Finally Home -- some comments from Linda

Dear family and friends, 

I am so happy to be home finnnnnnnally.  It's so wonderful to sleep in my own bed, have my own recliner and be back with Mandy, who's been invaluable this summer, and our two dogs.

I still have to work out the exact dose of diuretics I need to be taking to stay out of trouble and keep from getting out of breath.

I can't begin to thank all of you for your support, positive thoughts and love. I have needed this to keep going through some difficult days. John told me every day who emailed and responded to the blog.

We are both in need of lots of rest to recover from the last two months. My wound is very small now and the new home health nurse came by yesterday to check on it.  I can be reached by home phone, 839-7877 or by cell, 834-2938, between 10 am and 9 pm and will be ready for local guests by mid week.

The main thing is that my heart has healed and appears to be working very well--no more leaky valve. Now I just need time to get strong again; the surgeon said that it will take about 6 months for the heart to completely heal; then I will go back to Stanford for a follow-up visit.  We were so fortunate to have such a terrific cardiologist and the surgeon's nurse to provide ongoing, caring support the last 5 weeks--these people are truly the best of the best.

Thank you all so much for your healing thoughts and care, love, Linda

Friday August 7th, 12:12 M

Hi.  We are home!  Mandy had cleaned the house and Linda had her meds and went to sleep.  We had a message on our phone from the local home- health folks that a nurse would arrive today to assist us.  Great!  Linda's dad and his care givers were, throughout this process, so caring and thoughtful.  While we were glad to leave Geyserville for home, we appreciate, so much, the help rendered by Bill McCutchan and his caregivers.  Now, we have to keep Linda on course with meds, dressing changes and shots and we have to attend to all the unpaid bills and other issues we could not respond to while we were gone.  In addition, Linda's diet is to be infused with protein to in assist healing.  I'll communicate more today, after the home health person arrives and intervenes.  John

Update, Thursday August 6th, 1AM

Hi. Yesterday, at about 7:45 PM, Linda was exited from Stanford Hospital! We ate a little snack and took a slow trip up to Geyserville, where we are now. Linda is now sleeping. I packed her wound, gave her the required meds and tucked her in. Now, I can blog.

Linda is off oxygen and IV diuretics and is able to walk a bit, although she takes care not to overextend herself to the point of being winded. Tomorrow, after sleeping in, we will complete our trip to McKinleyville. Linda is looking forward to sleeping in her bed and seeing Mandy and enjoying her dogs. She is, also, anxious to begin eating whole foods...gradually.

Her wound must be packed three times a day, she must be given injections once a day, for intestinal motility, and she must take a range of meds. I think she does not relish the fact that I give her injections, but, the Stanford staff trained me and the shots are just given under the skin, not into muscle. We will be visited three times a week by home health nurses to assure that she progresses and that we are doing things correctly. So, we'll be in good hands and in our own home and with our Humboldt friends and family. Mandy will leave for Fresno State on the 14th and this means that she will get very little time with her mom. She has really stepped up and taken care of our home and dogs for the 8 weeks we have been away.

I'm tired right now, and, so, I will sign off and blog more tomorrow, once we are in place in McKinleyville. Again, my thanks to all. There is no way we could have survived this difficult time without all the care, generosity and concern manifested by all of you. WE are lucky people to have you in our lives. John

Update August 4th, Tuesday, 11:38 PM

Hi. A much better day today. Linda walked, remained free from the need for oxygen and was doing well with the diuretics. Tomorrow, the staff plans to give her oral diuretics and, if she does well, send her home in the afternoon. If, so, we will travel to Geyserville, spend the night and continue to McKinleyville, Thursday. I've got my fingers crossed that all of this goes well ,but, dare not count on this happening for fear that something will, once again, derail our plans. It has been a long road and there is a good chance that we are seeing the end of this part of our journey taking shape. More tomorrow. John

Update August 3rd, Monday, 11:11 Pm

Hi. Linda had a less than great day. She suffered a nose bleed at 4AM and the bleed lasted 4 hours! The nose bleed was a product of the prescribed Plavix, which is a blood thinner, and irritation of the nasal passageways on the part of the oxygen system, which includes a nasal tube. She was able to get back to sleep this morning, but, once she was up, she had trouble functioning well without the aide of oxygen. In addition, the medical staff took Linda off IV diuretics and gave her oral diuretics, and, the oral means was not efficient and led to less evacuation of of fluid from her lungs. The staff made these changes to her treatment as efforts to have Linda ready to go home, where IV systems are not realistic and oxygen is difficult to deal with. Today, in response to the problems noted today, the staff increased her oral diuretic dosage and applied her oxygen at a reduced pressure rate. I think we were all a little too optimistic about Linda's status, based on how well she did yesterday.

Good news, includes the fact that her wound continues to heal at a good rate and her surgery, in fact, repaired her, here-to-fore, defective heart valve; no signs of leakage and blood pressure is within normal limits. Linda continues on a liquid diet and her abdomen is softer, and, Linda does not experience the abdominal pressure against her lungs that she felt earlier last week.

So, tomorrow, we will look at how Linda is doing and look at a slower process ( slower than the means initially used today ) to assist Linda in being able to go home. Until tomorrow, John

Update M onday August 2, 1:17 AM

Hi. Just returned to the motel after taking Emma back to SF. She came down today to see her mom. Linda had a good day. She walked and seems better able to breathe. Her abdomen continues to improve. We will see later today how the medical staff size her up as to level of imrovement. My guess is that she will be still in the hospital through Tuesday. But I may be wrong and we may be given a green light before Tuesday. Linda will have to be feeling better before we will risk taking her home. I will blog more later today to let you know about her status. John

Update July 31, Friday 10:40

Hi. Linda had an MRI today that indicated that her lungs contained fluid to the extent that her breathing was distressed. So, the doctors put her in the hospital to give her on going oxygen, to apply more diuretics and to test for pneumonia. The doctors stressed that this was not an emergency situation and that being in the hospital will allow treatment in a setting where Linda can be monitored and where she will feel comfortable that her difficulties can be addressed in the most immediate way. Linda was admitted, IVs were established and treatment began. In terms of positive news, Linda's wound looks really good and her abdominal difficulties appear to be improved. She is on a total liquid diet and is taking new meds and all , in terms of the abdomen, looks much better. Linda has had such a hard time with breathing this week that events today offered her some solace that cause for her breathing difficulties was established and is now being addressed.The doctors want to have the diuretics administered slowly so Linda will be in the hospital another three to four days. I'm confident, as is Linda, that, once we get past this breathing issue, she will be able to go home. I'll keep you up to date. John

Update, July 30th, Thursday, 7:13 PM

Hello. We saw the GI doctor today. He indicated that the gas in Linda's abdomen could not fully account for the respiratory distress Linda experiences. Although the abdomen is distended, the degree of distention should not result in the breathing problems Linda displays. He prescribed three meds for Linda to take to reduce the gas and suggested a consult with a pulmonologist at Stanford to look at the fluid that is in her lungs to determine a course of action to eliminate the fluid. Here-to-fore, the fluid has been viewed by the doctors as inconsequential, but, this doctor feels that the lungs play a significant role, in concert with the gas in the abdomen, to create the stress Linda feels in terms of breathing. So, we are expecting to meet with a pulmonologist tomorrow, if the cardiologist can arrange it for us, or, on Monday, when we are to be seen by the Stanford surgeon, as part of our regular schedule of meetings to look at the wound. Our status, as far as where we will be over the weekend, is dependent upon the schedule of meetings tha tcan be arranged tomorow and what comes from the meetings, should they occur. So, two steps forward, one step back, on the way to getting to the bottom of Linda's difficulties. And that's the way it is... John

Update Wednesday, July29th,6:14 PM

Hi. As it turns out, we will not be able to see the GI doctor until tomorrow at 2:00PM. There was a mix up in terms of Stanford knowing of the doctor's availability.We did see the surgeon's nurse, today, in order for her to review the progress of the wound healing. She feels the wound is healing nicely. Linda experienced a day of rest and walked a little to encourage intestinal motility. Otherwise, not much is changed and not much to report. We are still in Palo Alto at a Holiday Inn Express. It is not Geyserville, or home, but it allows us to be here until we get Linda's problems resolved..Thanks, for your support. John

Update July 28th, Tuesday, 6:44 PM

Hi. Just returned from Stanford and we are ensconced in our motel room. Linda had a long afternoon of x-rays and consultations with the medical staff. Her current problem is a bloated intestinal system, filled with major pockets of gas, that presses on the lungs and inhibits breathing. As a result, Linda is limited in movement or exertion and the lungs are compressed to the extent that mucus forms in parts of the lungs. This mucus creates discomfort and contributes to coughing "jags" and inability to draw breath easily. So, Linda was referred to a G.I. doctor who used to work at Stanford, and with whom Linda had contact three years ago, when she first had distention of her abdomen, which was found to be related to radiation damage. This doctor now works at another hospital in the Stanford area. We plan to see this doctor tomorrow. We hope he knows a means to rid Linda of the gas, as all the usual methods have been tried without positive results. We also hope to find means to prevent the problem from occurring, again, in the first place.

The Stanford visit today was so remarkable in terms of the responsiveness of the staff, their kindness and thoroughness. We've never before experienced such dedication and commitment on the part of a professional staff. Where people like this come from, and how they are made, is a wonderment. We both came away from the meetings today with a better feeling about human kind and a sense of true partnership with the medical team.

So, still here. More tomorrow. John

Update, Monday, July 27th,4:29 PM

Hi. Just returned to our motel room in Palo Alto after our visit at Stanford Hospital. Linda's left lung was found to contain fluid and her intestinal system is operating with a too low motility rate. These issues combine to cause shortness of breath, from pressure, and fatigue, from poor oxygenation. She was told to take more diuretic to pull fluid from her body and she was given a strong laxative to reduce the press of the intestines on her lungs. We will return to the hospital tomorrow to see if she is improved. The good news is that her wound is healing nicely and she was taken off the wound vac. I was taught to perform wet to dry gauze packing which must be done, now, 3 times a day until the wound is completely healed. At this time, we will be staying yet another week in Geyserville, assuming linda is improved tomorrow to the extent that she can go away from the Stanford area. We are to return to Stanford next Monday. We will not leave the Stanford area until we are sure Linda is able to breathe freely and is not experiencing discomfort. That is all ,for now. John

Update, Sunday, July 26th, 2:54 PM

Hi. Headed for Stanford right now. Linda had a rough night with coughing, fast respiration and poor sleep. We want to get to Stanford ,today, to try to get blood tests and imaging completed early in the morning so that we can have something definitive discussed when we meet with doctors at 1 PM, Monday. There is something effecting her breathing and we have to isolate what this is as soon as possible. I will blog again, once we know something tomorrow, probably, late tomorrow. Thanks, John

Update, July 25th, Saturday, 11:49

Hi. Linda is doing better today. She and her doctor talked late yesterday and she agreed to take a small dose of diuretics as the doctor indicated that the blood tests revealed that she was "too wet." So we've gone from "too dry" to "too wet" and, apparently, this is the reality that lots of people in Linda's circumstances face. Linda's heart rate and respiration, as well as blood pressure, are in normal ranges, right now. But, we still have to be alert to the fact that the right balance of fluids sometimes takes a while to affect. Her situation is complicated by other problems she has had...all related to radiation ... and these problems require administration of meds that have to be taken into account when devising a course of action specific to her heart surgery. Linda's mood is, of course, better today and she is able to rest without worry about her heart rate. So, that is all for today. We go back to Stanford on Monday and hope to be given permission to retreat to McKinleyville, but, we will have to wait and see how Stanford staff respond to the wound status and this issue of fluid balance. Thank you, for your support. John

Update Friday, July 24th, 2:45 PM

Hello. Linda's heart rate continues to flux. We tried several approaches yesterday and seemed to strike out. Last night, I checked every two hours and found a great deal of variability from normal to very high. This morning, before the visiting nurse came, Linda took more potassium and guess what... the heart rate was normal when the nurse took Linda's vitals. The nurse took blood samples and spoke with the Stanford doc. The doc. ordered stat on the blood results and will talk to us this afternoon. He was pleased that the potassium stabilized the heart rate. He voiced that we are still getting the fluid situation right and seemed okay about our efforts to resolve the situation. Linda has no temp and, other than some additional, expected ( because of the meds ) intestinal problems and allergy problems, is doing well. If the potassium does not keep the rate stable, then, I suppose, we will have another trip to Stanford in our near future. I will keep you up to date. Thanks, John

Update, July 23, Thursday,10:45 AM

Hello. Linda rested well throughout the night. I checked her heart rate every two hours and it remained within the expected range. However, when she woke up, she was congested, again, and coughed a great deal which elevated her heart rate. We will try some more allergy meds in the hope that we can reduce the severity of the reaction. The problem is, that many of these allergy meds dry you out and we are working to hydrate Linda. So, lots of water and Gatoraide, juices and soups. I will keep you posted as to her progress. John

Update July 22, Wednesday, 2:54 PM

Hi all. Well, yesterday was a hard day. Linda, again, experienced an elevated resting heart rate ( 106 to 109 per min. ), was fatigued and out of breath. Calls made to Stanford resulted in taking her off the diuretics completely and hydration of her system. Over night, every two hours, we checked her resting rate and it gradually came down. Today, the visiting nurse came by and confirmed that Linda was doing better. Her heart rate at rest, as I type, is 88 per min. ,which is about Linda's usual rate. Linda is bothered by a bad allergy and woke up with a chest full of congestion and so we are taking measures to lessen the influence of the allergy on her well being. We will continue to monitor her today and tonight, as we did last night, just to be sure she continues on the right path. Her Stanford doc. has been very accessible and wonderfully responsive to our calls. And so it goes...or..."and that's the way it is"...Boy, have I missed Cronkite over all these years, and , to think they repalced him with Rather!! John

Update, July 21st, Tuesday, 10:20 AM

Hi. The Stanford visit resulted in being told that at least one more weeek of living near by, in Geyserville, is necessary. While the wound is healing nicely, there is one part of it that is still deep enough to require the wound vac packing. Next week should see us leaving for home and using "wet to dry" gauze packing, which is something I can do and will not require specialized supervision from Stanford. We would still see a home health nurse in McKinleyville, but, just to review and assure progress, not to pack the wound. Diuretics were further reduced by Stanford doctors and, again, the staff at the hospital were very encouraging about the wound status and Linda's progress. Thanks, to all for the support. John

Update Sunday, July 19th, 10:10 AM

Hi. Saturday was a day in which Linda rested, for the most part. She had some allergy problems last night and was kept up from coughing a couple of times. Today, will be more rest and, tomorrow, we will be back at Stanford for the weekly check. The wound vac continues to operate reliably and we note no apparent negative effects from the reduced diuretics. We hope to be given the green light to go back to McKinleyville tomorrow and, yet, know that the wound may not be healed enough for us to leave Geyserville. Thanks, for your attention to Linda. These are tough circumstances to deal with and the knowledge that people care, makes a big difference. John

Update July 17th, Friday,6:47 PM

Hi. Linda was just cleared to leave the hospital. We will drive back to Geyserville as soon as the paperwork is completed. Her diuretics were adjusted and she feels better. Just a blip along the way. But, a bit of a freight there for a while. We will be back at Stanford on Monday for our scheduled appointment. The wound vac was changed today and the wound continues to heal and, actually, looks pretty good. Thanks, for the support. John

Update-July 17, 2009 11:45 am

Hello All,

Last night linda was complaining of shortness of breath, fatigue and had difficulty breathing. My dad took her down to stanford late yesterday and upon arrival they ran some tests which indicated her heart and lungs were fine. More tests today showed however that her symptoms were due to her fluid levels, so they have taken her off her diuretics and she has improved. Now they have to figure out what the right amount of diuretic is for her to take. For now she will remain at Stanford until they can figure that out. More updates later:)

Mandy