May 6, 2024

Sunday, May 5th. Sunday morning update. Kathleen's numbers are all going in the correct directions! Red and white blood cells, hemoglobin, and platelets are all going up, and the creatine count is going down. Her transfusion yesterday only affected red blood cells, which is what it was intended to do. It is not the reason for the other changes. The doctors believe what we are seeing from these improved results means the bone marrow is resuming its duty! Her cough is basically gone, as is the diarrhea. This points to the suggestion, reinforced by these test results, that the cause of bone marrow misfunction was caused by Myfotic and evrolimus, as those are the two medications they have stopped. The end result is she MAY be released from the hospital Monday or Tuesday. I will of course keep everyone posted.

May 6, 2024

Saturday, May 4th. Here is today's update: Kathleen's ceretatine levels (kidney) are trending downward, which is good. Platelet and WBC slightly improved. RBC still down, transfusion today to bring them up. No results yet from the bone marrow biopsy, don't expect the results for a few more days. Trixie is behaving just fine. Kathleen is in good spirits, even ate a dunfords chocolate donut with chocolate frosting this afternoon!

May 6, 2024

Friday. May 3rd. Kathleen will be in hospital at least until Monday. Her platelet counts, and her blood cell counts, are too low for her to be away from here safely.

We won't have any results from the biopsy until at least 48 hours, and some results will be 4 weeks out. According to Dr Cayhill, the first order of business is restarting the bone marrow, then they kidney issue, then balancing anti-rejection drugs against the first two items. So really a fine balancing act right now.

Her spirits are good. Her phone is working fine, so calls and texts are very welcome. Late today, her blood counts are improving! Red and White blood cells, hemoglobin and platelets are up slightly!

May 6, 2024

Thursday, May 2nd. Some of Kathleen's numbers are coming back in line. There is a slight increase in White Cell counts, and the creatine level (kidney function) is going down slightly. (That's good, it means her kidneys are starting to work better.) Not too much to report, except, that I cannot believe how strong she is being. Her mental attitude is terrific!

May 6, 2024

Wednesday, May1st. They ook Kathleen back for the procedure at 11:15. Told me it would be "about" 1 hr 15 min. Doing it with CT scan guidance rather than Xray so they can see inside the bone and be better enabled to get usable sample today. Absolutely no idea if she is going home today or not. The shortest 1.5 hours I ever experienced, actually about 30 minutes. Kathleen is about ready to be taken back to her room. No idea yet on discharge time or date. Yeah. the nurse did not know for sure if they got the samples, but she did say they probably wouldn't have stopped until they did, since they had the equipment there etc. Latest update, they got good sample of the bone marrow and the bone itself.

May 6, 2024

Tuesday, April 30th. The bone marrow biopsy was a failure, they did not get a sample, although they tried for an hour. Her numbers are still too low. Well. they are going to try IR procedure sometime tomorrow to see if they can get thr biopsy that way. Interventional radiology, guided by radiology. Like when they tried to tie off the lymph ducts. Given the lack of success that time, I'm not really impressed, but I guess we will see.

May 6, 2024

Monday, April 29th. Kathleen's counts are still very low, no sign of improvement. Dr Cayhill, from the transplant team, told me today they stopped Myfortic when she came into the hospital. as it can surpress bone marrow cell production. Today, they also stopped Evrolimus, as it can also surpress bone marrow. The reason for the bone marrow biopsy is to see what has stopped production in the bone marrow. and if can be restarted without a bone marrow transplant. which has its own complications. They are postponing the bone marrow biopsy until tomorrow 1 PM. Some technician did not show up for work today

May 6, 2024

Sunday, April 28th. Other than repeately taking blood work, and keeping Kathleen as comfortable as possible. nothing has really happened today. A bone marrow biopsy is planned for Monday. This is taken from the hip, in the pelvis bone, not the back. thank God. Please keep her in your prayers

May 6, 2024

Saturday April 27th. Kathleen has been placed on extreme safety precautions. Nurses, Dr's. aids, all have to wear protective gear to prevent her from becoming infected with anything. Visitors, myself excepted, also have to gown, mask, and glove before entering the room. All equipment must be sterile before entering. The Dr's believe her bone marrow has stopped producing blood cells. Her immune system is totally compromised

May 6, 2024

Saturday. April 27th. This mornings updates. RBC, WBC, hemoglobin and platelets levels still low. It seems Kathleen's bone marrow is not working as it should, there could be many reasons. There will be a platelet transfusion, and possibly another blood transfusion, tomorrow. Plan is to do a bone marrow biopsy on Monday.

Kathleen is in pretty good spirits.

May 6, 2024

Friday, April 26th. Morning report Kathleen's numbers are better this morning, as predicted after the transfusion. Running a couple more tests to see if the doctors can figure out why the red and white blood counts went so low.

Afternoon report

Here's what we know tonight. Kathleen's red and white blood cells, and hemoglobin counts have been dropping for the last 30 days. The transfusion helped the RBC and hemoglobin, but not the WBC. Further tests are in progress, but no answers yet. With her WBC count as low as it is, she is in danger of any bleeding. For her safety, doctors are keeping her in the hospital until they can come up with some answers or a plan to correct the problems.

May 6, 2024

Thursday, April 25th. We received a phone call from the Dr's that this morning's blood draw showed Red Blood Cell counts below a safe level, so we were at the hospital by 4:30. The transfusion started, and the Dr told us they were admitting her when it was done. She was admitted to the Pulminary care ward by 10:00 PM. She was put on critical care watch. due to her platelet counts being very low, increasing her fall risk. Whit blood cell counts were very low, and if she fell, she might bleed out from any bruising

February 22, 2024

February 21, 2024

Wow, it's been quite a while since I posted an update. I apologize, but life has been very hectic. And let me give a big "shout-out" right now to Kay Hill, Kathleen's sister, who has been so supportive and giving of her time and energy as Kathleen continues to recover. Kay has been shuttling Kathleen back and forth to Pulmonary Therapy since mid-October, every Monday and Friday, and on Wednesdays if I had to work. She also stayed with Kathleen all day from October 18th through December, any day I had to work, as Kathleen needed to have someone with her 24/7 through the first 6 months, until she passed the point of being in fall danger. But on to Kathleen. . .

She is really doing well, participating in Pulmonary Therapy 3 times a week, going to clinic visits once a week for the first 5 months, now it is only once every two weeks. She does still require oxygen most of the time, at 1 liter pressure (for comparison, she was on 9-10 liters prior to surgery); she is working to get rid of that oxygen requirement through therapy and exercise. Kathleen no longer requires a walker when she goes out, and we have stored most of hospital-type equipment we had in the house for her. Her appetite has returned and she is now eating just about as much as she did long prior to surgery. The doctors now allow her to go out to restaurants, etc., as long as we don't go during "busy" times (to avoid infectious disease transmission). Valentine's Day we celebrated on February 15 (to avoid crowds) with our good friends Vickie and Earl, at Five Alls restaurant in Salt Lake City! Yes, there are some ups and downs, as with any surgery recovery, but it's been 99% positive. We have managed to avoid any infections, colds, flu, etc., through the wearing of masks and limiting social distancing. I still wear a mask at work, and yes, I do get "asked" about it often; so often that I printed business cards that direct people to this page to explain it. Why masking became so political I will never understand. She (and I) have received a lot of support from friends, the Masonic Family, co-workers and of course family. Speaking of family, we were able to celebrate Thanksgiving and Christmas with our family; Meghan, Mike & Sandy, and the five grandchildren.

Kathleen and I are very thankful that she was chosen for a lung transplant, and we cannot speak highly enough of the Lung Transplant team at the University of Utah hospital.

I promise I will post more often in the coming months.

Again, we thank all of you for your support, care, donations, cards, and prayers.

Her happy husband, Bob!

October 27, 2023

October 27, 2023. So here's the report for Kathleen's first week at home! She is doing very well, we had the first after-discharge appointment last Monday, and everything is A-OK! She is healing nicely, all her vitals are well within parameters, and the doctors are satisfied with her progress. Kathleen has therapy Monday, Wednesday, and Friday; with a clinic visit each Monday. Her overall strength continues to improve. She is moving about the house with ease. using her walker, and does walk without it for short distances. Unlike at the hospital and rehab, she can sleep through the night without interruption, and she does.

Of course, we are still being extremely cautious, not going out to restaurants, etc., and I am wearing a mask whenever I'm out of the house. But it's Wonderful to have her home! Thank you all for your prayers, cards, and concern.

Her happy husband, Bob

October 19, 2023

It's day 20 of Kathleen's "Get me the hell out of here! Campaign, and day 88 of the entire hospital/Rehabilitation stay. She's home, sleeping in her own bed at long last. I'm going to take this opportunity to thank everyone who has supported us in this journey, most especially her sister, Kay Hill, who has been there with me through the terrors and victories. My fabulous friends at Smith and Edward's, from the owner through the entire staff, who have been so willing to work with me through numerous unplanned missed days and supported me in ways I could not believe. Our numerous friends from The Order of the Eastern Star, and my incredible brothers from Twin Peaks Lodge #32. F &AM of Utah; and of course our son Mike, daughter Meghan, their families, and my Sister Sylvia, brother David, and their families. All of you have my heartfelt thanks and appreciation. I could not have made this journey without all your love and support. I will continue to post updates ongoing, although not as frequently as in the past 88 days.

Again. my heartfelt thanks to everyone!

Her happy. but tired. husband, Bob

October 11, 2023

Wow, what a day! It's Monday, Day 13 of Kathleen's Get me the hell out of here" Campaign, although after what Kay and I saw today, it should be Kathleen's "I'm getting the hell out of here" Campaign. We were there early, her day began with a good breakfast, which she consumed very well, while the Speach Therapist taught all of us about her calorie needs, protein etc. This began at 7:30, then it was off to the gym. Kay and I learned to to best help her out of bed, to the toilet, in and out of the shower, how to brace her and be able to respond if she faltered, how to walk with her for support, how to work with the wheelchair and walker. We learned how to transition from bed, to chair, everything, and bless the PT team, they taught us using hands-on, this is how, now you try it, with everything. She also worked in the kitchen, making a microwave muffin, which involved getting the product from the cabinet, reading and following instructions, etc. Then it was stairs, both up and down, then riding a recumbent bike. Kathleen was working hard, that was evident, but she kept smiling and giving her best efforts. I was truly amazed at the progress she has made the past two weeks! Then we had a lunch break, then a course on the meds she will be taking, when she takes them, and how. You don't get a pass when you are on transplant medication, it has to be every day, at a certain time. no exceptions, no excuse.If you miss a dose you have to call in for instructions! Then more PT/OT. I know all three of us were well worn out when it was over, but I am here to tell you, she wants to come home! Her transfer date is October 18th. I, and I believe Kay, are excited and happy about the progress she is making.

It was a GREAT day!

October 8, 2023

"Get me the hell out of here" Day 10 (Saturday)

Kathleen was in great spirits, and very alert when I visited Sat. night. She easily recalled conversations we had earlier in the week, as well as commenting on recent news events. We talked about when she would be coming home, and what had to happen before and during the transition. So I am very excited for all of this to happen! Kay and I will be meeting with the PT, OT, and Pharmacy teams on Tuesday to better acquainted ourselves with the transition process.

Her Happy Husband, Bob

October 8, 2023

"Get me the hell out of here" Day 9! Sitting up in her chair drinking Gatorade, that's where I found Kathleen! She was in a good mood, smiling; she even correctly identified the rose from our garden I had clipped and taken to her. When they brought her dinner, she attacked it with vigor, and ate over 50% of it. It helps when you can drink water as you eat. On Tuesday, when Kay and I go up to learn how we can help with her therapy as she transitions home, we will also meet with the pharmacy coordinator to learn about her medications and how to manage them at home. I can feel this all coming together!

October 4, 2023

It's day 8 of Kathleen's "Get me the hell out of here" Campaign, and it's going great. I've read the reports from her PT and OT team, and she is doing excellent to use their term. Today, all her stitches were removed, they have started a medicine to excite her appetite; she walked the track in gym with her walker, and today she started stairs. She was in a chair tonight, ate dinner, and talked about getting home. Her blood sugar is still behaving well,which means no insulin, and everything else is going well. Next week, Kay and I will spend a day with her during therapy so we will have a good idea how to help her when she comes home. Right now, they are talking about releasing her on October 18th!

September 30, 2023

Day 4 of Kathleen's "Get me the hell out of here" Campaign. First, some information. Visiting hours are 8 am to 10 pm. She has therapy all day Mon-Sat, best times to visit are after 4 pm on those days, or anytime on Sunday. Parking is valet service only; pull to the front of the building and they will take care of your vehicle. Masks are still required, and hand sanitizer as well. She was in fair spirits tonight, but a little frustrated because she doesn't have the strength to do more. She still has tube feed 6PM to 6 AM, regular diet otherwise, but she can't eat a lot because her stomach has shrunk so much. They make her leave the bed to use the restroom, but that's good. They also make her dress, no more hospital gowns allowed. In my opinion, that's all positive. Her voice tonight was very good, she was very much in "the here and now".

Her happy husband, Bob

September 28, 2023

Day 2/3of "Get me the hell out of here". Kathleen ks much improved the last 2 days. She is supposed to start semi-solid food today, and is scheduled to move to rehab as soon as a bed is available. She's doing well with her leg, arm,and swallow exercises. Dr Cayhill says Kathleen's core is much stronger than expected. Kathleen told Mike and I when we got here today she wants to get up and out of bed! We will see what happens when PT gets here today Kathleen did an excellent stand from the bed, and walked to the chair, ate some lunch, then. . . Kathleen is now in Neilson Rehab Center, Room 308. The "Get me the hell out of here" Campaign is now shifting gears!

September 27, 2023

September 26th. Today is day 1 of Kathleen's "Get me the hell out of here" Campaign. As you might expect, she was very awake and in the moment today, her voice was much clearer and louder than it has been recently. She told me she wants out of the hospital, into and out of rehab. I explained that meant we were going to be doing the exercises any time Kay or I were there, and she needed to work with rehab. She agreed, and we did arm, leg, breathing, swallowing exercises interrupted by the nurse and aid taking vitals, dispensing, meds etc for about 6 hours. She was able to stand, with assistance, for PT but wouldn't walk. So, some move forward. All in all, a good day. There have been a couple medication changes that are making positive effects.

Hopefully, we can move her forward!

Her Happy Husband, Bob

September 25, 2023

Sunday night update! Kathleen was able to stand and take a few steps twice today with PT. The doctors are changing some of her medicines to help her stay in the present and reduce the delirium she seems to slip into on occasion. She was much more awake today, and able to sit in the chair for about 3 hours, and is working on her ice chip eating and swallowing treatments. Her overall stats are all good, the lung is working fine, the blood pressure concern is under control, and everything else is moving along. There is some discussion about moving her to rehab, but right now I don't think that will happen for a week or so, as she doesn't appear strong enough for that yet. Thank you for your prayers, concern, and donations.

Her happy husband, Bob

September 23, 2023

Satturday, September 23, 2023, 6PM MDT. ok, it's Saturday night. Today is 61 days Post-Transplant; 63 days in the hospital. But there is some light at the end of the tunnel, the plan is to transfer Kathleen to Neilson Rehabilitaion, which is on the U hospital campus, and part of the U health system, on Tuesday. So if it happens then, I will be there when she moves. Her O2 is staying up at 99+, they are still keeping her on O2, as she is having separation anxiety when they take away her canula. I'm told it's ok, that is one of the items rehab will clear. Probably her greatest issue right now is the loss of muscle, which causes her to be afraid to even try to stand up, because she feels her legs giving out, and there is a lot of anxiety about falling. Kevin, her PT yesterday and today, was able to get her to stand 3 times today, hugging him and he supporting her. I do think this will get better pretty quickly in rehab, as they will be working with her basically all day. She was pretty cognizant today, knew who she was, etc.

Thank you all for your prayers, concerns. and yes, donations.

September 22, 2023

Thursday, September 21, 2033 8:28 PM MDT. Day 59 Post-Transplant. well. I have some updates.Kathleen is still very weak, but things overall are moving in the right direction. All the tubes, etc, are out except the feeding tube and a midline picc. They don't want to take the midline out until she is more stable, in case they need to inject fast acting drugs. The speech therapist now wants her to chew and swallow ice cubes, then dry swallow swallow 3-4 more times, the goal is 100 times per day. She still drifts a little bit out of reality, but they have taken her completely off oxytocin for the time being. Her last dose was 2:19 AM today. The current long-term plan is to have her transfer to Neilson Rehab Center at the U campus on September 26th. She did get up into the chair twice today and used the toilet during one of those trips. One of the biggest issues getting her to walk is her fear of falling. She is afraid the PT staff won't be able to support her when her legs give out. Just need to change her mind about that. All in all, it was a good day.

September 17, 2023

September 17, 11:10 AM. After 47 days, Kathleen is out of CVICU. Now the healing process can begin. The plan right now is for Kathleen to start eating again tomorrow, and continue physical therapy daily. I don't know yet when the chest tubes are coming out.There is a new picture of Kathleen in the albums, her last picture in ICU.

September 16, 2023

Friday, Sept 15, 2023 6:55 PM MDT. Friday night update. Kathleen is much better tonight, no longer intubated but still foggy from the sedation. She is on a high flow O2 (6 liters right now). She probably will go back to standard nasal canula and 1 liter sometime tomorrow.

There is no chyle leakage.

Repeat cause it's really good news there is no chyle leakage. chest tube outputs are below 100, so they should come out in the next 72 hours if all continues as it is now.

The doctors are continuing Lasix to drain off fluids, she still has puffy feet, and some fluid is showing up in x-rays on the left (old) lung, but again it is draining off. Blood pressure, etc, is all good.

All in all, a good day

September 14, 2023

Kathleen was sleeping, tired, all the stats look good no chyle leak as of yet. The PT team had her up in the chair and doing standing/sitting exercises today. but the pain meds kept her from walking. I did express my concern about the pain medication to the Charge nurse, she will contact the team and see if it can be reduced. as Kathleen is really susceptible to narcotics. Tomorrow the plan is to go back to a solid food diet, get some walking in, etc. I will be there tomorrow to visit with the doctors and assist with PT.

September 13, 2023

Sept 13, 2023, 6:37 AM MDT. Good Morning, here is the overnight report. Kathleen did sleep most of the night, began complaining about pain around 3 AM, didn't want oxy, but did accept it around 4. Slept better after that. Some drop in O2 at that time, so she is on increased flow right now. All other stats are good.

Of critical note, the output from the chest drainage tubes is dropping, as it should as healing progresses, but no evidence of chyle!

I'm working today, so the next report won't be until this evening.

September 12, 2023

Sept. 12,2023, 7:10 AM MDT. 50 days since transplant. Here's the latest from room 2221. I just spoke with the thoracic surgeon team, Kathleen's overall chest fluid output has been consistent with someone who just had chest surgery and shows no sign of chyle. She will be "nothing by mouth" for 1 week to facilitate healing. BP, O2, and other stats are strong and stable. I believe the plan for today includes getting her up and walking. I will post more as I learn more.

September 11, 2023

Sept 11, 2023, 1:52PM MDT. The surgery is finished, Kathleen did well during surgery, nothing to report. The surgeon believes that the problematic lymph node is totally removed, however, only time will tell, the next 48 hours will show if there is any chyle fluid in the drainage tubes, if not, this was successful. So only time will tell. I'll update as I have more information.

Her loving husband, Bob

September 11, 2023

Sept. 11, 2023 8:30 AM MDT. This is day 49 post-transplant; Kathleen just went into surgery for a radical lypmhectomy to remove the leaky ducts. This surgery is going to be about three hours total, I am told. Other than the chyle leak, Kathleen is doing very well,she is walking in excess of 200 feet every day, and doing strength exercises as well. Her new lung (whose name is Trixie) is functioning very well, her blood pressure etc. all remains good. So this surgery, we hope, will be the final event to control the chyle leak, and therefore a first step toward going home.

Her loving husband. Bob

September 7, 2023

September 7, 2023 10:18 AM.

Here's the latest update: Kathleen is scheduled for a lypmhectomy tomorrow. other than that all is well. she is actually eating solid foods and drinking. water and juice. Her blood pressure, O2 and sugar are all behaving well. And the new lung, whose name is Trixie, is doing great!

Thank you for keeping us in your prayers, please share this page on your social media!

The fortunate Husband Bob

September 6, 2023

September 5, 2023, 7:23 PM MDT.

After a 4.5 hour IR procedure to seal the chyle leak today, which was a total absolute failure, I am left with more questions than answers tonight. We do have a meeting with the transplant team tomorrow morning, hopefully things will be more clear after that.

Please keep Kathleen in your prayers.

September 3, 2023

Wow! Get excited with Bob day! Kathleen was able to put on her own socks, stand up with only 1 person assisting, and walk to her chair with that same person. She can now sit up without neck support

September 3, 2023

Good Sunday Morning. Kathleen had a fair day yesterday, she was able to walk about 200 steps. Her O2, BP and sugar are good. This morning she gets a bed bath and then physical therapy sometime today. Right now, her spirits are pretty good and she is very much in the moment. I'll post an evening post tonight.

September 1, 2023

tonight's report: The bronchoscopy showed no sign of rejection or infection; samples are being tested just in case. Kathleen walked 330 feet today, with many fewer breaks than yesterday, all her stats-O2, BP, etc stayed right where they should while she exercised. Then they did 30 minutes of stand-sit exercises. By 4 pm, after beating me several times at rummy, she sent me home so she could sleep.

There is an IR procedure scheduled for tomorrow, so that's where I will be.

August 31, 2023

August 31, 2023 10:30AM MDT I'm posting from Kathleen's room in the CVICU at University of Utah today. For starters today, a broncoscopy was performed to see how the new lung is healing; it was all good. She's sleeping off the pain meds now, physical therapy will start around 12 noon, hopefully it will be as good as yesterday.

August 31, 2023

August 30, 7:30 PM MDT. Kathleen walked, I am told, about 300 feet today. That is the most she has walked in 35 days! There was a little issue with her blood pressure as she walked, the doctors believe it correlates to an uptick in Chyle output. O2 and blood sugar are good, they do increase the O2 when she is exercising, to prevent light-headedness. This afternoon, the asked her to start coloring mandalas again, to help with hand-eye coordination.

They also removed 2 lines, one from her wrist, and one from her neck, as well as the catheter. She now has to get up from the chair, or out of bed, to pee, more walking!

The doctors have ordered a broncoscopy for tomorrow, just checking on how the new lung is healing. Because the chyle output is up, the plan is for another IR procedure on Friday sometime.

We are not out of the woods yet, but, man, it feels like we are making good progress! Maybe she can get out of ICU next week!

Her happy husband, Bob

August 30, 2023

August 29, 2023 9:18 PM MDT Kathleen was able to walk today, from the bed to the nurse's station, the longest distance she has walked in three weeks. The Physical Therapist also had her do "stand-up, sit-down" exercises, which are designed to strengthen her leg muscles. 35 days in a hospital bed and you don't have much muscle left! But she is getting better. The chyle leak went up yesterday, the doctors had adjusted some medicine the night before, but they went back to the first dosage and the leak is now down to 18ml/hour over the past 12. Hopefully it will continue to go down overnight. Her O2, BP and sugar continue to stay in the proper range, even when she gets up to exercise (which had been a problem for a couple weeks). It appears to this layman the doctors are getting the medicines dialed in pretty well, which is a large part of getting her out of ICU, and eventually out of the hospital and into a rehab center. She will need about 2-3 weeks of rehab, I am told.

Bob-Her happy husband.

August 26, 2023

August 26, 9 AM MDT Saturday AM update from her nurse. Chyle leak is down to 4.5ml/hr, definitely moving in the right direction. BP and O2 and stable, blood sugar good. no add-on O2 necessary. Focus for today is to get her up and walking "as much as possible" which probably translates to maybe 4 times, which is a huge improvement. Unfortunately, they were not able to make this goal; Kathleen was having some blood pressure issues when she stood up.

August 25, 2023

August 25, 2023. 10:09AM MDT I'm going to post "real-time" updates today, as I sm at the hospital with Kathleen. Her chyle leak has now slowed to less than 10ml/hr, which is the best it's been since the transplant. The Dr's are planning an IR procedure this afternoon to hopefully seal even that leak up.

Physical Therapy and Occupational Therapy have just helped Kathleen walk from her bed to a chair, then over to the sink, she then sat down, got a wash cloth and washed her face and brushed her teeth! Now they are teaching her leg exercises she can do when she is in bed. Her O2 and BP have stayed up throughout this therapy session. I will be adding new photos in the albums as soon as I figure out how from my phone!

It's now 2:30 P.M. MDT. Kathleen finally moved back to the bed awaiting the IR procedure. Her sister. Kay, was here for 3 hours visiting as well. Kathleen is tired from all the activity and is taking a quick nap while she waits for IR. She was very much in the moment in her conversations with Kay and I over the last few hours, the best I've seen in quite a while.

Last update today, at 4:40 PM the doctors said the chyle leak seems to be diminishing on it's own and the procedure may not be needed. They are going to re-evaluate the situation on Monday.

So now, Kathleen can have ice chips; the swallow team is going to evaluate to see if she can progress to drinking water. It's been a long, exhausting day, and I am going home.

Her loving husband, Bob

August 23, 2023

August 22, 2023. It has been one month since we received the call telling us to go to the University of Utah Hospital, they have a lung. The transplant itself was on July 24th. This past three weeks have been a roller-coaster ride of procedures, drugs, physical therapy, occupational therapy, long days, long nights, worries, phone calls in the middle of the night, on and on. She has been in ICU for 24 of the past 30 days. But today was a high point, Kathleen was well enough to send me a text this afternoon! And she was in good spirits, talking (although it hurts-try going 21 days without water by mouth!) and holding my hand. I did have to remind the staff that she wears hearing aids, and they need to be in her ears and charged up if they want her to hear them. I even wrote a note on the dry-erase board for them to read about it. Maybe tomorrow they will remember to put them in before they try to talk with her. I have added, and will continue to update, pictures in her page showing her progress through this recovery period.

I/we thank all of you for your thoughts, prayers, and yes, contributions.

Bob Hartman, her grateful Husband

August 19, 2023

Aug 19, 2023: The doctors performed the IR procedure yesterday, and seemed to feel it went well; Kathleen was in some pain and they were administering pain meds by IV. The chyle leak (which was what the IR procedure was trying to stop) sent out 800 ML of fluid in 15 hours; 500 ML was in the first 4 hours, so it may be slowing down. They did have to give 1 unit of blood last night, as her hemoglobin's were low. Since then, her BP has been steady and good. Her O2 saturation is very good, 90-100%, even without add-on O2, so that is a positive sign. Hopefully today will be a good day of rest and recuperation for her.

Thank you for your continued prayers, thoughts etc.

Bob Hartman, her grateful Husband

August 18, 2023

August 17, 2022 Today was rough. Kathleen's blood suger crashed to zero, which put her body into shock, the alarms went off & the Dr's rushed in and went to work. They were able to get her stabilized in about 10 minutes; one of the blood tests came back with infection markers, so they have started another antibiotics regimen, until they know for sure what they are fighting. Her blood pressure and O2 are still good, but the leak is not improving, so they will do the IR 6 hour procedure tomorrow to see if they can find it.

I will be at the hospital early tomorrow until she gets done with the procedure and is stable

August 16, 2023

Aug 15, 2023. Today was a much better day, Kathleen really struggled through the past 3 days since the robot operation. Today she was up and watching TV (HGTV, to be exact) when I got to the hospital. She has been moved from Huntsman back to the University of Utah ICU for now. Today, all the vital signs -BP, O2 sat, heart rate, etc.- were normal. because of the pain, she is still on 1 liter of add-on O2. She can breathe on her own, but it is easier this way when she tries to move. The chyle output, which is from the leaking lymph ducts, has fallen 50% over the last 24 hours. If this keeps declining, great, it not, there will be another radioactive dye procedure (like 2 weeks ago) on Friday. Today, she was really in better spirits and a better overall mood than I have seen in the last three days. So maybe I'll sleep better tonight.

Thanks to all of you who have given prayers, cards, calls and donations, Kathleen and I both appreciate all the support.

Bob Hartman, her grateful husband.

August 12, 2023

August 12, 2023. My apologies for not putting updates in lately, it has been a Rollercoaster type of week. I last wrote about the unsuccessful attempt to seal Kathleen's chyle leak; yesterday she was transferred to Huntsman Cancer Hospital to take advantage of a high-tech robot in another attempt to seal the leak. The doctor said the procedure (which took about 5 hours) was arguably successful, the leaks were manifold and extremely minute. The true test of success will be if the leakage, which is being drained via a chest tube, becomes non-existant in a few days. So now we wait.

The nurse was just in, her chyle output is much lower now than when she was admitted.

On a very positive note, her O2 add-on has been reduced to 2 liters. (The doctor increased it to 8 during the procedure.) If all goes well, it will be turned off today and she will be back to breathing free!

Thanks, everyone, for your support, prayers, and yes, donations. All of which mean a great deal to Kathleen, and to me.

Bob Hartman, Kathleen's grateful husband.

August 5, 2023

August 4, 2023. Today was a long day. Kathleen has a chyle leak in her lymphatic system, in a duct in the chest area. (Chyle is the fluid that helps your body dispose of fatty particles, as I understand it.) In a 6 hour procedure yesterday afternoon/evening, the doctors injected a dye into the lymphatic system in an attempt to locate the leak so they could repair it. Unfortunately, they were unsuccessful. It should heal itself, given enough time, but that means a continued stay in the hospital and a continued increased risk of infection; as well as a no-fat, high protean, high sugar diet which means insulin injections while the diet is continued. So, a bit of a bump in the road.

On a higher note, the nasal canula has been removed. She is now breathing totally on her own, with the new lung!

Thanks for all your prayers, support and donations to Help Kathleen Breathe Free!

Bob Hartman, her grateful Husband

August 1, 2023

August 1, 2023. All the IV tubes in Kathleen's neck have been removed, as has the epidural. Her O2 demand is still at 1, which is very good! She is now allowed solid food, and water through a straw. I cannot believe how quickly she is recovering from this Major Surgery.

She is still working to gain muscle strength back in her legs, still a little shaky on her feet. But everyday is an improvement.

Thank you all gor the prayers, calls. encouragement and donations to help Kathleen Breathe Free!

Bob Hartman. her grateful husband

July 31, 2023

Kathleen has been moved out of ICU to a "step-down" room and continues to do well. Slowly but surely, the various tubes, wires and such are being removed. She looks great! Her color is improved, and she does better each day with her walking, etc. There is a lot of physical therapy for her, she still is very sore from the surgery, etc., but it is to me (and here I will admit I am not an expert in such things) the progress is amazing. A big thank you to the doctors, nurses, and other staff for the wonderful care, and to her sister Kay who has been a great support and source of strength for both Kathleen and I.

Bob Hartman

July 27, 2023

July 26, 2023

WOW is all I can find to say. Kathleen has been up walking! doing her breathing exercises, etc., is in very good spirits and is doing very well medically, that is what the doctors and nurses are saying.

They are talking about moving her out of ICU in the next 24-48 hours.

I can say it is wonderful to hear her carry on a conversation without breaking into fits of coughing.

Bob Hartman

July 26, 2023

Kathleen is doing very well, they even had her up and walking yesterday. The doctors say that she is recovering nicely from the surgery, all signs are positive, etc.

July 25, 2023

I was too overcome by emotion last night to remember to post this. The operation was a success! Kathleen has a new lung! I will post updates today, but a big shout out thank you to the doctors, nurses, and staff at U of U hospital for a job very well done!

Bob

July 24, 2023

July 24, 2023. 1:31 PM MDT

Kathleen went into surgery at 11:30 today. The surgery is supposed to last anywhere from 6 to 14 hours.

I'll post updates as I get them

Bob

July 23, 2023

It's 6 AM, Sunday, July 23rd. This is Bob, Kathleen's husband, giving you this update from her pre-surgery room at the University of Utah hospital. That's correct, we got "the call" about 9:15 last night, informing us they have a lung available for her. Kathleen has been poked, prodded, had what seemed like gallons of blood drawn, tested for covid, showered and sterilized. Now we are just waiting for the surgeon to say "go." I'll post another update later in the day.

Before I go, we wish to thank each and every one of you that has called, lifted her name in prayer, or donated. This is going to be a long road, and we greatly appreciate your support.

Bob H

June 21, 2023

June 20, 2023

I had the official call today, I am now "on the list" for a transplant! Although the medical team had agreed it was necessary, and I fit all the parameters for the procedure, and my body is strong enough to withstand the 6-14 hours of surgery, the last step was getting the insurance company to agree to the procedure. They have approved it, thank God, and now we wait for the call telling us the hospital has suitable donor lungs available. We will be keeping our phones on 24/7, and Bob has packed his go-bag. He has also promised to keep at least a 1/2 tank of fuel in the truck so there is no delay when the hospital calls. I'm excited, somewhat nervous, and also somewhat scared. But I know this is the best plan for me to enjoy life and Breathe Free!

Kathleen

June 8, 2023

June 8, 2023 3:51 PM MDT! IMPORTANT UPDATE!!!

I just found out I am approved for either a bi-lateral or right single lung transplant! The last month of test after test after test is now officially titled well worth it! The month of being scared that the doctors would find some other, underlying issue that would disqualify me from the transplant is over!

Now all we are waiting on is our insurance saying they will pay their portion of the procedure. More than ever, your donations now will help me afford the post-operative care and medications the insurance does not pay. Please donate, as you see appropriate, and, perhaps even more importantly, post this page on your social media so we can get the word out to others who might be willing to contribute.

Thanks again for helping me "breathe free" and be sure to sign my guestbook before you leave the page.

June 5, 2023

June 4, 2023: I have finally completed all of the pre-transplant tests and procedures required by the University of Utah transplant center. I'm very fortunate to be living in the Salt Lake Valley and within easy driving range of the U of U Med center; it is the only lung transplant facility in Utah, and extremely well rated for its transplant procedures. I am also fortunate that our insurance considers U of U "in network" for this procedure; it would be totally unaffordable without this. Even with the insurance, it will be an expensive and scary procedure! As for the tests, there were 54 separate orders/procedures I had to complete; one of them involved giving 23 vials of blood! OUCH! Then there was the tube through my nose into my stomach for 24 hours. Talk about uncomfortable!

My husband Bob, and my sister Kay, have graciously volunteered to be my listed full-time caregivers through the operation and recovery. That is to say, one or the other of them will be with me 24/7 for the first 6 months or more after the transplant. Kay is retired and lives relatively close to me; Bob is still working, but his employer is being very considerate with his work schedule and such while we are progressing through this time-consuming and exhausting process. Our two children, Meghan and Mike, and Sandy, our daughter in law, have also agreed to provide transportation, etc. as much as they can; they have jobs, children, and lives of their own.

It's difficult to explain my thoughts and emotions at this point.

My husband and I love the outdoors, and spending time with our children and grandchildren. We normally are in the RV and off camping somewhere from the end of March through October, any time he could arrange a weekend off work away we would go. In the wintertime, we would snowshoe in the Wasatch mountains; in the spring, summer, and fall, we would ride our bikes, go fishing, hiking, geocaching, or kayaking. This lung disease has ceased all that, it is a bit of a project to go anywhere (because I have to take my oxygen tanks with me) and even dinner out with friends can be a bit of a circus. I have gone kayaking with my oxygen tank, when I didn't need as high a flow rate as I do now! But for this year, there will be no camping, hiking, biking, or kayaking; we have to be within easy range of the hospital when a lung becomes available, and after the transplant we have to be close to the hospital for frequent checkups, physical therapy, and in case of any rejection or reaction to medications.

I am going to meet the surgeon, anesthetist and transplant team on Wednesday, June 7th, it will be a 5 hour meeting. I'll post the outcome of the meeting on this page.