As corny as it sounds I helped my son build a shed today. He had assembled the floor yesterday. We framed out the four walls today. The rain stopped the building for now.
My back aches a little bit.
It was fun.
As corny as it sounds I helped my son build a shed today. He had assembled the floor yesterday. We framed out the four walls today. The rain stopped the building for now.
My back aches a little bit.
It was fun.
Perhaps if one would choose, a bit more experience would precede making a pie for company.
About Thursday of last week, something she saw on television or read in the paper caused her to decide that she would make a pie for dessert on Sunday.
In her mind’s eye, it was no big deal. In her mind’s eye there is no Parkinson’s disease. In her mind’s eye she has plenty of stamina. On the way home from dinner at Through the Garden Restaurant on Friday evening we stopped at the grocery and bought some apples. On Saturday she cut up and peeled three of the four apples and had to sit down. I peeled and cut up the last one and another for just-in-case.
She took her meds and laid down for a bit. When she felt a little better, I made the crust under her tutelage. We (I) rolled it out and started over about a dozen times. I quit to put on shoes and gather my stuff for a trip to the store for a premade crust. On the way through the kitchen I stopped to try just once more with a twist.
My twist worked and we (I) assembled the pie.
Today we will take it to my son’s house to see how it turned out.
My other son’s wife is an expert pie maker. I probably should have subcontracted the pie to her and they live pretty close by. Maybe next time I will do this or maybe next time I will practice making crust.
Martha Stewart has a website full of ideas.
Another roboshit call from some computer called “amazon”. Even the scammers are automated. Mr. Robo Death shown here maybe out of a job.
Ring! Ring! Ring! The pseudo-landline rings it cheery tone in the late morning. “Hello, is is a call about your amazon account…” — but Amazon, I have made purchases through and from Amazon, does not know this number for me. I have associated a mobile number with my account.
It is not surprising that there are so many robo-calls. “This is an apology call from your electric utility”. This same technology is much akin to the targeted ads that track any online search. They politely sit on the side of the screen and say “Pick me! Pick me!” If you are searching on a small device those same ads cover the information that you want and often reverse the “go away” and “Pick me” buttons.
At home on the VoIP pseudo-landline, answering the phone with “Supp!” or “Ahoy, ahoy!” instead of the traditional “Hello” confuses the software.
If you let the call go through it often connects you to a human in Mumbai or Jakarta.
It is an amazingly complex and technological world we live in.
Be careful out there.
In the middle of the night, very early morning, she gets up and becomes argumentative about staying up. Its about 3AM and I admit to being less than social at 3AM. Today for the first time she told me what was happening to her. She has severe leg cramps and partial immobility.
She has found that she can combat that feeling by struggling to get up and move around a bit.
I charged off on a search this morning with the internet of all knowledge and found this timely article at parkinsonsdisease.net [https://parkinsonsdisease.net/living/leg-pain].
This pain is described as constant burning sensation with occasional burst of sharp pain. As it was in my case, this pain is commonly exacerbated by cold and by light touch. I could not stand the sheets to touch my skin and being in a cold room sent my pain through the roof. This type is usually bilateral but it may start on the side where other Parkinson’s symptoms begin. For me, it was the leg where my rest tremor began.
When related to levodopa, it usually occurs as a wearing off but can also occur at peak dose. In most cases this leg pain is unilateral and has direct correlation to medication intake. When pain is due to dystonia, it is more common in early morning. This type of leg pain is usually accompanied by toes curling and foot abnormally posturing.
Musculoskeletal pain occurs due to rigidity, abnormal posturing, and lack of mobility leading to pain in the legs. It may also affect the joint like the hip or knee. This pain is usually more pronounced on the more affected side. It can be localized or widespread and also can be sudden.
In this case, the pain is caused by compression of nerves in lumbar area which results in weakness, numbness and tingling, and loss of reflexes from buttocks to foot in a distribution of a nerve. It can be acute or chronic, and can be worse with standing and sitting, or better with laying down. Of note: in my experience many patients including myself have these symptoms not because of physically herniated disc but rather by the stretching of a nerve in the canal as it exists due to severe musculoskeletal rigidity and abnormal posturing.
So there you are problem solved. 🙂 But – there is always a but – asked my wife of many years to read the referenced article and describe or discern as best she can the kind of pain she is feeling. Out comes a description of stabbing pain in her heals. In her words – like someone is stabbing pins into my foot.
So that sucks! Peripheral neuropathy can be related to Parkinson’s disease. Pardon my french but goddamn this disease. She often has numbness in her hands in the morning. It is hard for her some days to simply hold a spoon to put cereal in her mouth. I bought her four kangaroo cups (invented by a ten year old to help her grandpa) to help with her unsteadiness with the orange juice she has every morning. These work great and she likes them, so she uses them often.
Dealing with an ever changing range of symptoms, pains and degenerative cognition can wear one out.
Carpe Diem! I’m off to research different sorts of beds and mattresses, etc.
She put on her year old Nike walkers. It was one of those sunny spring days that says fresh and new is what we are up to today.
Where should we go? – c;
Let’s go up Troy. I hate to go through the dip.- p;
There is a quick look around and search for keys and other kit.
What’s the weather like? – c;
Warm. Probably no sweater. – p;
Are you sure? I thought it was supposed to rain. – c;
Nope. Sure. Look. – p;
He holds the door to the front porch open.
It does look nice out. – c;
Out the door and off on two miles or so.
Cortelyou (core-tell-you or cortil-you, your choice) avenue is named after John Cortelyou who either developed or owned that part of Pleasant Ridge. On plat maps the area is referred to as the John Cortelyou subdivision. John and his wife Martha are buried in the Pleasant Ridge Presbyterian Cemetery on Montgomery. The pavement is narrow and parking is only permitted on the west side of the street. The part of the street that they live on if allowed to connect to it would make an acute angle to Ridge road. Troy avenue which meets Cortelyou just before it drops down a short incline towards Losantiville road makes the base of a right triangle with Ridge and Cortelyou.
Troy avenue meets Ridge road precisely where Ridge curves to the right to head south again after coming up the hill from the little valley that holds Amber creek. The short street meets the thoroughfare with an acute angle to the left and a right angle to the on the other side. There are mostly single family houses on the south side of the street and mostly multifamily buildings on the north side. It is a pleasant street. Narrow along its length but bright and sunny with few large trees along its length to obscure the view towards Ridge road.
Ridge road is poorly named because it never travels along a ridge in the earth but rather perpendicular to several. It would be more aptly named Over the Ridges Road but, no doubt, this name was rejected when the names were being given out or the makers of maps became tired of precision and in their gay manner shortened the name to Ridge rather than ‘Over the Ridges’ or ‘On the Way to Ridge’ or even ‘Up to the Ridge and down Again’ road.
As they walked they spoke of their surroundings and of people they knew. He came with her as he usually did on this day to get to know her better. They were empty nesters now. All three of their children were grown and moved away. He did not often want to simply walk around the neighborhood but she was okay with that she pushed him to get out of the chair and move. It is a nice day. Let’s go.
They took the acute angle at the end of the street and walked north in front of the houses that were originally built, as the story goes, to show off the type of housing available to be built in nearby Norwood. No matter the back story these are beautiful old houses set far back from the west edge of the street. Some well kept. Some developing creeping overgrowth. An earlier majesty and grace left for some later owner to recover and let the homes bloom again.
At the top of the rise where the road dipped back down into the valley, they crossed into the neighborhood on the east side of Ridge. Through a small dip in the topography and up toward Grand Vista. Grand Vista climbs a hill to the left as they walked toward Montgomery road. This road is known as the Pike by the older generation.
At this point the conversation is interrupted to ask, up or not?
I think not -c.
Okay. – p.
Following Grand Vista to the cul de sac and back out will add over a mile to the walk. One can turn a mere walk into a trek in this fashion. They continue to Montgomery Pike.
Turning south on Montgomery they headed back into the business section of the old village of Pleasant Ridge just one of the ridges that over the ridges road went over in its meandering trail south toward the old village of Oakley. Near this turn anchoring one end of the business grouping is the Pleasant Ridge branch of the Hamilton County Public Library. They paused for a moment to allow a young mother to organize children, bicycles and a stroller as the family left the library with their booty.
It is a magnificent day for a walk around the neighborhood and they are enjoying themselves. The temperature is warm. The sky is the shade of pure blue that appears after a spring shower washes the air. The daffodils are near the end of their reign but stubbornly hanging onto their beauty as early tulips attempt to shoulder them out of view.
As they near Kincaid Rd. another key decision point he asks, Kincaid?
Yes, she replies.
They turn north on Kincaid on the west side of the street. During this entire walk p. has moved to her right or left to place himself between her and the street. In his own mind it is proper for the male to position himself between the female and the passing traffic. He is not certain where this ingrained behavior has come from. He merely knows that is what he needs to do. So, he has placed himself on her right side as they walk down the street.
As they walk he notices that occasionally she struggles to keep with him and this causes him to slow a little and look down at her feet. The walk is narrow and he thinks that perhaps he has hogged more of the width than he is entitled to. As he watches she is not lifting her left foot always. She is dragging it in a limping motion.
Being a man, he teases – are you having a stroke, dear?
She replies with – I don’t know. My leg does not seem to work right.
They slowed more and he held her hand as they walked. She seemed to be struggling to maintain any sort of normal gait. When they got to Harvest they turned and headed back home.
I always remember Cheryl’s initial struggles with Parkinson’s this way. She remembers a different story. About this time she was a big deep water aerobics fan and participated in a class at the YMCA about three times a week. Later on we joined the Jewish Community Center and she did deep water aerobics there.
If you ask her she will describe going in circles in her water aerobics class when she wanted to go straight down the pool. She probably did that but what I remember most is this little walk we took one day many years ago.
“Not everything that is faced can be changed, but nothing can be changed until it is faced.”James Baldwin
I do not know much about James Baldwin. He was a black man and an author. He wrote “Go Tell It on the Mountain” and other things. He died a while ago. This quote which I tripped over this morning reading through other articles not from mainstream media as my sister-in-law likes to say, spoke to me. Lately, Cheryl has been struggling with seeing extra people in our home and upon occasion, though not wondering who I am, seeing me and sometimes not seeing me.
Yesterday evening she asked me if I had talked to Paul about something. I do not remember what the something was. It was not important . I quickly realized that she thought I was not me. I replied with I am Paul.
These moments seem to come early in the morning or late in the evening. It is dark. The lights are on here and there.
She talks about dad doing this and dad doing that. The first time she started telling me about dad was when I changed the dimmer switch on the light fixtures in our master bath. I had added a newer dimmer control with a toggle. I had thought it to be more convenient for operation in the night. It is and she approved of its installation. She told me so that night by saying – did you see the new light switch dad put in? It works great.
I did not ask who she thought I was. I merely acknowledged that it was a good thing that he put it in the bathroom.
That guy who brings the pills… is a common early morning remark lead in to some comment I said when I got out of bed to turn off the alarm and retrieve her first dose of medications for the day. There are many of these; That guy who brings the pills in the morning, he said we were going to the store today. (for example)
Extra people appear to her in our home. Not religious apparitions but little girls and sometimes their guardian an older woman will appear with them. A few days ago when I returned the bowl that had contained her pills and the water glass to the kitchen, she asked me what that woman wanted. I told her that there was no woman there. I was merely putting the glass away. She accepted that.
For many months, I had accepted that this observed change in her behavior and thinking was just a natural progression of Parkinson disease. This behavior does not present itself when she and I visit her neurologist. I sent him a note before our last visit. We talked about it at length when we were there last time.
We are in the midst of slight medication adjustments and a series of pathology tests to rule out any physiological problems that could cause symptoms such as these.
So far these are all negative which makes me a bit sad. She is in the minority of parkies that the disease affects her cognitive function.
It is now more important than ever to seize the good moments, live in the present and jettison the anxiety for the future.
Face the thing. Maybe the outcome can be changed. As a caregiver do not forget that you have greater knowledge of your loved one than the doctor does. Tell the doctor what you see. It will help to find a solution.
And don’t forget to Carpe Diem!
Who are you?— Peter Townsend
Who, who, who, who?
Who are you?
Who, who, who, who?
Who are you?
Who, who, who, who?
Who are you?
Who, who, who, who?
Why does it make me so angry? It seems as though our entire married life these days is caught up with this disease of Parkinson.
In our younger lives we would have lively discussion and even arguments about stuff. Issues of the day, kids doing this, kids doing that, where to go on vacation, what color to paint the walls, any or all of those things were up for grabs. Those sorts of discussion are lost to time.
In the fifty years since we married, we have had many discussions and arguments. It is impossible to not argue with the one person in life whose knowledge and opinion you value more that anyone else. If I did not care for her greatly her thoughts would be of no import to me. Parkinsonism has changed this in our lives. She does not have the strength of mind to fight back and stand her ground in a discussion. I miss that.
I think that part of what makes me so angry is the fact that it is unfair for me to be so. There is a creeping despair that enters my heart when I come to the realization that I am treading on her heart. It is a kind of slow motion grief.
I worry for the future and what that might bring. I am often longing for the past when the independent Cheryl that I married was still my partner in life. She has ceased to be that. In ever expanding little steps she has given up her independence. She leans more and more on me. Perhaps some of my rage manifests because I do not want to accept the responsibility of her dependence.
Perhaps in my heart I want her to heal and despair of the fact that it will not happen. When obvious confusion appears it terrifies me to realize I was not paying attention at the time.
Perhaps in my heart I struggle with the patience necessary to hear stories repeated. Perhaps my anger arises from the retelling when I have shifted my thoughts to something that I has my interest and I am unwilling to give attention to the retelling.
Perhaps it is tiring to live in the present. Perhaps there is no solution except to live in the present.
Carpe the damn Diem. This Diem is now gone and was not seized.
An opportunity lost and it makes me angry and a little sad.
Another nuance to the problem of hallucinations, confusion and delusion is how the conditions interact.
Recently we have had discussions about two little girls and some older woman – possibly their grandmother or guardian – playing in the bathroom when Cheryl wants to use it. Sometimes the little girls are playing with stuff in Cheryl’s office in the evening when she is working the birthday card list. (She thinks.) Often when she is through for the evening she will close her office door to keep the girls out.
Probably last Friday after she had washed her hair and put on the special conditioner, she put those items in a special place where the hallucinatory girls could not get to it and she would not have trouble remembering where she placed it later. This is speculation on my part. I was not here.
This morning there was a crisis. The shampoo was not in its ordinary place under the bathroom sink. It certainly is possible someone carried the shampoo off somewhere but I expect to find it in some odd spot where the girls cannot get to it and Cheryl will not forget where she put it.
So far that special place it nowhere in my little office area.
Another thing that will keep my life interesting, keeping track of the special shampoo.
This is Parkinson’s Awareness month but for me it is just another month. I have expanded these thoughts and comments specific to Cheryl. In the comments below I have added information that she might say but these days Parkinson’s has robbed her of language. She can speak fine but words can be hard to retrieve and occasionally some severe confusion about what is coming, where she is, or, for that matter, what happened moments ago.
To the Ones That Love Me…This is what you need to know about me and my Parkinson’s Disease.
This is not a death sentence, PD can be managed. Encourage me to exercise daily, it is MY MEDICINE. – It is remarkable how much a few simple exercises can help Cheryl. Many of the exercises are simply vigorous movements or stretches. At her Parkinson Community Fitness the class exercises are tailored to folks dealing with PD. She cannot do all of the motions that the instructor asks but she tries her best to do them. The exercises can pick her up in a way that acts on her body like an extra dose of meds. Many times afterward we will have a late lunch somewhere because she is feeling good.
Early on she recognized how much exercise helped her to feel good. When her mom was still alive she spent a great deal of time at Bridgeway Pointe helping Elaine with various things. Elaine regularly exercised on a recumbent bicycle-like exercise machine. Cheryl did this as well with her mom and occasionally with me at the YMCA. She sought out an exercise regimen at the Y with one of the trainers there and developed some exercises specific to her particular inabilities. Later when PCF opened we joined. It has been and still is perfect for a non-athletic person such as Cheryl.
Don’t make assumptions about my PD, every case is different. – For many years Parkinson’s symptoms for Cheryl were mainly physical. This is no longer true. Hallucinations, delusions, mental confusion and memory loss have added to the morass of physical symptoms.
A meditation – serenity and peace comes to me when I can see that Cheryl is safe and unafraid. Most things that occur with PD cannot be changed. It is very hard to accept that fact. It is a degenerative disease. In my manliness I can see, or think I can see, ways to mitigate and ease her mind, life, anxiety and worries. And when I have done that I have removed any small bit of independence that she still has. In Cheryl’s mind oft times her disability does not exist. She has yet to capitulate. A confused mind does not recognize its confusion.
My meds have to be taken EXACTLY on time everyday. Spontaneity is no longer, please help me plan ahead. — This is complicated by the fact that what is eaten either before or after greatly affects the usefulness of the medication. The primary treatment of PD is a combination of carbidopa and levodopa often referred to as Sinemet. PD is a result generally of a dopamine deficiency. Absorption of this chemical occurs in the gut and the presence of other proteins inhibits absorption. So, “Hey. I’m hungry let’s go grab a burger somewhere!” spontaneity is gone from our lives and has been for some time. We often forget that and opt for spontaneity anyway.
That being said, Cheryl greatly enjoys the company of others (friends, siblings, past acquaintances) during dinner or lunch and she easily loses track of time and pills, food and drink get out of sequence. Her body’s reaction to this is twofold; she becomes exhausted (but not always) and she may develop severe indigestion (but not always). She may have either, none or both reactions.
My health comes first. I need to put myself before other’s needs and responsibilities. – but Cheryl is unable to do that easily. it is not part of her personality. It never has been. She is the oldest of six children and as they were growing up, her mom gave her more and more things to do and help with. I tell her often that what we do and where we go is really up to how she feels. She knows that she needs to put herself first but she would rather be with family and friends even when she is feeling not so good.
The other aspect of this is that she may feel perfectly fine until we are somewhere for a bit and she will crash. After she recovers she will become apologetic and worry that she has ruined everyone’s experience.
Anxiety is real. Don’t overwhelm or over plan me. – I have over time gone behind Cheryl’s back, so to speak, and have suggested to organizations that Cheryl is involved it that they find another to perform whatever little task she has been doing for them. She was the go-to person for anything computer related. It was her career for many years. These days it is merely a source of anxiety and confusion for her. It has reduced her anxiety level and in some cases has made me the bad guy.
I am okay with being the bad guy if she sleeps better at night.
Sometimes l am exhausted, especially late afternoon and evening. – This happens most often after she has taken her medication. It seems the meds can overwhelm her body but not always. “Always” would be easier to plan for.
How I feel changes by the hour. I can feel good in the morning and terrible an hour later. I am not the old me who can multitask and go-go-go… – It seems that any sort of multitasking activity is gone from Cheryl’s life. I however like to whine about how many new things I take care of in our life now. Cheryl no longer drives. I am her driver (whiny voice).
Be patient and don’t overwhelm me. – two questions in a row overwhelm. If that happens with me nearby, I will answer for her and slow the conversation so that she can keep up. This can include repetition.
Apathy is real! – And sometimes attention deficit is real also. It is easy for her to start one thing and be distracted by some other thing.
Sometimes l just can’t do a task and need your encouragement. – Like puzzles.
Communicate with me on your concerns and help strategize new ways of doing things. – This is a constant activity in our house. It is easy to use up days thinking about and trying new ways of doing things. It has also taken some time to train the care giver (me).
Help me to eat clean foods and drink lots of water. – Cheryl really does not like vegetables of any different variety that was not fed to her as a child. I do not know if this has any truth to it but there are many things she will not eat or even try. Her idea of lots of water is two or three sips. These are my observations from my experimentation with Hello Fresh meal kits.
As a caregiver it is hard for me to explain how frustrating some of these nuances can be. Resistance of personalization of this disease is very hard to do. I mean this two ways – projecting my feelings, what I think she is feeling, onto Cheryl and dismissing what she tells me that she feels. One of the comments above is that every case is different. This is not unique to PD. Scientific medicine would like the mechanism of disease causation and progression to present as a commonality to all humankind but that simply is not so.
There is a lot of discussion of phases of Parkinson’s disease in medical texts and websites. From my narrow view that is mostly crap. Literally everyone is different. It serves no purpose to relate current symptoms to some list and determine were one is in the dance we all have with death. It is best to look for and act on the feeling good times. There will be plenty of time to consider the feeling bad times after one has passed from this life.
Carpe the Diem!
Almost fifteen years ago this summer is the time that I found out that I was a match to my youngest sister Laura. She had found out earlier in the year that she had Myelodysplastic syndrome. Her body was turning on her. She would die without treatment. Then our whole family was still alive.
Mom and Dad still lived in their home in Madisonville. My elder brother lived in Florida near Orlando with his wife. My younger sister Joyce lived with her spouse in Portland Oregon. Laura and her husband lived in south eastern Indiana and Cheryl and I lived in southwest Ohio in Cincinnati. Now only Joyce and I are still alive.
I think of these things when I donate blood four times each year. I ponder how long I can donate blood. The only answer I get when I search for that information is, as long as you are healthy, you can donate.
This started with Laura but I had donated blood before, just not on a regular basis. When I was in school at the University of Cincinnati in the last millennium an instructor whom many of us liked let slip some personal information about his family. His son had been in an accident and needed blood donations. Several of us went to Hoxworth to donate. I was too young so permission had to be obtained from my parent. Looking back this detail seems odd. I was eighteen at the time.
With Laura’s diagnosis and need for blood stem cells all of us siblings were tested to see if any of us were a match. Only I was a match. I found this out from the nurse who called me as was driving back towards Boston from Cape Cod. We had gone there for a little vacation and to visit with friends. This was convenient for Laura and me as neither of us had to travel far to do this but I had to get home first.
The summer of 2007 was a long one for Laura and me. I cannot speak for Laura because she did not make it out the other side of the treatment process. I am changed forever.
The process takes several days. For me it involved a very thorough physical and several meetings with the medical folks at the end of which I was deemed healthy enough physically and mentally to go through the process. During one meeting with a nurse who also had background as a sociologist, I was made aware of the fact that there was a chance that during the implantation process my stem cells could take over her bone marrow and give rise to my immune system within her body and reject her. Not simply that it might not take and we would have a do over. My immune system would reject her. Seems like a bad thing to happen, to be rejected by your own immune system.
Blood stem cells are removed from the donor in two ways either directly from your hip or by apheresis . In Laura’s case they used apheresis to remove blood stem cells from me and gave them to her after killing off her bone marrow’s ability to produce blood cells. Over a period of several days – my memory tells me four – I was given an injection of some growth hormone that told my body to make way too many blasts (precursors of various blood cells). These leak out into the peripheral circulatory system and can be retrieved by an apheresis machine. It was a miserable four days. Not so much at first but they can give you the injection anywhere and I opted for my arm. I am pretty sure that this started on a Monday so we were ready to do the apheresis on Friday. The had to get the blasts out of me before my body reabsorbed them.
The apheresis process takes a bit of time also. I do not remember talking about the actual process at the beginning. I suspect that if the donors are given all the gruesome details at the start, some will back out. The process was generally described as similar to donating blood except that the stem cells would be removed and the rest of my blood would be given back to me.
In this sketch you can see the general set up. Blood is removed from one arm and the returned processed blood is put into the other arm. Pick your nose, pee and fart before you get started because there is no moving around once the machine is running.
I asked the nurse technician who was monitoring the machine approximately how long it might take and she responded with eight to nine hours for the first session. She said sometimes they do not get enough the first time so they have to do it again to get more stem cells. I intermediately got up to find the men’s room and empty everything out and began to worry about how long my bladder would hold out. In the end it was not a concern. I suspect my kidneys did not understand what was happening so they elected to take a break for a few hours. I helped by not drinking anything of course but there was a bag of saline as a part of the process and some blood thinners to keep my blood from gumming up the pumps. Nine hours is a long time to sit.
Making conversation I asked how many cells they were trying to harvest. Ten to eleven million came the reply. I remember thinking that seems like a lot but I did not have any idea what they might need to do this. I was curious how they would figure out how many they had and she told me they would count them. It is amusing when you think about it. how else would you figure it out. Isolate a certain quantity of serum and under a microscope count the stem cells. Well, huh. Even an engineer can do that.
With all the needles and tubes in the correct position we started. I think the first session was about seven hours or so. There was a clock, one of those battery jobs, hanging on the wall opposite where I was sitting. What a poor place for an ineffective time keeper to hang. After five hours I was certain that it had slowed down. After six hours I was certain it had started running backwards ever so slowly. At the seven hour mark the stem cell bag which I estimated could easily hold a liter had a tiny amount of yellowish life saving liquid in it. The nurse pronounced it good and Cheryl took me home.
Oddly I was incredibly tired. I had not felt this exhausted before. I had not moved all day. But my blood did. It had been in and out of my body about ten times during the day. It was wore out. As I rested in my chair hovering between resting and sleep we got a call from the hospital, I needed to come back again for a second session. How many cells I asked. About four million was the answer. A disappointingly low number, I was certain that they would need two more times. I may have said shit out loud.
On the second day the procedure the was much faster. I spent approximately four hours in the chair with the stopped clock view. Often the donor’s body wakes up and puts more cells out there where the apheresis machine can find them. But that is not really why I am telling this story. There were several times during the next couple of weeks when I was called to go directly to Hoxworth to donate other bloods products to Laura. Platelets mostly as I recall. On a couple occasions I gave Laura platelets. I may have given her red blood cells also but I am unsure of that. She was busy staying alive and I was trying to help. All of these experiences got me used to the activity of donating blood.
I started doing this at the main Hoxworth Blood center near UC Hospital in Clifton and then later discovered that I could do this at another collection center in Blue Ash, Ohio. Once when I was there donating, the nurse technician asked me if I had ever considered giving a double red. After a discussion of what was entailed and other questions, I tried it.
This is Laura’s legacy. Her brother became so comfortable with donating he continues to do it fifteen years later.
I often think about Laura when I am sitting in the chair listening to the apheresis machine do its thing. There is no stupid clock to stare at. I know now how long it takes. It takes thirty to forty minutes. Sometimes it takes longer because the technician is often monitoring other donors. Most often I read a book on my tablet reader. Occasionally I listen to the patter of conversation around me.
Hoxworth is actively soliciting folks who have had SARS CoV2 disease because their blood contains substances that can help those who are recovering from that disease. These folks sit across from where I am donating.
Over the weekend the reward for donating was a free T-shirt. Free t-shirts were the give away today, Easter Monday also. I selected a St. Patrick’s Day themed shirt. It is in the picture.
Laura’s recovery was long and arduous and fraught with disaster. She spent about six weeks in a coma as doctors tried to discover the source of her liver inflammation. Veno-Occlusive disease was the suspected culprit.
Hepatic Veno-Occlusive Disease (VOD) AKA: Sinusoidal Obstruction Syndrome is a well recognized complication and leading cause of mortality in hematopoietic stem cell transplant resulting from severe hepatocellular necrosis and hepatic vascular congestion. — This is from a medical teaching website. Laura and I both read about it in a big white binder that she had gotten at the beginning of her process. I remember her looking at me that first afternoon with her yellowish face telling me that there was about a 3% recovery rate. Pretty crappy odds she said. She was a CPA and the controller of a small successful beverage distributor. She knew about numbers analysis and crappy odds.
It was not that. Eventually the doctors discovered that Laura was having a bad reaction to the antibiotics given to her as a prophylactic to infection while my stem cells were taking over. She did recover but six weeks asleep devastated her body. During a visit at the holidays she told me that my stem cells had populated her bone marrow and was doing fine. A few weeks later she succumbed to pneumonia that could not be treated in the conventional way because of her problems with antibiotics.
Laura died with a part of me in her. Part of me died when she passed out of existence in early 2008. Watching someone whom you worked so hard to save take their last breath is a profoundly life altering experience. I hope to never participate in an experience like that again.