Carly’s journey continues…

Carly has done remarkably well since waking from her medically induced coma.  She had terrible confusion and panic when she first woke up and it caused us much concern, however, she is tough and worked through the confusion and has regained much that she lost.

Although she has suffered some cognitive loss and muscle loss from the prolonged inactive state, she is working diligently to correct these issues and to get back to where she needs to be.  She still has quite a lot of pain, but she is trying to handle that as best as she can.

Her wound in her midsection takes my breath away each time the wound care nurse changes her wound-vac dressing.  She has such a large hole in her middle that I worry about it ever being able to close.  The nurse just laughs at my concern and tells me that Carly will heal up quite well and really fast.

We are anticipating her movement from the floor at Baylor Hospital across the street to the in-patient rehabilitation center where she can work non-stop on regaining her coordination and her cognition.  She is determined to get to the functioning she had before she became sick at all.  She is my hero.  I cannot imagine going through all she has gone through and still being upbeat and determined like she is.

She had her head shaved again because her hair gets matted quite badly when she is in the hospital and she is not allowed to shower or wash her hair.  She looks really cute without hair, but now she complains that her head is cold!

They have removed all but one line from her body–the foley catheter, the CRT dialysis catheter, the ART line, and the central line.  All she has left is a midline IV in her upper right arm and we hope that goes really soon.  Her lab numbers are all good which implies that both her liver and kidney are recovering and she has no infection!  Yea!!!

I do worry though about her immuno-compromised status when she gets to go out into the world again.  She will have to be extremely careful around anyone who exhibits any signs or symptoms of illness.

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Carly’s continued journey back into health

 Here’s the latest update on my daughter, Carly. She has endured three separate surgeries in the last 5 days. First to find the infection and the second two to “wash out” her abdominal cavity. All were successful as the cultures taken from the washes are negative. That’s the good news.
 
 She remained in a medically induced coma from last Sunday until yesterday, Friday. At that time they were able to pull her breathing tube successfully. Her vital signs remain stable and she is breathing totally on her own. Another bit of good news.
 


Today when rounding, Dr. Anthony explained that her liver numbers were becoming elevated which usually precedes rejection. They had to lower her anti rejection medication way down this week due to her condition. So, today they will hang steroid medication IV to deal with the issue.
 
 The real problem here is that her new kidney has been affected and has almost shut down. She is back on continuous dialysis to try to rest the kidney. All the doctors assure me they believe this kidney will kick back in soon.
 
 Carly is in quite a lot of pain which I had to fight the nursing night shift to get addressed. Now she is resting I am very disappointed in Baylor Hospital’s night shift in 4Roberts ICU. I complained to the nurse practitioner and again to the transplant surgeon this morning.
 
 This journey continues slowly and with many setbacks, but I am positive Carly will get through it and thrive.

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We are getting tired of repeating things…

Well, Carly has been back in the hospital all this week. I felt bad because I had to be in Tulsa for my own doctor appointments Tuesday and Wednesday.

On Tuesday, she had a colonoscopy where Dr. Patel took tissue samples from areas of inflammation that are new. I finally got to OKC on Wednesday.

Today, they took her back for a Sigmoidoscopy to collect more tissue samples. The first ones were not useable. So, we are not the “happiest” campers around today.

Carly just out of her procedure.

We are hoping to get her back home tomorrow if all goes well.

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A guest post from my daughter!

My daughter is also a blogger and a very good writer.  I asked her to provide me with a post from her point of view since I blog about her and her illness all the time.  I hope this will give you, my readers, a look into the mind of chronic illness via Carly.  She really is an inspiration to me and to all of her friends and family.  So I hope you enjoy the post.

She is so “done” with all this!

When you suffer from chronic illness it’s very difficult to remain positive all the time. Now, I’m not saying you’re not allowed to have a “sad day” but as long as you keep those days to a minimum you can survive. The best defense is surrounding yourself with things that make you happy. As someone who has been suffering from chronic illness for the last two years and will continue to suffer in the future here are the five things I find most useful to maintaining my sanity. 

 

  1. Gratitude List – Have you heard the expression “every day may not be a good day but every day has something good in it?”  This is 100% true. When I’m struggling to find the good in a day I find it’s best to write down five things or more that I’m grateful for on that day. I try not to repeat the same things over and over on each list (i.e. Glad to be alive, thankful for my family, life-saving medicine, etc.). Instead, I try to focus on the little things that make that day bearable. The majority of the things on my list are insignificant to most but of major importance to me. And that’s OK. Remember this is for your sanity not for anyone else’s reading pleasure.  It can be anything from finding a quarter in the couch cushions to receiving an online coupon for something I’ve been meaning to buy and had forgotten about. Some days I’m just grateful to get out of the house without being covered in dog fur. No event, task, found object or shining light is too small to make it on your list.***BONUS POINTS*** I started writing them down on paper, studying them and then folding them up and putting them in a mason jar on top of my mantle. That way, when I’m having a bad day, and I can’t think of anything to be grateful for, I can pick one out and read it and remember a good day  from the near past. Remember, it really is the little things.
  2. Mix Tape / Movie Bundle – if your illness is anything like mine you’re going to spend a lot of time hanging out in places you’d rather not be. And most the time you’ll be all alone or at least partially left to your own devices. My many, many, many ER visits spring to mind. I think I’ve spent about a year waiting in doctors offices, ERs, labs and various testing facilities. I figured out the best way to pass the time without going insane and going off on the nurses, doctors and techs, (who’s fault it isn’t in any way,) is to be prepared for the wait. My personal choice was to download several movies that I can watch over and over and never get bored with it. The marvelous thing about technology is it gives us several different options for passing the time. The other thing I do for the many test that they run in the hospital and the various unpleasant procedures I have to go through is a decent amount of really good music that makes me happy. Not necessarily happy music, but music that instantly transports me to a happy time in my life. I generally have three playlists at all times loaded and ready to play. I have a nostalgic 90s grunge/alternative list to remind me of my misfit youth. I have my relaxation go to’s like Bob Marley, Enya and The Shins. This playlist comes in very handy when I am put in a very claustrophobic situation such as an MRI or other death trap of a scan machine. And finally I have the upbeat, dance like no one’s watching list. This one is pretty typical. It’s my Beyoncé, Outkast, Gaga, 90s hip-hop, Jennifer Lopez (Jenny from the block-era) shake your booty list. This list is strictly for getting me through the day. These are great for hospital stays. You know what I’m talking about…Those days when you’re waiting hours upon hours for the doctor to grace you with his presence?  Yeah, those days. Works like a charm.
  3. Journal/calendar – you are going to deluged with information. Writing it down is a whole lot easier than trying to remember everything you learn every day. I personally keep a calendar and a journal so that I can keep track of different things in different books. My calendar I use to register doctors appointments, lab appointments, test appointments, etc.  I also keep all my daily body measurements that I have to take due to my illness. This comes in handy when you have conversations with your doctors once a month. That way they have all the information that you have and you know that it’s correct. My journal is used to keep track of goals I set, questions I have for my healthcare workers, things I need to accomplish in order to keep myself well. I also record things that I feel need to be brought to someone’s attention. Generally this is a bad practice or some mixup that could’ve resulted in something bad. Trust me, in a hospital this happens all the time.  I know this sounds a little bit ridiculous or micromanaged but when you have a chronic illness you have to keep track of so many things, so much information, that your brain gets full and you can’t hold it all.  I absolutely could not do all this work for my health if I didn’t have these things.
  4. Video chat – You’ll end up spending a lot of time in your house.  The hardest part about dealing with chronic illness, the thing for me that causes the most depression to set in, is that others lives go on. Your friends and family go to work, take care of their kids, go to parties, and basically continue their life as normal. You can’t take that personal. It’s not that they don’t want to see you or spend time with you. It is that they are healthy and continue to live their lives the way that they have been. Your life is the one that has to change. And that is totally OK. Once you realize that, you are over the biggest hurdle. This is where video chat comes in. It’s nice to see people face-to-face in person but that’s not always possible. And it’s nice to talk to people on the phone or through text or email or social media but that doesn’t give you the satisfaction of knowing that they are there for you, really.  If you’re like me, sometimes I just have to see their face. It makes it a connection better than any of the other forms of communication. If you have a smart phone you can download video chat apps like Google hang out, FaceTime if you have an iPhone, or Skype. They are free and your friends and family can talk to you face-to-face anytime. Skype and Google hang out are also available on PC if you have a webcam. 
  5. Silly/goofy things – things are going to be pretty serious most of the time. I found that having things around me that make me just giggle often breaks up the monotony of the bad days. Doesn’t have to be anything big. As a matter fact, most of mine cost less than a dollar and don’t make any sense to anyone but me. Whether it’s a T-shirt that makes you laugh, or a poster of something that makes you think of better times, or perhaps something as simple as a sheet of stickers with google eyes; it is necessary to surround yourself with some kind of goofiness. I have many things like this. Some were given to me in order to cheer me up. Some were found in the oddest places. And some I actively went out in search of. Put them around your house, car or office if you’re still able to work and enjoy the joy that they provide. 

Chronic illness can be a real bummer but it is survivable. All of these easy steps will help you accomplish just that. In a world that suddenly became very serious, make sure you have time to nurture the good and fun side too. It’s the only way to keep from going mad. So put your bobble heads on the dashboard, listen to your Weird Al, wear your goofy hat and remember that you’re alive. 

C. R. Williams

 

C. R. Williams is an avid blogger who covers many topics including her struggles with chronic illness and recovery.

Endeavoringtosucceed Blog

 

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Nothing new, nothing has changed…

I was so hopeful that with the advent of a new year, things would begin to change for my daughter.  That hope was for naught, it appears.  Nothing has changed.  All we get is more of the same.  Nothing new is good, but nothing changed is frustrating.

Carly has gone back to doing clinic dialysis.  She like the clinic, she likes the staff, she feels they have her best interests in mind.  She is still not getting much in the way of care from her nephrologist, as a matter of fact, he seems to refuse to talk with her, choosing to have is nurse, David, act as go between.  He has not given her any referral to see a new nephrologist, as he agreed to do prior to putting her in the hospital the day before Christmas for something that could have waited until after the holiday.

Every day there is some new frustration she has to deal with.  Yesterday, she had a bleed and we spent the morning at the ER because her hepatologist sent her.  Luckily for her, she was in better shape than they thought and she was sent home.  She felt so happy that she did not get admitted, again!  We told the ER doctor that we thought he had just given us a really nice present and he agreed.

Today another problem to be dealt with.  She take a prescription that is to prevent hepatic encephalopathy, which is a common occurrence for liver failure patients.  It happens when her blood gets a big build-up of toxins due to ineffective treatment by her liver and the symptoms are pretty scary.  She will begin to fall all the time, she will run into walls, she becomes confused and anxious, and she loses touch with reality if it gets bad enough.  That said, she went to get the refill and the pharmacy said her insurance had denied payment and her cost would be $600!  That is for one month.

So she calls her insurance provider, and after many minutes on hold, speaks to a very nice lady who says her policy has been cancelled and she cannot find out why.  So we wait while she investigates.  The lady comes back online and says “someone mistakenly cancelled your policy” and she would get busy re-instating it.  In the meantime, Carly is without her medicine now for two days.  We are hopeful that by the end of dialysis today this will all be cleared up and we can go pick up her prescription for only $300.

It is just always something and Carly doesn’t always have the stamina or the energy to deal with things.  It is ridiculous that the patient is the one who has to monitor and manage her own care because no one else cares or is willing to do it.  She needs someone to be driving this bus of hers called End Stage Liver Disease and ESRD.  She has doctors who each monitor their own system or wheel of the bus, but no one is coordinating and communicating between the different doctors.  This is my main frustration as a nurse and the patient’s mother.  I would do it, but HIPPA prevents me from access since I am not a caregiver.

Anyway, even though nothing has changed,  we are expecting 2017 to be the year she gets her transplants and we are hoping for some action soon.

We remain hopeful despite frustrations!

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It’s a New Year…and better, I hope!

Since last I posted, lots has happened.  First, let me wish everyone a Happy New Year.

Carly’s Christmas Eve 2016

Carly ended up in ICU right before Christmas.  They put her on continuous dialysis to try to pull off all the excess fluid that had built up since her hospitalization at Thanksgiving.  However, both of these experiences have turned out to be total wastes of time, because her nephrologist, Dr. Thompson, was not able to be involved in either hospitalization due to his own health issues.  It seems that his partners either do not follow his directions about his patients, or they disagree with him and do what they want instead.  The end result being that after two inpatient stays, she is worse off than she started.

Her nurse working on the dialysis machine in ICU

Carly was devastated that she missed both Thanksgiving and Christmas this year, even though we celebrated later when she came home.  That isn’t the point as far as she is concerned.  I have to agree with her this time, though.  Both times turned out to be fiascos all around and she came out of the hospital worse than when she went in.

Christmas Day 2016

On a personal note, my right wrist is still a work in progress.  I am going to physical therapy twice a week with only minor relief.  This last time, the woman who did my treatment worked on the inside of my wrist more than the outside and it seems to have helped quite a bit.  I am able to finally sleep without being awakened by pain, so I am not complaining.  If only I knew what I did to create this problem so I could avoid a repeat in the future.

We are still trying to decide if home dialysis is over or if we will go back to it.   Carly is going to the clinic for now, but she really hates it.  When she met with her nephrologist this last time, she and he decided to part company.  He will be referring her to another doctor and he will make sure the new doctor is well versed in her health issues and all the care that she has already gone through.  Our issue, however, is whether the new doctor will be able to authorize home dialysis.  We just found out that Fresenius only contracts with Dr. Thompson’s practice for home dialysis and if we leave that practice we are not sure where we will end up for dialysis.  This illness is like this.  Fix one problem and you find 10 new issues to deal with!

When we finally got to celebrate Christmas, we had a good time.  John was really funny opening up his present.  He was really trying to be jolly and create a fun atmosphere for Carly.

 

 

 

 

 

The only thing Carly wanted to do for Christmas this year was to rescue another dog.  So we went to the Petco up in Edmond last Sunday and got Dollie!  She is a sweet baby and the other dogs have taken to her quite well.  There are a few bad habits due to having come from a hoarding situation, but nothing that can’t be dealt with.  She is housebroken and a love puppy!

Dollie, Pepe, and Lily just chillin’ with Carly

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It’s almost Christmas!

My tree at my house

Sorry for the long pause between posts.  It’s almost Christmas and there has been lots of activity at this household.  Carly continues to spiral up and down healthwise.  She had another bout with low potassium but that is correcting slowly.

Carly being silly at Target

She met with her Nephrologist, Dr. Thompson and they had a long and unpleasant conversation about how she feels her care is going.  The bottom line is that he gave her his cell phone number so she can ALWAYS reach him (problem #3).  He also wants to add another nephrologist to her care so that there is another doctor in his practice that knows her condition and is involved with her care when he is out of pocket.  He recommends one of his partner’s wife who works part-time at the practice.  She is extremely experienced with multi-system failure and worked in critical care for a while. (problem #1).  He also is doing some research about how to prevent this potassium see-saw in the future.  She may simply have to go back to clinic for dialysis because there they use the proper potassium bath in her treatments. (problem #2).  Carly is not exactly happy with all this but is willing to do whatever she needs to do to stay alive.

 

My silly wrist splint

On a personal note, I have somehow managed to sustain an injury to my right wrist and have been dealing with pain and swelling for the last 4 1/2 months.  Been to see 4 different doctors, none of whom seem to know what the deal is.  Now I am going to physical therapy in Tulsla which means I drive back and forth many more times than normal.  I am exhausted and in pain because nothing anyone has done is helping.  I just love driving 2 hours either way several times a week.

Carly’s tree

I think we are all almost done and ready for Christmas.  I have just a few items left to get and that will be easily done at the Family Dollar store.  All I can say is I am ready for this holiday madness to be done!

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Isn’t it amazing?

Isn’t it amazing that we have performed home dialysis for the last 3 days now and we have almost got Carly down to her dry weight.  A week in the hospital with daily dialysis in the Acute Unit was unable to do this, but neither of us can figure out why.  I know it is probably because their protocol does not allow them to pull fluid from someone with low blood pressure; that is usually the problem.  However, I know that she runs low most of the time and her doctor has approved pulling when her systolic pressure is in the 90’s.  I just don’t freak out and keep checking her pressure when it gets low.  I don’t stop pulling unless her pressure does not bounce back up after two or three checks.

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On Saturday, we did finally have our Thanksgiving meal, thanks to John’s effort.  While I was busy getting Carly’s dialysis done, John went into the kitchen and fixed the entire meal!  I have never eaten a Thanksgiving meal that was totally prepared by a man, but I must say it was delicious.  He is such a sweet and thoughtful man. He even left the kitchen basically clean!

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I got to drive home to Tulsa on Sunday.  I was so happy to see my own bed!  The first thing I did was lay down and take a 2 hour nap.  I don’t think I have talked much about my health or issues here, but while all this has been going on with Carly, I seem to have injured my right wrist.  I had an arthroscopy and MRI done on the Wednesday before the holiday to see if the orthopedic doctor’s diagnosis is correct.  He says I have somehow torn my TFCC (big words for padding in wrist) and he will fix it once he sees these results.  In the meantime, I have a swollen right wrist that hurts 24 hours a day.  Nothing really helps the pain, so I try to ignore it.  In addition to this injury, I have had the mother of all colds for over a week now and I am really sick and tired of being sick and tired!

Carly is getting really depressed because she does not see any light at the end of this tunnel; Hell, she doesn’t even see the end of the tunnel.  She is getting frightened that she is going to die before she can convince anyone to help her.  I have no soothing words to tell her.  She has every right to feel this way.  She has every right to believe that this will go on indefinitely and she might die before she can get a transplant.  I feel so helpless to help her.  I keep trying to focus her on the here and now and have her enjoy her life now as much as she can.  The problem with that is she is so sick it is difficult for her to enjoy much.

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I am really afraid.  All I can do is keep Carly moving in the right direction and try to keep her spirits up.  I really am angry at the way this transplant program works.  She is left hanging in the wind by the very people she expects to help her.  It also doesn’t help that the holidays are upon us.  I think I have my work cut out for me for the next few months.

If you are reading this post, please pray that my daughter gets her transplant very soon.  Any and all prayers for her are appreciated.

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We are back to square one, it seems!

Carly in her GAME face

Carly in her GAME face

Today is Black Friday and the day after Thanksgiving.  Carly was released from the hospital after a full week inpatient on Wednesday night at 7:30PM.  She came home and fell into her bed exhausted.  It seems she still doesn’t feel any better and they were unable to pull enough fluid off so she is still over her dry weight.  They did give her blood, which usually makes her sick to her stomach and she still needs to pull off 4 kilos of fluid to make her dry weight.  When they would try to pull it, her blood pressure would tank and they would have to stop.  So it seems we are all back to square one again!

Carly views all of this as a big set-back and is really trying not to give up.  I keep telling her that her illness is going to ebb and flow and her health will change accordingly.  She is not going backwards, but it seems she feels she is.  Another problem was that no one besides me came to see her in the hospital at all.  John went to Kentucky to see his ailing parents.  All of her friends had the CRUD and would not bring it to her.  In her rational mind I know she understands all this, but emotionally she feels bereft and alone.  She feels like everyone and everything is moving onward, except her.   I keep pointing out that she is not alone and that she is moving toward her goal, but it seems that is not enough to bring her out of her funk.

Yesterday, for Thanksgiving, Carly got Jack in the Box for lunch and Ramen noodles for dinner.  We neither one had the energy to do anything else.  Today, we are back to our old pattern of dialysis here at home.  We had to do the setup using bags of dialysate since we have to drain the old SAK so we can make a new PAK then make a new SAK.  No one told us how much energy we would be expending just to do home dialysis.  It seems that we were ill prepared for the amount of heavy lifting and hard work moving boxes that would be required.

So here we are once again, doing dialysis in her bedroom and feeling like this waiting may never end.

 

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She’s back in the hospital again!

Well,  after spending all of Thursday day and all of Thursday night/Friday morning in the ER, Carly was finally admitted back in the hospital early Friday morning.  She was not amused.  They don’t feed you in the ER, they don’t give you any of your regular medications.  She didn’t even have a bed until 1:30 in the morning.

She is so "done" with all this!

She is so “done” with all this!

She was finally moved to a room after 9am, once there, she was wisked off to dialysis to try to pull some of the excess fluid off her.  She did not enjoy the treatment because they had to set the machine to be fairly aggressive to get the fluid off.

Once through in dialysis, she went back to her room on the 7th floor and we tried to get all her medication given so she would get back on her schedule.  Her nurse was really great and the CNA is someone Carly knows well from previous admissions and likes very much.

John came up after work and sat with us for a while, but then Carly said she was tired and wanted to go to sleep, so I left also.

This is not how we want to spend the holidays, so I hope they get things fixed rapidly and discharge her Monday.  She needs to be home for Thanksgiving and not in the hospital.  Her doctor doesn’t want her leaving until her hemoglobin stabilizes and she has lost the 10 kilos of excess fluid on her.  That said, who knows when she will get to come home?

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