ITP Personal Stories

Mr. Bill's Splenectomy Success

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!

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@alltel.net

-- Bill

See www.itppeople.com/low-platelets/index.html for a list of diseases that present with low platelets.