count to me so I called his Hematologist to see if they could get the count only to find out the clinic lost the bloodwork Zack gave them last night, brought him back in this morning and the Hematologist's nurse called a short time ago to say Zacks counts are currently at 764k. I am assuming the bloody nose is simply due to a very dry house.

So, with the exception of a minor hiccup, this update is very incouraging. Zachary is now 2 weeks post surgery, his platelets are up and he has told me he is ready to return to school Tuesday with Monday being Presidents day.

Jeff

P.S. I really don't know what to think about a lab that looses bloodwork, I probably would have gone off the deep end had his numbers been as low as they were prior to the surgery.

That's great news!

When platelets are to high, that can also cause bloody noses. Maybe that's the cause and it will settle down soon when his counts drop.

www.mayoclinic.com/health/thrombocytosis/DS01088/DSECTION=causes

Jeff, Masonic has always run my platelet count while I wait. I have a standing order and anytime I want I can drop in for a count (I call ahead, which they have at times required so they could get the paperwork in order--not sure what their policy is at the moment). I believe they close at 4:30, but they open at 7am, so if I do stop in it's before work. Might be worth checking in to...

PS great news on Zachary's count!

Tamar

The Clinic was one in Andover, it was not the Masonic Clinic, when I called Dr. Redings nurse she was apologetic and I told her not to be it wasn't there fault, I know they run the counts while you wait and they are very good about it unfortunately we live up in Andover so it is more difficult to get down to the "U" for the counts on a weekly basis. When I called Dr. Redings nurse she said she was wandering about Zacks counts and thought it was od that they weren't posted knowing that I had made 2 months worth of appiontments in advance at this particular clinic that lost the bloodwork. I found it a bit funny that after the nurse called them and Zack went back in to get his blood drawn again they were very prompt about getting the information to the Masonic clinic, my guess is that they wont allow it to happen again.

Jeff

OK

Officially 3 weeks post surgery for Zachary, he is completing his 1st week back in school and will be finalizing his Prednisone on Sunday (He was told to take 5mg per day for a few days to complete the taper) His attitude is really becoming positive since returning to school which is great and we have not had to deal with any Bloody noses for an entire week. His Hematologist has told him he can now get his platelets checked once every 2 weeks as they seem to be holding. Upon returning to school he had a letter waiting for him from the University of Saint Thomas track coach stating he should visit the college to see what he thinks of it and he had his high school Track meeting today so he is pretty excited. While going through this ordeal he would not talk to me about college and getting his ACT practices in so he is ready for the test in June.

We did have a minor issue this past week with him not quite understanding what his limitation are while he heals from the surgery, he asked his doctor if he could start shooting some baskets and was told that would be fine so sure enough off to the YMCA he goes to then find out he is having stomach pains, I asked what he was doing at the YMCA and he says he thought it would be ok to play 5 on 5 full court Basketball, I about hit the ceiling but know he understands what the restrictions are now and why they are in place. I have to admire his motivation and desire but do not need another trip to the hospital.

I hope this update finds you all doing well, you are truely an incredible group of people and I am greatfull to have you all helping our family deal with this. I will continue to update Zachary's progress.

Jeff

Thanks for the update, Jeff. Sounds like Zachary is getting back to his life and to being a kid. That is wonderful to hear. St. Thomas has a beautiful campus in St. Paul.

Back on the Roller Coaster

This update is not so good, Had to bring Zachary in to the doctor last Friday because he was complaining of pain in his lower left leg on Thursday. Upon having his leg looked we were sent to have an Ultra sound done that came back positive for Blood Clots and we once again were sent to the Emergency room. Zacharys platelets are at 569k. They are now putting him on Coumidon and Lomanox and have stated that we will need to watch for bruising and bleeding and once again he is out of school. I am so frustrated with this. Prior to the slenectomy and when Zachary was 1st diagnosed with ITP I asked his doctors if we should be concerned about a blood disorder called Factor 5, it is a clotting disorder that took my mothers life at an early age and I have also been diagnosed with it and from my understanding there is a 50% chance that you can pass it on to your children. Every doctor I told it to said not to be concerned because ITP is just the opposite of Factor 5, now I am not so sure and am thinking the doctors are not so sure either as they are finally running the blood test to determine if he has the Factor 5. I know that I am dismissed because I am just the stupid parent but this is rediculous, I feel that unless you are reading the riot act they don't want to hear about your concerns.

I cannot believe that we have fought with this bleeding disorder to now get Zacks platelets under control to now have to fight with bleeding and bruising due to bloodthinners.

Jeff

I'm so sorry to hear that, Jeff. Clotting after splenectomy seems to be getting more and more common these days. On the positive side - his counts are up and he doesn't have to deal with both blood thinners and low platelets at the same time.

Don't beat yourself up. I know you did everything you could.

Thanks Sandi

I don't know if I should cry, scream or both. Here is my biggest fear, Zachary is not out of the woods with his platelets right? We need to have them checked every other week to ensure they don't plummet and hopefully keeping his platelets high for at least 6 months will give some surety that he has a chance to remain with a high platelet count, now he is taking coumadon and I have to give him an injection of lovanox ( I may have misspelled it) twice a day to thin his blood to a point where the clot doesn't increase in size while his body disolves the clot. What if his platelets plummet? Then What?

I know you said not to beat myself up Sandi but there is more to this that is frustrating. Sometime back I recieved a letter from the Marine Corp stating that While stationed at Camp Lejuene North Carolina I may have been exposed to toxins in the water supply. I have had some health issues that may or may not be associated with it and I'll probably never know as from my understanding between the Marine Corp. Navy and Congress there is quite alot of finger pointing, denial and C.Y.A. I keep asking myself if it's possible that the issues with Zachary are associated to toxins, it's like we keep going from one thing to another, it's never ending.

I'll stop venting now, thanks again Sandi.

Jeff

Sorry to hear this Jeff!! Understand your frustrations!!! None of this is your fault, so please do not blame yourself!! You need to be there for Zach and if he sees you maybe blaming yourself for his Health issues, that will only make it worse for him. Prayers are with your family!!!

Jeff - even without the toxins there is always a chance of hereditary disorders. I started an autoimmune mess and one of my daughters is paying for it. I blamed myself for a long time so I know how you feel. You just have to realize that you would have never hurt your son intentionally. Everything that happened and spiraled was not in your control.

Vent anytime. That's why we are here. We're family.

If Zach's counts go down the doctors will find a way to deal with it. I know a few people who have been on Coumadin with low counts. It wasn't easy, but they juggled it okay. Take it one day at a time, okay?

Jeff, I was watching some videos on Youtube about this new movement, called "Earthing"-really a very simple concept of being grounded to the earth's electrical field by walking barefoot upon the earth. Here is a research paper written on it:

www.hindawi.com/journals/jeph/2012/291541/

If you scroll nearly to the bottom of the article, there is a section in there about the effect of earthing on the clumping and clotting of the blood cells, that I found really fascinating. There seems to be some huge potentials here.
It apparently thins the blood, so if you're on blood thinners already, you'll need to halve or 3/4 your regular dosage. It also is seen to have a profound effect on the body's circadian rhythms, the immune system, pain and inflammation can be entirely removed with this. It seems to have some effect on most components of the blood, so maybe platelets too, IDK. I just recently have begun reading on this, so am no expert, but the explanations seem sensible and easily verifiable and makes me want to learn more. A little put off by all of the gadgets that have suddenly appeared for sale, but I'm sure most of it could be put into place by simply taking some time each day to get out in nature. Sounds a lot better than a bunch of drugs for life!


I was watching an experiment done by David Wolfe on Youtube on Earthing. I think you'd find it interesting to see the changes in the blood after an hour's worth of grounding. Thinking it might benefit your son:
www.youtube.com/watch?v=te4WPdIsBtQ

I watched most of the 5 clips on You Tube. The more I watched, the more I lost interest!!What is all the stuff on the tables? Seems like a scam to get people to buy stuff!! I am sure those people had to pay to attend this seminar. If this is actually true, then Dr's all over the world would be prescribing to go outside and ground yourself to relieve pain and other medical issues!!! My first thought when I watched this was those Evangilists that touch someones head and they are magically healed. Jeff please DO NOT rely on this to help Zach for his blood clots!!!

I assumed this was posted as a joke - do you think it was meant seriously, earthing therapy?
Erica

I hope the 'grounding' cure was meant as a joke. But I've seen the 'zapper' mentioned here also, so perhaps not?
Didn't waste my time watching the videos. The description and screenshot were sufficient.
Yep Dean, I was also reminded of, "Lay your hands on the TV set.....".
I've worked in electronics engineering for 30 years now. Much of that time 'earthed' with grounding straps, grounding floors, etc (to prevent blowing chips from static discharge)....and golly-gee-willikers....I still have ITP.

I'm always amused with 'treatments' which are devised solely to separate me from my hard-earned cash.

I admit it kind of had my attention until I seen this David Wolfe guy!!

Dean

Don't worry, I'm more old school then that, "if it sounds too good to be true it probably is". Does anyone have experience with these bloodclots, I am wondering when Zack will be able to walk on his own, right now he cannot even bend his leg fully straight let alone put any pressure on it, the doctor said about a week but I'm not so sure. He goes back in today at noon for his 3rd test to see if we can take him off the Lovanox, he registered above a 2 yesterday.

Thanks for your comments by the way, I think my frustrations with this got the best of me.

Jeff

Jeff:

How is he doing? Did they look for any clotting disorders?

I cna't answer your question about the clot. I have never had one. I'm sure it varies from person to person depending on th reason and how large the clot is.

Sandi

Zachary is doing better, he was actually able to walk without the crutches yesterday and he says his leg feels much better, the tests were done for the factor-5 but it takes about 2 weeks to get the results, I would bet we hear this week as to what the results are, they did test for other issues as well as so far they are coming back negative, Hopefully the clot was due to surgery and nothing more, he did have 2 surgeries very close togather so that could be the case. His platelets were at 625k on Friday and his count for the Coumaden was 2.3 so we can stop the lovanox, I need to bring him in for another check today and if he is stable we can reduce the visits to once a week. Luckely it is spring break so he doesn't have school this week, we made a vist to the counselor Friday and picked up some homework for him to hopefully help in getting caught up with his classes.

Jeff

That's great, Jeff! Please keep us updated on his progress.

Quick Friday update

Zachary is now 6 weeks post splenectomy as of Wednesday and I believe two weeks into dealing with the bloodclot in his leg, he is moving about much better and even beginning to return to his sports though he has told me that when being active his leg begins to cause pain after a short periord of time, I assume that due to the bloodclot this will take awhile to go away fully.

I am a bit concerned that when he went in for his INR to check his count for the Coumadon they also checked his platelets, this was yesterday and I recieved a call from his Hematologist yesterday afternoon to inform me that his platelets were at 1,00,041. I know that it has been mentioned to me that it is not uncommon to reach a million after a splenectomy but it is a concern concidering that he is dealing with a bloodclot. I will be calling his doctor this afternoon to check on the factor-5 results and hopefully will be posting good news about it and Zack will be going in on Monday to have his platelets and INR done again.

Hope this finds everyone doing well.

Jeff

Glad Zach is going better. Those counts are high - hopefully it won't cause any problems. Let us know about the Factor V. There was another person here this week diagnosed with it also - he clotted with counts below 50.

Hello Everyone

I wanted to write an update on Zachary's status as he will be 8 weeks post splenectomy come this Wednesday.The Bloodclot that occured after Zachary's surgery is much better, he is still on the Coumadon and will need to stay on it for another 2 months but he sure seems to be doing much better, we were doing yard work this weekend and I was very surprised to see him running around the yard with his brother and friends as though nothing was wrong.

He had his Platelets checked late last week and we were informed this morning that they are currently at 903,000k, his INR is 2.9 so we are very optimistic that we are going in the right direction in order to get him on stable ground permanantely.

I think it is safe to say that Zachary feels he has gotten his life back, I am guessing he has lost all the weight he gained while taking the Prednisone and he has a very positive outlook as of late. I am saying my prayers that we can continue this progress.

I hope you are all doing well.

Jeff

Great news! I really appreciate the updates. I think about Zach from time to time.

That's great that Zach is doing so well, Jeff! Keep the updates coming!

I am very nervous about this 9 week post splenectomy update. I had Zachary into urgent care night as he was very congested and feeling dizzy. When he was released from the hospital after his splenectomy they sent him home with a filled perscription of Lavofloxacin (an antibiotic) and instructions that should he get a high fever he needs to start the persciption and seek medical attention. Last night upon taking a chest ex-ray INR and CBC his count came back at 326k with his INR at 2.6, the doctor instructed Zachary to take the antibiotic for the virus and said it could interfere with the Coumadin in turn raising his INR, that being said, my fear is that if his platelets continue to drop and his INR starts to rise above 3 he is going to be in serious trouble, I just talked to Zachary, he stayed home from school as he was still pretty sick this morning.

Does anyone have any advice? I called the doctors and nurses, unfornately his platelet issue is part of the Hematology Deptartment and His INR is part of the Bleeding and clotting disorder Department and it seems I am having to leave messages for the INR nurse who is in a seperate clinic altogather.

Jeff

So sorry to hear all of that. It's quite a predicament.

I'm sorry I don't have any advice other than taking things one day at a time. I've not had to deal with clotting and INR's up to this point, so I don't have the experience or the knowledge.

When I found out that I had antibodies that can cause clots, I was also passed around because my Hematologist could not/would not manage the clotting end. You'd think one person should be in charge of that to keep the balance. It doesn't seem to work that way.

He's so young to be going through all of this. I hope things improve soon. I'm sure you are quite worried. Keep us updated, Jeff.

On second thought, I do have some advice. In emergency situations, it might be best to seek help from a place other than urgent care. I have a friend who has ITP and APS (clotting disorder). She has had a few situations where the ER doctor at the hospital was not familiar with APS, and did not take the appropriate steps to diagnose a life-threatening clot. He assumed that because she had low platelets, she could not have a clot (not true). She had to explain and really push for tests that she thought were necessary and she ended up being right. Do not assume that an ER/urgent care doctor will know the right steps to take. If you believe that something isn't right, be vocal.

This is a tough balance as you know, and having an illness on top of it can make it even more difficult because he is asplenic. Never let them brush you off. I know you are his best advocate and you are very on top of things - keep it up!

Thanks Sandi

I brought him back in this morning for an INR and CDC he is at 2.8 INR and 266k, the good news is that he is feeling alot better, I just hope he can shake this virus before he eats through all the platelets he has left, I know 266 is a very good number for ITP but it would seem we are on a pretty steep decline from 903 to 326 to now 266 he needs to level off and with his INR up .2 points I am really concerned what the weekend will bring for him, I have been letting him go by himself for these tests and today I went with him, I'm glad I did because I was able to talk to the nurse and get him in again tomorrow, I called the U as well and made sure they are aware of my concerns. I hear what you are saying about urgent care I really don't like to have anything to do with them. We had the same doctor Tuesday that sent Zack home with muscle relaxers when I brought him for the herniated disc,The Doctor had him lift his shirt to listen to his breathing and asked why he had a scare on his back, I was pretty quick to remind him that muscle relaxers don't help a herniated disc as he had perscribed. I think he was a bit offended by the comment but I really didn't care, he made a bad call and should be aware of it.

Thanks for the advice Sandy, You are an Angel.

Jeff