So what the blog title says is questions I’ve been asked by several people since returning home from Russia. Everyone wants to know what paperwork you get to take home with you when you leave Russia, what meds that I was sent home with, what meds are recommended and for how long, when to get blood work done, and what other things that Dr. Fedorenko recommended in my final talk with him before I left for home. So this blog post will cover all that for those that are curious.
First off I’ll discuss the paperwork that I got from Dr. Fedorenko to take home with me. It is given to you in a very nice folder that has all the hospital information listed on the inside and includes a business card with all of Dr. F’s info on it, including his cell phone number and email address Included in this folder are 3 copies of your medical report in English from Russia, one for you to keep, one for your doctor, and one to have as a spare or to give to your hospital or another doctor. This medical report lists the entire HSCT treatment protocol for you, including the exact doses of the meds given to you based on your weight. It also lists all oral medications you were given while in Russia and lists the medications you were sent home with. It also lists other basic medical information from all the testing done before the actual HSCT treatment itself was done and what followup care should be done. It is very thorough and very professional. This folder also includes a copy of your contract for the HSCT procedure as well as a detailed receipt for your payment for treatment. You also are given 2 papers, one in Russian and one in English that states that it is safe for you to travel, lists your medical condition and the HSCT procedure; this is something for you to carry with you to the airports on your way home to show at the airplane gates in case they question you about whether or not it is safe for you to fly. I personally never was asked to show my paperwork on the way home, but I’m guessing if you are using wheelchair assistance or in a wheelchair, they may be more inclined to ask to see proof that it is safe for you to fly. You also are sent home with the both a CD of your MRI scans as well as hard copies of your MRI scans in a giant paper bag. I will admit when I was handed those I was a bit confused on how I would fit them in my already packed stuffed full suitcase, but I did manage to get them packed. But here are some pictures of what the folder itself looks like and the MRI scans.
Now onto what medications are you sent home with and what does Dr. F currently recommend for patients. This has changed over time and now Dr. F recommends just taking an anti-viral medication, Acyclovir, for 4 weeks after you get home. He feels that is enough, but he did say it is up to the individual if they want to take other medications on top of that and if they want to take medications for a longer period of time. That is something that if a person wants to do, they can discuss it with their doctor when they get home and get prescriptions for it. I know on some groups people recommend taking meds for 6 months or 12 months, other doctors have different time frames for medications as well. I personally am going to follow Dr. F’s recommendation and just take the 4 weeks of meds he sent home with me. And yes he does send you home with 4 weeks worth of meds. The main reason people do take Acyclovir for longer periods of time is mainly to try to prevent shingles, because if you had chicken pox which most people in the US have had, you can get shingles and with a weakened immune system you are more prone to getting it. Although there is a debate going on whether or not the medication actually will prevent shingles or not as many people on the medication still get shingles, so it’s hard to say how effective the med really is for preventing shingles. He did used to also prescribe Bactrim or other antibiotics as well but found that people still tended to get certain infections like UTIs while on the medication and then it made the infections harder to treat because the people were then immune to quite a few of the common antibiotics, so he feels that not taking it is better and then just take something if you happen to get an infection. But that is something that if you feel you want to take you can talk to your doctor about once you get back home. But here are pics of the meds I was sent home with which was 4 weeks worth of Acyclovir:
Now when to get blood work done. I think this may vary patient to patient depending on how their numbers look when they are discharged from the hospital. For me I was told to have my blood work done 2 weeks after discharge and 4 weeks after discharge. Basic complete blood work that gives all the necessary numbers. Dr. F wanted those results emailed to him so he could see how the counts were. After the 4 weeks test results, Dr. F will recommend how often to do future blood testing. Now some people opt to do more blood testing when they get home for their own personal records or perhaps on the recommendation of their own doctors, personal preference. Also it is personal preference whether to see your regular family doctor/general practitioner or a hematologist, either can do the required blood work and read the results. For me personally I am seeing my family doctor for my blood work. If my numbers are not looking right then I can be referred to a hematologist, but to start with I plan to just see my family doctor. I also opted to have blood work done at the 1 week mark just for my own personal records.
I know there is a ton of discussion on the various HSCT groups about what you can and can’t do after the HSCT procedure, how long you need to wait to eat certain things, what water can you drink, be around animals, change diapers, wear a mask in public, etc. It sounds like all doctors have their own opinions on that and certain people really have their opinions on it and anyone who disagrees gets flamed on certain HSCT groups. Now as for what Dr. F says. He isn’t as strict as some doctors and believes that you need to gradually build up your immune system. He feels it is safe to be around your own family and pets without a mask on, as long as they aren’t sick. He also feels you can resume regular life activities around the house as long as you take proper precautions, like frequent hand washing, keeping things clean, using hand sanitizer, etc. He recommends eating a healthy diet but avoiding fresh fruit and veggies, unless it comes in a peel, for at least the first month and perhaps longer depending on your bloods. Many people opt to wait 3 months to be safe. It also depends on the produce, I inquired about home-grown produce irrigated with well water that has had nothing put on it and he said that would be fine to eat fresh as long as it is cleaned thoroughly before eating. Then comes the topic of water, can you drink water out of the tap. Most everyone agrees if you have city water it is safe to drink, but many people disagree when it comes to well water, is it safe to drink and bathe in? I asked about this because so many people insist you must boil well water and take precautions when bathing to avoid ingesting any water, Dr. F said that as long as your well tests clean then you can drink the water and bathing isn’t an issue. I have well water, my well tests clean, I am opting to drink the water straight from the tap and at least one of the other people in my group in Moscow also had a well and was planning to do the same. Again personal preference.
Now about pets, this is a hotly debated issues on the groups. Dr. F says as long as your pets are healthy and up to date on everything and free of parasites it is safe to be around them when you get home. He says it is safe to hold them, pet them, allow them to sleep on your bed with you, etc. Basically just don’t let them lick your face, get near your face, and don’t clean litterboxes or pick up their droppings and if you must wear a mask and gloves, wash hands afterwards, and use sanitizer. You also need to be more careful if you have pets that go outside, just because they can track things into the house and are more likely to pick up parasites. Just make sure that after handling your pets that you wash your hands or use sanitizer. For me personally I have 3 indoor cats, they are 100% indoor cats and are parasite free. I hold them, pet them, they sleep on my bed, I’m not really concerned about catching anything from them. I just avoid them coming up to my face and I do wash my hands or use sanitizer after touching them. Basically follow the rules they recommend for pregnant women and you’ll be fine. Now I had inquired on certain groups prior to my treatment about reptiles as I have a pet aquatic turtle, I was told by so-called experts that you cannot have reptiles in your house at all for at least 6 months if not a year because they are too dangerous because of salmonella. I inquired about this as well and was told that as long as you don’t handle the reptiles, you don’t really have to worry about catching anything, no need to rehome them for a set period of time, just have someone else take care of them for the first 6-12 months. Basically back to following the same rules as pregnant women.
Now onto the topic of babies and kids. Dr. F says being around your own children is fine when you get home, just no letting them get in your face or touching your face for at least the first month. No need to wear a mask around them. But there is no need to send them away, only exception is if they are sick, then you may want to avoid them for that time frame until they are healthy. Now what about babies that need diapers changed. Dr. F recommended that for diaper changes that you wear a mask and perhaps gloves, or at least wash hands and use sanitizer afterwards and throw diapers away in a container outside your house, not indoors. Now I have a child in diapers so when I have to change her I do wear a mask and gloves, then throw the diaper in a bin outside the house, then wash my hands good, and then use sanitizer. Not super difficult.
How long to wear a mask in public. Another issue that is hotly contested. Dr. F says wear a mask in public for at least the first month and then depending on your blood counts you can either opt to stop wearing a mask at that time or you may want to continue for a while longer. He says that to integrate yourself slowly into public, so if you are planning to go somewhere crowded like concerts, church, school, etc. you may want to wear a mask for longer just because you are more likely to catch something in a confined space like that. I have only gone in public 4 times since I’ve been home, really no need to venture out more than that. First time was to a local store to look at veggie plants where nobody else was. I went to the local Urgent Care at the hospital twice, once for blood work and once to test for DVTs. Then I went to Walmart to pick up a prescription and solely just went to the pharmacy and then left the store. At all times I wore a mask and tried to avoid people as much as possible.
Then other random topics. Dr. F does recommend avoiding gardening and being around dirt being kicked up for the first several months maybe longer depending on your blood counts. Make sure that your house is clean when you get home, but no need to go crazy. Make sure everything is well dusted, especially in the room you plan to sleep in and clean the carpets and wash the drapes. As for cleaning when you get home, of course keep things clean, make sure the kitchen and bathroom are kept clean and disinfected, especially counters and cooking areas. I have containers of household disinfectant wipes and I use one to wipe down the counters and cooking areas before I prep food and before serving up the food. I also use one to wipe down the bathroom surfaces twice a day. I personally don’t go super crazy on the cleaning, just a bit more than normal. And then of course I wash my hands more frequently and use hand sanitizer quite a bit throughout the day. And most importantly I make sure not to touch my face with my hands, especially my mouth. We also do not wear shoes in the actual house, all shoes are removed in the mudroom area.
Another thing to remember is that after you get home, anytime you spike a fever over 101F to immediately go to your doctor or the ER and let them know that you just had HSCT and explain that to them. You could have an infection and need to be started on IV antibiotics or oral antibiotics immediately. Infections are nothing to mess around with as they can cause sepsis, which is very bad. Also if you have any pain in your neck area around where your neck line was, or chest if you have a chest line, or any random pain or swelling in your limbs, be sure to get checked out for blood clots. While rare, clots in your jugular after having your line removed can happen, and blood clots in legs especially are more common especially after airline flights and not moving around much. This is especially important for those that are less mobile. Most clots if found early can be treated with basic blood thinning medications. So if something seems wrong, be sure to get it checked out.
I know recommendations vary from doctor to doctor and everyone chooses to do what they feel is best. So basically make decisions on what you feel is the best for you.