September 8, 2024
My last update was on August 2nd. Many different things had transpired since then. My worst night was on August 7th. Not only was I dealing with severe constipation, I received an email from a good friend that his daughter had been put in hospice. All medical treatments had been exhausted to help her. This beautiful girl was a former student of mine with multiple disabilities. After she graduated, we would hang out either at my house or hers. We would do crafts, make pizzas to eat, exercise, and/or talk about the days we had in physical education class back in the day. I also had videos of the all of the students in her class doing a variety of group and individual skills. She passed one day later.
On August 15th, I was excited to hear from my team that I could be discharged to go home. It was my birthday weekend. I would be home, two of my three boys would be home, and my parents to celebrate my discharge and my birthday. It felt great to sleep in my own bed! I, however, woke up with a headache that progressed during the day into a migraine times 2! I called the nurse on call and with her recommendation, my mom drove me to UW Hospital emergency room. I was given all sorts of medicine and was released at 5 in the morning to go home. No sooner did we leave the hospital and I started throwing up. I got home, sat on the couch to rest, and drank a little water to help with my dehydration. The water did not stay down. I was feeling awful so another call to the nurse on call sent me back to the emergency department. It was a long day of being nauseous and very uncomfortable in a tiny room in the E.D. At some point in the evening, I was admitted to the hospital. I was extremely dehydrated and nauseous with the headache still lingering. To make matters worse, the nursing staff gave me lasix (the pill that makes you pee). This medication was on the discontinued list, but they gave it to me anyway. This led to havoc on my kidneys which led to 4 more days in the hospital.
I am happy to say, I came home on the 23rd of August and have been home ever since. On the 23rd, my oldest son, Casey, flew home from Florida and my middle son, Braden, came home from Madison. My youngest, Declan, is still at home while working on an apprenticeship. So, all 5 of us were home for the first time for a very long time.
I went on my first trip to my parents lake house near Minocqua over Labor Day weekend. It was a wonderful time with family. Breathing fresh air, taking pontoon boat rides, taking my dog to the small dog park in town, and challenging myself with walks (without oxygen) up some hills that I needed 10L of oxygen in the past.
I have had weekly check ups with my team including a 6 minute walk, medication checks, spirometry testing, blood work, and finally a meeting with the doctor and my coordinator. Everything has checked out so far.
I cannot drive yet so I rely on my parents or Steve for transportation back and forth to Madison. Tomorrow, 9/9, will be my second time driving there for an appointment, a stay in a hotel, and a 7 a.m. appointment for a follow up infusion (the 5.5 hour one). The bills are adding up, but I feel fortunate to be able to see my son, and my brother and his wife (at times) while I am there. Steve's Aunt lives in Madison too so we see her from time to time as well. The ultimate best is getting a good bill of health and am able to come home! I continue to be in awe about being able to breathe so well! It is truly amazing!!
August 2, 2024
Hi Everyone! I am sorry for the update delay. A lot has happened since July 11th. I had a bronchoscopy done to eliminate fluid from my lungs, but during that I aspirated some of the fluid. Then my bloodwork showed signs of rejection. This started a series of IV antibiotics and some really rough days. Honestly, this is the first day that I am able to type more than a few words on the computer. I am still in the hospital and am projected to be in the hospital until at least August 14th. The reason for this is that the Lung Team has and will continue to give me 3 different infusions to combat the rejection until then. The infusions are three fold. One is a blood transfusion to boost my plasma with "B" cells, the second one is basically a strong medication to help my immune system, the 3rd one is actually a drug used to fight cancer,, but has been found to help fight the rejection that I am going through.
On a good note, my breathing has greatly improved! I have slept on room air (no oxygen) for the past 4 nights. As the day progresses, I can be sitting, eating, and talking without any additional oxygen. I look forward to my exercise sessions with PT, OT, Cardiac Rehab, and my several walks each day. There is an outdoor healing garden that Steve and I go to. I get sunshine, fresh air, and outside walks. I'm getting my strength back little by little each day! Yesterday, I did step ups and dips (touching my toe to the ground while one foot on the step) which woke up my quads, hips, hamstrings, etc. It was amazing!! Yesterday, my doctor said my lungs sounded clearer!
My days continue to be filled with different people popping in at random times anywhere between 6 a.m. until 5ish. Thank goodness for the Olympics! Steve and I have been watching that during some of my treatments and between nurses, doctors, and whatnot that pop into the room. They sure have been exciting!!!
Week before last, I had 1/2 of my staples removed. I think I get the rest of my staples and my chest tube stitches out next week.
The little things that bring me out of this world joy are being able to go outside (there is a healing garden Steve and I go to), getting my hair washed with my shampoo rather than the hospital shower cap shampoo, which is more like wax, being able to take a "real" shower ( I can only do that from the waste down) rather than a sponge bath. I actually just graduated to the bottom body shower TODAY (after almost 1 month in the hospital), being able to step up on a stool, going anywhere out of the room, even if it is to get a CT (I call these field trips), and finally graduating to walk to the bathroom by myself, take care of business, and wash all by myself, and little pop-ins from nurses I have not seen in a while. I could list so much more, but the bottom line is that I am doing well and I am happy! Oh, and I am walking on 4L of oxygen when I do my hallway walks! Remember I came in needing 10L. The team, Steve, and I are blown away.
Steve and I continue to be positive and have 100% trust and faith in the Lung Team!!
side note: I started typing this early this morning and now it is 5:00 p.m., but I got it done!
July 11, 2024
Hello Everyone!! It has been a while from my last post. I was offered a set of lungs on the morning of July 3rd (around 12:15). We drove to UW Hospital Madison and were admitted around 10 a.m. My new lungs took just under 12 hours to be put in from start to finish. I have seen so much improvement! I started with several tubes connected to my body. I had 1 breathing tube, 1 feeding tube, 4 chest tubes, 1 neck line with several ports, several IV's off each arm, and catheter. My progress went really well! As the days went, tubes were quickly coming out of my body and I could talk, pee, eat, and walk on my own. It is truly an amazing process! The team here at UW are fantastic. All departments work together and deliver a comprehensive plan. One of the nebulizers caused some wicked hallucinations, it was CRAZY!!! Each day begins at 4:00 a.m. with xray, 6 a.m. vitals, weight, and up for the day. 7 a.m. shift change, pain management, and meds. 8 a.m. breathing treatments and the beginning of rounds. then the day continues with visits from pharmacy, my coordinator, learning center, psych, nurses, social work, PT, OT, speech therapy (swallow study), respiratory, and various other staff that need to see us. So, my days are full! I enjoy the walks the best!! Todays highlight is a "real" shower!! BUT, the best of all is that it is July 11th, which is mine and Steve's Anniversary #26! 31 years of love together!! He is THE BEST! And my ROCK!!
July 4, 2024
On July 3rd we got "the call". We are at UW Madison Hospital. We came yesterday at 10 a.m. to get ready for surgery on July 4th. It was supposed to be at 5 this morning, but it has been delayed twice. So latest We hear is 12:30 p.m. We are excited, filled anticipation, hopeful, feel sadness for the donar's family, grateful, and staying positive.
June 30, 2024
It is the last day in June and we are still waiting for "the call". We are, of course, filled with anticipation and excitement! Each time the phone rings, we are wondering if this is "the call".
On Friday it was a surprise to me that I was getting a new home concentrator. My new one has the ability to go up to 10L, instead of just 5L. This is huge because this offers me more freedom to do more around the house! For example, I can now go upstairs during the day if I forgot something and not get so exhausted. It's the little things that we take for granted that mean so much!
I appreciate all of you that read my updates and leave messages. I read and reread each one with gratitude!
June 25, 2024
Today was a GREAT day! During my check up visit with my transplant doctor, I was taken off of the "hold" for getting a transplant! Steve and I are filled with joy and more hope. I will not need to finish the neurological testing (EEG) because the MRI, EMG, and physical assessment had good results! Kudos to my team for being cautious with the symptoms that I had. I was a pretty down being put on hold, but it was for the best. Today, I will repack my bags, put them back in the van, and wait for the call.
June 17, 2024
It is June 17th. It is 94 degrees out! The heat and humidity makes being outside difficult for most people. For me it feels like I'm suffocating, even with 10L of oxygen. It will be indoor exercise for me today! I added a new picture today of me and my dad wearing our transplant shirts. My dad will be a 6 year survivor this August, transplanted at 75 years old! I'm still on "hold", but hopeful for appointments with neurology soon. Always stay positive and and enjoy life even when it feels like the end!
June 15, 2024
The weather has been wonderful for walks outside. Today Steve and I took Honor to the dog park. I did well, even on the trails. I have 2 tests for the neurology scheduled, one next week and one on July 2nd. This is good news. I feel like we are moving forward! Happy Father's Day to all of the Dad's out there. I thought I would have been done with surgery by now, so I prepared Steve's gift ahead of time. I am also blessed to share this weekend with my dad!
June 12, 2024
I'm sad to tell all of you that I have had a set back. Last Friday, my team wanted me to get checked out at UW Hospital because I was having tingling in my hands and feet, had some dizziness, and a difficult time focusing. They were concerned about me potentially having something going on in my neurological system. Steve and I spent the day in the ED. I got an MRI, which did not present any abnormalities, but needed a physical neurological test to verify that was ok. We finally got in a room, a resident came in, then the lead ED nurse. She presented herself as a neurologist and discharged me as "safe to go". This was great news until Saturday morning when I got a call from my coordinator I was put on hold for transplant. What this basically means is that UW Hospital will not be accepting lungs for me until I have a physical neurological exam. The basic one given in the ED was not enough. My team has worked extremely hard to get me in for an exam at both Madison and Froedtert, finding the earliest appointment to be in September! That wont work so the team worked all day Monday, Tuesday, and today to get the appointment earlier. It is now scheduled for July 22nd, but put on a priority wait list. Hopefully I can get in for testing earlier. The testing is vital to show that I am without any neurological issues that need to be addressed before transplant. This is important because some of the medications after transplant could have side effects of neurological symptoms. If I am cleared now, but show symptoms after transplant they better know how to address that. If it should get to a point that I cannot wait any longer for a transplant, they would transplant me. This is tough news to swallow, but is for a safe transplant. I am happy to have the lung team being so sensitive! I am thankful for having 10 tanks a week to continue exercising and do short errand runs if needed.
June 9, 2024
Today has been a pretty good day! My huge accomplishment was going for a 1.25 mile walk at an aerobic pace!! Thanks to having my oxygen on 10L, I walked at the fastest pace in over 3 years! I was also able to walk and carry on a conversation with Steve, without compromising my oxygen saturation as much. My parents are at my house helping to run Declan's graduation party. I will not be physically present due to the risk being exposed to germs that could potentially impact my health and my opportunity to move forward with transplant. I got as much food and other items to assist in serving food. I did not want to put all of that burden on my mom and dad. I am positive that everything will go well!!! Steve, of course, will be here too. I did have fun preparing Declan's memory boards and setting them up for everyone to see. They turned super cool, if I say so myself!!! I am looking forward to another great walk tomorrow and days to come.
June 6, 2024
I am home again. I was able to come home on Tuesday, June 6th after all of my oxygen needs were set in place. That wasn't as easy as it may seem! The respiratory team at UW Hospital made 7 phone calls to the medical supply place that I have been using since I was diagnosed. In order for me to go home, I needed tanks that I could use to be mobile outside of my house, most importantly to exercise. The team said they would fax the order and needed the oxygen to be delivered on Wednesday. The company said that incoming faxes can take 24-48 hours, then there is a "process" (calling insurance) so at the earliest, the oxygen could be delivered on Thursday or Friday. With that said, I would still be at the hospital. Steve said that he would go to the company, hand deliver the orders, and get the tanks. This was fine with the team because I did have one backup non portable tank. If the order could not be filled, I would be confined to the house without being to exercise. On a side note, exercise is particularly important before and after transplant to keep my strength up for my body to be able to recover from the transplant. Exercise before transplant will make recovery easier after transplant. Not a problem for me, I like to exercise. Back to oxygen company.... I called the oxygen company on Wednesday morning to let them know that Steve had the hard copy of the orders and would like to pick the tanks up. I was told that he could drop off the orders, but might not get the tanks until Thursday because there is a "process" ( someone read the orders and call insurance). I was not happy to hear that. She passed me on to the oxygen "supply" area to get the same message. That wasn't working for me so they kindly passed me on to another person. I got the same answer, but wasn't satisfied. She finally told me that I could email her the orders, she would send them to the supplier to process, and would call me when the tanks would be ready later that day. What??? All it took was an email?!?!!! The Hospital could have done that!! So The email was sent and within an hour, Steve was able to pick up 4 tanks. These are the kind of hoops that I know will be ongoing, because my mom does this on a DAILY basis for my dad, also a double lung transplant one month before I was diagnosed (not the same disease). After 17 years of battling insurance with my mental health illness, I have come up with a few tricks to skirt the system. I have generously passed these on to anyone that I hear is struggling with insurance and having a hard time getting medical supplies. Gladly, I am happy to say it has helped many!
After 5 days in the hospital, my condition did worsen and have now jumped to over the 75th percentile in the nation for lung disbursement. This means that UW Hospital will be offered lungs before many other transplant centers in the midwest. I am happy to be home, but hope the call comes soon! I am very exhausted, it's harder to breathe, and have to rely on friends and family to do simple things around the house. My dog, Honor, has not been neglected. My good friend brings her dog over 3-4 times a week to run and play in my back yard. Steve gets her running as well. Today I plan on going for a walk with her and my son (someone has to be with me ). At the 10L of oxygen, each tank will only last about 40 minutes, compared to an entire day at 4L. I'm very excited!!
June 2, 2024
On May 31st, I headed back to Madison but not for transplant yet. I was feeling worse than Thursday so the team wanted me to get checked out. I spent overnight in the ER, then finally got moved to a "real" room, where I am still at. In the ER, it was determined that I need a higher amount of oxygen, especially during walking or other exercise. I went from 4L(liters) to 10L. The 10L is wonderful in that I can go for walks, use the foot bike, and do other exercise without coughing! There are a few things in the works so I might be able to go home tomorrow until THE CALL! The staff here is wonderful!! Steve was here with me since Friday just hanging out. My son, Braden, will be visiting me this afternoon. One perk is that Braden lives in Madison about 10 minutes from the hospital. Thank you everyone that have donated to my campaign!
May 31, 2024
Today I was bumped up into a more critical part of the transplant list. I am #1 in the Blood Type A lung transplant at UW Hospital Madison. Over the past two weeks my lung disease has progressed into a more critical zone. The continued support of my family and friends is humbling to Me and Steve. I also give a big shout out to my son, Declan. He is being asked to do more than the average 18 year old graduating from High School! I can't lie, the past week has been very difficult with the rapid decline in my health. I am still focusing on the positive outcomes of transplant. I know that I am excited for a call to be transplanted, but I also know that someone is getting the call that a loved one has passed. That person's gift of life to me is AMAZING!! Someday I will be able to thank a family for their generous donation!
May 27, 2024
Day 12! Steve and I still anxiously wait for our call! Honor, our dog, is so patient on our very slow walks together! She is so sweet! My boys are great by checking on me to see how I am doing. Steve, of course, is always here for me no matter what. I couldn't ask for more, except new lungs :)
May 23, 2024
It has been one week today that I was put on the transplant list. I am eagerly waiting for the call! The road after transplant wont be easy, but I look forward to the challenge and a better quality of life!
May 19, 2024
On May 16th, I was officially put on the transplant list at UW Hospital in Madison WI.
April 23, 2024
Ann is approved to placed on the transplant list in mid-later May 2024
