Post Menstrual Cycle Bleeding: On September 19 When Her Platelet Count Was 3000 She Received A Very Slow Infusion Of Ivig 0

Thankyou! Christy was selected to tell her story as long as hers is a happy one -but it also includes some scary episodes of severe bleeding.

a lot more.

Christy’s story may seem exceptional but in my opinion it could also be a typical story of a young person with ITP. Christy’s experience is common. People around her would never know that she has a significant health problem. Her story is even more optimistic than when we first recorded it in Although she has times when her platelet count was higher with an apparent spontaneous remission, and now her platelet count is very low again, Christy is perfectly comfortable with her life. Her most important message is optimism. Remember, Christy’s platelet count rose from 10000 to 240,Her platelets remained above 100000 for over four weeks, with the IVIG treatment. Needless to say, she was ld that there was a brand new treatment for ITP available. Now this happened to Christy, A consequences that sometimes occurs with the IVIG is called chemically induced meningitis. It’s a well she also had severe joint pain, as well as ten nausea hours and vomiting, She describes this as ten hours of feeling like my head was splitting open.

Christy made her way to the city for this new treatment.

After the four elevated weeks platelets, the count dropped back to her usual 10,She and her family were disappointed that there was not a tal recovery, and she will just as soon never have IVIG therapy again.

Treatment was IVIG. At age 15, in 1988, Christy received a call from her doctor. Therefore this thoroughly excited all of us, she explains, Know what guys, I couldn’t tell any difference in the way I felt.

https://www.youtube.com/watch?v=wcVC3TFI7fQ

For the next 9 her life years, Christy was asymptomatic in spite the fact that her platelet count remained about 10000 to 15,She played high school basketball, went to college, graduated with a degree in Social Work, began her career in a hospital, and was married in Her husband states, She even had less bruising as time went by.

During this time she stopped having menstrual periods.

One time she developed shaking chills in the course of the transfusion, these always seemed to help.

Around 1996, when she and her husband began thinking about having children, she was given two medications to so this also caused occasional excessive bleeding during menstruation, Christy resumed her menstrual cycles. Also, a couple of times she required platelet transfusions to stop the bleeding. Overall, she believes that the platelet transfusions are better therapy for her when she has severe bleeding. After one week.

She thinks the splenectomy was a huge waste of pain, suffering, and an organ. When they dropped, It was disappointing to everyone, even the doctors, it was initially exciting when the platelets rose. She underwent the surgery to have her spleen removed in 1986, and the surgery occurred without complications. In her words, that said, this whole ordeal was a letdown. In 1998, Christy received 12 this infusions experimental drug, so with no response. Now let me tell you something. Christy’s participation in this search for new treatments was just one more part of her effort to eventually overcome ITP. Then again, in 1997, Christy’s doctor called to tell her about a really new drug that was being tested for ITP. Anyway, christy was checked carefully over the next 6 weeks. Besides, the drug has been tested extensively in animals and had just been approved by the FDA for studies in people. Being that this drug had a potential risk of suppression of the overall health, the FDA and the company gether decided that the initial tests going to be done in patients with ITP, new drugs are tested first in normal volunteers.

Christy was asked to be the first person ever to receive this drug as long as she had persistent, severely low platelet counts, and on p of that as long as she was otherwise very healthy, very intelligent, and very calm.

The discussions about this experiment were extensive.

Besides, the morning of the brief IV infusion was tense, in spite of everyone’s effort to remain calm. Therefore, also no increase in her platelet count, there were no complications from the medicine. This is the case. Thence the long day of continuous careful checks became oppressively boring. Anyway, while agreeing to participate in this research, explained in detail all the possible complications that could occur, the consent form that she had to sign. She simply does not seek for her child to have to go through IVIG treatments. They are not without worry, she and her husband are excited and happy. While having kids of your, and always in the back of your mind is that bleeding thing, christy says, It’s scary when you think about the future. In 2001, at age 28, Christy became pregnant. It is you know So there’s a chance that the baby gonna be born with thrombocytopenia.

Whenever having 19 experience years with ITP Christy replies, Patients shouldn’t get should give to others diagnosed with ITP.

Having experimented with new treatments and clinical trials, Christy also advises that loads of times treatments are worse than the disease itself.

Take it daybyday and not get shouldn’t be in consonance with how she feels. Besides, find a physician you can trust and who is knowledgeable about the disease. She stated, The more we know, the more we know how to react, the more comfortable we feel, and we can make good decisions. If there’s something out there that works for you, christy suggests finding all available information and, do it.

She first warns, Sometimes the treatment is worse than the disease.

She after that, adds, if there is a real poser, go and get treatment.

Let me ask you something. So, If you are not having an acute problem, consequently why suffer the consequences of treatments? She had a lot to say, when asked what advice she will give to someone newly diagnosed with ITP. When her baby seemed fully mature, she was scheduled for elective induction of labor at 37 weeks. She was robust and healthy. Therefore this allowed her to have IVIG treatment to increase her platelet count, to prevent excessive bleeding at the time of delivery. With an uncomplicated vaginal delivery, since her platelet count was still in a safe range.Christy’s baby daughter was born that evening.

She had no bleeding symptoms, her platelet count remained very low. Throughout her pregnancy.

This time Christy had no headache or nausea, and the next day her platelet count was 74000 and it was 107000 on the following day -so she received no more IVIG.

Christy’s pregnancy was uncomplicated. Generally, her platelet count was 88000 at birth and ‘73000 101000’ over the next three days. When her platelet count was 3000, on September 19 she received a very slow infusion of IVIG, 8 gram/kg following medication with benadryl and hydrocortisone to prevent consequences. Christy and her baby went back home on September 28, and her baby’s platelet count became normal two weeks later. She and I recently gave a talk on ITP at her hospital. Now look, the important messages in Christy’s story are that you can have a happy, successful life, even with severe thrombocytopenia and even with occasional episodes of severe bleeding. That’s right! Christy’s part was terrific, My part was the usual doctor material on ITP. Therefore this has been Christy’s rationale for her participation in the current clinical trial with romiplostim.

Her determination to have a normal active life is only normal.

In this story, she may appear to been a rebellious adolescent but I doubt that.

Christy has had severe bleeding episodes in the past and even if her platelet count has not increased with romiplostim, I believe that And so it’s probable that the increased platelet production that is caused by romiplostim provides more platelets whenever loads of us are aware that there is some trauma or risk for bleeding -even though the platelets don’t remain in the circulation and get counted. Christy is calm and sensible, and I assume she was also calm and sensible as a teenager, years before I first met her. What are the alternatives? For instance, I still think her participation in the study is important for her, as I reckon participation in clinical trials are important for all patients, even if Christy’s platelet count has not increased with romiplostim treatment during this clinical trial. There is more info about this stuff here. Her calmness was also apparent in the story of her participation as the first human subject to be treated in a phase I clinical trial of a brand new agent for the treatment of ITP.

Continuous evaluations over months and years provide a very clear picture of Christy’s ITP.

I think she knows as much about ITP as anyone, hematologists included.

For true education about a chronic health problem, for the most part there’s no substitute for learning directly from a patient. Normally, this can be important information whenever future treatments can be considered. Participation in clinical trials is very important for patients with a chronic illness that has no effective treatment, similar to ITP. Only worse. Furthermore, the process is critical for progress to effective management, the patient may not benefit. Christy is a wonderful person. Anyways, most patients with ITP experience this sometime. For example, christy’s calmness comes through in her description of interactions with doctors who were unfamiliar with ITP and alarmed by her severe thrombocytopenia. Process can also be very educational and supportive for the participating patients. Christy has always been very calm and practical when it boils down to her ITP, and her advice for others with ITP continues to be to not get consumed by most of the possible treatment options. She certainly hasn’t let ITP dictate how she lives her life. Hopefully soon, she says, as I don’t is being getting any younger.

Christy continues to get her platelet counts when she has symptoms, and receives treatment when Surely it’s necessary. One of Christy’s next big plans is to have another baby. She stayed in the hospital for 3 days where she received 6 more blood transfusions and IVIG. Her only excursion outside of the truck they have been riding in resulted in her feeling so ‘light headed’ that it wasn’t long until she went back to the truck to rest. With that said, whenever screaming at her, and threatening to start CPR, the next thing she remembers is waking up to her frantic husband shaking her. She had three visits to the hospital and required six blood transfusions and three platelet transfusion during this time. Her platelets were less than 6000, are controlled since thence and she’s had no more serious bleeding and no more need for blood transfusions or IVIG in the past 2 years.

She wasn’t ready for this yet so the next option was high dose birth control pills to stop the bleeding and regular birth control pills to control future bleeding.

Even with premedication of Benadryl and steroids, she again suffered from the rturous aftereffect of headache and nausea from chemicallyinduced meningitis that IVIG infusions can cause.

He drove her to the hospital where her hemoglobin was extremely low at 8, well below the normal of 12g/dl, the result of continued vaginal bleeding. Her platelet count rose to above 100000 and her bleeding slowed to a manageable rate. Of course, only mild, scattered bruises or petechiae, She had no major bleeding episodes. I’m sure you heard about this. I’m sure that the day after Christmas, she was so tired of being stuck in the house that she decided to go with her husband to feed their cows. You see, it started about a month before Christmas when she started having multiple episodes of heavy vaginal bleeding. Her only serious bleeding episode since we last spoke was in November and December of She describes the episode as by far the worst bleeding that I’ve ever had. This is the case. Christmas came, and she spent dozens of her time in the house feeling because of this episode. At this time her platelet count was only 5000 and she could not avoid IVIG treatment. Now please pay attention. She was experiencing very heavy menstrual bleeding that will not stop. She required 5 IVIG days treatment in all. She gained 30 pounds in about two months, as an aftereffects. She did have lifespan are visits with her hematologist in Tulsa, blood tests any week.

She stopped taking it after two months, it had no effect on her platelets.

Once, while swinging at school, Christy fell and hit her head.

She was taking prednisone. At about 10000 to 15000, Christy made the decision to continue to do the things she loved, in spite the fact that her platelet count continued to stay very low. She played softball and basketball, even if it was against the advice of her doctor and parents. Nonetheless, she stayed home from school for the next week, her face bulged with a big bruise, tests showed that she had no bleeding in her brain. She simply explained about ITP and the doctor calmed down.

Problems should arise when she had her annual routine lab work at her hospital.

On one occasion, the doctor freaked out when he saw how low her platelets were.

They still always remark on how low her platelet counts are. Hospital staff became familiar with her ITP. By the way, a cesarean section can be done when the infant is severely thrombocytopenic, It’s a well-known fact that the standard practice is what was done for Christy. Consequently, these procedures are difficult and have risks, and often the platelet counts are not accurate.

Can be severely thrombocytopenic. Severe thrombocytopenia in infants born to mothers with ITP is rare, and the increased risks from cesarean section do not appear to be worth any possible benefit. Information included in this website is for educational purposes only. Basically the designers and operators of this site take no responsibility for the things you may do with this information. For advice on your unique medical condition, please consult your health care professional. By going further into this website you acknowledge that you have read and understood this disclaimer. About participating in drug trials. She was also intrigued by how few after effects patients were experiencing. Now regarding the aforementioned fact… Gradually, even with increasing dosage of the drug, her platelet counts have dwindled back down to around 2,In hindsight, she still thinks that participating in the drug trial was worth it, just on the chance that it nearly any few weeks.

Over the years, Christy had been asked to participate in various clinical trials of new drugs to treat ITP.

She would like to tell other ITP patients to do their homework when thinking about starting a brand new drug or participating in a drug trial.

Make sure the benefits and consequences. Recently, she and her husband have decided that are blessed to have their daughter, and given her trouble with menstrual bleeding, have decided to not have any more children. At first she was very optimistic that the drug will help her as it has had such high success rates in other patients, even patients with very prolonged, severe low platelet counts like Christy has had. Christy’s advice as long as there is not a whole lot to lose and there’s very much that as long as she thought she would want to have another child. Of course, christy was eleven years old in 1984 when her mother was diagnosed with Hodgkin’s disease.

Christy was taken to her family doctor.

At eleven years old, she was diagnosed with ITP.

Only a few weeks later Christy came down with strep throat. Otherwise, Christy was completely healthy. It was at this time that she also began to notice bruises under her waistband and on her legs. He did a blood count that revealed her platelet count was down to 2000. On p of that, bruises were all over her arms, They were everywhere, right after one evening at volleyball practice. Second blood count confirmed the low platelets. Basically the platelets were so low They thought they had done it wrong, says Christy. She has her platelet count done two to three times yearly, based upon how she feels and the presence of symptoms, like bruises. Generally, Christy responds, I don’t think about it unless symptoms arise…maybe twice a month, when asked how often she thinks about ITP.

Here when they appear the patient can get them checked out and deal with the situation immediately to prevent the significant poser from getting out of control since, Christy emphasizes that Surely it’s crucial that the patient knows the signs and symptoms of ITP. For almost two years now, Christy has had no health problems, nor bleeding episodes. While Thinking this way will ruin your lifespan, she may wonder if she’s having bleeding in her brain when she has a headache, she says. We don’t view it that way, iTP could have been ‘life threatening’. She still rides horses, ‘fourwheelers’, goes snow skiing, hunts with a rifle, and plays softball. At similar time, she won’t do things by herself.

Christy and her husband say, There is no need to take unnecessary risks.

You also look for to be aware of the possibilities on p of the signs and symptoms so you can be treated, she says, You can’t worry constantly.

Regarding her 17 years with ITP, Christy thinks that, The biggest thing is the fear of the unknown. She admits it has restricted was there’s a constant worry in the back of her mind. Christy quickly responds with not knowing how it was acquired, and not having any effective treatment, when asked about the most frustrating fact of her illness.

She also feels that this experience has helped her to learn a lot, meet so many interesting people, and that she is now more aware of herself and everything around her.

Christy likes to consider that Your attitude determines how you do.

She is aware of many changes that ITP has brought to her life. At these times when she has required treatment, she prefers to receive platelet transfusions rather than IVIG therapy to stop the bleeding. When she was a teenager, so it is since she experienced a very painful consequences of IVIG treatment, known as ‘chemical induced’ meningitis. Her bleeding stops within a couple of days and her life returns to normal, whenever she has a platelet transfusion.