My Bone Marrow Transplant: Day 42 - 48

Day 42:

Clinic in the morning was met with great news.  My bone marrow is officially 100% donor!  I didn't realize it would be this soon before I was completely donor, but my NP informed me it was to be expected.  I complained about the day before, how I felt miserable and nauseated all day, and my NP thinks it probably has something to do with the oxycodone I take at night to help with the headaches from the cyclosporine.   I told her I would try not to take it all and see if it helped with the fuzzy headedness I usually feel the day after.  She also told me my cyclosporine levels were too high and reduced my dose - another possible contributing factor to the fuzziness I had been feeling.  Hopefully lowering the doses of both medications would make me feel better.  Spending half the day just trying to feel decent and normal has become quite old.  

Apparently, I had started to drink too much plain water and was told to incorporate a power drink of some sort to help improve my electrolytes.  What a complete turn about.  Before I couldn't drink enough water to stay hydrated, and then I was drinking too much and it was flushing my system of needed nutrients.

Day 43:
I was able to do some winter clothes shopping and attend a church service at night because I felt very well and strong that day.

Day 44:
I spent most of the day at home feeling very fatigued but blamed it on the shopping trip from the previous day.  It is amazing how I can go from feeling 'great' one day to being completely wiped out the next.  Each day holds its own surprises.  My stomach has settle much more than before and the esophagus pain has definitely diminished.

Day 45:
Started the day with a routine clinic visit but ended up spending all (until 5:00p) there.  My doctor wanted to give me an immunity booster called IVIG and it was infused for an hour.  The immunity booster was to be given about once a week and it's supposed to help push my immunity along and it get developing more.  No side affects were felt from it but because it is a human compound I was given a good dose of Benadryl and Tylenol to ward of a reaction.  Benadryl = nap time.

My eye appoint to check into the 'floaters' I was seeing was today and I received good news from the doctor.  Apparently the eye is full of a jelly like substance that the medication I'm on can solidify.  The 'floaters' are just solid jelly and will eventually go away once I stop the medications.  I was also told my retinas were in good shape and there was no damage to the eye itself.  The doctor even told me my vision was 20/20 and I was surprised to hear that.  I had worn glasses for years but stopped about two years ago.  My eyesight improved when I stopped wearing glasses!

After the eye appointment I was told I would need to receive blood since by RBC dropped to 24 which meant I had another four hours of clinic visit in front of me.   I sent my mother (caretaker) off to run errands and go relax at the apartment since there was no sense in both of us sitting around.  Patients are given a big recliner type chair to sit in while caretakers are stuck in a simple upright chair that are not very comfortable.  They hit me with another round of Benadryl as a premed for the blood so I spent the first two hours asleep.

Another concern was my low sodium levels.  I was not to drink plain water at all and needed to drink energy drinks to improve my electrolyte counts.  I was told to salt everything I ate and find salty things to eat too.  I never thought I would have a doctor advise me to eat more salt!  Needless to say, it was a very long day at the clinic.

Day 46:
I was asked to go back to the clinic to check my sodium levels again.  A quick visit showed my sodium level rose a little but still needed to salt everything.  Felt good all day and made a trip to a few stores.  Started feeling puny by the end of the day and ended up vomiting breakfast and lunch.  A call to the after hours clinic was made and I was advised to visit the clinic in the morning for a check up.

Day 47:
Felt much better by morning and the clinic visit at 9:00 was pretty much what I expected.  They made sure I looked and felt okay and advised I should continue taking Reglan, a motility drug that helps move food from the stomach to the gut.  I was able to make it to Sunday morning church services too and felt good the rest of the day.

Day 48:
My regular clinic was still to be kept for Monday, even though this was the fourth time in as many days that I had to go in.  Sodium levels were still improving and my counts were decent except for low platelets.

I was to meet with a physical therapist at 2:00 for initial meeting to set a baseline for my strength level, and stamina.  I did a few walking exercises and was measured for my current flexibility.  PT was to be twice a week for an hour and to consist of moderate exercises and stretching in a group setting with other transplant patients.  The meeting went well although my blood pressure dropped a bit and I became weak and dizzy.

We went to a few stores after the PT and I noticed I became very weak shopping in the afternoon and started to feel very weak in my muscles and fatigued in the rest of my body.  

My Bone Marrow Transplant: Day 35 - 41

Day 35:
Had a clinic visit at 10:00a and felt sluggish and nauseated the entire time.  I skipped doing a bag of IV fluids at home that morning because I knew I wouldn't have time to finish the bag before I had to leave for clinic.  I didn't feel dehydrated but after vomiting the previous two days, I'm sure my body needed more fluids.  Informed my NP that I still saw 'floaters' in my eyes and that my UTI symptoms had finally started improving.  I was still struggling with the need to use the bathroom often but the pain had definitely diminished.

My NP advised we would go ahead with an endoscopy - a scope down my throat to take a look at my stomach.  My stomach was aching up a storm and my esophagus was hurting too.  I was given a dose of phenagren in clinic because of the persistent nausea and it left me feeling very tired and drowsy.  Scheduled after my clinic was a one time breathing treatment to prevent a certain type of pneumonia and another chest x-ray.

After clinic, around 1:00p, I went to have the breathing treatment done and waited and slept in the waiting room for an hour.  By the time I was back in the small room for the treatment, I knew I was in trouble.  I felt very weak and was sitting down waiting on the respitory technician to start the procedure when I told her I needed a wheelchair and I needed to go home.  She stepped out to find a wheelchair and I knew I was about to pass out.  There was a small examination table in the room and I made an attempt to climb on it but never made it.  I slid down the table in a dead faint and was told later my eyes had rolled back into my head, I had stopped breathing for half a minute, and I had made snoring/gargling noises in my throat.  When I came to, I was spread eagle flat on my back with the technician calling my name and trying to get me to wake up.  A rapid response team was called and two EMT's were there and started testing all my vitals including my blood sugar.  I was eventually put on a stretcher and wheeled to the emergency room. It was around 2:00p.

A flood of nurses and doctors from the ER showed up, of course, to ask questions and check on me.  They eventually hooked up a bag of fluids to just get me hydrated.  I knew I was going to have to be check back into the hospital on 11 North but it took over eight hours to get processed from the ER to my room.  I had not eaten all day because of feeling poorly in the morning.  Had we known I would have been waiting in the ER for so long, my mother would have brought me food much earlier, but we kept thinking we would be moved to a room quickly considering my condition.  As it happened, I didn't eat until 9:00p that night and still had to wait until 10:30 for a transport to wheel me up to the room.  It was  a very long and stressful day and even though I had to be re-admitted to the hospital, I was just glad to be in the safe sanctuary of 11 North.

Food and hydration were the key to my quick recovery and I was able to shower and get into bed around midnight.

Day 36:
After I had settled in my room, I was told my red blood count had dropped from 27 in the clinic to 23.  That was probably another reason I had passed out.  Around 2:15a, they started transfusing blood and I received two units. The transfusion lasted until about 6:00a and thereby much sleep was not to be had due to the constant testing of vitals.

I was also told I would have the planned endoscopy that day and could not eat or drink after midnight.  Eating in the morning was not a problem for me, but having not eaten much the day before, I knew I needed food in my body to feel better.  I was also told I wouldn't be released from the hospital until after the scope.  Around 2:30 in the afternoon, the EDG people, who had been to see me a million times, it seemed, told me I didn't have enough platelets for the scope and it would have to be pushed back until the next day.  Great.  First order of business - my mother went to the cafeteria and got me a grilled chicken sandwich and fries.  I didn't even care if I should eat something that heavy.  I was hungry and needed food.  Thankfully, it went down okay and I felt much stronger.

At this time, I had a small mental break down.  I believe I had done fairly well mentally with the whole transplant ordeal, but having been admitted to the hospital for the third time, the constant state of my body not functioning and processing food as it should, left me feeling very down.  The long days waiting in the hospital to have a simple test done were hard mentally.  Not one to cry much, I found myself very weepy and downhearted.  I did my best to distract myself from myself for the rest of the day but looking back, I can say that stint in the hospital was not a mentally good one.

Day 37:
I received platelets early in the morning to prepare for the endoscopy and was told it would happen around noon.  The transport person finally came to get me around 1:30 and I was wheeled down to the gastrology department.  I was put in a bed in a curtain-divided room with several other people to wait my turn.  An hour and a half later, my turn was up and I went under sedation for the surgery.  I felt no pain or discomfort upon waking from the endoscopy and actually woke up hungry and ready to eat.

Once back in my room, I had to complete the breathing treatment that started the whole mess and it was a fifteen minute procedure wherein I sat on my hospital bed with a sheet of plastic boxed over me and breathed into a mouth piece.  My discharge papers were handed to me and I was finally allowed to go home.  Thank you, Jesus, was all I can say to that.

My mom and I arrived home and ate dinner, I had a small nap, and then we went to a Hallmark store and Target.  I needed to get out and be among the living.

I started a bag of IV fluid that night and noticed I had a weird headache develop at bedtime.  Cyclosporine was a 10:00p medicine and I believe it was a combination of that drug and high blood pressure that triggered the headache.  During my first hospital stay, my blood pressure always seemed to spike at night.  Oxycodone took care of the headache and I was thankful to be able to sleep in a normal bed.

Day: 38
The night brought with it more esophagus pain.  Just laying in bed and swallowing would cause a low pain in my esophagus and every time I moved or got up to use the bathroom, the pain would flair up.  Knowing it was my stomach still not behaving correctly, I medicated as I was able.

I had clinic that morning at 10:00a and was told the results from my EDG were back and showed only redness in the stomach - no ulcers or evidence of GvHD.  The results from my BMX on Sept. 14th were still pending.

Mother and I made a quick trip to Publix - a local grocery store and I spent an easy night at home.  My stomach, for whatever reason, decided to feel a million times better and I was able to eat and drink.  Not only drink, but drink bottles of water.  Before, sips of water would just sit on my stomach and ache but now I could drink larger quantities and it didn't hurt.  This was a major improvement as it is impossible to become stronger and healthier if you can't do the most common things in life - eating and drinking.

Day 39:
Felt awful in the morning as was par for the course.  I did get out to three different stores that day and could tell it was helping me more mentally to be out and about than it was probably physically.  After the excitement from earlier in the week, the last thing I needed to complain about was boredom.  But after 39 days of feeling awful and listless, life seemed to be on a hold.  Strength and energy were welcomed back anytime.

Day 40:
I spent the morning at the clinic with just a quick check in.  Having received blood and platelets the day or two before my counts were good although I was given a few potassium pills to help that level.  The evening was spent at home - working on a puzzle and keeping myself distracted from the mundane!

Day 41:
Stayed home all day long and felt miserable.  Nauseated and I felt as though my head was fuzzy and full.  A very long day spent trying to feel halfway decent.  One I would not like to repeat any time soon.

My Bone Marrow Transplant: Day 28 - 34

Day 28:
Clinic in the morning to check my levels.  I was low on magnesium and was given two IV bags while there.  My counts were steady but not showing significant growth.  WBC 3.4, RBC 35, platelets 34, and my neutrophils were in the 2,000 range.   The nurse also sent me home with a new prescription for magnesium.  I ended the visit with the mandatory chest x-ray.

Day 29:
I had taken my cyclosporine by accident the day before and I had to go back to the clinic for a quick blood draw to test my levels.  Came home and slept until 1:45p and felt pretty blah.  I still needed to use the bathroom often and it was annoying and painful.  I ached all day and felt as though I had the flu with sore bones and joints.

Day 30:
Stayed home as it was a free day from the clinic and slept all day.  I felt better in the evening, as usual, as was able to venture out and go to the grocery store with my mom.  I used an electric cart and seemed to handle the outing well.  Getting out and about definitely helps with the mental state of mind.

Day 31:
Clinic in the morning to check my counts.  The nurse wanted me to stop taking a blood pressure medicine, a liver pill I had been taking, and Reglan - a drug used to help motility of food.  I was glad to hear that I could start weaning myself off of some of the drugs.  I was given a liter of fluid to help relieve the UTI symptoms as they were still flaring up.  It seems each day is a guess on whether or not my bladder wants to behave itself or not.   I had my port cleaned and changed as has become the weekly routine.  Thankfully, having it has not been a major hassle as I don't even notice it is there half the time.  I worried at first that it would be a constant itchy reminder that I had three ports hanging out of my chest, but it has been the least of my worries.

I also informed the nurse that I noticed spots in my vision - little black floating dots.  They don't occur all the time but off and on.  An eye test was to be scheduled soon to check it out and make sure it was nothing more than all the medication I was on.  I was told the medication could affect my vision.

Because I was still having trouble getting fluids down me - water would just sit on my stomach like a rock - the nurse advised me to start getting fluids at home with an IV drip.  Walgreen's Home Infusion services would deliver bags of fluid to the apartment and I would simply have to hook a bag up to my port and let it do its thing.

I had a bone marrow biopsy at 1:30p and it was very uneventful.  Asking for the full dose of anesthetic is definitely the way to go.  The results should show what percentage of donor my marrow had become - how engrafted my transplant was.

Day 32:
Felt pretty well in the morning, a rarity.  I tried to help my mom make breakfast but kept getting over heated and had to sit down.  I started my first bag of fluids at 10:00a.  My dad flew in and surprised my mom for her birthday and it was good to have company around.  We had lunch around 2:00p and it felt like I swallowed a rock.  My stomach was heavy and ached the rest of the evening, but I did manage to eat a light dinner.  The night was miserable as I spent it going to the restroom every 45 minutes to an hour.  I really needed the medicine for my bladder to start working.

Day 33:
I woke up early and started another bag of fluids at 6:00 and it finished by 9:30.  I figured out how to run the line a little faster that way I wouldn't be dragging around the IV pole every time I had to go to the bathroom.  I felt nauseated at 7:00a and took a phenagren but was still feeling poorly at 9:30a.  By ten I had vomited up all the food from the day before.  I felt weak and drained the rest of the day and stayed home all day.  Movement did not help my stomach at all and I wanted to stay as still as possible.

Day 34:
Because of the rough time my stomach had the day before, I skipped breakfast and ate soup for lunch.  UTI symptoms improved and I only had to go every two hours instead of hourly.  Still felt poorly and weak and by 9:40 that night, I had thrown up the days' food.  Food and water were still not my friends.

My Bone Marrow Transplant: Day 21-27

(My days are less eventful so I will be posting a week's worth of posts at a time)

Day 21:
Woke up feeling very weak and tired.  I met with the doctors and they decided to do more to get my bowels to move.  They also ordered a x-ray to make sure GvHD or any type of blockage wasn't interfering.  During the x-ray, I became very light headed and started to black out.  Once back in my room, my nurse took my blood pressure and I was orthostatic - suffering from low blood pressure.  They gave me a full bag of IV fluid and I immediately felt much better.  I was simply dehydrated.   Eventually, my bowels kicked in and I was so thankful.  The nurse had threatened a suppository.  No thanks!

My mouth is almost completely healed and my stomach feels a lot better.  Fluids were increased that night and I spent a restless night going to the bathroom often.

Day 22:
Received platelets in the morning because my counts had dipped a bit - down to 17.  WBC was 1.1 and my neutrophils were .500.  I was told it was normal for counts to dip and that it should be expected.  My stomach started behaving again and it feels almost normal.  If all goes well, I'll get to go home tomorrow.  A week after having been re-admitted, I was a bit apprehensive.  There was security in having the nurses and medicines at instant disposal.

I was switched back to the the pill form of cyclosporine in preparation for my return trip home.  I felt well enough to walk for half an hour.  Around 8:00, I noticed a rash turned up on my arms but had dissipated by 9:30.  The nurse was also concerned that my blood pressure had went up.  It seems to go up in the evening hours.

Day 23:
Discharged today with news that my counts had recovered a bit.  They were high enough that I didn't need to have blood product.  Made it to the apartment around 1:00p and and snuck in a nap. Made my first trip to a store in almost a month that evening and it felt good to get out among people.  My stomach is still achey and not back to full working order but I felt a hundred times better than the week before when I was released.

Day 24:
Spent the evening before in a real bed even though sleep was difficult.  I spent the night going to the bathroom and had a sneaky suspicion I had developed a bladder infection of some type.

My first clinic appointment was today and I had to be there at 8:00a for a blood draw and to check my cyclosporine levels.  I didn't need any blood products but I did need magnesium and it was administered through an IV over an hour.  My first visit to the clinic was what I expected; a long wait.  I informed the nurse practitioner of my constant need to use the restroom and they gave me a prescription to help treat the symptoms.  The urine sample I had given to test for infection would take several days before results would be available but I was so uncomfortable I needed something to help me cope until they could get a diagnosis.  I also had to have another chest x-ray.  No big deal there.

After the clinic, I met with a lady that offered a free wig and tried several wigs on.  I choose to be a brunette!

Day 25:
Today was my first full day at home and it felt good to not have to go to a hospital.  The mornings are usually spent nauseated but I felt better around 1:00p.  My symptoms of a UTI worsened around 7:00p and I was fully miserable.  A call was made to the after hours clinic to see if I could take another pill to help the symptoms but was advised I was already taking a high dose.  The doctor on-call advised a take oxycodone to help with the pain.

Day 26:
Woke up extremely nauseated and ended up vomiting my early morning medications by 8:30a and my dinner from the night before.  I was so hoping my stomach would have corrected itself but apparently it had not.

I arrived early at the clinic and was told my counts had really jumped.  WBC 2.3, RBC 35, Platelets 25, and my neutrophils were in the thousands.  I did not need blood products but I did need more magnesium.  Cyclosporine is known to lower magnesium levels and the low level left me feeling like I had flu-like aches in my bones.

My urine sample came back negative for an infection but I was still in misery so I was also given another prescription for my UTI symptoms.  The nurse practitioner believed I had what is known as the BK virus.  The RX they gave me wasn't a cure for the virus but was the only go-to medicine to treat the symptoms.  I was told only time and higher WBC counts were cure it.  The agony.

Day 27:
No clinic visit today and I spent most of the day praying the drugs would help my UTI symptoms and sleeping.

My Bone Marrow Transplant: Day 20

I slept fairly well that night in spite of having to go to the bathroom often.  A headache greeted me in the morning and I was given oxycodone to subdue it.

I was able to eat most of my breakfast and was hoping at least something on my stomach would get it to working. My counts were excellent that morning: WBC 1.2 and neutrophils .390.  Those two numbers indicate my ability to fight off infection and I was happy to see they were increasing so quickly.

I vomited three times that day.  Mostly bile but also blood one time.  My stomach was not a happy camper and I felt miserable.   I was nauseated all day long and any type of movement seemed to trigger vomiting. The plan for the rest of the day was to just not move.

My Bone Marrow Transplant: Day 19

Headache developed around midnight due to the cyclosporine and I was given drugs for treatment.  My lab results came back early and I needed to receive a blood transfusion; the premeds given to me helped me get a few hours of sleep.

My mouth felt much better and was only slightly swollen.  The rash was almost gone and did not itch.

The doctor's visit that morning was mainly about getting my stomach to wake up and start functioning better.  My stomach and bowels were at a stalemate.  They were also concerned that the cyclosporine was increasing my blood pressure so they started me on a new medication.

I noticed around 9:45p a rash on my arm had developed that was different than any rash I had before as was lower and on the inside of my arms.  The nurse decided we would watch it through the night and it was gone by morning.

My Bone Marrow Transplant: Day 18

Around 12:20a I called the nurse in for a round of morphine for a persistant headache.  I also noticed the lower parts of my arms had started to itch.  Benadryl was administered and I slept well until 3:45a when I awoke and noticed my arms were still itching.  A topical lotion, Sarna, was given  to relieve the itch.  It worked.

About the same time, a nurse came into hang a bag of magnesium and told me that my WBC had jumped from .3 to .5 and my neutrophils were .27, a major jump from .14 the day before.  My platelet counts were only 15 so I got an infusion around 8:00 and ended up sleeping until after noon due to the premeds.

I was able to eat breakfast and lunch but not dinner.  My stomach was still unsettled and felt heavy.  My rash from the day before had stopped itching and I noticed my mouth was not as swollen.  Ended the night with a cyclosporine headache.