This topic contains 24 replies, has 3 voices, and was last updated by  Brittany Foster 2 months, 4 weeks ago.

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  • #19132
     Colleen Steele 
    Keymaster

    Are living with PH and Sickle Cell Disease or another type of anemia and/or blood disorder? Which were you diagnosed with first and was one the cause of the other? Share your experience of living with and treating both diseases.

    Here is link that discusses the coexistence of PH and Sickle Cell Disease.

    https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3916937/

  • #19159
     Jen Cueva 
    Participant

    Great topic, Colleen. I have iron-deficiency anemia and require iron infusions. I see a hematologist and he does blood work and the infusions several times per year. I developed this after PH, but my Dad is anemic as well, so we are unsure of the cause. I have not had any issues with my treatments.

    My hematologist did mention that my PH meds could be affecting my blood counts as well, so he monitors that every few months.

    I know someone who has sickle cell, not PH, but he is always in so much pain and fatigue. I cannot imagine them both. My anemia don”t really cause me pain, but adds to my fatigue, for sure.

    • #19165
       Brittany Foster 
      Keymaster

      Jen,
      I totally can relate to how you feel with anemia
      When my levels are monitored in the hospital I always have low blood cell counts, hemoglobin, hematocrit, the works. I have had to have iron infusions before ans almost required a blood transfusion after my last surgery. I remember the fatigue and exhaustion from that so well. I also would feel really clammy and pale. Do you have these signs too when your levels are low?

      • #19189
         Jen Cueva 
        Participant

        Ughh, Brittany, anemia can definitely cause my skin color to be paler than my usual. I also crave ice, like crazy! It is not good, when on fluid restrictions, LOL.

        I do not consume meat as often as I should. I try to eat spinach and other greens, nuts, tomatoes, and potatoes. All of these are iron-rich as well. I also look for iron-fortified bread and pasta, when I eat them. Cereals can offer some iron as well.

        Have you had a tougher time lately, since you are depending mostly on your tube feedings? I cannot imagine how tough it must be for you to get adequate nutrition when you’re having such a tough time. I am sorry that you are dealing with all of this.

      • #19201
         Brittany Foster 
        Keymaster

        Hey Jen,
        Thank YOU for the suggestions too! I actually have been having a harder time lately. I try to eat some things by mouth , have a few good days and then end up vomiting and aspirating without even realizing it sometimes. It has been hard. This past weekend I was told “nothing by mouth” with a bunch of exclamation points after it from my GI doctor. I think she means business so I am going to just rely on the tube. It is hard though because I am still running it at a lower rate so only getting about 500 calories from it overnight. Definitely nowhere near all of what my body needs, at least it’s something but it doesn’t take away the urge to actually eat by mouth and I think that’s one of the hardest parts is the mental side of it all.

    • #19180
       Colleen Steele 
      Keymaster

      Jen, I’ve dealt with anemia as well and knowing how tired it can make you, I can’t imagine dealing with it on top of PH. I’m sorry that you have this added issue on top of everything else. Anemia has been more of an issue for my son post transplant than when he had PH. He was on iron supplements for a few months then taken off of them when he reached goal levels. He’s been maintaining by eating more iron rich foods.

      • #19184
         Brittany Foster 
        Keymaster

        Hey Colleen,
        Just out of curiosity. what are the iron rich foods that he likes to eat? I can’t do meat and am technically not able to eat much of anything yet besides some softer foods here and there, but when I think of foods with iron I immediately think of red meat but I know there are so many other types of iron rich foods out there! What are his top favorites?

      • #19186
         Colleen Steele 
        Keymaster

        Brittany, meat is his primary source of iron but he also eats a lot of spinach (leafy kind in salad), tomatoes, eggs (he only likes sunny side up) and last night he was feasting on peanut butter sandwiches. We only use wheat bread which is another good source. He hates raisins but if you like them that’s another good one. There are also some good iron rich cereals out there if you are able to tolerate milk.

        Here is a good article. His doctor also gave him a list, which I have misplaced. When I find it I will share that with you.

        9 Iron Rich Foods To Combat Anemia – Treat Iron-deficiency Anemia

      • #19196
         Brittany Foster 
        Keymaster

        Awesome, Colleen! Thank you so much for sharing the link. Right now unfortunately I am pretty much on a “don’t eat anything by mouth” plan so it’s just liquids and yogurts and ice creams until I can get these aspirations under control. I have been taking the old fashion flinestones vitamins with iron ! I used to get constipated when I took iron though so I always had to double up on laxatives to keep that from happening. For those who take iron supplements for anemia does it ever constipate you?

      • #19200
         Jen Cueva 
        Participant

        Oh, Brittany, I hope that you’re able to eat a variety of food soon. On your question, I’ve always had issues with iron supplements and constipation. I hope that your extra laxatives will do the job. I’m sure with those and any pain meds, you’re really dealing with constipation.

        I remember those Flinstone vitamins, I didn’t know they are still around, hehe

        Oh, I love it, your ice cream goes with everything. I’m not a huge ice cream fan but have been wanting some lately. Sweets, well that’s more my jam. Hehe

      • #19204
         Brittany Foster 
        Keymaster

        Yes! The Flinstone’s Vitamins are totally still around! They have them in immune support ones that I take and ones with added iron. You’re right that the combination of different medications can sometimes lead to constipation for us. I HATE being constipated. That has to be one of the worst feeling ever. Whatever I can do to avoid that I DO at all costs LOL!

      • #19207
         Jen Cueva 
        Participant

        I’m sure it’s a tough situation for you. Constipation can cause horrific pains. I’m hoping you can balance the extra iron with your laxatives and benefit.

        I know many of the meds can cause constipation.I’m sure it’s just not mentioned as much, but most PH patients have probably had issues with either constipation or diarrhea from their medication regimen.

      • #19225
         Colleen Steele 
        Keymaster

        Brittany, I was very anemic during both pregnancies and had to take iron and constipation was a problem. Due to the 20 some medications that my son is on post-transplant his digestive system can get really messed up. He has been on doculace since transplant and it helps him a great deal. It’s one of those medications that he has the option to stop taking but he has found it necessary to continue because whenever he doesn’t take it, he has problems.

      • #19246
         Brittany Foster 
        Keymaster

        Colleen,
        I can relate to your son ! I am very dependent on laxatives and stool softeners and have been since I was pretty much born. So without taking them or with missing a dose my system just gets SO messed up and slowed down. Being backed up is one of the worst feelings ever. I HATE having to spend my day in the bathroom trying to go. The straining just makes me feel so dizzy too. I’m sure others can relate!

      • #19255
         Jen Cueva 
        Participant

        Brittany, yes, being “backed up” can be a huge problem. The horrible pain and the straining can be exhausting and cause dizziness as you mention.

        I also take something daily to help me with constipation. Mine is a stool softener with a laxative added. I cannot go without this.

        Colleen, I am glad that your son has decided to continue his laxative/stool softener to help with constipation.

      • #19190
         Jen Cueva 
        Participant

        Colleen, I hope that your son will maintain his iron levels through his nutrition. You offer some great suggestions. Peanut butter is a good one on whole grain bread. I was never a PB fan until the past few years. I know, I was a strange kid, hehe

        Have you also dealt with anemia yourself? I know you have your own health issues, too. It is not easy to manage co-existing illnesses, a balancing act in itself.

      • #19197
         Brittany Foster 
        Keymaster

        Jen,
        Peanut butter is actually my TOP favorite soft foods. Mostly because it is calorie dense and has protein in it, especially the PB2 that is packed with peanut butter. I usually melt it and put it on top of some ice cream! Everything is better with sweets added to it , right!?

      • #19226
         Colleen Steele 
        Keymaster

        Jen, I have had problems with anemia, especially during pregnancy. One of my tells that I need more iron is when I start feeling light headed. Does anyone else experience that with anemia?

      • #19232
         Jen Cueva 
        Participant

        Interesting question, Colleen! Well, the light-headedness is something that I deal with ongoing. I am not sure if it is a side effect from my PH meds or my anemia, so great question.

        Often, with co-existing illnesses, we have a tough time trying to figure out which one causes what, etc.. Do you find that as well?

        Ohh I totally like to much on junk when I am stressed, so I agree, I really do not know how Britt does it !!

  • #19229
     Colleen Steele 
    Keymaster

    Brittany, I hope things get resolved soon so that you can start enjoying more foods again. I don’t know about you, but when I’m stressed and worried I tend to want to munch on something. If you are like this too than I can imagine how difficult this has been for you. How are you doing today?

    • #19244
       Brittany Foster 
      Keymaster

      Hey Colleen and Jen,
      I definitely feel more light headed when my iron is low or when I am anemic. It drops my blood pressure too so I think this is probably why I feel that way. It just makes me feel over all more tired and run down which doesn’t help with the dizziness feeling. I usually have to take a lot of breaks during the day when I am like this. I have been struggling the past few days with not feeling well from the pneumonia and bronchitis combo. Honestly the worst combo of illnesses that I’ve had in awhile, especially not being as nourished as I would like to be, it is harder to fight it off! But I went to my doctor today and added steroids to the antibiotics and pain meds with cough syrup that I have been taking. It is helping the chest pain but I just feel overly exhausted and probably will be feeling crummy for awhile.

      • #19254
         Jen Cueva 
        Participant

        Brittany, I can relate to the low BP since some of our meds cause this and the anemia contributes, too.Lateluy, I have been taking more breaks wit the heat and the low BP.

        I hate that you are dealing with that, “double whammy”, I cannot even begin to imagine how bad you are feeling. I hope and pray that the steroids and antibiotics kick in soon. How do you deal with the hunger that the steroids can cause? Do you experience this side effect from them?

        Do you also use nebulizers throughout the day as well? I know this is something that I have at home and helps mewith bronchitis and pneumonia. I am sure with you having both, this will take a while longer to resolve. My heart breaks for you. I am here if I can be of any help. Rest, and rest some more!

      • #19271
         Brittany Foster 
        Keymaster

        Jen,
        I need TONS of rest. I am just so beyond exhausted and I know my body needs a break. It is making me questions if I was just running off of nervous energy before or if this really DID just come out of nowhere. It’s kind of hard to tell though. I had a really busy and active week last week and this week it is a drag to just get out of bed in the morning and go to my follow up appointments. I have 4 more appointments until the end of the week so I am really busy and can’t really nap through the day as much as I would like to, but I fall asleep pretty quickly when I get home.

      • #19300
         Jen Cueva 
        Participant

        Brittany,
        I am sure you are beyond exhausted! Your body definitely needs a break and soon. I cannot even imagine how you must feel so horrible. Then, still you have more appointments before you can start to rest.

        It’s interesting that you mention, nervous energy. Often, I find when I am overexerted and anxious, I am like a “live wire” as my hubby says. That is until my body crashes and I am down for days. I have a feeling that maybe you have had a combo of all of the above. Who knows at this point? But you have had several other contributing health issues/surgeries.

        I emphasize with you. I pray that you will be done with your appointments and get back to comfy pjs and bed.

      • #19315
         Brittany Foster 
        Keymaster

        I hope so too, Jen! Nervous energy is something that I “run on” sometimes. Some days it feels like my only fuel to really get me through the day. But that crash feeling after is just not good and I end up feeling so exhausted and needing to catch up on tons of sleep. Lately I have been way more exhausted than usual. Not sure if it’s from not wearing my bipap or if there is something else going on (besides this recent bout of sickness) that is making it worse. It’s always a wondering game it seems. It can get tiring just trying to figure out what’s going on. This week I have had tons of appointment and I have a GI appointment tomorrow so will see what they have to say about everything too and where to go from here.

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