Friday, July 31, 2009

So there are several things to update you on. They are letting me take "baby bottles" of Magnesium home. They literally look like baby bottles with an IV tube coming out of it that we hook up to my Hickman and let it run for 4 hours. The more exciting news is that they are going to give me Sunday off. They also said that hopefully soon I will only have to come to the clinic on Monday, Wednesday, Friday, and maybe a weekend day.

Health wise I'm still doing well. My blood counts have been dropping some so they took me off of one of the medicines that can cause this. If this is the cause, they will put me back on the medicine - they just want to know what's causing drop in blood counts but not necessarily stop it.

Thanks to everyone,

Tuesday, July 28, 2009

Day +52

If insurance approves... the clinic is going to let Amy have "baby bottles" of magnesium to take home. She can hook them up and run the magnesium at the apartment instead of the clinic. YEAH! They say it takes 4 hours for one of the bottles to run, so she can do it while she sleeps or watching tv - whenever it suits her. This will be nice for several reasons: Amy will not have to come to the clinic everyday and when she does have to come to the clinic it will be a much quicker appointment.

Someone once said "laughter is the best medicine"... so the other night we watched "Mamma Mia" - and Pierce Brosnan singing ABBA songs was really good medicine. Along that same line.. Sherry we would love to see pictures of you and Brenda parasailing! :)

Love and hugs to all,

Monday, July 27, 2009

Day +51

Amy is past the half way point of her first important 100 days. We still come to the Adult Bone Marrow Outpatient Clinic each day for Amy to get magnesium ( and potassium some days). We arrive at the clinic and they weight Amy, take her vitals, then we wait (which could be 5 minutes or an hour, we never know) for the nurses to come draw her blood for her labs. After they draw blood we wait about an hour for her lab results to come back. Then they hook a bag of fluids/magnesium ( and whatever else she needs) to her Hickman lines. Amy usually gets 4 grams of magnesium each day, which takes about 3 hours to run. Amy loves her Hickman line - she was not too sure about the Hickman the first time she had it put in, but it's great now. Amy's nausea has eased up and she has not been sick for several days ( I hope I have not "jinxed" it). She is having a low grade fever (99.0-99.6) off and on. The doctors don't do much until fever reaches 100.5 - then it is usually back to the hospital. We are extremely thankful that other than feeling tired all the time, Amy has been feeling better.

Hope everyone has a good week. Its hard to believe July is almost over.

Thursday, July 23, 2009

Day +47

Everything is about the same. Still needing magnesium and potassium each day. Amy had some episodes of being light headed and dizzy over the last few days, but she did not have any last night. Talking to a few of the other patients in the clinic, they are having same problems Amy is having: very tired, bouts of nausea/vomiting, some light headed moments, needing magnesium daily and (one I find interesting) her feet and hands are very sensitive. Nurses say all of these are common. Still eating pretty bland, but throat and mouth do seem to be getting better.

Thank you for the cards you are sending, they are a highlight of each day.


Tuesday, July 21, 2009

Good morning .

We are at the Outpatient Clinic and Amy is receiving her daily magnesium. The nurses have finally slowed it down enough that Amy is having less side effects from it. They are checking to see if insurance will cover "take home" magnesium IV, but we don't think insurance will cover it unless given in clinic. Amy has one more day of antibiotic for her urinary tract infection and we hope after the antibiotic is finished her nausea will ease up some.

We have a good daily routine going, but looking forward to the day that Amy gets to skip a clinic visit. The clinic staff is very nice and they do have entertainment (guitar, dulcimer, keyboard) on certain days, but a day off would be nice.

Hope everyone is having a good week.

Saturday, July 18, 2009

Two posts in one day - this means we have something important to tell you. We got the percentages back from the bone marrow biopsy. There is a 2% margin of error in this test so the lowest it can be is 2% and the highest it can be is 98%. They break down the marrow into two categories and measure the percentage donor in each category. I don't completely understand the categories but in one category I was 92% donor and in the other I was the full 98% donor. So these are absolutely excellent numbers and I feel comfortable now saying that the transplant was successful.

Hope this good news finds you well,
Day +42

We are at the clinic. Blood has been drawn for labs and we are waiting on results to see how much magnesium Amy will need today. Yesterday she needed magnesium and potassium.
They switched her antibiotic from IV to oral, so she no longer has to get that here.

Amy still has some "bouts" of nausea and vomiting. The "bouts" usually hit her in the mornings and then sometimes again in the afternoon or evenings. Most of the time they come and go without lasting too long. The biggest thing now is she feels tired all the time, but she still has been great about getting on the treadmill most afternoon.

As of today, Amy has lost about 20 lbs., but she is eating good and her weight will probably start leveling off . She is able to eat a wide variety of foods but they must be fairly bland - the least bit of spice still hurts her mouth. She use to love sweets, but now they don't appeal to her near as much.

We are still grateful for the support and love that so many people have shown to us. Amy has received cards from people we did not known, but who wanted to let her know they were thinking of, and praying for, her. To all of you - thank you. Kathy

Wednesday, July 15, 2009

Again, there's not much to report from here. I've had to get magnesium several times (I'm actually getting some right now) and that is never fun. The good news is they are giving me the day off tomorrow - they feel my levels will be high enough after this dose of magnesium that I will not need anything tomorrow. All the preliminary results from my bone marrow biopsy have been good but we're still waiting on the percent donor/me.

RETRACTION :) - before we left the clinic today some results from a couple of days ago came back and a bacteria had shown up in my urine. So this means I have to get an antibiotic by IV for 30 minutes for at least the next three days. So unfortunately I do not get to take tomorrow off... but hopefully a day off is in the near future.

Thanks, Amy

Sunday, July 12, 2009

Hello everyone! There's not much to report from here. Yesterday's clinic visit was long because I needed magnesium but luckily I slept through a lot of it so it wasn't so bad. Today I did not need any electrolytes so we were out of there by lunch time! They did put me on a new med for high blood pressure. The high blood pressure is a side effect of one of the other medications I'm taking. I've kind of figured out that the gist of post-transplant treatment is that you need immunosuppresents, anti-viral, and anti-fungal medication. Then tons of other medicines are added to offset the side effects of the medicines that you need. I feel like the doctors are doing a big balancing act with my body - but they do this all the time and I trust them completely.

Hope you all have a wonderful week,

Friday, July 10, 2009

Yesterday's clinic visit was very long. My blood work showed that I needed both magnesium and potassium. The magnesium makes me very hot and just feel "yucky" so they have to run it very slow so we were there until around 4:00. They also put me on a very restrictive diet (sweet potatoes, cream of wheat, some bland cereals with lactose free milk, etc.) because they thought I may have graft versus host disease in my digestive system.

Today's visit was much better. I did not need any magnesium - this is the first day in weeks that this has been the case. The current rounding Dr. at the clinic (Dr. Sullivan) reviewed my chart in more detail and thinks that I do not have GvHD in my digestive system so he took me off the restrictive diet and put me on a high sodium diet since my sodium level is still low (which you can imagine is quite the opposite). So I am much happier with the foods I am being able to eat now.

They also did a bone marrow biopsy today and the results of this will tell us a lot about the success of the transplant. It will take a week or more to get the results but they will be able to tell how much of my bone marrow is donor cells and how much is my own leftover bone marrow. The goal is to be at least 80% donor cells so our fingers are crossed.


Wednesday, July 8, 2009

Guess What! I'm OUT of the hospital!!!! Hopefully this time it will be for good. I told Michael today that this feels like the first time I've been "home" because I felt so lousy the last two times they released me.

My sodium level came up a little this morning so the doctors were comfortable letting me go - although it still needs to come up more. The only two things I have to complain about (which Michael and mom have heard a lot of) are my mouth sores and fatigue. The mouth sores are better but still hurt, especially when I eat. For now, I will go to the clinic everyday for blood work and to get anything I need through IV.

As always, we can't thank you guys enough for all the support,

Tuesday, July 7, 2009

One more day....
Amy's sodium level was low so the doctors are keeping her in hospital "one more day" .
She is feeling tired and a little achy, but the nausea and vomiting have not come back.
Her mouth still hurts , especially with certain foods or drinks. Foods do not taste like they are supposed to, most have a real "salty" taste.

Also, they have added a new medication (demeclocycline) and limited her fluids, to help with sodium level. The doctors wanted to make sure she did not have nausea/vomiting as a side effect before releasing her. So far no side effect has shown up. Amy does have a lot of medication to take each day. At last count , she will be taking approximately 20 pills a day. The worst side effect Amy has right now is when they have to give her magnesium. No matter how slow they run it, she gets extremely hot and flushed. Thankfully, she does not seem to have any other major side effects from anything else.

We are still astonished at the amount of support we have received. Amy reads and appreciates every card, email, or blog entry. We are comforted with all the prayers , support and love given.
You have all been a blessing to us. Thank you. Kathy

Sunday, July 5, 2009

Day +29

Amy's nausea and vomiting are better...YEAH!!! Saturday and today she has eaten more and kept everything down. If she continues to do well, she will probably go home Monday or Tuesday.

The Outpatient Clinic gave us a long list of things Amy can 0r cannot do for the next 3-12 months (or things she can never do )... here is a sampling:
1). No yard/gardening work, especially around mulch (12 months).
2). Cannot clean up after a cat or dog, or own a new pet (12 months).
3). Cannot drive (until physician gives okay).
4). Cannot work ( 6 months or longer- until physician gives okay)
5). Must use sun screen every day (life long)
6). No sunbathing or tanning beds, must wear protective clothing and hat when in sun (life long)
7). No eating at buffets, salad bars or public dinners where food is set out for everyone. (life long)
8). Change toothbrush weekly, avoid dental floss. (life long)
9) Cannot be in a house/building that has active wood burning stove or fireplace (6 months)
10). Never own a pigeon. (life long) -and she really wanted one :)
Thought some people might find this interesting.

Hope everyone had a good 4th of July.
Please continue to pray that everything goes well and Amy continues to feel better.
love to all, Kathy

Friday, July 3, 2009

Hi everyone! I hope you guys had a good Friday. After my appointment at the clinic they decided to put me back in the hospital (We find it kind of funny that the clinic wants me in the hospital yet the hospital seems to want to send me out to the clinic.) My nausea/vomiting are still not any better, and thus it's hard to keep anything down. This makes me dehydrated and causes my electrolyte levels to be off. So the goal is to watch me closer in the hospital and hopefully find out where the nausea is coming from. There are several possibilities. One is that the mucositis sores in my stomach have caused irritation. Another small possible is that this is the onset of Graft vs. Host Disease. Anyway, I just want them to figure out what's causing the nausea and make it stop!

Hope you all have a good 4th of July,
Amy is back at the apartment. Dr. Chao released her from hospital late yesterday afternoon. she is still having nausea/vomiting, but they feel it will clear up as the irritation in esophagus and stomach heal. Amy will have appointments at the Adult Bone Marrow Outpatient Clinic everyday (7 days a week including holidays) for the next month or two. Depending on how her blood work is for the day, the visits could be anywhere from a couple of hours or take the whole day.

We continue to be thankful for all your support and love. Kathy

Wednesday, July 1, 2009

This morning they scoped Amy's digestive tract. The only thing they found was irritation in her esophagus and stomach. They will put Amy on medication (pepsin) for a while and see if that helps. The nausea and vomiting are much better. She has been able to eat and drink some ( and keep it down). Hopefully , in another day or so, Amy can try going home again.