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….