When I was 52 years old, I woke up one night in late October, 2000 with blood in my mouth. Turns out it was a very small place on an upper gum which just would not stop bleeding. It was not profuse...just a trickle which I could not get stopped for almost 2 hours! I tried everything including an ice pack and finally got it stopped. The next day I could not get to the doctor's office. The third day, right before lunch, I noticed blood in my mouth again and two very dark elliptical bruises under my triceps. I thought the bruises were caused by my having to lie on the boat dock to cover my jet ski. Anyway, I left work immediately and went to see my regular family doctor!
The doctor presumed my platelet count was low. They drew blood for a test and sent me back to work. I'll bet I wasn't back at work more than a 10 minutes and my doctor called me using his personal cell phone. He explained my platelet count was down to around 1,000. He said I needed to leave work immediately and check into the hospital where he had already made arrangements to be admitted normally. During that 4-day stay, I received 20,000 ml of Gamma Globulin and met the guy who would be my Oncologist who diagnosed me with ITP. During a follow-up visit at his office a few days later, my platelet count was up to 209,000. At a recheck just one week later, my count had dropped to back to 14,000! So, I was put back in the hospital and given 1000 ml more of the Gamma and another drug called WinRho. Upon release about 5 days later, my platelet count was only at about 25,000. Another blood test several days later revealed my count was back down to 10,000. From almost the beginning of my treatment, I was placed on 100 mg. per day of that terrific drug we all know and love, prednisone.
So this time I was given a bone marrow biopsy, put BACK in the hospital and got a liver/spleen scan along with a chest x-ray. The bone marrow biopsy was done on Halloween and the staff nurse assisting my doctor was dressed as a witch. Well, at least I had SOMETHING to laugh about at that point! All these tests were done to ensure I didn't have some type of cancer. The doctors (my Oncologist and my surgeon) reviewed my case and decided it would be in my best interest to proceed with removing my spleen. Please note that doctors do not take the easy way out and remove organs just because it’s convenient. Because I responded, at least for a short time to the drugs I was given in the hospital, they both agreed I would be a good candidate for a splenectomy
I had the splenectomy on November 11, 2000, using a laparoscopic procedure. I would highly recommend having the splenectomy done that way if your surgeon is trained to do it that way. You end up with significantly less scaring. I was released in 2 more days and I was already getting my energy back. The doctors had already begun weaning me off the prednisone and that had to be done slowly and very carefully. My bruising, including that from the surgery, started to fade within the first week I was home. My platelet count rose to 376,000 about 2 weeks after the surgery and spiked at 515,000 around Thanksgiving of that year.
So my thanks go to God, the doctors, all my family and friends for helping me get through this very horrible and humbling experience of ITP. That was certainly a Thanksgiving I'll never forget!
I wish everyone with ITP will be as fortunate as me regardless of the treatment used.
Addendum #1:
June, 2001: I just wanted to let everyone know how things were going at this point. It's been seven (7) months now since I had my spleen removed. As of my annual physical a few weeks ago, I'm at 400,000 platelets which is on the high side of "normal"! I must again attribute my continuing success to God, my Surgeon, my Oncologist, my supportive family and great friends. My doctors have recommended I take a baby aspirin every day.
Addendum #2:
July, 2004: Well, I'm 56 now it's now been over 3 1/2 years since I've had the splenectomy. I'm doing just fine and still take the baby aspirin every day. I'm told that, as of my annual physical a couple of weeks ago, my platelet count was about 300,000. It's been holding there for the last couple of years! I understand the normal count is from 140,000 to 450,000, so I don't worry about it anymore. I'm not on any special diet or exercise routine, but I am trying out the low carbohydrate thing since that seems to work better for me. I don't want to take my health for granted. Before they took my spleen, it was the normal practice to get vaccinated for a few major diseases and I'll have to get those again in a few years just to be on the safe side. I also take the flu shot each year, but I'd being doing that anyway since I'm over 50. I will have to say that, anytime I get a bruise, I still get uneasy for a short time. You just can't go through ITP, remember taking all those drugs, being in the hospital, feeling so alone, having surgery, and expect to never think about it once in awhile.
Addendum #3:
November, 2005: I waited a little longer to post this installment since this is a very important milestone for me, folks! It's now been exactly 5 YEARS since I've had the splenectomy. The doctors used to tell me that, once you make it to 5 years, you're pretty much "cured". Well, there is no certain cure for ITP yet, so I am still very careful not to take my health for granted. I try to stay away from people who have colds, flu, coughs, sniffles, etc. and I avoid going out in bad weather. I still take that flu shot each year, and I just got vaccinated again for pneumonia. I'm still doing just great and my platelet count remains in the 300,000 range. I've been holding in that range for the for the last 4 years. I really only think about ITP when I get a bruise from anything, or when I get letters from individuals or families where ITP is affecting someone. I am not a doctor, so I can only share what happened to me personally. Yet, I find everyone wants to hear more about me and my progress. I am certainly a resource they can use since there's still not too much information out there on ITP even after all these years. Again, I sure wish I would have had someone I could have written to while I was going through mine. I'm sure it would have made things easier for me emotionally. Everyone's case is different, yet we have that common bond. Speaking of doctors, I would like to give honorable mention and recognition to my 3 doctors. My family doctor is Dr. William D. Long, my Oncologist was Dr. H. Grant Taylor, and my Surgeon was Dr. Robert C. Monson; all with offices in Charlotte, NC. To me, Dr. Monson was the one who actually saved my life! And, still today, I'm so pleased that he was able to perform my surgery laparoscopically which severely reduced the scaring to just a couple of small places that are hardly noticeable. In closing for this time, let me also express my thanks to all those who have written to me over the years. I appreciate hearing from you, and I am happy I am still here so I can add any value or advice for you anytime.
Addendum #4:
December, 2006: Now at 58, I am very blessed to tell you that I am still doing well and have had no problems so far since my surgery six (6) years ago in November, 2000. My platelet count remains in the 350,000 range. I have lost some weight on my own version of the low carbohydrate diet, but I still enjoy good old southern cooking, chocolate, and ice cream now and then! I was careful to get all of my doctors' approval before beginning the diet, and that is what everyone should do. I still do not take my health for granted in that I am very careful to avoid others who are ill and I even try to stay out of any bad weather. I did get vaccinated again for pneumonia last year since I felt like it was time and since they were offered at the same time as the annual flu shot clinic. I continue to hear from people all over the world who have read my story and that is just awesome! All have some form of ITP, and some are the parents or relatives of someone with ITP. It is good to know that I can still add some value to those who really have no one else they can relate to about this disorder. It is my good fortune to have become friends with some of the folks that write to me, and we have stayed in touch for years. During this holiday season, I will keep everyone with ITP and their families in my prayers. I hope someday soon there will be a cure. Also, I want to wish anyone reading this a very Merry Christmas and a most prosperous and healthy New Year!
Addendum #5:
November, 2007: I'm now 59, still going strong, and it's actually been seven (7) years since my surgery in November, 2000. I feel so blessed to have had no further problems associated with ITP. I had my annual physical in September and my platelet count was 303,000. I have gained four (4) pounds, but I am working on losing them and hopefully some more. My version of the low carbohydrate diet still does well for me. But, lately I've been eating foods not good on the diet due to some stress in my life. I love those crispy Cheetos and most any kind of M&Ms...especially the pastel ones sold in the spring! I think, since the stock market has been very volatile lately, that may be what is causing me some anxiety. I recently went to a Cardiologist for an EKG, blood enzyme test for the heart, and even had a regular Stress Test. Thank God everything was fine! I think I need to just chill out and find something else to do for awhile even though I'm still making money in the market. I did get a nose bleed back in September, which of course scared me. But, as it turned out, it was simply a weak blood vessel in one nostril and the doctor attributed it also to the very severe dry weather we had here in North Carolina. Anyway, after having the vessel area cauterized, I've had no further problems with it. I took the annual flu shot a couple of weeks ago to get that out of the way. I think it's good for most people; especially if you're over 50, to take it every year. I still hear from people all over the world who have read my story here on the website. This year, I've heard from a couple of folks who seemed to have contracted the ITP symptoms back after being rid of it for many years. I wrote them back and asked them to keep me posted on their condition so I can maybe learn what to do if I ever have the problem again. Also, this year more than any in the past, I've heard from people who just wanted to tell me their good news and offer their appreciation to me for my taking the time to post my progress. That helped enforce that I may be adding some value to those with ITP and can at least be an honest resource for them. As always, I encourage most everyone who writes to me to also write to the PDSA website to get accurate information on any blood disorder. I think Joan Young, and her staff, do an excellent job with keeping apprised of the latest treatments for us! I also keep all those people with ITP, and their families, in my thoughts and prayers every day. I also pray that the researchers will find us that certain cure for ITP so we'll all never have to worry about it anymore someday soon. Please accept my best wishes to you all for a blessed Thanksgiving and Christmas holiday season! And, I wish everyone the most healthy and prosperous New Year EVER!
Addendum #6:
November, 2008: Yep, I reached the big 60! As of my annual physical a few weeks ago, my platelet count is still 303,000. It's now been over 8 years since I had my splenectomy. So, I continue to be blessed and thank God for my health. After I wrote the addendum last year, my anxiety flared up. My doctor put me on Zoloft and it helped some. But, in my opinion, it was just about as bad as prednisone given the way it made me feel. And, I had already gone to the Cardiologist and discovered I had no heart problems. So in March of this year, I made up my mind that things were just not bad enough for me to stay on the Zoloft and I stopped taking it. After that, I actually started feeling like my old self again and that was great! I continue to use my version of the low carbohydrate diet and I've only gained a couple of pounds in a year. I'm sure, if I would just stick to the diet, I could lose at least 25 pounds in a year. Oh, and I've added the fish oil vitamin to my daily regimen. I haven't had any nose bleeds since I got the blood vessel in my nostril cauterized last year. And, I just got my annual flu shot a couple of weeks ago again. So, it's been a good year for me even with the stock market taking falling so much! I've not heard from as many people this year as I had in years past, and maybe that's a good thing. But the ones I did hear from seemed to appreciate my input and perspectives about ITP. I hope everyone will continue to support PDSA as I feel they are a very valuable asset for all of us who have, or have had, blood disorders. I wish Joan Young all my best in her retirement, and my guess is she is still around helping the staff. I will continue to keep all those with ITP, and their families, in my thoughts and prayers. And again, I extend all my best wishes to you and your families for a blessed Thanksgiving and Happy Holidays!
Addendum #7:
December, 2009: First of all, please allow me to apologize to anyone who has tried to write to me this year anddid not get a response. I was forced to change my email addressin the fall and did not notify the PDSA Web site folks to change itat the end of my storyuntil fairly recently. So, please write to me again and I promise to answer you. It is now over 9 years since I had my spleen removed and I have had so much to be thankful for at Thanksgiving this year. I'm doing just fine, andthere is no question that I am very blessed by God for my continued good health. Also, my platelet count is now up to 325,000 as of my last physical in October. I am pleased to report that I have not had any nose bleeds this year so far! I took the annual flu shot a couple of months ago, but await the opportunity to get the H1N1 vaccination whenever it becomes available to me. I think I'm due for another pneumonia booster shot next year. I've added Vitamin D to my daily regimen after I saw how beneficial it should be on the Dr. Oz show. My weight went up a little because I did not stay the course on my version of the low carbohydrate diet this past year. However, as of 11/4/09, I am back on it with a goal to lose 30 pounds by the end of one year. So, wish me luck! I also keep those exposed to ITP, and their families, in my prayers. And, again,here's wishing all of you a very Merry Christmas and the best New Year ever!
Addendum #8:
November, 2010: Well, it's now been ten (10) YEARS since I had my spleen removed! I am so blessed and, again, I will have special thanks to offer this Thanksgiving! My health continues to be strong with no concerns or nose bleeds. Any bruising I have had cleared up normally. At my last physical a few months ago, my platelet count was at 312,000. This year in August, I changed from concentrating on my version of the low carbohydrate diet to more of a low fat diet since I did not reach my goal to of losing 30 pounds last year. I'll have to say this diet is a lot more fun and diversified than the high protein diet. I have lost about 14 pounds since I wrote my update last year, and my goal this year is to have lost a total of 25 pounds. My insurance premiums are going to rise $68.00 a MONTH for 2011 or 24.9% for the same coverage! The increase is just due to medical costs rising and has nothing to do with ITP or any health issues. So, if anyone out there has any recommendations for more affordable health and dental insurance, I will welcome them. I continue praying for those who have ever had ITP and their families every day. I also pray that the researchers will ultimately find a real cure for us soon. Happy Thanksgiving, Merry Christmas and all my best to everyone for a blessed and very Happy New Year!
Addendum #9:
November, 2011: What a blessed, and spectacular, year I have had! I met a super nice lady, Sarah, from the Philippines back in 2008 while she was visiting here. She had to return to the Philippines to comply with her visa requirements at the end of that year, but we kept the relationship going over Skype, emails, regular letters, and some phone calls all this time. We became engaged, and I began working on the finance' petition to bring her back over to the US in August, 2010. I am pleased to report that we were married here in July of this year! Once again, I will have very special thanks to offer this Thanksgiving! As for my health, my platelet count was at 281,000 as of my physical a few months ago and I have not had any problems associated with ITP. I am still taking the flu shot each year, and I plan to take the pneumonia booster this year again. My daily prayers include those who have ever had ITP and their families, along with anyone who is sick and not feeling well for any reason. Here's wishing you a super Thanksgiving, a Merry Christmas and my best to everyone for a blessed 2012!
Addendum #10:
December, 2012: This year has been another really good year for me. At my last physical a few months ago, my platelet count rose some to 298,000! That may not be significant to a physician, but to me it's a real blessing and helps me know my system is still doing just fine 12 years after having the splenectomy. My general health remains well, I have had no bleeding episodes again this year, and I am still not on any special diet. Yes, we took the annual flu shot a couple of months ago just to be on the safe side as they indicated the strain was going to be strong this time. As a side note Sarah's 2 boys, ages 19 and 17, arrived from the Philippines a few weeks ago. That's one of the reasons I'm a little late with this update. They are very nice young men, and just love America. I will continue to pray for those who have ever had ITP and their families. I have heard from some really nice folks who have ITP this year, and I hope I have been supportive and helpful to them. Here's wishing everyone a very Merry Christmas and a healthy, Happy 2013!
Addendum #11:
December, 2013: I am again blessed with another good year. My platelet count rose again to 313,000 at my annual physical in October. That is right in line with what is considered "normal" for a human, and it's been 13 years since I had my spleen removed. I'm still in good health, have had no bleeding events this year, and I'm still rocking along as far as the diet goes. As for our personal life, a relative of Sarah's who lives in the Philippines was affected by the huge typhoon that hit there and devastated the region. She lost her house and everything in it. Fortunately, she is alive and going to try and rebuild. We pray routinely for those poor people in the Philippines. And, of course, we continue praying for anyone and their families who is going through ITP. We feel strongly that God is going to help the researchers find a cure. We accept our best wish for another Merry Christmas and Happy New Year! I would love to keep hearing from those who may be affected by ITP, and I wish you improved health and a long life.
I would love to continue hearing from others with ITP. ITP people are very nice and it's good to have someone out there that can relate to what you’ve been through. My email address is: clk430c@gmail.com
-- Bill