Happy New Year-A little behind


Just a quick update. I have a cardiologist appointment this Thursday. I hope he takes me off the crestor. Co-pays $40, upsets my stomach and I have developed some sort of a rash on my forehead. Having more frequent angina and stays for longer periods of time.  Battling a sinus infection and bad cough now. Hope he gives me an antibiotic and cough medicine.

Hope all is well you everyone.



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Friday, 12/21/12 Happy Holidays Everyone

Well, it has been a busy summer and end of the year. I have had several followup doctor visits. I was having pain in my shoulders and received cortizone shots in each and they have been fine since. I have a bone spurr in my right shoulder and the doc told me if the shot didn’t help, surgery was the next step. Six weeks in a sling and then rehab. It would be a year before I really got full use of it back. Not an option now for me. As long as the shots work, I’ll settle for that.

My aunt and uncle were sick in August and my brother went up there and spent several weeks with them until my uncle got out of the nursing home. They are doing much better now. I was up there in October to visit family and friends. I had a nice time but while I was up there I developed severe leg cramps and foot contractures. They are very painful. At my cardiology appointment the doctor changed  my lipitor to crestor. He said the cholesterol drugs can cause the cramps. It has been about 6 weeks and no cramps! My last card. appt. my pulse rate was up and he doubled my metroprolol med. Pulse rate is down. My next appt is the end of Jan.

I will be working the holiday, tomorrow though the following Friday. When you work at a hospital you expect these things.

Just a quick update. I will try to be better next year about writing. Take care all and have great holidays. Don’t forget to be thankful for what you have, alot of people have next to nothing. God bless.


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Friday, July 13,2012 I’m back!

Hi all. I’m sorry I didn’t post earlier than now. I left you all hanging! On the last post I had just found out that my transplant doctor refered me back to the coagulation specialist. After waiting weeks for an answer from them, they passed the buck! I was absolutely livid! All this time wasted when they knew they should have said that up front. Now I am worn out and so disgusted with the health system. I called my family doctor and scheduled an appointment with her, just to talk. So, I go to the appointment and just couldn’t stop talking about how I was being jerked around by everyone and no one wanted to take responsibility for taking me off the coumadin. I was sorry I had wasted her time, but was just giving up on this situation. Forget the heart stenting and just keep me comfortable…I wasn’t having anything else done. What was I paying theses doctors for? It was just too much stress trying to get all these medical things done. And, I was lucky I was in the medical field, to sort of know what was going on. She listened without interrupting me and when I was finished, said, I can’t promise you any results, but I will try and help this situation along……..

The next evening she called me with a plan!! She had talked to the interventional doctor and the coagulation doctor. The 3 of them came up with this plan. I was to have a D-Dimer test done. My family doctor knew what to look for in the results. If they were in a certain range, I could come off the coumadin and start the plavix for a month. At the end of the month, I would be retested for the D-Dimer. If it was still in a certain range and I had no unusual bleeding or problems with the plavix, I would be already for the heart stenting. You can not believe what a relief it felt like having a solution to the coumadin problem. I felt like finally someone was working with me, and not just taking money from my office visits!

Long story short, I called the cardiologist and told her I was off the coumadin, on the plavix and ready to go for the stenting. Now the problem arose that I was flying out to Nevada and California for 10 days on vacation, that had been planned last fall. Tickets were brought, arrangements made to meet my brother and sister in law out there. The doctor knew this all along. Not enough time to do stenting before vacation. So she tells me to call her when I get back. Well that would be end of May. So I hung up and started to think about it. Why not schedule it now? You don’t just call up and say you want the stenting done the next day.

So…I called the heart center myself, explained the whole thing and the nurse said she would get back to me in 2 days, if not call back. She was going to send the doctor an email. Well, about 3 hours later she called me back and said she had talked with the doctor and they had scheduled it for June 19th. I was to come in on the 18th for pre-op work. I called my brother and he made arrangements to come out and stay with me a week before the stenting and 2 weeks afterwards,

We went on vacation, Las Vegas, Virginia City, Carson City, San Fransisco, and back to their house in Simi Valley. Had a wonderful trip. Came back and got sick..pneumonia/bronchitis. For 3 weeks I was so sick and weak. I had 1 week left before the stenting and somehow rallied that week so I was able to it done.

They ended up putting 4 stents in, 1 in the LAD, 2 in the circumflex and 1 in the left main artery. They also had to use both femoral arteries, so had to go to ICU and stay overnight. I had 2 hematomas in the left groin and boy were they sore. I was black and blue all the way around the thigh and up part way on my lower abdomen on the left side. 

Next problem, they wanted to send me to the floor before discharging me the next day. It was protocol. No one went from ICU home. I said, watch me. They did release me the next morning, but we waited almost 5 hours for paperwork. I was really getting agitated. Finally we got the wheelchair and got out of there.

Next problem, I could not get discharged unless I had an appointment with the cardiologist who up to this point is not interested in helping me. (Forgot to mention that her office called me 1 month after my vacation, to schedule an appointment with me to set up the stenting. Told them I did it myself and was going the next day for it!!) So when I got home called and canceled the appointment. The next day the doctor calls and says she needs to see me as a follow-up  for the heart stenting. I calleed the office back and told them I was using my family doctor and interventional cardiologist. I no longer needed her services. The secretary from her office called me again a few days later and left a message the doctor wanted to see me. By now I was getting irritated. I called the office and spoke to the office manager. She wanted to know why I didn’t want to see the doctor. I told her I thought she had dropped the ball with the coumadin issue and I just had no faith in her that she was working on my side. She thanked me and I haven’t anything more from them. Thank God.

I went for my 1 week checkup since the stenting with my family doctor. I had lost weight and was feeling tired and no strength. She gave me another week off from work, and it must have been what I needed. I slowly started to regain my appetite and some stamina. Yesterday I followed up with the stenting doctor. He was pleased, but recommended I do cardiac rehab for 12 weeks , 3 times a week . Right now I’m trying to get that scheduled. I go back to stenting doctor in 3 months and return to family doctor on the 27th of this month. I believe I am in good hands now. Will try not to let so much time pass before I update again.

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April 15,2012 Sunday Wow It Has Been A Long Time!!!

Gosh, I had no idea that I hadn’t written on here in soooo long. You probably all thought I died!! Well, I’m still here. I guess to try and pick up from when I left off in July of last year…..it was a very bad summer. Very hot and very humid. I couldn’t do much outside, except keep the lawn mowed. I’d have to go out early in the morning to get it done. Stayed in the ac all the time, except to go to work, come home and mow the lawn. I was having alot of trouble upon exertion breathing. and was tired all the time.

So, I thought I can’t wait till cold weather! Wrong, it made no difference. I had an appointment with my transplant dr in November. Complained to him about the breathing, being tired, etc. He didn’t know anything except that I would never get the Hodgkin’s Lymphoma or MDS again. He did finally order a pulmonary function test and he said everything was fine, the number they look at after transplant was like a tenth higher even tho the O2 sats were like half of the value after the transplant.  I went home discouraged. Well, I got real angry. Why was I going to him then if my problem was corrected? I waasn’t getting any help for my current problems. So I decided to go to my family dr.

In December I went to my family doctor. Complained about all my problems. She listened and said, here’s what we will do: Tested my thyroid and decreased my dosage and scheduled an echocardiogram. She said that maybe the heart was weakened or the chmers may not be pumping efficiently. So had the test. Good news is that the heart and valves/chambers are strong and in good shape. Back to the dr who refered me to a cardiologist. The cardiologist wants me to have a special MRI that will look at the heart. I said, hold it right there. Can’t do that unless you put me out. So, she says that would give us the best pictures, but we can do a medication induced stress testand then if that shows something a cardiac catherization. Note here: I can’t do the treadmill stress test, as I can’t stay on there long enough to complete test. Did this, or tried to do when they diagnosed me with all the clots in the chest around 2005.

Anyway, I was set up to do the stress test and the dr called and canceled it. The insurance wouldn’t pay for it because I am allergic to the dye. So, ended up having the cardiac catherization in early February at Duke. Anyway, I won’t explain the whole ordeal, but you are awake but medicated for the procedure. My comment is: ” It is so cold in there!!” I could see the pictures as they treaded the wire into the arteries. Pretty cool! Anyway, the results were 3 major blockages on the left side…the left main artery 80%, the left ascending (lad) 70% and the circumflex 60%. Now they stent anything over 70%. The 2 arteries, Lad and circumflex branch off of the left main artery. Blockages in the left main is at the beginning of the artery, the other 2 have blockages sort of in the middle of each. The LAD goes from the top chamber through to the bottom chamber. The circumflex artety goes to the outside of the heart and down. All very important arteries. After speaking with the intervantional cardiologist, (he did the cath), he refers me to an open heart doctor/thoraic surgeon.

More tests, and more discussions. The stenting wasn’t done at the time of the cath, like they usually do, because the dr felt with the blockages I had, the open heart bypass surgery would be a better fix and last longer. Did I mention that this narrowing of the arteries was from the radiation therapy I had in the beginning in 1989 to save my life. Interesting isn’t it? Anyway, the surgeon said he wanted a special CT scan of the chest. Sonmetimes when you have radiation to the chest, it can sort of melt things together, making surgery difficult as you have to peel the layers away to get to the heart. The sternum in cut up through the middle and then opened outward. The next thing he wanted to know if the mammo artery in the left breast was okay as they wanted to use that artery, rather than a vein for one of the bypasses. The third thing he wanted to know was how the vascular system was inside the chest. As I mentioned before, my ports from the chemos and transplant plugged up causing my chest to be pretty much a mass of clots. The body, being the wonder that it is, made collateral veins through out the chest, rerouting around the clotted veins to supply new sources for blood flow. Not as good as the originals, but enough to keep things up and running, although not at full capacity.

So, I have the CT scan. I was also scheduled for a vein mapping session, to find the best veins in the legs to use for bypass. The dr ruled out using either the radial or ulna arteries in either arm. If they took either artertery, they was not enough blood supply to the hands to supply adequate oxygen. They said they was a good possibility if they took those arms I would lose the hand. Anyway, I got a call from the dr office the day before the CT to see him after the scan rather than a week as scheduled. The vein mapping had been canceled also. I’m thinking, somethings up. Had the CT scan and saw the dr later that day. I came all prepared with my pen and notebook to take notes, as I couldn’t find anyone to go with me. Didn’t need the pen, notebook or friend. This I would remember…”I won’t operate.” Let that sink in a moment..cuz that’s what I did. Kind of zoned out for a second I think…tuning back in ti hear, “It is too risky.” Now you have my attention! Did I miss anything? CT scan showed the left mammo artery closed, no good to use. The chest pretty much fried from the radiation, but the sac around the heart good, not scarred. The subclavian vein on the left side compromised with clots from the dvts from before. Many, many, many collateral veins in the cutting field. A huge vein running perpendicular to the sternum. Many issues and thoughts of how well would I heal back together from the cutting…etc. He told me I would probably bleed to death before they could even get to the heart. He felt I should go back to the interventional dr and have some stents put in. He had discussed what he had found with him and my cardiologist back home. He was sorry. A very nice man and I appreciate the fact he told me the truth and didn’t try it for the money for Duke. All these doctors, technicians, people manning the reception areas were very respectful and kind to me.

So, I go home and wait for the cath dr’s office to call me me with what to do. Finally a good week after the meeting with the surgeon, my cardiologist at home calls me and wants me to come in and see her. I said what for? I’m waiting for the cath dr to call. Well, that’s what she wanted to talk to me about. I said you’re talking to me now, what’s up? Well, he had told her he wouldn’t do any stenting till I came off the coumadin. She wanted me to find out if it was okay to come off it. I would be on aspirin and plavix for the rest of my life and couldn’t be on the coumadin also. How am I supposed to find that out? All my records are at Duke, you have access to them…???? I need to make an appointment with whoever put me on the coumadin and ask them. You are the dr, no one listened to me or believed me about my shortness of breath for over a year, I’m sure they are not going to tell me I can come off the med. My transplant dr didn’t know anything in November, I’m sure he doesn’t know anything more now. Well, that’s what you have to find out and then make an appointment with me and I’ll setup the stenting. Wait a minute, I need more information about this plavix, I’m a lab tech, I know something about platelets and clotting….end of conversation.

So I try to get a hold of my transplant dr to ask him since he put me on the coumadin. 1,2,3 calls to no avail. Sometimes I get the answering machine. Sometimes I get a real person, his receptionist, his nurse…. Finally one afternoon about 2 weeks from the start of this quest, “HE” the transplant dr calls me. What’s the problem??? So, I go into the whole story. His answer,  “I take all 3 meds. Been on them for 4 years and I haven’t had a problem.”  Said he’d look at my records and get back to me. Why do we patients believe everything a doctor tells us? Is because they have gone to school for many years training in their field? No, because it is just common coutesy if someone tells you they will get back to you, they will. 10 more days go by, no news. I call my local cardiologist and tell her what has been going on and can she try getting a hold of him since she is a dr as opposed to me a lowly patient? No, make an appointment and go and talk to him. Now, maybe I am stupid, but is he really going to be able to tell me I can come off coumadin by physically seeing me? I could email him a current picture. Well, she ticked me off. The next day I call Duke again and talk to the transplant dr’s PA. Very nice woman, very helpful during the transplant and afterwards. She asks him and calls me back…they think I should go see the coag dr at Duke!! Now why in Gods name didn’t they tell me that a month ago???

More to follow….


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July 29,2011 Friday Long Time No See

Hey all,

I bet you thought I won the lottery and took off to parts unknown! Well, I’m still here, just been busy with life. I was real sick with a sinus infection that developed into the beginnings of pneumonia. I haven’t been that sick since before the transplant. It took about a month to really get over it.

My brother and I went back home for our nephew’s wedding. It was very simple and very nice. The food was great and the weather cooperated. Got to see alot of friends from the fire department where I was a member of. The good news was that they will be having a baby girl in November. They have a name picked out, and I just can’t remember what it is.

I saw all four of my nephews and they are doing well. One nephew has the cutest kids, a girl and a boy, 6 and 3. Very polite and not afraid to talk to you. Another nephew is getting his doctrate in music and we were able to meet up with him in New Jersey.

It has been horrible down here with the heat, humidity and no rain. Lawns and crops burning up in the heat. The roadside farm stands are just as pricey as the grocery stores. I’ve only had sweet corn a couple times.

My brother had his MRI earlier this week. I’ll talk to him the weekend and maybe he’ll have some news.

Work is the same, busy and slow.

My checkup with the transplant doctor is August 11th. I’ll catch you again after that. Stay safe and cool.

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Tuesday, June 14,2011

Hey gang,

How have you been doing? I’m doing ay now. I had been terrible sick, sinus infection and the beginning of pneumonia. I have not felt that tired and terrible since before my transplant. Thank God, the antibiotic and cough medicine worked.

It has been very hot and humid down here. The lawn is starting to dry up already in spots. We have had a good half inch of rain in the past 4 days from thunderstorms in the evening.

A month from today is my nephews wedding. Looking forward to going to that. Hope it is not too hot and humid.

My brother is doing well. He says he feels well but, still has some neuropathy in his feet. l with time that will go away. He will be having his MRI in August and then hopefully, get the green light to get the port taken out. His last chemo was in December.

We have been busy at work. Hospitals are always busy.

I have a few tomato, pepper and squash plants. They have not gotten any blossoms yet. I never see any bees…I wonder how they get pollinated? I had a hill of cucumber plants, but my male cat decided to use it for his personal use. I really have no hopes of anything giving me any produce.

That’s about all for now. Just wanted to stay updated with you. Oh, my INR is finally 2.7!  Yippie!!

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Tuesday, May 10,2011

Hi folks,

How’s everyone doing? I’m doing ok. Went to that ballgame ans enjoyed it. We ate at a pub/restaurant nearby and also had hotdogs,sodas and popcorn at the game. Got my picture taken with the Bull mascot! I’m just a kid at heart!!

My brother is doing well. Enjoying his retirement. His plants are coming along ok. It has been hot out there.

I got my state and federal tax returns back and upgraded my electric in the back bedrooms and furnance/ac to a circuit breaker from an old fuse panel box. Lined up a guy to pump out septic tank, but when he came he  couldn’t  find where it was. I had several neighbors come over, as I thought maybe they might know as the houses were all built at the same time. No luck. Still waiting to see if the guy who originally built the house will contact me.

I cut alot of brush and some small dead trees and dead azealea bush around the house. My next door neighbor came and cut up the fallen tree from the neighbors property. I got that all cleaned up. I cleaned out the gutters and got the push mower and weed whip started. The pulling on the cord to start them bothers my shoulder, so I have to be careful and not overdo things.

I went to a wake for a former boss whos 18 year old son committed suicide. No reason, no indication anything was wrong. What a waste of a life.

My plants are doing well and I need to get the cukes and zuchini in the ground. I think I am going to leave the tomatoes and peppers in the single pots I have them in.

We have gotten quite a bit of rain the past couple weeks. Thank God we just had bad wind and rain a couple weeks ago when the tornadoes hit south of us. They said 30 tornadoes hit here in North Carolina. Very scary.

Guess that’s about all the news. Hope you all are enjoying the spring. The time is going so quickly. Take care.


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Friday, April 15,2011 Good News

Hi all! Good news from my brother. Colonoscopy report is normal. They did take 3 or 4 small polyps out but everything looks okay. He doesn’t have to have another one for 3 years. His MRI is set for July. He is feeling stronger every day. He still has some neuropathy in his feet and hands, but some improvement there. He has been working outside, so is enjoying that.

My appointment with the transplant doctor went well. He is very pleased, said I look good. Noticed that my hair seems to be filling in more now. We talked about weening me off the evoxac and prednisone. No more rinse for the dry mouth. That has been doing well..no dry mouth. I go back again in August. Will have the usual blood work and a chest xray. My INR was 2.2, so no change in the warfarin.

I’m going next Thursday to a Durham Bulls baseball game with a couple girls from where I work. Should be fun.

Hope all is well with everyone on here. Take care and catch you soon.


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April 4, 2011 Happy Spring


Well, just a couple updates. I had my GYN appointment and everything is fine. The doctor was able to do a painless pap smear and all was negative, including the HPV testing. She told me I was “normal” and the narrowing of the canal is from going into menopause so early and no sexual activity. It has nothing to do with the GVHD that I was led to believe from the family doctor and transplant doctor. I guess that is why everyone has a specialty. Anyway, don’t need to have another PAP for 3 years. Yea!!

My brother retired on March 29th. They had a nice potluck for him and lots of gift cards.

My brother had his colonoscopy on March 31st. Everything looks good, although they did remove 2 polyps. No news back on that testing. He will have an MRI later this spring and check things out. I am curious about the spots on the liver. They also haven’t mentioned the chest xray, so I can only assume that it was ok.

He and I are flying back home in July to be at our nephews’ wedding. He is the son of our brother that passed in June 09. They are having it at home, so should be nice.

I didn’t get to Washington, DC last week to see the cherry blossoms. My furnance went out and I also had electrical problems with the fuse box. The panel for the furnace finally came in last Friday, and they put that on. It was nice to have heat again after 48 degrees in the house for almost a week.

The electrician came on Saturday and transfered the fuse panel to circuit breakers. Hopefully that will end any problems with the furnace and the air conditioner in the future. Expensive, but needed to be done. Now I have plumbing things to be fixed and am waiting for a call from a guy. Hope that won’t be too expensive. Septic tank needs to be flushed out and painting outside.

I got 12 trees from the Arbor Foundation and need to get them in the ground somewhere. They had to soak overnight. I’m going out to supper right after work, so may be able to get them in tonight. They are small, so won’t require alot of digging.

That’s all I can think of right now. Hope you are having a good week.

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March 12,2011 Saturday


I wasn’t going to post until after my GYN appointment, but I had to go back to the orthopedic doctor this week. My elbow has become a real problem. Elbow bursa swelled up to the size of a small plum. Hot,red and sore. Saw the dr on Wednesday after an hour and a half wait after my appointment time. He pulled as much of the blood out of there as he could…over 25ccs. He couldn’t get it all. Gave me antibiotics for 7 days. Keep the area wrapped with an ace bandage during the day and ice it 3 times a day for 15-20 minutes. My elbow felt great on Thursday, but has since filled back up again, although not to the size it was yet.

The doctor told me that he did not recommend surgery as it was difficult to recover from and also it was not a guarantee that the swelling would not come back. So his advice was to live with it. He did not want to draw any more fluid off the elbow as it was more of a risk getting an infection from the needles.

So, we wrap, we ice and we live with it. I am so tired of being shipped from doctor to doctor with all these issues.

On a good note, I’m going to the beach in 2 weeks for 2 days. Two of my closest friends and caregivers are going also. We are just gonna hang out, get some sea food and go to the aquarium. I have never been to this aquarium, but they say even though it is small, it is nice.

In July I’m going back home for my nephew’s wedding. My brother from CA is flying out also. That should be nice and I should get to see a lot of the family. Hope it isn’t unbearable with the heat and humidity.

Okay, check in with you after the 24th, Have a good month.


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