Transplant Central June 2007

June 17, 2007 at 11:00 p.m. Karin took three walks today covering an estimated 330 feet! The was possible because Tim and Linda were there to assist with extra hands. Karin could probably do this much walking everyday, however there is insufficient hospital staff to provide assistance during the week, especially in the evening. It would be wonderful if visitors could assist Brandon with taking Karin on these walks, especially evenings. Monday's schedule includes a trip to radiology to have her feeding tube re-adjusted, dialysis, PT, and OT. Karin's nurse said today that Karin's radiology sesson tomorrow morning has priority. Because Karin's feeding tube has migrated to her stomach she is getting her meds into the stomach instead of her small bowel. This also has the effect of creating some discomfort because her stomach has not been receiving food for several months (110 days, actually). Repositioning the tube back to her small intestine will allow her meds to be more effective. There were no visitors this Father's Day outside of Brandon and her parents. Karin has communicated she feels she could do more in the way of PT and OT if challenged - we know how Karin loves a challenge.

June 16, 2007 at 11:00 p.m. Brandon reports that Karin awoke about 6:45 this morning and was out of bed by 7:45. When Tim and Linda got there they took her for a walk down to the nurse's station and back. Karin's cousin Bobby had his 15th birthday today so Karin was alone for several hours while her family attended his party. She handled being alone quite well resting in bed until they returned. Later this evening Karin took another walk with the advantage of the extra hands of her parents to help. After one slight detour she walked again to the nurse's station and by the time her evening stroll had ended Brandon calculated she walked about 240 ft. Brandon has been pacing off the various route lengths and today's walk was a new high distance record for Karin. I suggested it might motivate Karin even more if we were to have some kind of challenge or contest associated with the distance she walks on a particular day. Maybe some kind of a walk-a-thon pledge might be fun to organize with folks pledging a certain amount for each foot she walks or something like that. If anyone would want to organize something like that contact Tim. Brandon and Karin's parents had a briefing today on what medications Karin is taking, what they are for, what they do, and what they look like. To put things in perspective, pre-transplant Karin had to take 18 different meds. She is now taking only 6. The main one is Prograf, an anti-rejection drug. She is also on prednisone, a steroid, and Reglan for her stomach. The other three meds are ones she may be able to discontinue once she is discharged because they are being given to prevent infections that are sometimes picked up in the hospital. They include an anti-viral, anti-microbial, and an anti-fungal. Another special visitor today was her dachshund, Kola. Kola isn't fond of hospitals but did spend some time on Karin's lap cheering her.
Monday promises to be a very busy day for Karin. It is a scheduled dialysis day and now she is also scheduled for repositioning of her feeding tube. Apparently the tube has worked it's way out of the small intestine up into her stomach so she is not being fed right now but is being given only sugar water to keep her hydrated. Pray that on Monday Karin's renal and gastro procedures can be scheduled so they do not conflict and also for her custom trach to arrive.

June 15, 2007 at 10:35 p.m. Karin had a typical day with a successful dialysis. She took a walk down the hall this evening and traveled about 10 feet shy of the nurse's station - roughly 100 feet. Linda reports that when asked if she wanted to share anything personally on the web site, Karin wrote that she wants to be out of the hospital by the 4th of July! What a firecracker! When the respiratory therapist came in today she treated Brandon and Linda and Tim to the sound of Karin's voice when she placed a speaking valve in Karin's trach temporarily - Karin then repeated, "Hello, my name is Karin; today is June 15th." Her voice was very small but it was GREAT to hear it. Karin is also continuing her exercises and moving around as much as possible. She enjoys swinging her legs over the side of the bed and sitting on the edge of the bed while visiting with her family and guests.

June 14, 2007 at 10:45 p.m. Karin had a good day, but seemed a little tired today, She did not go on the bi-pap until about 1:45 a.m. last night and she was up early this morning. Her back is bothering her some, too, perhaps because they took away her air bed and she is now sleeping on a conventional hospital mattress. The ultrasound they did on her arm looked fine, so it did not identify the cause of her discomfort. P.T. did not show up today but Brandon and a nurse managed to get Karin up and took her for a walk of about 130 feet. Dr. McCurry, her transplant surgeon, popped in but did not stay or examine Karin because he got beeped right after he showed up. Brandon washed Karin's hair, and that was pretty much how Karin's day went. Uncle Jack and Aunt Kathy report, "Karin is looking better and better each time we see her!!! "

June 13, 2007 at 10:45 p.m. Karin had another good day. She is still waiting to hear about the custom trach, but the doctors had their hands full with four transplants today! To give a sense of the activity at UPMC, this year there they have done 65 transplants involving hearts or lungs or combinations of the two. Amazing! Karin's right arm has been aching so they performed an ultrasound on it today; perhaps she has pulled a muscle using the walker. Dialysis drew a minimal amount of fluid today. The catheter was removed to promote her kidneys to wake up. Karin walked about 144 feet today, but they were short-handed this evening so she did not get to take a 2nd stroll after dinner. Karin got visits from Uncle Bob & Aunt Marilyn and from Uncle Jack & Aunt Kathy which helped to the time to pass quickly. Brandon has been invited to attend an "exit seminar" to prepare care givers for taking care of transplant recipients after they go home. Karin's surgeon, Dr. McCurry, is going to the UPMC Hospital Board to request an increase in funding for the Cardio-thoracic transplant program. Finally, Karin is on the bi-pap machine about 5-6 hours during the night and it really helps her relax and sleep soundly, but even when they take her off of it and she is breathing without any external assistance, she falls right back to sleep.

June 12, 2007 at 11:15 p.m. Karin was up bright and early and ready for physical therapy at 8:30 a.m. Today the therapist wanted Karin to try using a regular walker without help. The session was interrupted so it wasn't a long walk. Karin didn't really like walking this way but it represents one more hurdle jumped toward unsupported mobility. Brandon had hoped to help Karin take another evening walk. However the nursing crew on her floor was understaffed tonight and no one was available to assist as a spotter for safety. Brandon didn't want to risk Karin taking a fall while walking without a nurse along so she did not get to do it. Karin has now transitioned out of the air bed and into a regular one which seems pretty comfortable for her. She feels it is actually a little easier for her to get in and out of this one. The last three nights have been good sleeping ones. The Bipap time will be cut back again and that is something you can pray about. Her heart rate seems to be dropping compared to early post-op numbers which seems to indicate that her heart is working with more ease - another very good sign. Heart transplant patients typically do have a little higher-than-normal heart rate. Karin's heart rate had been running over 100 but it is now in the mid 90's while she is at rest. Brandon said he is not able to read her the Post-a-Notes every day because he can't always get on the hospital computer, but that the e-cards which come to the room and the snail mail cards have been such a boost to Karin's spirits. Aunt Marilyn and David & Laurie have been extraordinarily faithful with daily messages and they are appreciated so very much at a time when the days seem long. Some early donors to the fund have also recently sent much appreciated follow-up gifts. Miss Krepps' J.O.Y. class from White Memorial Church in Milroy was especially generous in blessing Karin with another generous donation. Brandon said it isn't the amount that matters but knowing people haven't forgotten Karin is what makes his day. So he sends you all "many thanks" for cards, letters, and donations. Finally, Karin is still waiting patiently for the custom made trach with speaking valve and she wonders if it will slow down the trach downsizing process. Please pray that it won't delay her recovery progress, too.

June 11, 2007 at 12:30 p.m. Brandon reports that Karin had a quiet relaxing Sunday yesterday. In addition to the usual PT exercises she does evey few hours, she walked down the hall with Brandon about 90 feet. There were no visitors Sunday, and Brandon gave her a relaxing shampoo in the evening. This morning the PT people came by early to take Karin for a walk and give her a morning exercise workout. Nothing new or different in this PT exercise routine right now. At this writing Karin is expecting the dialysis person to arrive shortly. Brandon says they are reducing the target amount of fluid to be taken by dialysis in the hopes this will excite Karin's kidneys to "wake up" and become more productive. He says Karin's spirits are good. Even though their anniversay was May 27th, anniversay cards have been trickling in almost daily and they are enjoying reading them along with all the other good wishes and expressions of support you are sending to them.

June 9, 2007 at 6:15 p.m. Today has been a nice slow-paced, relaxing, weekend day for Karin. She did her PT exercises and took a walk down the hall without the aid of the walker. Brandon said Karin was pretty much walking "on her own" during the stroll with only the nurse and himself on either side of her having a hand ready to catch her "just in case." She covered about 75 or 100 feet round trip today. He also said Karin is almost to the point where she can stand up from sitting in a chair all by herself now. Karin declined going outside to the private patient garden today so she and Brandon watched a SilvesterStalone movie on TV. Karin seems to be doing just fine with the downsized (6 mm) trach. Brandon seems to be holding up well, too, and is still spending nights on a cot in Karin's room. They look forward each and every day to receiving and reading e-cards and mail. Please remember to pray for Karin's kidneys to come back to full function, and that the new custom trach and speaking valve will let her make the progress she needs to make in speaking and swallowing. Thank you and may God bless you and the donor's family.

June 8, 2007 at 7:00 p.m. Karin had the endoscopy this morning and it permitted the medical staff to get a good look at what is going on inside. On the positive side they were able to determine that her vocal cords are perfectly fine and it is just a matter of Karin not expressing enough air to seal the trach diaphragm. She did not pass the swallow test, however. It seems her esophogus/nasal diverter valve in her throat closes OK, but some fluid does not get swallowed and still lays on top of the closed valve. They are going to wait until Karin receives her new custom trach and speaking valve, then re-evaluate her hoping the new custom equipment will clear up both problems. They expect it should. Dialysis was cut short today when her blood pressure dropped, so they only withdrew 170 cc's and did not achieve the one-liter target. Karin had one visitor today; a woman whose husband is awaiting a heart transplant. Brandon and Tim and Linda have been a resource for this couple in exploring fundraising for his transplant, so his wife stopped by to say "Hi" to Karin & Brandon. Later this evening Brandom is planning to brush Karin's teeth then take her for a walk down the hall. He said when they went outside to the Spinola Patient Garden yesterday, the flowers were blooming, songbirds were chirping, and they saw a nest of robin's eggs in the arbor. Just the thing to cheer them both. But they will stay indoors today - it's raining in Pittsburgh.

June 7, 2007 at 10:35 p.m. Today we celebrate 100 days that Karin has had her new heart and lungs and they are doing fine, bless God! Karin did not sleep too well last night, but today she walked down the hall to the nurse's computer area, a distance of about 80 feet. When Karin got to the end of her walk then Brandon sat her in a wheel chair and took her outside to the Spinola Patient Garden on the third floor. Karin has been doing her P.T. exercises and is almost to the point where she can stand on her own. Karin received several phone calls and two special visitors today; one was a man who received a lung transplant the beginning of April and the other was Georgina, a friend of Bob Catalano's wife, who received a heart-lung transplant about 10 years ago. Both transplant recipients are doing well and were very encouraging to Karin. Karin is scheduled at 9 a.m. tomorrow to have an endoscopy procedure to better evaluate her swallowing and determine whether or not there has been any damage to her vocal cords because of the second surgery. It will also be a dialysis day for Karin.

June 6, 2007 at 6:10 p.m. Karin was up and walking again today. She covered about 60 ft round trip distance before dialysis started. Brandon hopes to be able to take her to the outside provate patient garden later this evening, however it is a little cool there today, so it might not happen. Karin did not have much success using the speaking valve. When the collar/cuff on her trach tube is deflated, it seems she does not have sufficient force of air to make her vocal cords resonate strongly. They are still waiting for a custom made speaking valve just for her, hoping this will correct this situation. Brandon continues to stay overnight but now he has a cot. He says Karin got a really good night's sleep last night, but was deep into an afternoon nap when Uncle Jack and Aunt Kathy showed up for a visit. They let her sleep, of course.

June 4, 2007 at 11:00 p.m. Karin had a tiring day today since it was another dialysis day. Brandon had a conference with the Nurse Practitioner assigned to Karin and when she asked about any concerns he shared his concerns that Karin missed several sessions of PT last week because of conflicts with dialysis. Thankfully the PT team managed to beat the dialysis team to Karin's room today though so she did get in a PT session with them first. She walked about 60 ft. today with a pair of therapists on either side for security but otherwise unassisted and without the walker. Dialysis went well and the endoscopic procedure could not be fitted in today but is still planned, as is the speaking valve eventually. The doctors will be examining Karin's vocal cords when they do the endoscopy also to make sure they haven't been damaged. Karin continues to do her leg and arm exercises several times a day with Coach Brandon. Also another good report is that they see some improvement in numbers on her kidney function so keep up the prayers for that healing and recovery to take place completely.

June 3, 2007 at 5:30 p.m. Karin is having a good day today. At her weigh-in today Karin discovered she is about 30 lbs. lighter than she was pre-transplant. The PST lady said it is good to see someone as cooperative and positive as she is about hospital care and procedures. She says Karin's progress may not be as fast as she would like but she says Karin is giving it her best shot and things are definitely moving along. Karin continues to exercise as reminded by Brandon but he said most encouragagingly she often initiates them on her own. The results of the aspiration test the other day with the blue dye were good so the next step will be an endoscopic microscope observation of her swallowing some food. If it goes well she will progress to adding Jell-O and some soft foods soon. She took two walks in the hall yesterday. The morning one was not as long as the day before but Karin gamely got in a second one in the evening to make up for that. Karin's schedule today included another walk and Brandon says she is getting better at swinging her feet on her own to get out of bed and notices more strength in standing and walking. She also had some special visitors yesterday evening. Soon-to-be parents, Brian and Kelly (her brother and sister-in-law from Maryland) came by after cousin Kristen's baby shower. There is to be another baby shower today and Karin hates missing these family gatherings. So please pray it will not be long before she can participate in family events like these. Pray comfort for the donor's family also.

June 1, 2007 at 10:15 p.m. Karin had another full day today. She was out of bed early to do her exercise homework from PT. Then back into bed for dialysis and two units of blood and then out again just in time to greet Tim & Linda. Brandon said she missed her PT with instructors because she was on dialysis when they came by (again). When he shared this with one of the patient care personnel she suggested they take Karin for a walk. She rounded up a rolling walker that also provides some forearm support and Karin managed a walk of an incredible 90 ft. to the nurse's station and back for a total of 180 ft. Brandon was so proud of her. Megan Marks stuck her head in to say,"Hi!" just as Karin was being readied for dialysis so her visit was short but sweet. The Speech Pathologist also came by to test Karin's voice and her swallow. She deflated the diaphragm and put her finger over the trach opening. Then she told Karin to say the word "Hello" as loud as she could. Brandon said it was a very faint "Hello." Her oxygen level dropped during this test and the Pathologist determined that Karin is not quite ready yet to talk. They also did a swallow test which consists of Karin using a straw to swallow some water with blue food coloring in it. By observing whether any of this shows up during suctioning of lungs or is coughed up they will be able to tell if she is aspirating any. Test results were not shared but it seems like it went pretty well.

We will continue to update Karin's progress and add pictures as we receive them.