Hi Everyone
Just wondering - what have you found to be the worst thing about being sick?
Kind regards,
Dkel
Well, how much time do you have? Right now I am fighting a GI bleed with Alphanate infusions which my local Hospital keeps on the shelf for me. For the past two months I have had several serious bleeds and as I type this on Saturday, AM, I am sitting in the Hospital Lab waiting for an Hgb and hematocrit test which will help me decide whether or not to get an emergency admission to the Hospital for blood transfusion or transport to a major Hospital for a dicey double-balloon endoscopy to cauterize an AVM that is the probable cause. The paperwork necessary for this will require off-duty Mds to talk to Hospital docs and arrive at a plan of action. The possible actions range from a blood transfusion, upper GI endoscopy to eliminate stomach AVM source or the trip to the big city Hospital. A pill endoscopy a couple of days ago showed no big AVMs so the site of the bleeder is up in the air. Keeping a stiff upper lip during all this is requiring a little effort on my part.
I am still planting perennials in my flower garden and am in the process of trying to learn Linux programming language, so I still have positive thoughts, but I am putting off kayaking until my Hgb gets above 10.
John the elder, age 73- acquired vWD six years ago
John the elder- back a little bit from the precipice. I could post an exel graph of my Hgb over the past nine days but it is too scary. After going from 16 to 8.4 a few weeks ago, I crawled back to 11.2 g/dL, nine days ago. My normal non-bleeding range is 14.5-16 g/dL. If you lose half your hemoglobin you will probably go to half your Hgb, providing you do it quickly. My body, if it has any iron in it, makes Hgb at about 0.6 g/dL per week so if I lose it slowly, I have to figure in production versus loss. I noticed dark stool on Tuesday, last week. I tested it and it was + for hemoglobin. (you can buy test kits online about $70/100, they are real easy to use and I always have the kit on the window in the bathroom). I called my Hematologist and he set me up in the Hospital Outpatient for Alphanate (factor VIII and vonWillebrand factor infusion). I was on 1000 units a day for three days and got a CBC which showed a drop of 1.5 g/dL. Duh!! I was losing much faster than I was making. So I called the on-call Hematologist and went into the ER at the same Hospital and talked myself into being admitted. This was not too difficult because I am a regular and my records are self-explanatory. I am a ddavp non-responder, (you can get a ddavp response test by comparing the VWF activity before infusing ddavp with the VFW activity two hours after infusing ddavp. The activity should rise sharply to effective levels (50% or more) if ddavp is going to work for you. It does for most type ones, but, alas I am a type III and my VFW went from <10% to 20%, about right for a small scratch or a light nosebleed but not enough for a GI bleed which is what I get.
My on-call hematologist then doubled my Alphanate to 2100 units a 24 hour day. After a few days, lying in the Hospital watching Netflix mysteries on my laptop, my Hgb dropped to 8.4 g/dL. Time for a push-endoscopy of the upper GI including part of the duodenum just below the stomach. Three bleeders were cauterized with difficulty but in that time I dropped to 7.4 g/dL.
Now its time to consider transfusing hemoglobin products before oxygen supplies to body organs decrease to damaging levels,ie Shock. I was on a heart monitor, high pulse rate is an indication of shock starting as the heart beats faster trying to keep the body alive. I was also getting Blood pressure measurements at regular intervals as falling systolic pressure (the large number) indicates insufficient blood in the system to keep the pressure up. That is kind of like seeing the “oil light” coming on in the car. Stop and fix before going onward! So when the Hgb is below 11 and the systolic pressure is less than ninety, increase your self-awareness of things like funny pulse, headaches and dizziness. At this point, you better be in bed with the oxygen thing in your nose as your lungs are having difficulty recharging your red blood cells as they go by. Don’t go taking a stroll down the corridor to talk to the Nurse, hit the call button. I keep my cane with me in the Hospital and it comes in handy for adjusting the privacy screen, moving the furniture and walking if I am clearly above shock levels.
So… the next day after the endoscopy, my Hgb jumps up. Now they had already given me iron infusion because they knew I would be making lots of Hemoglobin, so we all were excited, until after lunch. Then the Hgb started dropping at the same rate as before. The Nurses get a kick out of me because I do things like keep a running graph of my Hgb with time. I do it on my laptop. Its real easy to do, but just a paper diary of your Hgb results in front of you while you and your Doc make decisions about your care is well worth the effort. He is seeing dozens of patients so he won’t remember all the numbers, neither will you. The paper diary or graph is really helpful to look at change and rate of change.
In my case, I think my Hematologists called in one of their buddies from a different practice because all of a sudden a new doctor showed up at my bedside and started discussing my case with obvious concern and preparation. He knew a lot so he must have studied my data. We sat down and talked at length about IVIG therapy.
From my graph, it was easy to see that doubling the Alphanate had zero effect on the bleeding rate. The conclusion was that I must have Factor VIII inhibitors which are attacking the Alphanate as it is infused. The other conclusion was that the bleeders opened up again or that there were more further down in the small bowel. IVIG therapy introduces protein molecules into your blood that overwhelm the inhibitors being made by your immune system. If IVIG could save my Factor VIII than Alphanate could easily help control some of the bleeding by completing the coagulation chain which requires both to be present at good levels. The downside is some 900 mL infusions over several days. The infusions last a number of hours and sometimes induce hives, headaches and other allergic reactions. So…be mindful.
Well, a CBC the next day still showed loss greater than production and the Hgb was down to 7.3 g/dL.I also had a hives attack in the AM controlled immediately by Claritin.
Rome wasn’t built in a day. I got one unit of apherized Hemoglobin. This product has much less anti-coagulants in it than PRBC. Make a note of that if you are caught like I am. Anti-coagulants aren’t a good idea for a bleeder. An hour after the infusion the Hgb was up to 8.7 g/dL. Holy cow!!! Usually a unit of blood only pops the Hgb one g/dL, maybe the inhibitors are being killed off!!The graph now looks like I can continue to plant perennials and buy green bananas!
So if you are a severe bleeder, be ready to share your personal knowledge of your disease with your practitioner. Remember, Doctors PRACTICE medicine until they get it right and if the two of you work as a team you will do better in the long run. Most Hematologists don’t deal with coagulation disorders that often. They mostly treat Cancer. My Hematologists do act together, listen to me and actually double-check what I suggest on their private websites. That takes a little humility on their part but I am better off because of it. I am also happy that my guys ask their friends in other practices to share ideas.
So I hope for a good ending for this episode of my bleeding history and I hope I help you to be more assured of a good life ahead of you.
John the elder
John, you are a truly amazing man, just the kind of character every author wishes to create! I love the fact that you Kayak, plant flowers, keep all of the medical staff on their toes, while moving furniture around with your cane, and learning a new computer language!
Your positive attitude and warm humor surely have taken you far, sorry the last six years have been such a challenge to you, but I admire your wonderful spirit and sunny outlook!
I bet your flowers are beautiful!
Wishing you well,
SK
Guess what folks? I am home, home at last!!!! My PTT is just at the top of the Reference Range (that is really a great thing since it hasn't been there for six years!!!) I am sitting here in my my fun room surrounded by my ham radio and computer equipment listening to the lightning and thunder crash around our log cabin in the woods that my wife and I built from a kit a few years ago. My Goose remembered me and quacked a hello and all five cats greeted me. The flowers need deadheading and my daughter came over and mowed the grass around the flower beds for me.
Now... how did that all come about ?????? My Hematologists switch off Hospital duties to another practice and I got to meet a doctor who is a strong believer in IVIG infusions to treat some autoimmune disorders. At first he sounded like a used car salesman and I offered to split the commission if I said yes, but he insisted that the treatment was well-founded and that I should trust him. and he wasn't going to directly benefit. So, not having much in the way of bullets to fire at vWD and my current GI bleed which was undiminished after EGD and cautery, I said yes. Boy am I glad I put up with three seven hour transfusions of about a liter apiece. I can't tell you what your kidneys think of 1000mL of liquid being added to your vascular system but mine cheerfully put up with working overtime. Then I got the first PTT test back and it had dropped significantly after the first treatment. After the second treatment it dropped again and after the third it had dropped to the Reference Range and my GI bleed stopped. Finally a light at the end of the tunnel and no train whistle blasting away!!!! I will probably need refresher treatments the rest of my life, but I think I should still plant perennials!
Thanks to all the people who can donate blood and do! (I am not allowed)
a very uplifted John the elder.
(thanks to all the encouragement from people on this site also!!! And I hope you all get good news like I did!)
Dear Nini,
I am sorry you are feeling so bad. You have more experience than I do with vWD.
My experience with vWD has been very binary. I am up one week and then dashed downward the next when an AVM pops in my GI tract or the time I have extremely minor surgery that resulted in a 2 liter blood loss. I now have antibodies to Factor VIII and luckily they seem to yield to IVIG, but sometimes I think my insurance company is going to put a contract out on me and I'll see a couple of evil looking guys walking up my driveway.
It's so maddening to have my life put in such peril. My family goes through grief every time I have to go back to the big grey building. I had to be given a bedbath by the med. tech. a few weeks ago and it was my first experience having stranger wash me. I was a bedpan virgin and had to ask the tech how to use it. I am 73 years old and every night I had to put up with teen-age girls waking me up to draw blood samples and techs taking vitals. I had four needle sticks a day and had to have an IV dangling from my arm all the time. I battled with the kitchen because egg products kept showing up on my plate despite warnings and I am violently allergic to egg albumen.
I had no freedom of movement and looking at the literature, darn few options. No dental work, no life-saving surgery in case of an accident or other internal disorder. A prognosis of continual breaking of AVMs the rest of my, perhaps, truncated life.
But you know what, Nini, I decided that I am not ready. Instead of feeling bad, I got angry and decided to fight this beast tooth and nail. The first thing I had to do was look on all those Vampires waking me up every few hours to draw blood positively, I started showing them where the best veins were. I started talking to them about going on to Nursing School. I needed them to continue my battle, as well as I needed the kitchen staff, the custodial staff to pick up after me when I missed the trash basket and the Nurses and Doctors to make sure that all was in order with the medical plan which I was part of the planning.
It really isn't fair that I got an acquired immune disease of this severity through sheer unlucky chance. I am a nice guy and there are a lot of people out there who don't have disease and lived bad lives. I can't change that. I can't change my disease either. But I'll be dammed if I am going let it ruin my flowers or my family.
I am so appreciative of all the help given to me freely, by all levels of the Hospital staff, that I had to rely on to fill my basic needs while my leg healed and while I recovered from my last bleed, I was able to leave an anonymous gift to the break room fund to help them have a pizza party for both shifts.but I really don't have a good way to thank those who worked so hard to help me, especially those who had to empty the bedpan and change the bloody bandages.
So after the rain stops here in Florida, I'll think I'll go say hello to my goose and take a stroll through my flower garden, maybe pick up some storm-tossed branches (with strong gloves on!)
Hope you are feeling better, Nini, (Just picture a 73 year old guy with a beard asking a 40 year old female tech how to use a bed pan!!
Love,
John the elder
I'm so glad you're home John, sound like you and your wife have made your own little heaven on earth! Great news that the infusions did the trick, and bravo to the Dr who pitched it! We need thousands more like him!
Had to go on an out of state trek to the Rheumatologist office to pick up an new script, also donated 5 1/2 months of Enbrel, at $1500-$1800 a week cost since I can no longer take it due to recurrent infections. I know he will put it to good use for those in true need.
Then it was the 'Wallet-Mart walk', and though I didn't cover too much ground or have a big check out, it just did me in! My husband and I both turn a year older this month and my son asked if he could take us out to eat. It's wonderful to go, but the boys get so restless and usually get in trouble not wanting to sit still, so I suggested a picnic here.
The targeted item was a new badminton set, as I can never find one that lasts more than a season, so mission accomplished there. Instead of gifts for each other we usually buy something for the kids, like a basketball set up, swing sets, balls, bats, bikes and anything to encourage the grand kids to come!
Hoping for a beautiful sunny day Sunday to spend with the loved ones!
Hey ninibeth,
Sorry you are struggling, but glad you have loved ones to help you! We'd be lost without them! Hope you can get to a better place very soon!
Yes, SK, when you are up you are indeed UP!!! Nothing like a family picnic or a meal out to put the frustration of being in the waiting room at the ER or ED as they call it down here!
I am out doing small things on the HoneyDo list and thouroughly enjoying it.
My Ham radio antennas took a direct hit from lightning yesterday and it hardly dampened my spirits despite the plugs arcing over a few feet from me. Then another storm hit the power lines and two trees near the house. I kept smiling because I've been through worse, just last week. Changing your perspective can be very helpful!!!!!
John the elder