Ed
Good bless the broken road that led me straight to you
February 11, 2013 Ed and I went to rochester hospital. Started out with the elevator not opening into the lobby and we had to leave the elevator and walk through the parking ramp and up stairs into the lobby. We went up the gray elevators to the hearth Cath lab and then Ed was taken in without me for prepping. I was called 45 minutes later and was able to see him for a few minutes actually about one hour and then he was taken back for the procedure. They went through his groin and I was called abut 90 minutes later to spend time with him. He was feeling great and we chatted a lot. It was abut 1:30 and they told him he could sit up and walk around 3:30 and he could go home at 4 and they stuck to that time table. Ed was told he couldn't work for 5 days and to go up the stairs only once and sit in a recliner or lay in bed and not get up to eat or use the bathroom. Which he did. The next morning he work up terribly sore and had a bruise on his leg and groin area was about 12 inches long and 5 inches wide. I was very concerned that he had a Hugh hard lump that in ten days later was still there. As of today 2-25 the bruise is going away and the lump is shrinking but still present two weeks later. Very concerned about this and I am glad he is seeing dr. D on Friday for his colonoscopy.
Some days the testing and the unknown really makes me sad.
Wednesday feb 20 we went to dr d's office to pick up scripts for the 25th and prep for the 1st and I asked abut his lump and they felt it should be looked at but Ed didn't want to visit a doctor so we wait on that. I almost cried and a few tears peeked it to think about all the pre stuff Ed is having to go through. I just hope it is worth it in the end and we get at least five more really healthy good years as selfish as I am I want him around when is retire so we can travel and go places. I love traveling and doing things with Ed as he is so accommodating and really is concerned about my happiness as well as his well being. Love you Ed !
Lockport hospital February 25 Monday 8:00 am for gastricial emptying got there at 7:45 registered and was taken to X-ray from there we were taken to MRI at that point we waited less than 10 minutes and then Ed was escorted back to a room where he would eat scrabbled eggs and the be put in the machine with his head sticking out. For the next two hours they would film him digesting the eggs.
Friday march 1 sitting in the lockport waiting room while you are having your colonoscopy. We got here at 7:50 and now it is 9:50 two hours of sitting and waiting but at least I got to sit with you. You had a terrible night of being hungry and using the bathroom and I want to go and pick up the granddaughter today at 4. Sure hope you are up to resting and being alone for the three or four hours it will take to get her. On of the hard parts about being with you in the hospital is my job. I hate taking time away from the students and getting sub plans ready. Sure hope they are good today.
Now I will go back to reading and waiting
March 14 had to take you for the esophageal test at strong this morning we had to get up bright and early and get on the road at 6:32 drive over. not knowing where we were going to be there by 8 o'clock
After waiting for almost 45 minutes then it was finally your turn and they took a lot of time explaining what was going to happen and that he would be slightly uncomfortable as they would be using a larger diameter tube that goes up the nose and into the esophageal tube which they would remove after a few measurements and insert a longer thinner hose which would go all the way to the stomach and stay in for 24 hours.
At that point I had to go sit in the receptionist area while they get what they said they called me back about an hour and a half later and ed was sitting there very grouchy already complaining because after the guy taped the hose to stay into his nose he couldn't get his cannula on. So the guy ,Rodney a nurse, had to move everything and retape everything.
Arrived home about an hour later you just had a lot of pent-up anger saying that it hurts a lot that the nurse, Rodney, seemed to be more interested in giving play by play directions to some nurse in training and you had to yell at him to get his attention that he was hurtling you and the tube was just pushing on the back of your nose and not going into anything. Afterwards they were worried that you'll have a nosebleed
I tried fixing you a sandwich which you just couldn't eat and said it was
uncomfortable eating or chewing or swallowing the sandwich so I ground-up all the chicken and gave it back to him with some water if you have another meal in four hours so if I think I will give him cream of chicken soup. Well he made it through the night without too much complaining and now we're getting ready to return this morning around 10 o'clock to have them take it out
He said this had bette work because he was never going to repeat to be very uncomfortable. After an almost two hour drive with traffic to get back to strong we had to wait over an hour for the nurse to call us. He s about to remove it himself and leave the tube on the receptionist's desk. Taking it out only took a few minutes and we were in our way. Ed still being grouchy about the whole thing.
A few days later we receive a phone call telling Ed there is some type of abnormality and could he come in to repeat the test. Well they then deceived that since he is having no gird or trouble swallowing that the repeat wouldn't be necessary. Another week passes and they call back and tell Ed he needs to repeat the test. They give no explanation as to why. They then schedule the test for sometime in June. Upon hearing the date of the the retest I call and tell them that is unacceptable as we are going back to Cleveland clinic at the end of the month and we don't want his lack of this one test to hold up getting on the transplant list. (Little did we know that this test wouldn't matter at this point) they then give me an appointment of may 9 which I accept. On the morning of April 26 Ed gets a phone call from Suzanne telling him he has appointments on April's 30 and may 1. She asks him at that time to just call and have them send what they have and the clinic can make the call as to if he should repeat the tests. They assure him they will. They don't, when we saw Suzanne on may 1 she only has the ph test results but not the esophageal test results. She makes a personal phone call and they tell her they will relax the results. Well, the fax comes but again it is justice ph and not the esophageal results. We all have a feeling that Rodney messed up the test and rather than say that they just keep putting us off, so now we will have to go back and endure that test all over again.
Wow a lot has happened over the last week.
This is the part I hate, they take you into surgery and I cannot go with you.
Well last Tuesday April 30 we drove to Cleveland for two days of appointments. Stating at 8am Wednesday with lab work. The weather is beautiful and Molly is in the car but not too hot. Between appointments I was able to walk her and make sure she had water. She is such a good dog. Things went as scheduled on Wednesday and we ordered from a local pizza place for dinner. Dinner was really good. I was so tired that I slept after dinner for three hours woke up for an hour and then off to sleep for the rest of the night. Back to Cleveland in the am for more appointments but today we meet with the lung transplant surgeon and receive a score. All of Ed's test were good yesterday and his six minute walk was same as last time. He is retaining a little more co2 but otherwise things looked good. The social worker said she has cleared us for surgery so we are good to go.
Then the bomb hit us in our appointment with the nurse Suzanne before the doctor came in Ed received a phone call from scheduling about another appointment for so blood tests. I went out and asked Suzanne what that was about and she came in and said she needed to talk with us that his blood work had showed and Ed interrupted her at this point and said what I have hepatitis? To which she answered yes hep C. So now the doctor came in and gave us this speech about how great Cleveland clinic was and that they would still do a transplant with hep C. He went on to explain many things about our score and what it all means. Our score is only 31.97 or 32 and with type o blood he could be on the waiting list for 24 to 36 months. This really disappointed us especially me. I was under the understanding that the last time we were here that the doctor wanted him listed as he is hardly moving any air. I sodas hoping for the old Ed back, the one who could and would work circles around me.
So now with the bad news that Ed has hep C the next step is a liver biopsy and ultrasound to see the extent of the disease and then start him on meds to try and lower his numbers if not stop the disease altogether. Another real shocker is that I myself could also have hep C as it is 5% chance of hep C transfer by sexually contact and there sure has been lots of that LOL how I love that guy. No way to tell where it came from or who might have had it first but they said mrs. Davis you should contact your GP when you get home and be tested for hep c. This is what I did and there should be a script waiting for me when I get home and I will pick it up on Tuesday and have some blood work done on Wednesday then I will wait a week for the results. Something I have decided to not think about until I find if I even have hep C. Nothing I can do about it anyway so might as well know and then try and treat it.
Back to Ed with the news we just received it is decided that he would return today may 6 to have the biopsy of his liver and then we will wait a week for those results. Right now he is being prepped for a 20 minute procedure with an hour recovery time. They are going to lightly sedate him and enter through the juggler and thread a wire through his heart and into is liver to do a few pressure tests and take two or maybe three pieces of his liver out for testing. Yuk sure hope they do a better job that is heart Cath.
Well that procedure went well. Ed had this silly standing joke he told everyone who would listen that he needed extra nerve medicine because his wife was driving him home. Haha but most of them liked the humor. We had this nurse who was going to help him go to the bathroom and she couldn't lower his bed it was funny to watch. She finally discovered that the bed would not go down because his oxygen tank was underneath the bed. She took out his cart and a rubber foot went flying and then she tried to lower the bed with the tank still there. Finally he got to go pee. Then he was getting dressed and he reaches up and pulls off the bandaid where they entered his juggler vein to do the procedure. The nurse and I are like hey you can't take that off now you have an open hole in your neck. The nurse had to apply a new bandaid now that was funny Ed said he thought it was one of those heart monitor sticky things.
Seems they won't take us early so we have to sit around for an hour. We were outside with Molly but it was a bit chilly with just a t-shirt on so we came inside but nice we did as Ed is chatting with his daughter.
This place is good right at 12:45 they called for Ed
Went and bought a pop and came back and Ed was finished.
On the drive home he explained how the day was
After they told me to go to the waiting room Ed walked to the surgery room and he laid on the table in a very cold room the nurse Kim covered him with heated blankets and in came the doctors. Three of them, they all huddled and went over who Ed was and what they were going to do today then they got started. They cleaned the area of his right neck and then applied a towel with sticky one on side and completely draped the area of the jugular. The doctor gave ed a shot in his neck area to numb his neck ,Then this long wire about 40 inches was inserted. The nurse would ask him how he was doing and she would give him another shot of pain meds if he thought he needed it. This was done at least three times. Ed said he could feel the pressure tests but not the biopsy part. He did say he could tell they were working on his right side. I drove all the way back home and he only mentioned that his neck was sore and he was tired and hungry.
Left work half a day to take Ed to strong memorial hospital for a repeat of the esogial test. The one he said he would never repeat. Tis time I will stay in the room with him. Well we got there at 2 like the appointment said and they called us into the room at 2:30 Ed said all along that his appoint ment was at 2:30 so it turns out it was aplenty lay. At his time I go in the little room with Ed and Rodney was his nurse again we ask why the doctor wanted the tes trepeated and again Rodney tells us because he found an amnoramalliy on Ed's swallowing. I asked why they couldn't send the first test to Cleveland clinic and he said he didn't know to which I said we'll I think you guys must have done something wrong or you would have some kind if report to send. Rodney said that doctor ula didn't want to send a report until he was certain what was wrong. But I just didn't believe him. Haha. He acted like he wanted me to leave the room as finally said are you staying and I said yes so I took his chair as he moved to the stool. This time he fastened a belt around Ed and Ed said he doesn't remember that rodney said it was not that important but funny he used it this time. Also he had lay down on the bed and last time Ed stayed in a sitting position. I still think they are covering up for a bad test and don't want to admit it. I get really pissy when some one does something wrong and they just won't own up to it. So now that test is finished and we will wait for results. Always waiting it seems will be the pattern of the rest of our lives.
I did go last Tuesday and have my blood drawn but no results just again still waiting. We looked online under mychart and saw Ed's results the only good news there is the doctor wrote a note to state there is no fibrosis or alpha 1 present we already knew he didn't carry the alpha 1 gene but the not scarring part was nice to read. Ed will call that doctor on Monday and they can talk about starting treatment and how they think it will work for him.
Now today is my day "mother's day" my younger sister, Charlene, and I are taking mom to dinner in Batavia then we are
Headed to the casino for an hour or so. The weather is cool and there is much todo on the farm but sometimes I just need my family's attention. I do with I would hear from one or even both of the boys but I will have to settle for andrea and Jessica. Jessica has been added to my heart and she has a lovely, beautiful, nice little girl. Alivia is one and walks and talks and sure loves her Grandpa. Ed feels wonderful when he hears her little voice hi grandpa or bye grandpa, I love you.
Ok off to Cleveland again in August 26&27 before we went Ed stopped with the darvoset a few weeks so it wouldn't show on a piss test and guess what they didn't give him a pee test go figure
Well same stuff all over again but this time dr overset didn't give him a score and we did meet with the surgeon. The surgeon was interrupted twice and left us for phone calls and he had another when we were almost done so he rushed us. He felt the hep C wouldn't be a problem. And he talked about not being a good candidate for making the lung transplant list as emphazima. Is a slow progressing and that would put him towards the bottom if a list. Then he chatted about receiving a single lung from someone who only needed one lung and then they would have an extra one laying around. We didn't get to ask any questions about that as he poo pooed us at the end. I asked would he still stay on the list for another lung and he said we would be lucky to get one chance and two don't come around often. Really sounded depressing. I get so stressed with going to Cleveland. I wish it was over with they should be straight with us if they have no intentions of a transplant then tell us as this every three month shut is wearing me out. Also, in the nurse appointment they said Ed needed the hep A B shot again as it didn't take. I have never heard I'd that. Also I got tested at home and I do not have hep C
Haven't written in awhile and thought I might. Went to Cleveland November 26 all day appointments. Appointments went as routine and again no pee test oh well at least we know Ed was a good boy. Met with the liver doctor and he said Ed's liver looked great and no sign of scarring and that he was going to give his ok for a transplant and we would worry about the hep. Afterwards. He felt Ed could benefit more from a transplant than not. So we were give t he green light to proceed. Well here it is December 28th and we have heard nothing. Ed is feeling tired and is having a difficult time breathing, maybe it is the cold weather and Christmas, he is being a trooper about it all but I sure wish he had a bit more energy. He seems irritated all the time and it is depressing for me to see him this way.
12/30/2013 some really bad dreams last night same scene as before with the water edge on our property and an island to the left with woods off to the upper right. We were out on a flat boat finding Shelter under some long bridge first time I dreamed of the bridge other times I dreamed of getting out boat stuck in the short way between us and the island. But this time the long flat boat was falling apart and Ed slipped and his oxygen tank took him under so the had to let the oxygen bottle go to the bottom so he could get back on the breaking boat. I dove for it twice but couldn't find it, I told him to just lay still on the remainder of the boat and I would swim home and get more oxygen. I swam away and got home grabbed a life jacket and oxygen and swam back he was laying face down in the water I yelled no you can't leave me now and not this way. I dragged him to shore with the help of someone and gave him CPR and he started coughing and I woke up sweating. What a horrible dream. I don't want to ever lose Ed omg I love him more than anyone I have ever loved. Deeper as he is my true soul mate. You we are to two of a kind and fit so perfect with each other. I don't want to tell him about this dream nor do I want to think about it but it keeps getting into my thoughts I hope I am never sorry I didn't quit work as soon as I hit year 20
January 28 Ed still isn't feeling better after predisone and an antibiotic so Tuesday morning I took him to medina hospital for a chest X-ray. We heard nothing all day so Wednesday I call during lunch thinking they would have had plenty of time to see the X-ray. Well dr stahl's office says they haven't seen the results yet. I said why not should I call the hospital and have them resend the results. She got a little attitude and said she could check with the hospital and she checked and said they now have them but Ron hasn't seen them and she would have Ron Call Ed as she said she couldn't tell me anything because of the hepa law. Anyway they did call Ed and said nothing really showed up but Ron ordered a new script.
Sunday now 2-1-2014 no improvement so Monday morning I called Ron and he said call dr lee but Ed should be seen today and he needed to go to the ER if dr lee couldn't see him. Well called dr lee and he said the first he could see him would be Thursday and we would be better to go to the ER
So we left the house just after 10am and we are sitting in the ER room at 11:55
2-4 now got a room in cdu clinical decision unit 99
Dr Cala is his doctor with dr kanaparty the head of the dept doctor. Left lung completely filled with bloody mucus and bottom of right lung not moving much oxygen. Room is with a curtain but at least we don't have roommates. Our nurse Jenn is really nice in fact all of the nurses here at rochester are nice. Nebuliser every four hours and antibiotics, mucanex, stool softeners, percotset zanax prendsone think he is getting the medicine has to offer he had better get better. Ed still plans on going to Cleveland clinic
Well downhill now moved to a place that reminds us of an old ER. We are moved to a place that reminds us of an old er room. We have our own space with a curtain for a door but we must leave our space and walk past the nurses’ area to use the bathroom. Ed is still on an iv and meds, nebulizer, and of course oxygen. The oxygen is now turned up to 6 constantly hoping to turn that down soon. Blood pressure is a bit high but ed thinks that is because of all the noise in the place. I left to go home check on the dog, shower and sleep. One hour drive both ways and I left at 1am and returned at 10am. The doctor had already been in to see him and they said they would be moving him upstairs today as this place wasn’t the best and he sure couldn’t go home until he was better. They were able to turn the oxygen down to 3 when he was resting in bed. We pack up everything and we are moved to the pulmonary room. We now have a room with a roommate and we are by the window. There really isn’t’ any more space here and downstairs I had a recliner where I was able to stay the first night with him and quite late the second night. Well, this is not good he has to wait for a very busy nurse in order to use the bathroom as they don’t want him using a long hose as the roommate has a tripping problem and the bathroom door is right by the roommates bed. A person visiting that man has to completely move themselves and their chair just so ed can get in there. The nurse carries ed’s oxygen and stands outside the door. This is unacceptable to Ed. The nursing staff says they are moving us to a room down the hall where he will have the bed by the bathroom door. Ok they move us our new roommate is sleeping or should I say comatose and moaning loudly. The new nurse we have is a Bi**h and she insists I leave his room at 10pm how ridicules as I am very quiet and do things for ed so he doesn’t have to call them. Ed is getting worse he is now coughing up huge chucks of blood and his blood pressure is rising. His heart rate is elevated at 113 to 120, Ed doesn’t want me to leave him. I move to a waiting room and every little while sneak back in there to see him. There is no way I can sleep where they send me. Each time I sneak in to see how ed is doing his nasty nurse comes right in and reminds me I must leave. Ed is paranoid and complains to me that he is scared. He is scared of that nurse and says she is constantly asking and giving he man next to him morphine. He is worried she might do something to him, like an angle of death is how he feels about her. I tell him I must go home for a few hours and I will be back by 6pa to sit with him. Against his wishes I leave at 3am and head home. I shower quickly and lay down to sleep with the alarm set for 6 as I figure I can be back with him by 7:30. As I am falling asleep my cell rings and it is Ed telling me to come get him. He is in a panic mode and says he will rip out his iv and call a taxi if I don’t come. I assure him I am on my way. As quickly as I can I get out of the house and head back to Rochester. When I get there I can see he is in a bad way. He has no color in his face and is now coughing up dark blood. He is having an asthma attack based on the cleaning stuff the staff is using on their hands. The noise is intolerable and he hasn’t slept in over two days. The room is right next to the main double doors for the wing and every person who enters uses the button on the wall as the door don’t have normal handles on them. Then the doors open completely and shut with a loud bang then the doors reset back where they started with another loud noise. The doors are constantly opening and closing. In a five minute random period of time I recorded them opening and closing at least six times. That is more than once a minute. I now have had enough thinking for sure ed was going to die if these conditions continued, I asked to speak with the head nurse. I told her the situation and that ed needed to be moved either back to the room away from the bathroom or to a private room. His condition is getting worse since he has been brought to this floor and he and I were about to leave and they would be responsible for his death. She told me there were no other rooms but she would see what she could do. An hour later nothing was said or done again I asked to speak with the head nurse and told her I would like to speak with a patient advocate and a social worker asap. I was given a number to call. I went back to sit by Ed and made a call in which I left a message to our room number and my cell number. About 30 minutes later the patient advocate lady came and talked with me. We explained to her about the reaction Ed was having to the hand cleaner and how the nurse just said well I can give him clean pillows. When she put the pillows on the bed and handed me the pillowcases I told her but these pillows are wet. To which she said well I just wiped them down and they will dry when you put the pillow case on. I told her she didn’t understand that the cleaner was making ed have an asthma reaction on top of his already compromised lungs. So what did she do? She took off the pillow case and waved the pillows in the air to dry which was stupid on he part as now he started coughing and gagging again. I really told the patient advocate that Ed needed to be moved as he was not getting better in this room and he needed. There is going to be a lawsuit at some point if this continues. She said she would do something and we would hear back within the hour. Ed’s daughter arrived for a visit. She had trouble finding us as she went to the wrong hospital first she lives over two hours away and was exhausted worrying about her dad and then getting lost. Once she was comfortable with her dad I left to go eat, telling her if the doctor showed up to please call me as they have a way of showing up once I leave. Of course they did, when I arrived back into the room there was four or five doctors surrounding ed’s bed there was nowhere to stand literally. The doctors where discussing Ed’s health and couldn’t understand why he wasn’t getting even a little better with all the med’s they were giving him. The doctors were upset about the room conditions as the noise and the fact that ed has not slept any. Ed needs to rest in order to get better. After deciding to up his prednisone and change his antibiotic (again), they left. Within five minutes of them leaving the head nurse of the whole hospital came to speak with us and told us they had some options in which to move Ed. Ed’s doctor wanted him moved to a quieter room so he could sleep. They told us the man down the other end was leaving and as soon as he was gone they would move ed there. She returned a few minutes later to tell us we could be moved to a private room but that would be in another three hours. Ed told them he would rather move now as he didn’t want to lose the ability to get moved down the hall. She assured us that there would be a private room by 4pm. We agreed to wait. Ed was moved to a private room at 3pm and they had taken the time to wipe the room with soap and water after using the cleaner that the hospital uses. It was like a miracle that ed started to get better almost immediately. Between having his daughter there and moving to a different room and knowing I would be able to stay right by his said he began to improve. Day 5 wow took a lot to get to this point both ed and I thought he was dying and this would be his last hospital room. The doctor did tell us later that day that he was finally improving and perhaps he could go home by Monday three days away. The doctor also told ed to cancel his Cleveland clinic appointment as there would be no way he could make it, which we did. Ed improved greatly over the next day and so Sunday I told him I was headed home and would shower chance clothes and be back. I had slept quite nicely lying next to him the night of day 5 and 6. Of course as I was getting out of the shower he called me and said they were letting him come home. I said I was heading back asap. He called twice more as I was driving because they wanted the room. The snow was bad and driving was slow. I got there in an hour and 10 minutes and they wheeled him out the door as I drove up, and away home we went.
Cleveland was postponed a month. Our visit to Cleveland Clinic was March 18, 2014, wow we have been coming here a long time. We didn’t leave until noon on Monday as I had to stop at the Genius store because I cracked my ipad. After a 45 minute visit there and a very happy Betty with her new ipad we were back on the road. We checked into the hotel around 5pm. Our morning didn’t have to start early so we left the hotel at 11am. Appoints ran smooth and we spent our breaks in the carlie building. Lab, xrays, cat-scan, 6 minute walk all went well. Visit with the doctor we heard the same thing we have heard many times before. We need to move ahead and get you on the list. The doctor said, “I will look over all of this with a fine tooth comb and make sure none of your tests need to be repeated, so we can get you listed.” Well here it is April and we have heard nothing. This waiting game is so tiring. Ed still isn’t back to feeling like he did before he had pneumonia but we will keep positive. He now needs 6 to 8 liters of oxygen when he moves around but can turn it down to two at rest. We have purchase a few different adjusters to see if we can make that a bit easier for him.
Here it is July 2014 and we haven't heard from Cleveland Clinic. Ed called and Suzanne at the clinic, she said she would schedule us but she thought we were waiting as he wasn't going to be listed. This was news to us as last time they made it sound like it was dire that he get new lungs. We went to Dr. Wahl for our appointment in rochester general hospital. After talking with him he gave us his opinion of a transplant. He said he would rather Ed put it off as the operation and all the follows care would put him in a place that would be worse than what he is off now. Like he isn't sick enough. We are torn at this point. Dr wahl said he would rather see Ed on predison daily than all the transplant meds he would need. We talked about the risk of the transplant which is complicated due to his Hep C.
After our appointment in rochester we had lots to think about. We talked and decided to cancel our Cleveland clinic appointment. There are new drugs on the market to treat hep C so we are going to wait. Ed being healthy and with me is better than dying on the operating table. Ed has a few good hours in him every day. Some days more than others but we will keep at it.
Went back to Cleveland clinic may 27, 2015 for pre-lung transplant follow-up, routine visit again we saw a new doctor this time it was Olufemi Akindipe MD. Things progressed just like every other time we have been there. The doctor acted like Ed needed new lung tomorrow and told us the same story that they all meet on Monday and we should be hearing from them soon. This time we did see Doctor Carlos Romero-Marrero a gastroenterologist, he told Ed there was a new drug to treat his hep C and as soon as he got insurance permission Ed could start the 90 day drug. Well back home and a few weeks have passed and we have heard nothing. Then we get a call from dr Romero and he wants Ed to start the drug Haroni. Well good news after only 30 into this treatment Ed's blood work already came back negative for hep C. Two follow up testing a after completion and again in January of 2016 still negative.
Well here it is last day of February 2016 and nothing really has changed. We went back to Cleveland clinic in September and we are now officially listed. We had to sit through two very boring classes on "What it's" and nourishment. Nothing new there if you read all the literature that there is on transplants. We had a new doctor again this time and now a new nurse. Nurse Laura Kemp, and Marie Budev DO is our new doctor. Well this visit was another step backwards. Now dr Budev is telling us Ed has a Eantibotic and he will need a local donor. She sort of told us this as we were having our last appointment of the day and it really didn't sink in so we could ask educated questions. She also ordered Ed to repeat his right hearth Cath. and colonoscopy as well as a sleep study. We have made an appointment for the colonoscopy and are trying for the hearth Cath. The person on the phone won't just make an appointment even though I emailed her a copy of the scrip she says she needs to speak to the issuing doctor. Like omg can't they just make an appointment. We have follow up appointments in Cleveland the end of April.
