I met with my hip surgeon.  He said things are healing well but, to my disappointment, it requires further healing.  That means at least six more weeks without being able to put any weight on the leg - six more weeks using a walker or wheelchair.  He made it sound like there was never a chance that I could have began walking on it already.  Since I have no recollection of his pre- or post-surgery consults I have no idea how long a break like this takes to heal.  Apparently it's at least twelve weeks.  That sucks, because I went to this appointment with the realistic expectation that he would tell me that I could begin walking...  Swing and a miss.

On the positive side, he said it appears to be healing very well.  I asked him, after everything is said and done, what kind of permanent limitations I would face.  He said if it continues to heal over the next six weeks as well as it appears to have healed the first six weeks I will make a complete recovery.  No cane.  No lifting restrictions.  Nothing.

So I guess that means the name of the game is patience.  I have no intention of disobeying his orders.  I'm not an idiot - six more weeks now is worth the possibility of permanent (leg) normalcy.  But I was so ready to begin walking or driving again.  It's just gonna be exceptionally tough, especially as spring begins.

You can view the xrays of my leg, from accident day and my 6-week checkup, here.

I just finished with the bone marrow biopsy and labs associated with my one year anniversary. It's already been one year since my transplant. We won't get any saumya until I meet with dr. O next Tuesday, but I don't ezpect any surprises. Ive been feeling well and, with the exception of my hip, things seem to be looking up.

Last week I met with Dr. Young, my infectious disease specialist. She echoed what Dr. O had told me about the clearly of the CT images. She thought I could either stay on the caps or switch to an oral antifungal. She agrees caspo seems to be doing the best job but is open to trying my other options. I chose to stay on the caspo - I really don't wanna end up with pneumonia again. She didn't seem as convinced as Dr. O that I'd need to be on it for such a long time. Definitely for now but hopefully not much longer.

I'm meeting with my hip surgeon this afternoon. Hopefully he will have good news.

Yesterday I had an appointment with Dr. Oran. She did not believe me when I told her that, except for my eyes being dry and bothersome and the sores in my mouth, I have been feeling pretty well. She asked IRael If he thought I was doing as well as I said I was, since I'm "not a complainer."

I learned that the last CT scan I had in January was completely clear. There were no signs of infection, both bacterial and fungal. I am meeting with Dr. Young 02 March to get her opinion on whether or not I can get off my IV caspofungin (and get my PICC line removed). I asked Dr. O how sue felt about stopping caspo and removing my line. Because of my history I need to remain on an antifungal indefinitely. I used to be on VFEND, an oral antifungal, but while I was on it I contracted several microorganisms, so it appears to have a limited effectiveness for me. So it seems unlikely that I would be put back on VFEND when caspo is responsible for successfully clearing my infections. Which means I wouldn't be getting rid of my line anytime soon.

That's Dr. O's take on the situation, but she will defer any decisions to Dr. Young, the infectious disease expert. I'm not really expecting her to say anything different. But we'll see. Dr. O said there is another class of oral antifungals, different from VFEND, that I haven't tried yet, so that might be an option.

I've been getting around alright, although I've been having more pain than before. When I go from a seated position to standing I have an incredible pain in my hip. I dint know if it's part of the healing process, or if something is wrong, or if maybe I'm becoming tolerant to my pain medications. I'll see if it improves in the next few days, otherwise I need to contact my physical therapist and ask what she thinks about it.

Since I'm doing well enough I won't be seeing Dr. O for two weeks. That same week I will be seeing my surgeon and having X-rays of my hip taken. I also have my one-year anniversary labs and bone marrow biopsy. Man am I not looking forward to that.

Home-sick

I saw my surgeon's nurse yesterday. He took a look at my incisions and thought they were healing nicely. I was cleared to not see my surgeon for four weeks. At that time I'll have X-rays taken and will meet with my actual surgeon to hear how he feels things are going.

I feel useless. Since I can't put any weight on my right leg and thus need to use a walker to go anywhere. That makes it virtually impossible to carry anything. So that means I rely on assistance for everything. I can't really cook, I can't do much cleaning, I can't do laundry, I can't take care of Baxter. In addition I haven't left my apartment except for clinic appointments. It is exhausting moving from my front door to the exterior of my building into a car, I couldn't imagine going someplace without using a wheelchair, like at my clinic appointments. So I don't go out; people need to come to me to visit.

I spend my days laying on the couch, watching the same shows from day to day on tv, and sleeping. I feel so useless, lonely, and trapped. I wish I could walk and get out of here. So I could resume my normal life.

It's gonna be a long four weeks.

Back in the Saddle... Figuratively, Of Course

So I've decided that I need to resume writing this blog. I know I've said that before but this time I really mean it.

As I sit here in clinic I've decided that I'm going to tell people I have a broken leg. Broken hips are for senior citizens. Since I'm not in my 60s yet it seems more appropriate I call it a broken leg. It's the truth, technically, since hips are on femurs. Plus the entirety of the implanted metal is in my femur.

Broken leg, not broken hip. That's my story and I'm sticking to it.

Stupidest Day Ever

So my edema has been worse the past couple days.  As a result, I've increased the amount of Lasix I'm taking, which in turn has made the BMT doctors concerned about my kidneys.  So they wanted me to come in today for a checkup.  While there they performed a blood test that indicated my heart is under stress, similar to those in heart failure.  My doctors wanted EKG and ECHO tests performed along with supplemental IV drugs to take off the excess water.  They convinced me the best way to do this was for me to be admitted to the hospital.  So I was.

Worst decision ever.  Sure, I had my EKG and ECHO, but I spent the rest of the day sitting around not hooked to any IVs or receiving any treatment for my edema because today it is much better.  I took all my medications as I would have at home (after lengthy explanations of my medication regimes.... they still don't have it right), but instead of being free I got to sit in a hospital room.  It is so stupid.

On top of it all I'm on a low-sodium diet so I couldn't order anything I wanted off the hospital menu.  Literally everything I tried to order had too much salt in it, I had to modify it somehow (read:  had to make an already crappy meal even crappier).

We'll see what the EKG and ECHO results are, but the doctors had better have a treatment plan for tomorrow.  Because after a day like today it needs to be damn convincing if they expect me to stay inpatient.

Complete with Velcro

Today I went and was fit for a pair of diabetic shoes.  Hopefully I'll be able to better fit into these shoes than my current ones.

My edema has gotten worse over the past week, since the time I started taking the narcotics.  I've upped my Lasix and have been wearing my compression stockings, but they're not much relief.  The sooner the pain from the shingles goes away the sooner I can get off the narcotics and, hopefully, stop the massive swelling again.

My shingles sores have dried up and become crusty, now they just need to peel off.  The rash is like one big scab.  It's itchy as hell and still hurts but the narcotics keep me comfortable, even if I feel like every time I sit down I could fall asleep for hours.

Dr. Oran had her baby, a girl.  Everyone is doing well as far as I heard, even though she was four weeks premature.  Because she was so early her transition plan hadn't yet been determined, so now that she's out (probably until the new year) my nurse coordinator Carol is still trying to figure out which doctor will be taking over my case.  It should be decided sometime this week.

The shingles is stable, my GVH seems to be stable, so I don't have an oncology appointment until next week.

Moldy... Old.... I'm gonna get something to eat!

Tuesday I was supposed to meet with Dr. Oran.  However, since she is pregnant, she didn't want to see me because of the shingles.  Shingles is contagious but the only at-risk populations are people who haven't had chicken pox, immunocompromised people, and pregnant women.  So I met with another doctor who examined me and discussed everything with me, then went and discussed her findings with Dr. Oran, then came back with what Dr. Oran had to say - sort of like the game "telephone".

The three of us decided that it is still too early to tell if my shingles treatment is effective.  More time is needed to see if new lesions are developing.  Until then, I'll continue taking my antivirals and pain meds.  We also decided that my GVHD has stabilized since discontinuing the prednisone pulses, which means we're going to try slowly reducing the prednisone I'm taking daily from 30mg to 20mg.  My creatinine has slowly been climbing as well (it's been hovering around 1.5-1.6), so I'm also reducing the amount of Lasix I'm taking.  That should help reduce the stress on my kidneys, as long as the edema stays under control (it's been a lot better recently).

All my tests from my six month anniversary came back normal/clear.  There is no signs of leukemia anywhere and the marrow is 100% donor.  Furthermore, all three cell precursors are present and producing cells (white blood cells, red blood cells, and platelets).  The other genetic tests that were done all came back with favorable results.  Finally, my lung x-ray was clear (no pneumonia visible).

My next appointment is tomorrow to check on the shingles.  If there is no improvement or I'm still producing new skin lesions I will need to take different antivirals.  I'm told, however, that these would need to be done IV which means I'd have to be hospitalized.  Hopefully it won't come tot that.

Photos

The pictures are kinda washed-out.  The rash looks much more bright red in reality and there are large white blisters near my midline on both my front and back (they're hard to see in the photos).  I'm told eventually the entire rash will blister, pop, crust over, and peel off.

Since the antivirals I'm on are hard on the kidneys (go figure), I went back to the BMT clinic yesterday for lab work and to re-evaluate my shingles.  My creatinine came back at 1.53, which isn't great but acceptable.  The doctor started me back on Gabapentin (Neurontin), which should help with the generalized abdominal pain I have.  She also switched me to a Fentanyl patch.  It'll provide constant pain medication instead of having to take pills every 3 hours.  I was started on a low dose and so far all it seems to do is make me drowsy.  I'm still taking Dilaudid every 4-5 hours to manage the pain.  Between the two it covers it well, but being on strong narcotics isn't ideal, the combination of the two basically leaves me stoned.  It's better than being in pain, but I'm hoping Tuesday, when I meet with Dr. Oran, we can work something better out so I don't spend my days in such a dug-induced fog.

Meet the Family

Say hello to Baxter.  IRael and I adopted him from the Humane Society on Saturday.  He's an 11-month-old black lab mix with a tail that is curly like a spring.  He is such a sweetheart and will climb over anything to come cuddle by your side.  It's been fun learning what he likes and figuring out his personality.  He came to the Society as a stray, so he's like a blank slate - they had no background information on him, but it's apparent he's been neglected (you can see in the picture some scratches/worn fur on his nose, we think from an over-tight muzzle).  He doesn't quite know how to react to some of his new treats and toys, although he's quickly learning they're his to be enjoyed.

He is incredibly well-behaved, loves everyone he has met, and plays well with other dogs at the park.  IRael and I are lucky to have found such a sweet dog and are glad he seems to be adjusting well to his new home.  I love having an animal around again, his companionship over just the past few days has been a boost for my sometimes lonely spirits.  We're looking forward to many great years with such a handsome, loving canine.

Call Me "House" Kempfert....

...because I'm covered in shingles.  D'oh.

So Monday I woke up with a small patch of irritated skin on my right side of my belly.  I didn't think much of it.  Yesterday I woke up feeling ill and the patch had grown and become very painful, but I still didn't think much of it.  Today I woke up, the patch had grown more and was still extremely painful, even without touching.  After much nagging (thanks IRael...) I called my nurse and she recommended I come get it checked out.  Turns out I have shingles.

Shingles is caused by the Varicella-zoster virus, the same that causes chickenpox.  I had chickenpox as a kid, and after the body fights off the virus the first time it doesn't completely disappear.  Instead it lies dormant in nerve endings, waiting for an opportune time to re-emerge.  If it does it isn't called chickenpox, it's called shingles.  So it is quite common for it to appear in patients who are immune compromised.  It causes painful skin lesions, flu-like symptoms, and, in extreme cases, organ damage, blindness or deafness (if it affects the nerves in the eyes or ears).

I've never had my skin hurt like these shingles lesions hurt.  It feels like stabbing knives all along the affected area, and that's when there is no contact.  Wearing a shirt is almost unbearable, such little pressure increases the pain dramatically.  The doctor I saw today started me on an anti-viral to combat the infection and gave me a strong painkiller to help relieve my suffering.  I've had an upset stomach all day too.  Unfortunately she said it will probably get more uncomfortable before it gets better, which can take two or three weeks.  There isn't much else that can be done. They can give me different painkillers if the dilaudid doesn't work.

My appointment with Dr. Oran yesterday was rescheduled for next Tuesday.  So I haven't heard any of my test results yet.

Lazy Summer

So it's been a while.  A lot has happened since my last post and yet not much has changed.  My Day 100 work-up in June went well - all my tests came back with favorable results.    Around that time my GVH flared again and has been trouble ever since.  Since I am post-Day 100, the GVH is now classified as chronic instead of acute, which doesn't mean much except for how it is treated.  At the end of June I began eight weekly infusions of 1200mg of Prednisone (steroids) in an effort to suppress my immune system (in addition to the 30mg I take daily).  Being on that much Prednisone is awful.  I would get my infusions on Tuesdays and for the next three days I could hardly sleep.  I would be restless, irritable, and have dramatic mood swings.  It has made my skin so fragile any bump or scratch produces a sore or blister that takes weeks to heal.  It causes me to retain water and made me chubby.  I've gained about 40 pounds since I started the eight infusions, I can't wear shoes because my feet don't fit inside, and my face is so round people don't recognize me.

The worst part of it is that it didn't work.  Last Tuesday was my last infusion and by that time all my symptoms should have resolved.  Yet today I still have GVH sores in my mouth, my hands and neck are red, and my eyes are constantly dry (a new symptom with chronic GVH).  Dr. Oran is concerned because of my lack of a response to treatment - such an intense steroid treatment typically does the trick but for me it hasn't.  We're going to wait at least a week to see how my body responds without the weekly pulses, but it looks probable that I'll require alternative immunosuppression to control my GVH.

It's disappointing.  The Prednisone was so hard on my body and the little relief I received was offset by the complications it brought.  I'm frustrated by how slowly I'm making progress.  Before having the transplant I had completely unrealistic ideas of where I would be at Day 100 or 6 months.  Even though my expectations of myself and my progress have been adjusted, it was a tough adjustment to make.  Day 100 was hard because I didn't feel as good as I hoped (expected) I would.  I was still fighting serious complications, which were common and normal and to be expected at Day 100, but I felt I should have been past that.  That my progress should be faster and I would breeze through recovery and return to my normal life in record time.  But that's not how it works, and that was a hard realization to come to.  And that's when I stopped writing my blog.

Now I've set more realistic goals.  People ask me how I feel, I don't say good.  I say alright, because honestly I have a lot of times when I feel like shit.  I have good times and can do a lot of what I like to do, but life is hard.  Recovery is hard.  It takes time.  And I've learned that I need patience.

Friday I have my six month biopsy and labs, then I'll meet with Dr. Oran again next Tuesday for the results.  I don't expect any surprises, but you never know until you know.  I'm not looking forward to the biopsy... ugh.

Day 94

Hemoglobin 11.3
Platelets 101
WBC 5.3
|Neutrophils| 2.7
Creatinine 1.49

This week marked the one year anniversary of my diagnosis.  I found myself thinking not about how sick I was or debating my new quality of life, but rather how strong I feel now and how good my life is.  Other than this foot pain I feel healthy and my life and how I live reflects that.  I do have limitations and will for a while, but not forever.  And if this is where I'm at one year after my leukemia diagnosis with all the complications I experienced, nine months after a pneumonectomy, and three months after a bone marrow transplant, I have no doubt that in six months, or a year, or two, or five I will be stronger and healthier than I can imagine, and this disease and all that came with it will be nothing that could ever hold me back.

I met with a midlevel on Wednesday.  My counts are up (finally), which made me pleased.  She didn't have much to say.  The neuropathy is still unchanged, but the Vicodin and Gabapentin gel help with the pain and make the day bearable.

We decided that I should be evaluated by a neurologist to make sure nothing is being overlooked.  There is one neurologist at the U who specializes in neuropathy that is currently accepting new patients.  He sees patients at two clinics.  At his primary clinic his first available appointment is in February of 2011....no good.  The other clinic is at the U's pain management clinic and I can be seen around the end of July....not much better.  My doctor spoke with his nurse and, after explaining my situation, I was put at the top of the waiting list.  So if there is a cancellation I'll be the first to be offered the cancelled appointment.  So hopefully I'll be able to get in sooner.

So all this week I have not been sleeping well.  I've tossed and turned all night and it seemed like I was getting up every hour to go to the bathroom.  Well yesterday I'm looking at the pills in my pill box and realized I put my diuretic in the wrong boxes.  So instead of taking it in the morning and afternoon like I was supposed to I'd been taking it in the afternoon and right before bed.  That explains why I was up to pee so much during the night...  So I put them where they needed to be and slept great last night.  I thought it was kinda funny.

Monday I have a chest xray and my Day 100 bone marrow biopsy.  Ugh, I'm dreading it already.

Day 90

Hemoglobin 11.0
Platelets 73
WBC 3.9
|Neutrophils| 2.1
Creatinine 1.39

Friday I saw a midlevel.  She didn't have much new to say.  The neuropathy isn't any better, so we decided I should seek the opinion of a neurologist.  The hope is that he will have more insight into the cause of this pain and how to treat it.  All the BMT doctors tell me is that it is "common after chemotherapy," but I would like a more firm diagnosis.

My blood pressure has been up, so my Cozaar dosage was increased.  No other medication changes at this time, except for the prednisone taper.  As of Wednesday I'll be down to 40mg/day.  My next appointment is Wednesday.

Yesterday I drove to Rochester to see my brother.  I had the sunroof open the entire drive down...turned out to be a bad idea.  The sun was shining in onto the top of my head and my skin has freaked out.  It looks and even blistered (the big dark spot) like a terrible sunburn, but it doesn't hurt.  A bunch of my pill bottles say "You should avoid prolonged or excessive exposure to direct and/or artificial sunlight while taking this medication," plus GVH patients, I've read and been told, are very sensitive to sunlight.  Exposure to it can cause the disease to flare.  I guess I should have been more careful.

So I got a ball cap now that I'll wear when I'm out and it is sunny.  I need to find a big straw hat...

Yeah, that'd do.

Day 86

Two weeks until Day 100...  A significant milestone I guess, but primarily I'm excited because I think they'll remove my central line.  I want to be able to shower like a normal person (you don't want to know how long it's been since I've washed my hair, albeit there isn't much to wash).

Last night and tonight I've had terrible insomnia, even after taking my Ambien and Ativan.  I was up until 0600 or 0700 this morning, and now it's 0154 and I'm still wide awake.

I saw a PA today in clinic.  My counts are up a little, something like:

Hemoglobin 11.1
Platelets 77
WBC 3.7
|Neutrophils| 1.8
Creatinine 1.38

My mass is down to 83kg (~180#).  It's definitely noticeable in my legs, they don't look very sausage-y anymore except around my ankles and feet, exactly where the neuropathy pain is.  I haven't been wearing my compression stockings much and even at night I don't seem to be retaining much water in the upper parts of my legs or body.  I'm still on the diuretic, so I just need to keep hydrated as the last of the extra fluid comes off.

My neuropathy pain is still constant and severe.  I've found that one of the painkillers I have left over from my lung surgery (I pop two 500mg acetaminophen/5mg Vicodin hybrids) will take the edge off the pain and make walking easier for about 4-5 hours.  I talked it over with the PA today and she was fine with me taking it.  She also doubled my dose of Gabapentin and prescribed a Gabapentin gel to rub into my feet.  I hope it brings some more thorough relief.  Even with the partially effective painkiller my feet are still miserable.  It wears off so fast and doesn't help me at times like when I sleep.  If I have to get up during the night to use the bathroom, for example, walking is so impossibly painful I crawl to to the toilet and back on my hands and knees.  Trying to walk brings such excruciating pain my legs will give out and I usually fall to the floor, which is how I got the brilliant idea to crawl in the first place.  Strokes of genius come in such strange packages sometimes...

On the plus side (I guess) I took a pair of crutches from my parents' house while I was home this weekend, so if I have to go mobile for an extended period of time it is a little easier.  I should say faster, not easier.  I can shuffle much more quickly on the crutches than if I just walk freestyle.  I also received a handicapped parking tag for my car (woo close parking!).  I refuse to let this pain keep me from living my normal routine (ie grocery shopping).  I'm glad I have at least a few options - painkillers, crutches, disabled parking - that make it possible, even if still painful, to do what I need to do to stay independent.

Plus now, with a disabled tag, I can park at meters and don't have to put in quarters!

My next appointment is Friday.  The PA was concerned that my creatinine was up a little (I think it's the diuretic's fault, since there's such little excess fluid left.  That's why I need to watch my hydration and keep my kidneys happy).  My blood pressure has also been elevated since I stopped the amlodipine.  If it is still up on Friday they plan to add another anti-hypertensive.  I thought she should have done it today, but the PA insisted we wait.  So I guess we will wait.

Day 80

Hemoglobin 10.3
Platelets 61
WBC 3.0
|Neutrophils| 1.8
Creatinine 1.28

Not much to report from the doctor today. My counts have stayed approximately the same from Tuesday.  I lost 3kg (about 6.5#), so the increased diuretic seems to be doing something.  The neuropathy hasn't changed, but I wasn't expecting it to.  I just have to tough it out until the Gabapentin begins to take effect.

I don't think there will be any changes to my immunosuppression until Dr. Oran returns - that is unless my GVHD begins to flare.  The doctor I saw today had no intention of doing something so bold without a damn good reason which I guess is ok with me.  I just miss Dr. Oran already.

Since I don't have much else to say I thought it'd be fun to give you an idea of what my daily medication regiment looks like.

That's everything I take, sitting on the corner of my desk.  Most are drugs, the larger bottles in back are vitamins, and the big tubs on the right are creams.

That's my weekly pill box.  You can see how big it is with my hand in there.  Those little boxes fill up fast, though.

These are the scheduled medications I take, the dose, the frequency, and the function.:

• Furosemide 60mg 2x daily - my diuretic
• Cozaar 50mg 1x daily - anti-hypertension
• Metoprolol Succinate ER 50mg 1x daily - anti-hypertension
• Ursodiol 300mg 3x daily - protects my liver
• Gabapentin 300mg 3x daily - anti-neuropathy agent
• Acyclovir 800mg 4x daily - anti-viral
• VFEND 300mg 2x daily - anti-fungal
• Prednisone 80mg 1x daily - immune suppression
• Rapamune 0.4mg liquid suspension 1x daily - immune suppression
• Azithromycin 250mg 1x daily - anti-bacterial
• Dronabinol 2.5mg 3x daily - appetite stimulant
• Calcitrol 0.25mcg 1x weekly - vitamin made by the kidneys
• Triamcinolone Acetonide Cream 0.1% applied 3x daily - steroid, fights dermal GVH symptoms
• Hydrocortisone Cream 1% applied 3x daily - steroid, fights dermal GVH symptoms, used only on my face and hands
• Lorazepam 1mg 1x daily - sleep aid taken at bedtime
• Zolpidem Tartrate 5mg 1x daily - sleep aid taken at bedtime
• Men's Multivitamin 1x daily
• Calcium 600mg with 250 IU Vitamin D 3x daily
• Organic Flax Seed Oil 1g 3x daily

I also have some prescription pain killers but I don't take them very often, so they're not included.  That's thirteen different drug capsules/pills, three vitamins, two creams, and one liquid suspension.  For those of you keeping track at home, it's a total of 37 pieces (plus the liquid suspension) going down the hatch every 24 hours (38 pieces on Sundays because of the Calcitrol).  It's a greater number than if you were to add up the list above because my prescribed amounts sometimes require multiple pills.  For example, my Prednisone comes in 10mg, 20mg, and 50mg sizes, so to reach a dose of 80mg I take one of each size, once a day.

And yes, I can recite the entire list from memory.

Day 79

I saw Dr. Oran yesterday.  She is concerned because my GVH has still not completely resolved.  She said once you start treating GVHD, symptoms should completely disappear.  Even after almost a month of treatment, however, I am still peeling and red on my hands, face, and feet.  Although the symptoms seem to be minor, the fact that they're still present indicates to Dr. O that further suppression may indeed be necessary.  She's hesitant to do so because the symptoms are so stable and don't cause me any discomfort.  She says we can't just let it persist indefinitely, but she decided to wait some more before taking the next step.  We're soon approaching the tipping point, however.

My biggest concern is the edema I still have in my legs.  The swelling has also caused neuropathy in my feet.  Basically it's sharp, shooting pain every time I put weight on either of my feet, and a dull ache while I'm sitting without weight on them.  The pain has been so bad the past few days I've had trouble walking.  Dr. Oran still thinks this is all caused by the GVH and complications from my medications.  She prescribed something to help with the neuropathy, unfortunately it takes about a week to build up in my system before I'll notice a difference (assuming it will make a difference).  Standard painkillers (acetaminophen, ibuprofen, narcotics, etc) don't relieve pain caused by neuropathy, so I have little relief, short of staying off my feet.

In addition to the neuropathy medication Dr. Oran increased my diuretic from 80 mg/day to a total of 120 mg/day.  My next appointment is tomorrow.  Dr. O is going to be gone for the next three weeks (d'oh), so I'll be seeing a different doctor during that time.  I just hope it's not a different doc each time.

Thank You!

Thank you to everyone who was at the benefit today and there with me in spirit.  I am incredibly fortunate to be loved by so many people and would not be as healthy as I am today if not for your support.

Thank you, from the bottom of my heart.

Love,

Nic

Day 71

Dr. Oran is pleased with the progress my GVH has made in the past week and doesn't believe further immune suppression is necessary now.  Although the skin on my hands, feet, and face is still dry and peeling, my color "has improved" and the rest of my body looks clear.

The report on my ECHO won't be completed and reviewed by Dr. Oran until later this week, so I'll get a call.  I weighed 90.0kg today, which is one kilo less than yesterday.  She said the prednisone and GVH could be causing to the edema.  Since the GVH is looking better I will start a ten-week taper of my prednisone tomorrow.  This in combination with stopping the Norvasc yesterday and my week-long diuretic run should rid me of all this extra water, pending the ECHO.  I went and bought thigh-high compression stockings today too...they were hard to put on.  But I think they're gonna make a big difference.

The University of Minnesota pharmacies have been out of stock on the pill form of Acyclovir for months.  Instead of taking a pill four times a day, I've had to take 20mL of it in liquid suspension.  They received stock of the pill form recently, so when I got my refill today I received pills!  I'm finally able to put it into my pill box instead of lugging around a jug of liquid form and an oral syringe.  That's a lot less to carry.  I'm excited about it.

My next appointment is a checkup on Friday.  IRael and I will be out for the benefit Saturday, I hope everyone is able to attend!