I feel like my recovery is going backwards this week.

Last week’s mouth sores subsided in terms of pain. The swab results came back negative for any treatable virus or bacteria. The doctor can’t confirm if it’s GVHD of the mouth – it “could” be was his answer to me. Everything still tastes like cardboard. This may sound like not a big deal, and it isn’t, really, except that it is mentally quite devastating for me, much more so than my hair loss. I have to face the disappointment of eating cardboard 3 times a day and there have been many times where I just refused food outright. I know I’m an adult and I should know better, but I just can’t eat. Everything I eat must be slathered with sauce or be moist, or it just physically won’t go down due to my dry mouth. Please, please, please…let this recover soon.

My hands and feet started to get real puffy and itchy. The doctor thinks this is GVHD of the skin. Of course, there’s no definitive test, but he looked at it and thought it was. So, he told me to hold my cyclosporine (immunosuppressant medication) at current levels so that the situation doesn’t become too bad too quickly. In previous weeks, we were trying to wean myself off the cyclosporine. As soon as we did that, the mouth thing happened and now the skin thing. So far, nothing too painful or dangerous so I am grateful.

And I also found out that my cytomegalovirus (CMV) is positive again. It was positive when I was discharged from the hospital and was successfully controlled by medication. Now, it’s positive again, so I will be back on the same medication again. Not what I wanted to happen cause the medication can reduce my blood counts to dangerous levels and then we have to figure out what to do to bring it back up. Just more complications to deal with I guess.

OK, I should stop complaining. In the grand scheme of things, these things are nothing compared to some really bad things that could happen. I have to keep reminding myself that I must look at the big picture. What’s a few bumps in the road? I’ll survive these. I must remember to give thanks to God for keeping me safe and strong.

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8 Responses to Day+92

  1. Cheryl Thornton says:

    Winnie – I had the same problems with food and dry mouth – I was best eating spicy foods because at least they seemed to have some flavour – and I drink lemonade – its tart and causes your salivary glands to work harder which in turn combats the dry mouth – maybe that will work for you too! Hang in there and keep a good eye on those CMV numbers – they can get out of hand quickly and it is nasty to transplant patients

    • helpsavewinnie says:

      Thanks, Cheryl! My new favorite drink is C-Plus (or any orange flavored pop). I can taste it more!

  2. Winnie, been following all along. Keep trooping. Think of how much you have overcome, and how much you have to look forward to. Amazed at how strong you have been through the process. Inspiring. -K

  3. bdworman says:

    I totally understand where you are coming from with the eating. I would drink so much tea or water at meals, just to get the food down. Chicken was the worst. I pray it eases very soon.
    Lots of Love from Lubbock,

    • helpsavewinnie says:

      Hi Michelle! Would have to agree – chicken is bad, but I hate all meats at the moment. I feel like a picky 5-year old!

  4. Helen says:

    Hiya,sorry to hear youre mouth is no better.I have gvhd of skin too.I was prescribed steroids to treat it.Theyre working.8x5mg a day.reduced to 7 this week.
    My cmv re activated too.Luckily no bliid transfusions yet.hb 8.5 ,transfuse below 8.I do hope that youre health get better soon.Have you been able to venture out.Ive been taken out in car ti some lovely places.Just stayed in car and picnicked.xx

  5. helpsavewinnie says:

    Hi Helen, I haven’t been prescribed any steroids yet. Still on immunosuppressants. I have been averaging 2 units of blood every 2 weeks. I do go outside during off-peak periods, when not too many people are around, such as to supermarkets and big box stores to walk around. But I find myself physically hiding behind my husband when someone crosses my path, like I was scared of that person! I guess I’m still scared of people’s germs when I go out. For those that don’t know my situation, however, it looks like I have a psychological problem, haha!

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