Monday, August 6, 2007
August 6, 2007
Kayaking at the cottage in Maine and water aerobics in my home pool have made me feel better. Those were both great forms of aerobic exercise that were easy enough for me to do to get my endorphin level up. When it's raining, my back-up is my treadmill, but I don't like it as much. My new goal is to go to the gym 3 times per week.
Friday, August 3, 2007
July 26, 2007
Dr. Kerr and Dr. Zorn switched me to 75 mg Lyrica BID, instead of Neurontin 800mg TID. It seems to be working better for me. Now I don't wake up in the middle of the night needing more pain meds to sleep.
7/21/07
I had a series of blood tests done today. It will be interesting to hear what Dr. Kerr has to say about the results.
Wednesday, July 18, 2007
June 18, 2007
Dr. Brodsky switched me to the anti-biotic Dapsone to take Monday, Wednesday and Friday for 2 months instead of Bactrim. I tried my first dose and did not have any side effects. Also, I called to schedule my 3 month follow-up with Dr. Kerr for late September. Dr. Hammond will mail me the list of follow-up tests to do locally and the long term protocol follow-up schedule so I'll know what to plan for. Also (as an FYI for future patients), I did not lose 100% of the hair on my head maybe because I had very thick hair to start with. As a result, I can do a Donald-style comb-over and have little bangs to show under a hat. Plus I have a bit of hair in front of my ears and the lowest part behind my head, and with a hat, I can be more comfortable without a wig. So, the free hair buzz (to baldness) that is offered at the Image Recovery Center may not be so helpful in the long run. My lint roller kept up with the very quick hair loss that only lasted 5 days.
I got a delivery of hats and a gorgeous wig from the American Cancer Society's TLC Catalog. The wig is better looking than my original hair was and it doesn't frizz in the summer heat.
I got a delivery of hats and a gorgeous wig from the American Cancer Society's TLC Catalog. The wig is better looking than my original hair was and it doesn't frizz in the summer heat.
Sunday, June 24, 2007
June 17, 2007
I'm feeling a little stronger today. After getting up at 8 am, I felt good enough to do more organizing of my kitchen and family room. It is so nice to feel that my home is back under control again. The boys went up to the cottage in Maine to get it opened for the season. Jessica stayed home to keep me company, since I didn't feel ready for a weekend away (my first weekend after finishing my protocol). In the afternoon (after a long break reading a magazine), I felt good enough to do yoga stretches and some of the exercises that the hospital Physical Therapist taught me. I used 5 lb weights to work on my biceps and triceps, plus I did balance exercises that focused on strengthening the calf and thigh muscles. More good news: my stomach and intestines are back to normal. I enjoyed pizza for lunch with Jess. I did have to make a call to the IPOP today because I developed a rash last night after my first dose of Bactrim. The doctor (available whose name I don't remember) said it sounded like a reaction to the drug and not to take today's dose, but to use Benedryl if it got too itchy. He also said to check in with Dr. Brodsky to see what he'd like me to switch to. So, I left him a message. It is about 90 degrees outside, so I'm blasting the air conditioning and taking it easy for the rest of the day.
Friday, June 15, 2007
Thursday, June 14, 2007
Now, I'm back home hanging out with my dog, Teddy. I slept late, then we went downstairs to survey the "tornado" that hit while I was gone. After tossing out some of the junk mail and organizing some of the mess, I realized how exhausted I really am and that I need to take my time recouperating and resting.
The thing that really seems to be slowing down my recovery is the continuation of the major stomach and intestinal cramps. Unfortunately, the severity of the intestinal distress is due to the combination of the HiCy, IV antibiotics given during the rehospitalization for 6 days of fever of unknown origin and the MISTAKE where the MD intern gave me a magnesium citrate drink before starting the Zocyn and Vancomycin to cover anything that might be causing the fever. As I mentioned in earlier posts, my fever was not tied to anything except the classic neutropenic state and as the Infectious Disease doctors speculated, possibly induced by the necessary growth factor injection of neupogen (started on the day I first developed a fever). The lesson that I learned the "hard way" is that just because a doctor is in a white lab coat (with his name followed by MD), it doesn't mean that he has much knowledge or experience with this specialized HiCy protocol.
A nurse with lots of HiCy experience (that worked day 3-5 of my 6 day hospital stay) told me that the magnesium citrate should never have been given to me. I unfortunately was re-admitted on a Saturday, which is as bad as being admitted at night, because the staffing is severely limited and in my case, the nurses and MDs seemed to know less about the HiCy protocol than me. Also when I would buzz the night nurse to ask for even just a glass of water, it would often take them up to an hour to show up.
This should change over time as Dr. Brodsky takes over more beds on the fourth floor and uses more of his HiCy trained nurses for weekday, weekend and nightly coverage. My advice to anyone who goes through this protocol is to always have a close friend or family member with you (in and out of the hospital). They can even get you a drink. When you go for the IPOP visits, the nurses are well qualified, so in general, you can trust their judgement and decisions. But, in the hospital you must not be intimidated by MDs or any staff. Also, it's ok to ask how much experience they have with the HiCy protocol. It can't hurt to have someone you trust "google" the drug or treatment (you will get during a rehospitalization to check whether the doctor actually made a good choice). "Hindsight is 20/20". Had I known the magnesium citrate would dramatically increase the intestinal damage (already slated to begin from the HiCy and IV antibiotics), I would have refused to drink it. Another FYI, that I learned (from the rehospitalization experience) is that the lowest level MD, with the least amount of experience/closest to graduation from medical school is the MD that the higher level doctors let make the decisions (maybe to help them to learn from their mistakes) including ordering meds and doing discharge orders. An example of how alert you (and your caregiver) must be is checking discharge orders. When I was discharged with severe intestinal cramps (and diarrhea), my discharge orders included prescriptions for two laxatives. That seemed incredibly negligent to me (and made me question, the safety and intelligence of anything else on the discharge orders) and it made me wonder why the higher level attending physicians didn't catch that or the magnesium citrate.
The bottom line is that the HiCy protocol has been shown to be an amazing, life improving treatment, like no other available. It's just that a patient has to be completely knowledgable about everything that is supposed to happen for whatever scenario may occur.
The thing that really seems to be slowing down my recovery is the continuation of the major stomach and intestinal cramps. Unfortunately, the severity of the intestinal distress is due to the combination of the HiCy, IV antibiotics given during the rehospitalization for 6 days of fever of unknown origin and the MISTAKE where the MD intern gave me a magnesium citrate drink before starting the Zocyn and Vancomycin to cover anything that might be causing the fever. As I mentioned in earlier posts, my fever was not tied to anything except the classic neutropenic state and as the Infectious Disease doctors speculated, possibly induced by the necessary growth factor injection of neupogen (started on the day I first developed a fever). The lesson that I learned the "hard way" is that just because a doctor is in a white lab coat (with his name followed by MD), it doesn't mean that he has much knowledge or experience with this specialized HiCy protocol.
A nurse with lots of HiCy experience (that worked day 3-5 of my 6 day hospital stay) told me that the magnesium citrate should never have been given to me. I unfortunately was re-admitted on a Saturday, which is as bad as being admitted at night, because the staffing is severely limited and in my case, the nurses and MDs seemed to know less about the HiCy protocol than me. Also when I would buzz the night nurse to ask for even just a glass of water, it would often take them up to an hour to show up.
This should change over time as Dr. Brodsky takes over more beds on the fourth floor and uses more of his HiCy trained nurses for weekday, weekend and nightly coverage. My advice to anyone who goes through this protocol is to always have a close friend or family member with you (in and out of the hospital). They can even get you a drink. When you go for the IPOP visits, the nurses are well qualified, so in general, you can trust their judgement and decisions. But, in the hospital you must not be intimidated by MDs or any staff. Also, it's ok to ask how much experience they have with the HiCy protocol. It can't hurt to have someone you trust "google" the drug or treatment (you will get during a rehospitalization to check whether the doctor actually made a good choice). "Hindsight is 20/20". Had I known the magnesium citrate would dramatically increase the intestinal damage (already slated to begin from the HiCy and IV antibiotics), I would have refused to drink it. Another FYI, that I learned (from the rehospitalization experience) is that the lowest level MD, with the least amount of experience/closest to graduation from medical school is the MD that the higher level doctors let make the decisions (maybe to help them to learn from their mistakes) including ordering meds and doing discharge orders. An example of how alert you (and your caregiver) must be is checking discharge orders. When I was discharged with severe intestinal cramps (and diarrhea), my discharge orders included prescriptions for two laxatives. That seemed incredibly negligent to me (and made me question, the safety and intelligence of anything else on the discharge orders) and it made me wonder why the higher level attending physicians didn't catch that or the magnesium citrate.
The bottom line is that the HiCy protocol has been shown to be an amazing, life improving treatment, like no other available. It's just that a patient has to be completely knowledgable about everything that is supposed to happen for whatever scenario may occur.
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