Doctors' Visits

Wow, just noticed that my last post here was October 3.  Where does the time go?  I probably would have written sooner but I ended up cancelling a couple of appointments in November and December due to diarrhea.  And that pretty much sums up the last few months where my main concern has been exactly that.  Just recently I have made some progress using a combination of cephalex  and Immodium.

I have had a couple of flare ups so had my rheumatologist call in a prescription for prednisone which, as in the past, proved to be very effective.  And that brings me to my visit yesterday.  First of all my rheumatologist was delighted with my weight which now stands at 131 pounds.  I have not weighed this much in at least six years so, needless to say, I too am overjoyed.  Thank you TPN.  Also she wrote me a prescription for 200  prednisone with 3 refills, enough to last me a very long time.  I will continue to reserve it for those times when the pain is at a peak.

Today I saw my GI doctor.  Pretty uneventful except that, again, the dietician was pretty happy with my weight gain.  I also asked to have my J-tube removed which, much to my surprise, he did right there on the spot.  Only problem is that some fluids seeped out the hole where the tube had been and man did it stink.  My tpn has now been reduced to 6 days a week.  And that's about it for my doctors' visits.

So, generally, things are going pretty well.  The last couple of days the pain has been slowly worsening so must get my prescription to the pharmacy so I'll have some prednisone on hand.

GI Doctor visit today

It was a short visit primarily because everything is going well. My weight is now 105 pounds, that's another pound since last Friday, which puts me at 105 or 15 pounds since starting TPN. It was suggested that we go for another two months and then start weening me off TPN and back on to the G-J tube which has less risk than the former. That would put me in the neighbourhood of 120 pounds and I can certainly live with that. I may even be able to put some more weight on after I''m back on the g-j tube.

Dr. Howard attributes my ability to take in more food orally with the fact that I am taking the antibiotics, metronidazole and ciprofloxacin on a continuous basis for three and four days a week respectively. This has apparently stopped the build up of harmful flora in my gut and thus no bloating and fewer problems with bm's.

I must try a feed through my g-j tube one day soon to make sure I don't go back to the bloating problems.

100 Pounds

Well, it took an extra week but I weighed in at 100 pounds this morning. I have been eating lots of turkey along with all the trimmings but it looks like it hasn't done anything to increase my weight, no surprise really, but I have enjoyed the experience of eating all that great food nonetheless. I am seriously considering going back to drinking an Ensure/Boost every day, something I did up until the time I started TPN.

On another note, I fell the other night as I was on my way to bed. My IV stand which has four wheels that all want to go in different directions at the same time, was the culprit that tripped me up. Fortunately I had my cell phone in my pocket so was able to call my daughter as I lay on the floor bleeding profusely from a couple of gashes on my head and she and her partner were here in five minutes. Also scraped up a knee and my shins pretty badly.

My inability to get up after a fall does give me cause for concern. If I hadn't had my phone I could have lain there all night and that prospect scares the hell out of me. I am considering getting one of those alarms that I can wear around my neck when at home and will probably look into it next week.

And finally, my winter chair is in the shop with a broken gearbox. Repairs are complicated by the fact that the chair has been altered to fit my snow tires but I have enlisted the help of Joe from Tetra who has generously agreed to help get it up and running again.

98 and Counting

The title says it all really. This past Friday, my weighing in day, I was 98 pounds which means that I have gained 8 pounds since going on TPN. It also means that, as predicted, for the past three weeks I have gained 2 pounds /week. Should the trend continue, that means 100 pounds for Christmas and I can't think of a better present than that.

I have spoken to my dietician a couple of times since last writing here and everything looks good from her end as well. My weekly blood work indicates no problems so as long as everything continues in this vein I can start doing it monthly in the new year.

Oral intake of food continues to be a positive experience so I am really looking forward to Christmas dinner, twice, this year.

And on that note I'll sign off by wishing everyone a very happy holiday season. whether it be Christmas or Hanukah or just a time to spend with family and friends. And all the best in the new year.

Two Weeks on TPN

Well, it's been two full weeks that I've been on TPN and it continues to be a very positive experience. The best part is that I am eating real food every day without any ill effects - no reflux, no diarrhea - and that alone has boosted my spirits. I also have more energy to the point that, a couple of days ago, I went on a cleaning frenzy and got rid of all the clutter that had accumulated around the place. feels really great to have that out of the way finally.

Yesterday the dietitian in charge of making up my formula called to see how things are going. I asked about the lack of weight gain and she said that was as she suspected because she had intentionally kept the calorie count down (1600 cal.) because she didn't want to overwhelm my body to start off. The next batch of formula will have an additional 300 cal/day which should mean that I will gain an average of 2 pounds/week. Sounds good to me.

It's All Good

First of all, my hand, although I am experiencing some pain, is doing well. No pain killers for well over a week now. Yesterday my hand slipped while turning on the stove and I banged it and that hurt like hell but the pain subsided pretty quickly so no real harm done. I'll just take it as a warning to be more careful in the future. On November 26th I will be seeing an OT to see if we can do something to make my middle finger more functional. It is currently displaced away from the thumb so I would like to see if it can be helped to move back more towards the thumb so my hand will be more useful.

TPN continues to go well also. I decided that I would weigh myself each Friday, thereby avoiding potential disappointment by checking my weight every day and seeing no progress. Well, I was still disappointed this past Friday when, after one week, there was no significant weight gain. Perhaps I'm expecting too much in such a short period. I can't be entirely certain about the accuracy of my bathroom scales but I may have gained a pound, possibly two, in which case I would be delighted. At worst, I have stayed the same which I can also live with. I should also mention that I have not, as suggested by my dietician, done any G-J tube feeds in this time period, nor have I been drinking boost every day. The reason is that I am simply enjoying not feeling bloated all the time and, even better, I am taking food orally on a regular basis and my bowels are handling it just fine. I've even stopped taking the pariet and have not had a single bout of reflux. This makes me think that it may have been my formula which was causing the problems previously.

Need I point out how much I am enjoying eating real food again? Today, for example, I have had scalloped potatoes and meat loaf which my daughter brought over. For dessert I had Oh Henry bar pieces and I have also had tea, hot chocolate and just finished a coffee. And I am still hungry but will resist eating more as I don't want to overdue it. A couple of weeks ago this would have been unthinkable.

So, in summary, I am feeling much more positive about life again and that's got to be a good thing.

Update

The past couple of weeks have been very busy. The amputation site is healing very nicely and I suspect that stitches will be removed when I visit the hand surgeon tomorrow. The pain is best described as intermittent and varying but overall mild to moderate. Some days it is sharp and stabbing and others a dull throb but always isolated to the stump and phantom finger.

Today, with our third class, my daughter and I finish our training sessions for TPN . The PICC line was inserted in my upper left arm yesterday, a quick and painless procedure. Tomorrow my supplies arrive and I begin my TPN feed and before you know it everyone will be calling me chubby cheeks.

Update: It's now Friday. First feed went well. I even woke up this morning feeling hungry and that has not happened in a very long time. Had a pudding cup and an Ensure which pretty much filled me up.

I was right about the stitches, they were removed yesterday. The hand surgeon was very pleased with the way my hand has healed as am I. Here's a pic if you're interested.