August 8, 2019
Good Morning!
Today looks like it’s gonna be a good day. I’m removed from all tubes. Only thing left is an IV port. My oxygen saturation averages 96. The other day I was able to put on a little make up. I’m feeling better than I have in years.
Today they are discussing the possibility of me being released from the hospital. I’m doing so well the team feels it’ll be safer for me to leave the hospital than stay where there are more germs.
I’ll be staying in a hotel nearby until they do a lung biopsy which will let them know if my body is accepting or rejecting the lungs (or until the resources run out).
This is exciting yet scary. I’ll be on more than 20 different meds during this time. It’s a huge learning curve but I’m ready to face it.
Again, thanks to those of you who are following and helping out. Please feel free to share and continue to donate anything you can. It’s all appreciated and will help towards my healing. I’ve come a long ways but yet so far to go...
August 6, 2019
Good Morning loves;
Just letting you know that I’m getting stronger and stronger everyday. As long as my pain is managed I’ve been able to accomplish more than the physicians expect. They are looking to discharge me soon. It’s a safety risk to be here among all the germs while being able to ambulate.
This is where the financial support is needed most. I will be staying at a nearby hotel For 3 weeks to a month while getting Physical and Occupational Therapy. Then there are 3 to 4+ docs appointments. It’ll be too much stress on my body to drive back here from home so frequently.
Overall, I’m doing as good as I can. A few minor complications such as having diarrhea for a few days and all my counts were off. Everything that went in came back out. (Sorry if you are reading this over breakfast) lol
Well, the x-ray person is waiting to check my lungs which have shown improvements daily! Time to go get more good news!
Again, thanks for your support! I have more videos to add when my son shows me how. I videos on each mile stone. I can’t wait to share.
Please continue to donate what you can and share this fundraiser with others.
You are appreciated. :)
August 3, 2019
Taking the first breath of air after double lung transplant
August 3, 2019
Good Morning! It’s 8am on a Saturday morning in Illinois. I’m excited at my ability take a deep breath. There’s been lots of ups and downs on this rollercoaster but there’s no getting off of this ride.
Two days ago it was suspected that I had A UTI. Confirmed to be a negative. Then it was thought that I had C Diff. It took a day for results. They just told me yesterday that the results are negative. Now we need to figure what’s causing the diarrhea.
Overall I work hard to remain good spirits.
Docs are here to make rounds. I’ll finish up later. Love you all.
August 2, 2019
Good Morning world:
It’s 2:44am Chicago time. I’m wide awake due to some pains near my chest drainage tube. There were 4 all together. Two of them have been removed. Along with 3 tubes coming from my neck that was for blood drawing. Today I was able to walk the Floor a total of 2 times. 1.5 times around the floor twice which is equal to 1200 steps! It’s a small hurdle to a giant but last week the nurses were giving me “high fives” for for making it out the room!
However after the work out I was Completely exhausted! I went To bed at 9pm. It’s explains why I’m bright eyed and bushy tailed at 2pm.
Let’s go over a typical day since I got to the main floor (which hasn’t been long but pretty interesting.
5:30am: respiratory therapy arrives to give me a 10 min breathing treatment. Then 10
Coughs to clear my lungs.
6am: nurse returns to administer morning meds and get me from the bed to the chair.
6:30. The thoracic team arrives. Help set daily goals
6:45: chest X-ray
7-7:30. Breakfast
7:30am: visited by the surgical team, pain management, a psychiatric doc, pulmonary and cardio. Each has a primary focus and they all come in groups individually for discussion. Since this a teaching hospital, they come with many students.
9:30: Respiratory therapy returns for more treatment.
9:45-11am: morning meds are given after the teams return with new information based on the info they got this morning and from the team.
11:30: lunch
12.30: visit with social worker
1pm: occupational therapy helps with bathing and simpler ways to maneuver.
2pm: Physical therapy.
3pm: Respiratory therapy
3:30: more docs more info more meds.
4pm: psychiatric. Visit.
5:30: psych team follow up visit.
There is much more to it. I’m missing things but it’s not easy writing this much on a phone.
It took nearly an hour to write the above!
Have a great day and please keep the donations coming. Its recommended that I stay in a hotel near the hospital for at least a month as my body heals. Also I will have tons of follow up appointments. It’ll make it hard to get back and forth with a healing and hurting body.
Thanks for your support and just having me in your thoughts. Please share my story. It may give someone else hope.
Enjoy your day!
August 1, 2019
It’s now 9:30am. I’ve already been visited by the thoracic team, Respiratory therapy (Twice). I ate breakfast prior to the treatment. I feel it coming back up. Most meds are for anti rejection. One is to make me pass urine. I dealt with Diarrhea all day yesterday. I’m always in pain. I feel crappy as I type.
I often remind myself this is a new pain. That’s worth celebrating. Breathing isn’t my problem anymore and I’m grateful.
The thoracic team is here. Gotta go. Have a wonderful morning. :)
August 1, 2019
I made It through the transplant. Im able to take a deep breath. Prior to this experience I would get upset when someone recommended that I take a deep breath! Since every breath was as deep as it gets. Lol
So there has been a few minor setbacks. The first day I woke Up they added an epidural while I was awake. The hurt tremendously only to tell me 30 minutes later that it was unnecessary due to complications. It was removed within the hour.
It’s been a struggle to get the pain management relief I need to get through this. The pain in my chest has been debilitating. Every big move feels like my body is being ripped in half.
However I remind myself that I CAN take a deep breath to push through it.
As of yesterday morning, I’m out of icu and off all breathing tubes. I’m eating a general diet. I’ve got a corner room on a new floor that’s big and cozy.
Knowing that this will be my “home” for at least 2 weeks, it matters to me. I can Find joy in the little things.
I miss Crucial times updating this site because the truth of my feelings made me cry to much to keep writing. Over the days I’ll be writing and updating you on my progress and pains. Believing that someone is reading means the world to me!
Thanks for reading.
Also, I’m a little sleepy and a nurse is ready to redress my pic line. No time to edit. Forgive the misspelled words please. Lol
Talk to you soon.
July 27, 2019
Lung transplant completed
I was there for her first breath with new lungs.
Lots of pain and recovery will be long. Pain is intense but we are grateful!
July 19, 2019
Happy Friday;
I know It’s been awhile since I have Updated this page. It’s mainly due to a bit of depression I’ve been experiencing. Here are the facts: The lung damage has begin to affect the pressure on the right side of my heart. They are giving me diuretics daily as the fluids have build up around my heart. This is the second trip to ICU in 2 weeks.
My blood pressure has been low. Im unable to stand very long. I can’t walk more than 20 paces. Im working with physical therapy daily in order to use whatever muscles that I can. I sleep more. I’m down to 140 lbs! I haven't been this skinny since high school. Who knew all I had to do was damage my lungs to lose my appetite (lol)
Outside of waiting for the right person to die, I’m doing great. If I live in the moment, I honestly couldn’t ask for much more. I’m in a clean sterile environment with wonderful staff at the push of a button. They bring me food, bathe me and keep me reasonably comfortable. I sleep when I want to and watch tv all day in between treatments. Without the bad lungs and pain, life is pretty good. The only thing expected of me is to heal. My goal is not to let anyone down.
Just came to let y’all know my fight continues.
Thanks for reading.
July 13, 2019
Good Morning;
It’s been awhile since I’ve updated but a lot has happened in that time frame. I’m gonna shorten the story and tell it from my perspective. I was taken off all my heart medications a few weeks ago. After a few days of physical therapy I begin to get weaker. I ended Up spending 5 days in medical ICU. Fluids built up around my heart and lungs. It was painful and very draining. I returned to the regular floor on Wednesday.
I’ve spared so many details because I’m not much of a person to “vent”. I just want to get better. Things were really scary for me. I wasnt Expecting to see an ICU until after the transplant. It was an eye opener to the severity of my condition...
In short, I’m still here! If there is someone whom you haven’t shared this with please do. I’m still in need of assistance.
I give better updates when I feel better. I’ll be back in a day or two.
Again, thanks for your support and uplifting.
July 8, 2019
Good Morning;
(Well, at least it’s morning in Chicago)
The last couple of days have been horrible for me. I noticed I was more tired than normal and blamed it on the medication changes. It got to a point where I couldn’t walk 10 feet from my bed to the bathroom without getting winded. I was sent to the ICU. An echocardiogram confirmed there was a lot of fluids around my heart.
I’m currently in ICU. Due to Scleroderma, I also Have poor veins. I’ve got so many needle marks on my arms from their attempts to find a vein I look like I was trying to shoot myself up with dope without a clue what a vein was! Lol
I been exhausted. I want to apologize to several visitors who came to watch me sleep or cry out in agony. Since my breathing is already the issue they couldn’t offer any of the “good drugs” through my IV which left me suffering pains in my back and rib cage with each cough.
The good news is a PIC line was finally added so they won’t have to stick me for blood drawing as I’m a real difficult “stick” even at my healthiest.
Yesterday was one of the worse days for me this far. I would be lying if I said I didn't consider giving up. Knowing it could be months before I get a transplant is scary. Will I make It? Or is all this suffering in vain.
Maybe this is a bad time for me to be writing on this board. As you can see I’m still in self pity mode. Yesterday I was too tired to text my loved ones back. I didn't Answer any calls. Today I can reach out to strangers. That’s a sign of getting better right?
Not to mention they took my view of Lake Michigan and now I’m looking at a brick wall! :(. Lol
Things could be worse. It is what it is. As long as I can Breathe you will be kept updated. I dont know who is following but I would like to imagine I’m an inspiration to someone somewhere and my ending will be a testimony.
Again, thanks for reading.
July 4, 2019
Happy Independence Day!!!
I smile as I say this because I feel Anything BUT independent at this time. Lol
It’s a beautiful day in Chicago. I have a wonderful view of Lake Michigan. The boaters are out enjoying the weather. Last night I could hear the fireworks at Navy Pier but I couldn’t see them.
Anyone who knows me know I love fireworks. Just the sounds put a smile on my face. I could close my eyes and imagine the colors. However when they started the “grand finale”, I was able to see the reflections through windows of the building! I took that as a sign of hope.
I know I’m wrong for thinking this but lots of accidents take place on this holiday... Maybe this will be my turn. Lol
I believe that my donor is out there living their life to the fullest. They are enjoying everyday giving and receiving love as I am doing while I’m here. Therefore they will have no regrets in the end which is the same outcome I’m working for. Tomorrow isn’t promised to anyone. Whatever my fate shall be, I’m ready for it.
Life has blessed me with some great friends, all those who come for a reason, season or a lifetime. Everyone has added to my growth in some ways.
Again, I just want to thank those who care enough to follow. There are no new updates beside the fact that I’m still alive and still thriving!
July 3, 2019
Today was a better day than yesterday. Things are starting to be a little more routine. Breakfast at 7:30am followed by morning medications. 9am is respiratory therapy with i nebulizer and what I call “Shake up” treatment. I honestly don’t know the name of it. They put me in a vest that is connected to two tubes that fills it with air. It pulsate and squeeze my chest for 15 minutes to loosen any phlegm in my throat. It’s like being covered in bubble wrap with 20 little kids punching you in the chest. (That’s my best description. Sorry). However it’s affective and that’s twice a day.
I get a visit from the surgeon, transplant team, cardiology, Pulmonology, pain management, a social worker, psychologist and a counselor. To say the least I’m too busy to be bored.
Then there’s the visits from family and friends. So, I can say for today at this moment I’m good. Nothing new to report.
What is amazing to me is the out pour of love from places I least expect it. I’m getting heartwarming messages and shows of support from places I never expected. It really makes me feel good. Yes, there are others that I thought would be more supportive but there’s no reason to focus on that. All my energy is focused on what I have and the universe continuously gives me more. I’m loved by so many And the universe is providing me with what I need for the real battle ahead of me. I’m taking all those lessons in order to be Victorious when it’s done.
Again, thanks for your support. Email me if you have questions. PB.LDAMN@GMAIL.COM
July 1, 2019
Today was a rough day for me emotionally. I found myself unable to mentally get out of bed. I felt Stuck. I didn’t want to face another day of the same routine. I miss my home. I never knew when I left home in the ambulance last Monday it would the last time I see my apartment until after surgery. So many things I would have done differently. As of today I’ve spent a total of 40 nights in the hospital this year. I’m not sure how many more I will Have. I cried for the first time since this most recent ordeal and the tears were freeing. Life is uncertain but death is inevitable. This surgery will sustain my life temporary but nothing can “save” any of our lives. We all gotta go eventually.
Even with this being said, I know it’s not my time. There’s something great in store for me from the universe. I was given these circumstances apparently because I can handle them. I just have to take it day by day. I pulled myself up around 2pm and still walked around the hospital twice. I’m trying to be as healthy as I can. It’s gonna take all my strength. I’m not ready but that doesn’t matter. This is happening.
Thanks for following along.
June 27, 2019
I want To say thanks to everyone who has donated thus far. All is appreciated. It’s been 9 days since I’ve been in the hospital. It kind of remind me of what a minimum security prison would feel like with a caring staff and ocean view. Ok, maybe that’s a bad and totally off description. Lol
I’m starting to get a pattern. Breakfast at 7:30 (even tho I don’t wake up until 9). The surgical team comes around 10. I have Nebulizer treatments at 10:30. It takes me an hour to shower. When I’m done lunch is here. I talk to my SW between 1-2pm then Physical therapy from 2-3pm.
Then there are visitors bloodwork and viral sign checks every 4 hours.
When I’m not sulking in self pity, the days are tolerable. I yearn for little things like pbj on white bread. A bowl of grits with butter and sugar (yes! I eat them with sugar) lol
Arguing with my children over petty matters. This experience is teaching me to take nothing for granted. Everyday is different but yet the same.
Until I get a donor, I’ll just be waiting.
Ok, thanks for reading.
June 26, 2019
As of now, I’m still in the hospital. Shocking, huh? Lol
The doctors told me the other day that I will be in here until I get a donor due to my increased need for oxygen. I’m gonna be honest here and admit that I seen this coming and shared it with my family and close friends. I was “cheating” so to speak. I knew I needed a higher flow of oxygen on most days just to get by. I was Using two source of oxygen just to get the needed just to catch my breath. I see now that was probably not the soundest of ideas I’ve come up with. Lol
I wasnt ready to leave my family. I didn’t want to miss out on my granddaughter first year. And lastly I wasnt ready to give up the luxury of all the tv channels available at home. Lol
Ok, now on to the stuff that matters...
The doctor came in to inform me that my LAS (lung allocation score) has went from 57.1 to 90. Which means I’m much higher on the transplant list. It could be any day now. I’m working with PT to keep healthy while waiting for a donor.
I’m gonna cut this short until I get Use to using this system. I wrote more but it’s lost somewhere. I’m not as PC savvy as I use To be. Sorry.
Again, thank you all for your support. I’ll try to update every other day (if not daily since my main job is to stay reasonably healthy and wait for the transplant). I hope You all have a wonderful day.
June 24, 2019
As of today, I was informed that I’ll be staying in the hospital longer than expected as my oxygen requirements have doubled. I’m on up to 10L of Oxygen at rest. They are taking me off some of my heart meds as an attempt to bring up my low blood pressure.
It was a shock to the soul knowing that I may not be returning to my home until after the transplant. They are treating me well in the hospital but there’s no place like home. I’m walking with physical therapy twice daily in order to be as healthy as I can for the surgery. I’m getting to know the staff really well on this wing of the hospital. One of the few places I expected to become a familiar face. (Lol)
I’m taking it one day at a time and keeping my spirits up. Thank you for following my journey.
