Help Kathleen Breathe Free
*If my husband gave you a card that landed you on this page, this is the reason he wears a mask: to prevent him from bringing any germs or viruses to me; I had my transplant July 24th 2023 and am totally immunocompromised.
May 20, 2024. It has been one year since I started this page, and a LOT has happened in that time! (The Updates section below has real-time reports in greater detail.) My right side lung transplant was July 24th; and for the first few days all was going well. The doctors started to notice a buildup of fluid in the lung cavity, and when they analyzed the fluid, it was found to be the lymphatic fluid, known as Chyle. I was moved back to ICU while more tests, x-rays, etc. occurred. Chyle is normally present in the lymph system, but it is not supposed to be leaking out into the lung cavity! There were numerous attempts to stop the leakage, including using a robot system to put 1 mm clamps on the leaking lymphatic ducts, but none were successful. The final solution was another operation, this time to remove a portion of the lymph glands (about the size of a small fist) from the lung cavity, so I have not one, but two scars on my back, and four smaller scars where the drain tubes were located. The things a lady will do for beauty marks!
While all of this was taking place, I was experiencing constant delusions, hallucinations, mood swings, and weird dream-states. It seems one of the anti-rejection drugs, in less than .5% of patients, and only when combined with certain anti-infection medications, will produce these symptoms. Lucky me, I happen to be one of the .5%! When the doctors finally figured this out, they changed up the medications, and within five days I was back to my feisty self, and wanted to get out of the hospital.
At this point, I had spent 51 days in the hospital, 47 of those in ICU. In that time-frame, I had lost 20% of my body weight, and almost all of my muscle mass. I could not walk without assistance, and even then I could only manage very short (15-20 feet) walks. I had to learn how to eat again, as I had been on a feeding tube for all of the ICU time. I even had to learn how to swallow water! It took another 17 days before I was well enough to be released to the Craig Nelson Rehabilitation Center (also a part of University of Utah Health Care).
My time in rehabilitation was spent learning how to walk, stand, sit, climb stairs, eat and drink; how to shower and in short everything. I could not be released until the doctors were satisfied I would be able to move safely in my home, and that there would be someone with me 24/7 when I was discharged.
I was discharged on October 18, 2023. A total of 89 days in the hospital and rehabilitation clinic. When I was released, my daily regime consisted of 33 pills and one liquid medication, plus pain pills (Tylenol) and anti-nausea pills as needed. I went to pulmonary therapy 3 times a week at the University Hospital, blood was drawn as often as three times a week, and at least one clinic appointment each week for the first 6 months of “home care”. My husband, Bob, or my sister Kay, were with me 24/7 through those first 6 months, but even that did not prevent me from falling once, and I managed to cut the back of my head open when I fell on a heat vent under a desk, which meant a trip to the ER and a staple in the back of my head.
On Friday, April 12th, the doctors re-admitted me to the University Hospital for extreme dehydration, as my creatinine levels were elevated, which can put a person on dialysis. After being intravenously fed fluids for three days, I was released on April 15th, and admonished to drink constantly, aiming for 64 ounces or more per day. Mio is my new friend!
Thursday, April 25th, I received a call from the transplant team that I needed a transfusion of red blood cells, as my numbers were dangerously low. This began a 10-day stay at the hospital; my bone marrow had shut down and was no longer producing blood cells, and my kidneys were beginning to fail, the level Creatinine was at 4.2 mg/dL. ( the normal level of Creatinine is .57-1.11 mg/dL in a person of my weight/sex/height/age, etc.) Over the next ten days, I had 4 red blood cell transfusions, 2 bone marrow biopsies (the first one came up “dry”) and countless blood draws, etc. The eventual conclusion was two of the anti-rejection drugs, and one of the antacid drugs, had interacted causing the bone marrow and kidneys to stop functioning. They stopped those three drugs, and my bone marrow started to produce blood cells and platelets again, and my kidneys resumed functioning. I was finally released after 10 days of being poked, prodded, drilled, and filled. One bright spot of this hospital visit was the visit from the dietitian, who explained that I needed to eat high calorie small meals, and at least 6 times a day, in order to regain the weight I have lost over the past year. The three drugs that were stopped, one has been replaced by a different pill with the same benefits, but hopefully without the side effect, and they have re-started one other medication at a much lower dosage. The trick is to find the right balance of drugs in the cocktail that can produce the needed results without the damaging side effects.
Before I started this whole adventure I needed to put together my care team. I had to have someone with me 24/7 for at least six months post-transplant. Fortunately I have a wonderful husband who loves me very much and was willing to do whatever was needed to take care of me and make our home environment safe. The second person was my sister Kay, she would drive up from Lehi three or four times a week to care for me and take me to my various doctor’s appointments. Bob and Kay watched over and cared for me lovingly and patiently. I don’t know how I would have gotten through this without these two special people whom I love very much and hold close to my heart. My adult children were my “second string”, when Bob or Kay were unable to take me to my appointments, or just watch over me, my children stepped right up. Meghan, Michael and Sandy filled in whenever they were needed. I am lucky to have such caring children. I will never be able to put into words what Bob, Kay and my children did for me. I am forever grateful to have these loving and compassionate people in my life. All I can say is THANK YOU and I LOVE YOU to infinity and beyond.
Bob says: This whole process would have been impossible were it not for my wonderful employer, the “Smith and Edwards Co.” They are not a national company, but a local Utah employer since 1947. (I work in the West Jordan store, I’ve been there since it opened in 2017.) The entire company, the owners, store manager, and my department manager, have been very understanding and supportive of me. They allow me to take all the time I need to care for Kathleen, even during the long hospital stay and and the emergency “I have to leave NOW” events. While in this age it is customary to curse at your employer, I have only praise for Smith and Edwards Co. When you have a chance, please patronize this wonderful company. If you don’t know about this excellent company, here is their website: https://www.smithandedwards.com/
(May 20, 2023) Hello, and thank you for visiting my fundraising page. My name is Kathleen Hartman, I am a 60+ grandmother, mother, wife, and sister, who enjoys kayaking, RV camping, hiking, fishing, barbeque, geocaching, and most importantly, spending time with my husband and family- two adult children, an amazing daughter-in-law, and five wonderful grandchildren- while doing “all of the above.” That is, until about 5 years ago, when I was diagnosed with connective tissue disease related interstitial lung disease, pulmonary fibrosis in the context of lupus, and systemic sclerosis with anti-synthetase syndrome. As a life-time non-smoker, this diagnoses was totally unexpected!
In English, that doctor-speak means my lungs are failing, and continue to fail, and cannot be restored or improved by medication. I have been on oxygen 24/7 for the past 3 years, and this has dramatically reduced, or you might say curtailed, my previously active lifestyle.
In 2002, when the Winter Olympics and Para-Olympics were held in Utah, I volunteered as an assistant to the NOC for the U.S. Virgin Islands teams, and as an assistant to the NPC for Great Britain’s teams. It was truly a once in a lifetime experience, being in the Olympic Village with all the participants, experiencing the different cultures, making new friends, and expanding my world-view. I particularly enjoyed meeting and working with “Grandma Luge,” Ann Abernathy, who taught me age really doesn’t matter!
Mt. Olympus Chapter #23, Order of the Eastern Star of Utah, a Masonic affiliation organization, has been an integral part of my life since 1987; I have served in various positions in my chapter, appointed and elected, including twice as Worthy Matron; and have had two appointed positions in the Grand Chapter OES of Utah. How integral, you might ask; well, our son met his wife through the OES!
I have been actively employed throughout my adult life, until my health deteriorated to a point in December 2022 when I was forced to take a medical retirement.
Now that you know a little about me, here’s why I have created this fundraising page. The only way for my life to continue is to have a lung transplant; this is a $1,000,000 + medical procedure, with both pre-operative and lifetime post-operative costs not included in that figure. We do have health insurance, through my husband’s employer, but it does not cover all of the expenses for the transplant or for the post-operative needs and medications, which I will require for the rest of my life. I am raising money for the nonprofit Help Hope Live to fund uninsured medical expenses associated with transplantation.
I have chosen to fundraise for Help Hope Live in part because Help Hope Live assures fiscal accountability of funds raised and tax deductibility for contributors. Contributors can be sure donations will be used to pay or reimburse medical and related expenses. To make a tax-deductible donation to my fundraising campaign, click on the Give button. Please share a link to this page on your social media accounts, if you would like to help me meet my goal. I thank you in advance for your generous donation.
Thank you for your support, hit the “subscribe” button to receive updates, and please sign my guestbook before you leave!
Kathleen Hartman
For more information, please contact Help Hope Live at 800.642.8399.
Updates (72)
July 28, 2024
July 28, 2024. I'm 4 days late posting this, but here it is. July 24th was Kathleen's 1-year anniversary with her new lung, Trixie. That's right it's been a year since transplant. If you have followed us on this page, you know it has been a year of ups and downs. But right now, it is really looking up! The transplant team has determined Kathleen does not need to go back to the clinic for 60 days; and if her blood draw this week is good, she will not need to have any more draws for about the same period of time! We are going to enjoy the freedom of not making weekly visits to the U hospital, thank you very much.
In the past sixty days, Kathleen has greatly improved, both in her physical strength, and in her determination to "get rid of the hose." She is driving, going to the gym, going out shopping, participating in the household chores, cooking, etc., all things she hasn't been able to do for some time. Additionally, she is now disconnecting herself from the oxygen for periods of 90 minutes, a couple of times each day. Her supplemental oxygen needs are now at 1/2 liter, which is the lowest it's ever been. She is able to concentrate better, and is working on crossword puzzles, etc., to help increase her mental abilities. Her appetite has greatly improved, as has her ability to taste and enjoy the food she's eating.
Speaking of eating, we are now able to enjoy one of life's little pleasures, that of dining out. Although we still are conscious of the risks this potentially involves, by timing our outings to "other than rush hour" we have been able to enjoy some of the fine restaurants that living in the Salt Lake valley affords. It's still somewhat novel to actually sit in a restaurant and be served, letting someone else do the cooking and clean up!
I am set to retire on July 30th, and Kathleen and I are making plans to get the RV out and go camping! We've already go two trips planned in August, and more in the works; although we are starting out close to home and at relatively the same altitude as we live at, we expect this to change as we acclimatize ourselves to having more freedom, and as we discover how Kathleen can breath at higher altitudes. We are planning on getting the kayaks back in the water; look out fish, we are coming for you!
With her improved strength and breathing ability, we have been able this summer to spend time on our deck in the evening, talking about past trips and events and planning new ones with every expectation of fulfilling our desire to enjoy our leisure time together.
All of this would not have been possible without the lung transplant, which would not have been possible without the support of our family, friends, and donors. The ongoing costs of post-transplant medications will be with us forever. While Medicare and the Advantage program we have chosen will pay for the vast majority of our expenses, we will still be fundraising for HelpHopeLive to assist in paying her uncovered medical expenses and help other transplant patients in their journey.
Well, that about wraps it up for this update. More to come in the future!
Thanks to all of you for your continued thoughts, prayers, and donations.
Her happy, and soon to be retired, husband, Bob.
July 17, 2024
July 17, 2024. Another great day! Kathleen went to the gym yesterday, and did 1 mile on the NewStep and 1/2 mile walking the track. Her O2 stayed up, the lowest was 89%, which is not bad. She's also working with free weights at home, and taking her O2 off for 90 minutes at a time at least once each day. We had our son and his children over Sunday for smoked ribs: Kathleen helped a lot to get everything ready, and it was a wonderful day. It's so nice to see her making such big strides in the recent weeks, walking, driving, participating more and more in the daily routines of life! All of her tests and vital statistics are in the good range, or moving towards that point! And her appetite is returning quite nicely. The transplant doctors have released her from weekly clinic appointments, her next one is 60 days out! The time between lab work (blood draws) is also increasing. This may not seem like a big deal, but it means we have so much more freedom in our plans.
On another very important note, she looked up campsites she wants to visit; and Monday night we made reservations for two trips the first part of August. It's exciting to know we are able to get back to RVing, it has always been an important part of our lives together. When I think back to pre-transplant days, I am amazed at the difference. I thought, prior to transplant, that we would never get to this stage, where she is very mobile, very alive, and has such a positive attitude. It's been worth all the effort!
And on a minor note, I turned in my two week notice yesterday. I am retiring on July 30th. When we started this journey to transplant, I was not sure I would be able to retire (insurance vs medical bills) but now I am more than ready!
Thank you for all your continued concerns, prayers, and donations.
Her excited husband, Bob
July 7, 2024
Kathleen Continues To Surprise!
Friday, July 5th, Kathleen drove to the gym and did 1/2 mile on the new step machine, then another 1/4 mile on the track! Her stats all continue to be in the ranges that the doctor says are acceptable.
And Thursday night, she had her O2 off for about 90 minutes. When I asked what the driving force behind all this was, she said it wad time to move forward and get off the oxygen, and the only way to reach that goal is to push herself!
It's Sunday morning, so thank you God; and thanks to all of you for your prayers, concerns, and donations!
Her excited husband, Bob
July 5, 2024
Really Big Day Wednesday July 3! Dr Frye reviewed the blood draw, general stats, current health condition and said Kathleen does not need to come back to clinic for 60 days, unless there is an unforseen occurrence of some type. Her blood cell counts, platelet counts, etc. are all doing fine. Dr. Frye did order an ultrasound of both arms and upper chest, to make sure there is no blockage in any of the arteries or veins. The hematology doctor said her bone marrow is responding well, and blood production is climbing nicely.
So we are all in a very good place.
Happy July 4th, everybody!
Thank you for your continued concern, prayers, and donations.
A very happy husband, Bob
July 3, 2024
BIG ROUND OF APPLAUSE FOR KATHLEEN!!!! Tuesday, she drove to the gym, did her 1/2 mile walk, and drove home. It's a long awaited first, as it has been over a year since she has been this independent. We are off to clinic, x ray, and lung function tests, I post more after we get all of that done.
The slightly less needed husband, Bob (I mean,she can drive herself now, right?)
June 29, 2024
June 28, 2024 8PM MDT
Well, we still don't know why Kathleen's blood pressure drops. All the medications have been checked and double checked, nothing comes up to give us an answer. Diet and hydration have been reviewed, nothing stands out. It's not happening as frequently as it did two weeks ago, but still a concern. She is now wearing a 24/7 heart monitor, and has a book that she records date and time, and what she is doing or feeling when the events occur. So we are just working on accepting that these events happen, record them, the get on with life!
Kathleen is starting to recover some of the muscles and stamina that she lost in that long hospital stay. This week, she walked 3/8 of a mile, without using any handrails, and her O2 saturation actually increased during the walk, from 91 % at the start, to 98% at the finish! Best distance so far, and it's really good that her O2 saturation improved during the walk. Our goal right now is to get exercise every other day, we haven't been able to make that goal yet, but we keep trying!
There were no medication changes this week or last, and this week the doctors did not order a blood draw! We haven't made any trips to the hospital all week. Our car probably thinks there is something wrong with us! She has also gained 2 pounds in the past 2 weeks, now she almost weighs as much as when she got home back in October!
All other "levels," like red and white blood cell counts, her creatinine levels, platelet counts, etc., are moving in the right direction. Hopefully all of this means she is on a path to better health!
That's all I have for now, thanks everyone for your prayers, thoughts, and donations.
Her happy husband, Bob
June 13, 2024
June 13, 2024. First, we want to thank everybody for coming out to Kathleen's fundraiser for Help Hope Live at the Black Sheep bar and grille. There was a good turnout, Bob got to meet and talk with a lot of people who voiced their well-wishes and donated to this worthwhile cause. We raised about $1000.00, so I consider this fundraiser to have been well worth it. A big shout-out thank you to Sam and Greg, the owners of the Black Sheep, for allowing us to fundraise at their bar. The Yeti 65 can cooler was won by G.L., a friend of ours from our credit union, so congratulations to GL. And a big thank you to all who donated!
Well, it has been an exciting (?) week here. Kathleen's blood pressure dropped on Monday to a level that caused concern. We were directed to get a blood draw, and be sure someone was with Kathleen 27/7 to monitor the BP and help her move safely around the house, as low BP can cause fainting. The blood draw came back good, and did not indicate a reason for the low readings. Since Monday, her BP has ben variable, with the readings still in the low range. So for the time being, she has 24/7 companionship, that being Bob (that's me). So far, there have not been any incidents that would cause her to be admitted to the hospital.
So much for the negative talk, here's some good news. Kathleen got new glasses, and looks quite charming in them; and she is better able to read, etc., without eyestrain. Wednesday night, our two youngest granddaughters were installed in Bethel 16, IOJD, as senior and junior custodian (keepers of the Bethell property). Because it was an open air event Kathleen made the decision to go to the installation, which fortunately was held in a covered pavilion, and she enjoyed seeing the installation and more importantly, got to see her granddaughters installed in their first offices. We are very pleased they have decided to follow in this family tradition, as we have mentioned before our Masonic family is very important to us, and having them take this step into a great family tradition is very exciting, and will be a good experience for them. I'll post a picture in her photo album later today.
Today, Kathleen got her driver's license renewed, so she can drive legally, if she is so inclined.
Well, that is all the news from this week, and we thank everyone for the continued support, prayers, and donations.
Her happy husband, Bob
June 6, 2024
June 6, 2024. Well, that was a day! Yesterday (Wednesday) Kathleen had her normal clinic visit, with blood draw, x-ray and pulmonary function test (PFT). Everything appeared normal; the doctors did change one medicine to see if that would ease the stomach discomfort she has been experiencing. We were home, talking about the stress each visit puts upon us, and how nice it was when everything came out ok, like today. Then, the phone rang, it seems her hemoglobin level was dangerously low and she needed an "emergency transfusion," we were directed to return to the hospital, check in at emergency room, and receive the transfusion. We registered with the ER at 2:20 PM, it was 3 hours before they had a room available, the transfusion started about 6 and our "emergency visit" ended at 9:45PM. I hate to think how long it would have been if it was not deemed an emergency! LOL.
So we finally made it home about 10:15, ate, and went to bed.
Hopefully the rest of this week will be quiet.
Her happy, but tired, husband, Bob
June 5, 2024
June 3, 2024. It has now been almost three (3) weeks without a medicine change; all of Kathleen's number are going in the right direction! Her vital functions are all doing well, everything is within parameters; she is eating more and drinking enough to avoid another hospital stay for dehydration!
We held a Fundraiser at "The Black Sheep Bar and Grille" in West Jordan, UT on May 31st, in conjunction with Help Hope Live' Day of Giving; almost $1000.00 was raised. A big shout-out to Sam and Greg, the owners of Black Sheep, their event chairperson Yvette, and the night manager, Tom; all contributed to making this a pretty successful fundraising event. An even bigger "Thank you" to everyone who donated, I made several new friends that night while walking around the bar asking for money. I can't help but mention all our friends from the Masonic Order who came by for dinner, entered the drawing for a 65-can Yeti cooler, and donated. As this was the first fundraiser we have tried, we of course learned a lot, and I will be putting these learning experiences into play for our next fundraiser. If you are in the Salt Lake County area, the Black Sheep has excellent food, a great atmosphere, and wonderful Adult Beverages. I highly recommend them.
Well, that's about it for today.
Her Happy Husband, Bob
May 24, 2024
May 23, 2024. The transplant team called today, and all the numbers are moving in the right direction. No changes in medicines for this week! Kathleen went to the Gene Fullmer Rec Center today and worked on the new step, and her leg extensions, then walked the track for 3/16ths of a mile, that's about 1000 feet. Compared to the 200 feet she was able to walk in the hospital, that's a great improvement. Her plan is to go work out every other day, if her overall condition allows it.
Another great day, and hopes for many more.
Her happy husband, Bob
May 20, 2024
May 19, 2024. The last 10 days have been a constant show of improvement. Kathleen's white blood cells, platelets, and hemoglobin continue to move up; her oxygen saturation remains in the high 90's (excellent), and the red blood cell count is slightly improved. Her Pulmonary Function tests are showing improved capacity in the new lung, which is the result of more exercise and activity. The constant cough and very sore throat Kathleen experienced for 90 days have both worn themselves out and gone away. Kathleen has reached a point where she no longer becomes tired during the day, and her appetite is improving, due in no small part to being able to taste food better. She has lost a considerable amount of weight over the past year (which she really didn't have any to lose), but now that the weight has stabilized/is increasing, she treated herself to some new outfits, and I do say she looks good in them! (Of course, I am not biased at all.) We have been out to dinner a couple of times, being careful to go to restaurants were we feel comfortable with the food safety, and at not busy times. Kathleen even picked our favorite Thai restaurant for one of the outings, and the food was extremely tasty.
Saturday (May 18) night, two of our granddaughters were initiated into Bethel 16, Job's Daughters International, which is a Masonic related group for young women. We were very excited to be able to attend the ceremony! Yes, we wore masks, did the social distance thing, and yes, she had an O2 tank, but it was wonderful to see some of our old friends again, and watch the ritualistic ceremony performed by Bethel 16 of Midvale, UT.
Today both of us signed up for gym memberships at the Gene Fullmer Recreation Center in West Jordan, so we don't have to drive up to the University Hospital for her physical/pulmonary therapy. This county-run facility is less expensive than commercial gyms, and we hope we won't have to see all the "hotties and hulks" showing off while we try to exercise! LOL
Our plan right now is to have a HelpHopeLive fundraiser at The Black Sheep Bar and Grille in West Jordan on May 31st. This will give us an opportunity to explain what HelpHopeLive is, and why we are fundraising (Duh! It's the medical bills, stupid). I'll post more on that later this week.
Thank you all for your kind words, thoughts, prayers, and donations.
Her happy and hopeful husband, Bob!
May 10, 2024
May 9, 2024. Kathleen has been home now for 3 days, and the lab tests this morning showed marked improvement! Her White blood cell count is in the normal range, her platelet count is coming up nicely, her red blood cell count is moving up (still below where it should be, but climbing), and her ceretatine levels is going down! All of this is great news, and makes us think the doctors were correct in believing the combination of Celcept and Evrolimus was causing the bone marrow to stop its proper function. Her energy level is up. and her spirits are up as well. All in all, it's been a good day at our house!
Thank you for your continued support. prayers, and donations.
Her happy (and somewhat relieved) Husband, Bob
May 6, 2024
May 6th, 12:30 PM
Dr. Morrell says, "Go home." Thank God! Now we just have to wait for the paperwork. We finally pulled away from the hospital at 3:15 PM, so "only" 2 hrs 45 minutes of waiting. But it is all good, Kathleen is home now!
May 6, 2024
Monday. May 6th. 12 Noon. All of Kathleen's numbers are looking good right now! We are waiting for Dr. Morrell, from the transplant team, to give the green checkmark for discharge. I'll keep you posted.
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.
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Guestbook
November 2, 2023
My prayers are with you.
Eric Jones
September 22, 2023
Good luck and god bless.
Anonymous
July 29, 2023
Meghan is such an amazing daughter and has been my friend for decades. I wish you the best in your journey.
Rebecca Day
June 7, 2023
Thank you for sharing this so we can donate! My mom is turing 65 this year and going through the same exact thing--she's had lupus (SLE) for about 20 years, and it mostly affected her lungs and kidneys, along with having RA as a side effect. She had stage IV kidney failure and reversed it and got off most her meds by following a plant-based diet (Forks Over Knives). Unfortunately, lungs can't be remedied. Ten years ago, our rural docs couldn't understand why her o2 sat was only in the 80s. They mentioned oxygen but she shewed it away, and about 3-4 years ago she FINALLY started using it. She finally was diagnosed with pulmonary fibrosis, and without oxygen, her levels quickly drop to 30% sat or so. It's an awful and terrifying disease. We set her up appointments at Mayo to get a full workup just to exhaust any experimental drug options and make sure her diagnosis is correct, but she wasn't comfortable traveling the 8 hours there on oxygen, so has made peace to stay at home mostly (though she lives in constant anxiety over her o2 sat). She'd never consider a lung transplant, and while she's otherwise healthy, I don't know that she'd recover well, anyway. I'm so glad it's a good fit for you and there's hope! We are here if you need anything...seriously. Even a stranger, I'm happy to help in any capacity. xx Stephanie (Lynds #1)
Stephanie LeVeque
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