6-MP ZERO ITP STILL THE FRONT RUNNER

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

Ha - not quite an angel, but thanks! :evil:

I hope all goes well tomorrow. Muscle relaxers may help a herniated disk - I've had two of them, and if there is pain a person might hold their neck in a funny position which could cause muscle spasms. I've taken muscle relaxers for years. I didn't think they did much so I stopped taking them and wowee - things went from bad to worse.

I also have a disk story for you - something to watch out for with Zach. My disks were herniated 5 years ago. Those normally just heal on their own and they don't do much for that except prescribe meds to get you through it. No one suggested any follow-up.

Four years later I began to have weird symptoms - muscle weakness in arms and legs, loss of balance, loss of coordination, etc. I told my doctors and was referred to a Physiatrist. He told me it was caused by Prednisone (which I've been on for 7 years). Things just kept getting worse and I was still being told that my problems were steroid related. This past January, I started to have nerve pain in my arm and severe neck and back pain. I called my GP and asked for an MRI of my neck. Turns out I have stenosis that is pretty severe and I need surgery to remove a bone spur from my spinal cord.

Point is - sometimes herniations can cause the body to produce bone, and those can grow into the spinal cord. If I had known, I would have requested an MRI much sooner and this would not have progressed to this point and possibly caused permanent damage to nerves and muscle. As many doctors as I have that all know my history, not one suggested follow-up. You might want to have Zach stay on top of that also.

Jeff, I don't post often, but I do log in to check on Zachary's progress. I hope this latest bump in the road smooths out soon. Thanks for the updates.

Ok Sandy, A fallen angel but and angel just the same. lol!

I hear what you are saying about the muscle relaxers but the doctor stated that he only had tense muscle and nothing was wrong with Zachary's back other then that, That's why I was upset with him, we actually had another doctor after that give him an ultra-sound and told us it was his spleen taking him off the muscle relaxers and sending him home with nothing. I was at dinner with my 2 sons and Zack said he was hurting in his lower back, he couldn't eat and he turned white as a ghost so brought him to the emergency and demanded they do an MRI on him that was when we finally got to the bottom of the herniated disc, it took another 6 months before they did the discectomy surgery.

Zack was back in on Friday for his INR and CDC, he registered 2.5 INR and his platelets were 262k, the weekend was uneventful and he is back in school today feeling much better, he completes the antibiotic tomorrow so I think everything should or has leveled out for him, I am going to call his Hematologist this afternoon to get another persciption of the antibiotic so I have it on hand as a just in case in the future.

Hope you had a nice Easter.

Jeff

Thanks for checking in on Zachary Tamar, it is very nice to know that Zack has people out there pulling for him, I don't know if I would have been able to get him through all his issues without the support of everyone on this site.

Jeff

I'm glad Zach is doing well again - hope it stays that way!

Well its been a couple weeks since I updated where Zachary is at so I thought I would stop by and let everyone know.

Zack was in on Friday, his INR reading was 2.2 and his platelets have gone back up to 600k, I am very surprised at the amount of variance in his platelet count, I am greatful that they are remaining high but I think it will take some getting used to, when his platelets were in the 200k range I honestly thought we were heading for zero, I am hoping the we are done with the coumadon at the end of May, we will need to schedule an ultra sound to check on the blood in his leg and if everything looks good he can the discontinue taking it.

Zachary is pretty excited, he has his 1st AAU Basketball tournament this coming weekend and short of having his conditioning totaly back from when this all started I think he is really looking foward to competing again.

I hope this finds everyone doing well.

Jeff

Great! Thanks for the update (again)!

Sorry I havn't updated Zachary's progress for awhile, we finally got him stable and they threw me in the hospital, when it rains it pours I guess.

Zachary has been doing very well over the past month since I last posted, he has been going in weekly for INR and Platelet checks and his platelets have been consistently in the 300-400 range. He is due to get an ultra-sound next week to check the blood clot in his leg and see if he can stop the treatment for it, if it is reduced or gone I think we are then done with that treatment. Zack's outlook has been very positive other then taking some steps back in his sports due to the ITP, he ended up loosing quite a bit of his strength throughout the time he was down and it really shows, he is finally catching up on all the school work he missed while he was out and thanks to the teachers they are letting him get it caught up before the school is out for summer so it wont impact his summer.

I am hoping we are now on the road to a normal routine for my son, I think he has paid his dues and deserves a long break from having to deal with this.

Hope this find you all doing well.

Jeff

Great news, Jeff. Thanks!

Good Morning to all of you

I am writing to post the condition of my son Zachary, I havn't posted in quite some time and would like to inform those of you that helped my son and my family through one of the most trying and difficult times in our lives as to what Zachary's condition is. As you may recall Zachary was admitted to the hospital on January 30th 2012 because his platelets would not climb over 1, after several attempts by the doctors with the use of extreme doses of Prednisone and several infusions of IVIG it was determined that Zachary needed an emergency splenectomy, we were able to get Zachary released from the hospital on the the following Saturday after his surgery on the 2nd of February and we began the long wait to see if the surgery would resolve his low platelets. I am reporting today that Zack is just finishing his senior year of Basketball (He was selected Captain of the team)and he has returned to his normal self, so I have missed the date of his one year anniversary but felt it important to let you good folks know what his status is.

Sandi, I would also ask a favor of you as I am hoping you remember who we are, I would like to ask that someone check up on my son periodically to see how he is fairing with the ITP and ensure he is aware of his innoculations that will be required a few years from now. I would like give his e-mail to you or the PDSA in hopes that you can send him periodic messages of importance concerning his ITP or if you can tell me how to register his e-mail with the PDSA. The reason I ask this is you folks of all people are aware of the importance of getting this after someone has had there spleen removed, the other reason I ask this is On January 4th of this year I was diagnosed with stage 4 prostate cancer that has matastisized into my bones, according to my Urologist it is terminal and I have approximately 3-5 years to live as it is a very aggressive form of cancer and I may not be around. Please let me know if this is something you can help me with or if anyone can make suggestions to set up reminders for him.

Sincerely

Jeff

Jeff,
I am so so sorry to hear your bad news.

Would you consider encouraging your son to join our community here? He could provide support to others who are considering splenectomy, and the community can provide support for him to keep healthy.
Erica

Jeff:

I am so truly sorry to hear that. There have been some people here over the past 15 years who have stood out to me as being a bright light in the universe. You are one of them. Some people and their stories just stick with me, and you and your son have definitely made an imprint.

I will speak to someone at the PDSA and see what we can do. Erica also had a good suggestion (if your son is willing), and I'm also hoping that your son has a dedicated Aunt or Uncle who can check on him sporadically throughout his life. Maybe with all of those things in place, he will have a good network of reminders going on for a good while.

In the meantime, please check in with us yourself and tell us how you are. I'll be thinking about you.

Sandi

Sorry to hear your news, Jeff. Please keep us updated on how you are doing.

It's great to hear that Zack is doing so well.

Jeff

As a new ITP member I read all of your posts about your son and just want to say first of all how happy I am that he is doing so well, but to also say how sad I am that you are fighting prostate CA with such a grim prognosis. But I also wanted to offer a word or two of encouragement. 3-5 years in the cancer world is a LONG LONG time...perhaps even time enough to find a cure or at least treatments to manage it. I remember 25 years ago, my mom was diagnosed with a rare form of lymphoma. At the time, the "average" life expectancy for someone with that disorder was about 5 years. Well, 25 years later her cancer is in remission. It rears its ugly head from time to time requiring some chemo...but all in all, she is now more likely to die WITH the cancer than FROM it...so while its easy for me say, please try to keep your hope alive and resolve to LIVE the best life possible for as long as possible and BELIEVE that miracles happen and new treatments are on the horizon.

Debbie

Erica

I would be overjoyed if Zachary would join the discussion group, I think he needs to be in contact with all of you. I recall talking to alot of people that had there ITP continue to create problems after a splenectomy or the splenectomy failed from the onset. I have talked to him in the past about becoming a member and was met with the typical 18 year old response.

I think maybe it's time to sit him down with a reality check and convince him that he needs to be a part of this group and he really...we really do owe alot to this site and all of the people that were and are there for us. Supporting others is in my mind the least he can do and he would be a great candidate for the younger adults that are struggling as he really went through alot over that two year period.

Thank You

Jeff

Jeff:

PM me his e-mail address. The PDSA will include him in the monthly e-mails that are sent with the latest ITP info.

Thanks Sandi

I have been in the process of creating some lists to send out to relatives with the things that need to be done in the event of my passing and Zachary's ITP inoculations are on the top of the list, I remember the doctor saying it is imparitive he get them as they become due when he was released from the hospital in order to avoid issues. I learned pretty early on in dealing with his ITP that you really need to be thorough so I figured I would at least ask if there was another option as well to ensure he is taken care of, I will also be leaving a list for my wife but she is unfortunately not dealing with my situation very well and will probably get worse as this comes to a head.

Please don't feel bad for me you have been so nice to us Sandi and I thank you for that, do you remember when I wrote about feeling guilty for Zack's ITP? I had been exposed to some toxic chemicals while in the Marine Corps and felt it may have had something to do with him getting ITP, you had written back telling me not to be so hard on myself. I had a conversation with my Oncologist recently and he feels the chemicals are responsible for the cancer but probably not the ITP. I have been really feeling things happen for a reason and I find it ironic that I no sooner got Zachary back healthy again that I became I'll, I am so greatful to have been allowed to get him back on his feet before anything happened with me, I don't know what his outcome would have been if I wasn't around to watch over him.

I'll stay in touch with what is happening, I have to date been given Hormone medication along with a Lupron injection and early April I'll be starting the next go round with an infusion of Zometa (Zoledronic Acid) another injection of Lupron and depending on how I have progressed to date I'll be looking at surgery, Chemo, Radiation or a combination of them, it's kind of up in the air at this point.

I hope things are going well for you.

Jeff

Debbie

Thank you and that is a fantastic story about your mother, your family must be totaly relieved, greatful and proud of her. I will fight a good fight no matter what happens, I owe that to my family and especialy Zachary, I have to practice what I preach.

Jeff