I'm coming up on my 3rd transplant 'birthday' in August, so I decided to visit my old blog notes. The below was written 2 years ago and, obviously, never finished. It's been sitting in 'draft' mode ever since. I think it's time to post it.
I do not want to write this. I have put it off for as long as I as my OCD will allow. There must be an ending and I must write it even though I am kicking and screaming on the inside.
I have not re-read the last post I wrote about my transplant. I wrote it at a very difficult time and I don't want to relive it. I may read it again in the future, but not today.
Everything that follows may not be in the correct order, but they are the most pressing memories I have about the last two months in Nashville.
*****
I was approaching day 100 when I had to be admitted to the hospital for GvHD of the GI tract, ignorantly thinking it would be a few days stay. Being unable to hold food down or stay out of the bathroom required me to stay in the hospital for three and a half weeks. I was on IV therapy food during my stay and was finally allowed to eat chicken broth on Thanksgiving day. That will be a Thanksgiving meal I will never forget. I was dismissed from the hospital on December 5th and allowed to go stay at our hotel room. A by-product of the IV therapy and my stomach not processing and absorbing food as it should have was edema. The protein abulim in the stomach was not processing the IV food I was given so it remained in my body as 'waste'. Gravity pulls it to your lowest extremities so my legs were completely full of 'waste'. I could press my hands into my thighs and a complete hand print would appear and stay for minutes. It wasn't just a small indention either, it was a completely sunken handprint. My calves, ankles, and feet were much worse. My legs were so heavy I had to use my hands to pull my legs up onto the bed or lift my legs into the tub. I finally had to get a medical walker-type contraption to put around the toilet so I could lift myself up without help. Walking felt like I had a weight belt tied to my waste and caused my back to ache. As miserable as it sounds, there were times of comedy that helped me get through the physical burden. I could cross my legs while sitting up in bed and a 'valley' would remain in my feet and shins. I could also massage my feet and legs and 'move' the waste. It felt like playing with a water balloon with gel. My dad had came into town (when I REALLY needed him) and he would massage my feet for me. It was amazing to see how twenty minutes of him working on my feet could reduce its size by half. To treat edema, there were three things I had to do. Eat a LOT of protein (100 grams a day), wear compression socks, and keep my feet elevated. I knew coming into the transplant I would feel weak and tired, and internally exhausted until my body began to heal itself. I had not expected external complications - having to drag my heavy body around. The extended hospital stay did not help. I lost a great percentage of my muscle mass. My weight stayed about the same throughout the transplant; the muscle weight I lost was replaced with the 'waste'. When my stomach started working again and the fluid began to dissipate, I started measuring the circumference of my legs to track how much mass I was losing. In a week's time I lost over 22 inches in my legs/calves/ankles/feet. It was the first time in my life that I had skinny calves! To make matters worse, the CMV virus revived itself and I had to start harsh medicine again to combat it. Thirteen days straight. The name of the drug was foscarnet, however, my family and I created a few alternative names for it, fos-darn-it, and the 'f-word'. We are awful. The drug is very draining on a person's energy and it, coupled with muscle loss and the edema in my legs, had me silently cheerleading myself to do the simplest tasks. I would repeat the scripture, "I can do all things through Christ who gives me strength" over and over during my morning ritual to get ready. Some days I emphasized the word 'strength' and other day's it was 'all things'. Every day I emphasized, "through Christ". Walking into the clinic from the parking garage is about a 2 minute walk for a healthy person; it took me over five minutes as I had to shuffle along in house slippers. (They were the only shoe that would fit on my feet and still required me to manipulate the edema in my feet so I could squeeze into them.)
I spent a lot of time in the bathroom. Between recovering from the GvHD in my gut and the BK virus in my bladder, I went to the bathroom often and it was always painful. For many weeks, I would get up during the night every 30-45 minutes to use the bathroom. Getting a straight hour and a half of sleep was rare and celebrated. Weak internally (foscarnet), externally (edema), and just plain tired from never sleeping well had finally taken a toll on me. I was done. Tired. Ready for it all to be over in any way possible. Needless to say, I had prayed a lot during the journey but my prayers changed when I reached my limit. I prayed prayers I never thought I would pray. I asked the Lord for things that I never thought I would ask Him. I begged and pleaded. The bathroom became my prayer closet. It was the only place I could be physically alone, although here was no real privacy as the walls were paper thin.
And that's where it ended. Lots of memories came flooding back. I am so grateful that time passes and memories fade. His mercies are new every morning.
Friday, July 31, 2015
Saturday, July 6, 2013
A Token
Thursday, December 13, 2012
My Bone Marrow Transplant: Day 122 - Breaking the Silence - Baring My Soul - Believing in My Healer
I have been silent the last month and a half concerning my bone marrow transplant. It has been a very hard past six weeks for me. My body is weak beyond words. I spent three and a half weeks in the hospital due to a very bad case of GVHD of the GI tract. Food would not stay down and I was put back on steroids and IV food and meds. A side affect of the GvHD was that my intestines/stomach stopped absorbing nutrients into my vessels and veins and all the IV medications and TPN (IV food) have pooled into my legs. Severe swelling from my thighs to my toes (edema) has just added another physical burden to already internally weakened body. I feel as though I'm lugging around weights and am unable to lift my legs without using my hands. This external physical disability has proven to be such a trial for me. I have prayed and am continuing to pray for a quick work of healing. I know God is healing me everyday concerning the edema, but I would like to ask all those who know how to pray to ask the Lord for a divine miraculous healing. I am doing everything the doctors have advised to treat the swelling, but I feel the need to reach out and ask others to join me in prayer. Please pray for the actual GVHD also. Thanksgiving day I was only able to eat chicken broth, but thank the Lord I am now able to eat solid mild foods. My intestines are slowly healing but they constantly churn and ache. I need a special touch on my GI tract.
Concerning the actual transplant, I had a bone marrow biopsy recently and its preliminary findings showed that my marrow was producing blood but the doctors believe the specific brand of immunosuppressive drug they have had me on from the beginning is attacking and destroying what has been made. A 'cousin' drug will replace the one I had been taking and hopefully won't attack my marrow. I am asking all of you wonderful people who have been praying for me this whole time to pray specifically that the new drug will work and my body can finally start to heal and my blood counts to grow.
I also have three viruses that are persistently hanging on. BK, CMV, & EBV are their names. I am asking for prayer that these viruses will die out and leave my body. Please pray with me.
Mentally, I have never been so unstable. I feel so broken inside with no will to live or move or fight to live another day. Rest is my daily desire. Rest from pain, from weakness, rest from living at times. Everyday is a fight for peace and sanity. I want to try to put into words the condition of my mind but I fear I can't truly explain it. I have to push myself to move, bathe, eat, and even sleep. Anxiety chokes me at times and I feel as though my mind will explode. But I have found a sanctuary. In the bathroom, of all places. It's the only 'room' in our hotel room where I can be alone and talk with the Lord.
I have cried and begged and pleaded with the Lord to take me home with him. I have asked and prayed for just blessed rest. And I have had the most close encounters with Jesus Christ than I have ever had in my life. During my pleas for relief and mercy, the power of the Holy Ghost would completely fill my body and overtake me. Tongues come forth so strong and powerful. and I feel as though Jesus Christ himself is inside me. My prayers turn to requests of miraculous healing virtue to flow through my body. For divine miraculous healing to flood into every part of me. And His strength comes! Filling my entire being with electric power. He hears me! He heals me! He comes into that bathroom and surrounds me. He touches my mind and my soul and he calms my fears. His mercy covers my worn and tired soul and I feel alive again. He even showed up with a special touch while I was brushing my teeth! Speaking in tongues and toothpaste are quite a combo. But I stopped what I was doing and received His touch. Anytime He shows up, I pray I can always be so sensitive to Him.
Time will pass and I pray this transplant will just be a horrible nightmare that I can forget. The one thing I don't ever want to lose is the brokenness and closeness I have felt from Jesus. I pray daily for Him to carry me. To carry me through each hour, each day, each moment. To hold me so close and let me rest in him. The nurses and doctors use the word 'fight' to describe how to make it through this ordeal. I have chosen the word rest. I will rest in Him. I will rest in my Healer and let Him carry me through. My fight is gone and the only thing I must do is say 'not my will, but thine be done.' As a human, it is a hard thing to surrender but it is the only place to find rest. Rest is what I most desire.
I would also like to express my love and appreciation for my mother. She has literally saved my life. This has been such a toil on her. She has been so strong and brave during this entire time that I am in awe of how strong of a woman she is. I ask all of her friends to please keep her in your prayers. Pray for her everyday. Pray for health, healing, and peace of mind. Pray for her strength to keep pulling me through this hard time.
I ask that you all rebuke the spirits of, anxiety, oppression, and depression. That peace, hope, and joy would fill our current living area.
Please pray for my husband. A greater, kinder, patient man, I have never met. He has been so strong during this time. I feel awful that I can't be with him and be the wife I need to be. That is its own burden. Please pray for him and be there for him. Our family needs your prayers.
I want to say thank you from the bottom of my heart for every prayer that anyone has uttered on my behalf. At times I feel as though it's greedy of me to ask for prayers but they are the only thing I truly need. I have learned the value and need to pray for others that are suffering. I sincerely pray for all those that are sick and in need of healing.
We still have no date of when I can be released to go home. I am dependent on blood and platelet transfusions now and until my marrow gets a fighting chance to produce blood I'm not stable enough to leave.
I ask you all to pray and believe for a miraculous work that God may receive all the glory. That everyone will know He is real and divine and ever-present. I want to testify of all He has done for me. To declare boldly that Jesus Christ is a Healer and that He does a quick work.
Pray. Pray. Pray.
Thank you.
Alicia
Concerning the actual transplant, I had a bone marrow biopsy recently and its preliminary findings showed that my marrow was producing blood but the doctors believe the specific brand of immunosuppressive drug they have had me on from the beginning is attacking and destroying what has been made. A 'cousin' drug will replace the one I had been taking and hopefully won't attack my marrow. I am asking all of you wonderful people who have been praying for me this whole time to pray specifically that the new drug will work and my body can finally start to heal and my blood counts to grow.
I also have three viruses that are persistently hanging on. BK, CMV, & EBV are their names. I am asking for prayer that these viruses will die out and leave my body. Please pray with me.
Mentally, I have never been so unstable. I feel so broken inside with no will to live or move or fight to live another day. Rest is my daily desire. Rest from pain, from weakness, rest from living at times. Everyday is a fight for peace and sanity. I want to try to put into words the condition of my mind but I fear I can't truly explain it. I have to push myself to move, bathe, eat, and even sleep. Anxiety chokes me at times and I feel as though my mind will explode. But I have found a sanctuary. In the bathroom, of all places. It's the only 'room' in our hotel room where I can be alone and talk with the Lord.
I have cried and begged and pleaded with the Lord to take me home with him. I have asked and prayed for just blessed rest. And I have had the most close encounters with Jesus Christ than I have ever had in my life. During my pleas for relief and mercy, the power of the Holy Ghost would completely fill my body and overtake me. Tongues come forth so strong and powerful. and I feel as though Jesus Christ himself is inside me. My prayers turn to requests of miraculous healing virtue to flow through my body. For divine miraculous healing to flood into every part of me. And His strength comes! Filling my entire being with electric power. He hears me! He heals me! He comes into that bathroom and surrounds me. He touches my mind and my soul and he calms my fears. His mercy covers my worn and tired soul and I feel alive again. He even showed up with a special touch while I was brushing my teeth! Speaking in tongues and toothpaste are quite a combo. But I stopped what I was doing and received His touch. Anytime He shows up, I pray I can always be so sensitive to Him.
Time will pass and I pray this transplant will just be a horrible nightmare that I can forget. The one thing I don't ever want to lose is the brokenness and closeness I have felt from Jesus. I pray daily for Him to carry me. To carry me through each hour, each day, each moment. To hold me so close and let me rest in him. The nurses and doctors use the word 'fight' to describe how to make it through this ordeal. I have chosen the word rest. I will rest in Him. I will rest in my Healer and let Him carry me through. My fight is gone and the only thing I must do is say 'not my will, but thine be done.' As a human, it is a hard thing to surrender but it is the only place to find rest. Rest is what I most desire.
I would also like to express my love and appreciation for my mother. She has literally saved my life. This has been such a toil on her. She has been so strong and brave during this entire time that I am in awe of how strong of a woman she is. I ask all of her friends to please keep her in your prayers. Pray for her everyday. Pray for health, healing, and peace of mind. Pray for her strength to keep pulling me through this hard time.
I ask that you all rebuke the spirits of, anxiety, oppression, and depression. That peace, hope, and joy would fill our current living area.
Please pray for my husband. A greater, kinder, patient man, I have never met. He has been so strong during this time. I feel awful that I can't be with him and be the wife I need to be. That is its own burden. Please pray for him and be there for him. Our family needs your prayers.
I want to say thank you from the bottom of my heart for every prayer that anyone has uttered on my behalf. At times I feel as though it's greedy of me to ask for prayers but they are the only thing I truly need. I have learned the value and need to pray for others that are suffering. I sincerely pray for all those that are sick and in need of healing.
We still have no date of when I can be released to go home. I am dependent on blood and platelet transfusions now and until my marrow gets a fighting chance to produce blood I'm not stable enough to leave.
I ask you all to pray and believe for a miraculous work that God may receive all the glory. That everyone will know He is real and divine and ever-present. I want to testify of all He has done for me. To declare boldly that Jesus Christ is a Healer and that He does a quick work.
Pray. Pray. Pray.
Thank you.
Alicia
Tuesday, October 9, 2012
My Bone Marrow Transplant: Day 56 - 62
The week was one centered around the treatment of the blood virus, CMV. The drug used to treat the CMV, foscarnet, was really starting to take a toll on my body. I had to go into clinic every day for a dose and its side affects were everything I had been warned about.
Labs were drawn each morning to check my kidney function. The foscarnet was known to be hard on the kidneys so each dose was based on what the doctors thought my body could handle that day. I was given a nausea medicine, phenagren, before each dose and it did the trick to the keep the nausea at bay. My face would tingle and my entire face and even my gums would start to tingle and go numb. My limbs would feel absolutely drained and it was a chore just to stand up. Completely and utterly wiped out was how the inside of my body felt and all I wanted to do when I got home was sit down and sleep. I usually ended up recovering a sense of normalcy around dinner time.
By Tuesday, my CMV levels had greatly increased and it was decided that I would need to go to the clinic for an extra dose at night. The doubling of the dosage really took a toll on my body. Getting up from a chair was a challange! Wednesday through Friday I returned to the hospital's infusion center for another dose of Foscarnet - a two hour process last from 8 - 10. Early days at the clinic and long nights at the infusion clinics made for an exhausting week.
Sunday another CMV test was taken with hopes the counts would go down due to all the heavy dosing that had been given.
Labs were drawn each morning to check my kidney function. The foscarnet was known to be hard on the kidneys so each dose was based on what the doctors thought my body could handle that day. I was given a nausea medicine, phenagren, before each dose and it did the trick to the keep the nausea at bay. My face would tingle and my entire face and even my gums would start to tingle and go numb. My limbs would feel absolutely drained and it was a chore just to stand up. Completely and utterly wiped out was how the inside of my body felt and all I wanted to do when I got home was sit down and sleep. I usually ended up recovering a sense of normalcy around dinner time.
By Tuesday, my CMV levels had greatly increased and it was decided that I would need to go to the clinic for an extra dose at night. The doubling of the dosage really took a toll on my body. Getting up from a chair was a challange! Wednesday through Friday I returned to the hospital's infusion center for another dose of Foscarnet - a two hour process last from 8 - 10. Early days at the clinic and long nights at the infusion clinics made for an exhausting week.
Sunday another CMV test was taken with hopes the counts would go down due to all the heavy dosing that had been given.
Tuesday, October 2, 2012
My Bone Marrow Transplant: Day 49 - 55
Started this week feeling very week and drained. I was able to attend a painting class on Tuesday with my mother and even though I was very tired and nauseated I was able to get out of the house and paint a plate. It was good therapy.
The next clinic visit showed I needed platelets so they were ordered up and I was also told I had developed a new virus. CMV. I had been warned before transplant that this virus was one they would be testing for on a regular basis. It's a virus that attacks the blood and if caught and treated soon enough has no immediate side affects. If left alone, it would eventually damage my organs. One of the two drugs they use to treat the virus is foscarnet. Side affects include nausea, depletion in electrolytes, GI upset, and a general drainage of strength and energy. The nurses said I would pretty much feel awful and tired all the time. The drug would be administered along with a bag of fluids; half given before the foscarnet and half afterwards taking approximately 3 hours. I would also need to come into the clinic everyday to get treatment for the rest of the week.
The next day in clinic a vomited up breakfast in the clinic right after taking my 10:00 meds. I had felt nauseated all day and that last bit of water to take my meds was all my stomach could take. I was told if I couldn't keep pills, liquid, or food down by the time I left the clinic I would be admitted to the hospital. No! I ended up eating a taco before the end of the day and was free to go home. Thankful! I will never understand how my stomach can be fine for days in a row and then decide it doesn't want to behave.
My headache has become nonstop and oxycodone does not help. I was given a prescription of Imatrex and it finally relieved the pain. The headache is positional and I can turn my head a certain way and it will send pain shooting up the back of my neck but if I leave my head still or in a certain way there is no pain. The doctors ordered an MRI to be taken late that evening to scan my neck and my brain to check for a possible pinched nerve. It lasted an hour and I slept through most of it because of all the drugs I had been on that day.
Finished out the week with daily visits to the clinic for a daily dose of foscarnet and a test to check the level of virus in my blood was done on Sunday. Results were expected to available by Tuesday or Wednesday. The side affects I had been warned about were spot on. After each dose I could feel how drained and weakened by body was becoming. I also had to be given nausea medication during the foscarnet and it made me drowsy. I felt as though the entire week was a just a daily trip to the clinic to take a nap.
My electrolytes were taking a hit too. I would receive a bag or two of magnesium, or a bag or pills of potassium, sodium phosphate, or calcium. The NP was very good about monitoring my blood and electrolyte levels.
The next clinic visit showed I needed platelets so they were ordered up and I was also told I had developed a new virus. CMV. I had been warned before transplant that this virus was one they would be testing for on a regular basis. It's a virus that attacks the blood and if caught and treated soon enough has no immediate side affects. If left alone, it would eventually damage my organs. One of the two drugs they use to treat the virus is foscarnet. Side affects include nausea, depletion in electrolytes, GI upset, and a general drainage of strength and energy. The nurses said I would pretty much feel awful and tired all the time. The drug would be administered along with a bag of fluids; half given before the foscarnet and half afterwards taking approximately 3 hours. I would also need to come into the clinic everyday to get treatment for the rest of the week.
The next day in clinic a vomited up breakfast in the clinic right after taking my 10:00 meds. I had felt nauseated all day and that last bit of water to take my meds was all my stomach could take. I was told if I couldn't keep pills, liquid, or food down by the time I left the clinic I would be admitted to the hospital. No! I ended up eating a taco before the end of the day and was free to go home. Thankful! I will never understand how my stomach can be fine for days in a row and then decide it doesn't want to behave.
My headache has become nonstop and oxycodone does not help. I was given a prescription of Imatrex and it finally relieved the pain. The headache is positional and I can turn my head a certain way and it will send pain shooting up the back of my neck but if I leave my head still or in a certain way there is no pain. The doctors ordered an MRI to be taken late that evening to scan my neck and my brain to check for a possible pinched nerve. It lasted an hour and I slept through most of it because of all the drugs I had been on that day.
Finished out the week with daily visits to the clinic for a daily dose of foscarnet and a test to check the level of virus in my blood was done on Sunday. Results were expected to available by Tuesday or Wednesday. The side affects I had been warned about were spot on. After each dose I could feel how drained and weakened by body was becoming. I also had to be given nausea medication during the foscarnet and it made me drowsy. I felt as though the entire week was a just a daily trip to the clinic to take a nap.
My electrolytes were taking a hit too. I would receive a bag or two of magnesium, or a bag or pills of potassium, sodium phosphate, or calcium. The NP was very good about monitoring my blood and electrolyte levels.
Tuesday, September 25, 2012
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.
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.
Tuesday, September 18, 2012
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.
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.
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