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My Progress Report: Steven Schmidt
2001

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January 16 - The Hutch does not require bone marrow biopsies and aspiration after the first year unless there is an abnormally in the blood so I got off with just drawing some extra blood to send to them. Overall, I've been feeling OK. I'm still tired but my strength seems to be returning slowly. My weight was 145. Later this week, I'll get my latest creatinine level. My prednisone taper is down to 30 mg every other day and is having no major side effects. I will be having an exam of my Crohn's disease on Thursday under anesthesia. If everything looks good we will be shooting for early April for my surgery to reverse my Ostomy. Counts: WBC - 5,900; HCT - 45.0; Platelets - 177,000; ANC - 4,700
January 20 - My creatinine level from earlier in the week was 1.8. Not great but not too bad. Last night Jessica and I went ballroom dancing for about 90 minutes. I held my own which may indicate that my strength and stamina are returning.
January 22 - Today I met with my ophthalmologist and she confirmed that I am developing cataracts. The type of cataracts I have could progress rapidly so I may need surgery later this year. I just need to be aware of any changes in my vision over the next few months. Continued tapering of the prednisone may help slow the progress.
February 15 - My creatinine level remained the same and my weight increased just a bit to 146. The prednisone taper continues and is getting tougher. I'm down to 20 mg every other day and those days off are usually pretty bad. A lot of aches and pains. I have not gotten any results from the blood work we sent to the Hutch last month but should hear something next time I see my hematologist. Counts: WBC - 4,900; HCT - 38.8; Platelets - 195,000; ANC - 3,300
February 19 - Just a quick update. My surgery to have my illeostomy reversed is tentatively scheduled for May 14. I had wanted to have it done in April, but since I'm taking two college courses, I figured it would be better to have it after the semester is over.
March 7 - Didn't everyone start to think this site was getting boring? Well this should liven it up. Last Thursday I started feeling bad again (aches, nausea, diarrhea). I took the day off from work along with Friday. I had not eaten much since Wednesday afternoon. We increased my prednisone as we usually do when this happens but this time I did not start to feel better. Then over the weekend I started getting severe cramps in my feet, legs and hands. They were almost constant and unbearable. We increased the prednisone again and added Valium and potassium for the cramping. Still no better. By Sunday afternoon, I could hardly walk and just trying to brush my hair caused me to need to lay down. So, as our lovely Nor'easter snow storm moved in, we drove to the emergency room. I was started on hydration right away and they tested all of my counts. My hemoglobin was all out of whack along with other measurements. Here's the big one - my creatinine was 6.5!!! When I heard that I almost fell over. I was just extremely dehydrated. I was admitted and felt much better soon after with the fluids. I started eating again on the following day and was discharged the day after that. I was still having diarrhea but felt good and was eating. My creatinine was down to 1.5 when I left. There is still a lot of concern about the diarrhea. I am keeping up with my fluids but it's not easy. My prednisone is back to everyday again which may delay my surgery in May.
March 8 - Well, I went to the ER again today but did not get admitted. They ended up giving me a PICC line so I can hydrate myself for the next couple of weeks. They still do not know what is causing the diarrhea but they did find that my gallbladder is becoming calcified and has to be removed soon. A home health care nurse will visit me tomorrw to go over use and care of the new line. My counts were pretty good but not as good as when I was released two days ago. Creatinine was 1.8 but my weight dropped to 134.
March 12 - I have been giving myself IV hydration every night since Friday. Today I saw my hematologist. If anything good has come from my recent problems, it's that the increased prednisone cause my weight to go up to 151. My creatinine today was OK at 1.8. We're tapering my prednisone to try to get back to where I was before getting dehydrated. Right now I'm at 20 mg everyday. Counts: WBC - 6,100; HCT - 31.8; Platelets - 164,000; ANC - 4,200
March 19 - My PICC line is out and I'm feeling much better. I actually feel great. If it was warmer out I'd be out playing! My weight is slowly climbing and the prednisone taper continues.
March 27 - I had an ultra sound on Monday. It appears that my gallbladder is not calsifying, but instead I have a large, abnormally shaped gall stone. Since it is not bothering me we are going to leave it alone. Of course I've heard this information from every one of my doctors except the one that ordered it, my primary. For some reason we have not received any results from the blood that was sent to Seattle in January. They were supposed to perform a BCR-abl test. I am hoping that no news is good news, but my hematologist is going to follow up with them. I will get my lastest creatinine levels in a couple of days. My weight went up to I think 153.5. My predisone is back to 17.5 mg every other day. I will keep it there for until the weekend. Also, I met with my surgeon and we are still scheduling the reversal of my illeostomy for May 14. My surgeon thinks I will be out of work at least three weeks. I guess I can get some well deserved rest as my college semester will be over then. Counts: WBC - 3,200; HCT - 36.5; Platelets - 146,000; ANC - 1,800
March 30 - I finally got the results from Seattle and the BCR-abl tests were all negative. My creatinine level this week was 1.7. I've been really sore this week but I can live with that. Everything else seems to be going well right now.
April 13 - I was starting to feel not so good this week and before my appointment yesterday, I took an extra 1/2 dose of prednisone (with permission from the doc). I lost 3.5 pounds in the past two weeks. My counts were good. I'll get the creatinine next week. Counts: WBC - 6,400; HCT - 43.0; Platelets - 188,000; ANC - 4,300
April 24 - Not much to report. Weight 147. Still at 15 mg prednisone every other day. Creatinine level from last week was 1.8. Counts: WBC - 5,100; HCT - 43.0; Platelets - 106,000; ANC - 3,200
May 8 - I have actually felt very good for the past week. My appetite is strong and my energy has improved. My creatinine from las week was 2.0 which is higher than I'd like. This week my weight was up to 150. I will be tapering to 10 mg every other day on the prednisone this weekend. Counts: WBC - 4,400; HCT - 41.4; Platelets - 150,000; ANC - 2,800
May 10 - Creatinine from this week was 1.6. Much better.
May 16 - I had my surgery Monday morning and am home already. I had a good recovery. For those of you unfamiliar with my situation, I had a temporary loop illeostomy done in the Summer if 1998. This was to by-pass my Crohn's disease (of the colon) during my bone marrow transplant to limit any potential complications. Well after almost three years, my surgeon has reversed the ostomy. I was eating solids about 30 hours after the operation. Amazing, huh. I feel pretty good but am in a lot of pain. It is very difficult to get up and down and I will be out of work for some time while the wounds heals. I will have a visiting nurse come out once a day to change the bandage and check for infection. I am very please with the way things are going right now. I just need to drill into my head: "Don't push too hard!"
May 18 - I think I may have eaten solids a bit too soon after the surgery. I had a blockage develop and was pretty sure I would be going to the ER. But it passed early this morning and all seems better now. The pain was terrible at times. Today I am on a clear liquid diet. Tomorrow I might add some non-clear liquids and slowly get back to solids.
May 24 - My recovery seems to be going well. I got out yesterday for the first time since coming home. Had to go to the local lab to have my routine blood work. There is still some pain when I try to get around but for the most part, I am relaxing. I've been eating small amount of solids with no problems. I will be seeing my surgeon next week for my follow up.
May 30 - My follow up with my surgeon went OK. The incision is healing very well but I am still having an uncommon amount of pain. I had a blood test and urinalysis to rule out any infections. She may schedule a CAT scan if the pains continue. I will see her again in one week. My appetite is good.
June 5 - I saw my surgeon today. Everything looks pretty good. The pain has decreased a good amount but I will have a CAT scan just to check everything out and make sure all is ok. I've lost some weight and need to take in more calories. I plan on returning to work next Monday.
June 12 - Today was a visit with my hematologist. I'm having some body aches and fatigue, probably from the prednisone taper which is down to 7.5 every other day. My weight was 146 which is pretty good considering I am still recovering from intestinal surgery. Work has been tiring but I am sticking with it. Counts: WBC - 6,000; HCT - 34.2; Platelets - 205,000; ANC - 4,700
June 21 - My surgeon and I decided to do one follow up procedure which will happen next Monday. Nothing major so I wont get into the details. The prednison is still at 7.5 and depending how I feel this weekend, may go down to 5 mg.
June 25 - I had the procedure today with my surgeon. No big deal. I'm filling out a 20+ page questionnaire for the Hutch. It brought to my attention the fact that I may have missed a vaccination shot last year. I see the hematologist tomorrow and hope to remember to follow up with him about that.
June 26 - My visit with my hematologist went well. My creatinine from a couple of weeks ago was 1.5. Everything else looks good except it appears we missed my final vaccine shot last year for Hep B. I will get a shot next visit and we will do a test to see if I have the antibodies. If not, I'll have to get another series. Oops! My weight was 148. Counts: WBC - 4,500; HCT - 35.7; Platelets - 174,000; ANC - 3,700
June 29 - HAPPY BIRTHDAY TO ME! It has been two years since my BMT and things have been going pretty well.
July 9 - I saw my hematologist today. Actually I saw his partner but they're both wonderful. Counts and weight (148) were good. I'm getting closer and closer to getting off of the prednisone. I'm at 5mg now. The doctor gave me a prescription for 1mg tablets so I can taper a little slower. Since the reversal of my ostomy, I've had some problems but the doctors think that is to be expected and not GVHD. Hopefully that will clear up soon. Counts: WBC - 4,700; HCT - 38.2; Platelets - 196,000; ANC - 3,000
July 12 - I saw my primary today. I complained about my musce aches and he ordered a blood test to check out my testosterone and muscle enzymes. He was quite shocked to see all the scars on my midsection from the surgeries I've had. He was not too concerned about my slow progress following my last surgery. It is to be expected.
July 31 - Not much to report. Counts were a little low but nothing to worry about. My weight is maintaining. The muscle enzyme tests came back normal so the muscle aches are most likely attributed to the prednisone taper which is now down to 3mg every other day. Wont be long now before I'm off. I have to wait another month before we can check if I have the antibodies for Hep B. If not, I'll need to get more shots to be safe. Counts: WBC - 3,800; HCT - 38.8; Platelets - 186,000; ANC - 2,300
August 15 - I've had a bit of a cold for about a week. No fevers though. Even so, my counts are normal. I'm still having a lot of muscle pain thanks to the prednisone taper which is down to 2mg every other day. Weight is 146. Counts: WBC - 5,000; HCT - 40.6; Platelets - 181,000; ANC - 3,400
September 4 - Prednisone is down to 1mg every other day. Unfortunatly my weight is also down to 142. I had a bug this weekend which did not help. Next week I will be have outpatient surgery to check out my colon to see if Crohn's is back. Counts: WBC - 5,200; HCT - 40.7; Platelets - 197,000; ANC - 3,000
Please visit my page on Kelly Foy. There will be a spaghetti dinner fund raiser for her in October. She is eleven years old and was diagnosed with Leukemia. She will be having a BMT at Dana Farber in Boston and her six year old sister will be her donor.
September 14 - I had my surgery and colonoscopy yesterday. Everything went fine and there was no sign of Crohn's disease. My weight is still dropping and the muscle and joint pains are as bad as ever. I called the Hutch about them and they want to see my blood work but feel initially that it is a result of the prednisone taper. I will be going to 1/2 mg every other day this weekend. The Hutch has recommended daily stretching exercises to help. It's been a sad week. I found out that Dave Schramm who went through a BMT at the Hutch and I met online when I was diagnosed passed away. There is a link to his story on my CML links page. Please say a prayer for Dave and his wife Amy. They are two of the most wonderful people I've had the pleasure to meet online. And then of course the tragedies that occurred on Tuesday. It's a very somber time and a time to reflect on where our priorities are and what is important.
September 19 - Had another visit with my Hematologist. I will need a new series of Hep B immune shots since the last ones didn't take. My weight dropped to 140 mostly because of the surgery last week. Counts were abnormally low but the doctor is not concerned. My primary has not been returning my calls about the muscle and joint pains. Even though I love him, the clinic he works for is the pits. I have another doctor in mind and hope to meet with her soon. I plan to start yoga and/or Tai Chi soon to help with the muscle and joint pains. I cut my prednisone to 1/2 mg every other day. Another ten days or so and I should be off. Counts: WBC - 3,600; HCT - 39.3; Platelets - 154,000; ANC - 2,000
September 20 - Tonight I participated in the Leukemia & Lymphoma Society "Light the Night Walk". Three miles (in the rain) and it was a little tough but I made it. I'm sure I will be sore tomorrow. I proudly wore a sticker "I'm Walking for Dave Schramm". I think my folks and I raised somewhere around $750.
October 4 - This week I saw my surgeon and hematologist. Everything went fine with the surgeon. She increased one of my meds to help with the healing after all the surgeries my poor digestive track has been through. I've recently change my diet almost drastically. I've eliminate red meat and those of you who know me know that that alone is a major change. I've also given up hydrogenated fats which are found in most packaged foods. Thus, I do most of my shopping at the health food store. And I am trying to give up soda. Gosh, I must sound boring. This past Saturday was my LAST dose of prednisone. Tuesday & Wednesday were very tough (I had to leave work early on Wednesday). But Thursday was a good day. I saw my hematologist that day and my counts were low for the second time in a row. I still need my Hep B shots which should start in two weeks. Counts: WBC - 3,200; HCT - 36.4; Platelets - 146,000; ANC - 1,700
October 15 - Nothing special to report. Weight down a little to 141. I've felt really good most days since stopping prednisone but had a couple of really bad days. I hope they are far and few in between. My counts were still a little low but not by much. Unfortunately, I saw my hematologist in his "other" office and they forgot to bring the Hep B vaccine so that will start in a couple of weeks. Counts: WBC - 4,100; HCT - 37.2; Platelets - 152,000; ANC - 2,500
October 17 - I saw my primary today. We discussed a lot. There was some confusion about my Hep B referral and we got that taken care of. He also gave me a flu shot and the first of two MMR shots. I will be having my yearly bone density scan in the beginning of November. I will get a blood test done tomorrow to check the levels of lipids (cholesterol & tryglicerides), testosterone, thyroids, B12 and others. Next Monday, I will see a cardiologist to get set up with a heart monitor to wear for 24 hours and have a little daily diary book to take notes of how I feel at certain times of the day. My heart rate has been high since the BMT so we want to check it out since I am starting an exercise program.
October 22 - I have a couple of things to report. First of all, the pasta dinner fundraiser for Kelly Foy appears to have been a success. We don't have an exact count of how much we raised but the turnout was great and everyone seemed to have a good time. I was sore yesterday and today but it was well worth it. Second, I was allowed to stop my Acyclovir medicine. Stopping though can lead to a sudden occurance of shingles so I need to be careful. That leave just one medication left which I should be able to stop in 5 months. Lastly, I saw a cardiologist today and am wearing a heart monitor for the next 24 hours. It's kind of cumbersome but not too bad. It's just to see if they find anything wrong with the heart since my heart rate is pretty high.
October 25 - My primary called me at home with the blood work results. Great numbers: cholesterol 133, HDL 36, LDL 75, triglycerides 132, testosterone 629, free testosterone 9.7, plus my thyroid, muscle enzymes and B12 level were all normal. Now I am just waiting on the results from my heart monitor.
November 2 - This week I saw my hematologist. I finally received my first Hep B shot for the latest series. My counts were low again but not very. We will continue to watch them. My weight climbed a little to 142. I also had a bone density scan but no results from that yet or the heart monitor. Counts: WBC - 3,200; HCT - 35.5; Platelets - 128,000; ANC - 1,500
November 9 - We'll it's been a bad week for me. I had no doctor appointments scheduled yet I talked to every one of them. My spirits had been way up because I was really taking care of my self, living a healthy life style, staying active, etc. Now, another set back and my spirits are crushed. I started losing fluids (diarrhea) on Monday. Tuesday was a terrible day. I lost 7 pounds those two day, mostly in fluids. Talked to three of my doctors and decided not to go to the ER just yet. Ran some cultures and they all came back negative. Started my prednisone again at 20 mg daily and also flagyl in case of a bacterial infection. Not much relief yet. Lost a total of about 10 pounds this week. I haven't eaten much the past three days. They don't know yet what is going on. My primary has tried to call me twice today and I expect him to call me tonight. I'm actually at my lowest weight since I was an early teenager. I am off to go watch some sitcoms that I taped during the week. Nothing like a good dose of comedy to lift the spirits. Hopefully, I will have better news to report early next week.
November 11 - Just a quick note. Since I last wrote, my fluid loss has stopped and I've started to gain some of that lost weight back (4 pounds since three days ago). I am eating again and am getting more energy. Not sure if the Flagyl or Prednisone had anything to do with it or if it was just a virus that ran it's course.
November 12 - Just another quick note. Everything is going great now. All symptoms have dissappeared and I feel very good. I will stay on Flagyl for another 5 days just to be sure.
November 25 - I apologize for the lack of updates over the past couple of weeks. It's been a very busy time for me. I am back on 5mg prednisone daily trying to control the intestinal problems I've had recently. Things are going well but not entirely perfect. Time will tell. My weight has, at worst, been maintained. I am eating very well and exercising almost daily. I feel good and have a decent amount of energy. All of my recent tests have been good and there has been no explanation of the cause to my recent intestinal problems. I am still seeing my doctors and am almost caught up on my immune shots.
November 29 - I saw my hematologist today and got my second Hep shot. One more but not until April. I'm still on the prednisone and will be until at least the middle of next week. My weight is down a bit (138) but I have also been exercising. Counts: WBC - 3,600; HCT - 38.8; Platelets - 146,000; ANC - 2,900
December 21 - Shame on me. I apologize once again for being not so up to date on my site. It is just so busy this time of year and yet no much has happened medically. Here is the latest. The only doctor I have seen is my Gastroenterologit and he started to taper my prednisone which will end this weekend and he put me on a new drug. It is called Entocort. It is a new drug used for Crohn's disease, which you all know I no longer have, but it also treats other digestive problems which come and go for me. Since I've been on it, my energy has increased and all of the muscle and joint pains have disappeared along with eliminating most of the digestive problems. So I am doing quite well these days. I will be seeing two doctors again over the next week so I will update again soon. I promise.
December 27 - Nothing new to report. I saw my hematologist today and all is fine. I did see my primary last week about a problem with my foot. I have a ligament that is pulling or it could be spurs but I really don't think so. No big deal. Counts: WBC - 3,900; HCT - 44.0; Platelets - 133,000; ANC - 3,000
January 18 - I've had a painful lump in my chest recently. My primary did some blood tests and they were fine. I am scheduled to see a surgeon next week to see if it should be removed. My primary is not concerned but we will wait to see what the surgeon has to say. Everything else is fine including the pain in my foot which I do believe are bone spurs now. There will be more updating next week as I believe I have 4 appointments with my doctors.

This page last updated on January 18, 2002